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!
