Dear family and friends,
Earlier this week I returned from spending seven days perched 14 floors above Fenway. In case you’ve forgotten, here is a picture from casa-Benjamin-East:
That’s right—this update comes to you (mostly) from gate A19 in the Boston airport (and then supplemented in Denver).
The last couple of weeks have been very eventful, both positively and less so. For those playing along at home, February 9th, three months since transplant, was a milestone date. It was, after all, those first three months during which Abba was likely to be most fragile. Assuming Abba made it through the first three months without signs of rejection, his restrictions would begin to soften. He would be permitted to start eating more diverse foods and foods not prepared exclusively in the apartment (tough living right down the street from one of Boston’s favorite doughnut shops and be unable to partake) and he would be able to have a few more visitors (more on that below).
As the three-month appointment approached excitement built. Abba even fantasized about the docs spontaneously saying he could return to Milwaukee early. Eama, on the other hand, was concerned. Abba was having some balance issues and was getting kind of fuzzy. He even took a small tumble one day getting out of bed. At first it seemed like something that could be explained away by lack of sleep and not eating well (or enough).
Eama asked the doctors to figure this out, and it’s a good thing she did. As you may recall, this is not Abba’s first major medical rodeo. Over the years he has had several big medical events in his life. Arguably the top three were his aneurysm in November of 2002 for which he received an artificial heart valve and a lifetime of taking blood thinners, his lymphoma for which he received R-CHOP chemotherapy which came with a chance he would need a bone marrow transplant a decade later, and now, a decade post-lymphoma, his transplant. The lymphoma seems to have led to the transplant, but it was the aneurysm that gives everyone the most pause.
From the beginning of the current medical adventure, we all knew Abba would be more fragile than other transplant patients going through this (who are very fragile to begin with) because of the titanium valve attached to his ticker and the blood thinners he takes to keep his good stuff flowing through it freely. It may be obvious why, but in case it isn’t here’s a quick and dirty lesson on the lovely world of thinning blood following heart valve replacement.
The amazing machine that is the heart pumps blood in and out of chambers and through valves with extraordinarily precise coordination. Imagine the most impressive Swiss clock, only even more impressive. When we introduce an artificial valve we risk messing with that well designed machine. First, blood may “stick” to the valve and clot. Second blood may not flow through the valve as smoothly as it does through the original (sometimes called turbulence) and that also can cause clotting.
Clotting can be good; we clot so we don’t bleed to death with every cut. Too much clotting, however, is bad because clots can interfere with blood getting to the brain which can cause a stroke (also something you generally want to avoid if you can).
Blood thinners make it so the blood is less likely to stick to the valve and clot up and less likely to have that turbulence cause clotting. It’s no fun being on thinners because you bruise easier and the bruises last longer, you have to be even more careful around medical and dental procedures because of how your body heals afterward, and the thinners change how your body responds to other medication. As a result of all of this, it is important to get the least amount of blood thinner in your system. Under normal circumstances, you work with your doctors and nurses to find that perfect dose given your height, weight, activity level, and diet.
All told, Abba did pretty well getting to that magic blood thinner level over the last 16+ years. The trouble now, however, is he has so many new drugs associated with the transplant recovery that things are much more complicated to get them perfectly aligned. This is the sound of one heart valve clapping. His difficulties with appetite, strength, and energy levels meant there was also weight loss (almost entirely muscle mass) and that made it even more difficult to keep the thinners at the right levels.
Eama’s alarm lead the docs to do extra blood tests to look for something out of the ordinary, to do a CT to confirm no brain hemorrhage or tumor, and then an MRI to look at the brain in greater detail for any signs of damage. They also were concerned that the sleeping meds they had Abba on might be causing the symptoms, so they took that out of the mix.
The CT was clear, the labs were clear, but the MRI showed some spots that could be of concern which lead the docs to want an echo cardiogram and even closer observation. As a result, just a day before his three-month anniversary, Abba was admitted to the hospital. Uncle Sheldon (his brother the neurologist and psychiatrist who conveniently lives just across town from him—if you can’t avoid a stroke, I highly recommend having such a brother just across town) quickly assisted with additional reads of the scans and with performing in-depth, in-person assessment of possible cognitive changes. It pays to know the right people.
On Tuesday, February 12th, the same day I arrived in Boston, Abba was released from the hospital after a clear echo and days of monitoring. Though it may never be possible to know with 100% certainty, the current theory is he had an acute stroke due to an imbalance of the thinners. Early examination suggests reason to be highly optimistic for recovery from it, but only time will truly tell. The main symptoms seem to be some intermittent short-term memory challenges and some appetite issues. He has also had some stiffness in his neck and shoulders, but we believe that is related to days in bed rather than the stroke itself. All in all, the prognosis is good. Scary, of course, but could have been much, much worse.
Uncle Sheldon was able to bring the MRI scans to one of his colleagues who is an expert in this particular presentation. The colleague not only agreed with the earlier assessment, but went a step further. First, Uncle Sheldon and his colleague were able to rule out the small tumble as the cause. Second, Uncle Sheldon and his colleague have expressed reasons to believe the memory issues he is having now may actually be related to similar issues he had following the valve replacement surgery all those years ago. In other words, the damage now isn’t that bad but instead just stirred up remnants of the old wound. It is not to say this new event isn’t tough—just to say that it isn’t as bad because it may not be all new damage. Finally, given everything, there is really good reason to believe he will recover from this though it may take months (three was the estimated number tossed around).
It is scary that there is no guarantee we’ve seen the end of this issue, however everyone, Uncle Sheldon and his colleague included, are confident that the thinners are now in better alignment and so this shouldn’t happen again. They continue to monitor Abba very closely, but getting the blood where the docs want it is some mix of art, science, and luck. It is also challenging because there are competing interests: increasing his weight and activity level will aid in his continuing recovery from the transplant, but those variables mean thinning meds need repeated adjustment. We’re cautiously optimistic, but remaining vigilant in monitoring.
Part of the new vigilance is even more active in-home monitoring. He still goes to the clinic for labs (which continue to show he is otherwise doing absolutely great—the docs are really happy about that) and doctor visits, but he now has in-home physical therapy which comes with pulse-oxygen monitoring, heart monitoring, repeated (and sometimes annoying, but useful and tolerable) questioning, and monitored stretching and exercise. There was a brief period when Abba had started working with a personal trainer before this latest chapter began; now he gets a sort-of-trainer and insurance foots the bill.
There is a bit of coaching Eama has had to do to convince Abba to overcome the lack of appetite but as of the day before I left Boston, Abba was officially keeping up with a new schedule of eating every two hours during the day.
There have also been funny moments. Like Pavlov’s pooch, every time Eama comes in the room, Abba suddenly has particular shoulder and neck stiffness which can only be eased by Eama’s neck and shoulder rubs. Sometimes this occurs within minutes of the last rub. That may be related to the short-term memory-issue—that he forgot she just rubbed—but it is also possible that Abba has found a new way to get extra affection. I did overhear the following exchange the morning I left Boston,
Abba (from the bedroom): Cin?
Eama (who was in the computer room, but came running when she heard her name): Yeah Jer.
Abba: Would you give my shoulder a little attention?
Eama: Not right now.
Abba: Then you shouldn’t come in here. (Followed by self-amused chuckling.)
As a result of this little detour into the land of ischemia, the three-month marrow aspiration was postponed, but otherwise things in transplantville continue in the right direction. We will soon get results of a post-transplant aspiration and that will let us know with better accuracy just how well Abba is doing. Assuming things continue to improve on the cognitive front and continue to remain great on the transplant front, he may soon be able to have more visitors. For the most part he’s not yet ready for friends to swing by, but he has started receiving a very small number of family and an even smaller number of non-blood-family visitors. I’ll let you know when that restriction is loosened.
Also, because he is able to now eat foods from the outside you may be tempted to send him something. Please don’t without explicit approval from Eama or from me. While he may be permitted, tight control over food for caloric and nutritious reasons is still necessary. That too will hopefully soon change, but we’re not there yet.
Finally, regarding communications—the memory issues are interfering a little bit there. What that means is you should continue to email him directly if you so choose, but also continue to not take it personally if he doesn’t respond quickly or at all. Please do not call him without pre-clearing a time and date with Eama. Some days he is booked up with doctors, labs, and other commitments and other days he has more flexibility, but either way, she remains the gatekeeper there.
While things may seem like they happened quickly at times over the last weeks, the narrative was fluid and so I waited until things took a more solid form before sharing. I will continue with that method going forward; you will get the news, but, to avoid 45th-presidential-like dissemination of misinformation and to avoid stirring up unnecessary anxiety, only the news fit to be printed.
Rest assured Abba is in good hands, high spirits, and is doing well, all things considered. This is a setback, certainly, but he is determined to overcome it. The doctors (Uncle Sheldon included) are hopeful that the damage isn’t insurmountable, and that Abba has a really good chance of recovery. Only time will tell us for sure, but as you all know this sort of determination is deep in his soul. One might even say that it runs in the family.
In fact, if after hearing this updated tale, despite my continued reassurances that we are hopeful and we are optimistic and therefore you should be too, you are still hanging onto a feeling of fright, consider this: At 92 Savta (his mother Edie) was hospitalized for a sort of stroke in her esophagus. I was in visiting when it happened—when she decided it was time to call an ambulance—and I accompanied her to the hospital and sat with her for the days following. On the third day, after running a number of tests and confirming their grim suspicions, her doctors came in and told us that there is nothing more they can do for her; they would try to make her comfortable, but she should prepare for the end which would come in a couple of weeks.
She told them that she didn’t like that option and wanted to hear alternatives. The doctors repeated that when this happens to the esophagus, which is needed for eating and drinking, the esophagus doesn’t heal—it’s essentially dead. Since a person can’t survive without food and drink, there was nothing they could do and so there was no alternative. She again pushed back and explained that she would get better and wasn’t nearly ready to give up and so she needed to hear a roadmap to accomplish recovery. Her doctors reluctantly agreed they would allow her to try to recover, but they didn’t want to foster false hope, and laid out what they honestly believed was an unachievable set of milestones—something of which they repeatedly reminded her.
Savta began with clear liquids. She beat the odds and was upgraded to all liquids. She again beat the odds and was upgraded to soft foods. When she finally beat all odds and was upgraded to a completely unrestricted diet, her doctors were so shocked and amazed it led to published papers and conference presentations. My cousin Malka and I will be in Ohio next month for Savta’s 94th birthday and (as she did in advance of our trip in for her 93rd) she is already starting to plan the flavors of cake she wants and the trip to her favorite restaurant for a celebratory birthday dinner. Savta’s condition was dire and she clawed her way back. Abba’s condition is nowhere near that and he has just as much determination (not to mention fewer years of ware and tear).
The moral of this story is, don’t count a Benjamin out prematurely. Be as confident in recovery as Abba and Savta. There is very good reason to be.
That’s all for now. Thanks everyone for your continued support and well-wishes. They are always appreciated!
Love,
Ariel