113 days post-transplant update

How do I begin to cover everything that’s happened since my last post?  I know that I'm going to regret terribly the fact that I haven't been blogging frequently throughout this period of my life, but I just need a break.  It's funny that I think of blog posts in my head all of the time, I'm just too tired to sit in front of the computer and put my thoughts into words.

Today, I'm 113 days post-transplant.  I wanted to do a post at 100 days, but that was the first day of normal after a 3-day migrant so I just didn't.  My last post at the end of January was right when I got the second dose of Rituximab and we were going to take a break from plasmapheresis to see if the drug worked.  It was a nice break....a MUCH needed break.  I did labs locally, and as expected, they couldn't do them correctly.  I did it 3 times at my local clinic, and my protein came back at 7352, then 920 2 days later, and then back to 4587.  Needless to say, all of that variability gave us nothing useful to go on, and the experiment turned out exactly as I had suspected.

So, I went back to Mayo on Friday, Feb 5 for a follow-up and labs with my doctor.  My blood pressure was creeping up again and I was having some discomfort around the kidney.  I swore I had another fluid pocked, so my doctor ordered another ultrasound.  Luckily it came back ok (meaning no fluid pocket), but it put even more doubts into my mind about my own body and my ability to recognize when something was off.

My protein that day was up to 7314, so we decided to start back up with plasmapheresis that day, and we were going to be intensive about it.  I did it Friday, Saturday, Sunday, Monday, Wednesday and Friday.  I took a break over the weekend (thankfully) but went back on Monday for more PP and also some IVIG.  This time he increased my dose 3-fold, but kept the infusion time the same.  IVIG infusions start slow, and they do frequent vitals checks and then start increasing the flow rate, but it didn't go so well for me that day.  Within the first hour my bp shot up to over 180/100.  We slowed it down, got me a couple more bp meds and then restarted but didn't speed up the rate this time.  This made a 3 hour infusion take 7 hours.  I left my house that morning at 5:00am, and didn't get home until 9:30pm, and I had to drive in a windy snowstorm on the way home.

When I got home, my migraine hit.  And it was intense.  I stayed in bed the entire day that Tuesday..didn't eat anything and definitely didn't drink enough.  The Imitrex wasn't even touching this one, and eventually I ended up throwing up.  I didn't feel much better after that like I usually do, so I just took a bunch of meds to try to help me sleep.  I had PP that Wednesday, and I had to have Joacim drive me this time because I just didn't think I could do it.  I had lost a lot of weight over those couple of days and was pretty dehydrated, so they gave me a bag of saline during PP to help out.  As you can tell, things have generally sucked.  A lot.

I'm dealing with a shit-ton of anxiety right now, and it's manifesting into heart palpitations.  I don't know if any of you have ever had them, but its truly awful.  I feel as though everyone in the room can hear my heartbeat.  Like if you set a bunch of glasses of water around me on a wood floor, you'd see my heartbeat in the glasses of water.  And the worst thing is that they happen at night.  So I lie there in bed, feeling like I'm going to die of a heart attack before this kidney thing takes me.  It's even worse on my left side (and of course I'm a left-sided sleeper) so I lie on my back and ponder the state of my life, which adds even more anxiety.  I find myself googling all sorts of awful things to explain the palpitations, like congestive heart failure and lovely things like that.  Google is my best friend and worst enemy.

I have discovered, however, that if I take my Xanax at 8:00pm with my evening meds, then I'm pretty drowsy by 9:00 when I turn in, and the palpitations are not nearly as bad.  I would usually take my Xanax right when I went to bed, but it clearly needs a little more time to work than I was giving it.  It's working for now...hopefully that continues.

I tried to do some yoga the other day, but I clearly overdid it because the incision area hurt the rest of the night.  And this wasn't a tiny twinge of pain but pretty intense.  It was much better by the next morning, but made me realize how truly fragile my body is right now.

I'm taking keyexalate to help pull more potassium out of my body.  I currently have hyperkalemia (elevated potassium) which effects the functioning of the heart muscles.  One of my bp meds makes the body hold on to more potassium, so in order for me to take that bp med (which is one of the better ones for me to take) I needed to reduce the potassium.  I've been working on it with diet, but I need a little more help.  The probably with this medicine is that it can sometimes induce H.O.R.R.I.B.L.E cramps and diarrhea (yippee....) so timing of the medicine is an issue for me right now.  And I can't imagine how in the hell I'm supposed to manage this, along with everything else, and go back to work.

Speaking of work, I found out a couple of weeks ago that the position I had when I left has been discontinued and now they're creating new ones.  I'd have to apply for this job, but the only way I can do that is if I terminate my leave (which I'm clearly incapable of doing right now) so my company is going to post a job and hire someone.  They say they'll have an equivalent position for me whenever I return, and no doubt they will because legally they have to, but it doesn't have to be a position that I'd actually want to do.  So, another spec of shitty news.

My employer's long term disability company (Prudential) is questioning whether or not I’m actually ready to come back to work.  Back in December I had been working really hard to start walking, and was trying to walk a 1/2 hour to an hour a day.  Some days I was up to 3 miles, and my doctor noted that in his notes.  To both he and I, this was a good sign.  To Prudential, it is apparently the equivalent of "okay to return to work".  Ummmm....if my job was solely doing nothing but walking 3 miles a day then I might understand it, but clearly that's not it.  How in the HELL would I return to work when I spend so much time at Mayo still?  I mean, is ANYONE thinking here?  And I just found out that they're trying to make this decisions on my future based off of doctor's notes from December.  They've never reached out for current notations (which is dumb..honestly...should I have to be the one to tell them to get updated notes??????).  Fuck, this frustrates me to no end.  I'm terrified that they're going to force me to go back to work.  I can't handle it. I'll fail, and then I'll get sick, and this will all be for nothing.

I feel, by far, more week and pathetic now than I ever have in my life. 

I’m battling what feels like depression.

My labs are getting more awful now…protein up over 8700…it might be higher but the range for the lab only goes so far.

So now what do we do?  What other tricks have we got up our sleeves?  Well, there really is only one at this point, and my doctor is trying to convince himself that it’s worth the risks.  There was a paper published in the NEJM (New England Journal of Medicine) in 2013 that talked about a drug called belatacept.

I’ve had a LOT of things done since transplant…a lot of medications, all with some inherent risks.  Adding another heavy-duty immunosuppressive adds even more risk to my already fragile state, and there isn’t a lot of evidence that it works.  That’s the thing about my disease, and I’ve mentioned this plenty of times before, but most of the papers that are written and published use REALLY small sample sizes….nothing that is statistically significant.  And this disease is probably not just one disease, but most likely a host of diseases, so there’s just no way of knowing whether it will work or not unless we try it.  I’ve watched my doctor closely over these last few months, and it’s made me realize that nephrology is a combination of science, art, and whole lot of hypothesizing and experimentation.  I’m sure it’s that way with a lot of other disciplines, particularly transplants, but it’s still cool to watch the method behind the madness unfold (unless you’re in my shoes and none of the art, science, hypothesizing or experimentation works to kick your disease to the curb).

So now we’ve got to decide whether the risks are worth it.  As a patient, it’s hard to imagine not trying something that might have a chance of working at this point.  I mean, I’ve tried everything else.  The thing that stops me is that I’m just so tired of feeling so awful all of the time.  It would be so nice to have a break from all of this…to gain some strength back, lose this catheter and just pretend that I’m okay for a little bit.  To go swimming, sit in a hot tub, take a freaking NORMAL shower.

But there are risks from stopping everything and just letting nature take it’s course.  If we were to stop plasmapheresis right now, my albumin would drop within days and I’d swell up like a ballon.  Albumin is the magical stuff that keeps me from severe edema like this:

When I’m doing PP,  my albumin is within range, my weight is stable, there’s no swelling in my lower extremities or my back.  The negatives about PP is this chest catheter that I’m still sporting, and the effects of the calcium depletion that occurs for me.  It’s a feeling of tingling that starts at my nose and spreads across my face, sometimes moving to my chest.  My head feels like I have an instant sinus infection (no mucous, just the swelling) and my eyeballs are all wonky.

We're going to try to wean down PP to 2 times per week to see if the swelling stays in check and the albumin remains stable.  I think I need to start giving myself EPO injections at home again because the exhaustion is overwhelming.  Fuck, I just want some good news.  Something worthy of a celebratory dinner or something.  Is that too much to ask after all of this????

I'm sure there's probably more to say, but I have to get up early for PP at Mayo tomorrow, and I'm just beat right now.  I'll try to get better about post frequency as I know some people are actually reading this, although not nearly as many as were reading it when I was going through the transplant which saddens me.  

Another Rituximab infusion today

The last time I posted was just after I had gotten some bad lab results regarding my protein spillage.  Since then I've pulled myself out of my little hole again.  I'm getting good at doing this lately because, well, I get a shit-ton of bad news lately it seems.

I did plasmapheresis 2 more times last week and was a little wiped out going in to the weekend.  I had been experiencing a lot of pressure in my upper torso (which I've written about a gazillion times), but on Sunday, it all went away.  And my blood pressure finally started dropping.  It just felt incredible.  That feeling of fullness or pressure is absolutely miserable...wouldn't want to wish it on anyone, but it's clearly blood pressure related.  It's so hard to be patient waiting for meds to work because I've gotten very used to quick results..not always the ones I want, but they're quick.  Blood pressure meds are a different beast and can take a few weeks for the full effect (at least that's how it is for me...I'm no doctor....I'm just relating my experience).

I went to Mayo again on Monday to have labs done and plasmapheresis.  The plasmapheresis was uneventful, but the labs weren't and I got crappy results in regards to my protein again:

One day it's up, then it's down, and then it's up again.  It's been INCREDIBLY frustrating because it really feels like there's no scientific rhyme or reason to the change, but what's worse is that, when you look at the graph, you can see that the overall trend is increasing, and that's not good news for this kidney in the long run.   So, we're going to try Rituximab again.  I had a dose of it 3 weeks ago, but we started doing plasmapheresis rather aggressively right after it, and my doctor thinks there's a chance that some of it was removed through the plasmapheresis.  So THIS time, we're going to do a Rituximab infusion and STOP plasmasphersis for a week or so to see what happens.  I actually was at Mayo this morning for the infusion and I didn't experience a reaction this time because I received IV Solumedrol (steroids).  Steroids are amazing (yay, no reaction) and awful (book...EXTREMELY HIGH BLOOD PRESSURE RIGHT NOW) at the same time, so its important to use them cautiously. Even though my BP is through the roof right now, I'm still glad we used it because the reaction I experience is awful and scary.  The bad effects will wear off quickly and hopefully my bp will drop tomorrow.

We also are trying to wean off of the amlodipine due to the fluid retention issues I have with it, so now I'll be taking a half-dose of it in the evening, and adding a new med called Tenex.  The side effects of the Tenex are sleepiness (so I'll be taking it at night), dry mouth and depression.  I'm at a low dose so I don't anticipate any problems, but at least I know what to look for.

I'll do labs on Friday and Monday locally, which will be a first since transplant.  It makes me terribly nervous to do them locally because I KNOW that they're done right when I go to Mayo, and my doctor can see them easily and instantly.  When I have them done here locally, they aren't always processed correctly, and sometimes they don't even run the right tests.  Then the results are faxed to my doctor, and they aren't in the medical system in the same way, which means I won't be able to see them on my Mayo app on my phone (which is one of the most incredible apps I've used, btw), so there are delays built in already.  Fuck, I actually hate doing them locally, but it makes no sense to drive 4 hours for labs.  And I've got to get used to doing them locally, and getting all of the kinks worked out for my long-term sanity.

I had a pretty frank discussion with my doctor today about long-term issues.  Have I mentioned how great my doctor is?  I mean, he knows I'm an engineer and we got into a discussion about fluid mechanics in the kidney.  Nerdy, yes..but awesome.  Anyway, I'm concerned about long-term implications with the high potassium, fluid retention and protein spillage but mostly I'm worried about the day my doctor gives up, and I told him that.  And I'm happy to say that he won't give up on this kidney, even though we both know that 6 grams of protein spillage means a much shorter kidney life than either of us hoped for.  Anything we can do to lower protein loss is a win and that's what we're going to focus on with the Rituximab and the break in plasmapheresis.  Some of the meds I'm taking increase potassium, but those doses will either lower or go away entirely in the next 3 months. The fluid retention is directly related to the protein loss, and thankful the Lasix is keeping it in check for now.

I was REALLY down last week.  I'm being totally honest when I say that there isn't a single minute that I'm awake where I'm not thinking about this kidney, and it consumes me sometimes.  I'm a terrible wife, mom and friend right now, but I'm a great patient, and I guess I have to be OK with that right now, knowing it's not for forever.

I forgot about the Rituximab

In my haste during yesterday's post, I totally forgot to mention that I had another Rituximab infusion last Wednesday.  Remember, there are 2 problems we're working on right now:  high blood pressure and proteinuria.  Lowering the blood pressure should help with the proteinuria, but it won't completely solve it, so my doctor decided to do another Rituximab infusion.  

This is the same drug that I had 2 infusions of last summer prior to transplant to get my body ready for transplant.  It is a chemotherapy drug.  I was much healthier last summer when I took it than I am now, and I can tell a difference in how I feel.  I am COMPLETELY wiped out.  I'm tired of being so damn boring and seeing the inside walls of this house, but I don't have much energy for anything else.   I believe that the blood tests I'll do on Monday will include measuring the amount of B-cells I have, as the intent of this drug is to wipe out all of my B-cells to help reduce the proteinuria. 

I tried to get some cleaning up done this morning, but then spent 2 hours on the sofa watching people build stupid tiny homes so I could recover.  I don't remember Rituximab affecting me all that much last year, but I do believe it's because of everything I've endured the last couple of months.

Tonight was the first night in 4 nights that we had Izzy back all to ourselves. and I really wanted to go out to dinner.....you know, do something different, but by 4 o'clock I was ready for bed.  Luckily, Joacim gave me little pep talk, I put some clothes on and forced myself out of the house so we could 

take Izzy to get a cheeseburger :)  We're back home now and I have no intentions of leaving the house again as I can hardly lift my arms :)

Another problem we're working on is my high blood pressure.  I wrote yesterday that we changed my blood pressure medicine from Losartan to amlodipine, and we did that last Wednesday.  We also added labetalol to the mix to help lower it.  And since then I've just been feeling really awful.  I wanted to attribute it to the surgery recovery, but it's different.  It's hard to describe, but I feel very full again around my torso, and my legs are swelling.  My eyeballs are doing their wackadoodle thing that they do sometimes, and I'm so out of breath that it's making me nuts.  After looking at the side effects of amlodipine, I believe it to be the culprit of my misery, and it's something that I'll address with my doctor on Monday when I see him again.

Mayo update and dialysis change

I had a follow-up appointment at Mayo yesterday to draw labs.  The original plan was to wait 30 days after the 2nd infusion, but I guess this is where it pays to be an "interesting patient"...it leaves doctor's curious and anxious to see labs :)  I also got a chance to see the doctor again which was great.  All of my labs hasn't been processed in time for my afternoon appointment (specifically my B cells which we're hoping are at 0), but we did get to see some of them, and those weren't all that great.  My albumin is steady at 2.6 (which is great for me) but it's unchanged from the last draw, and I got the feeling that he expected it to be higher.  We talked again about how PD wasn't the best option for someone like me with low albumin, but he completely understands why I chose it and he doesn't intend to change it (whew!).  My creatinine is also quite high at 16.7, up from 13.7 a month ago.  And my hemoglobin is at 9.5 (down from 10.3).  And my BUN is at 70.  Even though the numbers aren't very good, we did set a tentative transplant date of November 3rd.  I had been hoping for October 15, because that's the stat of fall break here in Minnesota, but the doctor is set on 3 months after the first infusion.  The date of November 3rd worked out quite well for me, actually, as it will be exactly 1 year that I've been on dialysis.  What a great anniversary gift...a NEW KIDNEY!!!!!!

I've been on Short Term Disability for a little over a week now, and I'm really glad I did it.  I've been able to go to yoga regularly, start cooking more meals and checking things off my list.  But what I can't explain is the exhaustion I've been feeling. I've been trying to keep on a fairly regular schedule since I started, going to bed at the same time as Joacim and Izzy and getting up "early" in the morning.  I've been getting enough hours of sleep, working out and eating better, and yet I'm still exhausted.  I've been feeling crappy lately, very reminiscent of how I felt before I started dialysis.  My muscles never seem to recover from their workouts, and my brain is foggier than normal.

I had my monthly appointment with my dialysis nephrologist today and we talked about my numbers.  My Mayo doctor had actually called her yesterday (which I think is awesome) and were able to talk about me and put a game plan together to get/keep me as healthy as possible for transplant.  The numbers that I'm working with right now are terrible...my dialysis nephrologist said that it's as if I'm not even doing dialysis right now, and that totally explains why i've been feeling so crappy.  My urine output has drastically declined, and I think it will always surprise me how much of an impact that has.

All of this has led to a change in my PD "prescription".  Instead of 4 cycles totally 6600 ml of solution used, my new program will have 5 cycles for a total of 11,000ml of solution, so my fills have gone from ~1600mL to 2000mL.  That might not seem like a lot, but I'm in my first dwell right now of the new program, and it's REALLY hard to breathe.  I mean...I'm like a beached whale stuffed in a straightjacket.  This new program will also require me to change from 5L bags that I typically use to 6L bags (which I didn't even know they made ;).  Until my new shipment arrives next Thursday, I'll use 3 bags each night to get through, which will also help me reduce the supply I have in the basement.  These changes, although uncomfortable, should immediately start helping the toxin removal, which will make me feel a whole lot better.  I have my next adequacy test next Monday to see if it's working.  Here's my new 3-bag setup:

And I just checked my labs at Mayo and B cells are zero!!!!!

WOOOHOOOOOOOO!  That EXACTLY what we want to see!!!!  Great news!!!!  That makes me feel MUCH better!!!!  Okay, I'm off to see if this beached whale can get some sleep. :)

2nd dose of Rituximab

I had my 2nd (and hopefully last) dose of Rituximab last Wednesday.  It was a wonderfully uneventful infusion.  So unremarkable was it that Joacim and I slept through the entire thing.  I think I only have 1 photo from the entire day, and it was taken by Joacim after I was already done.

We originally thought that I would have lab done right before the infusion (you know...to see if it's working) but the nurse got a hold of Tammy (recipient coordinator) and told us that we'd do labs 30 days after the 2nd infusion.  It was a little bit of a bummer because I really want to know if it's working, but it wasn't to be that particular day.

I did, however, talk to Tammy the next day, and the transplant nephrologist is ALSO pretty keen to know if it's working, so he went ahead and scheduled a visit for the 25th of August.  We'll do bloodwork then, and a short visit, and if my B-cells are trending down like we hope (indicating that the Rituximab is working) then we can tentatively schedule a DATE FOR TRANSPLANT!!!!

YIPPEE!!!!!

More good news in that I officially started short term disability today.  Even after all of this time waiting, I was starting to feel like the transplant date was hurdling toward me, and I just didn't feel that I could get everything done that I wanted to get done before the transplant.  Things like making a will, and meeting with my financial advisor, and a lot of other crap like that takes a LOT of time, and I didn't have much of that to spare working full-time, mothering, wife-ing and dialyzing, so I decided it was in my best interest to stop working.

It wasn't exactly an easy decision to come to.  My friend, Holly, blames it on our midwestern work ethic (work unless you're dying) and she's probably on to something there.  It's not easy to admit that, even though I can physically do it, I'm not doing it very well.  I've always worked.  The only other times I haven't worked since college was maternity leave and an intermittent leave I took when my swelling was at it's worst.  Even through prednisone, I continued to work.

But not this time.  I'm going to use this time to get my house in order (physically and metaphorically).  I'd like to do some fun things with Izzy before school starts in a couple of weeks, and I want to get on a regular yoga schedule because it's still truly the only place I feel amazing.  I went during lunch today, and it was great to get back in class and sweat.  The hardest thing for me is to try to keep on some sort of a schedule.  I'm a night-owl by nature, and it's very tempting for me to stay up until all hours of the night enjoying the quiet, but then that would mean that I would sleep in too late and not get anything accomplished.

I see this transplant as a fresh, new start, but there's still a LOT of work to get done before then.

1st dose of Ritixumab

The process has OFFICIALLY started!!!  Yesterday, I went to Mayo to have my first dose of Rituximab.  We left the house at 5:00am (which was PAINFUL) but made it to Mayo at 7:00am for labs.  See how happy we are to be awake?

After labs, we went to Mac's to eat breakfast (of course).  Once we were done, we had an hour or so before the infusion started, so we walked around to some of the nearby hotels to start to narrow down where we'll stay for the transplant.  We weren't able to see the Gift of Life Transplant house because we didn't have an appointment, but we'll make sure to set it up for the next time.  All-in-all, I was pleasantly surprised by the nearby accommodations, and the prices were high but not awful.

My infusion was on the 8th floor of the Eisenberg building, which is a very nice, relatively new (or remodeled) area.  I had a private room with a bed which is great for a longer infusion.  They gave me Tylenol and Benadryl when I got there, and we had to wait a 1/2 hour to let the meds kick in.  There was also a 100mg dose of IV prednisone that came with the Rituximab, which is used to essentially shock the immune system in order to allow the Rituximab to work.

The infusion starts off very slowly with only 50ml/hour, slowly increasing over time to 400ml/hr.  Initially, there are blood pressure checks every 15 minutes to ensure I'm not having any negative reactions to the meds, then once every 1/2 hour after.  Each blood pressure check would increase the flow rate, and that's the info that's on the board in this picture.

Benadryl is awesome.  It makes me SO sleepy.

Joacim stayed in the room with me for awhile, but he got bored eventually so I asked him to go get me some food. I wanted Dunkin Donuts, but they were sold out, so he came back bearing a Cinnabon.  I wasn't horribly disappointed ;)

Neither was he when he got to eat the leftovers :)

All-in-all, it was pretty uneventful.  About an hour-and-a-half in, I started to experience a sore, scratchy throat, but it was fine by the time the infusion was over.  We headed home after it was done....what a LONG day!  The most exciting thing out the infusion was that I couldn't do dialysis last night.  A night of FREEDOM!!!!!

Unfortunately, I kinda need dialysis for fluid balance.  I pee very little now...about 800-1000ml compared to 3200ml+ previously, so most of the fluid I took in yesterday stayed in, and I went to bed pretty full.  I woke up with a pretty wicked headache this morning, so I got up to get some Tylenol, and I noticed that my face was swollen.

So I went back to bed.  Fucking hate a swollen face.  The same thing happened when I received a cortisone shot last year for my hip.  What I hate is how swollen the bridge of my nose gets...it's just strange.  It's mostly gone now, but my face still feels warm and is flushed.  I'm sure by tomorrow morning it'll all be gone (the swelling, that is).

I have another infusion scheduled for 2 weeks from now, and we'll also measure my b-cells to see if there's been an response.  My albumin is still on the rise (yay!) which means more of the drug will be staying in  my system.  I've begun the process to go on short term disability, so hopefully that'll start in the next week or so.  I really need some time before the transplant to rest and focus on being healthy.

Kidney by Halloween!!!!

I had a very early blood draw at Mayo this morning (7:30am), so I had to leave the house at 5:30am, which means I went to bed at 7:30pm last night ;)  Even arriving at 7:20am, I ran into a line getting into the parking garage!

After my blood draw, I headed straight to Mac's Restaurant to get some sustenance (i.e. coffee and omelet).  After breakfast, I sat outside for awhile, but I was so sleepy, so headed up to my familiar spot on the 19th floor of the Mayo building to hang out and wait for Joacim to meet me.  He drove separately because Izzy had an orthodontic appointment this morning to get her spacer fitted, and hell hath no fury like that of the ortho clinic when you try to reschedule!

When I got upstairs, I first sat in my normal spot, but the sun was so intense and hot that I had to move.  On one end of the 19th floor of the Mayo building is Nephrology, and the other end is the Cancer research center (I thin).  Anyway, it's pretty quiet over there usually, but today was a bit of an exception, as I got to watch the window washers.

I'm pretty sure it's mirrored glass and they could't see me, but I still felt so guilty sticking the phone in their face that I abandoned those pictures :)  I hung out up here, answered some emails, watched some Hulu and HBO (thanks Rebecca!) and waited.  Joacim made it to Rochester around noon, and we headed over to Mac's (again...it's THAT good) and shared a gyros platter.  I sent a picture to Adam to make him a bit jealous of all the fun I was having ;)

We then headed over to the transplant center and waited.  I took this picture because I think it's funny that Joacim and I inadvertently dress like each other sometimes.  We both had on white v-neck t-shirts, dark gray/black pants, and dark gray/black shoes.  TWINSIES!!!  Funny that it happens once, but this seems to be a frequent occurrence ;)

I started to get SO nervous before my appointment, just imagining all of the bad news I was going to get.  But you know what?  It was GREAT news!!!!!

This is the drawing that the nephrologist made, and I took a picture to help me remember everything. He did such an incredible job of explaining the game plan, and made sure that Joacim and I understood everything.  He was happy that I had done some research and came with questions.  And he had a hilarous sense of humor!  I feel like I'm in great hands!!

So, my albumin has come up a bit more (2.5) and the trend is definitely improving.  We talked about how PD is not ideal for someone with low albumin, but he doesn't want to change anything in regards to that.  There was some initial talk about clipping my ureters but he decided that wouldn't be necessary after reviewing my labs!!!!  We can go forward with Rituximab....soon!!  He's going to work with my transplant coordinator to ensure insurance coverage (no, I'm still not on Medicare), but it shouldn't be a problem.

I'll have my B-cell level tested prior to the first infusion (same day) to measure effectiveness of the Rituximab.  The first infusion could take up to 6 hours because they want to go fairly slow to prevent any sort of a reaction. There's a bolus of steroids involved in this, which sucks, but not enough for me to complain anymore about it :)  Then we'll wait 2 weeks, measure my b-cell level again, and do the 2nd infusion. Then we'll have 8-10 weeks (maybe a little longer) to ensure all of the b-cells are gone and then TRANSPLANT!!!  I'll probably do 4 plasmapheresis treatments prior to transplant (the 4 days prior) just to be super-sure I'm cleaned out.

These are the details as I know them today.  I'm not sure when the first infusion will be, but he said it could be as soon as this Friday...it will depend on scheduling and insurance, but things are looking really good!

I was SO excited to call Adam with the great news, and some semblance of a plan!  This is freaking GREAT NEWS everyone!!!!!

Approved for kidney transplant at Mayo!!!!!

I GOT THE CALL!!!!

This felt like THE LONGEST day.  I don't think I've ever checked my cellphone so many times...checking for missed calls, voicemails or emails....anything!  It wasn't until 4:30pm that my transplant coordinator called and told me the great, amazing, fantastic news.

They spoke at some length about me today, which is good because it indicates thoroughness to me.  They are going to list me inactive on the transplant list.  If you remember, the U listed me inactive too, but in case you don't remember, being inactive means that I won't be getting any calls offering up a cadaver kidney for me, but I will continue to accrue time on the list.

The team is being very purposeful in this decision.  Because of my FSGS, there is a protocol that they want to follow to ensure the best outcome for me.  Before the transplant, I will be given doses of Rituximab, as well as several sessions of plasmapheresis.  The way I understand it, the Rituximab is used to "remove the antibodies" and the plasmapheresis is used to clean my blood.  Hopefully, by doing this, I'll be less likely to reject the donor organ.   If I were to get a cadaver kidney, we wouldn't be able to do this, which is why I'm inactive.

So now what, you ask?

Well, the answer is simple.  I need to find a living donor.  Joacim is still working on lowering his a1c with diet and exercise, which is awesome, but there's still a risk that, for some unknown reason, he won't be able to donate via the paired exchange program, so I need more living donor candidates.  Several more.  A living donor will save me 5-7 years of possible waiting for a cadaver, and even then, it would be dicey.  A living donor gives me the ABSOLUTE BEST chances of a successful transplant.

I know lots of people read this blog, so I'm hoping this will help me in my search.  I feel that I need to at least say something before I go into the whole donation process.  This is hard for me.  Awful, in fact.  It's uncomfortable in a way that I can't describe.  Putting myself out there, asking for a kidney....just makes me feel more vulnerable than I ever have in my life.  I'm relying on someone to come through for me, and that's hard to get my head around.  But I also want to say that I'm not looking at everyone I know and thinking, "Well, why doesn't he/she step up for me?".  It's absolutely not like that.  I know that people have circumstances that may not allow them to step up, even though they want to.  I totally get it.  My mission is to find the best donor for me, and hopefully that person doesn't go into this with one shred of doubt, because that would be a bad situation for everyone.  I am going to do my best to provide the most accurate information out there for people to consider, and then hope that someday soon, I'll get the call that says I have a donor.

This post has already gotten long, so I think I'll do another post on the donation process/criteria.  Just want to say "Thank You" to everyone that has sent me words of encouragement, or just little messages/texts to let me know that they're thinking about me/reading my posts, etc.  It means more than you know....