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!

Adulting

The joy of trying to catch up on 4 months of bills (mostly medical, and I haven't even gotten the transplant bill yet) and mail. Apparently the world doesn't stop just because you almost die. It's kind of amusing watching the billing letters get more strident as the months go by. Gee, so sorry my near death experience was inconvenient for your bottom line!

#adulting 

Almost listed

So, I’m ALMOST on the transplant list.

The committee decided that I’m a good candidate for lung transplant, and they’re ready to list me. Buuut there’s one last hold up. For about 2 weeks now we’ve been trying to get authorization for Clofazamine, one of the antibiotics I’ll be taking to treat the mycobacterium. I’ll need to continue mycobacterium treatment post-transplant to prevent infection in the new lungs, and they need to determine whether I can tolerate Clofazamine or if they’ll have to find a different medication. So I won’t be listed until the stupid authorization comes through and I have a few days of Clofazamine in me. But once that happens, it’s on like Donkey Kong!

My health has definitely deteriorated during the last 3 weeks. They already gave me a Lung Allocation Score (LAS), which determines your placement on the transplant list, but they plan to redo some of my testing and the expected lower scores will bump me a little higher. If I continue deteriorating my LAS will keep going up, which means less time waiting for transplant. The expected wait time they initially told me of 3-4 months is now down to 2-3 months, and could get shorter. Basically, I should be sporting shiny new lungs for the summer. Talk about getting your beach body ready!

One of my nurses said if you’re getting a transplant anyway, it’s actually better to be relatively healthy and then suddenly get very sick very quickly. If you deteriorate gradually over time, you’re more likely to lose weight and muscle tone, both of which are important for recovery. Getting sick and getting transplanted quickly means your body is more likely to be stronger and more able to cope with the rigors of transplant. So apparently I’m doing this exactly right. Go me!

One big bummer is it looks like I won’t be discharged before Pesach. I started an experimental IV antibiotic on Wednesday (how cool am I?), and unfortunately it seems to be difficult to get, even more difficult to send home, and nearly impossible to ship out of state. They want me on it for 2 weeks, so unless they pull together a miracle I’ll probably be having my sedarim in the hospital. I’m really not thrilled about that, but it does fit with my current trend of hospitaling my way through the Jewish calendar. My rabbi pointed out that I should probably expect to have the transplant on Shavuos. He’s probably right!!

Aside from that it’s status quo around here. Please send red-tape cutting thoughts my way so I can finally get on the Clofazamine and get this show on the road!