Random annoyances

It’s been quite a while since I posted a health update! That doesn’t mean that nothing has happened, it just means nothing MAJOR has happened. Instead I’ve had a series of random annoyances, and honestly, I just didn’t feel like writing about them. I actually didn’t even post about most of my summer outings and adventures on Facebook either. For the last several months I’ve been feeling very tired and heavy, and a lot of that has to do with Cam’s death. Losing Cam really hit me hard, and even though you wouldn’t necessarily know just by looking at or talking to me, I’ve been carrying that grief around like a heavy burden. It’s only been recently that I have occasional days when I don’t think about him and haven’t been randomly bursting into tears at least once a week. Throwing various random medical nonsense on top of that grief just felt like too much, and posting about it REALLY felt like too much. But I’m slowly adjusting, and finally feeling ready to delve into the last few months.
 
Also, I get a little anxious when I go too long between health updates, because I’m always waiting for the other shoe to drop. I’d rather catch up now before something major actually DOES happen, because it’s pretty much 100% guaranteed that something WILL happen eventually.
 
So let’s go back to June. The theme for June was: infusions! As has happened a few times since transplant, my iron levels got a bit low, so my transplant team prescribed a round of iron infusions. Unfortunately, due to bureaucratic idiocy, I couldn’t use the infusion suite at the Penn location in Cherry Hill. Apparently my doctors in Philly don’t have privileges there, and I needed a hematologist at that facility to place the order. It happened to be I DID need to see a hematologist anyway about getting off blood thinners, but they couldn’t get me in for a month, and I didn’t want to wait. So for 3 weeks in a row Katherine and I got to shlep into Philly once a week for an iron infusion. And then a couple weeks later we got to shlep back again for an infusion of IVIG. My monthly bloodwork had shown that once again my anti-rejection meds were being a little TOO effective and my antibodies were low. Since I’m not great at producing my own antibodies, I occasionally have to get them from someone else in the form of IVIG. Between the iron and the IVIG it felt like the HUP infusion suite was becoming my new home!
 
In June I also had a regularly scheduled appointment at transplant clinic, and my lung function was an amazing 101%!!! Despite this incredible number, I was having some unexplained shortness of breath, so I had a bronchoscopy to open up my airways again. I didn’t end up feeling better right away, but thankfully over the next several weeks the shortness of breath did ease off. I’m still not as strong as I could be, and I definitely need to get back on track with exercising and improving my endurance, but thankfully I’m breathing better now than I was a few months ago.
 
The annoyance for July and August was something that I actually had been dealing with for almost a year but suddenly got worse over the summer. Last October I suddenly started having random, brief dizzy spells. I couldn’t identify any triggers, and never knew when it would happen. I was already seeing an ENT for ear problems, and actually had a tube placed in one ear last summer to drain fluid which ended up being a pseudomonas infection, but dealing with my ears and dizziness got put on the backburner when the abscess drama erupted in December. My ENT did suggest an MRI in January, but I was VERY resistant to that, as I kinda panicked when I had an MRI in December. So we agreed to keep monitoring the situation and reassess in a few months… which takes us to July. In July, out of nowhere the dizzy spells became WAY more frequent and intense. Thankfully after a few bad weeks things eased off, but that was enough to convince me to take some anxiety meds and get an MRI. Unfortunately, I couldn’t get an MRI appointment for 2 months. But then! I had an ENT appointment at the end of August, during which she saw that the tube in my ear had not fallen out as expected. She tried to pull it out, but that REALLY hurt, so we decided to wait a few more months to see if it comes out on its own. And since then I haven’t had a single dizzy spell! When I finally got the MRI it didn’t show any issues with my ears, so the current theory is that maybe the ear tube was somehow causing the problem. So hopefully that’s one unexpected problem that was just as unexpectedly solved!
 
Also now I have some very cool pictures of my brain, which are prominently displayed on my fridge. Bonus!
 
And that brings us to August’s annoyance, which is actually still ongoing. One day in August I randomly woke up with significant neck and shoulder pain. I figured I must have slept funny and it would just go away… but it didn’t. Instead, the pain spread down my left arm, and I started having tingling off and on. After a couple weeks passed without improvement I scheduled an appointment with a specialist, but unfortunately nothing was available for 2 months. At my transplant clinic’s recommendation I went to Rothman Orthopaedic Urgent Care, who gave me prescriptions for muscle relaxers, physical therapy, and an MRI. Insurance denied the MRI, so we still don’t actually know what’s wrong, but based on my symptoms the assumption is something is wonky in my neck and triggering a nerve. Thankfully the pain has improved, but I still have tingling in my left arm, some of my fingertips are numb, and recently that arm has started getting weak. So now I’m just continuing PT until my doctor’s appointment at the end of the month, and hoping he has some solutions for me.
 
Getting old is great and all, but I could REALLY do without injuring myself in my freaking sleep. Who would’ve ever thought I’d survive long enough to start having Old People Problems??
 
On the plus side, I had another transplant appointment a few weeks ago, and once again my lung function was 100%! At least something is working right!!
 
So that’s my last 5 months of medical shenanigans. A bunch of uncomfortable annoyances – and I will freely admit that I’m REALLY unhappy about the ongoing pinched nerve issue – but thankfully nothing majorly dramatic. Hopefully I can continue the trend of avoiding major drama AND ALSO get rid of the random annoyances SOON!

It's been a long month

What a month!
 
It took a couple weeks, but thankfully Katherine and I have recovered from Covid. The Remdesivir infusions went well, and thanks to my friends I had plenty of food for Pesach (Passover). Unfortunately I kept struggling with nausea, and was wiped out from off and on low grade fevers, so my seders weren’t terribly festive. But I made it through Pesach, and my symptoms didn’t turn into anything serious, so I didn’t have to go to the hospital. Yay!
 
Getting through immediate illness without major complications is only the first hurdle though. Now I need to wait and see how my lungs do afterwards. Every infection has the potential to trigger rejection, which is part of the reason why infections are so dangerous for me. So far my lungs seem to be doing ok, but I need to keep an eye on them for the next few weeks and make sure nothing starts to deteriorate. I’m not sure exactly how long it will be until I’m in the clear, but my next transplant appointment is towards the end of May, so if my lung function looks good then I’ll assume everything is fine. Thank G-d, so far I’ve managed almost 6 years post-transplant without a single episode of rejection, which is remarkable! Hopefully I can continue that streak!!
 
Even though I was pretty much done with symptoms after 2 weeks, my transplant team said I was still presumed contagious for a full 21 days. Aside from making it difficult to fight infections, being immunosuppressed also makes it difficult to fully clear infections, so we tend to shed viruses for longer than most people. Which means I’ve been mostly quarantined for the last 3 weeks. The first 2 weeks didn’t really matter because I was too wiped out anyway, but I’ve really felt mostly fine for the last week. I was able to mask up and leave the house once for lab work and a vascular ultrasound (which thankfully showed that the blood clot in my arm has fully resolved! Woohoo!), but aside from that I’ve been stuck at home.
 
But today I was finally set free! I celebrated by… going to physical therapy. Ha. I’ve been dealing with off and on hip pain since transplant, but never quite got around to dealing with it. It’s typically only an issue if I walk for more than 15 minutes or so, and I have a pathetically sedentary lifestyle, so it doesn’t come up much. But a couple months ago I finally got a primary care doctor for the first time in years to look into some random shoulder pain, and I figured I may as well mention all my random aches and pains while I was at it. So she referred me to an orthopedist, who referred me for physical therapy, where I’m now working to strengthen my hips. I only went for 2 weeks though before catching Covid and being out of commission for the next 3 weeks. Hopefully now I can get back on track and get stronger, and maybe start doing something about making a change to that sedentary lifestyle!
 
And just to be extra celebratory, tomorrow I’m getting a tooth extracted! We found the first cavity of my entire life back in September, but it’s close to the nerve so they couldn’t drill it. It’s also in a wisdom tooth, so instead of going to the trouble of a root canal we’re just going to extract it. It took some time to get things squared away with my transplant team, and then to get an appointment with an oral surgeon, but eventually we scheduled an extraction appointment for December. Aaaand then Lump exploded, and the subsequent hospitalization, surgery, and other medical shenanigans promptly pushed all dental issues to the wayside. So now it’s finally time to address my tooth. After 46 years without a single significant dental issue, I am NOT excited for this. There’s also the fact that immunosuppression and steroids impede healing, so I have no clue how the recovery is going to go. Here’s hoping everything ends up going smoothly!
 
April has pretty much sucked, and the last few months in general have been A LOT. Hopefully this will be my last painful procedure for a long time!!