Today marks one year since I received a second kidney transplant, and the thing people will wonder is "how am I doing"? And, as has always been the case on this blog, the answer isn't simple. When I first started writing this blog, it was so easy to sit down and pour out my thoughts, but now it seems almost impossible. I don't know if it has something to do with my inability to focus much right now, my absolutely "too many tabs open in my brain", or if I'm just emotionally dead inside.
How can 365 days past seemingly so quickly? I'm going to venture to say it's because, as the last time, I'm still under transplant care. Over the last year, I think there have only been 4-5 weeks that I haven't had an appointment at Mayo Clinic. I just read the last post on this blog, when I was 11-days post transplant and had to laugh a little. This was clearly written immediately before we saw the recurrence of FSGS again. Back then, 2 weeks post-transplant, Joacim and I were just talking about amazing it felt to not have any protein in my urine. And literally the next day I did labs and they showed protein in my urine. So that's why all of the appointments...we're still trying to keep it at bay and protect the function of the kidney.
I'll try to recall everything we've done so far, but it's been a lot:
- a kidney biopsy to confirm FSGS recurrence
- an infusion of obinitumumab to knock out my B cells in the hopes that it would work to beat down the FSGS, which did knock out my B cells but not the FSGS
- 9 weeks of LDL Pheresis (2 days a week of 3 weeks, and then 1 day a week for 6 weeks). Initially this was to be part of a clinical trial where the principal investigator was my transplant nephrologist, but the company sponsoring the trial with to dis-include me due to me taking thyroid medication. This was annoying and stupid, but I was still able to complete the course of treatment, but it didn't have a significant effect on the amount of protein I was spilling.
- so then we started plasmapheresis again. This didn't work much for me the last time, but this time it makes a significant positive impact on my protein spillage. So much so that sometimes my team has gotten a little over-confident with my results but also given me a much-needed break from Mayo (sometimes 3-4 weeks at a time), only to have my protein soot right back up
- After every plasmapheresis treatment (of which there would be 2-3 per week) I would do a 2 hour infusion of IVIG. After my last transplant we did a lot of plasmapheresis too, and a few IVIG infusions, but likely not enough as I became quite ill with a lung disease/disorder similar to something called bronchiectasis. So now we do IVIG after every plasmapheresis treatment to ensure I stay healthy, which has worked very well so far.
- I had a nice break from Mayo over Christmas...4 week in fact. But my protein levels got quite high, so we hit plasmapheresis hard after New Year's. We started out with 5 per week for 1 week, and then 3/week for 3 weeks, then 2/week and then 1/week for a couple more weeks, with a 2-hour infusion after each one of those.
- Somewhere in the middle of that we started a new medication called daratumumab. When my doctor talked to me about this medication and how it was to be administered, he said 16 weeks of an injection, however that was not the case. The first infusion was 6 hours or so, and it started on a Friday after plasmapheresis and IVIG. I was not prepared for this, hadn't had lunch and by the time I left Mayo at 9:30, every thing was closed. I didn't return home until 11:30pm that night, and I was enraged and exhausted. I even called the Mayo Patient Experience number to complain about this...the lack of communication from my team. I'm not exactly satisfied that it affected anything, unfortunately.
- Somewhere in March I got another break. I was literally in remission from FSGS....a place I hadn't been since 2008 if. you can believe that. but after another longer break, protein shot back up and I was back to plasmapheresis and IVIG.
- It gets a little fuzzy in my memory here, timelines and all, but most recently I think we're still trying to dial in exactly how much plasmapheresis I'll need and how often. I had another dose of obinitumumab a couple of weeks ago. I've been having my labs checked at Mayo in New Prague (a 30 minute drive as opposed to a 2 hour drive), as well as having my site dressing changed on my catheter and IVIG infusions. When my protein gets too high, I'll do 1-2 sessions of plasmapheresis. The plan for the next few weeks is to do labs Monday mornings and then plasmapheresis/IVIG on both Monday and Wednesday.
I've still tried to exercise as that's something that's always important to me, but it's not been easy because I've have this damn chest catheter since August (it was put it to start LDL Pheresis), and you can't really sweat with it because the bandage comes off and there's a risk of infection. I still sweat....it's getting to be that time of the year where it's inescapable unless I never want to go outside. Plus I'm perimenopausal now and suffer from frequent night sweats, so there's that. But hopefully next week I'll be able to get this chest catheter out and have 2 Apheresis PowerFlow ports put in. These are very similar to ports that someone on chemotherapy would have, but this one is designed for plasmapheresis access and flow rates. They are larger and buried under the skin, so the advantage is no dressings to change, normal showers where I can let the water run over my head, swimming in the summer and hot yoga classes. I'm worried that they'll stick out of my skin and people will notice them, but I had the same worries when I got my fistula and got over it pretty quick. Here's what the ports look like (I'll have 2 placed (one on each side of my chest, above my breasts, for supply and return):
Speaking of fistula, mine died. This one really pisses me off. I've been trying since my transplant to get a fistulagram (roto rooter) scheduled because my fistula has a tendency to want to close on itself. While on dialysis I'd get one done every 3 months or so because it did actually clot off one time. I had a revision done to widen the vein and had then done preventatively after that. But the thing about fistulagrams is that they require contrast dye to be injected during the procedure for visibility, but that dye is very hard on kidneys, especially newly transplanted ones, and there was no way my doctor was willing to risk it. So I understand the reason, but am still devastated that I lost it. I think my neph, and maybe transplant doctors overall, don't really concern themselves with fistula care because they don't think someone who had a transplant will need it. But I live in my real world with all of my real world experience, and it seems ludicrous that no one except for me was concerned about it. And no one really seemed to care about it after it died. I even went so far to have a fistula gram scheduled at Mayo for it, so Joacim took a day off to go with me, and I sat in pre-op for 2 1/2 hours past my appointment time, only for the doctor performing the procedure to walk in and say he wouldn't do it. I can't even go into it....it still makes me so very angry, but that's what happened. And so now, sometime in the future, I'll need to go through that whole terrible process of getting another one. More scars, less ideal locations....it all sucks so much.
Yes, of COURSE I'm happy that I'm not connected to a dialysis machine for 8-10 hours a night 4 times a week, but that doesn't make all of the rest of this okay. We still mostly determine my care on a week to week basis, so it's back to the terrible land of limbo, and wondering what'll happen next. And communication at Mayo has been a mess as compared to the last time. The administrative burden of being a patient right now is tremendous....the number of phone calls and messages to get appointments scheduled, or times corrected, or to explain to scheduling the treatments I'm supposed to be getting has been insane, and easily the biggest source of my frustration. Just the other day, when I went to bed I showed 5 appointments in my portal, but the next morning there were 29. They keep trying to schedule things out weeks/months at a time, but we LITERALLY go week to week. So that's 20+ appointments that are going to need to be cancelled/resheduled/moved, and that'll easily take 5 phone calls. And if I don't have to travel to Rochester and can do something in New Prague, then I'm going to go with that option. But in Mayo's system, that's a different geographical region which requires my doctor to write a separate order for.
And on top of all of this, I'm STILL actively managing my potassium and taking the same medications I took while on dialysis...ditto with my hemoglobin. Having Medicare this tine as my primary has been an experience. Mostly positive, but because of billing issues created by Medicare my secondary insurance company denies to pick up the remaining costs of 3 or my immunosuppressant mediations. That I'll take for the rest of my life.
I had hoped I would've taken a few trips that I dreamed about while on dialysis, but that hasn't happened either. I've only been to Tampa in August (steamy) to tour a college, and then to Indiana in January for a funeral. No Italy or Greece anywhere in sight. We've a trip planned for Norway this summer, but are concerned that the war in Iran will wreck that too, but still trying to be a little optimistic on that one.
And to wallow a little bit, I miss having someone to celebrate this momentous day with. Adam was my ride or die with our transplant (which we still celebrate in our own little way). I'd thought I could celebrate this with Joacim since it DID happen on his birthday, but he's on his annual fishing trip (the same one he was on last year). I was with my daughter all day but she didn't mention it. Thank goodness for a good friend who sent me a sweet message today or else it probably would've gone completely unnoticed by the universe.
I'll admit that I haven't written a letter to my donor's family yet. I feel terrible about it, but I keep waiting for good news to tell them, so that they felt good about their decision to donate their loved one's organs, but I just haven't figured out what to say. I keep thinking something will come to me, and it will, but I'd like to write something more than "Thank You".
As always, I wish I had amazing news to write. But also, as always, I'm giving it to you straight, warts and all. But I do want to convey that this kidney is so much happier and healthier at this time in the process than Adam's kidney was at the same time. Why it's so different is anyone's guess, but the FSGS seems to be less aggressive this time, and I've had 2 different medications that I didn't have the last time that could be making a difference. It'll always be a mystery, but it's entertaining to hypothesize on what's different.
Okay, I think that's about all I can write at this time. Thank you for your kind thoughts, your prayers and for reading this far :) I'm still fighting and not about to give up.
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