Monday, December 29, 2008

Appointment Scheduled for January 2nd

Mark and I hope that everyone enjoyed a wonderful Christmas holiday. We were blessed with a happy, but busy holiday season which has impacted my ability to set aside time to post updates with respect to the transplant! I am scheduled to visit the Transplant Team at UK on Friday-January 2nd. I will complete (and hopefully pass) 3 tests: EKG, ultrasound, and X-ray. It is my understanding that if I am successful in passing these tests, I will have to visit the Transplant Clinic at least 3 more times for additional testing before I am deemed "the donor" and the transplant is scheduled. So, needless to say, we are trying to be patient and positive! I am fearful of getting my hopes up about being the donor and then finding out that I am ruled out. It is sometimes frustrating to think that even after Friday we still won't know for sure if I am selected as the donor. But, when I reflect upon how smoothly things have gone thus far, I can't help but be thankful for how God has worked in our lives. We have read about other transplant patients who have waited years to get to the point where we are now. We keep reminding each other that God is in control of this situation and will guide the Transplant Team to His choice for the donor. I really can't express how badly I want to be selected as the donor, but ultimately I want God's will to be done (even if it doesn't match my personal thoughts of what would be best for my family). As always, thanks to everyone for your thoughts and prayers. I understand it is difficult to know what to say in times like this, but please know that your words of encouragement are greatly appreciated and mean so much to us.

Tuesday, December 16, 2008

Testing is scheduled to continue

Mark and I spoke with the Living Donor Nurse Coordinator yesterday and she agrees with our decision that I should proceed with testing!!!!!! I was so relieved to hear her say that she thought I'd be a good candidate to continue with the testing. She is a little "hard to read" at times. I was fearful that she would disagree with our decision.

I had hoped to complete the testing sometime over my Christmas break. While she said it would be nearly impossible to schedule the testing for next week, she thought January 2nd was a possibility. So, we're keeping our fingers crossed that January 2nd will work out due to the fact that I won't have to use any of my remaining sick days to travel to Lexington on the 2nd. I'm not exactly sure what testing UK requires for potential donors. We've read that other clinics require an EKG, ultrasound of the abdomen, stress test, x-ray, 24 hour urinalysis, and additional blood work. Some clinics also require a renal angiogram (a test that involves use of a dye in the blood stream to examine the kidney). I'm just so excited about the prospect of donating that I'm really not concerned about the testing. I just hope that I can "pass" all of the tests. If not, I could be ruled out as a donor and another of the top three donors would then continue with the same testing.

As always, please continue praying for us. Thank you for the thoughtful emails, comments, and cards. We especially want to thank all of the people from Gardendale's First Baptist Church for their cards and emails. It means so much to us that Roy and Kelly have such thoughtful people in their lives.

Friday, December 12, 2008

An Early Christmas Gift: All Negative Crossmatches!

Today we received wonderful news from the transplant team! All three potential donors were "negative crossmatches!" In other words, the results of the blood work completed on Monday indicated that Justin, Carma, or I could serve as a donor for Mark. At this point, only one donor will proceed with the additional testing that is required to determine if he or she is healthy enough to donate. The transplant team has asked Mark and I to think about who we think should donate and respond to them with our choice on Monday. At that point, they go over the results of the testing and our input to decide who they think should continue with the testing.

It is an easy decision for me...I really think that I should be the donor! I am actually really excited about the prospect of giving my husband a kidney. I have spent a great deal of time thinking and praying about the situation and honestly have a very peaceful and good feeling. I have felt like I would be the donor for several weeks. I don't have any reservations at all about donating. Mark and I are blessed with a wonderful family who could help us during recovery and could help with caring for Mark Thomas.

While I can't express my gratitude to Carma and Justin for their willingness to help, I do not want to involve either one of them in the process if I am able to donate. As a mother, I just can't consider putting another mother's son or another family's mother in jeopardy. Carma, Justin, and all of the other loved ones who have offered to donate have taught us an unbelievable lesson about fearlessly trusting God and unselfishly giving to others.

We are continuing to pray for God's guidance and want to praise Him for this wonderful news!!!!!!! Hopefully, the transplant team will agree with our choice and I can complete the additional testing over the holiday break.

Monday, December 8, 2008

Testing of Three Potential Donors is complete!

Today we visited UK's transplant clinic for testing of top three potential candidates. Justin, Carma, and I completed lab work and met with the living donor nurse coordinator separately and as a group. The nurse was very kind. She informed us of the risks involved with donating. She also told us that we should know by the end of the week or beginning of next week if one or more of us is not ruled out and eligible to continue with the testing.

I had asked her if we would have any input into who was chosen as the donor if all three candidates were equally compatible with Mark's blood and tissue type. I may be thinking too far ahead, but I was happy to know that we will have some input into the decision making process.

We also found out that if one of us is selected as the donor, the surgery will probably occur in late January or early February. I guess there is still a great deal of testing to be conducted with the donor and with Mark.

Although today's visit was not as lengthy and involved as past visits, it was emotional and an unique experience to say the least. We see Mark's Aunt Carma and her husband-Mike-quite often when they visit Harlan. But, seeing them walk into the clinic created a different feeling. Since I've known Mark, I've always admired Carma's loving and gentle spirit. She has a way of making you feel at home and comfortable. She did the same today.

I can't express how it felt to meet Justin. When he walked into the clinic, I almost cried. I can't imagine being 18 years old and willing to donate a kidney to someone I barely know. He is such an amazing young man. His compassion and kindness is both admirable and amazing. I am honestly in awe of his thoughtfulness for others. My prayer is that one day Mark Thomas will grow to be as compassionate and kind as Justin.

Please keep praying for us! We will find out soon if one of us can donate to Mark!

Saturday, December 6, 2008

Words of Encouragement

Mark and I have really been encouraged by several sermons, scripture, and songs we've heard recently. We are really enjoying our new pastor, Brandon Pugh. His recent sermons have really been applicable to our life. These messages-along with other scriptures-have served as a source of encouragement for us. Like I mentioned above, several songs have also helped lift our spirits in this difficult time. In fact, I told Mark last night that two songs in particular could be our "theme songs" for life right now. I wanted to pass the encouragement on to you:

Brandon's Sermon
Two weeks ago, Brandon was preaching on the reasons why Christians face trials and afflictions. His sermon came from Proverbs. I'm not too good at remembering every scripture that supported the message, but I do know the "take home message" or main point. Brandon used scripture to provide several reasons why Christians are afflicted. He mentioned that God often uses hardships to bring His children closer to Him. So, given that trials are used to draw you closer to God, Brandon challenged us to think about the affliction itself as an "act of love from God" or a gift. He challenged us to be thankful for the trial. So....we are now attempting to assume this attitude! We are trying (though not successful at every moment) to be thankful for Mark's kidney situation. We have talked about how there are several things to be thankful for related to his health (i.e. he has no other health problems that would jeopardize his candidacy for transplantation, we have good insurance and jobs, God has blessed us with a strong marriage, etc.) We remain firm in the belief that God's plan for our lives is a perfect and good plan.

"For I know the plans I have for you," says the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
This has always been a favorite verse. Roy shared it with me when I was in his youth group. Mom reminded me of it several weeks ago. It continues to offer encouragement to our family.

Our Theme Songs
There is no way that I can verbalize the meaning of the two songs we've labeled as our "theme songs." are the links videos on YouTube. Hope you enjoy!
"While I'm Waiting" by John Waller:
"Praise You in the Storm" by Casting Crowns:

Please pray for us on Monday as three potential donors are tested at UK!

Sunday, November 30, 2008

A True Thanksgiving Blessing: Living Donors

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!

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.


Thursday, October 23, 2008

Encouragement from a praise song

I was traveling back from UK last night listening to some "oldies but goodies" in praise music. Some of you may remember "Life, Love and Other Mysteries" by Point of Grace. The second verse and chorus of the song seem really applicable to our situation and offered some encouragement to me. I wanted to share it with you:

"When it seems that my heart is surrounded
and all of my questions of life have been sounded
I'll rest in the hope where my faith has been grounded
I will not fear the unknown.
You are Lord of life, love, and other mysteries
You know my future, you know my history
I find in You all I ever need to know
About life, and love, and other mysteries"

Mark's transplant is undoubtedly a mystery to us right now. It seems like we have so many unanswered questions-where to have the surgery, when it will take place, how to decide what physician is the best, etc. But, like the song expresses, it is so comforting to know that God knows both our past and our future. It is a blessing to be able to truly "rest in the hope where our faith has been grounded."

Monday, October 20, 2008

Report from the Patient Education Group

Thanks so much for all of the positive responses we've received from everyone about the blog. But most importantly...thanks for the concern and prayers for Mark. We are adapting to the news slowly, but surely. We are holding tightly to God's promise that He will not place anything on us that we cannot handle without Him! We also believe that God's plan for us is a perfect plan (despite how we may feel at the moment)!

Last week, Rhonda, Larry, Mark, Mark Thomas and I attended a patient education group in Lexington. The focus of the group was mainly on dialysis, but we received a lot of additional information as well. We were able to speak with a Dietitian, Social Worker, and Nurse. We had received mixed opinions from our Nephrologists with respect to dialysis in the sense that some of the Nephrologists in the practice assured us that Mark would never need dialysis, while others have mentioned that he may have to have dialysis. After attending the education group, we can kind of understand these mixed signals a little better. The nurse informed us that the ideal situation is for Mark to receive his transplant before he ever needs dialysis. She also told us that while this is ideal, it isn't always possible. In other words, if we are still in the process of finding a living donor or a donor from a cadaver when Mark's kidney function gets to the point of being too harmful, Mark would have to go through dialysis. However, unlike many patients with end stage kidney disease, Mark's dialysis would be a temporary fix until he received the transplant.

The good news about dialysis is that there are two types that allow the patient a little more freedom in choosing which option works best with their lifestyle. One is known as "hemodialysis" and uses the blood, while the other known as "peritoneal" dialysis uses the peritoneal cavity. Although hemodialysis typically involves going to a dialysis clinic (usually 3 times per week, 4 hours per visit), peritoneal dialysis can be done at home while you are sleeping. This is the option Mark is considering the most. (I'll post more information about dialysis at a later time.)

Although our conversation with the Dietitian at the patient education group was brief, she did direct us to several useful websites and gave us a great cookbook that has really been a lifesaver! Mark's diet has been restricted in hopes of "lessening the load" on his kidneys. We are restricting sodium, phosphorus, potassium, protein, and cholesterol. Needless to say, it is quite a challenge to balance all of these restrictions. We've found that foods that are low in one area may be high in other areas. I guess it is a good thing that we live in Harlan where we are not tempted by lots of different choices in restaurants! I'll have to brag on Mark's dedication to his diet. He is being very mindful of what he is eating and has been exercising more regularly. He has already lost 9 pounds. He looks even more handsome than usual!

That's all for now...Thanks again for your thoughts and prayers. They mean more than you know! If you find any low sodium, low potassium, low phosphorus, low cholesterol recipes, please send them our way!

Saturday, October 11, 2008

A little background info...

Mark and I thought it may be helpful to give a little background information about Mark's health and some more specific information about his disease-IgA Nephropathy. Some of the information is a little discouraging-so the lighten the mood of the post-I am posting a picture of Mark Thomas!!!!

Diagnosed in 1998: We discovered Mark had IgA in an unusual way to say the least! At the time, Mark was working for UPS. He had a terrible ingrown toenail and had gone to a physician in Harlan to get it removed. Before the doctor began the procedure, the nurse who was checking his blood pressure happened to comment to Mark that his blood pressure was really high. She dismissed it as him being nervous about the removal of the toenail. The next week when Mark was delivering a package to a local doctor's office, he told the nurse about his blood pressure being high. She decided to check his blood pressure and was shocked to discover that it was still very high. She immediately scheduled him to see the doctor. This started the ball rolling and a couple of months later we were seeing our current Nephrologists who performed a kidney biopsy and diagnosed Mark with IgA.

1998 to 2008: As we mentioned in an earlier post, for the past ten years, Mark has been living pretty normally with IgA. In fact, people often find it hard to believe that Mark has a kidney disease! Mark appears very healthy and is very lucky in the sense that IgA hasn't caused any discomfort thus far.

We have been visiting his Nephrologists every 3 to 6 months (depending upon how well he is feeling) and an Endocrinologist every 12 months who have monitored his health. Because IgA is a progressive kidney disease, there is nothing that the doctors can do to reverse his condition. It is our understanding that they can control things like his blood pressure and diet to help preserve the kidney function that he possesses.

When Mark was first diagnosed with IgA, the doctors estimated that he possessed 41% kidney functioning. After ten years, our most current estimation is that he possesses 18% kidney functioning. Typically, when a patient reaches 15% kidney function, he or she receives a transplant. However, it is not an exact science. In other words, we can't assume that Mark will need a transplant the minute he reaches 15 % functioning. Our nephrologist mentioned that some people who have 18% kidney function are already on dialysis and some may have already received a transplant. The fact that Mark is tolerating the presence of his disease is really encouraging. To be honest, we don't really understand a lot of transplant process. Hopefully, we will learn more soon and will be able to post additional information.

IgA nephropathy: As we mentioned, IgA is a autoimmune kidney disease. It is also referred to as "Berger's disease" or "IgA nephritis." Basically, IgA causes protein to be deposited and trapped in the kidneys. This can lead to inflammation and scarring in the kidney. The cause of IgA is unknown and there is not a "cure" at present. A transplant is a treatment not a cure for IgA. In other words, even when Mark receives a new kidney, he will still have IgA and his body will continue depositing protein in the new kidney.

I am posting the links to two websites that have been helpful for us. As we learn more about IgA, I will definitely share it on the blog.

Wednesday, October 8, 2008

Why Blog?

As many of you know, Mark was diagnosed with IgA nephropathy, an auto-immune kidney disease, in 1998. For the past ten years, Mark's Nephrologists have been monitoring his kidney function and we have been doing our best to live life as usual. We have known all along that Mark would one day need a kidney transplant. However, it wasn't until yesterday at his 4 month check-up, that we faced the realization that his transplant would more than likely occur sometime soon (i.e. within a year). So, it seems that our journey to a kidney transplant has officially begun!

Several of you have already expressed interest in being kept informed of Mark's progress. So, we decided to create a web log for the purpose of keeping everyone "in the loop." We also hope that our blog may lead to us networking with other families who are going through similar experiences. As you check our blog for updates about Mark, please remember to also pray for our family. We will undoubtedly be reliant upon your prayers and God's guidance as we begin this journey!