30-days post transplant update

It's hard for me to figure out where to start when it comes to these updates because SO MANY things happen during the week.

The last post I wrote was on Saturday after my first thymoglobulin infusion as an outpatient, and I was feeling miserable.  Luckily, by Sunday, I was back to feeling more like myself.  I had another horribly long day on Monday, with labs, plasmapheresis, doctor's visit, thymoglobulin infusion and IVIG infusion.  All of those procedures required us to spend the night in Rochester, but we stayed at a Fairfield Inn this time which was MUCH better.

I had prepared to feel absolutely awful on Tuesday like I had on Saturday, but I felt completely fine.  On Tuesday morning I just had labs and then we headed home.  Once home I went to visit my friend Julia just for some normalcy in my life, and I was lucky enough to get in with my stylist to update my 'do (sorely needed).  It was just a decent day.  But then I looked at my lab results and I just knew something wasn't right.  With the first dose of thymo, my protein had dropped from 2500 to 450.  Sunday's labs showed that it was at ~800, and Monday it was at ~1000.  By Tuesday it was ~1100.  I had expected it to plummet again on Tuesday after the thymo, but the fact that it went up just devastated me because it meant something wasn't working.

I went to Mayo yesterday expecting to do labs and plasmapheresis, but at the end of plasmapheresis, the nurse sent me up to the 10th floor because my PA wanted to see me, and at that moment I knew it wasn't good news.  Turns out my doctor had decided to do another dose of thymo that day, but couldn't get me in until 1:45pm.  I found out at 10:00am.   I was absolutely livid.  I mean, I have gone along with EVERYTHING they have thrown at me, but this particular last minute decision really bothered me.  I mean, what would they have done if I had decided to drive down to Mayo by myself that day because the only thing that was scheduled was plasmapheresis?  Thymo infusions require benadryl for pre-meds, and I wouldn't have been able to drive home.  All of my meds for the next day were a home...I had no clothes with me or anything.  I kinda lost it on my PA and requested my doctor to come over during my infusion so we could talk.

I understand that nearly every decision that's being made right now is based off of a lab result, so it's nearly impossible to predict what's going to happen, but I believe they always planned on giving me  doses of thymo, and they just forgot to tell me in this case, and I find it completely unacceptable.  Hopefully, after our conversation, we've come to an understanding about how important it is to over-communicate right now.  We also talked about the need to come up with a long-term plan, as Annika is scheduled to fly home on Tuesday, and I'll need to find some volunteers if there are any plans for longer infusions in the future.  My doctor talked about finishing up the testing to get me discharged from the transplant center (just a formality) but it includes things like a bone density scan, and 24-hour urine for baseline and a couple of other things that will start happening next week.

Annika and I didn't get home until 10:30 last night.  That was a 17 hour day.  I'm pretty sure those aren't ideal conditions for me to heal, and I did feel pretty awful last night and this morning when I woke up.  I had a fever of 101.6 so I just stayed in bed until 12:30pm this afternoon.  I got up and snacked a little because my appetite is still pretty paltry, and took a walk around the neighborhood.  Since all I seem to do is lie down and have plasmapheresis and infusions, my bowels have slowed to a crawl so I need to force myself to go out and walk to get things moving.

I have no idea what tomorrow holds.  I know there are labs and plasmapheresis, and I think a visit with the team, but no idea what else.  Please keep your fingers crossed that it's a light day and that I make it home a decent time.  The plan is to have 2 whole days at home this weekend too. so that all be great if it happens!

Another eventful day

Today was supposed to be an easy day, with a urine test in the morning and plasmapheresis.  I had planned to be home by noon.  I got home at 4.

Lots of things went wrong, particularly overnight.  I had the worst chills overnight...like physically wrecking my body chills.  I always sleep with a heating pad now, but that wasn't even making a dent in my coldness.  And every time I had to get up to use the restroom I was overcome with chills.  Sometime around 2 or 3 am, I started to get very hot.  I was pretty sure I had a fever, but didn't confirm it until around 6:00am when I finally dragged myself out of bed because I knew I was never going to go back to sleep.

My stomach hurt, I was nauseous and getting a migraine, so I medicated and laid on my bathroom floor in front of my space heater for a half-hour or so.  I'm pretty sure it was the most pathetic site, but I honestly didn't know what to do.  I knew that my urine output was drastically reduced, and combine that with the fever I had made me absolutely terrified.

Somehow, and I have no idea how other than sheer willpower, I made the drive to Mayo.  When I did my urinalysis, I got REALLY scared.  I had easily had over 40 ounces of water by that time, but I only peed about 3 or 4 ounces in the urine sample cup, and it was a strange orange color, like Tang.  I went up to plasmapheresis and told the nurses what was going on.  They took my vitals and showed that my fever had gone away (I had taken 2 Tylenol on the way to Mayo) but my blood pressure was really low and my heart rate was really high.  I just felt so out of it....so totally and completely awful. We decided to proceed with the plasmapheresis, where I was able to get a decent nap in.  I also called the kidney transplant team on call to let then know what was going on.

I made it through plasmapheresis without any ill effects, which was a little surprising since I hadn't eaten anything since around 4:00pm the previous day.  The nurses up there are pretty familiar with me by now, and they're wonderful.  They let me stay in the bed an extra hour after my session was over so I could rest before I went home.  In the meantime, the transplant team called and sent downstairs for more blood and urine tests.  Then the on-call nephrologist got a hold of the nurses in the lab and had me go up to the 10th floor for a physical examination.  It was all such a hassle, but I'm so glad that the doctor took the time to check me out.  She determined that I was dehydrated, and contemplated admitting me for fluids (which I totally didn't want to do).  Once she got the lab results back, she agreed that I could go home provided I pushed fluids the rest of the night (which I have been).  My potassium is high, so she told me to eat some salt to help remove it, and she gave me some sodium bicarbonate pills to take to restore the alkaline balance in my body as it's off right now.

Honestly, none of this is surprising with everything that's going on in my body. The odd thing is that my protein has dropped from 2499 to 450.  I'm not even going to both getting excited about it because it'll probably change tomorrow.  One thing I DID learn is that thyroglobulin can have the effect of making you feel like you have the flu, which is EXACTLY how I felt overnight.  I had thymol before in the hospital, but I was on such high doses of steroids (1000mg) that I didn't even feel a thing.  When I had it yesterday, I was only on 60mg of prednisone.  So I'm glad to know there was a relatively logical explanation for why I felt so absolutely crappy.  I'm also dealing with this upper respiratory thing that's making everything just a little bit more annoying.

#lifeaftertransplant is not for the faint of heart.

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.

23-days post-transplant

I thought my reality post-transplant would be different than it is.  There have been so many ups and downs, and I can't possibly keep track of them all, but I'm going to try to bring everyone up to speed.

First off, I'd like to say a huge "Thank You" to everyone that is still hanging out with me on this journey.  I know that a lot of you are looking for frequent updates because I'm usually pretty good at it, but everything that I've been through has definitely pulled the rug out from under me.  There has been several times that I wanted to write something, but I didn't think I could find a single positive thing to write about, and after awhile I just sound really depressing, so I stopped writing entirely.  I was also worried that Adam would somehow think that I didn't appreciate his amazing act.  Believe me, I do.  This is still SO MUCH BETTER THAN DIALYSIS.  I'm not sure if I'm a whole lot better off, but I figure it's time to dig my heels in again and keep moving forward, and getting it out of my mind and into this blog usually helps, so I figured I'd give it a shot.

Since October 29th, I've had the following tests/procedures:

• 21 blood tests
• 21 urine tests
• 1 kidney transplant
• 15 plasmapheresis treatments
• 2 IVIG infusions
• 3 thymoglobulin infusions
• 1 blood transfusions
• 1 kidney biopsy on my transplanted kidney

Yes, it's a lot.  Every day that I have a blood or urine test is fraught with fear and anxiety over what the results will be.  A bad result will wreck my entire day, and maybe the next day if I don't have another blood test scheduled for the following day.  And the longer this goes on, the harder it is to pull myself up by the bootstraps and look forward to what's next.

My FSGS is back.  It's mild so far, but it's definitely back.  When I came to Mayo, I was spilling over 40 grams of protein a day.  Right now, I'm spilling 2.5 grams, which is a HUGE improvement, but my brain can't get past the fact that I remember the course my disease took the last time, and it wasn't pretty.  Around 5-6 grams was when I started swelling severely......anyone that I worked closely with at Lilly will remember the days when I could hardly wear shoes.  I think about that, and I get so scared I can't even stand it.  And no one knows what course the disease will take this time, or how long it will take, and that unknown has stripped my spirit.  I've talked at length about how awful the state of limbo is for me, and guess what?  I'm right back in it.  I thought after transplant that I would at least have a significant period of time where I didn't have these worries, but I only really had 2 days before FSGS reared it's ugly head again.  I was totally robbed, and will spend the rest of this transplant worrying or wondering if the end is near.

On the plus side, my creatinine is 1.3 (pre-transplant it was near 18) and that's an amazing, which means that my new bean is handling all of the stress the rest of my body is putting on it with elegance, grace and determination.  I don't know how long it will last, but I'm incredibly thankful for it right now because it's the one source of hope.

I had a biopsy done on Tuesday, which was unplanned and honestly terrified me.  I got preliminary results and was able to speak with my doctor on Wednesday afternoon.  Great news is that my glomeruli (filters) look completely normal (i.e. unaffected yet by the FSGS).  This is great news because once the scarring starts, it can't be repaired, so we're definitely early in the game which means a better opportunity to reverse this.  The bad news is that the biopsy showed some mild rejection.  This isn't totally abnormal but it is something I'm worried about.  This might explain why, even after 15 plasmapheresis treatments, that my protein spillage is still above 2 grams.  All of those plasmapheresis treatments probably removed most of the thymoglobulin (IV anti-rejection medicine) that I received during and after the transplant.  The current plan is to increase my prednisone to 60mg for 3 days (I was at 15) and then slowly wean down again.  I'll do blood and urine labs tomorrow morning, then plasmapheresis, and then I'll do a thymoglobulin infusion after that.  That particular infusion is a longer one (~4 hours) so it sounds as though all of us are going to Rochester tomorrow.  We'll drive back home after that and spend the weekend here, and then Annika and I will go back to Rochester early Monday for more blood and urine labs, appointment with my PA (physician's assistant) and Dr. and then do another plasmapheresis treatment.  The hope is that the thymo will have a chance to work over the weekend, and combined with the plasmapheresis on Monday that we'll start to see my protein decrease.

That's the plan for now, but it can change at anytime.  I should get the EM (electron microscope) results of my biopsy tomorrow, so that may change things a bit.  We've hopefully checked out of the hotel for good, and will be able to drive down for the days where I have appointments.  My prograf level seems to be fairly stable right now, and the tremors aren't awful but it is difficult to do any handwriting at this time (which is why I'm such a fast typer...I had to compensate because my handwriting is dreadful on these drugs).  Don't be surprised if my Christmas cards seem completely impersonal because I'll be using pre-made address labels :)