Anniversary Clinic Visit

My kidney numbers continue to report that all is well. Unfortunately due to genetics and family history, my heart now needs attention. I have had a loud heart murmur for years. Many echocardieograms have been done to keep an eye on the beginning of aortic stenosis. It was very mild the last time I was evaluated for my transplant so there was no concern about having to deal with the heart before the transplant. Back in November I went in for my 6 month heart check up with another echo performed. It was said that I was now looking at an aortic valve replacement alot sooner than anticipated. Since I wasn't having any symptoms, I was to closely watch and make sure I didn't run out of breath easily or wake up out of breath, have chest pains, dizziness and some other symptoms. They would follow up with me in 6 months and would eventually need to do a transesphogeal echo. This where a scope is run down your throat and they take internal pictures of the back of the heart. I was training with the SARTEC team and doing the most complicated problem to date and the greatest distance hiking. I started getting winded but I thought, "Well, this is the longest you've ever hiked." As the training exercise continued it became harder for me to catch my breath. After about 3 days my breathing returned to normal. OK, it's time to call my heart specialist. He asked me about what was going on and I explained to him the different things. Some had been happening before but I never paid attention to them. He told me he thought I had prolly had symptoms but never associated them with the heart but to the recovery of the transplant. Since UAB had done the transplant, he wished for the heart guys there to do a heart catherization and the aorta valve replacement. That way the transplant team could ensure the best care of my new kidney. When they do a heart catherization a dye is used for contrast to take pictures. This dye poses a great threat to the new kidney. In some, it can temporarily impair the kidney. In others, it wipes out the kidney completely. My transplant doctor said that I would be going into the procedure with a very healthy kidney so I had that going for me. And I said that means I have that much to lose if I'm one of the people it wipes out completely. He agreed and said he hadn't wanted to state that but had thought it. There are some precautionary measures that can help but I'm at risk because I'm a diabetic AND a transplanted kidney. I have an appt with the heart cath doctor on 3/11 and the procedure date will be determined then. Basically at this time, my aorta valve is only half the size it should be and only pumping at about 25%. The renal doctor said, "Since you're going to become a member of the zipper chest club. Let's get anything else done that needs it while they're in there, including any bypasses." Looking at the future of a transplant was a lot easier than what I'm going through now. This situation is not due to my diabetes or kidney damage. My mother apparently had this same issue but chose to never do anything about it. I don't have a choice.While this is a genetic issue, the other issues complicate it greatly. I am to remain calm and not exhert myself which means a temporary sabbitcal from Search and Rescue training. Once again my kids are faced with uncertainity about their Mom. That's what really bothers me, how will my boys be affected by yet another medical issue with Mom? God has not brought me this far to just let me go. I'm just such a big sissy when it comes to needles and pain and everything that has been explained to me is frightening.

Glenn Beck's Principals of Life 6. I have a right to life, liberty and pursuit of happiness, but there is no guarantee of equal results

Ok folks, I'm going to step on toes here but not because I want to, it's because I have an opinion and most time when people state their opinions, others oppose it. So here goes.......The title of the post sums what has come across my path in the last week. I went today to my transplant clinic for my anniversary check up. While in the waiting room I overheard a conversation between a couple of people who had received transplants about 2 -3 years ago. They were discussing how unfair it was that people who had only done about 6 months of dialysis were receiving kidneys, when they themselves had done dialysis for 6 - 7 years! Come on folks! I am truly sorry that people have to go through dialysis and I'm sure it does seem unfair but don't begrudge the people who have minimal time or none at all on dialysis!! Research shows people are much better off after a transplant if they haven't gone through the rigors of dialysis. No, not everyone is lucky enough to dodge this but I'm sorry, I have never witnessed such selfishness in my life!! And the organizations who are pushing to have their members get preference over others on the waiting list, I'm sorry but that is just wrong on so many levels. Bottom line it's discrimination. Because someone hasn't had the forsight to sign up doesn't mean they should be penalized. Who gets which organ is regulated by the Federal Govt. If you designate you only want someone to receive your organs if they are on some list, what's not to say that people can only donate to Hispanics, Asians, African Americans or Caucasians????? There are doctors who believe in only referring their patients after dialysis is needed to be evaluated for a transplant but that is THEIR personal opinion. If your kidney function is declining and dialysis is on the horizon get with a kidney doctor who is at a hospital that does kidney transplants. I was fortunate in the fact that 14 years ago I was referred to UAB and my kidney specialist was proactive to get me on the list as soon as I was legally able to be on it! You're legally able to be added to the waiting list when your function hits 20%. There are 2 methods of calculating your function and it doesn't matter which method is used. The general method usually gives you a higher reading than the more personalized one. At least it did in my case. There was 7 points difference in the 2 methods. Now some people starting showing symptoms of toxins building up in their bodies at 20% but there are alot of people who don't need dialysis until they get to about 12% function. Everyone's decline is different. Mine was so slow that being on the waiting list for 5 years was easy for me because I didn't need dialysis. No, this doesn't happen to everyone and I know how blessed and lucky I am to have had things work out the way they did. I lost 3 people who were a part of my life for years because they were waiting and never received a kidney transplant. Everyone has the right to the pursuit of life, liberty and happiness, but there is no guarantee of equal results.

General Info

Here are the transplant receipients. Each of us had different conditions which caused the need for a kidney transplant. Joe (top left) had polycyctic kidneys. This condition required for him to have a kidney removed because the kidney grew to be so large. Guy (top right) had what's known as FSG. I'm still not sure what it involves but Guy went for a check up and found out his blood pressure was extremely high. Lab results later showed kidney damage so severe that a transplant was needed. Now, uncontrolled blood pressure does wipe out kidney function because the blood vessels in the kidney are so tiny they can't handle that type of pressure. It's like opening a fire hydrant to fill a latex glove. Ann (bottom right) had Wegner's Disease and that can affect the kidneys, lungs and sinuses. It can also be misdiagnosed with Good Pasteur's Disease. Then there's me (bottom left) who has Diabetes. What amazed me is, out of all the kidney transplant patients there was only one other Diabetic. He happened to receive my donor's other kidney and also lived in Huntsville. I remember doing my "laps" around the nurses' station and being lapped multiple times by this woman talking on her cell and moving quite freely. Surely she hasn't had a transplant I thought. Little did I know how important that woman would become to me, she was Ann. Ann lives in Mississippi and her and her husband, David are cattle farmers. Bruce and I learned so much about what goes into raising cattle! Another night, I was doing my laps (a little bit quicker) and here I go and lap this man who I had seen doing laps past my room. A conversation strikes up and this man is Guy. These 2 people became such an integral part of our lives not only while in Birmingham but still to this day. We met Joe and Joyce in the cafeteria one day while eating. While you are staying in the townhouse, you are given meal tickets for the hospital cafeteria. Joyce overheard us talking one day and we found out that Joyce had donated a kidney to Joe. He was to be leaving on a Thursday to go home. Unfortunately when Joe's stint was taken out of his bladder, his ureter closed up and had to have emergency surgery to put the stint back. He ended up staying about another week and we would talk to him and Joyce at the lab or clinic when we had our appointments. Faces become familar when you see them at the lab at 6:00 am every morning or the cafeteria at about 7:00 am and then the clinic at about 8:00 am. Guy and Ann were unable to have anyone stay with them at the townhouse where I was blessed to have my hubby, Bruce stay with me. The four of us were sent to the townhouse on the same day I believe. Bruce and I ran into Guy and Ann at the cafeteria and struck up a conversation. Plans were made to walk over to the lab the next morning and from that point on whenever you one of us the others were close by. The transplant team dubbed us the Three Musketeers with our designated driver, Bruce. When one of us had a clinic visit, the others went along for moral support. We cheered for one another when our labs came back and our numbers were good. We encouraged each other when the numbers were not so good. We ate most meals together, prayed together and went to the movies. I would encourage anyone who is about to embark on this journey to reach out to others around you in the same situation. Those of us in the picture prolly would not have met had it not been for kidney failure. My life would not have been greatly enriched had these people not come into it.

Memorial

Memorial

Today is not only Valentine's Day but it also marks the one year anniversary of my kidney transplant. I woke up at 8:37 a.m. and that was when the results came in and it was a go for me to receive this kidney. Last night 5 couples gathered to celebrate the gift of living. We had become friends through mutual circumstances. My friend, Guy, even had his donor family there. Fred (Guy's donor) attends church and is a friend of Guy's. What an awesome act of unconditional love Fred did for Guy! Another couple there were Joe and Joyce who will celebrate 21 years of marriage this March. Joyce was able to donate a kidney to Joe and again what a wonderful gift of love. Fred and Joyce both are well and healthy and cannot even tell they only have one kidney. With all the celebrating going on, Ann and I were reminded that there are 2 families who are not celebrating but remembering the life of a loved one who passed away at this same time last year. These families are also "heroes" in my opinion. Unconditional love and selflessness is sometimes hard to find these days in society. Yet, these people and families have demonstrated just that. The families who agree to donate their loved one's organs have no idea who or even where they will go to. An accident in Alabama could affect someone in Mississippi or Georgia or who knows where. These families don't expect anything in return and to me demonstrate God's love in a practical way. Today is an emotional roller coaster between the joy of living and remembering someone else is not. To all donors and donor families, THANK YOU!!!! If you have not designated yourself as an Organ Donor, please DO!!! If you hear of someone needing a transplant that can be done by a living donor, look into it! Every 90 minutes someone like you and me dies from needing a transplant.*Every 12 minutes a name is added to the transplant list.*Nearly 100,000 men, women, and CHILDREN currently await a life saving transplant.*In the U.S. more than 1 million tissue transplants are performed every year.*You can live a normal healthy life with one kidney.*You can donate part of your liver and live a normal healthy life. It regenerates!*You will forever change someone's life. You will let them spend more precious time with their children, grandchildren, and family and friends.*You will be a hero.YOU have the Power to Donate LIFE, be an Organ and Tissue Donor