1 year kidneyversary

 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.

All of this was before Christmas

• 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 feel like I'm suffering from a case of whiplash, going between periods of intense treatments to periods of home life, and it's been difficult. When someone asks me how I'm doing, I have no idea what to say. I'm happy that my kidney is still functioning, but it is requiring a lot of me to keep it that way. There was an intense fear that I would have to go back to work. Both my long term disability and my social security disability start a clock 365 days post transplant to see if I'm healthy enough to resume working. I have some confidence that it'll be delayed now, but it's always looming. Honestly, when I first stopped working, I hated it. Didn't know how to fill all the time because if my available time was endless, then nothing was important. Now, after 11 years, I've figured that out and can easily fill a day. I carry a lot of the household things, plus my own health and Izzy's school stuff, and it fills the days quite easily. And, if I'm being honest, I don't really want to work anymore. And I can't imagine there are a lot of companies in today's environment that want to hire a 51 year old woman who's been unemployed for 11 years.

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.

2 years.....maybe?

I REALLY wish I would be more consistent posting here.  I used to block off an hour every Thursday night to write a post on my other blog and it was great.  For so many reasons I find that habit nearly impossible to stick with on this blog, and it's immensely frustrating.  So much happens between each post that I am daunted by the task of trying to remember and document it all.  I honestly wish that I'd stop putting myself in this spot, yet I continue as it's been nearly 20 days since my last post ;(

I've been continuing along with regular plasmapheresis since my last post.  I was at 3 days per week, and now we are trying to wean down to two days per week which is better, but it's still 8 hours of driving every week.  My schedule is Tuesdays and Fridays at this time because we're finding that Mondays are starting to get difficult to get me scheduled in PP.  As I've explained earlier, they have to do stem cell patients first, and there are apparently a lot of them lately.  Actually, there are a lot more people seeking help at Mayo right now than ever before.  Even the doctors and nurses are saying that they usually see a dip in the winter because people don't want to come to Minnesota then, but that wasn't the case this year.  So a schedule of Tuesdays and Fridays works right now.

We've been noticing that my hemoglobin has been really low the last few blood draws...hovering around 8.4.  I had one weekend where we were shuffling Izzy around to multiple birthday parties on a Saturday and all I could think about was the sofa at home with a blankie.  If there was an app where I could change the channel on the TV with my mind, I'd be all over it because my arms were tired.  Everything was tired.  And no matter how much I wanted to go go go, my body kept saying no no no.  My doctor ordered 2 units of RBC's (blood transfusion) and I had them on March 4th at the infusion center.  The infusion center has become one of my least favorite places lately because the infusions I get are long and boring, and now something always seems to go wrong with my body while I'm there, and this was no exception.  My body does not like blood products.  At all.  And the more I get them, the more extreme the reaction, which usually includes hives and super-high blood pressure.  The nurses started the first unit, and within the first 20 minutes I could feel something happening, but it wasn't awful and I was tolerating it, so I went on with it and made it through the first unit.  Then they hung the 2nd unit, and things started to change.  The nurse took my blood pressure and it was higher, but within my crazy bp range so I wasn't too worried.  I was warned by my doctor that my bp would rise a little, so I still felt okay.  But then I started itching a little, and I felt a hive on my left upper torso.  Just one, but it was a relatively big one, and that's all it took to stop everything.  It's protocol, but it's still frustrating.  We ended up losing an hour of time waiting on calls to doctors and meds (IV benadryl and solumedol (steroids).  Eventually things started rolling again, but slow, and I didn't end up getting out of Mayo until 7:30pm that night.  It ended up being an 8 hour infusion, and I ended up being there for 12 1/2 hours that day.

Somewhere between the infusion center and Applebee's (where I stopped to get something to eat because I hadn't had much that day) I realized that I lost my debit card, so I spent the snowy and windy drive home trying to convince my bank that I was who I was saying I was and to cancel the card and send me a new one.  Since Joacim has taken over the banking, I couldn't answer the simplest questions, and I was starting to think they thought I was a fraud case, but eventually I made it through the list of 7 questions and apparently answered enough right that I passed the test.  A pain in the ass, but I'm glad for the precautions.

Getting IV solumedrol is no picnic.  I'm glad that it stops the reactions I get.....SUPER glad, in fact, because they're miserable.  But the next 3 or 4 days after receiving the solumedrol is not fun.  Let's revisit some of the side effects:

• high blood pressure
• sleeplessness
• noticeably red face that feels very hot to the touch
• facial swelling

In previous cases it's looked like this:

red face, but not too much swelling

Can you see the difference in the width of my nose?

 Here's how I looked 2 days after the steroids this time:

No red face, but nose swelling again.

I didn't take a picture of my red face this time because we took Izzy to a movie (Star Wars, finally) so I could get out of the house but hide my weird face.  I'm glad it all goes away, and I'm glad that this drug is available to me and that it works, but MAN, I wish the side effects were less invasive to everyday life.

The great thing about all of this hassle is that my hemoglobin went up to 12 by the following Tuesday.  I.  Felt.  Amazing.  On Monday (March 7) I had a stupid amount of energy, so much so that I finally took some of the Christmas lights down.  That task has been completely out of my reach.  The subtle taste of spring we were experiencing didn't hurt either.  Even Tuesday, at Mayo, I did a lot of walking around during my waiting time, just soaking in how good I felt.  Last week was, by far, the best week I've had since Nov 3rd.  Absolutely no doubt in my mind.  I had also been getting weekly Aranesp injections at Mayo, but the waiting time was killing me at the infusion center, and I could totally do these at home, so we got that switched around now which is just one more thing within my control.

The one that doesn't appear to be fully within my control yet is my blood pressure.  I had a biopsy scheduled this past Monday as protocol for 4-months post transplant.  We also wanted to see if the FSGS was visible in the biopsy slides now, as I've been spilling a lot of protein for a while now. The last biopsy I had was on December 22nd when I had my peritoneal window surgery, and no signs of FSGS were there.  We know it's back because of the protein spillage and my history, but when it shows up in the biopsy it means it's more advanced, and we're all wondering if it has.  Logistically for us, it's a nightmare.  We have to kennel the dogs, find a kind soul (thank you Jessica and Blake) to watch Izzy, get her on the bus, take her to gymnastics, feed her and nurture her, and Joacim and I have to stay in a hotel in Rochester due to the risk of bleeding.  After working through all of that, I had it scheduled for Monday.  I did labs early in the morning, and then met with my PA to review them (but they weren't ready yet), and my biopsy was scheduled for 12:45pm.  We had checked my BP in my PA's office, and it was a teeny bit elevated, but it normally is at Mayo (I have an EXTREME case of white coat syndrome now :(  ).  When we checked in in the pre-op area for the biopsy it was a little higher, and each subsequent reading got higher, until it was 171/100...in other words, TOO high to do the biopsy because the bleeding risk is even greater.

I was frustrated, which doesn't help my blood pressure.  I went back upstairs to talk to my PA, he prescribed a quick acting BP med, and I took my regular 2:00 meds plus a Xanax, and went back at 3:15 to try again.  Blood pressure EVEN HIGHER this time.  So the biopsy was cancelled for the day.  We did get an ultrasound done though, and that turned out good.

I felt so guilty for all of the people I inconvenienced.   I know the whole BP thing is out of my control at this point, but it's MY body that keeps failing on me at every point, and there's no escaping the guilt I feel when Joacim misses work and my neighbors have be inconvenienced.  I honestly don't know what happened with my BP.  It's been well controlled at home for the last 2 weeks, so I don't know why, which frightens me because I can't say it won't happen again.  We're going to try again next week (I think) and I'm going to double up on BP meds, take the xanax earlier and ask for sedation (which sounds like a stupid amount of overkill from a couple of big needle pokes) but it's necessary.  We NEED to see what's happening with the kidney.  I could be experiencing rejection and not know it yet because it isn't showing up in the labs, so that's another source of worry.

I did a 24-hr urine this weekend, and I'm currently spilling 14 grams of protein.  It's awful, but it is what it is.

I had a blood draw and random urine this morning.  I have really great veins (not to brag or anything :) but phlebotomists tend to use them...a lot...and they're tired now.  It hurts when getting poked, and I'm having it done two to three times a week now, and they're just tired, so I asked the phlebotomist to use a different vein and showed her the one I wanted to use.  And then she said "but this is a good vein" and did exactly the opposite.  It was a misunderstanding at the end I realized, but it still sent me reeling.  I literally had to go find a quiet corner after it was done to just cry.  I am a walking a tightrope of emotions and sometimes, unpredictably and usually inconveniently, get the best of me.  There's no use fighting the tears and crying, because it just builds and my bp rises and bad things happen.

My doctor and I had a good amount of time today to discuss the status of things, and we both agree that the numbers aren't encouraging.  I'm slowly spiraling and the kidney is starting to show it.  He's has been and continues to be very nervous about my chest catheter, and I continue to be annoyed by it.  I've talked about a fistula before a few times, but he wasn't ready to discuss.  I think he truly fears that I feel like he's giving up on the kidney if we talk about things like that, but nothing could be farther from the truth.  I have such admiration and respect for him for trying so hard and being so invested in my long-term outcome.  I've realized he's a wildly optimistic man, and that has been exactly what I need as events unfold.  I continue to need that, but I also need a dose of realism and a plan.  He said today that I'd probably get a couple of years out of this kidney. He's can't predict it...no one can, but we both know that this beautiful kidney will fail sooner than any of us want and I'l be back on dialysis.  Peritoneal dialysis won't be an option for me this time, sadly, so it's a life of hemo for me.

I miss working out.  I've been slowly starting yoga, but I can only go so far because I start sweating, and that's kind of a no-no with the chest catheter due to risk of infection (at least the kind of sweaty I want to get with hot yoga eventually).  I can't swim with it..hell I can't even take normal shower or bath with it.  And wearing a bra is so hideously uncomfortable because I have to tuck it in the bra, and there are some really sharp edges.  It's also a huge source of infection, even though mine still looks great.

I will be able to use the fistula for plasmapheresis, and there's something appealing about getting use to using it at a lower run rate(60-90) than what's typically done for dialysis (300-400).  I'm terrified of fistulas, of course, because the pictures I've seen are absolutely hideous, but you're all going to have to help me get the hell over that because it will become my lifeline.  Somehow I'll have to embrace it, and you all are going to have to look at it because I won't hide it.  So I have an ultrasound scheduled next week to map my veins for the best location, and I'll be meeting with a surgeon to discuss the surgery itself and what the fistula will look like because, even though I look like hell most of the time, I'm still vain deep down inside.

Also, my hair is falling out at a pretty good amount now.  I posted about this the other day, but here's a comparison from 2 weeks ago to today:

 


Things are tough, no doubt about it.  But when I physically feel better, as I have the past week, I am MUCH better at handling all of the adversity.  A fistula will allow me to go swimming with Izzy this summer.  They take 6-8 weeks to mature, which means I'll have this chest catheter a least that much longer, but I'd rather get this moving right now as opposed to starting in June and missing out on another summer.

I saw this on Instagram today (@elephantjournal) and it sums up how I feel perfectly.  I want to get to the point of being healthy enough to enjoy that beautiful place.  And I've realized that the best word to describe me is not "strong" or "warrior"...it's resilient ((of a person or animal) able to withstand or recover quickly from difficult conditions.).  Yes, that's definitely me.

A photo posted by Elephant Journal (@elephantjournal) on Mar 15, 2016 at 8:41pm PDT

What's the scar look like?

I realized that I've never posted a picture of what the scar and everything else looks like, so here it is for those of you that want to be totally grossed out :)

Less than stellar news to report

We got the electron microscopy results back from my biopsy today, and it does appear that the FSGS is being rather aggressive and affecting my new kidney.  Preliminary results that I talked about yesterday didn't show it, but EM is the most accurate way to diagnose FSGS.

Obviously, not so stellar news.

I spoke to both my PA (in person) and my doctor (via phone today) to discuss next steps.  As of tonight (and I say that tongue in cheek because a game plan for me is a moving target), the plan is for me to be aggressive with plasmapheresis, so I'll do it tomorrow, Sunday and Monday, which will make 4 days in a row counting the session I had early this morning.  We'll do urine tests every day to see if the protein level is dropping, and on Monday I'll have another dose of thymoglobulin, which means another incredibly long day.  Plasmapheresis takes about an hour, and I usually nap through it, but the thymo infusion is around 4.5 hours, and time just crawls.  I will probably be at Mayo until around 9:00pm Monday night, so it looks like Annika and I will be spending the night down there.

It's a tricky balance right now.  It would be great if we could stop plasmapheresis temporarily to give the thymoglobulin time to work on the rejection.  The risk is that, if we stop, my protein will go through the roof and we'll never get it back down again, so we're trying to figure out what the optimal frequency is for someone like me.  I got the "you're an interesting case" schpeel again today, and prior to transplant I thought this was a good thing, because that meant more eyes on my case.  Now, that usually just means shitty news, and today was no exception.

I told Joacim and Annika that I needed some alone time, and I plan on going to Mayo by myself tomorrow and Sunday.  Plasmapheresis is pretty easy, and I'm able to drive by myself again since it's been a couple of days since I took oxycodone.

I could REALLY use a good night's sleep, but that is also elusive right now due to my high dose of prednisone.  I'm starting to taper from 60mg but it'll be another week before I'm back to 15mg, so another week of shit sleep.  To give you an idea of how bad it is, the other night I took 2 benadry. 1.5mg Xanax and an Ativan, and I still only got 4 hours of sleep.  I just lie there and thoughts swirl around my head, and there is no sleepiness.  I don't feel tired (sleepy) during the day, but I am tired of all of the lying around that I do.  There is just no way to keep myself entertained sufficiently during these treatments.

I miss yoga, but I'm a ways off from attempting even the most rudimentary of poses.  I don't want to risk a hernia developing anywhere near my scar, as that sounds truly awful.  The scar itself is healing quite nicely, but there is one area that's a bit hard, for lack of a better description.  It's right where my underwear and pants wear on it.  The weird thing is that I still have pretty much total numbness in the area of the kidney, as well as the top of my right thing, but I do get prickly sensations when fabric starts to rub against it too much.  Sensations are coming back, but slowly.

I did ask today how they determine that the rejection is reversing, and the only way to do that is via biopsy, so it looks like I may have to have another one around Christmas time.  Yippee.