Post-transplant update

I'd like to apologize for the complete radio silence from me, but it was necessary.  You spend 10 years  waiting for an event, and when that event doesn't go as planned, it stings.  I'm not going to be able to catch up on everything because, well, I'm tired and I just don't feel like I have the energy to dedicate to a post like that.  This blog deserves that, as do the people that take the time to read it.  I WILL catch up eventually, because my OCD nature will compel me to, but I'm not putting myself on a timeline.

I'm going to keep this pretty short.

My FSGS is back.

So now what?  The first few days we were just watching it, getting more data points to see the general trend which was up.  And then it would lower, and then it would go up again but not as high as the highest, so it was really hard to see where it would land.  This morning's blood work showed that my albumin/creatinine ratio had reached ~2700 which is pretty high.  My blood pressure has also been steadily rising...this morning it was around 145/93.  I was discharged from the hospital without blood pressure medications, but today's results change things.

So, this afternoon I started plasmapheresis treatments again.  I'll do 3 days in a row, and then every other day.  Plasmapheresis removes 70% of the antibodies in my system and replaces them with albumin.  So tomorrow, I'll have 70% fewer antibodies in my system, plus the new ones that my body is continually making, and we'll remove 70% of all that tomorrow.  Repeat on Wednesday, and then every other day.  It's not bad...kinda like dialysis but MUCH slower run rates which limits the feeling of vibration.  They also give me something to combat that vibration when it happens.  I just wish they did that same thing during dialysis because it's AMAZING how fast it works.

We're also adding blood pressure medication to the mix, starting with a rather low dose of Losartan (Cozaar) twice a day.  My prograf trough level dropped from yesterday's 4.2 to 4.0, and we want it somewhere between 8-10, so my doctor raised it to 6mg 2x/day.

I met with the in-clinic nephrologist today to review my labs and check out my incision to see how it's healing.  He was great..patient, listened.  I then met with the social worker because I have specific Medicare questions that need to get answered because our open enrollment with Joacim's work ends next Wednesday.  Joacim and Izzy stayed an extra night so he could be there for the conversation.  They left right after that, which makes me sad, but Izzy was so happy to go back to school and be home!!!

So the plan is to take it day by day and see how it goes.  My doctor's are still very happy with Adam's kidney....it's handling the stress remarkably well.  My creatinine is 1.4, and my doctor said anything between 1.5 and 2.0 is great, so that was a bit of a relief.  I tell you, that's basically the only reason I'm not utterly freaking out.  The changes we're making are good ones.  I, of course, will do whatever they tell me to do, but I'm REALLY happy that we started plasmapheresis today.  Tomorrow morning's lab results may not show any difference.  In fact, my protein may creep up a little bit more because (oversharing here) I had awful diarrhea today.  That can happen with Cellcept, so not totally unexpected, but not pleasant at all.  I swear I'm drinking as much water as I feel possible, but it still may not have been enough today.  We'll see.

Just want to end this post with a quick picture of my new meds.  That's 36 pills a day my friends.

Rough few days....

I feel pretty rough right now.  The last few days have been a struggle for me, physically.  I'm still riding my high, but days like I've had recently ground me quickly.

I've spent a stupid amount of time the last 3 days sitting.  Sitting in meetings. Sitting in my car.  Sitting in my desk.  Sitting at lunch.  This job seems to entail a LOT of sitting, and it's killing me, literally.  Days like these I gain wait.  I feel sluggish.  I feel awful.

I've been struggling with diarrhea (tmi, I know, but deal with it), so that's no picnic.  All of the swelling is limiting my range of motion, and I'm cramping a hell of a lot.  I had one in a meeting yesterday, and it took everything in my will to not cry.  I'm tired of putting on a good face at work.

I went to yoga, FINALLY, tonight. This was the first night that I thought I could actually make i though the class.  I did, but just barely.  There's such  drastic difference between when I go to yoga in the morning and when I go after work.  In the morning, I'm full of energy, an feel graceful and beautiful and strong.  In the evening after a long day at work, I feel like an elephant crammed into spandex doing yoga on a balance beam.  It's not pretty.

I got home, took a shower, and this overwhelming exhaustion game over me. I even asked Joacim to brush my teeth for me, but he didn't take me up on it.  Then I started to feel REALLY bad.   My blood pressure is okay, but my heart rate is up around 100, resting, and it's normally around 70 (not much better :(.  My heart rate freaks me out, especially when I compare it to Adam's.

His lowest measurement was 37bpm.  Holy hell, that's awesome.  Granted, he nearly rode enough miles on his bike during the month of June to go to New Orleans, but still :)

I have such an uphill climb to get to where I want to be physically, and it's daunting.  I can tell that this is getting harder.  My sleep is not as great as it was in the beginning, and it's getting REALLY hard to wake up, even though I'm in this bed 9.5 hours a day.  I have no idea how much is enough sleep, as I haven't reached that point yet.

My first hospital stay....: FSGS Sucks

Last Sunday my friends came over so we could make Christmas candies and cookies.  It was a fun day, and LOTS of food was made.  I thought it was odd (for me at least) that I didn't feel like snacking at all throughout the day.  My stomach was a bit upset, but I just figured it wold pass.  I had plans to go to North Dakota on Monday morning with my boss and co-worker..around 9:30pm I confirmed things and went to bed.  About a half hour later, I started having diarrhea, and then a half hour after that I started vomiting.  Profusely.  At the same time.

I can honestly say that I've NEVER EVER felt that horrible.  EVER.  I was nervous about how this would affect  my blood thinner medication, since I had most likely thrown it up.  That, coupled with the fear of dehydration, made me drive myself to the emergency room, and I'm so glad I did.  I have no idea how I made it there, but they were kind enough to bypass the formalities at the desk and let me take a shortcut to a bathroom and a room.  I feel so sorry for the poor sap who had to collect my stool sample in there.  It wasn't pretty :)

I think I shit 4 times before they got my blood pressure, and vomited at least once.  The first 24 hours were all a bit hazy...but since I'm ALWAYS thinking about fodder for the blog, I managed to take a few pics of my stay.

This is me once I got a bit settled in the ER, along with some Zofran for the nausea.

I threw up so hard that I had petechia around both eyes...

The attending physician was a bit worried about me being dehydrated since the vomiting and diarrhea weren't stopping, so he thought it best if I were admitted.  He asked me what hospital I wanted to be transported to (because the place I went is not a hospital, but an emergency room only), and I had absolutely no idea, so I guess that means I need to do some research now in case this happens again.  I went to St. Francis in Shakopee, and I gotta say that they were absolutely GREAT!

This was my 2nd IV....the ER had placed on in the crook of my arm, and it wasn't comfortable at all, so they moved it to my hand.  This totally creeps me out, btw....I was so dehydrated that my veins started collapsing when they tried to draw blood.

This picture I took on day 2...petechiae still there...

FINALLY, after 24 hours, the diarrhea stopped, but then I started to get a headache.  They were generous with IV pain meds, but it kept coming back again and again.  And then I started vomiting again.  Even this little cracker here cause me quite a bit of discomfort.

And then, of course, I had an itching spell when I was trying to sleep, so they got me some ice packs to  numb my arm.

After 4 bags of fluid, my face started to swell.  You can see how my eyelids are starting to get puffy.

They had to move the IV AGAIN in order to do some albumin infusions .  I'm so grateful to the nephrologist on staff there who ordered the infusions.  It's something I've asked about more times than I can count, so it was nice to have a nephrologist who was willing.

Izzy and Joacim came for a short visit on Tuesday night.  The nurse had given me a percocet in order to kill the pain, and she warned me to eat something with it, but I was SO nauseous.  I wish I would've listened, because within 10 minutes of them arriving, I had to throw up.  I was afraid that it would freak Izzy out, but she handled it quite well, and I felt fine after that.  Clearly she was fine since she decided to steal my apple :)

And then she made herself comfy in my bed and we watched Rudolph the Red Nosed Reindeer on TV.

Sadly, after they left, the headache came right back with a vengeance.  At this point, it was a migraine and I was miserable.  I had a WONDERFUL nurse, though, and she gave me a lavender inhaler, put some oil on my back and gave me a pressure-point massage, which felt AMAZING.  She was a fantastic nurse, and her name was Carole.

Finally, by Wednesday morning, I had the headache under control.  The doctor on staff had given  me migraine medication the previous evening, and gave me some to take home until I get into see my PCP.  I felt MUCH better....tired, but better, but my face was ENORMOUS!

Can you see the swelling UNDER my eyes?

How about now?  :)

It took 3 days for my face to return to "normal", but I'm VERY happy that I decided to go to the hospital.  I know that I can't be too careful when it comes to my defective beans, and that I should trust my gut when it comes to how I feel.

I'm a bit nervous as to what my boss thinks about it all, since I had to text him at 2:18am on Monday morning to tell him that I wasn't going to North Dakota.  At this point, I think it's time to tell him what's going on.  I no longer have the confidence that I can "power through" things every time....things like this are going to continue to happen, and possibly more frequently, so I think it's only fair, for both he and I, that people know the status of my health.  Wish me luck!