Tuesday, August 24, 2010

30 Day Blood Work & Surgeon Visit

Today, I completed blood work that needs to take place about 30 days before the transplant date (which is actually only 28 days from today) and met with one of the two surgeons that will perform the transplant (Candi and I each get our own surgeon).

The blood work is what I like to call the “go / no go test.” This is the last step in the testing process. The lab drew blood from both Candi and me and will ship the vials off to Johns Hopkins University for testing. The testing will mix Candi’s blood with mine to “make sure they play well together,” as Candi likes to put it. They need to make sure that Candi doesn’t have any antibodies in her blood that will attack my kidney when it is placed in her body. The transplant center has already tested Candi’s blood many times and are confident that she has no such antibodies so they are confident that this test will not present any issues. We are both hoping they are correct! We will have to wait 10 to 14 days for the results so we will have to patiently wait until then! We go back to the lab exactly 7 days before the transplant for the same test to be performed one last time.

The second part of my visit was with the surgeon. The surgeon showed me a picture of an x-ray of my kidneys (see below). He explained that they are going to take out my left kidney (along with the attached ureter and blood vessels). They plan to use laproscopic surgery. This means they will put in a 2 inch incision below my belt line and some small holes in my stomach in which to insert tools and a camera. They will then be able to watch the surgery on a tv monitor. They will pull the two muscles there aside and pull the kidney out through this opening. This saves them from having to cut through any muscles.

If they run into any problems, they could have to switch to an open procedure which would mean a larger incision in my stomach and having to cut through the muscle. This is a very safe type of surgery but requires a longer recovery period, is more painful, and results in more scarring but this is only required in 1-2% of the surgeries they perform. I’m hoping for laproscopic!

The surgery itself will last two to three hours if we are able to go the laproscopic route. The open procedure is actually quicker since they don’t have to work around the muscle. I should be awake before they finish Candi’s surgery. There is some overlap but they won’t start on her until about the 2/3 mark in my surgery. The tough part for me is going to be waiting to hear how the surgery goes for Candi!

The surgeon echoed what I had heard earlier in terms of recovery times. I should be in the hospital for 2 to 3 days and then will need to recover from home for another 2 weeks. I should be able to work from home after the first week. If I can get completely off the pain killers and the pain isn’t too bad, I may be able to start driving and head back to work before the two week mark. This will certainly be my goal.

My final question for the surgeon was regarding how close of a match Candi and I are. From earlier conversations I had with other personnel from the Transplant Center, I was under the impression that we were a close match but I had never heard for sure. The surgeon wasn’t sure how close a match we were but stated that it really wasn’t that important any more. With recent advances in anti-rejection drugs, donors and recipients no longer need to be a close match (but they do still need to have the same blood type). It is amazing how far we have come medically the past few years!

With all of my questions answered, we moved on to signing some important legal forms. I had to state that I was aware of the risks associated with surgery, that I understood what type of surgery was going to be performed, and that I had ample time to have my questions answered. With that, I was on my way. Just 28 days until transplant!!!

Tuesday, August 17, 2010

Why Donate? A Guest Blog from Candi

This is the first guest blog from my friend Candi who I asked to make a case for why people should consider live kidney donation.

Candi's Story
I'm one of the lucky ones.  Yes, lucky - I have a good friend named Josh who is willing to be a living donor of one of his kidneys for me.  I've been on dialysis for well over 6 years now and although I've done very well on dialysis, I need a transplant.  Not only is being on dialysis inconvenient, but it also greatly increases my chance of getting heart disease and other joint and blood disorders.

Hi, my name is Candi and I have End Stage Renal Disease.  Without dialysis or a transplant, I would die.  Literally. There are two kinds of dialysis - hemodialysis (the one that most people are familiar with) and peritoneal dialysis.  I'm on the second kind of dialysis.  I have a catheter in my stomach and every night I hook up to a machine for 9 hours while the machine performs my dialysis for me.  It doesn't hurt, but after almost 7 years, I'm really tired of it.

I'm also tired of not being able to go swimming or to take a long leisurely bath.  I can take showers, but can't be in "standing" water - it can cause infection of the catheter entrance site.  It also takes me longer to hop in the shower, because I have to anchor my catheter and then clean it a special way after the shower.

Travel is another inconvenience.  When I go somewhere for just a couple of days, I not only have to pack a bag of necessities and a change of clothes, I have to pack my machine (the size of the largest suitcase you can fit in an overhead bin on a plane, with a weight of about 35 pounds), but I also have to take two bags of fluid (each 6000 ml which weigh 25 pounds total) for each night, plus drain bags, dialysis casettes, mini-caps, flexi-caps, masks, 2x2's, 4x4's, tape and about 12 prescriptions.  In other words, I arrive at the hotel looking like I'm either Paris Hilton or that I'm staying for 6 months!  In addition, I also usually have to rearrange the hotel room to accommodate the set-up required for my machine and bags of fluid.

Inconvenience aside, the biggest reason that I hope this all works out is that my risk of heart disease goes up with every year I'm on dialysis.  You see, most people with End Stage Renal Disease don't die from the kidney failure or dialysis; they die from complications to the heart and stress it puts on the body.  There's also a high risk of infection, anemia, electrolyte problems, etc.

I know things won't be perfect once I get a kidney - there will be challenges with the anti-rejection drugs and lots of doctor visits.  But I won't have to be in bed at 9pm (unless I want to!), I'll be able to take a long, leisurely bath, and I'll be able to travel without taking a U-haul.  And, because Josh is giving me a live kidney (vs. a cadaver kidney), my chances of having to go back on dialysis will be very, very low for another 15-20 years.

I've had four people try to give me a kidney - all from my workplace!  The first found out that she has the same disease I have (policystic kidneys), the second person that tried was on a medication that is bad for kidneys, and the third had a blood pressure problem.  The good news is that they all found out about their problems because of the extensive testing they went through to try to donate and are now being treated.  The bad news is that I didn't get a kidney.  I've also been called as a "backup" for kidneys 15+ times now.  I've fasted and waited, but I always got a call that said, "sorry, the kidneys went to somebody ahead of you on the list".  Now Josh has gone through most of his testing and things are looking good so far.  I'm trying very hard not to get too excited until we know for sure (which will be when I wake up from surgery and they tell me the kidney is working!), but I'm starting to believe it's real this time.

Yes, I'm one of the lucky ones.  And even if something happens with our last few tests and I don't get a kidney from Josh, he's still my hero and I'm so lucky to have such a kind, generous friend.

Sunday, August 8, 2010

The Testing - Part II

The second round of testing was a full day (hence the reason this is a VERY long post). I started with a meeting with my “advocate.” Every potential kidney donor is assigned a social worker to act on his or her behalf. The advocate is independent of the process. In my case, this meant that my advocate was a social worker in the Heart and Vascular Institute. She was knowledgeable about kidney donation but not familiar with any of the patients of the kidney Transplant Center and is, thereby, considered independent and better able to focus on my individual situation.

One of the major concerns that the advocates watch for is a potential donor that is being pressured to give. They want to be sure that people are donating for the right reasons and that they won’t regret it down the road. At any time during the process, you can tell your advocate that you do not wish to go forward with the transplant. The advocate will work with the Transplant Center and inform the recipient that the potential donor isn’t able to donate because of a medical reason. Potential donors have this option all the way up until they are put under for the transplant surgery.

My next test was a CT Scan. I had a CT Scan of my head a couple of years ago due to migraines but this CT Scan was far more extensive. In this case, the doctors needed a CT Scan with Contrast which meant pumping some dye into my system to highlight the organs. An IV was placed in my arm and the dye was injected. I had an instant warm feeling flood through my chest as the dye entered my system. I have read that some people are not real fond of CT Scans with Contrast but I thought it was pretty awesome.

I was now ready to be scanned. You lay on a bench that moves in and out of the scanner. The scanner spins around you as it captures the images and relays them to the computer. I didn’t time it, but I was probably scanned for around 15 minutes. I found it to be pretty relaxing.

After my CT Scan, I met with a nutritionist, who discussed my eating habits and emphasized the importance of living a healthy lifestyle after donation. There really aren’t any food restrictions, but it is important to remain healthy and strong to cut down on the chances of any kidney issues. She called me out on two areas that I knew were an issue. The first was my massive intake of Diet Coke (I was drinking 60-80 ounces a day at work – I have replaced that with flavored water) and my sodium intake (still working on that one – I have grown up salting almost everything). The rest of my eating habits were deemed to be okay.

In order to qualify to donate, I needed to be at a healthy weight. This was one area I was a little concerned about as I weighed around 205 pounds. That is not super heavy for a 6 foot male but isn’t exactly skinny either. The nutritionist showed me the chart and the range of weights they would accept for my height and gender went up to about 220 pounds. Ideally, I would have weighed a bit less but it wasn’t a show stopper. I committed to working on my weight before the surgery (that’s a future blog post).

From there I went on to meet with the Transplant Center Social Worker. It is this social worker’s job to determine if I am emotionally mature and responsible enough to make the decision to donate. The fear is that the potential donor is doing so on a whim or is only donating due to pressure from family or friends. The social worker asked about my job situation, family support system, and reason for wanting to donate. She wanted to be sure that I would receive the support at work that I would need with being out for a couple of weeks and then not being able to do heavy lifting for 6 weeks. Fortunately, I have a desk job and my team at work has been nothing but supportive. She asked about each of my family members and their level of support for my decision to donate (you can read the answer to that one in my “The Decision” post). We discussed who would be around after my surgery to help me out. I have a lot of family support so this part was a breeze.

The social worker went on to explain that many people have issues with their self image as a result of the scars from the surgery. I explained that I was more likely to be the guy asking everyone if they wanted to see the scar. She asked if I would feel the need to periodically stop in to see Candi to make sure that she is taking care of my kidney. I figure, once it has left my body, it is Candi’s to do with as she pleases. Of course, it helps that I know that Candi takes good care of herself so this wouldn’t be a concern anyway.

At the end, the social worker had to decide whether or not she felt I was a good candidate for kidney donation. Apparently my nuttiness didn’t come across too strongly because I was deemed a great candidate.

My final stop of the day was to visit a kidney doctor. This was a very helpful visit. The doctor had a chance to review all of my medical test results prior to the visit so this was the moment of truth. I was informed that my kidney was a great match for Candi and that I was in fantastic health. They had found nothing in their tests that would indicate that donation would be a high risk for me or Candi.

The doctor reviewed my medical history form and asked a few questions, but my history is fairly clean so it was a short question and answer period. I was then given the rest of the meeting to ask my questions. The doctor was fantastic and I walked away with a much better understanding of the process and what I could expect. He told me I should anticipate being in the hospital for 2 days after the surgery and then should plan to recuperate at home for another week and a half. Some people need as much as 6 weeks of recovery time before returning to work. However, because my job is in an office environment and I am very healthy going into the surgery, he was optimistic that I would be back to work at the end of the 2 weeks.

The doctor also took the time to explain a little more about dialysis and why live donation is so preferable to a patient receiving a cadaver kidney. He explained more about the surgical process and showed me posters of how it all worked. I was most fascinated with the fact that the recipient doesn’t have either of her kidneys removed. Instead they add the third kidney below one of the failing kidneys. For my part, they will insert a couple of instruments and a camera into small holes in my stomach. They will then deflate (that still boggles my mind) my kidney, play with the wiring, and then remove the kidney through a 2 inch incision just below my belt line. I am not one of those guys who likes to watch the medical channels on TV, but I found this to be pretty cool stuff. Overall, the surgery is fairly straight forward. After meeting with this doctor, I walked out feeling completely confident that I was making the right decision.

My next appointment would be the blood testing that takes place 30 days before surgery. This is the test where we find out if my blood plays nicely with Candi’s blood (as Candi likes to put it). As I understand it, this is where they make sure that Candi doesn’t have any antibodies in her blood that will attack my kidney after the transplant. When I go in for this testing, I will also meet with the surgeon who will perform the surgery. Now for a two month wait.