June 23, 2011

Well, it has been just over two weeks now, and it is amazing how well I feel, with two minor exceptions…

Twice in the last week I had days where I felt as if I was getting a urinary tract infection – I had all the classic symptoms…burning when going, going very frequently, but going and producing very small amounts of urine.  I was good, I did what I was told, I called the transplant center.  They ordered a urinalysis and I produced a sample for them.  The sample came back negative.  However, I was told by my surgeon that what may actually be happening, is the stent that was placed between the ureter (coming from the new kidney) and my bladder may actually be irritating my bladder.  The surgeon said if this continues he would consider taking it out earlier than it is scheduled to come out…early or not, that is one appointment I am not looking forward to – I think I may actually have more anxiety over that appointment than the transplant itself.

Speaking of anxiety, I am still having issues with two things.  The first is with the new kidney.  As great as a gift that Tommy gave me, I am still trying to wrap my head around the fact that I am walking around with a part of him inside of me.  I am extremely grateful, but it is still a little weird – though, I couldn’t imagine a part of anyone else in me but a part of Tommy.

The other thing that is producing a little anxiety is getting use to all of the new medications and just the sheer number of pills I am taking everyday – 32!

My new meds include Prograf and Cellcept, both of which are anti-rejection/immune system suppression medications.  At first the Prograf was giving me headaches, but that seems to have subsided now, and the Cellcept was toying with my gastrointestinal system, but I think I am finally getting use to it.  Other new meds include, Valcyte (anti-viral), Bactrim (antibiotic), Nystatin (anti-fungal), Pepsid (to reduce the incidences of stomach ulcers since these new meds can do a number on your stomach), and Imdur (Heart…since I had some minor angina after the transplant).  So far, keeping with the med schedule has been fairly easy since my doctors set it up that I take meds only twice per day, so I do it at 8am and 8pm…and also keeping with the amount of water they want me to drink (1½ - 2 liters per day) has been easier than I thought it would be.

Next up…I get my staples removed next week – I can’t wait, because they are at the point now where I want to start pulling them out myself, though I know that would not be a pretty or pleasant experience.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

June 15, 2011

The deed is done!

Last Tuesday my life began again with a fresh start and a new kidney!  Tommy and I went through our respective surgeries in the morning, and by late that afternoon/evening we were both in our rooms recovering.

I was actually feeling pretty good after the surgery, some pain but not a whole lot.  Tommy, on the other hand, was a different story.  I felt bad because the nurses kept telling me that he was in a lot of pain and then had nausea from some of the pain medications he was given.  Though, I was having a little fun with my nurses as we were trying to guess how many of his nurses he had hit on since being in his room on the floor.

We actually had an unofficial race…to see who could make it down to the others room first.  At about three in the morning I was awake and couldn’t sleep.  So I asked one of my nurses how mobile I was, as I was hooked up to several machines. She said I could be as mobile as much as I would like and that she would bring the machine along for the ride.  I seriously thought about taking that walk, but then had second thoughts.  Tommy ended up beating me…he made it down to my room by nine that morning.

By all accounts from the surgeon, the surgery went well with little complication, and the best part of all is that it appears to be working, not well, but great!  My creatinine (a measure of kidney function) was 4.0 before the surgery, which is equivalent to about 15% kidney function.  One day later that number had dropped to 1.4 or close to 60% function (this is within the normal range).  The following day it dropped even further to 0.9 (or better than 90% function!) and has remained in that area since.

I have a follow-up with the surgeon on Thursday and I am hoping that at that time he will take out the staples from my incision – I have 22 of them.  I think once those are out much of my soreness and tenderness in the area of the incision will soon start to go away.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

June 3, 2011

Well, the time is almost here.  Yesterday it became very real…not that I need any more reminders that this is all a bad dream and I’m going to wake up and be thankful that it was, in fact, all a dream.

Yesterday, Tommy and I had our pre-admission testing done and I met with my surgeon and transplant coordinator a final time before the big day.  Needless to say, it was a long day for both of us – first meeting with an anesthesia nurse and then later with the surgeons – Tommy also saw his surgeon as well.

I guess the interesting part of the whole day for me was when the transplant coordinator and the surgeon went into detail of what will happen.  It wasn’t like “you’ll go to sleep and when you wake up everything will be done.”  No, they went into a little bit more detail, which I appreciated because, out of curiosity, I have been wondering how the surgery will go.

They said that Tommy will go in first and then I will go in about 45 minutes later.  It was explained that the plan is to remove Tommy’s right kidney and uretor (the drain in the body that goes from the kidney to the bladder) and then place it on my left side leaving my right side free for a later surgery if a pancreas were to become available down the road.  What I was a little surprised at, was that, even though they were placing Tommy’s kidney on my left side, it was ok that they removed his right one – apparently the kidneys are somewhat symmetrical and they will simply “flip” or turn over Tommy’s kidney before transplanting it into me.  For some reason, I always thought, naively, that if you were taking a right sided kidney, it would have to be transplanted on the right.

I was told my incision would be like an arch or a semi-circle, probably just about the area of where I wear a belt and that they will tuck the new kidney into the pelvis, apparently there is enough room there.  The one thing that I really cringed with was when they described the process of connecting the uretor to the bladder and then placing a stent there to hold it open – what made me cringe was the fact that about a few weeks after the transplant, they have to go and take the stent out – that will not be fun at all!

All in all, I was told that the surgery should only take about two hours…but I will wake up with what is called a “central line” – essentially an IV in my neck – it was explained that this will be used not only to flush my body with fluids, but also to deliver the initial doses of anti-rejection drugs.

Provided all goes well, and I am very hopeful that it will, my hospital stay will only be four or five days.  I want to thank all of you who have been following me through this journey…it won’t stop here, however.  I will keep writing about my experiences after the transplant is complete.  I have enjoyed seeing all of your comments along the way, as well as the many emails that I have received in support – thank you!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org