Sunday, February 22, 2009

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.

Saturday, February 21, 2009

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.

Sunday, February 15, 2009

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.

Saturday, February 14, 2009



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

Monday, January 12, 2009

Happy New Year!

I'm not sure which weight loss program use to run tv ads saying "Happy New Year to a new YOU! but that phrase has been running through my head lately. Next month on Valentine's Day will mark my one year anniversary of receiving my new kidney. Wow! has it really been a year already?!?!? During one of many conversations with other transplant patients, I learned that there would be earmarks of just how well I would feel. The first one is right after the operation and the ansthesia has worn off. I experienced this so much that I told my husband I wanted to adopt another baby! His reply was "It's the ansthesia talking and I'm already gonna be working past retirement to get Samuel (our youngest) through college! We adopt another baby and they'll be burying me in my file cabinet at work!) Sure enough, the next day the idea of having another newborn didn't seem so inviting as it did the day before. The next milestone would be the 6 month mark and I did experience that briefly until the pneumonia hit. August, September and October went by in blur due to all the doctor visits and dealing with pneumonia. At times I felt like I had before the transplant and wondered if the pneumonia was wreaking havoc on the new kidney. These thoughts were always followed by a still small voice saying "You weren't brought this far just to stop".) Yes, God still speaks to people if they will only listen. This holiday season was jammed pack with festivities as most people's lives are at that time of year. For the first time my kids got to enjoy all the holiday festivities with their Dad AND Mom. We never got around to decorating the outside but it was not due to me feeling so bad and not having the energy to do anything. We were out most every night and yes I was exhausted but it was from DOING so much!! It felt great. The final milestone I'm told is the year anniversary. I think I'm already feeling that one. Yesterday, my son Aaron and I went to SARTEC K-9 Unit training and for the first time since I joined the team, I had no problems with being short of breath while hiking through the woods in search of my dog and the "victim" he had found. When I finally reached the place where Sneakers was telling me the "victim" was I became overwhelmed at the fact of how good physically I felt. So much so, I forgot to go into the "victim" and make a big deal over what Sneakers had found. Sneakers was trying to give me hints by doing fly bys and my shadow, Mike was the one who finally grabbed him so I could put his leash on. This was Mike's first time at seeing Sneakers and I work so his report was "Sneakers is doing great in his training, she on the other hand needs alot of work!" LOL I had to agree with his assessment on that. Another thing that added to my euphoria in the training yesterday was my hiking boots. I had resisted on making the investment in boots due to budgetary concerns. Last week, we trained in a wet, muddy, hilly area and I was at such a disadvantage even handling Sneakers due to my lack of appropiate footwear. Called my hubby on the way home and told him to meet me at Gander Mountain, I needed the hiking boots and could no longer put it off. What a difference it made to have the boots on!! I was more sure footed walking over the logs and inclines than ever and never even reached out to steady myself on the nearest tree, branch or person. Sneakers picked up on my confidence of hiking through woods and calmly walked beside me instead of acting like he was trying out for a spot on a dogsled team. Bloodwork is down to 1x a month so I'll go next week and then for February have it done at my year transplant visit. I'm hoping after that it will drop to 1x every two months or so.

Tuesday, December 2, 2008

Giving Thanks

This holiday season there is so much to be thankful for. It was shortly before this time last year when I started to really feel the effects of End Stage Renal Disease. For many years I had the thought that I would NOT do dialysis. I couldn't see myself dependant on a machine to prolong what would be the inevitable. Then Bruce and I were blessed to adopt our first son, Aaron when he was only 6 weeks old and my attitudes about dialysis started changing. We were greatly blessed again with the ability to adopt again from the same birth mother just 20 months later and any doubts about dialysis were now completely gone. My main drive now was to live to see my boys grow up and have families of their own. Last year when I started feeling so bad, I actually looked forward to starting dialysis so that I could feel better and hopefully live life with my kids. It's amazing when I look back and see the journey our lives have taken over the last 24 years when the news first came about my kidney failure. So of course, I'm thankful for life and health this holiday season.
Bruce's dad had an emergency triple bypass the Friday before Thanksgiving. This came so suddenly and unexpectedly. Going into the surgery Friday evening the prognosis was not very promising but about 9 hours later the surgery was finished and Bruce's dad had made it through. His progress has been remarkable and the family is praising God for His healing hand and mercy. Bruce was able to travel on Thanksgiving up to Virginia to be with his family and visit with his dad and celebrate Dad's birthday on Sunday. So I'm very thankful for Lee's recovery.
Bruce has been pursuing a doctorate degree and Tuesday before Thanksgiving, he had his last written exam (hopefully his last). This Friday will be his oral defense and if his committee likes what they see, he will be told to write up the dissertation. Writing the dissertation should not be that big of a deal because he has written sections already and is great at putting thoughts onto paper. When Bruce studies, he secludes himself and stays in the books every waking hour he is not at work. He even took a couple days off from work right before the test to study. The kids and I both are enjoying having him out of the room and with us. So that's another thing I'm thankful for.
As mentioned in an earlier post, I've been working with the Sartec K-9 Unit which does search and rescues of lost kids, Alzheimer's patients and even cadaver recovery. We had our first of many parades last night with the dogs. My kids got to ride on the float and be part of a parade. It never occured to me how something like that could bring such joy to their faces. There we sat in low 30 degree weather with the rain/sleet/snow starting and stopping riding through the streets of Decatur and they had the best time of waving and telling people Merry Christmas. Thankfully we had about 3-4 layers of clothes on so the temperature never really became an issue with us. Four of our team walked beside the float with their dogs and as we made our way along the parade route I was struck with awe at what these dogs have done and what others are training to do. Of course the St. Bernard, Toby is always a big crowd pleaser. I heard many kids during the night yelling out, "There's Toby!!". Those kids have met Toby over the course of their young lives because of Safety Education classes the team does or some other class they have attended with him. So most of all I'm thankful to be able to see my kids having a great time with something as simple as a parade and the excitement of a child as they recognize one of God's creations who has impacted their life.
What were you reminded of this Thanksgiving to be grateful for?