We hope everyone enjoyed a wonderful Thanksgiving!!! One of the blessings that Mark and I are especially thankful for this year is all of you who have offered to become Mark's living donor!!! The living donor nurse coordinator at UK commented that Mark must be a special person because they have never had so many phone calls from individuals wishing to donate to a patient in such a short period of time. So, once again, thanks to everyone who has expressed interest in donating.
About ten of our family members and friends have inquired about becoming Mark's living donor. Unfortunately, several of those individuals were ruled out due to having an incompatible blood type or health condition (i.e. high blood pressure, autoimmune disease, etc.) that makes donating too risky. I cannot express how fortunate Mark and I feel that so many of you were willing to literally give a part of yourself to Mark. Even though several of you were ruled out, we will always be grateful for your willingness to help.
We found out last week that three family members/friends who were deemed to be the "best potential candidates" are scheduled to go to the transplant clinic on December 8th for additional testing. The three candidates are me, Mark's Aunt Carma, and Justin White (the son of one of Mark's co-workers). As we understand it, three tests will be completed using a blood sample from each potential donor: blood typing, HLA crossmatching, and tissue typing. Blood typing will be completed to double check each potential donor's blood type. (Mark's blood type is A positive; Carma and I both have type A blood; Justin has O; So, this should work out okay). During the HLA crossmatch, each donor's blood will be mixed with Mark's blood to check for the presence of preformed antibodies. Antibodies are produced by the immune system to help the body fight infection and foreign substances. If antibodies are present, they can harm the donated kidney. Thus, a "positive crossmatch" prevents a transplant from the potential donor, while a "negative crossmatch" is a predictor of a successful transplant. Finally, tissue typing is completed using the white cells found in blood.
After the testing is completed, if one of the potential donors is found to be both blood type and HLA crossmatch compatible, the donor evaluation process continues (i.e. chest x-rays, EKG, psychosocial evaluation, Spiral CT, etc.). If Carma, Justin, or I are not compatible, additional family members that were deemed in the "top tier" of Mark's potential donors will go in for the three tests described above. We are unsure of how many people are in the top tier-we know my Mom is in the top tier. If none of Mark's potential donors are compatible, he will wait for a kidney from the deceased donor waiting list.
So...please join us in praying for God's continued Guidance, Peace, and a compatible donor!
Sunday, November 30, 2008
Thursday, November 6, 2008
Initial Visit with UK's Transplant Team
Today Mark had his initial visit with the transplant team at the University of Kentucky Medical Center. It has been a long-but very informative and surprisingly optimistic-day. When patients are referred for transplantation by their nephrologist, the initial step is meeting with the transplant team (transplant surgeon, nurses, nurse coordinator, social worker, dietitian). The initial visit includes a great deal of testing (blood and urine analysis, X-ray of chest, ultrasound of abdomen, EKG, etc.) that is completed to determine if indeed a patient is a good candidate for transplantation. After candidacy is determined, the patient is then placed on the waiting list for a cadaveric donor and the search for a living donor begins. This is basically what happened to Mark today.
We were very impressed with the entire transplant team. We especially liked one of the surgeons, Dr. Roberto Gedaly. He had great bedside manner and seemed very down to earth. Dr. Gedaly even maintained his patience with me when I literally asked about 25 different questions! Mark also really liked the nurses who cared for him today. Today was "kidney day" so we had the opportunity to speak with two patients who had already received a transplant. They both had good things to say about UK. I think our overall impression about the transplant clinic at UK was very positive. When I asked Mark what he thought about the UK transplant clinic, he said, "I like it, I'm very pleased. I could go ahead and use this facility without going anywhere else." We have been praying that God would guide us in our pursuit of finding the transplant team that we should use. I felt very comfortable with the UK transplant team. At present, we are thinking that if we find a living donor, we may choose UK as the team. However, if we cannot find a living donor and need to use a kidney from a cadaver, we will definitely visit other clinics to allow us to be placed on the waiting list at several facilities. This is called "multiple listing." (I'll explain it in a later post).
Dr. Gedaly really emphasized the importance of finding a living donor if at all possible. He mentioned that the outcomes for patients receiving an organ from a living donor are much better than transplantation of an organ from a cadaver. He also stressed the importance of having the transplant as soon as possible. We are hoping to avoid Mark ever needing dialysis. As we mentioned in an earlier post, if Mark's kidney function worsens to a point of being dangerous before a donor is found or before we find one through the waiting list, he would have to go on dialysis. Transplantation outcomes for patients who have never had dialysis are also better than outcomes for patients who have had dialysis. So...our main focus now is finding a living donor!
In an effort to organize all the information and insight we gained today, I am going to post some of our questions to the transplant team and paraphrase their responses.
Do we have any choices other than transplantation?
The only other choice is dialysis. In other words, we have to do something to make Mark's kidney function better.
Would you recommend further testing to ensure Mark was accurately diagnosed or do you feel confident in his diagnosis?
Mark was diagnosed through a kidney biopsy. Although it was several years ago, doing another biopsy or testing is unnecessary. Completing another biopsy would place his kidneys at risk. All of Mark's blood work and urine analysis indicate that his kidneys are failing. This serves as evidence that his diagnosis is accurate. The focus at this point isn't why his kidneys are failing-it is what can we do about to make it better.
Is there a maximum number of transplants that patients receive in a lifetime? If so, is there any advantage to waiting before transplantation (especially considering that Mark feels well and more and more research is being conducted each year on how to improve kidney functioning)?
We have done up to 3 for one patient. There isn't a "set" number of transplants. However, it is important to understand that the likelihood for rejection would be greater for the patient with each transplant. Waiting would not be the best situation for a number of reasons. Right now, Mark only has one major health problem. The longer we wait the more time he has to develop other issues which may compromise his candidacy for transplantation and may make the transplant more difficult. In addition, waiting could mean he may need dialysis which can also make transplantation more difficult.
When will we know Mark's status for candidacy?
Our team meets each week, but I (Dr. Gedaly) can tell you that in my opinion he is a perfect candidate for transplantation. I don't see any problem recommending him for a transplant.
What is the average hospital stay after the transplant?
4 to 10 days for the patient, 2 to 3 days for the donor
What follow up care is required after being discharged?
Typically, patients visit the transplant clinic twice a week for 6 weeks, then 1 time a week for 6 weeks, then once a month, then they alternate seeing their nephrologist and transplant team, and if all goes well they end up seeing only the nephrologist
What is Mark's blood type?
A positive; this means that someone with A or O blood types could be a potential donor
I guess that is all for now. We learned so much today-it is difficult to post it all. I'll try to post more information about our visit, the transplant process, and living donors sometime soon. As always, Mark and I are thankful for your thoughts and prayers. It gives us great peace to know that so many of you are thinking of us.
Kellie
We were very impressed with the entire transplant team. We especially liked one of the surgeons, Dr. Roberto Gedaly. He had great bedside manner and seemed very down to earth. Dr. Gedaly even maintained his patience with me when I literally asked about 25 different questions! Mark also really liked the nurses who cared for him today. Today was "kidney day" so we had the opportunity to speak with two patients who had already received a transplant. They both had good things to say about UK. I think our overall impression about the transplant clinic at UK was very positive. When I asked Mark what he thought about the UK transplant clinic, he said, "I like it, I'm very pleased. I could go ahead and use this facility without going anywhere else." We have been praying that God would guide us in our pursuit of finding the transplant team that we should use. I felt very comfortable with the UK transplant team. At present, we are thinking that if we find a living donor, we may choose UK as the team. However, if we cannot find a living donor and need to use a kidney from a cadaver, we will definitely visit other clinics to allow us to be placed on the waiting list at several facilities. This is called "multiple listing." (I'll explain it in a later post).
Dr. Gedaly really emphasized the importance of finding a living donor if at all possible. He mentioned that the outcomes for patients receiving an organ from a living donor are much better than transplantation of an organ from a cadaver. He also stressed the importance of having the transplant as soon as possible. We are hoping to avoid Mark ever needing dialysis. As we mentioned in an earlier post, if Mark's kidney function worsens to a point of being dangerous before a donor is found or before we find one through the waiting list, he would have to go on dialysis. Transplantation outcomes for patients who have never had dialysis are also better than outcomes for patients who have had dialysis. So...our main focus now is finding a living donor!
In an effort to organize all the information and insight we gained today, I am going to post some of our questions to the transplant team and paraphrase their responses.
Do we have any choices other than transplantation?
The only other choice is dialysis. In other words, we have to do something to make Mark's kidney function better.
Would you recommend further testing to ensure Mark was accurately diagnosed or do you feel confident in his diagnosis?
Mark was diagnosed through a kidney biopsy. Although it was several years ago, doing another biopsy or testing is unnecessary. Completing another biopsy would place his kidneys at risk. All of Mark's blood work and urine analysis indicate that his kidneys are failing. This serves as evidence that his diagnosis is accurate. The focus at this point isn't why his kidneys are failing-it is what can we do about to make it better.
Is there a maximum number of transplants that patients receive in a lifetime? If so, is there any advantage to waiting before transplantation (especially considering that Mark feels well and more and more research is being conducted each year on how to improve kidney functioning)?
We have done up to 3 for one patient. There isn't a "set" number of transplants. However, it is important to understand that the likelihood for rejection would be greater for the patient with each transplant. Waiting would not be the best situation for a number of reasons. Right now, Mark only has one major health problem. The longer we wait the more time he has to develop other issues which may compromise his candidacy for transplantation and may make the transplant more difficult. In addition, waiting could mean he may need dialysis which can also make transplantation more difficult.
When will we know Mark's status for candidacy?
Our team meets each week, but I (Dr. Gedaly) can tell you that in my opinion he is a perfect candidate for transplantation. I don't see any problem recommending him for a transplant.
What is the average hospital stay after the transplant?
4 to 10 days for the patient, 2 to 3 days for the donor
What follow up care is required after being discharged?
Typically, patients visit the transplant clinic twice a week for 6 weeks, then 1 time a week for 6 weeks, then once a month, then they alternate seeing their nephrologist and transplant team, and if all goes well they end up seeing only the nephrologist
What is Mark's blood type?
A positive; this means that someone with A or O blood types could be a potential donor
I guess that is all for now. We learned so much today-it is difficult to post it all. I'll try to post more information about our visit, the transplant process, and living donors sometime soon. As always, Mark and I are thankful for your thoughts and prayers. It gives us great peace to know that so many of you are thinking of us.
Kellie
Subscribe to:
Posts (Atom)
