I regret not posting an update a couple of weeks ago when I was feeling very much like a rockstar. I was moving around without any problems, taking SalTak on hour-long walks, preparing meals and enjoying perfect digestion.
Keep that in mind as I now tell you that I’ve been in the hospital at UPMC for a few days and expect to be here a few more. We don’t know if I caught a virus or picked up some bacteria from the gruyere grilled cheese I ate for lunch Saturday before last, but something took a hold of my body that evening and has been relentless ever since. The perfect digestion I bragged about (TMI goes out the window after a liver transplant so my sincere apologies to all family, friends and random strangers I meet on walks) took a sharp turn for the worst. Fortunately, I did not throw up or have a fever, but I did practically live on the bathroom floor for a solid 9 days. We’d been warned of a weakened immune system and I was trying desperately to remind myself of that in between bouts of misery but I will fully admit that attempting to be prepared mentally for setbacks didn’t help very much.
After the 9th day, my doctor in Pittsburgh told us we needed to come up and get checked into the hospital. I’ll spare you the bulk of the details but I’ve been back on the transplant ward (in the same room I was in before!) since Monday. I’ve currently got IVs in both arms, had a CT scan with both oral and IV contrast yesterday and will have a dreaded colonoscopy tomorrow.
It has been awful but in constantly searching for reasons why it has also been good, I have found several. The last time I was here I still had all my incision staples, I couldn’t do anything for myself- including washing my body or standing up straight. I had multiple neck IVs and couldn’t turn my head at all or sleep on my side. I was in so much pain. Fortunately, I was so blissed out by simply having survived the surgery that much of the pain was trumped by excitement. Being here now, while super discouraging, is at least reminding me how far I’ve come. My scar is now totally healed and my hair is actually washed. I can sit up on my own, sleep on my side, bend over to grab my slippers, walk to the bathroom alone(!). When I first arrived this go-round I refused to put on a hospital gown. I felt like it was going to make me look and feel sick again. That lasted several hours but as anyone who has ever had an IV for longer than a day can tell you- the gown is key. Arm holes that unsnap make life so much easier. Alas, I am now all gowned up, perched on this awful bed and consistently have a giant cup of crushed ice and a plastic spoon in hand. I’m tired and over this but I’ve never been more thankful for the people in our lives who have made this possible. The GoFundMe money has taken such a huge portion of stress out the equation. Last minute flights, a week’s worth of hotel rooms for Jordy and a week of staying in a hospital where thousands of tests a day are run certainly does not run cheap. I cannot imagine going through this knowing the entire financial burden would weigh on us and our families.
Jordan is by my side, of course, and somehow always has the ability to make horrible situations bearable. I can tell the nurses think we’re so strange because I insist on bringing in my own Evian water and every morning Jordan meticulously prepares for me two pieces of sourdough toast (brought in from the outside, obviously) with good butter and the expensive strawberry preserves. I send him out on errands and get full reports upon his return: “did you find anything at the thrift store?” “How was the bartender at DiAnoia’s this time? And the pasta special?” “Did you see any cute dogs at Frick park?” Just a minute ago, he returned from lunch with a bag full of art supplies as a surprise. I’ve been complaining of being bored so now I have paints, paint brushes, canvases and notebooks to pass the time. I often get called out for portraying Jordan in a perfect light but that’s because I actually think he’s really close to perfect. With that said, he’s practically evil if he’s woken up in the middle of the night. So, in order to keep our marriage as beautiful as we think it is, he goes to sleep at the hotel every night. I’m perfectly happy with this arrangement as he is very much LESS than perfect when he hasn’t had sleep. It’s the best thing ever to wake up knowing my rested husband is bringing me coffee and looking forward to bringing me toast in bed.
Yesterday, as they were wheeling me down the hall on a stretcher to go have my CT scan, I saw the sweetest looking elderly man taking what I assumed was his first post-transplant walk. His arm was around his nurse, his IV pole was wheeling along beside them and his wife was trailing closely behind. He actually stopped the nurse who was pushing my stretcher and asked her to take a picture of this monumental occasion. Unfortunately, not a one of us had a phone or camera! He was so proud of himself for taking those steps and, for crying out loud, he wanted it documented! Oh my gosh, I understood completely. I wanted to capture this moment for him so badly. Instead, I applauded him – literally clapped and cheered- and doted on him for being so strong. He seemed to be satisfied enough with that and kept moving along at the speed of a snail.
Earlier today during one of my walks around the transplant ward, I decided to go up and down three flights of stairs several times just to move my body and keep the boredom at bay. I immediately recalled the time during my last visit when my physical therapist asked me to go up one flight of stairs at the end of the hall. I made it about three steps up and almost fainted. They actually had to use a recliner from one of the rooms to wheel me back to my room because I couldn’t walk. That was the afternoon my hemoglobin had dropped to a scary level. It felt like chaos ensued shortly after. As far as I was concerned, the world was coming to an end that day and I would never climb a flight of stairs again.
I’m rehashing some of these old events to build myself up because I’m proud to report that today I scaled those steps like an Olympic athlete. I could have climbed a hundred of them. It has only been 9 weeks since that dreadful hemoglobin day and while I am back in the hospital, I have to remember and believe that I have come so far.
It’s been wonderful to see some of my favorite nurses. One of my transplant coordinators with whom I speak on the phone almost daily has now become like a family member. She will not stop hugging me. Jordan counted 7 hugs the last time she came in for a visit. She is so sweet and doesn’t like seeing me in pain. Her name is Jean, just like my grandmother’s.
So now we wait for answers. We beg for your prayers. I didn’t feel like posting at all but selfishly wanted to only because I wanted to ask everyone to be praying for us. May I selfishly list our specific requests? 1. we need to figure out why my body is retaliating. Answers from the colonoscopy would be helpful. 2. we need my bile tube’s suture to loosen up so the tube will come out (it’s being finicky and won’t release) 3. We need to get out of here as soon as possible so we can be home and begin recovering …again. 4. we need to feel encouraged because as much as I can write about the nice parts of this whole thing, the reality is that it’s still hard and we’re down and discouraged a lot. 5. we need my body to rally. My white blood cell count is dangerously low so I’m even more susceptible to bacteria than ever before.
I’ll stop there and let you all get back to enjoying these precious last days of summer break. Thank you for loving and supporting us. We sure love all of you.
Updates from Sally and Jordan 