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.

Feeling defeated tonight.

My albumin/creatinine ratio today had risen from 3159mg/g on Friday to 5986mg/g this morning.  That's nearly double in 3 days.  And for the LIFE of me, I can't come to any reasonable conclusions as to why.  I was on such a good, DOWNWARD trend up until today.

I haven't spoken to my doctor yet about these results, so understand that everything I'm writing is my own brain coming to it's own worst conclusions.  So last Friday, we changed up my amlodipine to stop taking it in the morning, yet continue with the 5mg dose in the evenings, which I've done since Saturday morning's dose.  I did notice, over the weekend, that I was feeling less and less good.  I was retaining more and more fluid, my weight was increasing as well as my blood pressure.  I explained away the blood pressure by the amlodipine dose change.   I understand that these things can sometimes take a few days to level out, so I didn't want to freak out too much.  By Sunday, I could REALLY tell that my blood pressure was high again, and sure enough it was 160/97 Sunday evening (which is terrible, for anyone that doesn't know that).  I had easily gained 2-2.5 kilos since Friday as well, and I was feeling every single one of those, with seemingly all of the fluid accumulating around my ribcage and my eyes.  Fuck, it just feels truly awful.

My bp readings during plasmapheresis were high today as well (not as high as at home, but higher than the last few sessions had been).  I spoke to my doctor about how I'd been feeling lately, and he agreed to increase the lasix for a couple of days to see if that helped with both the fluid retention and the blood pressure.  He didn't want to change the amlodipine again because we both know that it's going to cause lower extremity swelling on me, so the hope is that losing some of this fluid will lower the bp, and I'm on board with that theory.

But tonight, right before Izzy's gymnastics class (which I had actually planned on going to for the first time since transplant) I casually checked my lab results from today and just felt like I had been punched in the gut.  I just can't understand, and I just can't stop my mind from swirling around the number.  What does it mean?  What is this kidney trying to tell us???  Is it unhappy about the higher blood pressure?  Is it upset about the fluid retention?  What does it NEED to be appy again?  I just feel so defeated.  I'd love to think that this lab result was an outlier, but I don't.  My gut has been telling me something is off all weekend, and my gut was right.  I'd love to think that when I get labs done on Wednesday again that it'll be back in the 3000 range, but my protein hasn't ever dropped that fast.  Once it gets high, it takes weeks to recover.  In my brain, seeing that number tonight set me back 2 more weeks.  That's 2 more weeks of plasmapheresis....2 more weeks of this catheter...2 more weeks of the early morning drives...2 more weeks of a less-than-ideal existence.

WHY did I even check the results?  It's completely ruined my night, and made me think of all sorts of horrors.  Even though the results wouldn't be any different, I still wish I had heard them from my doctor.  And I think that might be a problem for me too.  I realize that I'm becoming very dependent on him for my mental stability in regards to all things "kidney", and I think that's dangerous.  SOMEDAY I'm going to have to deal with setbacks like this possibly, and not have the luxury of a face-to-face or scheduled phone call with my doctor the next day.  I have been INCREDIBLY fortunate in that my nephrologist continues to have regular contact with me this far post-transplant.  I'm not sure if "lucky" is the right word because the reason for the continued contact is due to the intricacies and complications of my case.  Most patients at this point have been either released to their local nephrologists, or are seeing PAs (physician assistants) regularly and seeing their doctors with much less frequency.  I haven't even had one set of labs done locally yet, and I'm terrified for that day for fear that they're going to screw up the processing of the labs, and then throw off my meds.  

I'm guessing this happens to a lot of people who have been through some sort of trauma.  And let me be clear...the transplant itself is not the trauma I'm referring to.  The transplant has allowed me to be here to bitch today :)  The trauma is the recurrence of my disease, and the assorted complications due to it.   I'm strong, yes, but a part of me is terrified of being released from my team at Mayo.  I guess  a part of me may also be thrilled when that time comes, because that means I'm well enough to be on my own, but I'll probably always be a teeny bit terrified.  It's clearly time for me to start seeing my therapist again to help me work through these issues.

Living by the numbers....

I feel like I'm letting "numbers" dictate my life right now.  Between the scale and my blood pressure cuff, I feel like numbers dictate everything about my day.  More specifically, it's affecting how I feel physically.  I may be having a good day, but then I'll step on the scale to see how the diuretics are working, and when I see that I've continued to gain weight, I freak out.  That makes me want to take more diuretics, which are inherently bad for my new bean.  And then I start to feel like I'm drowning in fluid, even though I felt find 5 minutes before.

I swear, all of this shit is really starting to mess with my head and I need to figure out how to get in front of it because I'm sick to death of reacting.

The weight really bothers me, I can't lie.  I think I should be lighter than I am because of all of the muscle tone that I lost after surgery.  And I also only eat half as much as I used to, so I don't understand why my weight is nearly the same or a little more.  I know that I'm retaining fluid, but it feel like it's set up residence in my torso lately and it's uncomfortable.  I've spent a lot of time this weekend lying on the sofa with my heating pad because it's unbelievably cold here in Minnesota right now, and it feels like I feel worse the longer I sit here.  Once I get up and move around, I feel a LOT less pressure in my chest and lungs.  But at the same time, I've been sitting a lot trying to keep my legs up to prevent swelling in my lower legs.  It's gotten a lot better since we switched up the amlodipine (blood pressure med) on Friday, only taking it in the evenings now as opposed to mornings and evenings.  That's made a HUGE difference in my ankle swelling.

With all of the protein I'm still spilling (which is certainly less than it was but not as little as we'd like) I'm bound to have some swelling, but it's hard for me to deal with any of it.  My expectations after transplant are to have a normal life.  No one goes into a transplant thinking about all of the sacrifices they'll have to make, or the substandard parts of their life.  I sure as hell didn't.  I don't want to be a whiner, but my expectations after transplant are to live a completely normal life (except for all of the meds....I can deal with those), but I don't want to have to watch how much potassium or phosphorus I consume, and I don't want to have to freak out about salt because I'll retain fluid.  I just want to live like a freakin' normal person.

Since we stopped the amlodipine, my swelling in my legs/ankles has gone down, but my blood pressure has gone up, which I'm sure will make my numbers shitting tomorrow when I go to Mayo.  I can't get into plasmapheresis until 1:30pm any day this week which makes for long days when you have to get blood work (which has to be done by 8:30am).  Luckily, tomorrow I only have urine labs, and I can do those at any time, so I won't have to drive at 5:30am!!!

I was talking to my doctor last Friday, and mentioning that both Izzy and Joacim were showing signs of getting a cold, and he then wanted to do an IVIG infusion (bleh), but with plasmapheresis being so late, I'm not sure how we're going to fit it in, so I have absolutely no idea what I'll be doing this coming week except for tomorrow.  The rest is totally up in the air.

Right at this moment, I'm just not feeling great.  I can tell when my blood pressure is high, and I can feel every kilo of weight that's extra.  It makes every breath noticeable, and a constant reminder that I'm still not OK, and that there's still not an end in sight.  I wish I could go a whole week without having to check my weight or blood pressure....to see if it would change how I feel physically.  I mean, I wonder how much of this is in my head and how much is real.  I honestly can't tell anymore.  And what's in my head can be manifesting physically too, so I don't know if I'm ever going to know.

69 days post-transplant

There were a few times over the weekend that I wanted to get on here and blog about how great I was feeling, but I was feeling so great that I didn't feel like blogging!!

A little recap.....my doctor started me back up on Lasix (a diuretic) last Monday (40mg 2x/day) as I was having some issues with fluid retention.  By Thursday, I had gone from ~66 kilos to ~62 kilos, which is a pretty drastic weight loss in that short of a period of time.  Diuretics aren't exactly good for the kidney (and my creatinine had gone up since I took them), so I stopped taking Wednesday night and wanted to see what would happen.  Honestly, I was surprised that things went pretty well.  As I said earlier, I felt really good this weekend.  I cooked some meals, walked A LOT on the treadmill, laundry.....NORMAL things.  And I could breathe....it finally felt like I could take a deep breath (figuratively and literally).

By Sunday I started to notice that the weight was creeping back up again, and I had a difficult time falling asleep last night, so I took 20mg of Lasix this morning to see if I could pull off a little extra fluid today.  I'm glad that my doctor has taught me enough, and trusts me enough, to adjust my dose as needed.  He wants to make sure I'm comfortable, but not too dehydrated (as that can happen quickly on diuretics).  Since I was getting uncomfortable, I started again, but at a much lower dose.  I'll weigh myself here in a little bit and see if I need to take another dose this afternoon.

I drove down to Mayo this morning for labs and plasmapheresis.  Have I mentioned how freaking cold it is here right now?

My labs have to be done before 8am in order to get my Prograf trough level, but my plasmapheresis wasn't scheduled until 1:00pm, so after labs I headed over to the 19th floor of the Mayo building, ready to spend the morning binging on Netflix and napping as that area is really quiet with comfy chairs.  And the view isn't so bad either ;)

I was so happy when the apheresis unit called at 8:30 and said that they could get me in at 9:30am.  WOOHOOOO!  Saved from spending the whole day at Mayo!!!!  The session was uneventful and they changed my site dressing.  And with a new year comes a new deductible, which is why I now know that it costs around $120 in supplies just to change this dressing and I have to have it done every 7 days...

It was time to do it anyway, as the last site change had been last Monday.  After my shower on Saturday night I noticed that the Tegaderm (that's the thin plastic film covering the entire site....it's what they use to cover an IV when they put one in your arm) wasn't keeping everything sealed, and the antibiotic disc that surrounds the actual site coming out of my skin was completely soaked.  I, of course, freaked out a little, and then got my mental shit together and covered it as best as I could utilizing my PD catheter training.  It seems to have done the job as the site still looks great, but I'll confess that I'm starting to get anxious about getting this thing out.

* Side note:  Just checked my lab results and numbers are better.  My protein is still going down (albumin/creatinine ratio is at 4484 mg/g, which is down from 5509 mg/g on the 6th), potassium is still high but I'm retaining fluid so I'll explain that one away, and my prograf level is 6.9, which I think my doctor will find acceptable right now.

I can tell you that plasmapheresis is really starting to take it's toll on my body.  I was curious, so I took a look through my medical records, and would you believe that I've had 32 plasmapheresis sessions!!!  That is a freaking LOT of hours lying in those beds, getting my plasma removed and replaced with albumin.  When I first started doing them, I didn't really notice a difference (you may recall that I did 4 of these sessions the 4 days before transplant).  But now, I can definitely can tell.  I always ask for the calcium during the last bottle in order to remove the tingling sensation in my body, and I'm terribly exhausted when it's over.  I can make the drive home without issue because I'm just sitting, but the ache starts to set in during the drive, and by the time I get out of my car when I get home I'm pretty sore in my hips and legs.  I'm not sure why this is, but it's definitely a side effect that I experience.  And I'm usually pretty wiped out the rest of the day, so now I don't plan on doing anything on the days I have plasmapheresis.

Even through all of this, I'm trying very hard to walk for at least 30-60 minutes a day on the treadmill.  Even if is a slow walk, at least it's movement.  I also started using my pilates machine as well (very gently, of course), knowing that the journey to regaining muscle tone is going to be a horribly long one and the sooner I get started, the better.

One last thing.....Prudential (who is the company that is managing my short term disability) is processing my long-term disability claim in case I'm not ready to return to work by February 16 (which is the last day of my short term disability coverage).   This kind of freaks me out a little, as I can vividly recall the following words coming out of my mouth, "if I need long term disability, then something has gone horribly wrong".  I guess it's good that Prudential is on the ball and wants to ensure that I don't have a gap in benefits, but I'm still hoping that there will be a way to get back to normal somehow soon.

After 2 days of Lasix.....

I've been feeling pretty poorly lately, no doubt about it.  I feel full and swollen to an extent that I can't quite convey.  It feels like my lungs are getting squished under a bunch of water.  I feel swollen in my feet, ankles, lower legs, abdomen, chest, neck, nasal cavity and eyes.  Seriously, nearly everywhere.

I spoke with my doctor during plasmapheresis on Monday and voiced my concerns/symptoms.  I was thinking that this was caused from either the Cellcept (immunosuppressant) or the amlopidine (blood pressure), but my doctor could see that I was really swollen, and suggested we start up the Lasix (diuretic) again, and I could not have been more thrilled.

I started it yesterday as soon as I was done with plasmapheresis, and took another dose around 4:00pm.  When I woke up this morning, I felt like a new person.  I mean, I could BREATHE and I had energy and I wasn't so damn shaky and unsteady.  It was awesome!  So I totally took advantage of it and got my hair done, went to the grocery store and the dry cleaner, back to the grocery store (because I forgot my bags at the drive-up window...idiot move) and then the pharmacy and finally back home in time for our new treadmill to be delivered and assembled.

I'm sure people are wondering why I did all that, and the answer is because I COULD.  I know that the weather is going to make a MAJOR shift this weekend, and it's going to become extremely cold and extremely dry, which means people are going to get sicker and sicker as the week progresses, which means I'm probably going to end up being inside most of next week.  Of COURSE I'm worried about germs.  I'm ALWAYS worried about them, but I also want to live my life, and when an opportunity presented itself this morning in the form of me actually feeling human, I decided to live like I was one.

The tiny little problem here is that, when Joacim got home, he said that I looked swollen, and ever since then I've FELT swollen.  I've appreciated Joacim's honesty when it comes to the swelling because it was validating how I felt.  But today I wasn't feeling swollen when he said it, yet it totally affected how I physically felt after he said it, and I've been miserable ever since.  I had been wearing compression stockings since I got home because my ankles and feet were enormous, and those things work really well but tend to make me feel....well....full, for lack of a better description.  I just took them off and feel better, but my abdomen is still pretty puffy, so I don't know what's going on.

I feel like something's still not quite right.  I thought that 2 days of Lasix would put me back where I wanted to be and get my blood pressure under control.  My weight has lowered, but my blood pressure is still as high as before (160/100), and that's with 2 bp meds currently.  I have labs, plasmapheresis and an ultrasound scheduled tomorrow to see if anything is going on with the kidney (more fluid pockets????) so please keep your fingers crossed for a drama-free day and drama-free results.  Thanks all!

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.

Update since last Tuesday's surgery

I've been so sick of living the life I'm currently living that I sure as hell didn't want to blog about it.  But then again, a year from now or 5 years from now, I'm sure I'll wish I had, so here goes.

Last Tuesday I had a surgery to put a peritoneal window in my abdomen.  You may recall that I had a procedure the week prior that put in a temporary drain to remove fluid from the fluid pocket that had formed around my kidney, which was putting pressure on the artery to my right leg and my ureter from the kidney.  This surgery is the permanent replacement for that temporary drain.

The surgeon told me that it would probably hurt more, so I thought I was prepared, but boy was I wrong.  This was, quite possibly, the most painful thing I've ever had done.  More painful than transplant, more painful than drug free natural childbirth.  Just hella painful.

The surgery itself was apparently a success, but I've been suffering in one way or another every since.  It took 8 days after the surgery to have a bowel movement, and I've been experiencing some pretty significant edema and high blood pressures as well.  It was originally a one-night stay in the hospital, but I was in a significant amount of pain and having difficulties with vomiting from the dilaudid they were giving me, so they gave me a pain pump again like after the transplant and I ended up staying another night, checking out on Christmas Eve.

It took me a 1/2 hour to eat the corners off this cracker before I got sick again.  Food was not my friend at this time.

Prior to checking out, I had another plasmapheresis treatment and they added FFP (fresh frozen plasma) to the end of it (I can't even remember why at this time).  I'd had FFP 1 time before and developed hives, so they pre-medicated me with IV benadryl before they started the FFP at the end of the plasmapheresis, but nearly immediately I started having problems......severe itching and hives that ended up covering my entire body.  I have no idea how much medicine is in IV benadryl, but I ended up having nearly 3 doses of it, and the reaction slowed but didn't stop.  I was like a drunken idiot with that stuff, not really sure if I was awake or asleep when talking.  The doctors on the floor where I was were, well, awful.  I mean, who the hell asks a drunken sailor how they're feeling when I can't even tell if I'm awake???  I was so freaking annoyed.  They would come in and do rounds, and all of a sudden there were 5 doctors with no personality staring surrounding my bed and staring at me.  So I just stared back at them.  Their bedside manner was truly awful.  I couldn't wait to get the hell out of there that time, even though I was in so much pain.

This was my legs and feet covered in hives.

....and my hand

What I absolutely love about my doctor is that he approaches my problems like an engineer would.  We have many problems to solve, but trying to solve all of them at once won't work.  We pick one, work on it, solve it, and then move on to the next one.  It takes an incredible amount of patience, but its the right way to problem solve.  The surgeon did a biopsy while putting the peritoneal window in (which was great because it's one less separate procedure I'd have to endure) and the kidney looks great.  My doctor said that if he didn't know it was my kidney, he'd look at that biopsy and think it was a perfectly boring, normal kidney.  So it appears that the rejection episode that I was experiencing has been resolved, and the kidney is functioning beautifully.  The last creatinine I had was 1.2, and my GFR FINALLY hit 50 again!!!

So now, the 2 problems we have left to work on are my high blood pressure that the proteinuria.  For the blood pressure, we switched blood pressure medications while I was in the hospital last week due to my potassium being too high (I was on Losartan), but a side effect of that new medicine (alpidoline) is swelling around the ankles.  Awesome.  That medicine hasn't been working nearly well enough so we also added another one (labetalol) this past Wednesday.  It works really well, dropping my bp by 20 points within 1/2 hour, but I'm only taking it twice a day right now and at a low dose.  The first day I thought it was working, but yesterday and today's bp readings don't look as good.  It could be because I'm retaining a lot of fluid right now, but I'm honestly not sure why.

Yesterday was the first time that I actually seriously measured what I was drinking.  I took an old milk jug and marked off 1, 2 and 3 liters respectively with the goal of me drinking 3 liters a day.  I don't know how many of you have actually tried to drink 3 liters, but that's a HELL  of a lot of water. I felt like I was floating yesterday, and I wasting urinating out nearly enough water, so I continued to swell as the night went on, gaining nearly 3 kilos yesterday.  Miserable is really the only word to describe it.  But overnight, I got up 4 times to urinate, and woke up this morning to a more normal weight.  It's like the kidney couldn't keep up with all of the water I was intaking.  We'll see how today goes.  I could take a Lasix and get some of this fluid off, but I also want to see if this is something that's going to resolve itself.

I tell you, living this post-transplant life is scary and exhausting.  I'm sure most people think I'm a hypochondriac at this point, but screw that.  No one knows their body better than a person with a diseased body, and I know that something is still not quite right.  I feel fragile, like I'm always waiting for the other shoe to drop because it inevitably will.  It's a frustrating and lonely existence, but one that I can't really share with anyone because they all want to be hopeful, while I want to be realistic, and those things usually collide when it comes to chronic disease (in my experience, anyway).  My next appointment is Monday where I'll see my doctor again and do another plasmapheresis treatment (no FFP this time).  We'll also do another urine sample to see what my protein looks like, as the last lab showed 6530mg/g of protein leakage.  That's the highest it's been since transplant.

My doctor is telling me that part of the reason my protein is higher is because my kidney is working better, filtering more urine and thus showing my protein.  I'm not sure if this makes sense because I would think that this is a ration, thus volume is taken into consideration, but it's something I need to follow-up with him on.  I trust him completely, and he always answers my questions in a way that makes complete sense, so I'm sure I'll get the answer I need.

And now another surgery....

Yesterday I drained ~600cc of fluid from my abdomen.  Combine that with the diuretic effect of the lassie I took and I lost 3.8kg since Monday!

That might have taken it a bit too far, but I feel much better.  I got my albumin/creatinine results back from this morning and the amount of protein spillage doubled.  Obviously this is not the direction I want it to go, but I can only deal with one problem at a time right now.

While at Mayo I met with both my doctor and the surgeon who did my transplant.  They believe that the fluid pocket is a lymphocele (there are lots of different fluid pocket types like serum and urinoma), and they both agreed that, based off of the amount of fluid that's coming off, that the best long-term solution is surgery.

This little passage is from an article titled "Perirenal Transplant Fluid Collections" written by Howard M. Richard, III in 2004:

Lymphoceles are well-known complications occurring after transplantation and can be seen in up to 50% of patients.2 Up to 18% of these collections are symptomatic. Symptomatic collections can appear from 2 weeks to 6 months following transplantation. The term “lymphocele” (lymphatic collection lacking an epithelial lining) originated in the Japanese literature and was described as a complication of pelvic lymph adenectomy by Kobayashi and Inoue.3 Lymphoceles may result from drainage of the lymphatics divided during surgery to expose the iliac vessels and from injured lymph channels in the donor kidney hilar vessels. Factors predisposing to lymphocele formation include acute allograft injection episodes, acute tubular necrosis, transplant biopsy, retransplantation, and even adult polycystic kidney disease in the recipient.4,5 More recently, addition of sirolimus to cyclosporin, immunosuppression that is commonly employed in transplant patients, has been associated with an increased incidence of lymphoceles.5

Now I'm going to layman's terms that paragraph above according to my discussions this morning:

Typically, there isn't available space in the abdominal region where they put the transplanted kidney.  They have to move my bowels to one side and my muscles to the other to create a pocket.  In the process of doing this, there are microscopic vessels containing lymphatic fluid that are damaged/cut in the process.  This fluid then ends up draining around the kidney, and in my case, they build up because my body can't absorb that amount of fluid in that location.  The placement of the drain really helped, but they can't keep this drain in long-term, so the solution is to essentially create a passage to my peritoneal cavity where the fluid from this lymphocele can drain permanently and my body will be much more efficient at absorbing.

So, I'll go back to Mayo Monday morning for plasmapheresis and some extra frozen plasma that will cause me to get awful hives unless I pre-medicate with Benadryl, which means Joacim will need to drive me because I won't be able to.  We'll plan on doing the surgery Tuesday, which means I'll have to stay in the hospital Tuesday night inpatient for observation because of the general anesthesia.   They'll go through the same incision that was created when I got the transplant, and the procedure itself will take very little time, but they'll also remove this external drain at the same time.  Pending any issues, I should be able to come home Wednesday.  My surgeon did warn me that I might be in quite a bit of pain as the 2nd surgery is usually more painful.  This part sucks a little bit because who wants to be recovering from surgery over Christmas, but there really isn't a good alternative, so recovering is what I'll be doing.  I hate that I'll probably need to take oxycodone for the pain because I finally feel like I'm figuring out this whole bowel issues I'm having, so it's like starting over with that whole nightmare, but I'll deal with it.

I do hope that, once this surgery is done, that we can re-focus on the protein spillage.  I'm sure I'll have to have another biopsy after Christmas to see if the rejection is resolved, but at least the fluid pocket issue should be resolved.  Having all of these issues at the same time has made it difficult to focus on one thing, so by knocking them out one at a time we'll eventually get to the protein.  The good news is that my creatinine went down to 1.5 (from 1.7) so that tells us that the kidney is a little bit happier than it was on Monday.

Today is 6-weeks post-transplant

It's been 12 days since my last post.  It's been 42 days since my transplant, and yet here I am, still going to Mayo 3-4 times per week.  I honestly thought I'd be on the road to healing by this point, but a continuous stream of setbacks keeps the future uncertain.

I had plasmapheresis a couple of times last week...the attempt is to slowly keep weaning me down and see how my protein levels change.  I had a session last Thursday, and my protein was around 1600 after that.  I was able to spend 3 solid days at home (yippee for small wins), and went back to Mayo on Monday for plasmapheresis, and it was up to 2300 by then.

I was talking to my doctor about the new side effects that I had been experiencing lately....well, since last Thursday, specifically.  I started to notice some pitting edema in my right leg, which continued to get more and more severe as the weekend wore on.  I ended up wearing my hospital-grade compression stockings 2 days in a row and that did seem to help a lot, but it also felt like it just pushed all of the fluid to my torso, and it was making it very hard to breathe.  My bowels continue to be an issue, and my blood pressure is skyrocketing (~170/100).  I also "felt" the kidney all the time...like there was a bunch of pressure behind it and it was pushing out.  I just generally felt pretty crappy.

When I had my biopsy a couple of weeks ago, they noted that there were a couple of fluid pockets around the kidney at that time, but they were considered small enough that my body would eventually reabsorb them.  After describing my symptoms and seeing my blood pressure readings (167/87 at plasmapheresis yesterday morning), my doctor decided to get an ultrasound done as soon as possible to see what was going on.  He suspected that the fluid pocket was larger, and was putting pressure on both my ureter (drains urine from kidney to bladder) and on the blood vessel that goes down my right leg.  Initially they couldn't get me in until Tuesday afternoon, but my doctor worked his magic again and was able to get me in yesterday afternoon.

It was probably THE LONGEST ultrasound I'd ever had.  The tech was clearly seeing things he didn't expect, but he couldn't tell me anything.  After about 40 minutes he was finished, and left me in the room to consult the doctors.  So I just laid there in that room, alone with nothing but my thoughts.  Eventually he came back and said I was free to go, and I just didn't know what to think.  My doctor eventually called me that evening and told me that they had found exactly what he suspected.  I was honestly relieved because mechanical problems have solutions and fixes, unlike all of the other problems I was having.  The solution was to drain the fluid.  The hope is that, by draining the excess fluid, there will be reduced pressure on the blood vessel and the swelling will resolve itself, as well as the back pressure my kidney is experiencing from the fluid pressure on the ureter.  This should lower my blood pressure eventually as well as hopefully lower my creatinine and protein.  It's going to take a few days to see any actual results though.

So, Joacim and I headed to Mayo bright and early this morning for another procedure.  We went to get labs done at Charleton first, and then headed over to St. Mary's (which I had actually never been to before) to have a drain put in my abdomen.  Awesome, right?  Another tube hanging out of my belly.  Now, they could've just drained the fluid using a needle, but there's a good chance that they would've had to do it again in a few days, so from a long-term perspective, having this JP drain put in saves me from future procedures.  The procedure went off without a hitch...I actually ended up having the same doctor that did my kidney biopsy, so it was nice to see a familiar face.  I have the drain in now, and it's already removed a lot of fluid....over 250cc's so far.  I think I can feel a difference near the kidney, but my leg is pretty swollen still.  I'm patient though...I know it'll take some time to resolve.

The plan is to keep this drain in for 4-5 days, and hope that the fluid pocket kind of collapses on itself.  Then they'll keep the drain in but cap it off for a couple of days to make sure no more fluid pockets form, and then eventually it'll be removed.

The drain is under the big square bandage, and that beautiful bulb in my hand is full of fluid.  Totally gross, I know.  And there's NO WAY of hiding this thing, so it looks like I'll continue to be a recluse for the next week or so :(

These are all of the supplies that I need to maintain this thing.  I have to empty it whenever it's half-full (which is about every 2 hours), and I have to flush the lines with saline two times per day.  I can take a shower (thankfully) but need to try to keep it as dry as possible (which will be impossible).  Luckily they sent plenty of bandages.

It's pretty clear that Joacim is nearly as excited as I am ;)

Honestly, this is not at all what I thought it would be like...not by a long shot.  I've been in this medical bubble for 7 weeks now (counting the week I spent at Mayo pre-transplant) and it literally is all I know.  I've run into a few people "on the outside" and I honestly just felt awkward.  Most of the time people have no idea what to say to me, and I totally understand that.  In their mind, they probably thought I'd be fine after transplant, never considering that this alternative was a possibility.  I'm sure my mind is playing tricks on me as well.  I'm so self-conscious right now because I think I have a bit of a moon face, and my eyes are pretty puffy from the fluid retention.  I think people just don't know what to think.  I find that I'm VERY uncomfortable in the land of healthy people right now.  I mean, let's pretend for a second to not talk about my kidney....what else would we talk about? I mean, I've been living in my medical bubble for a long time now....I haven't done anything that isn't somehow related to my kidney, which makes me a pretty shitty conversationalist at this point.

If you happen to see me out and I'm all hells-awkward, now you know why :)

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.