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.

Today is a sad day......

I found out today that a friend of mine...a young friend of mine, lost his battle with cancer.

He was diagnosed last year...2 weeks before his wife gave birth to their 2nd son.

His wife, bless her heart, is such a kind person.  She helped me immensely during my pregnancy with Izzy.  In fact, I was having lunch with her and her first son that day, and it was she who alerted me to the fact that, yes, I actually WAS in labor.

Although I didn't know him as well as I knew his wife, every interaction with him showed signs of his strong character.  His deep love for his family was evident to everyone around him, especially as he fought this cancer with everything he had.  He posted on Facebook about his treatments, or about how he was feeling, and I was always left in awe in how he faced it all and kept pushing through.

Everyone says things like "I can't imagine what it's like" in times like these, and I understand why.  It's because I honestly can't.  I can't imagine what it was like for him knowing that his future was going to be cut drastically short.  I can't imagine what it will be like for those two boys.  But most of all, I can't imagine what it will be like for his wife, my friend, to raise those boys without the man she dearly loved.

She always said that they'd rather spend money on adventures than gifts, and after reading an anniversary posting by him earlier today, I think they did that rather well.  The amazing adventures they had hopefully help his wife in these months and years to come. I hope they provide comfort to her knowing they truly "lived" life.

You will be missed, friend.  You're pain is over now.

Kettlebells are Killer.....

So I've been doing yoga lately.  I've not gotten into a good rhythm, which I believe will be absolutely impossible with my job, but I do the best that I can.  But there are some days where I just don't feel like leaving the house, which is how I felt yesterday.  I felt guilty for not having worked out for a few days, so I decided to pick up my kettlebell and get to work.  I picked http://kettlebellsworkouts.com/ as my resource to start back up again.  I had a Bob Harper DVD, but that thing was killer from the very beginning, so I wanted to ease into it.  I picked what I thought was a relatively simple, easy workout:

Workout 2 – The Buttocks Lifter

• Kettlebell Reverse Lunge – 10 each side
• Kettlebell Swing – 20 reps
• Kettlebell Squat – 10 reps
• Rest 1-2 mins and Repeat 3-5 times

I only did 3 repetitions of this workout, but I already felt it immediately after I was done.  By the evening, I had a hard time getting out of the chair.  By this morning, I was nearly bed-ridden.  Lucky for me in that my husband doesn't believe in pity (insert all the sarcasm you want here) and got me out of bed to do some yardwork, which feels AWESOME (again, note sarcasm).  How in the HELL can a 10 minute workout hurt SO bad the next day????  I STILL can't walk up and down stairs...I took a soaking bath in epsom salt and I'm lying here typing this with a heating pad on my butt.

Effective?  Yes.  Will I do it again?  Yes.  Will I complain as much the next time?  Probably. :)

It's a BIG week ahead!  Thursday is my transplant evaluation.  It feels like a dream, honestly, to be here now.  I'm a little nervous about all of the info I'm going to get, but excited to feel like I'm making progress in this whole nightmare.  My swelling went down for a day or two, but it's back again, but thankfully much more manageable.  It's all in my belly right now, and a little bit around my ankles.  It's certainly uncomfortable, but at least I'm not embarrassed to show my ankles right now, and I can wear bigger shirts to cover up the bulge.  Wish me luck this week!!!