Ian’s headed into surgery today (finally!) and I will be posting updates on our team page on Facebook. Follow along there: facebook.com/teammimian
Ian’s headed into surgery today (finally!) and I will be posting updates on our team page on Facebook. Follow along there: facebook.com/teammimian
In our neck of the woods winter is finally fading and with it brings a bit of hope.
Since the end of November Ian and I spent almost all of our time holed up in our little house. As wonderful as that may seem, involuntary house arrest is never idyllic. (But voluntary house arrest is??) It began with some familiar issues.
Two years ago Ian went through a bout of incredible stomach pain. While he’s suffered from stomach acid issues for years this seemed different. He was sent to the first GI doc available, who was unfortunately an hour and a half away, and began looking into what could be causing his symptoms. Testing for stomach issues showed nothing all that unusual and very, verrrry gradually things eased up in the mysterious way that medical problems can sometimes do… in the same way you can be relieved and frustrated by the mystery at the same time.
So, at the end of November the strange abdominal pain reared its head again and again the GI doc had nothing to give Ian by way of an explanation. Finally after quite some time and excruciating and worsening pain the GI doc decided to do testing. Scopes, an ultrasound and multiple ER visits later we still had no answers.
Meanwhile, I had managed to get incredibly sick with one of those lovely things that gets brought to the office and was out for almost all of December. During the holiday break from the university where I work I managed to get a job at the Capitol Theatre (local downtown theater) doing wardrobe for the traveling show of “Pippin” that was beginning it’s run in Yakima. It helped make up for the work I missed but was a struggle to be away from home as Ian’s symptoms worsened.
In the 13 years that we’ve known each other I’ve never seen Ian in so much pain. It’s such a helpless feeling to try to comfort someone when the most comforting thing would be information. Frustratingly his doctors threw up their hands until it seemed as if they had given up all together. He had lab work done at the end of January and we just received the results last week. His chromogranin-A (CgA) was elevated which was a huge concern. High levels of CgA can indicate a neuro-endocrine tumor – like the kind that I have in my liver – but you can get a false positive from taking Proton Pump Inhibitor (PPI) medications such as Prilosec, which Ian does. These test results were sent to him by our GP without so much as a phone call of warning! When Ian looked up what a high CgA means and called the doctor in alarm the GP said, “I don’t know what that high number means. We should check with the GI doc.” GAH!!!! Now the trouble with checking with the GI doc is that he does not return phone calls – not to us, not to the GP, no one and it’s maddening. STILL! The GP should never have sent test results without some sort of warning and information on what it meant. Even if he just called and said, “You’ll be getting those lab results we were waiting for in the mail. Your CgA is high and I’m not sure what that means, it could be your medication, but I’ll put a call in to the GI doc to check.” When Ian had phoned him he didn’t even mention that medication could be a factor. Perhaps he didn’t know. (We found it in a Journal of the American Medicine Association (JAMA) article online.)
We put in a phone call to the GI doc Monday, Tuesday and Wednesday of last week and heard absolutely nothing back. Now, this is the same GI doc that had arranged for Ian to see a surgeon without ever discussing it with Ian. One day, out of the blue, Ian got a phone call from surgical consult registration wanting to get his insurance information and set up an appointment. This was the first time Ian had heard anything about surgery or that the GI doc seemed pretty sure it was a gallbladder issue! When he brought it up to the doctor the concept made sense but it REALLY seemed like something that the doctor should have mentioned BEFORE arranging surgery… right?!? (I feel it also warranted an apology, but what do I know…)
Ian finally saw a surgeon in Yakima last Friday to get his take on whether this is a gallbladder issue or something else. Not only did the surgeon say he was at least 95% sure gallbladder removal would help he said that although not everything was typical with Ian he had been showing symptoms that would lead the surgeon to gallbladder issues every time. “If a patient comes into the ER with pain below the sternum like you are illustrating we would first look for a cardiac issue, as many patients with this problem are older, and the very next thing would be gallbladder.” What the HECK!?! Why did it take sooo damn long to get an answer from Ian’s doctors? And even with the GI doc sending Ian to a surgeon our GP still wasn’t convinced it was something requiring gallbladder surgery or even attention to the gallbladder. WHAT!?! In fact, this GP and another Ian had to see because ours was out were treating Ian like a psych patient, as if most of his symptoms were all in his head.
A few weeks ago our GP had used some medication normally prescribed for anxiety on Ian because the “off-label” use is as a muscle relaxant specifically for abdominal spasms. It has been working to reduce the muscle spasms that have sent a doubled-over Ian to the ER and to eliminate the need for pain medication. I’m perplexed as to why the doctor that prescribed such a medication as a muscle relaxant would then believe Ian’s mind is creating all the symptoms.
What we would have liked to have experienced was a doctor that said, “Boy, this is like the symptoms you had before, isn’t it. Let’s schedule some testing and in the meanwhile reduce your fat intake to almost nothing and let’s see if that relieves some of your symptoms.” Ian’s reaction to eating fat, even good fat, was one of the most tell-tail signs that this is gallbladder related. There is also a history of 2 close relatives having their gallbladders removed around the same age as Ian is now for some of the same issues. The location, the timing, the types of symptoms… in hindsight it’s all too obvious to us and we aren’t doctors. We’ve had some of the worst experiences with doctors in this town. It’s frustrating, disappointing and frightening. What happens to all of those folks that don’t look things up online, that feel too scared to advocate for themselves or who believe anything their doctor tells them to be gospel? How much could’ve been avoided if these doctors were “up to snuff” and stayed current with new tests, procedures and diagnostic measures?
Ian will be having his gallbladder removed on the 23rd. It’s an out-patient procedure and the most common surgery done in Yakima, and I assume most places. While looking forward to eating cheeseburgers and pizza is certainly a reward for the surgery I think Ian will be thrilled just to get back to eating “real food” again and not having to freak out if something has more than 3g of fat per serving. It’s the small things…. or so I hear.
We apologize for the long long radio silence between posts… I didn’t think it had been as long as it this so I was shocked to see the last post was from May.
Now, as you may have guessed a lot has happened and some things are still in the air. In May we went to Stanford (as readers of the blog will be well aware); first at the beginning of the month and again near the end. Rather than going into a very long-winded description of the second trip – I tend to push long-winded into hurricane territory sometimes! – I’ll just give you the gist of what everyone down there had to say:
So… yep, no transplant.
For the summer my symptoms have been greatly improved. I began working more regularly, driving myself. I was able to resume walking and yoga to my tremendous relief although I’m still pretty scrawny looking. And Ian and I have been able to make plans about staying in Yakima instead of moving to LA to go to Cedars-Sinai. Ian now has a new job at PNWU in the same department I work in and has applied for a higher position. Everyone seems to really like him and a friend of ours who was also hired into the department.
The biggest issue these days is wondering “now what?” We weren’t excited at first to move, it was actually quite terrifying and frustrating, but we warmed to the thought and then began looking forward to being near some of my relatives and spending time with long-lost friends. We had plans to go to museums and see shows being taped, eating new food and getting therapy through live comedy. Being near the beach would have been lovely and taking time to write and reset actually sounded kind of… nice. And having a fully functioning heart seemed really thrilling at the beginning.
The relief of hearing “no” to transplant has been battling with the let-down. The more research we put into heart transplant and then liver/heart transplant with cancer present the more apprehensive and frightened we became. Immunosuppressants can be just a little tricky in a “normal” person needing transplant, but for someone with existing cancer turning down the strength of the immune system could cause the body to go down any number of treacherous roads mainly a cancer growth surge. I also have such a huge amount of antibodies that would prove to need even higher doses of suppression and therefore more issues like being highly susceptible to illness. Thank god I don’t need the transplant right now!
My biggest hope is that if transplant is in my future that it can be staved off until stem cell organs are common. “Adult” stem cell research has already provided patients with help in leukemia and bone marrow cancers for years and also with tendon and ligament replacement in horses. The growth of a functioning heart is currently in the works and while the structure is very close so many more billions of stem cells are needed to create a heart that can fully function. We’ve read that scientists are about 50 years more advanced with stem cell science than they thought they’d be at this time. That’s great news! It would be wonderful if my body and science could agree to only interact with each other when the time is right… That’s not a big thing to ask, right?
I have an appointment scheduled with OHSU on October 11th to discuss all the latest news in my health with Dr. Gelow. This is the transplant doctor that I actually like and trust. I’ve had the run-around from so many of the other doctors as well as some news that just didn’t seem to make sense. Gelow is the first transplant doc I saw and seems like the best fit for me.
It’s a good thing I have an appointment already set up because as of yesterday and today my symptoms have been returning to some undesirable territories. For months I’ve only had a mild episode (aka presyncope) once every 3-6 weeks or so. In the last 36 hours I’ve been having presyncope or am on the verge at all times…. it’s frustrating. Ian pointed out that my symptoms did increase a bit just the week before we went to Stanford the first time. Perhaps this is the same kind of thing..? But he’s been feeling nauseous today and looking a little gray, I know it’s most likely because he’s worried. I’ve been tracking when I actually go into presyncope and notice that it’s usually when I’m bent or stretching at the waist. Now, this isn’t new, I had had a lot of issues with bending before, but I can really feel a focused squeezing just below my ribs where my stomach ends and guts begin as well as a tightening through my esophagus. Perhaps we need to look more at what’s happening there. Perhaps there’s a new clot on my heart valves… that’s the last thing I want to consider. Perhaps it’s more than a coincidence that at the same time I finally felt my digestion get back to normal from the bowel resection/tumor and gall bladder removal/hernia repair/near-death experience in 2012 that I started having blood clot and fainting issues. Good lord, who knows…
Dr. Banerjee, the cardiologist at Stanford, had put me on a medication that keeps blood pressure from going too low. He thought we’d rule that factor out first and since the medication typically didn’t have side-effects it seemed a good route. Of course, I’m not typical though. I developed an increase in headaches, headaches that are already tricky to try to control, and goosebumps. Goosebumps don’t sound all that bad but if they had defined it more as “slight chance of constant skin crawl” it might seem a little less innocuous. It felt like hearing nails on a chalkboard constantly! Bleg! He also recommended seeing a neurologist at OHSU. I’ll talk to Gelow about that as I don’t know any that would work for my case at OHSU, or in general for that matter.
Another thing I’ve been thinking on quite a bit is all the money that was so generously donated to our fund so far. You may be wondering about that too at this point… We’re looking into transferring the funds from the NFT, a solely transplant based foundation, to another foundation like Caring Bridge which covers general medical expenses rather than something specific. We will still need the money we raised to cover going to OHSU. It’s been a struggle to not be able to use the funds for expenses (bills, food, etc.) in Yakima while I’ve dealt with symptoms as it was meant to cover “out-of-town” living and travel expenses. So stay tuned for more on the fund business.
Right now I’m trying to focus on the good things happening: Ian’s possible job upgrade, crisp fall coming up (although we’re trying to hold off on turning the heat on…brrr!), looking forward to a possible new pup come spring (we miss Murray too much to go much longer without a pup) and inheriting our neighbor’s chicken, Henny, while having friends board a companion chicken with Henny to share in the few duties and expenses involved. My cutie-pie nephew just had his 1st birthday and we have a wonderful new neighbor moving in next month across the street that will be a perfect fit. I’m getting merch prepared for the annual Mighty Tieton holiday craft bazaar on December 3rd and we’ve been gathering up hazelnuts and walnuts to sell and/or store for winter… along with keeping them away from the neighborhood rats. (PS Rats are gross.)
Keep crossing those fingers and sending good thoughts. Perhaps that’s what has kept me away from transplant. You never know.
You guys, when I sit down to write these updates I always think to myself “Crap, how am I going to fit everything in? Do I even remember all the details?!” I often rely on my daily journal to sort of guide the way but I’ve been very lazy with keeping it up to date the last couple of weeks and now it’s going to bite me. I guess that’s the nice thing about computers, you can always go back and add or edit.
Ok, so! I’ll start with a quick recap for those of you who don’t follow our Facebook page (you can do so here if you aren’t already).
And we’ll start there!
Monday, May 2nd:
Luckily our flight out from Yakima wasn’t early at all – 11:00am – and after our crappy experience last time at the Yakima airport we remembered to get there very very early – 9:30 (for a small town “airport” that’s a lot of time). We just packed backpacks for the trip so there wasn’t any baggage to check in. Our flights and connection went smoothly so no drama to report. Yay! (These flights were very VERY generously donated to us after I found out that Angel Flight West didn’t get my paperwork in time. It was a terrifying few moments but Ian and I were very lucky that day at the same time. Thank you, RD! <3)
Our Seattle to San Francisco flight was complete with entertainment from the folks behind us. “Chris”, I think that’s what his name was, was traveling with his mom back home. I couldn’t figure out from the conversation what they had done in Seattle but dad hadn’t joined them. They looked out the window and pointed out the Columbia River (it was really just the lower waterways of Puget Sound) and the coastline (“See where that white line is mom? That’s the ocean!” “But which side of that line is the water?” We were flying over land, of course, going south along the coast… so… uh.) Chris also tried to teach his mom how to play Candy Crush, an experiment that while sounding delicious may not have worked that well, and they chatted about the train.
My ears perked up when I heard them talking about the train. I thought I might get clues as to how we were supposed to use this confounded transportation system! I figured that they too were going to take the BART to the Caltrain station. We’ll just follow them, I resolved. So… maybe not the best plan.
Once in San Francisco we had to figure out where to get the BART and where to get off to get the Caltrain – I got a glimpse of Chris and his mom as we got off the plane so I kept looking for them. In hindsight it isn’t really a complicated system but without a guide it was extremely confusing that first time. There are no Caltrain stations (the more AmTrak type train) or south-bound BART trains (BART is like their subway system) heading out of the airport but we didn’t realize. We got on the BART and thought we’d get off at the Millbrae station, the first stop, but that wasn’t the first stop. After a few more stops that were not Millbrae I finally asked if anyone knew how to get to the Millbrae Caltrain station. We had to get off and get on a BART going the other way….turns out we were going north rather than south! Annoying. I was very disappointed in Chris and his mother who stared at us as we rushed off the BART… aaand when the doors closed on my poor skinny arms.
We found the Millbrae station, bought our ticket to Palo Alto and soon stepped on board with a crowd of commuters. It would have been enjoyable if we hadn’t been so frustrated and confused. (The snoring person near Ian’s seat did add a bit of humor to the trip, however.) Thankfully the Palo Alto station was right next to our hotel. Hallelujah!
We checked in, went to our room and plopped on the bed to relax and watch a Penguins game. Soon a knock came to the door, “room service!” What?? As a total surprise my friend who had managed to get us a room at the hotel she works at for our entire 3-night stay had also sent us a gift basket full of fruit, cheese, crackers, bottled water, cookies, candy bars and nut bars. I couldn’t believe it! I knew what we were going to be snacking on and eating breakfast from for our trip! It was wonderful. (Thanks again SO VERY MUCH, Kristin!)
That evening we had dinner at the hotel’s restaurant. Fortunately, neither one of us eats very much (especially me right now) and we were able to get away with sharing a steak sandwich and a salad. We even had leftovers to eat for lunch the next day! We went to bed exhausted and trying not to think about all the navigating we’d have to do the following day.
Tuesday, May 3rd:
We had a very early morning. I was supposed to be on campus getting an echocardiogram at 8am but we weren’t sure how far of a walk it would be. We left at 7am and followed Google Maps’ directions to walk to the echo lab. Stanford in its entirety is under construction right now and Google’s walking route needed some improvisation on our part. Luckily we made it to the lab at 7:45, just enough time to find out my appointment was actually the next day. Oy. And this was after I realized that I had forgotten the entire folder containing directions to the various offices would be visiting and all the paperwork I had to fill out prior to my appointments, not to mention the mile I had just traipsed my very deconditioned body through. The woman doing check-in was very generous and said that they might have some late folks or no-shows. If that was the case she’d tuck me in for the echo.
Everyone came, albeit with seconds to spare, for the 8am appointments but someone didn’t show up for their 8:15am slot. I was in! Not only was I in but I was out in 30 minutes! Usually it takes about 15 minutes per artificial valve and can sometimes take almost an hour… maybe that’s just the people I’ve been going to.
I was not looking forward to walking back to the hotel but I needed to have that paperwork and walking was the cheapest option. Almost all the way back to the hotel was a charming vintage train station that had been fixed up with a little coffee shop inside. I got tea and we shared an almond croissant while looking at transportation options for the rest of our trip. Even with relaxing though by the time we got “home” my hips were angry and the back of my right knee was about ready to disown me.
We had lunch and decided to try getting an Uber ride back for my second appointment, something we had never done before. (I know, I know there are probably some of you thinking that we sound pretty naive to not have done that but when you live in a small town with your own car there’s no reason… so… be nice!) It was easier than I thought it would be and while our driver was a bit of a tailgater (tailgator? ha!) and didn’t seem to know where he was going (even though his phone was in his lap on Google maps – yikes!! Eyes on the road!!) we got to campus quickly and it only ended up costing about $7. Things seemed ok until we realized we were in the wrong building. Of course.
We were REALLY in the wrong building! A nice man at the info desk helped us get to a campus shuttle stop just in time to see a woman verbally abuse one of the shuttle employees.
“Get AWAY from MY CAR!” the woman shouted as she was coordinating something with a man in a separate car.
“But ma’am, this is a no parking area…” The shuttle was actually coming in right behind the two parked cars.
“I am not going to talk to you. Get the hell AWAY FROM ME!” said the woman again.
I just had to figure that she was experiencing something pretty lousy that day to be so horrible to a mild mannered, petite woman doing her job. We were in front of a hospital after all. Who knows what her day had been like. (It’s still no excuse.)
As we got on the shuttle I said to the shuttle employee that I hoped not everyone was as rude as that woman.
She sort of shook her head and said, “Yeah, I’m not sure what was happening there…”
“Well, she was being ridiculous. Try not to let it ruin your morning.”
“Oh, thank you… That makes my day…” he gave a sheepish smile as we got on the shuttle.
(Speaking of rude, the shuttle was completely quiet save for one older “gentleman” crowing into his phone about football strategy. He must’ve been a coach or something but, I’m telling you, the shuttle was absolutely silent other than him…. *sigh*)
We reached the oncology department which was a long row of waiting rooms and check-in desks on the right side and window seating on the left. I went to the liver oncology desk (I mean, that would make sense, right?) and was told I was in the wrong place. Thankfully I was just at the wrong check-in desk so we relocated, checked-in and found out they were offering free snacks and water AND massages! Sure enough, there was a little massage chair, like what you see at the airport, tucked into a sunny waiting area just to my left. Oh yeah, after my appointment I was all over that!
In the appointment we met with Dr. Kunz’s assistant who asked me questions and told me a little about the GA68 PET scan. Dr. Pamela Kunz joined us, did a short physical exam and chatted with us. Here are the things we discussed (all of which I brought up to Dr. Pommier at OHSU – I’ll put his responses later):
Despite some of these details I liked Dr. Kunz. She seemed intelligent, sympathetic and treated us like people who “get it” rather than some uninformed pedestrians. I’m not a doctor (surprise!) but I do get a lot of the lingo that pertains to my case. So does Ian. I think together we make a very well-rounded, well-informed team and I think Kunz got that sense.
She said that we’ll schedule the scan for about three weeks out and she can give me the results over the phone. (Thank god!) Side note: the scan will be taking place on May 26th.
We decided to try going through the arboretum to get back to the hotel and it turned out to be a wonderful choice. There were stringy eucalyptus trees, kumquat trees, trees that produced little nuts that I thought might be beech nuts but turned out to be something else. It was away from the traffic and we even passed a little cluster of dudes speaking in Italian making it seem like we just might be somewhere in the Mediterranean. Oh, if only…
The rest of our day and evening went really well actually. We found a Greek restaurant that was just a fraction of a mile away in downtown Palo Alto. We had no idea that there was this quaint “city” center just past the train tracks! We ordered our food and walked a couple of blocks to Walgreen’s to get some eye drops and a couple of treats… you know, essentials. Everyone was milling around like it was Saturday in the summer instead of a Tuesday in early May. It felt like we were finally getting a grip on the non-medical portion of our trip.
And a side note: Normally I’ve been lucky to get 2000 steps a day lately. For those of you who use pedometers know that hat’s not much at all. The ovarian cyst threw me for a loop and while my belly has stayed way too round and uncomfortable the rest of me has melted away. Exercise was impossible for a couple of months and incredibly painful or uncomfortable for the rest. But by the end of this first full day at Stanford and in Palo Alto we had managed to do over 15,000 steps, the equivalent of about 5 miles!! No wonder I wasn’t feeling so great… And how is a potential transplant patient able to walk that much?!? The answer is – I have no idea. Most of this process as well as symptoms haven’t made a lot of sense to me to be honest.
Wednesday, May 4th:
Man, I hope you guys read these blog entries in doses instead of all at once…
Our day started a bit later on this day than the one before. I was seeing Dr. Banerjee, cardiologist, at 9am and we had decided to try the free university shuttle that ran in the mornings and evenings. We got on at the bus station right next door which was waiting for the next train to arrive, thus filling to the gills before we headed off. Unlike Tuesday there were people milling about getting to work and classes. Our shuttle dropped us off right behind the building we needed to go to! Heaven!
The Stanford Medical Center is VERY dated looking on the outside in a way that made us feel like we were on the original Star Trek, visiting a strange planet or some sort of Mad Men era complex. I’ll let you make up your own mind about it though…
Dr. Banerjee’s office was right next to where I had the echo done the day before – easy! His assistant took my FUUULLLLL medical history from a little before diagnosis (just over 16 years now) and somehow managed to only cram it all onto one page… He did kind of run out of room. Now mind you he had all my records from OHSU but wanted me to fill in the details.
After that bit Dr. Banerjee made an appearance, did a little physical exam and settled in to talk. He told me that he is a pretty aggressive doctor when it comes to getting patients the help that they need and he would review my records and tests with his team to get hings moving. Music. To. Our. Ears.
I told him that since making the decision to go the heart transplant route in October OHSU’s transplant team has sort of dropped the ball. He seemed incredibly surprised. “Since OCTOBER?” (Yeah. That’s what we’ve been thinking too, Dr. B.)
And just like that (Pshfft! yeah JUST!) we were done! We walked back through the arboretum again but using a different route. It seemed like magic because we hadn’t noticed wildflowers popping up everywhere until this walk. We were both so worn out from stress and fear of what the doctors might say. I think there was a bit of tension between us that was finally lifting… although our idea of tension would probably be imperceptible by anyone else… But on this walk we seemed lighter. We had the appointments out of the way, we had “mastered” the trains, we “found” Palo Alto and we’d be heading home the next morning.
Since we hadn’t been walking much that day and we were both hungry for lunch we decided to keep going right under the train tracks and into Palo Alto to go to a restaurant we had passed the night before. Even though we had just had something with a middle-eastern flavor by going to the Greek restaurant we went to Oren’s Hummus Shop for more.
The place was packed! We were lucky to find a table outside where a large open window and the open door let the most amazing fragrances waft out to smack us in the face. Ian got a crisp San Pellegrino and I got fresh lemonade with mint (I quickly made it myself almost as soon as we got home!). We shared falafel gyros and pita (SO soft and fluffy!) and babaganoush… Holy cow. It was even better than the Greek place. I wish I could’ve eaten more, so much more…
We decided since there was the funkiest candy store across the street that we should stop over and get a treat or two apiece. They had crazy things from all over the world. While our favorite candy shop in Pittsburgh seems like something out of Europe this shop definitely was American. Colorful, silly and lovely all mixed together to make deciding very difficult. I picked out some Haribo gummy candy that had wine flavors (it was just kind of fruity) and we each got a Double-Decker candy bar from England with lots of layered goodness. Relaxed(-ish), stuffed and ready to rest and munch candy we headed back to the hotel to watch a Penguins payoff game that Ian’s sister and brother-in-law were at in Pittsburgh. It was fun to text them about what we were seeing. (Especially because the Pens won!!)
For dinner we got a salad from the hotel and finished up leftovers. Thank goodness for an in-room fridge!
Thursday, May 5th:
We got up so early that it almost didn’t seem like the next day. Up at 4am to get to the Caltrain station by 5. Palo Alto was dark and there were crickets singing amongst the tracks. The train was nearly empty. We got off at Millbrae and were able to take the BART right to the San Francisco airport, you know, since we were traveling north. With loads of time to spare we reached our gate and prepared for the voyage home.
So, that’s that. Sorry about the long post and all the food details but since it was the only thing we got to enjoy while we were there I felt like writing about it.
We’re on our way back to Stanford in two days, Monday, May 23rd, and will be there until we come home on the 27th. I’ll be seeing a liver specialist, Dr. Banerjee again as well as FINALLY getting the Gallium 68 PET scan. We’ve had news between our first trip and now but I’ll likely include that in whatever happens in the post about this next time around.
Thanks for reading. I feel like my posts are ridiculously long-winded but in truth they’re as much for me as they are for you… maybe more. If you have questions hang onto them until I write the follow-up post. You may get answers before needing to ask.
And also, last word I swear, thank you to everyone again for thinking of us, helping with travel and lodging and good wishes. We couldn’t do it without you.
As Boz Scaggs said, “…the sad, sad truth, the dirty lowdown.” Well, except I doubt Boz Scaggs was talking about transplant frustration when he wrote that song. Still! You never know! Well… ok, maybe you do know in this case.
Sorry, that’s me getting off topic, aka procrastinating. I’ve been asked a lot lately what’s going on with the whole transplant business and while it’s an extremely valid question it’s not one easily answered. It tends to be the case these days that any “Oh hey! How ya doin’?” receives a long pause on my end and/or some sort of Tina from Bob’s Burgers impression. (If you are unfamiliar with Bob’s Burgers let me first feel sorry for you. If you would like to know what Tina’s moan sounds like here you go: Tina moan compilation) Ok… yes, I’m getting off topic again.
Fine! So why don’t we start back a bit so that you’re all caught up. I’ll try to make it fast.
Beginning in September of 2014 (fast, I tell ya) I started fainting for no good reason. I passed out alone in the street one of the first times. Yes, scary. I spent most of 2015 looking for answers by “visiting” my local hospital a couple times and then OHSU in Portland a couple times. Even with numerous tests (blood tests, echos of all sorts and the lovely head CT for when I tried to do a Humpty Dumpty impression with my cranium and our concrete front patio) no one could figure out squat and it was terribly frustrating and frightening.
Finally, FINALLY! in October of 2015 they saw something on an echo at OHSU. Of the two leaflets of my artificial mitral valve (the 3rd valve in the heart process) one was not opening all the way or at all. Could it be scar tissue or a blood clot? I was put on a higher dose of blood thinners to work on the clot theory but since my 3rd open-heart surgery almost 3 years prior had turned up a bunch of scar tissue signs were pointing more in that direction.
While at OHSU for that stay I spoke with my carcinoid specialist and my last heart surgeon. They had had a conversation with each other about the possibility of heart transplant. Well, why not!?! If my heart was going awry yet again a 4th surgery would be incredibly risky and would likely not be the last one needed. Why not just toss the thing and put in a new one?! So the ball was set rolling to get me set up to be on a transplant list. This is where things really begin.
We went to OHSU in November to find out more about what they needed in the way of preliminary testing and such. We met with Dr. Jill Gelow whom we really liked and found her to be compassionate and knowledgeable. She also studied up on my case, which is always a good sign. She said three things would need to be looked at and possibly addressed: lung blood pressure – if too high naturally I would not be a candidate for transplant, carcinoid metastases – if the carcinoid was beyond my liver it would be too risky to do transplant and antibodies – since I’ve had many blood transfusions in my life I could have too many antibodies to receive a heart without high risk of rejection. A catheterization was done to look at lung BP and while I do have a high BP Gelow felt assured that it was because of my heart issues. I did a blood test for antibodies. There are 2 groups of antibodies and I have 70% of one and 90% of the other which doesn’t leave much room for acceptance of someone else’s heart. The carcinoid assessment was still to come.
We went to OHSU again and I did a couple of breathing tests. Gelow gave the results I listed and she also told us that OHSU would not likely be able to do the transplant so things would be put into motion to see about getting us to Cedars-Sinai in Los Angeles. It was a HUGE shock. We were able to meet with a social worker but it almost created more questions than it answered.
For another month we waited until we heard anything about what was going on. Cedars decided that before meeting me they wanted a test done to see the status of my carcinoid cancer. It made sense and I was happy to do the test as I was curious myself. An octreoscan was decided upon but we weren’t sure where it would take place. I had had this scan 16 years prior when I was diagnosed. It combines octreotide, a drug that seeks out carcinoid tumors and works to subdue their toxin production and a very small dose of radiation that piggy-backs on the octreotide. An injection of the combo is given and after 24 hours the first series of scans is done. It’s a slow scan that gathers the waves of radiation emitted by the tumors. The tests are repeated a second day. Supposedly the tumors will “glow” and be identified wherever they may lie in the body.
Finally we found out that Memorial, my local hospital, could order the radiation and do the test. It was so much easier to do it locally!
While waiting to get the test done we had a meeting with some friends to discuss fund raising ideas. I think some people were able to come up with more from themselves than they expected. A groups of folks at Inklings, the book shop I’ve been working at or associated with for over 11 years, came up with some amazing and helpful plans. It felt good to get the ball rolling for if we were to move to LA we would need a solid financial foundation.
Ian and I went to OHSU in early February to meet with the transplant doc. This time we met with Dr. Christopher Chien. He didn’t seem to click quite like Dr. Gelow. First, he admitted to not knowing much about my case which is probably the last thing you want to hear from a doctor taking care of you. He said Cedars had test results and so far things looked good. Then after examining me he said that he would defer to Gelow about our appointment and anything that came up in the future. It felt like a wasted trip and as if he was some sort of medical babysitter just there to make us feel like something was happening.
In reality we were becoming frustrated with the length of time for progress and the lack of communication from OHSU which in other departments was normally so good about being in contact and taking care of my health concerns. The octreoscans had been done January 21st and 22nd, we hadn’t heard the results in the first couple of weeks of February and really had no word from the social worker either. It was beginning to feel like we were on our own, floating. Our impression had also been that the NFT (National Foundation for Transplants) was going to participate in raising funds in some way, yet we had no evidence of that being the case. After having done a huge push to raise funds for my 3rd open-heart surgery in 2013 we felt as if we had already drained our resources and because we aren’t greedy people we began to feel self-conscious about how people must see us. Even though having a major health crises on an average of once a year and THEN finding out about having to have a heart transplant in LA, of all places, isn’t usually something even wealthy people have an easy time with it still felt beyond awkward to ask for help.
On February 16th I got a call from Dr. Chien. He said that the octreotide scan was read by Cedars and turned out to be receptor negative. ?!?!??! Here’s what that means (as I understand it): Carcinoid tumors, which are endocrine tumors, have receptors like an electrical outlet. Typically octreotide fits into that outlet like a lamp plug, easy peasy. On rare occasions carcinoid tumors don’t fit with octreotide, like when you take your American lamp to England and it won’t fit the socket. So, what Cedars was saying was that I’d taken my English outlet to America (even though that sounds more like a euphemism rather than a metaphor!). The ridiculous thing is that I took injections of octreotide monthly in order to control my carcinoid symptoms and keep the tumors quiet. So, I did well over 150 injections that didn’t work? Ah, but they did! And I had actually been tested for carcinoid in 2000 using the octreoscan as a primary means of diagnostic testing. The other thing, well, other things, that helped my cancer symptoms were having a successful chemoembolization in 2009 that knocked out 85% of my tumors followed by a successful primary tumor removal in 2012. The way carcinoid works is that when the primary is removed, the only tumor that can create more tumors by the way, the metastasized tumors begin to “lose the will to live,” as I put it. In other words, they shrink up. Between the 7 years since the chemo treatment and the 4 years since the surgery isn’t it more possible that the tumors have disappeared rather than have suddenly become “unreceptive”? I’m not going to get too excited (well, I’m going to try not to get too excited) and think that I’m in full remission buuuuuut… I’m not going to rule it out either.
Unfortunately though, that “negative” test for Cedars means that another test would need to be performed. This second test is called a Gallium 68 PET scan. The GA68 scan is only available in a handful of places: New York, Louisiana and Stanford University in California, I think maybe one or tow others on the east coast. It’s also offered in Europe and Australia but… nope, that would be a bit impractical to grab Rick Steves and head to “the continent” right now…. It wasn’t until I was in the hospital at the end of February for the ovarian cyst rupture outlined in my last posts that we found out that Stanford would be the place we would try for to get the GA68 scan.
PS Dr. Chien ended up taking charge of a whole bunch of details for some reason. He spoke with Dr. Pommier, my carcinoid specialist of 15 years at OHSU, and understands that he is BY FAR more qualified than the endocrine doc they have at Cedars. What Pommier actually said to me was, “Chien knows I have a ton more expertise in carcinoid generally and in your case specifically and he really respects that.” And Cedars has decided before getting conclusive scan results that the transplant will be a DOUBLE transplant of heart AND liver! Right now it sounds like they’re thinking that it’s both or nothing but NO ONE even talked to me about how I felt about that possibility or the risks or anything thus pushing Ian and myself further out into the abyss.
I wrote to Pommier and asked him his opinion about everything. He thinks it’s “absurd” that the octreotide results would mean I was receptor negative. He also thinks it’s silly to go to a GA68 scan when it uses THE SAME RECEPTORS. (Did you catch that? I’ll repeat: The GA68 PET scan uses the SAME receptors as the octreoscan…. *cricket cricket* Yeah… yeeeeah.) It’s also known to give a false positive for pancreatic cancer! He suggested that we just go ahead with whatever testing Cedars wants to do and then pick our battles once they see me. Battles like a double transplant which seems like jumping the gun before they even know if I still HAVE liver tumors! He said specifically, “We certainly need to think long and hard before we put you through a double transplant, just to name one issue. I am not going to risk losing you to really risky operations if there is another way.” I can’t tell you how grateful I am that this super-human genius is on my team…
As you probably know from previous posts we were in Pittsburgh at the beginning of March. We tried to take a break from thinking about too much else besides family until we got back to Yakima.
Once Stanford had been decided upon for the GA68 scan some odd things started getting stirred into the mix. OHSU doctors were concerned about “using” Stanford for the scan and not anything else. They didn’t want to burn bridges. I thought, if Stanford has a scan that only exists in a few spots in the country it doesn’t really make sense for their “feelings” to get hurt doing what they’re supposed to do, helping the sick! There was talk about transferring the transplant to Stanford… WHAT!?!?! Cedars was offered in the fall by OHSU for a reason. At first Ian and I were shocked about relocating but the more research we did into transplant hospitals the more we realized that Cedars performs almost 2 times the amount of transplants than any other institution in the country. There are good hospitals on the east coast but the competition for organs can make it difficult to get what you need as a patient. My case is highly difficult even if you only consider one factor, antibodies. Cedars knows how to adjust them somehow to make transplants more accepted by the recipient. But with all this knowledge OHSU was trying to talk to me about going to STANFORD!?!? And for what? Was it actually to transfer or was it just to get the scan and not upset anyone then make an “oh, I changed my mind” getaway??
Phone calls and emails supposedly went back and forth between Stanford and OHSU. I’m only going by what I’d been told by the amazing transplant coordinator I’d been working with, Suzanne. She has pretty much been my sole contact about what is going on at any time. The problem is that often the doctors are the only ones privy to details and she regularly has to request the information for me and for herself. We both get tired and frustrated by it. The transplant team has a weekly meeting but sometimes there’s lots of talk and no one to carry out the details.
Finally at the end of March Suzanne called me one day to say that Stanford had accepted my insurance and would be calling me to schedule the scan. I played phone tag with Stanford the next week (yes, it took them a week to call me) and finally talked to someone. She repeatedly asked me if I would be transferring my transplant or if this visit was for a second opinion.
“No. This appointment is only to get the Gallium 68 PET scan. I was told everything was arranged already..?”
“Oh, well I don’t know if we can schedule just for the scan…. So, this isn’t to change transplant locations or get a second opinion?”
“I can’t make arrangements for anything further until I know where my cancer stands, hence the GA68 scan!”
“Oh… ok, I’ll have to talk to the doctors and call you back.” And there went another week…
Later I got a call from a different department for scheduling and played phone tag with them until I left a message asking that if they got my voice mail again to leave a time when I could talk to a real person in my return call. Yes, I got snippy but one of the times I called back the person on the other end didn’t know the “Juliette” I was trying to reach. How big is the new patient/GI oncology scheduling department anyway!?!
Finally after letting Suzanne know what was happening she gave me the name and number of the “right” person to call. I spoke with someone named Dee and she told me that I would have to see Dr. Kunz first to decide if I qualified for the scan (this was the first time I heard there needed to be a qualification!) and then I’d have to come back for the scan… so, 2 trips to California for just the scan?! *sigh*
“Oh, and Miss Applebaum, your Medicare has been approved but we cannot use Washington Medicaid. So, your appointment will be 80% covered.”
“Are you serious? I had been told that my insurance had been approved!”
“Yes, the Medicare is approved but we don’t have a contract with Washington’s Medicaid. Who told you it had been approved?”
“Stanford gave that information to the coordinator at OHSU. Look, there’s no way I can afford 20% of either appointment.” The scan alone is at least $4000 and we would still have to cover lodging and travel expenses.
“Yes, I understand and that is a valid concern. We have patients come from all over the world for this scan and sometimes there are out-of-pocket expenses. Let me talk to our financial department and see what they have to say. Is this a good number to use to call you back?”
Good LORD! More back and forth?!? I was about to scream knowing that without the scan Cedars would never even talk to me. We have a bit of money in our NFT fund but it was supposed to go toward living and medical expenses once we got to LA. By draining it ahead of time we’d have to start all over on an already slow going fund drive.
Now, I know hospitals write things off and 20% isn’t much for a big institution. I also know that hospitals often have financial resources to help low-income patients. I wondered though, why is it that Medicaid was willing to cover my expenses in Portland, OREGON and yet not in California? I believe OHSU had been decided as a specialty hospital providing care that I can’t get in WA. Wouldn’t that work with Stanford? Suggestions were made to us by many to call a congressman or contact an insurance commissioner. I wanted to wait to see what Stanford had to say first.
Before getting a call from Dee I got word, I will not say from whom, that the oncologist at Stanford was very interested in my case and there was just about a guarantee that I fit the study perfectly. I also heard that the appointment’s 20% could be written off but the scan would need further discussion. Perhaps I could sign up for MediCal as my secondary before the scan. It was something that would have to be done in order to be seen at Cedars anyway so if the GA68 was a go maybe early MediCal would make sense?
Dee called back and we made arrangements for the appointments. Apparently I would also have to be seen by a cardiologist there as well. After getting so frustrated with just reaching a date I decided WTF, I really don’t care. If talking to one more doctor will get things moving, fine, I don’t give a crap anymore. I will be seeing Dr. Kunz on May 3rd and the cardiologist May 4th. Now all we have to do is book plane tickets, rent a car and figure out where to stay and how to get around. No biggie. (Oy.)
If you have trip advice, car rental coupons (I belong to AAA so I might have some of my own), flight miles to donate and/or ideas on places to stay in the Stanford/San Francisco region please, please do us a solid and pass the info along to us. Sometimes I wish I could split myself in two so that one of me could be sick and the other could take care of appointments and arrangements. If only I could get paid for this job!
Thanks for reading, for asking how we are, for donating and for thinking of us. I’ll speak for both of us in saying we’ve never done anything so draining and difficult. Every little bit of help adds up to a huge heap. Thank you for joining in. – Mimi (+ Ian)
So, now that you’re familiar with lots of the goings on that brought us to March 10th or thereabouts I suppose it’s time to fill you in with what’s happened in the past month. A lot and yet not enough has happened in these four weeks.
When we got home the place was out of control with pets! For some reason Ollie, our white cat with black spots, seems to lose all of his fur many times over whenever we go anywhere. Both Ollie and Amaya, our black kitty, were in need of some attitude adjustments as well. Our wonderful friends had taken good care of them but when left alone things go bonkers! Ian worked immediately at trying to find our house which had been buried under weeks of Ollieness.
As Ian was getting things sane again I was working on healing. For some reason in the first few days after getting back home my pain increased and stayed there. Dilaudid is normally powerful enough to take care, or at least, take the edge off of whatever pain I experience from medical issues but it wasn’t working. And what’s worse, it seemed to be keeping me up at night. In Pittsburgh I had started just taking Tylenol once or twice a day and it seemed to have a much greater impact.
I looked up other women’s accounts of ruptured cysts as I had put in my Part I blog post in an attempt to find out how long it might take for the blood in my system to reabsorb. The time period was kind of broad, 1-3 months, and since I’m a person on blood thinners I risked being on the higher end of the spectrum.
I also began having the most obnoxious symptom, night sweats. I would go through 2-3 shirts a night as I was mostly sweating from my upper body. What was causing this?! A change in the temperature? Recovery? I was pretty certain it wasn’t early menopause because it was only happening at night although I was having chills during the day… No fever though.
I filled my days with coloring books, knitting, movies and Tylenol. The pain was at such a level that I would keep checking the clock to see when I could have another dose to calm things down. I kept to the limits listed on the bottle and worked out a 9am/3pm/9pm schedule. The last thing I needed was some sort of liver damage!
Eating was becoming a huge task. I was so nauseous in the mornings that I stopped consuming anything except for tea before 1pm. Lunches and dinners were meager but absolutely everything that entered my digestive tract – solid or liquid – made me regret being conscious. The pain and the nausea made food less and less attractive. When I’d go to bed at night still having two meals in my body it would hurt so much that I’d managed to invent my own kind of Lamaze breathing to try and gain control of it all. Tears made a regular appearance and I could tell that Ian was struggling with the helpless feeling of it all. I was too.
Not even a week after we returned home I went to see a nurse practitioner at my GP’s office. Dr. Kaplan was out so Shannon Neer took a shot at trying to help. She examined me and suggested I get a blood draw to see if I was still bleeding. If I wasn’t she’d schedule a sonogram to look at my ovaries again, if I was she’d arrange a CT and probably have to stop anti-coagulation. My INR or blood thinness was incredibly high (5.9 instead of the 3-3.5 it’s supposed to be) most likely because I wasn’t eating much. The blood test came back with normal H&H (hemoglobin and hematocrit) which meant that I wasn’t bleeding.
Two days later I went for a sonogram at Memorial Hospital. Now, perhaps you ladies know what a trans-vaginal sonogram is. My guess is that many do not and that most men do not. I won’t go into detail but needless to say (I’m sure) if you are in pain it is a very “unpleasant” external and internal test. It ain’t too much fun if you’re not in pain, either. I got the results the following week and things looked fine – one cyst was smaller (the one that had ruptured) and the other remained unchanged but was “echolucent” meaning the sound waves went through it. This was good news because before I had been told the second cyst was a dermoid cyst… I’ma let you look that up… Yeah, not very awesome. However, with the second cyst being full of fluid I was at risk of having that one rupture someday as well. (Crap.)
I tried the weekend following the sonogram to work a bit outside. I was becoming really weak from inactivity and it bothered me. I only pruned back some of our rose plants while Ian did raking and a bunch of stuff I couldn’t even imagine doing. I was slightly bent at the waist, reaching and clipping with hand shears. The next morning I was in so much pain – everywhere! My back, my belly, my legs, even my hand that had been clipping was so sore it was practically burning. Things tamed down after a bit but my hand took about a week. Ridiculous.
I began presenting a bit of a low temp when I felt chilled. It wasn’t much, about 99-100*, but it made me wonder if something was changing.
I tried going to work for a few hours and suffered a bit for it. It’s not that I did anything at all but it wore me out and I had incredibly bad night sweats that night.
I let my doctor know about my fever and increasing pain. He was heading out of the office for a week but wanted me to see someone and get another blood test. This time the test would look for inflammation markers. Inflammation markers?!? That’s a thing? I wondered why we hadn’t done that to begin with!
So, a week after the sonogram I saw Shannon the nurse practitioner again and told her what was going on. We did the blood test and I assumed everything was fine because I didn’t get a call. I didn’t, that is, until about 5pm. Shannon sounded like she was trying to control her speech as she told me that one of the markers had come back very high and that I needed to get to the ER within the hour for a CT and blood cultures. The high marker could be a sign of infection. Ian was sitting next to me and I told him what she asked us to do. I took a deep breath and said, “So, maybe I’ll have to be in the hospital overnight for antibiotics or something. Maybe this will finally get taken care of.”
When I finished packing a bag I had a bit of a dizzy spell and sat down. Ian rushed over and I could tell he was terrified. “What did you do?” I asked, “Did you look it up? Don’t tell me, let’s just go.”
Ian and I like to be informed patients. It always helps to have an idea of risks and to have a list of questions ready. Sometimes, though, it can make things a bit worse. Like the time I wanted to see what the scar would look like from my vocal cord reconstruction surgery and a picture that came up was of a woman with a wound that looked like someone had tried to kill her with a garrote! (Her post-healing pics were great but I wasn’t even able to see them after the post-surgery ones!) Although he had Ian didn’t really need to look anything up because an infection in the gut could lead to peritonitis or sepsis/septicemia. A cousin of Ian’s that had done so much to help us after my last heart surgery, even though I had never met her, died from developing peritonitis which cascaded into to sepsis after a routine surgery lead to a cancer discovery. I knew in the back of my head that he was thinking of her and that I must not if I was going to keep it together.
We went to the ER. It was the worst time of day and there seemed to be so many more critical cases around me. Even though my orders had come through it didn’t speed the process by any means. The nurse assigned to me, Vanessa, wanted to start an IV both for blood draw and for the administration of contrast during the CT. I have a port in my chest (it’s like a medical “outlet” into the blood stream) but oftentimes it can’t be used for CT scans because it’s not a “power” port. Power ports came around after I had mine put in 13 years ago (that’s a really long time to have a port!) and allow high pressure things like contrast to be used. Had I known about Vanessa’s phlebotomy skills I would have either insisted she use the port for a blood draw or get another nurse… or both.
AGGKKK!! She was HORRIBLE! I told her before she even touched me that I was a difficult draw. When I say that I MEAN it! I have humbled the most experienced lab techs, IV therapists and nurses. She decided to go for some odd vein on the underside of my right forearm and I looked away and she set to work. Yowtch! She dug a bit but said she had blood return… oops… what happened? She tried to flush with saline and the vein collapsed. She’d have to try another spot. Awesome. She left to get more supplies and I looked down. I’m not sure what she did but there was a splatter of blood going all the way down to my hand. Good lord!
Attempt number two was about in the middle of my left forearm on the top – another weird spot. I looked away and she began. Ian had walked over to hold my right hand. I’m not fond of blood draws for this very reason because people don’t believe me when I say I’m a hard friggin’ draw! Dig dig dig! I could tell she was trying to get the vein and it was just scarred up and rolling away from her. (It’s the latest game craze! Chase the vein!) Normally I just take a deep breath and try to make it through the process but I couldn’t help it, “Goddamn!! You’re REALLY HURTING ME!!” I said with a raised voice. “I got it, I got it…” she replied. Already I could tell it was a bad IV because it ached and I told her so. “Well, just wait a little bit and see if it still aches in a few minutes,” I could tell she wanted to get out of there as soon as possible. She taped it up to high heaven and didn’t even bother to flush it or attempt the blood draw before she quickly exited. I looked down and, worse than the first time, my arm was splattered in blood, the monitor cord next to me had blood on it and, looking down, there was 3″ wide puddle of me on the floor. I think she missed her calling as a bloodletter!
A phlebotomist came in from the lab a bit later and said she needed to do a blood draw. What!?! I should have directed her to the red pond on the floor… She told me that there were going to be two culture draws and that they had to be in separate places. (I should’ve said something about my port at this point but I figured a member of the medical staff would have suggested it if it were viable because no, I’m NOT a doctor I just play one on tv…) I told her I was difficult, I told her the nurse abused me… As I did so I offered up site #1 as exhibit A and we could both see very plainly that Vanessa had managed to give me a nice, plump hematoma (aka lump of blood under the skin). She promised that she’d be gentle and use a good spot. *sigh* Here we go again…. But no! She found a vein on the top of my right wrist and I barely felt more than the single, I said SINGLE poke. What I did feel most was the creepy sensation that my hand was being dehydrated as she took out 30ml of blood, enough for a “rainbow” of tubes
(meaning about 5 tubes, one for each of a variety of tests) and the two blood culture bottles. It was a lot of blood. She was nice enough to bring me a warm pack to help with Vanessa’s handiwork.
The CT went well and another nurse used my IV to draw the second blood test. She did a good job and Vanessa barely showed her face again. The doctor, who didn’t know why they hadn’t used my port (ACK!), paid me a visit and told me that everything looked fine. Apparently one of my inflammation markers (CRP or C-reactive protein) was quite high. Normally it’s about 0-1.5 (1.5 might be a small backache, I’m guessing) and the doc thought from the way I was presenting that mine might be around 3. Turns out mine was actually 19.3!! So, that’s why Shannon had sounded so wired on the phone! And that’s why they had thought there must be infection. After a 5 hour “visit” we were allowed to leave. Hooray for Friday date night….. meh.
Saturday was a good time of nursing the regular ol’ pain plus the new four holes in my arms (3 from the ER, 1 from the doctor’s office). I managed to get a bloody nose that kept going for about an hour until I remembered that an ice pack could help. A couple days later my gums and the other side of my nose were bleeding. My INR was up to 5.4 and when I spoke to the pharmacist managing my Coumadin I told her I was taking Tylenol. It was the only thing I could think of that was different but I didn’t bring it up prior because Tylenol is supposed to be one of the things anti-coagulant patients can safely take. Turns out it isn’t exactly. Up to three doses a week are fine for blood thinner patients but more than that and their INRs can become elevated. Here I was taking a week’s worth a day and no one told me the risks! Supposedly most doctors don’t know of it’s risks. Doesn’t that just make you feel all warm and safe inside?
More pain and projects… Here, I’ll freshen your palette with a list of the movies we’ve been distracting ourselves with recently!
There! That helps, right?
Now back to the not-so-fun stuff… I keep trying to go back to work but thus far I’ve only managed a day a week. My clothes don’t fit because just about everything on me has shrunk from not eating. However, because of the inflammation my belly looks as though I’m about 3-4 months pregnant. I really hope pregnancy doesn’t hurt as much as this, ladies… I keep having to have a “diuretic day” each week because my body doesn’t seem to want to get rid of the fluids I put in until it’s forced. This can help with the pain but the last time I did it I felt completely weak and dizzy.
And then last Thursday happened. I missed my 3:00 dose of Tylenol and knew my choice was take a dose and hour and a half late and have to get up during the middle of the night for more or wait until 8:30pm to take my evening dose a bit early. I opted for choice two. Ian and I watched a hockey game and by the time it was over, about 6pm, my pain was terrible and I was horribly cold. I wrapped up in a wool blanket including my head and face and waited for some relief. Even the addition of a heating pad didn’t make a difference. I got under the covers with the wool blanket and heating pad and began taking my temp. It started out at about 99.5* and went up by a chunk every time I checked. I reached 100.9*, still cold, when Ian asked if I wanted dinner. It was getting close to 8:30 and I thought food would help with a dose of Tylenol. By 9 I was toasty on my own merit, full and my temp was almost normal. I still thought it was good that I had a follow-up with Kaplan the next day, though.
Kaplan seemed to think that was good too even though he didn’t know what to do with me. The rise in temp from one missed dose kept leading him back to some sort of infection so he decided to call the infectious disease guru of Yakima that he was associated with to see what he thought. The verdict was: 3 (thrrreee!?!?!) more blood cultures to be kept for a longer period of time. ‘Are you f***ing kidding me?!?! I had just had the first 2 cultures two weeks prior. Things weren’t worse they just weren’t better and yet you think there’s going to be something to grow in those cultures?? And why, for god’s sake, THREE!?! I’m not sure I have that much blood to spare!’ Well, that’s what I thought anyway.
After lunch I wanted to get things over with so we headed to Memorial’s lab. They were very friendly and accommodating. A woman brought me back, almost made some sort of Vanna White move to “present” the lab-draw chair (does that thing have a special name?). I recognized her but tried to put our previous, less-than-lovely encounter out of my head. It came back pretty fast though…
“Ok, let’s take a look,” she said as she turned my arm in her hand.
“I’m a really difficult draw so if you could use a small needle I’d really appreciate it.”
“Do you know how many years of experience this lady has!?!” said the friendly guy who had been at the front counter.
“She’s managed to humble a lot of experienced professionals,” said Ian. (Sounds familiar, right?)
The lady was eyeing a particularly hypnotizing vein that I have on the top of my right forearm so I thought it best to speak up, “That one may look good but I assure you it’s a liar.”
“Oh, yeah?” she said softly as she began prepping that very spot with alcohol.
….She knows what she’s doing…. She’s being nice and gentle… There won’t be a problem… I turned my head to the left.
“Here we go. Little poke.” I didn’t feel anyth… WAIT! Yow! OWCH!! WHAT!?!? HEEEYYYY!!!
“OW! That’s not a little poke. Please stop!” I said.
She took out the needle and placed some gauze over the new sinkhole she put in my arm. Another lady stepped up and the first one handed off to her.
“She’s afraid of needles,” she said to lady #2. Uh, say WHAT now?!? I’m afraid of needles!? HA!
“I’m not afraid of needles, actually. I’m afraid of people who keep digging in my arms,” I managed to say out loud. Ian told me later that the needle didn’t stop moving from the moment she broke skin. She managed to make about 6 or 7 tries in a few seconds… yeah, and I’M afraid of needles! If it hadn’t been so crappy I thought the whole thing would’ve made a really great comic strip.
Lady #2, Rosa, was a sweetheart. She had a thick accent and a job shadow. Job shadow’s are good, they put the pressure on to be the best at your job. Rosa petted my arm and grabbed a warm pack to put over Lizzie Borden’s attempt. She looked over my arm and kept asking, “I can go anywhere?” To which I responded, “Please avoid my hand if you can… And THERE!” as I pointed to the disappointing vein that had already been tried. She laughed and assured me she wouldn’t go near it but she ended up picking a strange spot just to the top of my elbow crook. I could tell she was having trouble getting blood to come out. She said she was only going to take 12ml instead of the full 20. I thanked her.
Luckily, we had learned from little miss “she’s afraid of needles” before she left that my port could be used for two of the three draws. Hallelujah!! Ian and I waited while IV therapy made their way to the lab. Because ports have the capacity to become infected hospitals are very cautious about who accesses them and this means it is always who has A LOT of experience accessing ports. In no time at all the IV tech had come down and accessed me. We decided to leave it accessed so that the draw the following morning could be quick and painless… my favorite word.
Ian was working the next morning but after a brief discussion we both felt that since it had been so long since I had experienced fainting spells and since the hospital was just a few blocks from home that it would be ok for me to drive myself! It was SO strange! The last time I’d really been driving much was back in October. I knew what to do, I hadn’t forgotten anything, but it was just such a bizarre sensation.
After the blood draw with an IV nurse that was very familiar with me, I decided to run an errand by myself. WHAT!?!? How crazy is THAT???!!! I went to the drug store, filled a prescription, got a few things I’d been needing but didn’t want to bother Ian with and came home. I wasn’t putting anyone out by giving me a ride. I got to choose how long I stayed at the store and which route to take there and back. I know it sounds dumb but when you have that ability taken away you can manage but it feels really good to get it back, even just a little bit. Ian acknowledged that he thought it would be good for me to do something for myself. He had gotten off of work early but didn’t come home in order to give me some “Mimi time”. (Man, did I hit the jackpot with that guy…)
And here I am now. I’m feeling a tiny bit better but I’m still going to see the infectious disease doc on Friday. It would be great to have some answers about what’s been happening and maybe some foresight into what to expect for the future. At least for this thing… I’ll have a post up soon about all that’s going on with transplant. It isn’t much and I’d be lying if I said it wasn’t frustrating. We’ll save that fun for another time, though, ok? Yay.
So, let’s recap what had happened in Part I:
The night of my Monday hospital discharge was more than a bit ridiculous. We were both incredibly exhausted. The lack of sleep which always happens in a hospital had caught up to us along with the grief of Tom’s passing and the knowledge of a long day of travel ahead. Our flight was leaving out of Yakima the next morning at 5:40am and we only had a handful of hours to pack, eat and try to get some rest. We managed the first two. No showers, no cozy-time with missed pets, no savoring any moment of being at home.
In the morning we briefly put ourselves together and our friend Frank took us to the airport. Frank has flown from Yakima’s airport before and remembered that showing up too early meant you had to sit outside – he recalled the doors opening at 5am. We got there at 5:10 and stood behind another passenger at the ticket counter to get things arranged. There weren’t any ticket agents. Before long the TSA guards began closing their doors. I ran with my backpack on to stop them – an effort that nearly made me pass out – and asked if they couldn’t wait for us to check in. “They closed the counter early!” shouted the woman that had been in front of us. “You’ll have to take that up with the airline when they come back,” said the guard. I was beginning to tear up and heard the guards laughing as they shut the doors.
Both Ian and I were in a panic.
You have to understand something about the Yakima “airport”, there is ONE ticket counter, sometimes only one or two people working said counter who also deal with prepping the tiny planes that stop there – although I think there are one or two other people to help with luggage – but when the plane is less than 50 yards from the ticket counter and there is a buzzer at the counter to ring for help it doesn’t make sense for the counter to close 40 minutes prior to the flight’s departure. Yes, I said THE flight’s departure because it’s usually only one plane at a time especially at 5am. And yes, I said the counter closes 40 friggin’ minutes prior to take-off. What they need 40 minutes for I’m not sure.
Ian and I sat there in despair for 25 long minutes as the plane was prepped just a little distance from us, as we heard the plane’s engines start and as it took off without us or the other lady waiting to talk to someone. I cried when it took off. I was so exhausted and so tired of horrible things happening I didn’t think I could handle one more. Once the engine sound faded two women came to the ticket counter.
The woman ahead of us talked to the first agent available and while she didn’t raise her voice she was assertive and upset. She claimed that she had been at the counter right before 5:00 and there was no one there. The agent disagreed and made no apologies about it. “How is anyone supposed to know that the counter closes 40 minutes before take-off?” asked the traveler. “When you buy the tickets online you agree to our terms of service to be here 90 minutes prior to departure.” Uh, what? I have NEVER read anything like that. On most airline tickets it says “boarding gates are closed 10 minutes prior to departure”. TEN minutes, yes. FORTY minutes?? NINETY minutes?!??! Mmm… NOPE!
When the other agent asked to help us Ian told her that we couldn’t wait for the next flight out because it would put us in at the same time as our flight leaving to Phoenix. “Then there’s nothing I can do. You’ll have to call the airlines.” (She had such a sparkling personality.) So again, just as the night before Ian called American Airlines and told them what had happened. He suggested that we just pick up our itinerary in Seattle if we could get there. AA was confused and said they couldn’t do that. When I heard Ian repeat their inability I broke down in loud sobs, I couldn’t help it. Right there in that nearly deserted f**king” airport I lost it. The worst of the ticket agents held up a box of tissues and I just gave a look like “are you kidding me?” Soon both agents were MIA again.
Ian went over the details again with AA and said, “so if I drive to Seattle we can’t just pick up our flight schedule from there?!” AHA! That made it clear to them! They had thought he was asking for transport to Seattle from them! So, YES! Yes, if we could drive to Seattle in time we could just begin our trip there. (I almost threw up from relief…) We had already had a ridiculous 5 1/2 hour layover at Sea-Tac in our itinerary and it only takes about 2 1/2 to get there by car. That would hopefully give us time to have Frank take us home, get in the car, drive there and get through security in time! But Frank was not answering his phone and another friend was already at work… Finally we got a hold of Frank and he came to get us full of apologies even though missing the flight wasn’t his fault.
While we had been waiting for Frank American had called Ian back and said that because the flight out of and returning to Yakima was actually through Alaska they were going to refund us the ticket costs. (American doesn’t have flights to our ridiculous “airport”.) It seems that Alaska might like to know why they were having flights rescheduled and ticket money returned for folks in Yakima. After talking to friends it seems they are so bad at that airport that many people I know would much rather drive to Seattle than ever fly directly out of Yakima! I think we’ll keep that in mind for next time…
The drive went well, the weather obeyed, we found a place to park unfortunately not realizing how far it was from the AA ticket counter. It was a LOT of walking for me after having spent two weeks just putzing about a hospital hallway. We got through the VERY long security line – it was like Disneyland, you kept thinking you saw the end! – and finally had a bite to eat for the first time that day. I won’t bore you with the details of our flights but we ended up landing in Pittsburgh at about 11:00pm, drained, exhausted beyond measure and yet still compartmentalizing for what laid ahead.
The plan was to be at the funeral home at 9:45am the next morning. We didn’t really know the details of everything that was happening, we just went where we were being told.
At the home we walked in with Ian’s mom, Barb, as the first few people to get there. She chatted with a dear friend and neighbor as we looked down the room and saw Tom resting. That’s what it looked like, just sleeping in a luxurious cream-colored satin bed. I was so relieved because I had been worried about missing the two viewings the day before. We had made every effort to try to be there in time but, obviously, couldn’t. While we had missed the hundreds of people (yes, hundreds) that had made it out that day we were still able to stand by him, look at him and privately say our goodbyes. Soon close family and friends gathered together to cry and embrace. Finally, Ian and I felt able to turn off the compartmentalization and be there in the moment with everyone. It was hard, it was a relief, it was surreal.
A few prayers were said before we all got in our cars to proceed, with Tom, to my in-laws’ church. Having purged some of our sadness the mood of the group changed as we gathered in the bridal room separate from the main church area. Ian’s mom, sisters, nieces, brother-in-law and boyfriend-in-law (sure, that’s a thing!) squeezed into the small room with us as we watched silly videos on everyone’s phones of Tom doing “Tom things”. What a goofball! We were laughing, telling stories and teasing each other – it seemed just as important as the tears and hugs and it made it feel like he was with us.
Once everyone was settled in the church we walked in as a family and sat in the front. The minister spoke for a while, a friend came up and read something, Tom’s sister came up and spoke off the cuff (and made us all laugh) and another young friend came up to read. One of the more touching parts of the service was when two members of the military performed their honors. Tom had been in the Air Force and had been one of the military men to help receive JFK’s body in DC on November 22nd, 1963. Taps was played and the flag was folded and presented to Barb. It meant so much to have that part of his life formally honored. The whole ceremony was meaningful for those that were religious and not so religious alike.
The buffet after in the large meeting room downstairs was what I had been looking forward to even though I didn’t realize it. People were more relaxed, introductions were being made, hugs shared. I got to meet even more members of my amazing surrogate family and saw similarities with the members I already knew. There were so many stories… Tom and Barb have always been very social people, they know all their neighbors and have been regular “party-ers” with friends and family since they met over 50 years ago. And with Tom being the kind of guy who pushes the envelope, for better or worse, the stories ranged from sweet to practically unlawful!
There was so much food but we barely got to eat because we were trying to touch base with so many different folks – many of whom had heard about our latest struggles and wanted us to know we were in their thoughts and prayers. As the last to leave we went back to the funeral home to gather some things from the viewing ceremonies.
There were so many flowers! And so many wind chimes! We were trying to figure out which ones to take home when Barb said, “Let’s just take all of them.” She also brought home a sheaf of wheat and a cross that had stayed with him during the viewings. And his rings were returned to her as well. There were flowers everywhere at her house even though Ian’s sister had taken some with her.
When everything stopped and we found ourselves not needing to be anywhere or doing anything it felt strange, like there was some sort of after-hum from a loud noise.
I had one errand to run and that was to fill the prescription of dilaudid that I was given with my discharge from OHSU. They wouldn’t fill it there because Ian had left my ID and insurance info at home – I had just been discharged, you would think they’d have it on record! It was too late to get it in Yakima when we returned so I waited for almost two days for pain meds. We went to Rite-Aid thinking that there wouldn’t be much trouble filling an out-of-state prescription at a national chain. I handed the very official Rx sheet to the woman at the counter and she gave it to the pharmacist. He barely even looked at it before coming up to me and saying, “I don’t get this requested from doctors around here so I won’t be able to fill it” and handed it back.
“You don’t get requests for dilaudid?” I asked as I gathered his traits: self-important, bloated, unhealthy and way too arrogant for a pharmacist.
That’s BS. Anyone going through surgery or chemo or with a painful chronic disorder gets pain medication prescribed. Was he refusing because I was out-of-state? Was it because we looked like drug seekers to him? (Anyone that’s ever met us knows we DO NOT fit the drug seeker profile.) It was only for 20 pills! And just because doctors supposedly don’t prescribe it that means you can’t order it into the pharmacy? I was so surprised and tired that I didn’t make a fuss. Instead we went kitty-corner to try our luck at Walgreen’s.
The pharmacist there was SO NICE and reminded me of a slightly younger, much more peppy version of Toby from “The Office”. He explained that my insurance only covered in-state prescriptions (not something that Mr. Pompous at Rite-Aid even checked) but he made sure. Then he said, “This isn’t a very expensive prescription though if you just want to pay out-of-pocket.” So for $13 and change he filled my Rx with the dilaudid he had on hand and I went home with some relief.
We spent the afternoon chatting and snacking with Ian’s sister, mom and niece. His sister told us that the pharmacist at Rite-Aid had been incredibly rude to her on two separate occasions when she was picking up prescriptions for either of her parents. I would not get in her way if she was unhappy about something so I know this guy had a bit of his own medicine given back. In no way is saying things like “your prescription will be done whenever I get to it!” ok for a professional pharmacist to do. Some people think they’re much more important than they are…
The rest of our trip was spent talking with family, running errands, eating and the occasional fun thing. We even finished a puzzle Tom had started when we were visiting in August.
Ian’s sister and brother-in-law have a bar called Shulligan’s and we all went for dinner on the 4th, Tom’s birthday. Since it was still Lent and it was a Friday there were loads of fish fry options. It was good to be together. I brought little birthday candles so we could sing happy birthday and each make a wish. More crazy stories and a little bit of booze and we were all feeling cheerful and melancholy at the same time.
Another night we went out with Ian’s other sister to grab some amazing Thai food. We also had middle-eastern and Italian with family. A girl could get used to having options!
Ian and I went to The Strip one day which is Pittsburgh’s equivalent to Pike Place Market in Seattle. It was fun to just walk around in the lively crowd and see and smell all the interesting food. We stopped at our favorite places: the Allegheny Coffee and Tea Exchange, the Mon Aimee Chocolat shop and Enrico’s Bakery – unfortunately Enrico’s cafe wasn’t open or we would have gotten some espresso.
It wasn’t long before our trip was over. Despite all the sorrow involved it had been such a joy to be with everyone and the closure was something we could not have achieved if we had stayed on the west coast. Aside from our very brief and unsatisfying stop in Yakima before attempting to fly out I hadn’t been home for three weeks. My body was suffering for it and I longed to recover with our furry children, a craft project and a BBC show. Spring was arriving and it was a good time of year to heal and feel rejuvenated… well, that was the plan anyhow.
I had forgotten to make mention that while in the hospital I was visited twice by professors with students. It is a university hospital, after all.
The first group was a rather large one of about 25 or so 2nd year students. Two of them came earlier in the day to ask permission and returned with the whole gaggle of them and their tall but crusty, country-vet-looking prof. None of them, including the instructor, knew anything about my health or why I was in the hospital in the first place. The prof, let’s call him “Tweedy” since I swear he was wearing a tweed sport coat like something out of All Things Great and Small, stood at my side and asked the students what they observed about my appearance. Pretty much all of the observations were volunteered by Tweedy since the students were too green to speak up comfortably. I smiled like we were playing some sort of parlor game that only I knew the answer for until he mentioned my skin color. “Hey!” I thought, “I’m Ukrainian and French, we’re this color by birth!” I run a little on the yellow… *ahem* olive side for those of you that don’t know what either Tweedy nor I were talking about… He also mentioned my “dusky” lips. I would have thought that a compliment if he didn’t make it sound like an icky thing. (I prefer “rosy” but po-tay-toe, puh-tah-toe…)
Tweedy listened to my heart and came up with even more conclusions. Boy, were they all over the place! Now to be fair I’m sure he’s an excellent professor and doctor when he has facts and tests in front of him. I am a very complicated case (you may have heard that before…) and all that racket going on in there doesn’t clarify one damn thing.
Each student reluctantly took their turn listening and I gleefully watched their expressions change from embarrassed shyness to “oh, what now?!”. They exited to the hall and I encouraged them to return to discuss things and actually find out a bit of the real facts about my situation. I briefly went over the carcinoid syndrome, the heart valve issues, the ovarian cyst rupture and our plans for transplant. Aha! So many things became clear to Tweedy and his students.
Perhaps it seems like a weird thing to enjoy an encounter like that with students… I’ve read about “freaks” in side shows that have great pride in what they do and who they are as well. I think when you can open someone eye’s, someone that has perhaps lived a sheltered experience either financially or with their health or the people they have met, it’s rewarding to change their perception of what they think they already know. What does someone with cancer look like or someone waiting for a new heart? I look at those students the same way that I look at the medical students I help with at my job; it’s so important to connect with the differences of each patient and each patient’s experience in order to get them the best healthcare possible. It makes me happy because they’re uncomfortable rather than cocky and arrogant (not that some of them won’t get there…). If someone is uncomfortable but wants to do a good job that means they’ll ask questions and really look hard for answers in each case. Arrogance leads to blindness and keeps a doctor from seeing their patient’s pain and concern. What’s the point of working one-on-one with patients if you don’t try to make a connection?
Later that day another professor stopped by. I had met this man, Peter Sullivan, almost 13 years prior because of my 2nd open-heart surgery which placed three titanium valves in my heart. Peter brought by about 4-5 students then and they all listened with a stethoscope that had 5 ear pieces! I got to hear it myself that day and was a little overwhelmed by the sound. Peter returned with 5 new 1st year, fresh out of the gate students to do the same kind of thing. He had told us more about his experience all those years ago and was interested to hear about everything that had happened since.
Oh, those students were sooo young and timid! They looked terrified to even hear about my health – although the fact that I told them I was an SP mentor might have freaked them out a little bit more. Peter spoke to them gently as if to keep them from running away and they eventually took a listen to my chest. On his way out the door Peter invited me to tour OHSU’s SP/Clinical Skills lab anytime. I’d love to but I’m not sure the students could handle it!
And my reward for seeing all these people and letting them listen to my insides? Well, besides the warm feeling of hopefully making a difference in their future careers I also got a warm feeling from the mocha that Tweedy brought as a thank you.
I’ve been wanting to post an update about everything that’s been going on the past 3+ weeks but truthfully I’m not exactly sure where to start or how much to include. I guess I could just start from the beginning…
On Thursday, February 18th Ian drove me to work just like any other day. I wasn’t feeling 100% – just a little crampy as we women sometimes do. I stopped off at my desk, checked email, went into the main office to get some files and chatted with some coworkers. When I got back to my desk my slight discomfort took a turn and became pain. Forgive me for the details (they won’t get too bad) but I thought I was just having really bad cramps and/or some air in my gut. I tried to carry on but found I couldn’t sit still, searching for a position that didn’t hurt. I contacted a friend to see if she might be available to take me home if things progressed and texted Ian at work to let him know what was happening.
I went upstairs at the medical university where I work as a last resort to see one of the DOs (doctor of osteopathic medicine) in the lab where hands-on treatment is practiced. She poked around and manipulated some muscles but I had to confess that nothing was really helping. She said, “maybe you do need to go home.”
Every bump and vibration in the car on the way to my house rattled through me like a jackhammer to the gut. I was beginning to wonder if something worse than cramps or gas was going on. I’ve had two bowel obstructions in the past, which were excruciating, and this was beginning to resemble those symptoms. But those obstructions were caused by the large tumor mass woven throughout my intestines, a mass which has since been removed. Aside from the pain no other symptoms mimicked an obstruction this time. What could be causing any sort of blockage, I wondered.
By the time Ian got home from work at 3 I was writhing about in bed without any clue as to what could be happening. He took one look at me and said, “I think you need to see a doctor. We need to go to the ER.”
Normally this statement, which comes about way too often in my life, upsets me because I know my complex condition is often mishandled or the details get fumbled up a bit at our small town ER, but this time I knew he was right.
Although the ER rooms were full we arrived just in time for an opening. I don’t really remember too much in a straight line once I laid down on the bed. I was hot, I was incredibly nauseous and the pain was increasing. Good lord, how much further could it go?! The doctor entered and poked around on my abdomen for a while which just about shot me through the roof. He was concerned that there was more pain in my appendix region, which terrified me, but they would need to do a CT to be sure. At last while waiting they began to treat my nausea: two doses of Zofran, one dose of Compazine and finally a dose of Phenergan which was the only one that worked a bit.
By the time they treated my nausea my hands and arms were tingling and, most frighteningly, I was beginning to slip in and out of consciousness. Ian told me that my eyes would be open and my pupils would dilate as I sat suddenly bolt upright. I can remember sitting up and wondering if I was hyperventilating because of the tingling. I wasn’t. My body was trying to figure out what to do with the pain I was experiencing, a pain I have never felt in my life even after three open-heart surgeries, bowel obstructions, major abdominal surgery, having my groin literally clamped to a bed in order to get a femoral artery to stop bleeding… nothing compared.
I wish there was some way to fully explain what was happening inside my head as this episode of extremes took over. What keeps coming into mind is the scenes in movies where the camera angle takes the POV of the person. Vision goes from dark and blurry to bright white light. Sound is far-off chaos with fractions of clarity, people loudly trying to break through the haze to instruct or check in. I remember mustering enough energy to whisper “help me…” at least twice although it might as well have been to a large empty room because I felt as if I were drowning in such intense pain, in overwhelming nausea and the feeling that my body was trying to let go of it all somehow. Like a slowly flickering light bulb I would check out and return to a situation slightly different within seconds. I had no idea what was happening or what would make it stop.
A large dose of dilaudid brought me back to reality. Ian thought I may have received around 5 or 6mg of IV dilaudid in the time I was in the ER – that’s a huge amount for such a short time. Whether it really happened this way or not I remember instantly asking Ian what was happening, were they going to do surgery… someone needed to contact OHSU if they were going to attempt anything! In some way I must have been keeping track of a little of what was happening while my body went into overdrive or at least bookmarked my concerns as I had begun to fade away to return to later.
The CT revealed that I had had a fairly good sized ovarian cyst (4.5cm – almost 2 in.) rupture on my right ovary. Cysts are rather common, ruptured cysts aren’t all that unusual either however painful they may be. I’ve since read other women’s accounts of ruptures saying that the pain was comparable or worse than giving birth. One woman had given birth twice without medication and said her rupture was by far worse. But beyond the pain was the danger for someone on blood thinners. I had already “lost” quite a bit of blood internally and the decision needed to be made whether to perform surgery or not. (Internal bleeding is said to be another extremely painful experience…) Thankfully the ER doc, who hadn’t been terribly consoling up to that point, decided to reverse my anticoagulation. The danger of doing so could be heart attack or stroke from the blood passing through my artificial heart valves becoming irritated or clotted. Ian insisted that the ER doc make contact with OHSU in order to sort out what to next do for me. Thankfully an OB doc that works with mine stepped in and said, “So, we’re flying you out of here to OHSU immediately. They’re on their way. We aren’t going to mess with all the complications you have going on. I want you to have your team working for you.” Relief at those words doesn’t even cover it.
I’ve been flown from Yakima to Portland before for a medical emergency. Four years ago after my tumor mass abdominal surgery I developed a blood clot on one of my mechanical heart valves. After three days in our local hospital without the doctors figuring out what was happening I began to fail in earnest. Thankfully Ian managed to get them to agree to send me to OHSU. If he hadn’t it’s quite possible I wouldn’t have survived.
I didn’t remember that flight but I remember the one that happened after this rupture. The EMTs were great and fortunately the pain meds were helping. Ian headed home to pack for us both and get a ride from our good friend to Portland while I took a ride in an ambulance to the airport. The plane was very small. I was loaded feet first with my head ending up toward the cockpit. There was medical equipment at my feet and two of the EMTs sitting in a front to back row at my side. I was belted in but still had enough room to reach up and scratch my dilaudid-itchy nose. (That’s what happens with me and good ol’ dilaudid. Itch itch! I’d take it over the pain any day, though.) Another ambulance ride through Portland and up the hill to OHSU’s ER.
It’s funny, after all the time I’ve spent at OHSU I’ve never really had to go to the ER except once for a bit of bleeding after some radiation. Since the hospital was full to the brim I had to stay the night in an ER room. Fortunately, they brought me a regular bed so that I wouldn’t have to try to sleep on a gurney. They did blood tests to check on whether I had stopped bleeding and I waited for Ian and Frank to arrive.
I asked Ian the other day how long we were in the ER in Yakima and his answer shocked me: 6-7 HOURS! I guess with everything going on and the fact that I was… well… a little “busy” for most of the time I didn’t realize how long we’d been there. Once arriving in the ER in Portland though time began to slow down considerably.
ERs are not a place to try to catch some zzzs. There was a woman a few doors down who was screaming like a mad person. She ended up following me to the first floor I was placed on and, according to Victorian standards, her hallucinations would have put her in the “madwoman” category. The next day in the ER a man was heard talking on the phone (we think?) about how everything was blowing up around him and the world wasn’t treating him right. He also went on to talk about some sort of theft and drug use he was involved in. He left in a wheelchair with only one leg. I can’t imagine the story connected to how he must have lost the other one.
Ian and Frank arrived late and stayed a while to make sure I was ok before leaving to get a hotel room and a bit of sleep. I must have slept a little myself because I don’t really remember much except that my doctor’s name was David Jones (just like the Monkee and the pirate!…and actually, David Bowie’s real name – whoa!). I took a shower in the morning – which was as lovely as a private hospital shower could be – and was moved right after to a general ward on the 5th floor, 5C.
Ugg, the 5th floor – a general medicine floor and pretty archaic as far as OHSU standards go. I had been put in a room on 5B after the whole blood clot issue but Ian made a phone call to get me out of that crowded, noisy and bright shared room into a private one much to some of the nurses chagrin. (Seriously, if looks and rudeness could kill!) Unfortunately, this trip could offer no hope of a private room in the immediate future. My roommate, who was already there, got the larger “half” with the windows. My side was cramped and had just enough space for the slender bed, a path just barely wide enough for my IV pole and a chair shoved all the way against the wall with my rolling hospital table/tray – all-in-all about 7-8′ across and in the dark.
A visit from my friend of 20 years (!!! – we realized how many years it’d been when my nurse asked us), Liz, came to see me bearing all sorts of wonderful gifts: a coloring book, colored pencils, beautiful yarn, an inspiring (and sad) mixed media biography and a lovely piece that her mother had crocheted which she suggested I sell or use to raise funds. (Thanks Liz! xo)
Roommate was having a rough time of things. She seemed to be dealing with a new diagnosis of rheumatoid arthritis and it was probably the most intense thing to ever happen to her. The medicines made her ill and weak and she was very tearful. With the visits from the nurses and Ian and Frank she caught a gist of my experience and wished me well before she left to go home on Tuesday. I left that evening to go to my own room. Ian had only been able to stay two nights over the weekend before Frank needed to head home. Ian said as soon as I was able to get a room of my own he would return as OHSU allows a relative to stay with the patient in a private room.
Late on Tuesday the 23rd I was moved to 11K in the luxurious Kohler building, one of the newest additions to the OHSU hospital. I’ve stayed on both 13K and 11K – the cancer and cardiology floors respectively. The view of the Willamette River and the east-side of Portland is fascinating, watching the tram trek up and down the hill is meditative, it is private and usually quiet and the hallway is a loop that can be shorter or longer depending on which cross hallway you take making healing go faster.
Ian came later the next day with more things for me and we soon got set into our usual hospital routine. There were twinkle lights above the head of my bed to add a soft glow to the room for nighttime vitals (unfortunately the vampires still had to turn on the lights for blood tests at the pre-dawn hour). I also put an electric candle on the ledge in the bathroom to make it look more homey. My coloring book and knitting were set out and my homemade cashmere sweater blanket covered my bed. All we had to do was endure the wait while my blood thinness returned to a safe level.
At first it was endurable, boring as hell, but endurable. Since I had heparin (an IV blood thinner) going through the port on the right side of my chest they had to take blood from my left arm to make sure it wasn’t contaminated. After 4 blood tests every 24 hours my left arm ended up looking pretty beat up… And I was woozy. The loss of blood and the pain meds made me feel as if I were either on a boat or just got off of a fast elevator, constantly! Even in bed I felt as though I was bobbing up and down, side to side. I was fine with eating at first but my stomach shrank and semi-constant nauseousness jumped in.
And then late Thursday evening, a week after I had arrived at OHSU, we got the call that Ian’s dad who had been suffering from ALS for a couple of years was in the hospital. That is never good news with an ALS patient but we kept hoping everything would be ok. Very early the next morning we got another call from Ian’s sister saying that Tom had passed away. It was a blow. We had prepared ourselves for the possibility in the near future but this seemed so sudden. Soon arrangements were made for a viewing on Tuesday and a funeral ceremony on Wednesday. Would we be able to make it so that we could spend such an important time with family? We cried, we spent time in silence and then, as Ian says, we compartmentalized. It was really the only way to handle everything that was being thrown at us.
On Friday my INR was still so low – it needed to be between 3 and 3.5 to be a safe normal range for someone with three mechanical valves but they would let me leave once it reached 2.5 since I have a monitor of my own at home. It can take up to three days for a change of Coumadin to make an effect. Heparin, while delivered constantly via IV is only good while it’s connected. Somehow they’re able to tell the difference between how my blood is affected with each blood thinner. (Don’t ask, I have no idea although I think I had a better understanding at one point…)
We waited impatiently through the weekend. My amazing friend Suzanne (another friend that goes back over 20 years!) had Philly cheese steak sandwiches delivered to my room. We had visit from a fellow Pittsburgher who knew Ian’s parents. We went “out” – me in a wheelchair with my IV pump and Ian pushing me around – to the balcony, to the pediatric Doernbecher building, the cafeteria, we even went into the creepy looking VA hospital that could be seen looming outside my window on 11K. Once, in 2002 when OHSU was building new wings (like the Kohler building), the hospital was too full to let me have a room after my 2nd heart surgery. I stayed in the VA in a teeny tiny, 3rd-world like room and filled with fluid (hence the discoloration scars on my legs) and waited to heal from having three valves replaced with titanium.
When Monday arrived my INR was still too low but they vowed to try again at noon. It took FOREVER to get the results but the docs felt it was safe enough to let me go knowing how important is was for us to get to the east coast. We were finally able to get on the road around 4:30. When we reached Goldendale we both had phone messages from the airlines letting us know that our flights to and out of Chicago the next day had both been cancelled. WHAT!?!? When we got home Ian called American Airlines to try to figure out a different route but because of weather and flights getting cancelled all flights, including those with other airlines, were booked solid. AA was very kind and tried to do everything they could but it looked like we were going to miss the viewing. I was worried about having closure without either of us seeing Tom/dad one last time.
That’s so much detail for right now… I’ll write a part II and post it soon.
We updated our Facebook page on Friday with the latest of what’s going on. Here’s the post:
Hello everyone, just a bit of follow up on the blog post Mimi wrote about our turn of events leading us back to OHSU in Portland last Thursday. Quick recap: After having severe and increasing abdominal pain Mimi went into Yakima’s Memorial Hospital where they found a burst ovarian cyst was the cause, which is exceptionally complicated with her being on blood thinners. She was flown to OHSU that night where they are better equipped and experienced in handling her complexities.
It was tricky but the bleeding stopped over a few nail biting days and she stabilized though we did discover that a small clot had formed on her artificial pulmonic valve. That’s always the big scare when they need to reverse anticoagulation in situations like this where it’s more important to clot and stop the bleeding than it is to worry about disturbing the function of her mechanical valves. The good news is that the clot is small and new so being back on blood thinners should slowly break it up and things will start moving again the way in which they should.
Other than that Mimi has quite a bit of extra fluid on her that they are slowly taking off through diuretics. The extra fluids were/are necessary since she lost quite a bit of blood and her overall blood volume is pretty low. So until her body recovers and starts making new platelets having a little extra fluid is important.
We were told this morning that they will continue monitoring Mimi through the weekend and getting her Coumadin back into a therapeutic range so we can go home; hopefully Monday or Tuesday.
On the transplant front thankfully none of this will effect our plans moving forward. It’s just going to slow things down a little while Mimi takes time to recover. Coinciding with that we’ll also be taking a brief time-out to be with my family in Pittsburgh for a few days following the news of my father’s passing away due to complications from his ALS. It’s a truly difficult time and we need to take a brief pause before marching on.
Next up will be a Gallium 68 PET scan that we’re going through the hoops of getting set up through the right medical facility that actually offers the scan and making sure insurance covers it. It appears for now at least that we’re shooting for the end of March to make that happen.
Thanks to everyone for your continued support.
As Ian said, we will be heading home to Yakima to immediately turn around and make our way to Pittsburgh. We’re more than just a bit overwhelmed right now. Thank you to everyone who is checking in and especially to those holding down the fort at home. As much as we would love to pause time for a moment to rest and collect ourselves being with family is our primary concern. Fingers crossed that the chaos calms down to a low roar soon. xo – Mimi