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!

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!

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!

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 2^nd 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!

Home!

After almost 2 weeks in the hospital, I'm finally HOME!

Still here

Aaand I’m still in the hospital.
 
We finally got the results we were waiting for back this morning, and my immunoglobulin G was indeed low. That meant I needed an infusion of IVIG to bring it back up and help me be more able to fight off infections, including this pseudomonas infection. Unfortunately the infusion takes a few hours, so there was no way we could get it done in time for my visit with home infusion. So I got to spend another day enjoying the amenities of Hotel HUP.
 
On the plus side, they’re running out of reasons to keep me here! The only thing left that could potentially cause a snag is that I need a dressing change tomorrow. I’ll be having home health nurses come out regularly to take care of the wound vac, but they aren’t available until Saturday, and I shouldn’t go that long between dressing changes. So we’re planning on a dressing change tomorrow morning before I’m discharged. This shouldn’t be a problem, but as we’ve already seen, you never know how things will go around here.
 
Hopefully, HOPEFULLY, tomorrow will be snag free, and I will finally be able to go HOME!

Still in the hospital

Well, I’m still in the hospital.
 
They didn’t get the wound vac on until Monday afternoon, which meant it was too late for me to have a visit from home infusion. And then the doctors who did the wound vac didn’t put in the right paperwork, so it took until today to get things set up with the home care company that will be taking care of it (which, by the way, is DIFFERENT from the company who will be responsible for my IV infusions!). AND ALSO my doctor ordered a test to see if I need an IVIG infusion to boost my antibodies and help me fight off this infection, and they still haven’t gotten the results back. So right now we’re planning on discharging me tomorrow, but we also planned on discharging me yesterday and today, so I’m not holding my breath.
 
I’ve actually been pretty out of it the last couple days. Unlike what they initially told me, getting the wound vac HURT. To put it on they first took out the gauze that was packing the wound, and then packed it with a special sponge instead, which was painful by itself. Then they put the wound vac hose over that and secured it with a dressing for a tight seal. And then they turned the wound vac on, which hurt some more. The first day they put it on I ended up taking both oxycodone and Dilaudid, so I was high as a kite and knocked out for the night. I did better today, until they had to change the dressing because my skin was reacting to the adhesive. So that meant taking out the sponge, putting in a new one, and hooking the vac back up –  which was, once again, painful. Today I was able to get by with just oxycodone, but that pretty much left me in a stupor all afternoon. Apparently I’ll be getting dressing changes every other day when I get home, so I’m definitely not looking forward to that. It’s currently unclear how long the vac will be on, since they just have to see how healing progresses. Right now I’m continuously chained to an IV pole, but fortunately the home machine comes with a carry case, so that’ll be a little easier.
 
So now I’m once again dependent on the home infusion company’s schedule to determine whether I can go home tomorrow. They need to know if I’m being discharged by 11am so they can get supplies out to my home for a 2pm nursing visit. Depending on when this last test result comes back, whether or not I need an infusion, and how quickly they can do the infusion if I need it, I MIGHT make it home tomorrow. But if we don’t have an answer by 11am, discharge will be pushed off yet another day. Here’s hoping the last pieces fall into place SOON!