I'm finding it SO hard to believe that we are just one month away from surgery! We have it scheduled for October 26th. It's so weird...just a few years ago, I thought this was never going to happen. We always talked about the possibility of Matt's kidneys failing, but we thought we were like 20-30 years away from it. And even still, Matt's doctor always said that by the time he needed a transplant, there would be a cure for PKD. So we never worried.
The past couple of months have been crazy. Matt has been home with the kids and putting in some OT at the salon (not really the break he was hoping for!) and I have been working way more than full time. The kids kept Matt pretty busy all summer. He's been trying to take it easy, his energy isn't so great, and he has lots of pain in his abdomen and back. He has been receiving weekly Procrit injections. They increase your red blood count when you are severely anemic. So he's had a little more energy the past few weeks, which has been really nice!
So we are just waiting to receive all of the paperwork from Mass General. Then he will have a million appointments, and lots of blood work done and everything should be good to go! Everything is starting to fall into place....we are working on a schedule for the next 6 weeks, and trying to get everything as planned out with the kids and work as possible. Just can't wait for this to all be behind us!
I'll update as often as I can! And send some good vibes this way! :)
Monday, September 27, 2010
Thursday, August 5, 2010
So sorry...
I need to start off by apologizing for not giving any updates in the past 3 months. It's been a busy and hectic summer. We've had some big and exciting changes in our lives! About 2 months ago, Matt was let go from Fidelity after 10 years. We were very nervous but had been expecting it for several months. Since Matt hadn't been feeling too well, we decided it was a good time for him to stay home and rest a little.
About a week into his unemployment, we got the best news ever! Our friend Dave came to our house one morning and told Matt that he has been going through the testing to donate his kidney. He came over to tell us that he was a match!! We couldn't believe it...it was the most unreal moment, one I will always remember. Dave is a very good childhood friend of Matt's. Him and Matt have stayed very close throughout the years. Until recently, they went to the gym (or lunch haha) everyday together, since they both worked at Fidelity.
Dave had been seeing doctors at Mass General for the past month, and was actually the first person to complete the testing. We never thought we would so lucky as to find a match in the first person. I didn't even think that could be possible. We haven't scheduled anything yet. We are still waiting for the board to approve Dave as a good candidate to make it official. He is compatible with Matt, but they need to make sure that he is healthy and and in good condition to undergo surgery. We should know more in the next week or two, hopefully.
Dave, you really are an amazing person, and words can't possibly express how much you and your family mean to us. You will always be in our hearts.
About a week into his unemployment, we got the best news ever! Our friend Dave came to our house one morning and told Matt that he has been going through the testing to donate his kidney. He came over to tell us that he was a match!! We couldn't believe it...it was the most unreal moment, one I will always remember. Dave is a very good childhood friend of Matt's. Him and Matt have stayed very close throughout the years. Until recently, they went to the gym (or lunch haha) everyday together, since they both worked at Fidelity.
Dave had been seeing doctors at Mass General for the past month, and was actually the first person to complete the testing. We never thought we would so lucky as to find a match in the first person. I didn't even think that could be possible. We haven't scheduled anything yet. We are still waiting for the board to approve Dave as a good candidate to make it official. He is compatible with Matt, but they need to make sure that he is healthy and and in good condition to undergo surgery. We should know more in the next week or two, hopefully.
Dave, you really are an amazing person, and words can't possibly express how much you and your family mean to us. You will always be in our hearts.
Tuesday, May 11, 2010
Visit to the nephro
So we went to Matt's regular nephrologist this past Thursday. Just his usual checkup, But I really wanted matt to tell him how tired he has been feeling lately. He's been getting a lot of attacks of gout, mostly in his foot, although he has been having pains in his knee also. He is getting gout because his kidneys are not flushing enough uric acid from his body. He is already on two medications for it so there is really nothing else that can be done...it's just part of what is going to happen as things progress. He has also been getting lots of muscle cramps/spasms. Again, his doc said this would just continue to happen. From what I have read, it could be because of his low potassium/sodium, but I'm not really sure of the exact cause.
He asked if we had any specific donors lined up and how that was going. We told him that we really aren't sure because everything is supposed to be confidential, but we know some people would like to get tested. He said that he was going to call MGH and see if he could find out how things were going there as far as donors go, because if they don't have any good compatible donors we need to start thinking about putting a fistula in his arm to prepare for dialysis. A fistula is an enlarged vein (usually in your arm), created by connecting an artery directly to a vein. Connecting the artery to the vein creates much greater blood flow into the vein. As a result, the vein enlarges and strengthens, making inserting of needles for hemodialysis treatments easier.
So again, if you would Ike to find out more about being a possible donor, please call Frank Korn at Mass General, 617-643-6513. And if you already know you're blood type, that helps. Matt is a type O, so as of now, that is the type we are looking for.
Thanks for reading!
He asked if we had any specific donors lined up and how that was going. We told him that we really aren't sure because everything is supposed to be confidential, but we know some people would like to get tested. He said that he was going to call MGH and see if he could find out how things were going there as far as donors go, because if they don't have any good compatible donors we need to start thinking about putting a fistula in his arm to prepare for dialysis. A fistula is an enlarged vein (usually in your arm), created by connecting an artery directly to a vein. Connecting the artery to the vein creates much greater blood flow into the vein. As a result, the vein enlarges and strengthens, making inserting of needles for hemodialysis treatments easier.
So again, if you would Ike to find out more about being a possible donor, please call Frank Korn at Mass General, 617-643-6513. And if you already know you're blood type, that helps. Matt is a type O, so as of now, that is the type we are looking for.
Thanks for reading!
Saturday, April 10, 2010
Updated bloodwork and It's official!!
Matt got his results from his bloodwork this past Tuesday. His creatinine went down a little bit, but that tends to happen. We did our own little experiment. I read that your creatinine can go up when you eat a lot of protein...So he didn't eat protein for 2 days and it went down from 6.1 to 5.6. Still high obviously, but interesting. But, he can't eat low protein, because you need to eat protein before a big surgery to avoid infection.
So the other news is that Matt is officially listed on the transplant list. We got the letter the other day. He was listed on April 1st (no joke!). Obviously this is still our last resort...still hoping for a living donor. Kind of a bitter/sweet feeling I guess. But at least we are getting closer...
I also found out that I am probably not going to be a great donor possibility...I was skeptical about donating in the first place, mostly because I am nervous about one of the kids having the disease in the future. But I don't think that is a good enough reason to not go through with it. But I am a B+ and apparently that is a rare blood type. So even if we go through with the paired kidney program, there are not many people that need my blood type. Frustrating....but I will still go ahead and get tested and see what happens....you never know!
So the other news is that Matt is officially listed on the transplant list. We got the letter the other day. He was listed on April 1st (no joke!). Obviously this is still our last resort...still hoping for a living donor. Kind of a bitter/sweet feeling I guess. But at least we are getting closer...
I also found out that I am probably not going to be a great donor possibility...I was skeptical about donating in the first place, mostly because I am nervous about one of the kids having the disease in the future. But I don't think that is a good enough reason to not go through with it. But I am a B+ and apparently that is a rare blood type. So even if we go through with the paired kidney program, there are not many people that need my blood type. Frustrating....but I will still go ahead and get tested and see what happens....you never know!
Wednesday, March 31, 2010
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!
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!
Monday, March 22, 2010
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...
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...
Friday, March 19, 2010
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!
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!
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