Transplant update

I went to my transplant evaluation at the U of M Transplant Center yesterday, and before I go into any details, I'll just say that it didn't go as I'd hoped.

I was so very focused that I didn't take a single picture all day, which is weird for me.  This is something that I typically would've documented the hell out of, but I think that since Joacim was with me, I'd always leave my purse and my phone with him, so I rarely had the ability to take a photo.  Even so, I won't forget the day.

It started out with 22 vials of blood being drawn, while I had been fasting, mind you.  Oh, and a cup of urine too.  22 vials is EASILY a record for any of my draws...previous record was 17.  After the blood draws, I had a chest x-ray and an ECG.  Next, our transplant class.  Now, honestly, I didn't get a lot out of this class that I didn't already know.  I felt as though it's targeted to people that have no exposure to transplant, which certainly isn't me since I'e done my research.  Joacim and I were kinda floored by the lack of knowledge the other people in the class had about transplants in general, or even their own health.  The instructor asked one gentleman what kind of diabetes he had, and he said, "I'm not sure".  WHAAAAAT????  What do you MEAN you're not sure???  How in the hell is that even possible?  I just don't understand how people can go through all of this and not ask questions.  It's great to have faith in a system, but my nature is not to give up all control to someone else.  And yesterday I realized even more than I am a pretty damn well-educated patient, and advocate for myself.

And then we met with the surgeon, and this is where the wheels fell off of my happy wagon.  The surgeon that we met with is actually the Director of the Renal Transplant Program, which is why what he said makes it so much worse.  I don't remember all of the words, but I vividly recall him saying that he was not comfortable with what I was proposing and advised against it.

Ouch.

It's probably best if I explain a bit how this works.  I met with a surgeon, nephrologist and social worker yesterday.  Next Wednesday, these people, along with their peers (which is more transplant surgeons, nephrologists and social workers) will meet in a committee to discuss the patients that came through the week prior to determine who is and who is not a good candidate for transplant.

Okay, back to my story.  When I heard the surgeon say it, I cringed.  He seemed surprised by what I was proposing, which irks me a bit because I know that my transplant coordinator had full understanding of what my situation was.  After talking with him, I met with a transplant nephrologist.  Unfortunately, he and the surgeon had spoken in the hall prior to me getting to see him, so I felt that his opinion could've been slanted a bit, but he tried to reassure me that he would be very objective during his evaluation, and I did actually get some relief out of that.  When that meeting was done, we had lunch, and then went back to the transplant center to meet with the social worker and the nutritionist.  Prior to that, I had a little scare.  They needed to do ANOTHER blood draw to do a 2nd check on my blood type (to prevent any errors).  I must've been a bit dehydrated, because the plebotamist had a bit of difficulty getting my blood, so he started moving the needle in my arm.  I was watching him, and I started to feel light-headed, and then everything started to fade to black.  They called the emergency response team and put me on a stretcher because my blood pressure dropped to 75/43.  I felt AWFUL.  They moved me to a room (and hit every single corner on the way :) to observe me, and luckily I recovered fairly quickly.  Apparently my body doesn't enjoy it when needles are messed with under the skin :), but they did manage to finish the blood draw (which ended up being 4 more vials, so my record is now 26 vials of blood in a day.....WOOOOHOOOOO!

After that little nightmare, I met with the social worker and nutritionist, and then had an EKG, and was done for the day.  The only good part of the day is that they've agreed to put me on the waiting list (inactive) due to the fact that my GFR was below 20 back in December when I became nephrotoxic from prograf.  The advantage that getting on the list gives me is that, if Joacim doesn't work out as a live donor and I have to rely on a cadaver donor, then my wait time starts from when I was originally put on the list, which would be now, which would be an advantage if I need to go that route.

If my creatinine was higher, this transplant would be a non-issue, but you see, my kidneys are technically still functioning.  They could still function for years to come without intervention.  But the fact that I lose more than 12 grams of protein a day has a host of side effects on it's own.  I have extremely high cholesterol (600+ without drugs, 300 with), a very low albumin (0.9 at last check) and I'm on blood thinners and blood pressure medications.  I'm severely malnourised.  These symptoms and side effects make my life a living hell.  Daily.  But a doctor looks at my labs and sees that my creatinine (which is a measure of kidney function) is down to 1.3, and they say stupid things like "you're kidneys are working great" and "you don't have toxins building up".  Now, stepping back a bit, I know that they are used to patients that are at full-blown ESRD, or in the hospital weighing 400 pounds with diabetes and heart conditions.  I AM NOT THAT PATIENT.  Yet it seems to be nearly impossible for doctors to not compare.  When they check my legs for swelling, and I say how bad it is, they say other extraordinarily insensitive things like "I've seen worse".  Ummmm, pardon me, but I could give a shit what you've seen.  We're talking about me.  MEEEEEEEEE.  MY life is miserable.  MY pain is real.  MY concerns are valid.  Every single patient is different....there are few comparisons to be made.  I know that, as doctors, they are trained to save my kidneys as long as possible, but I'm ready to ditch these things and get a new one, and they look at me like I'm absolutely insane for proposing a pre-emptive transplant.  I never want to hear a doctor say, "Well, we've never encountered this before."  Ugh...my least favorite thing to hear.

Sorry, I'm ranting a bit, but I'm so frustrated/scared/mad/confused/desperate that I don't know what else to do.  I had 20 minutes to meet with people that are going to decide my fate.  I've spent 8 years getting to this point, and if they say no, then what?  What do I do?  What do I have to hope for?  Another few years of my daily nightmare?  Am I supposed to be thankful for that, because I'm not. I want my life back.  I want to crawl down on my floor and play with my daughter right now, but I can't because of my swelling, which is currently all the way up to my chest.  I am carrying 26 pounds of extra water today, and I am SUFFERING.  And what makes this worse is that a transplant may not even help because my disease could come back...within hours, and they won't know until I actually have a transplant.  Their biggest fear is that they go ahead with the transplant, and my FSGS comes back, and my symptoms are even worse.  I know that's a risk...I'm very well aware, but I guess for me, at least this route provides some hope, blind though it may be. My current situation is seemingly endless right now, with very little hope.

When I was first diagnosed with FSGS, I was scared, sure, but I managed it.  It didn't impact my daily life (except for remembering to take my meds and that awful period on prednisone).  But now, as soon as I wake up, I'm in it, and I'm in it deep.  It's affecting my work, my life, my mental stability, my daughter, my husband....every single facet of my life.  And I'm tired.  And I'm scared, because I don't know what I'll do if I really do hear no next Wednesday.