More about the donation process

I've had a lot of people asking questions about the donation process (which I am SOOOO thrilled about), so I figured I would dedicate this next post to just that. I will try to make this as simple as I can...it can get quite confusing..

So basically, there are three things that need to match up; blood type, tissue type, and a cross match.
Blood type O is the universal donor...they can donate to anyone. However, they can only receive from a type O. Matt is a type O. The next step would be tissue matching. All people have antigens which makes up their genetic profile. There are 6 specific antigens that they look for to match a kidney donor to a recipient. The more antigens that match up, the better the success of the transplant. It is not necessary for all six antigens to match up, however, because they have come so far with the immunosuppressive medications (those are medications that Matt will be on for the rest of his life, that will weaken his immune system, so that his body will not reject the transplanted kidney). The last matching process is a crossmatch. It is a mixing of cells and serum to determine whether a transplant will be successful or not. This has come a long way in just the past couple of years. When mixing, you either get a positive result or a negative one. If a positive result occurs, the transplant will not be successful and the body will reject the kidney. With a negative result, no reaction occurs and the transplant should be ok.
Obviously, I am not a doctor, and this is very basic information that I am trying to relay to everyone as simply as possible.

Now, just to make this even more confusing....we don't need an EXACT matching donor. There are programs now throughout the country where you can swap donors. So, for example...

Person 1 wants to donate a kidney to Person 2. And Person 3 wants to donate a kidney to Person 4. However, neither of them are a match. BUT....Person 1 matches Person 4 and Person 3 matches Person 2 so they swap donors and both Person 2 and Person 4 receive matching kidneys from strangers. Did I lose you?? (I'm better when I can talk with my hands...)

This system is making it possible for more and more people to receive kidney transplants that would otherwise not take place. Pretty amazing (thanks to modern technology)!!

So, really, we don't necessarily need a matching donor, just a willing, healthy one.

And of course, you can email or call me with any questions mrsbonica26@gmail.com or 978-580-1383. Or if you wish to call Mass General directly and talk with them about any donation questions, contact Frank Korn at 617-643-6513.

Thanks again for reading!

Bad bloodwork...

Matt just got his blood results from last week. His creatinine went from 4.6 to 6.1. Not good news...
I don't understand how this is happening so quickly! He's been doing so well with his weight and his diet, I thought it would have slowed things down. We haven't talked to the doctor about it yet, since we just found out this morning, but I think this puts him pretty close to dialysis, from what I have read online.
Not a good morning...

Starting the donor search

Although we're still waiting to meet with the cardiologist, they have given us the go ahead to start our donor search! Matt has now lost about 24 pounds and is feeling great (watch out ladies, he's all mine!!). He's been working out with a trainer a few days a week, and sticking to a pretty strict diet. He has to eat a low potassium, low sodium diet until the transplant. I didn't think it was going to be too difficult until I realized that potassium is basically in all your healthy foods. Fruits, vegetables, wholegrain pastas and breads, beans and nuts are all very high in potassium. So you can imagine how hard it is to eliminate all those foods from your diet and still lose weight! And then no salt on top of it all....bascially, dinner at our house lately tastes like cardboard! Regardless, he has been sticking to it, and it's working.....and luckily, he will be able to eat normal again post transplant.

So, there are 2 different ways to receive a new kidney. There are deceased donors and there are living donors. They are pretty self-explanatory, but there are some major differences between the two. When a deceased donor kidney is transplanted, it doesn't always work right away. Many times, the recipient needs to go on dialysis until the kidney starts working. With a living donor, the transplant is more successful, tends to last longer, and should work immediately. They also have more time with living donors, to thoroughly test the kidney to make sure it is a perfect match. With deceased donors, the time between the death and the transplant may weaken the kidney. So with good reason, our goal is to find a living donor.

Here is a link to the National Kidney Foundation Q&A site for people who are interested in donating: http://www.kidney.org/transplantation/livingdonors/infoQA.cfm
The information on this website is very generic and gives a basic overview of the process.

However, if you would like more detailed information, we encourage you to call the transplant team at Mass General. They prefer potential donors contact them directly, rather than have us relay information for confidentiality purposes. Being an organ donor is a huge decision and should not be taken lightly. The transplant team is not only there for Matt, and our family, but also for potential donors and their families. You can call them just to get information, it doesn't mean you are signing up for anything. You can also change your mind at ANY point during the process. Everything is confidential. We do not know anything until the time that the donor decides to tell us they would like to donate. (The website I provided says differently, but Mass General told us that it is completely up to the donor when they would like to inform us of their decision. We won't even know if someone makes a phone call.)

If you or someone you know is interested in more information about getting tested please contact Frank Korn at Mass General. He is a transplant coordinator who deals only with donors. His number is 617-643-6513.

The testing process can be lengthy. It can take several months for all the testing to be completed and they will only test 1 or 2 people at a time. When all is said and done, you will have had a very thorough exam and hopefully find that you have a clean bill of health.

If anyone has any other questions that I might be able to help with, feel free to email me anytime, mrsbonica26@gmail.com

Thanks for reading!

Yesterday's appointment

So now that we are caught up...
Matt has lost 17 pounds since his last appointment with the nephrologist. We just went to the doctor yesterday and had a pretty decent visit! She's kind of a tough doctor. She scared the crap out of us at Matt's first visit. She just walked in and laid down the law, "you lose 25-50 pounds or you dont have the surgery" and that was that. We left there and all I could think was, "holy shit. Matt and I have been on diets since we met! How are we going to do this?"
So, now that I think about it...Maybe tough doctors are a good thing, because they set you straight...

So she was PSYCHED that Matt had already lost that much weight. She was like "you reeeally want this kidney, don't you?"
They actually lowered one of his blood pressure medications a little because of the weight loss...another plus!

We also found out Matt's blood type. He is type O. Not exactly the best type to have in his situation. O is the universal donor. You can donate to anyone, but you can only recieve from another O.

We are still one step away from Matt getting onto the donor list. He has to go see and get clearance from a cardiologist. We dont have that appointment yet.

Once that appt. is done, we find out if Matt has been accepted into the kidney transplant program at Mass General. He's healthy other than the PKD, so I'm sure he'll be accepted. Once he is accepted, he will be put on the list. I'll talk more about that, when I know more about it!

Getting ready for a transplant.

This past summer, Matt's nephrologist said that it was time to begin the transplant process. We originally thought the transplant would be a few years from now, but it turns out that he is only about a year away from it.
We decided to go ahead with the dr's recommendation and do the transplant at Mass General. So we had our first appointment there on December 9th, 2009. It was a very overwhelming day. First, you have to go through an orientation where they educate you on the whole process. Information overload! Then, we met individually with the nephrologist, the surgeon, a transplant coordinator, a financial coordinator, a social worker, and a dietician.

They all gave a brief overview of how things work and what we need to be doing in the meantime. Everything was fine with the financial coordinator, because we have insurance to cover everything. But she needed to make us aware of all the out-of-pocket costs.
The social worker was there to help identify our support network and to talk about any possible stresses that could hinder Matt's condition (is she serious?! This whole experience is stressful!)
The transplant coordinator helps make the whole process run smoothly. They organize all your appointments and let you know what you need to do and when.
The dietician, surgeon, and nephrologist were all a little more eye opening. We went over all the numbers and how important it is for Matt to keep his weight down. The nephrologist said they won't even do the surgery until he loses 25-50 pounds. After the surgery, Matt will be on steroids for the rest of his life that could make him gain weight, so it is necessary for him to lose weight prior to the surgery.

Welcome

I'm writing this blog about my husband, Matt, and his struggle with polycystic kidney disease. I'm going to try to fill in information about the disease itself, as well as give information to friends, family and acquaintances who would like to stay updated with his situation.
Even though it is now March, Matt's kidney issues started getting bad this past summer, 2009.

Matt will be 33 this May. He was first diagnosed with PKD when he was about 23. His mother, and other family members also had the disease. MaryAnn, Matt's mother, just passed away this past December after a long fight with PKD. The following information about PKD is from http://www.pkdcure.org/:

Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined.

Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment.

PKD comes in two forms. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common, affecting 1-in-400 to 1-in-500 adults. Autosomal Recessive Polycystic Kidney Disease (ARPKD) is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children.

Matt was diagnosed with the autosomal dominant variety of PKD. That means that there is a fifty percent chance of passing the disease on to each of our kids, Vince and Andre. Once Matt learned he had the disease, he started seeing his nephrologist (kidney doctor) on a regular basis. They did regular blood checks and monitored him over the past 10 years.

The most common problem for kidney disease patients is high blood pressure. Matt has been on blood pressure medication for a long time. He has also has frequent attacks of gout, where his foot just cramps up causing tremendous pain. The doctor checks his creatinine levels in his blood. A normal person's creatinine level is around 1.0. Matt's is now about 4.8. As your kidney function decreases, your creatinine level increases. When your kidney function goes below 20% you start the process of transplantation. If your function drops below 10%, you need to begin dialysis. Matt's kidney function is about 15% right now. So we are beginning the process of getting Matt a new kidney.