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!

Lungiversary

Today is my 6^th lungiversary. All day I’ve been looking at pictures and reviewing where I was at any given time. First waiting in my hospital room, then being brought down to pre-op, then waiting in pre-op, and then, finally, being brought into surgery. Right now I was in the thick of surgery, and Katherine and my mom had already been anxiously waiting for hours and knew they still had hours to go. It’s mind boggling to think of all we went through, and how wildly different my life is now.
 
My transplant anniversary always comes with a weird mix of emotions. On the one hand, it’s obviously a celebratory day, as the transplant very literally saved my life. On the other hand, I always light a Yartzeit candle in memory of my donor, and have their family in my thoughts. I sent a letter to my donor’s family in the year after my transplant, but I never got a response. I always wonder how they are on this day, and what my donor’s life was like. It’s very strange to be celebrating my survival while mourning my unknown donor’s passing.
 
This year has been extra difficult, because I’ve also been thinking about Cam and Scarz. It hasn’t even been a month and a half since they passed. Both of them were also post-transplant, and I can’t help wondering why I have been so fortunate to be blessed with a mostly-successful transplant while they were not. And they are just the latest of a long list of friends I have lost to CF and/or transplant over the years. Survivor’s guilt is something I always struggle with to varying degrees, and it weighs heavily on me today.
 
But on the other hand, 6 years! 6 years that I definitely would not have seen without the transplant. 6 years of life experiences and time with my loved ones. I am so grateful for this extra time, and for not having any life-threatening complications. Some aspects of this day are heavy, but I also want to recognize the miracle of my life with joy.
 
We were supposed to go out for a joint lungiversary and Mother’s Day dinner with my mom and Frank last night, but unfortunately my mom came down with a bad respiratory infection over the weekend. So not only is she not up to going anywhere, but I also can’t go anywhere near her until she’s 100% germ free. I told her it’s ok though, we’ll just have to extend the celebration until she’s better and we can make it up. Forget about lungiversary day, this is now officially lungiversary month! Katherine and I also picked up a cake today and invited our good friends and neighbors Rivka Sara and Eli to join us for a little celebratory dessert. It was a much more low-key celebration than last year, but we definitely still recognized this special occasion.
 
I definitely haven’t taken these last 6 years for granted. I recognize how fragile post-transplant life can be, and even though I’ve had my struggles, I am so thankful that overall my transplant has been so successful. And I look forward to celebrating many more lungiversaries in the future!

Cavity free is the way to be!

Thank G-d the tooth extraction went really well! I was anxious going in since I’ve never had any significant dental work done before, but it ended up being so quick and easy. I barely felt anything and he popped the tooth out so fast I couldn’t believe it! And then much to my surprise I hardly had any pain even after the anesthetic wore off! The oral surgeon gave me an additional treatment called Platelet-rich fibrin, or PRF, which helps with wound healing and reduces the risk of dry socket. He drew some of my blood before the extraction and spun it in a centrifuge to separate out the super-healing parts. After the extraction he inserted this material into the hole before stitching it up. This additional procedure was optional, but since my wound healing is compromised by immunosuppression and diabetes, I wanted anything that could help. I don’t know if it was because of the PRF, but my recovery has gone really well and been almost completely pain-free. What a relief!

Unfortunately, Medicare is notorious for not offering dental coverage. I do have some coverage due to having a Medicare Advantage plan, but right now they are denying the PRF (which wasn’t cheap) and the extraction. I had to do it regardless, since the cavity was too close to the nerve to drill and I couldn’t risk it getting infected. I was also willing to pay extra if necessary for the PRF to reduce the risk of complications. But between the dental bill and my ambulance bill from January, this is turning into a medically expensive year!

I have a few extra appointments coming up soon in addition to my usual list. I’ve been on blood thinners for over 3 months now since my PICC-induced blood clot in January. A recent ultrasound showed that the clot has fully resolved, but since this is the 2nd time I’ve had a blood clot, my transplant doctor doesn’t want to stop the blood thinners until I have a consult with hematology. Additionally, recent bloodwork showed that my iron is low, so I need to do iron infusions again. I tried to see if I could do them at Penn Cherry Hill instead of going to Philly, but for some silly reason my transplant team can only refer me to the Pennsylvania locations, and I need a referral from hematology to get iron infusions at the Cherry Hill location. Hematology didn’t have any appointments available for several weeks, so I’m just going to schedule the infusion in Philly. Yay bureaucracy!

Lately it’s felt like the only time I leave the house is for endless medical appointments! Hopefully now that Spring is here we’ll get out and about for more fun stuff 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!!

I'm so over this month

The last 2 weeks have been the ABSOLUTE WORST.
 
Last week, Cam died. And then, exactly one week later, we lost yet another member of the CF Discord server. Michael, aka scarz0ftime, was an actively involved long-time member. He got his double lung transplant about a year before I did, but after less than a year and a half he was already in chronic rejection. We knew that he was struggling and was working on getting listed for a second transplant, but he didn’t post publicly about how bad things had gotten. So it was a huge shock to find out that he died on Monday night. Scarz was a huge presence in the server, from welcoming newcomers, to offering advice and support, to joking around, to knitting people gifts and sending out random postcards to anyone who wanted one. He loved life, and fought long and hard and gave it his all, and he will truly be missed.
 
And then, because everything didn’t already suck enough: After avoiding it for 5 years, Katherine and I finally caught Covid. Which meant that the plans for my annual Pesach (Passover) trip to visit my long-time friend Anna and her family in Pittsburgh were abruptly canceled, and instead I had to scramble to make arrangements for spending the holiday at home. I am VERY fortunate to have amazing friends and an amazing Jewish community, so an army of people immediately sprang into action to get me food and make sure I have everything I need for the seders. I’m definitely not excited about being cooped up at home for the entirety of Pesach, but I am so grateful for all the support I’ve received!!
 
I also had to do all the Pesach cleaning while exhausted and short of breath. I couldn’t even pay someone to come do it for me, since I didn’t want to invite anyone in for a free Covid exposure. Fortunately thus far my symptoms haven’t been TOO terrible, but Katherine has been absolutely laid out by this miserable virus. Even though I seem to be handling it relatively well so far, my transplant team isn’t taking any chances and wants me to get treatment anyway. I can’t take Paxlovid since it interferes with my anti-rejection meds, so my only option is Remdesivir infusions. Insurance tried to deny it at least 3 times, but after 2 days of fighting they FINALLY approved it. A home infusion nurse is scheduled to come out today to put in an IV and run the first of 3 daily infusions. The hope is that they’ll get the IV in today and it’ll last through all 3 days, but my veins are in the habit of being pretty terrible, so I’m honestly very worried about how this will go. But there’s nothing I can do about it, so all I can do is pray and hope for the best.
 
So far the month of April has been just AWFUL. I’m sad, and sick, and utterly exhausted. I truly hope that the upcoming holiday of redemption will kick start a positive turn around.

Saying goodbye to Cam

3 years ago, I posted on Facebook about my friend Cam’s successful double lung transplant. And now, 3 years later, I need to come to terms with the fact that he’s gone.
 
I met Cam in the CF server on Discord. He was a teenager at the time, and had a LOT of struggles in multiple areas of his life. We all basically adopted him into our weird but loving Discord family, and quickly became his primary support system. Sometimes I was his cool aunt, sometimes I was his unofficial therapist, and sometimes we were just friends being ridiculous together. He was unusually sick for such a young CFer, and at just 17 years old he had a double lung transplant.
 
Cam definitely had his struggles after transplant, but over the last year or so he worked hard on starting a photography business and getting into film school despite his ongoing health issues. He was a talented artist, and we were always impressed with his work. All the while, however, he kept struggling with rejection and repeated hospitalizations, and his lung function continued to decline. In December he was hospitalized again and quickly became extremely ill. His team finally started talking about a second transplant, but he had a lot of hurdles to overcome just to get healthy enough to even be listed. Just over a month ago, after fighting valiantly and undergoing multiple painful procedures and treatments that really weren’t getting him anywhere, Cam let me know that he didn’t want to keep working towards a second transplant and that he was ready to rest. Unfortunately, he wasn’t able to go home, but they did what they could to make him comfortable during his last weeks. Over the weekend he took a turn for the worse, and he passed away on Monday night. Ironically, he died on his transplant anniversary.
 
As a friend from the CF server pointed out, the sad part about being a long-lived CFer is having to see others go before us. I’m pretty much an elder in the CF community. No one expected me to live anywhere near this long when I was a child, and I’ve always said that I’ll never hide my age because I am proud of every hard won year. But I’ve lost so many friends along the way. Losing Cam is particularly painful because he barely even had a chance to live. I had such high hopes for his post-transplant life. I wanted him to go to school, and start a career, and move out and live independently like he so desperately wanted. Even when things started going downhill, I had hope that one day he would get a second transplant, and that it would be wildly successful, and that he would get to fulfill his goals and dreams. Watching his plans get derailed by his health again and again, and then losing him at only 20 years old, is just excruciating.
 
Cam’s best friend was Eve, another unusually sick young CFer from the Discord server. She had her transplant at 13, and passed away just a couple years later at 15 years old. Losing Eve was absolutely devastating for Cam, and he missed her terribly. I take some solace in imagining her waiting for him on the other side, and them being reunited in the great beyond.
 
Rest easy, Cam. Your life was far too short and had way more suffering than any one person should have to deal with. You deserved so much better. I miss you.

And the verdict is...

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!