So, in my mind this was a short update as we are lacking many answers, but that’s not how I ever end up writing. We have spent the past two weeks back at our second home, Cleveland Clinic.This mess of symptoms is honestly the most helpless we’ve been in these entire past two years.  The suffering is unbearable to watch, and i’m not even the one with the physical manifestation. The end prize (going home with health) is still the same as this time last year, but the hope and optimism that comes from new functioning organs is missing this time; just a battered body of 22 years of detrimental meds, always waiting for a shoe to drop. The mental fortitude to keep going may wane in these times, but he never actually gives up. I still just wish I could grant him a break from this. This hospitalization has probably been the most reflective for me (sorry if I’ve said that before). I know Alan has high expectations of those he lets into his world, because let’s face it, he knows the value of the good days/minutes and he refuses to wast his energy on things he doesn’t want to have priority. He may not always communicate his expectations but he knows what fulfills him and what drains him; so regardless of how exhausted and crabby he may get, I still don’t fault him for it. We have spent over 450 straight days together, minus 3 columbus girls getaways. Like, full days, or at least visiting hours, or as many minutes as can muster energy for in his wild household (talkative wife, energetic Reese, needy pups, and a cat who always comes around just when we are ready to nod off) AND I still am not sick of him. I mean, there are moments because this has been Hard! but I understand him more every day and I cannot imagine doing life without him. Ben, our donor, lets us try to find the happy in each day, even if it’s harder for Alan to do than me. These past few complications may not overtly be life or death, but they sure have proved to be quality of life vs death. 

Thursday (march 16th) Alan woke up gasping and stiffling from stabbing pains in his left side,both along the lower ribs and referred pain in his shoulder, from anything more than light shallow breaths. After battling the hyperventilation and severe pain for 3 hours we decided it was ER time but he wasn’t even capable of getting dressed and to the car so we had to call 911. The last time this happened was the beginning of Alan’s 6 month hospitalization for his new organs, but the pleuritic breathing pain was immediately identified due to the 50 pounds of water retention in his heart failure. We have not have any pleuritic episodes since receiving his new beautifully functioning heart, so it was both triggering and foreign all in one. Regardless of being baffled, the pain was excruciating and unbearable, plus these symptoms are the exact same signs as blood clots, so obviously it can’t be taken lightly. 

Now filling in the preceding weeks. After getting home from the hospital in february, we had at least one great week. Then we started getting vomitting episodes back. Panicked it was pancreatitis we were trying low sugar (for the triglycerides) plus low fat (for pancreatic digestion) diets but really alan just lost his appetite and thrived on jello and soup again for a two weeks. During that, he had a weird set of bloodwork results but they weren’t sure on the time-sensitive accuracy so they told us to repeat them after the weekend. When we finally got the results, Cleveland called and made us go directly to Toledo Hospital ER. His Tacrolimus level was 40!! That is very toxic!! Although he needs to be under 20, his team wants him staying in the 7-8 range. So, with toxic tacro at 40 this means Alan has absolutely no immune system to fight anything off; the higher the dose the less likely for organ rejection, but also tacro damages kidneys which is largely responsible for Alan needing the dual transplant since 20 years of tacro had already ravaged his native kidneys. His kidney did actually show an acute kidney injury but it was moreso caused from dehydration from the GI symptoms. We have no idea how or why his tacro spiked. The dose had been stable but we can only hypothesize that after resetting his pancreas and resuming normal life, maybe his metabolism reset also. For whatever the reason, Alan was incredibly susceptible to any microbial attacks. Plus this AKI made his cardiac team very conservative of his diuretics and we all have learned that by the time Alan overtly shows symptoms of fluid overload, we’re far past a problem.

Enter stage left: Parainfluenza 3 and BK virus…    The same week that Alan had the toxic tacro ER trip on Friday, Reese had had a fever and barky cough Sun-Tues that I affectionately had already mom-diagnosed as Croup. Subsequently Reese spiked a fever again Thursday-Saturday only to find by then she had a double ear infection. So, Friday Alan ER and then Saturday Reese urgent care, but antibiotics fixed her right up and she loved the week of down time with us and extra snuggles. Usually when kids get croup it truly is parainfluenza 1 or 2 but 10 days after Reese’s fever, Alan gets his attack and within hours at the CCF, they diagnosed him via a respiratory viral panel as PI3 positive. Preschool finally took Alan out. Great so now we have a diagnosis, we have severe symptoms, and we can’t take NSAIDS (normal pleurisy med) as a transplant patient, so we have absolutely no tangible management or treatment plan. We had to wait from 9am thursday until 3pm saturday for cleveland to finally have a bed for him. The ambulance had taken him to Flower hospital and other than copious amounts of IV pain meds, everyone there was transparent but terrified to touch Alan and said his medical complications/transplant medicine was far above their scope of practice. So an ambulance ride later, lots of scans and tubes of blood, heart looks good, pericardium may be thickened, kidney looks fine, left diaphragm is raised and lung bases are thickened, low probability of blood clots on VQ scan, pleural effusion is indeterminate (possibly linked to his decreased diuretics), and still episodes of stabbing pain for hours with mid to deep breaths.              Now to complicate with BK virus. To our best understanding, we all probablly met BK when we were kids, it caused a cold no different than an ordinary rhinovirus and then it sits dormant in everyone’s system (the whole chicken pox to shingles concept) so when you are severly stressed or compromised later in life it can decide to reactivate, but it shouldn’t have any real symptoms as an adult… unless you have a transplanted kidney in which BK can magically destroy that kidney and render it useless. Well, apparently during our autumn of prednisone, Alan’s BK reactivated. But our hospital system doesn’t flag it as an abnormal result because in a non-transplant hospital it doesn’t mean much for an adult. So we had very low numbers in november, only a few hundred copies of the virus circulating. Fast forward to Tacro toxic march and we rocketed to 100,000 copies. The answer to clearing BK virus is to pause/limit the antirejection meds in hopes of clearing the virus and putting BK back to sleep. Sounds simple. Balance rejection meds so we can clear 2 viruses each with fairly impactful consequences and just make sure we dont start rejecting 2 organs while we do that. 

Well, again I say, here we are two weeks later. Really the only thing we’ve done is stabilize the tacro finally around 7. That’s it. Alan is still having the pleuritic attacks daily, infact he had two today each lasting about 3 hours before dosing him with enough meds to either numb it out for him or simply put him to sleep. They are trying different med combos each day trying to alter nerve sensations but there still hasn’t even been a definitive cause other than the theory of parainfluenza. They completely stopped his other AR med, Cellcept, in hopes of fighting the viruses. At first BK dropped to 80,000 but then exploded again and is more like 300,000. Also CBC has been all over the board and honestly this might be the first time in his journey that my scope of medical understanding is purely confounded. He is bruising and bleeding far more than normal (even before the daily heparin started). He has a 9 inch hematoma from an ultrasound that barely gave any pressure. His body is in a tailspin and somehow he still hasn’t crash landed. We can’t go home until this pain is tolerable, a new pair of antirejection meds are picked/tested, and hopefully we see some movement in BK regression. Alan’s next rejection biopsy is next tuesday so they also may wait to ensure no markedly adverse affects from the med changes. We have an MRI on thursday to evaluate something on a native kidney plus moniter the other organs since his other scans are performed without contrast dye to preserve his kidney.

Alas, the world does keep turning. We try to keep up inspite of the complications. Honestly, we try to keep Reese’s life completely stabilized including upholding routines with school, sports, play dates, and birthday parties. We left Reese with the Grandmas the first week and a half to finish school but as soon as Spring Break was official, I ran home to grab her (including her friend’s birthday brunch) and brought her back to CCF. Also, last week, I had boards scheduled and even with losing a week of study time, I was going to have to pay to push it back or take again if I failed so I crossed my fingers and sure enough, I passed!!! When the answer flashed on my computer screen, the emotions of a three year hell all came flooding in. I barely felt anything for graduating with my Master’s last summer but acknowledging that all the effort and sleeplessness I devoted to this throughout our terrifying other challenges, it was a surge of pride, relief, and sadness. This complication/admission is another reminder that I couldn’t be accountable at a job yet, but at least now I have the credentials to rejoin any branch of the pathology world (return to surgical, swith to forensics, or commit entirely to teaching) when our journey allows for it. Providing fiscally for my family is a weight I never like to burden Alan with, plus all of you are directly responsible for assisting us through this past year and helping to advocate funding so we could focus on healing, not bills, but we have exhausted our short-term plan and now I will be readily able when things calm down. Also, with boards behind me, and the three of us here together, other than the physical pain, the very confusing ambiguous game plan for Alan feels much more tolerable. As always, we just want our guy home, with more good days than bad, but in the meantime, we’re happy navigating this since we are whole and together. Lack of answers is still disappointing but these past few days,this is the most relaxed I have been able to be while in a hospital probably ever. With our one year transplantiversary fast approaching, I hope to get on with good news soon and also to be able to share a bit about Ben, as his sweet family will be having quite a different anniversary for April 17th. Sending love to the moon each night to watchover them and trying to get Alan’s story back on the incline to share, honor, and celebrate the good and longevity from Ben’s tragedy.