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.
Amaya (aka Miss Kitten)
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!
Blood culture bottles about 4-5″ high – adults only use two, the third is just for children
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
An example of 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!
- “Man Up” – Lake Bell, Simon Pegg: There’s a blind date mix-up that heads into hilarity!
- “Slow Learners” – Adam Pally, Sarah Burns: Two socially challenged friends decide to live it up and become slightly horrible people. They redeem themselves, don’t worry…
- “Crimson Peak” – Mia Wasikowska, Jessica Chastain, Tom Hiddleston: Whoa. A groom brings his new bride home to “Sister” and the creepiest house EVER!!!
- “John Wick” – Keanu Reeves, Michael Nyqvist: Uh, whatever you do, don’t piss off the retired assassin. Especially if it’s by stealing his kick-ass car and killing the dog his dead wife left him. Oh, you did what now?!? Gooooood luck!
- “CBGB” – Alan Rickman (RIP) and a bunch of lookalikes: The story of how failed bar owner, Hilly Kristal, changed the world of music forever.
- “Ex Machina” – Alicia Vikander, Domhnall Gleeson, Oscar Isaac: Middle of nowhere Norway + geeks + A.I. = HOLYCRAPIDIDNOTSEETHATCOMING!!!
- “The Legend of Barney Thompson” – Robert Carlyle, Emma Thompson, Ray Winstone: Barney’s got it rough and he figures out just how rough when his mum goes on holiday.
- “Heavy Metal” – Richard Romanus, John Candy: This 1981 animated “film” takes the best parts of the comic books of the era – bad rock n’ roll, old school animation, topless ladies – and connects it with a plot-line that could have only come from 1981 sci-fi. Oy. (A comedy without trying to be.)
- “7 Days in Hell” – Andy Samberg, Kit Harington: This mockumentary follows two tennis-playing numbskulls and their match in 2001 that took 7 days to complete.
- “Becoming Jane” – Anne Hathaway, James McAvoy: The based-on-truth story of Jane Austin and the love of her life. (Tissues were needed…)
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.
Yep, good ol’, 13-year old, non-power port. It has saved me many a headache.
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.