Friday, January 1, 2016

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.


  1. Jenn thank you for sharing this post with us. I am so sorry you have to deal with all of this. As for the terrible bedside manner it is like salt in the wound. Something you definitely do not need or deserve. I know chemo was different then your procedures but it might be worth asking for pepcide AC along with the benadryl as well as a steroid. A lot of chemo therapies require a pre-medication for reactions and I look this and it helped quite a bit. Pepcide actually works well against allergic reactions. Again only something to consider asking about. I hope you start to get more answers and wins. Hugs from a concerned friend.

  2. Jenn, I appreciate you sharing your POV. I went through some of what you're going through, when I had my transplant, ten years ago. I really held back from saying that things could be like this, because everyone else was being so positive, and I didn't want to bring them or you down. I do get where you're coming from with your wanting to be realistic about outcomes. And it sounds like you have a rockstar doc! Keep doing whatever it takes to get yourself through it and know that you are often in my thoughts.


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