And the verdict is… no more surgery!!!
I saw the plastic surgeon last week, and he
said my wound is all healed up and doesn’t need any further intervention! That
was a HUGE relief!! I also had a transplant appointment last week, and my lung function
was at 99%! Which means that once again I have weathered a respiratory virus
without triggering any rejection. Whew! I’m SO glad to finally put this round
of medical drama behind me!!
That doesn’t mean I have nothing left on my
plate however. Now I need to catch up on stuff that got pushed off while I was
dealing with more pressing issues. A big one is that I still need to get a
tooth extracted, which my transplant doctor wants me to prioritize due to the
risk of infection. I also have a follow up hearing test and ENT appointment to
see how I’ve recovered from the pseudomonas infection in my ear. In a couple
months I need to get an ultrasound to make sure the DVT in my arm has resolved,
and I might need to follow up with hematology since this is the second time I’ve
had a PICC induced blood clot. Then there’s the standard stuff like getting a
mammogram and following up with my diabetes doctor. Never a dull moment!
I also now have a primary care doctor for the
first time in decades! A few weeks ago I randomly started having pain in my
shoulder. My transplant team sent me for an x-ray to make sure my bones were
ok, since they’ve been weakened by years of steroid use. Thankfully nothing was
broken, so they told me to follow up with a primary care doctor, since joint
issues are really outside their area of expertise. So I got to overwhelm a
primary care doctor with my insane medical history, which was actually kind of
amusing. She was so overwhelmed, in fact, that she scheduled a second, longer
appointment to finish going through everything. In the meantime, I have
shoulder exercises to try before looking into PT. And I also have an orthopaedic
appointment to deal with some on and off hip and foot pain that has been an
issue for years but I never bothered dealing with. Look at me having normal
people problems!
Finding out that I don’t need further surgery
and that my lungs are doing well was GREAT news after over 2 months of medical
drama. Hopefully I can stick with my baseline level of medical involvement and
avoid any more urgent issues for a good long while!
Laughter is the Best Chest PT
The experiences, thoughts, and ramblings of an adult with Cystic Fibrosis.
Tuesday, February 25, 2025
Monday, February 3, 2025
Not the best
Well, it wasn’t the WORST doctor’s appointment,
but it also wasn’t the best.
Last week I saw the plastic surgeon who is in
charge of my wound. Though the wound looks like it’s closing well on the
outside, there’s still an open pocket under the surface that hasn’t closed. The
plastic surgeon said it’s currently unclear whether or not that pocket will
close on its own. It’s possible that my body has formed a sort of film inside
the cavity that will prevent it from closing entirely. We’re giving it 3 more
weeks, and if it hasn’t made significant progress by then, it will have to be
closed surgically. Unfortunately that would mean putting me under general
anesthesia, re-opening the outer incision, excising the film from inside the cavity,
and putting in a drain before sewing everything back up. I’m REALLY hoping
things look much better in 3 weeks, because I do NOT want to have to go through
surgery and a lengthy healing process all over again. There’s no way to tell
what will happen though, so all I can do now is wait and see.
I was pretty unhappy after that appointment. I
had no idea this was coming, since everything looks like it’s healing great
from the outside. I feel like the last 2 months have just been one medical issue
after the next, with no end in sight. And I’m REALLY upset at the thought of
having to go through ANOTHER painful surgery and recovery. I’m trying to be
hopeful that maybe things will improve over the next few weeks, but it’s hard
when it feels like every time things start looking up I end up getting punched
back down again.
2024 ended really poorly, and so far 2025 hasn’t
been going much better. Honestly, just typing all this out kinda makes me want
to scream! Let’s hope things turn around soon so I can finally move on from
this round of medical shenanigans.
Wednesday, January 22, 2025
Unwanted excitement
Never. A dull. Moment.
I finished my last dose of IV antibiotics on 1/8.
The Infectious Disease doctor wanted me to keep the PICC line in for another
week to see how I did off the antibiotics, but no longer running 3 hour infusions
3 times a day meant I could finally SLEEP. I felt sooo much better after just a
couple nights. It’s amazing what getting a halfway decent night’s sleep can do!
On 1/9 I saw my new transplant doctor. I
already knew her from prior hospitalizations, and actually had her during part
of my inpatient stay last month. We skipped my usual PFTs (Pulmonary Function
Tests) since I was still recovering from RSV and she didn’t want me to see bad
numbers and be alarmed. They also did another viral swab to see if I was still
positive for RSV. Despite my symptoms being significantly better, the swab
still came back positive. Apparently RSV can last for a long time in
immunocompromised patients, but it’s unclear whether I’m actually contagious,
as the test can also pick up dead virus. Thankfully, aside from some lingering
shortness of breath, my symptoms have pretty much cleared up.
On 1/13 I had my regular weekly lab work, which
surprisingly showed that my white blood cell count was high. Everyone was
confused by this, as it hasn’t been high through the last several weeks of
fighting various infections, and I wasn’t showing any current signs of
infection. I also informed my transplant team that I was having some off and on
pain in my other transplant incision, which made everyone nervous about a
potential infection brewing there. So we decided to keep the PICC line in a bit
longer until I could get a chest CT scan with contrast and see what was going
on.
Which brings us to Saturday.
On Saturday, I noticed that the arm with my
PICC line was kinda discolored and swollen. My mom came over to check it out
and agreed that it didn’t look right, so I called the home infusion company
that was managing my PICC line. They told me to reach out to my team, so I
spoke to the transplant doctor on call, who thought it sounded like it could be
a blood clot and said I should go to the ER. She suggested trying Pennsylvania
Hospital instead of HUP, as they are still in the Penn Medicine system but might
be less busy than the typically insane HUP ER. And sure enough, the waiting
room was almost empty and I went right back! One ultrasound later and we confirmed
that I did indeed have a PICC induced blood clot, aka a DVT (Deep Vein
Thrombosis). Thankfully the CT scan did not show a pulmonary embolism, which is
a potential complication of a DVT… but this is where things went off the rails.
Because what the CT scan DID show was a “gaseous collection” at my surgical
site, which could be an indication of infection. And after having a surgical
washout and weeks of IV antibiotics, I should NOT have any signs of infection. So
now what should have been a quick DVT diagnosis and prescription for blood
thinners turned into being admitted to figure out what the heck was going on.
BUT Pennsylvania Hospital wasn’t equipped to handle my complicated case, so I
had to be transferred to HUP, which didn’t have any beds available. Which meant
I got to wait in the ER until HUP could take me. Between waiting for testing
and waiting for a bed, I spent about 18 hours in the ER before finally getting
into my room at HUP. Fun fun!
Being transferred was a little exciting because
it meant I got to ride in an ambulance for the first time in my life.
Shockingly, despite my lifetime of medical drama, I had never actually been in
an ambulance! It only lasted like 10 minutes and was pretty low key, but it was
definitely a new life experience.
On Sunday I settled into my room at HUP and
they got me back onto IV antibiotics until they could figure out what was
happening. The figuring things out part didn’t really happen until Monday
though when all the specialty teams were back in business. So that meant
consulting with the lung disease team AND the cardiothoracic team AND the
Infectious Disease team AND my surgeon. And thankfully, after various tests and
consultations, everyone decided that my wound was healing fine, that there was
no sign of infection, and that the “gaseous collection” was just a pocket that
hadn’t finished healing yet and needed more time to close up. Which meant that
on Monday afternoon, after pulling the PICC line and giving me a prescription
for blood thinners for the DVT, I was free to go!
It was an EXHAUSTING weekend! Thanks to the ER
trip I ended up being awake for over 24 hours from Saturday afternoon to Sunday
night, and of course sleeping in the hospital Sunday night wasn’t exactly
restful. Getting a full night’s sleep Monday night was wonderful! And then on
Tuesday, for the first time in over 6 weeks, I was able to take a lovely IV
free shower. Getting the PICC line out is a HUGE relief, as it was in an
awkward location and has been hurting me for weeks. I’m one step closer to
being fully recovered, as all I have left now is my wound, which is getting
smaller by the day and healing very well. I have a follow up appointment with
the plastic surgeon next week, so we’ll see what he thinks about my progress.
Hopefully that was the LAST of the drama for this
round of medical shenanigans, and I can stick with regularly scheduled
appointments from here on out!
Thursday, January 16, 2025
Feeling thankful
I am so fortunate to have such a strong safety
net supporting me through these difficult times. I don’t mention them enough,
but I absolutely don’t know what I would do without them. Huge shout out to my
good friend Shira Baratz, who set up a meal train for me a couple weeks ago. We
kept it small because I have so many risk factors around food safety, so I wasn’t
comfortable opening it up to the community at large. I also only wanted meals a
few nights a week so I didn’t get overloaded with too much food that I couldn’t
eat. But within those parameters, Shira and my other friends who signed up for
meals really came through! It made such a difference having hearty meals
readily available when I was too exhausted to think straight. I’m so grateful
to my friends for their help!
Then of course there’s my mom, who has been my
supporter and advocate for my entire life. I can’t imagine how stressful and
challenging it was raising a child with intensive medical needs who wasn’t even
expected to live to adulthood, but somehow she did it! Squeezing numerous hospital
visits into a busy work schedule isn’t easy, but she was there during my recent
inpatient stay just like she always is. And I also know that my stepfather,
Frank, is always up for a Shoprite run when I need one, which was particularly
helpful when both Katherine and I were laid out with RSV! I’m very blessed to
have such a supportive family and I am very thankful for them!
And then of course, last but not least, there’s
Katherine. However complicated you think my life is just from reading these
updates, I guarantee you don’t even know the half of it, and Katherine is right
here by my side every step of the way. Not only does she have to handle her own
stress and exhaustion, but she’s also always there supporting me both
physically and emotionally every single day. I don’t know how I got so lucky to
score such a strong and amazing partner! I love her to pieces and thank G-d for
her every day!
Tuesday, January 7, 2025
Slowly making progress
It’s been a long haul, but I’m finally, slowly,
getting somewhere.
Katherine and I are utterly exhausted. We haven’t
had a decent night’s sleep in weeks, and it is seriously wearing us down. Then
of course we’ve had to deal with RSV symptoms on top of that. Katherine says it’s
the worst cold she’s ever had. My congestion got pretty rough last week, but
thankfully I finally turned the corner over the weekend and seem to be on the
mend. We’re very grateful that my symptoms didn’t get out of hand and that I
was able to stay out of the hospital. But now there’s the anxious waiting
period that comes with any infection, in which we monitor me closely afterwards
for any signs of rejection. So far in the last year I’ve managed to make it
through 2 viruses without triggering rejection, so here’s hoping virus #3 is
the same!
Last week I saw the plastic surgeon, who is the
doctor in charge of my wound. He said it was healing well, and that it was up
to me if I wanted to keep the wound vac or switch to a regular dressing. Well once
he gave me the option, you know I jumped at the chance to get rid of the wound
vac! Let me tell you, getting rid of that thing was SUCH a relief! I’ve had so
much less pain and been so much more comfortable without it. The trade off is
that the dressing needs to be changed every day, but the visiting nurses don’t
come out that often. And because of the location I can’t see or access the
wound to dress it myself. So it’s a good thing that Katherine has become less
medically squeamish over the years, because she is now in charge of dressing
changes! She has done a great job stepping up to the challenge despite some involuntary
horrified facial expressions.
I also saw the Infectious Disease doctor last
week, who is in charge of my IV antibiotics. She actually was ready to stop the
antibiotics last week, but needed to consult with all the other teams who are
currently following my case. So that meant coordinating with lung transplant
AND the plastic surgeon AND my transplant surgeon who did the surgery. She
finally got back to me today, and said I can finish up tomorrow’s doses and
then be DONE! Katherine and I are both looking forward to FINALLY being able to
get a full night’s sleep without waking up to run an infusion! I won’t be rid
of my PICC line quite yet though, as the Infectious Disease doctor wants to
wait a week after stopping antibiotics to see how I do before removing it. But
I’ll gladly put up with the discomfort of a PICC line as long as I can get some
sleep!
I still have a ways to go with my wound. The
plastic surgeon said that normally he’d expect a wound of this size to take 4-6
weeks to heal, but since I’m immunosuppressed it will likely take longer. I
have a follow up appointment in a few weeks to assess the progress. If he feels
it’s healing too slowly he will stitch it up, but otherwise we will continue to
let it heal on its own. Thankfully the wound really hasn’t been painful since
the wound vac came off. In fact the most uncomfortable part is the tape from
the dressing. My skin is really sensitive to adhesives, and having dressings
taped to my side for the last few weeks hasn’t been doing it any favors. I’m definitely
not excited about continuing to torture my skin over the next however many
weeks while this heals. We’ve been experimenting with different tapes and
bandages, so hopefully we can find something that my skin can tolerate.
I feel like I’ve really been through the wringer
over the last month, and I still have a ways to go. But thankfully I am finally
starting to see the light at the end of this tunnel!
Sunday, December 29, 2024
Not just a cold
Well, it’s not just a cold. It’s RSV.
My transplant team doesn’t mess around with any
signs of infection, so even though my symptoms weren’t too bad to start with,
they brought me in for a viral swab on Tuesday. We got the results on Thursday,
and it turns out I have RSV. Unfortunately there isn’t much they can do for RSV
aside from symptom management. So I’m taking Mucinex, and doing nebulizers twice
a day, and trying to stay super hydrated. Normally they would have also given
me steroids, but they don’t want to do that since I still have an open wound,
and steroids can impede healing. Instead they prescribed an antiviral, which I
started yesterday.
Things have honestly been pretty pathetic
around here. Katherine is also sick, and we assume she also has RSV. She’s been
utterly miserable and says it’s the worst cold she’s had in her entire life. My
symptoms were more manageable to start with, but over the last few days I’ve
had a significant increase in both head and chest congestion. Though I can feel
the congestion rattling around in my chest, I’m having a REALLY hard time
getting any of it out. I already have trouble clearing congestion due to my
airways narrowing post-transplant, and I have a feeling they’re even narrower
now thanks to the RSV. It’s pretty uncomfortable, and I had a hard time
sleeping last night because I kept feeling like I was choking on mucus. Today
has been a little easier, so hopefully I’m past the worst of it. Fortunately I
haven’t had any fever and my oxygen levels have remained stable, so maybe I’ll manage
to stay out of the hospital and finish weathering it at home.
RSV would be a lot even under the best of
circumstances. But I’m also dealing with the wound vac and an exhausting
infusion schedule. I also have a busy week coming up, with appointments with
the plastic surgeon as well as with Infectious Disease. It really is A LOT to
deal with all at once, and I’m feeling pretty beat down. I feel like after
having a couple years where things were relatively quiet medically, I’m now
making up for it all at once! Maybe this week I’ll finally get some answers as
to when I can be done with the wound vac and the IV antibiotics and start
getting back to some semblance of normalcy!
Monday, December 23, 2024
Keeping busy
It’s so good to be home!
What a relief to be out of the hospital! I am GREATLY
appreciating my comfy bed, and having access to a kitchen full of food whenever
I want, and finally getting some peace and QUIET away from all the noises and
interruptions and poking and prodding of the hospital! And, of course, getting
to be with my amazing partner, who deals with so much and takes such wonderful
care of me! Home is good!
That doesn’t exactly mean I’m living my best
life here. I still have the wound vac, which is uncomfortable at best and
sometimes pretty painful, particularly during dressing changes. My skin can be sensitive
to adhesives, and less than 24 hours after the wound vac was put on I actually
got a welt from the first dressing they used. The welt is slowly healing, and
we’re using a different dressing now that I’m less sensitive to, but my skin
still isn’t loving it and I’m often itchy. Then there’s the dressing changes, during
which they remove and replace the sponge packing the wound. This happens at
least 3 times a week, and is painful every time. Most of the time I can get by
without taking anything stronger than Tylenol, but for dressing changes I take
a small dose of oxycodone to make things more comfortable. There’s still no
word on how long I’ll have the wound vac, but it will be for at least another
week, which is when I have an appointment with the plastic surgeon to assess my
progress and see if they’re ready to stitch me up. So far everyone has said
that the wound is healing nicely, so I’m hopeful that I won’t need the wound
vac much longer!
Aside from all that, I’m also on a pretty rigorous
infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm,
and each infusion runs for about 3 hours. To make it more complicated, for some
reason the pharmacy isn’t able to fit the full dose into one bag, so halfway
through each infusion I need to switch to a 2nd bag. All that doesn’t
exactly leave a lot of time for sleeping. I’m definitely getting much better quality
sleep at home than I was in the hospital, but both Katherine and I are still pretty
exhausted. Right now they haven’t set an end date for the antibiotic, and are
waiting to see how the wound heals. I do have an appointment with Infectious
Disease at the end of next week though, so hopefully we’ll have a clearer plan
then.
I’ve also been kept busy with nursing visits! I
have 2 home care agencies following me, one to take care of my infusions and
PICC line, and one to take care of the wound vac. I had an infusion appointment
the day I came home, and then a wound vac appointment over the weekend. And
today was especially busy, because I had both! The infusion nurse came in the
morning to draw my weekly labs and change the dressing on my PICC line, and the
wound care nurse came in the afternoon to change the dressing on my wound vac. That
will be the schedule every Monday for as long as I have both the IVs and the
wound vac, and it’s a lot! In addition to that I also have wound vac
appointments on Wednesdays and Fridays. Being sick is a lot of work!
And because we didn’t have enough going on,
Katherine and I came down with colds over the weekend. Katherine is feeling
pretty miserable, but thankfully my symptoms aren’t too bad so far. But my
transplant team doesn’t mess around when it comes to infections, so tomorrow we
need to shlep back into Philly so they can take a viral swab and try to identify
what I’ve caught. Planning anything is difficult with my infusion schedule,
plus I have to lug the wound vac with me wherever I go, so I’m not exactly
looking forward to leaving the house. At least it shouldn’t take long.
So that’s the story around here. My days are jam
packed with medical shenanigans, and I am TIRED. But I am very, very glad to be
dealing with all this from the comfort of my own home!
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