Hello again, friends. Hopefully you’ve had time to enjoy a bit of summer since the last time we talked (aka I talked at you). It’s hot here in our neck of the woods but we’re really fortunate to have a house that stays pretty cool without AC. (It’s called “trees” and I highly suggest planting as many around your house as possible because trees are great for so many reasons!)
So, let’s get back to the “great” time Ian and I had in our last trip to OHSU so that we can move on to more interesting topics.
As you may remember my transplant doctor, Dr. Gelow (pronounced GEE-low) and her right hand lady, Suzanne, came to my aid and got me an appointment to have my IUD replaced in OHSU’s Women’s Health Clinic.
On the 19th we drove over to Portland and enjoyed our room at McMenamin’s Edgefield hotel. Because we’ve stayed so many times and they have a frequent visitors program we ended up getting our room for free! And what a room! We had a bedroom and a lovely “living room” on the corner of one part of the building. Our windows looked mostly into the trees and it was deep green and cool. Note I did not say that we had a bathroom. That’s one of the quirks of most McMenamin hotels. Since they’ve been put into repurposed and usually very old buildings there are communal bathrooms except for a very few special accommodations. Now this doesn’t mean that it’s like showering and doing your business at the Y. Instead there are clusters of individual bathrooms all together in different parts of the hotel. Each bathroom has a shower or tub, toilet, sink and counter – everything you’d need and all to yourself while you’re in there. See, no big deal.
We walked around the grounds where they grow the produce that goes into the restaurant’s food and, I believe, many of their beers and spirits. They have a little, tiny golf course (which we’ve never used) and a couple stages. They ALSO have a spa with a salt-water soaking pool outside. After we rested and had a lovely dinner we went to the pool. Because there happens to be a bar at the pool the crowd can sometimes get a little rowdy. Doing bellyflops in a 4ft. deep/15ft. wide body of water is probably not the best idea, nor is it a good time for all the sober people trying to relax. Luckily our crowd that evening was mostly above 50 (not that that’s any guarantee) and in couples (again…). Everyone seemed to behave themselves for the most part.
The next day we headed to the upper campus at OHSU. My first appointment was down at the water but my IUD placement was at the top and it seemed a better idea to park where I wouldn’t have to walk far to get to the car. We ran into Suzanne at the tram stop and chatted all the way down, then saw her immediately after with Gelow!
The appointment was simple, we were just checking in, making sure that her communication with UPMC in Pittsburgh had me all set up, did a bit of paperwork and said our goodbyes with lots of hugs. Both of them seem like ladies I could hang out with as friends and they promised to come up with some reason to get to a conference in the Pittsburgh area so that they could see us.
Again, we ran into Suzanne leaving to get onto the tram. Her office is on the hill and she came to the waterfront just for little ol’ me. When we parted she suggested having lunch together the next time we come to Portland. I guess I wasn’t the only one feeling the friend vibe.
My next appointment had me meeting Meg O’Reilly for the first time. I was very impressed. She was extremely thorough and spent quite a bit of time with me. The student who was accompanying her, Ruth, will get very good experience at her side.
Alas even with all the good feeling floating around I had come there for a very “uncomfortable” reason. It’s a good thing that IUDs only have to be changed after years of use because I really don’t think my mind would allow me to do that even once a year. I won’t go into too much detail, well I might, but it was incredibly painful, incredibly. First of all there is a tool that puts a perforation into your cervix…. ?!?!?!?? She tried to use an alternative but my anatomy said no. Immediately after using said tool she had to cauterize the perforation to keep me from bleeding.
The extraction and insertion portion… well, how can I possibly describe it. If you’re a woman it’s likely you don’t have an IUD and don’t know how it feels, if you’re a man you really don’t know how it feels and even if there’s something comparable with your anatomy I wouldn’t know. The idea with extraction is to have you cough so that your internal muscles move in a way that will allow the IUD to come out. It’s quick and painful but after the fact so… not as bad? Sort of. The insertion is preceded by a measurement that is almost as bad as the insertion itself. “A little cramp” is what I was told during the process. Uh, no, not a little cramp. It felt as though my insides were being crumpled like a wad of paper and then clamped with something sharp, like a bear trap? Quick inhales couldn’t be helped and a creeping nauseousness began to make its presence known. And then another “cramp” with insertion brought back memories of the year before when my ruptured cyst sent me into waves of nausea or wanting to pass out – too much pain for my body to decide. (I believe I ended up choosing both.) It was a quick revisit to that memory thankfully but I was left with the impression that someone had tried to scoop out my insides with a grapefruit spoon followed by a swift kick.
Ian looked at me with sympathy – yes, that’s right fellas! he was IN THE ROOM with me! – and got up to hold my hand. Dr. O’Reilly mentioned that she had had hers replaced a couple of weeks prior and understood what I was going through.
Just to make sure everything was where it was supposed to be O’Reilly brought in an ultrasound machine. Using the wand she located the IUD and said that it was exactly where it needed to be (thank god!), but she also noted that there seemed to be a whole lot of fluid at the front of my pelvis, enough for her to be concerned with. She decided to have me go in for a more in-depth ultrasound before we left to go home. She included that there would be no need for it to include an internal ultrasound because the amount of fluid would make everything very easy to see. (Gosh, no internal ultrasound after all that IUD business? Darn!)
So, back down the tram for us where I had blood work done and the ultrasound. The ultrasound images looked like the bottom of the ocean, like this image on the right but with the water being black… kind of like this ultrasound image (the one on the far right). Now, these are just images I found online so if you’re a doctor please don’t write to me and say “Holy cow! Look at the horrible thing you’ve got going on there!” Like I said, these are not my insides.
When that test was all finished up I got word that Gelow wanted to get an echo done just to make sure. So, we went back to the cardio floor and I had an echo done. Usually echos are pretty swift but with artificial heart valves each one has to be looked at for an additional 15 minutes or so. With three of those the test gets a little lengthy and lying in the dark with someone pressing an instrument on all your scars and your arm falling asleep it’s a twisted game of pain vs. “take a nap”. Eventually we were free to leave the room but to wait until Gelow saw the echo.
After waiting a bit and playing phone tag with O’Reilly and Gelow and getting snipets of not so great news I got a joint call from them both. The echo and ultrasound look fine but my carcinoid specialist, Dr. Pommier, wanted still more testing and so did Gelow. Apparently the fluid could be some sort of shunting in a condition called chylous ascites and could lead to all sorts of complications. He wanted to perform a paracentesis, or removal of some of the fluid from the pelvic area for testing, but if my INR (blood thinness) was above 2.5 I would have to be hospitalized. Well, here’s the thing, my INR is supposed to live between 3 and 3.5 making it waaaay too thin to perform this test. Hospitalization would need to be done to have my system trade off coumadin (a long-acting pill blood thinner) for heparin (an IV blood thinner that can quickly leave the body). Paracentesis is done with a cartoon-sized syringe right above the pubic bone. Even though I was half in a coma the one and only time I’ve had it done before I still remember having it done very clearly.
On top of this great news Gelow wanted to get a very good look at my heart valves using a fluoroscopy. A fluoroscopy is like an X-ray movie. Metal things show up remarkably clear in this test. The image on the left is like what can be seen. Mine is incredibly more clear and interesting, if I do say so myself. You can easily see each mechanical valve doing it’s job as well as all of the wires and bits of metal that are still inside of me. It’s amazing and sometimes a little disturbing.
So, here it was, past 5pm and all I wanted to do was go home and recover. I mean, for crying out loud, we parked close to O’Reilly’s office so that I wouldn’t have to walk too far to get to the car! Pommier needed to do some checking with other doctors so the paracentesis would have to be on hold for a minute but I would need to go back up to the main campus for the fluoroscopy.
At this point Ian and I hadn’t had lunch and were running out of steam. I went to find the imaging lab and he went to grab some food. (I later found out that he ran into Suzanne yet again and chatted with her!)
I’ve been to this particular imaging lab more than once and have always been surprised by how cheerful and friendly everyone is. It seems incredibly out of character for a lab of any kind. A technician named Annie came and chatted with me and brought me a “bunny suit”, a gigantic, paper suit to go over my clothes as well as a paper shower cap type head covering. We walked into the lab and I laid down. Music was playing and I had been greeted like a new guest to the party. Soon I could see all my mechanics bobbing around on the screen, but it didn’t take long to notice one of the doctors in the room point out to a technician that a valve wasn’t opening regularly. “Which valve is that in the middle?” I asked. It was my tricuspid, the same valve that had almost completely seized shut in 2012 due to a blood clot, I had almost died. It was only opening about 75% of the time, the other beats were half-baked attempts if that. I began to panic a little.
Back in the waiting room Annie sat with me as we waited for Ian to arrive. She could see I was upset and tried to respect that as well as making attempts to assure me that I had some great doctors looking after me. She went back to the lab not long before Ian arrived with food. We were waiting for Gelow to come and talk about the test.
Apparently Gelow was in a meeting but we were joined by Dr. Mudd, another transplant doctor on the team who was very familiar with my case. He sat and chatted with us as equals knowing that after everything we’ve been through we are well-versed in the medical terminology that surrounds our lives. He wasn’t worried about the tricuspid valve because, as he put it, I was only there for an IUD placement. “You weren’t complaining of new and overwhelming symptoms and the valve does seem to open and stay somewhat closed due to your inspirations.” So, breathing was causing things to move as they did. We chatted more about various health things and the move to Pittsburgh. “You need to be at a university institution,” he said. Because of my complications and the way medicine can change in an instant it’s important for me to be where that information can work to my benefit. When he left we were finally allowed to go home.
Our long and frustrating day ended with burgers at 10pm that night back in Yakima. I was not feeling so great.
It wasn’t until yesterday that my bleeding from the IUD began to subside and Pommier got back to me about the plan. Two weeks seems like a long time for both. Pommier thinks one of two things may be happening and his first hypothesis of cylous ascites seems to be based on some misinformation. After setting things straight we’ll see where we are about my needing to be hospitalized in Portland or if it can wait until we get to Pittsburgh. Fingers crossed that it can wait as we have way too many things going on for me to hang out in a hospital for a week or more 200 miles from home.