My appologies to those relying on these updates, truly. I know that was a large gap. Two reasons. First, and ironically, my whole last post was about waiting on the cusp for great news… literally days after that post Alan ended up admitted at Cleveland Clinic again for the uncontrolled uric acid levels and an ankle frozen solid with gout. But, during that admission we learned that Alan’s new kidney is finally filtering perfection!! It was what we were watching for in those several fall months and the milestone we wanted to celebrate. However, it wasn’t time to celebrate. Even with the inpatient treatment, Alan’s gout attack recurred and between the rejection in September through the gout in November, Alan was on 3 back-to-back high dose prednisone boosts extending almost 10 straight weeks. This directly leads to reason two even though it will seem like a tangent. Second, Alan has been quite ill and we didn’t have answers, until now.

So, number 2. I advocate Alan’s story so loudly because, other than being beneficial to myself (even if no one was reading this), we have attempted to be a beacon of hope for others specifically diagnosed earlier in life. We want to be a reminder of all the possible life after diagnosis – adventures, laughter, love, marriage, children, future. Yet I also frequently have to talk about the fact that transplant medicine is a treatment and not a cure. That one, well, sucks. So many people have the notion that new organs can fix everything and it is a brutally harsh reminder that it is a step forward usually but not a winning solution like so many hope. That blind optimism includes Alan. He dreamt that with a functioning heart (and subsequent kidney) that maybe it would be easy to find some semblance of the mid-life version he saw for himself – the energy, motivation, capabilities, involvement, partnership, equality. Our story and our past six months are not the poster-child for transplant living. This has continued to be a fight, struggle, and conflict to be a part of each day. We seem to possibly be on the other side with answers so that’s why I am here. Once again, this is just a testament to how much one person, one family, one transplant journey can be forced to find the strength to push through, when there is no other viable choice. So again, I didn’t want to write this part because it may sound horrible (and Alan living it was honestly mostly horrible) but it is yet another thing survived proving transplant medicine can still grant a beautiful life, you just need the thick skin to get there.

Here is what has been happening and why I didn’t write while we were lacking answers. I can’t recall the exact start but I know that by Thanksgiving Alan was sick again. Sick as in, lasted 1 hour at his parent’s and couldn’t eat. He was having full days of numerous bouts of vomitting – this extended between mid november to mid february ranging from 1 to 5 days a week. Around Dec 1, Reese had a GI virus with 6 days of vomitting so Alan just rationalized that he had similar, with a low immune system, and couldn’t shake it. Then we had a sinus thing in the house and he rationalized the vomitting was related to drainage. Sometimes he would have eaten something that Reese and I hadn’t and he rationalized it was food poisoning or pills on an empty stomach. Being immunocomprimised in winter virus season, he didn’t question it, just was really getting burnt out on how often he felt horrendous. Separately, he had some immensely high blood sugars out of nowhere (500s) but a change in Drs and the inability to use oral diabetic meds still because of his new kidney, he just pushed more insulin and discredited it…   The vomitting episodes (and an ice storm) caused him to miss 3 scheduled heart biopsies and numerous blood draws. So finally, the bx from Dec 6th was finally meant to happen on Feb 9th, and he was still too sick to make it happen. He was admitted immediately with a wide range of tests and we would get answers none of us even had considered. 

The answer… Stupid Prednisone. Low dose, long term use for over 20 years had created steroid induced diabetes years ago. The short term, high dose bursts in the fall damaged his pancreas so severely that even insulin could barely help. Generally it is a wonder drug and a crucial necessity to transplant patients but also a trouble making double agent causing alan months of excruciating symptoms and internal damage. Prednisone significantly decreases inflamation and on top of the expected weight gain, mood swings, and bone-calcium loss, it is well known that it markedly spikes blood sugar…which we knew. Well, even if Alan could have made his routine blood draws, these lab markers are not in his usual panel. The prednisone had done such long term damage to his sugars that his triglycerides had jumped into the 700s and his lipase was quadruple a healthy value. His diagnosis: prednisone induced hypertriglyceridemia leading to severe pancreatitis!!! Part of the treatment for the pancreatitis set off another gout flare in this midfoot/ankle, which should require, you named it, more prednisone! It was a delicate balance over those two weeks to eliminate the gout crystals, decrease pancreatic irritation and inflamation, balance glucose levels, alter insulin levels, maintain hydration, decrease blood pressure, and overall decrease uric acid levels. Five med changes and the symptoms are much better. The lipase is resolved and daily blood sugars are much lower. Pressures are still quite high and most everything else will require a few weeks before rechecks. The amazing part though is that his heart function is still exceptional and his kidney blood flow and filtration rate is excellent. No signs of rejection at all!

So now at least you know what was going on, or the abridged version. Literally September through February have been riddled with complications and more days feeling sub-par than superb. It has been tough. As always, we make the most out of our good days. There is a lot more scattered in there. * After we learned his kidney was finally working, we sent our letter to the donor family. And we received a response letter immediately. Alan decided with all of his complications and the mental side effects of the complications, he was not ready to “meet his donor”. Instead he asked me to read the letter and help decide when he’ll be ready based on the content. The only part Alan knows so far is that his incredible donor was named Ben. Ben’s wife did an incredible job introducing him and I hope to forge an unbreakable friendship, when Alan is ready. I obviously want to share more because Ben deserves to be celebrated, but this is Alan’s truth to share when he finally is ready. *  I had a very severe medical complication in the middle of all of this. I have know about a dislodged vertebrae since I was a teenager but it was stable for over 20 years. Well, the physical toll of caregiving literally broke me. Between carrying Reese, household chores, and probablly forgetting to prioritize sleep or myself, that stability crash landed. The weekend after Thanksgiving, I woke up and had lost most feeling and mobility in my right leg. Turns out my L5 had slid over more than 50% of my S1 and that grade 1 spondylolithesis of my teenage years was now a grade 3 with inflamation and stenosis compressing several spinal nerves to my leg. With almost 3 months of physical therapy and chiropractics, I have all sensation and mobility back in my leg; my back pain is still daily and minimal to severe but the doctors have agreed that as long as my leg stays uninvolved, I can postpone a spinal fusion surgery, for now, but I still have limitations on my everyday capabilities. This was mentally debiltating for me in that, I need to be caring for my two humans, and fur babies, and running a house, and eventually an income, and I don’t have the time or ability for me to be the broken one. But I am doing everything I can possibly control to not have this diagnosis interfere with my life. * Reese started preschool!!! She generally loves it but man has this little girl handled some adult trauma this year and especially the past few weeks. Any disruption to her MWF school schedule and it is earth-shattering for her. Plus, she was at the hospital with us the first week of this admission; this was the first time she saw the pain and severe sickness and talks of death and first-hand darkness. Her other visits were always the tail end when healing was making progress. We didn’t intentially plan for her to be there but she lightened the load yet we knew she had to go home. She has big feelings just because of her age, but also she has big feelings being away from us, seeing Alan sick, going to school instead of spending time with us, nighttime panics if not sleeping near us, and terrified of me working ever again. Alan has spent almost 9 months in the hospital out of the past 21. We had time to make up for but now she is terrified to be away from us. We are using all our resources to help everyone in this house cope with the events of the past two years, Reese included. 

Does your head hurt? Maybe your heart a bit? It’s a lot. It has been two years of just a whole lot… but this is 10 months we weren’t sure if we were going to have. It’s been 10 months gifted to us by Ben. We certainly hope there are decades to come but each day of Alan and Reese making memories, each day I get to laugh with my husband, each day Alan faces some new complication and obstacle, it’s still one more day than we thought me might have. So we continue. Do I wish I was practicing medicine again, yes. Do I wish we had an income, of course. Do I wish it could get an ounce easier for Alan, desperately yes. Do I wish I could protect Reese from all of this trauma, painstakingly yes.  Am I exactly where I still need to be, easiest yes. But I truly think the rainbow is just around the corner. We didn’t come this far to give in now. These sacrifices, daily battles, and Ben’s ultimate gift are all to bring better days. The first year post-transplant is the toughest and we are down to under 8 weeks. Setting sights on smoother seas. Love you all. Thank you for reading this.