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

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.

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?

Check Up at the Clinic

After my hospital stay in June, I had to return to the clinic 2 weeks to make sure things were still going in the right direction. At that time, they had given me a 3 month leash where I didn't need to return until 3 months later. I had that visit on October 17 and everything looked great. The doctor commented that I had a great kidney and should last me many, many years as long as I took my medicines. Unfortunately, many people do stop or alter they medicine routines for various reasons and this leads to rejections. Some people get tired of taking all the pills, some can no longer afford the cost of the medicines because Medicare is no longer their primary insurance carrier but now is classified as their secondary carrier. I assured the doctor that after having taken all the injections over the years being a diabetic, taking some pills was much preferred and that our medical insurance was great for prescription coverage. This visit also coincided with my 9 month anniversary of receiving the kidney. I'm amazed at the progression of feeling so good. Right after the surgery I felt an immediate difference but knew there was a ways to go or at least I hoped there would be more improvement. Lack of energy was still to be dealt with but it was more due to doing alot more things and being exhausted than having no energy to do anything. After I hit the 3 month mark I realized that things were alot better than than before. I still had energy issues but I knew again they were due to doing alot more things in the day than I had done in years. Around the 6 month mark there was another realization of how great I was feeling. Then the pneumonia hit and that set me back aways. When I went to the clinic I was still dealing with the after effects of the pneumonia and was told by the doctor to not be so frustrated with myself. Pneumonia is a serious illness and recent transplant patients will take even longer to completely get over something such as this. The doctor said for me to continue my 2x a month blood draws until December when I could go to monthly. Yee Haw!!!!! I will go next week for bloodwork and then it's a monthly visit for me. With this last visit the doctor wanted to add an ace inhibitor blood pressure medicine, Lisinopril. This is a common thing for diabetics to be taking because it acts as a buffer for the kidneys and helps prevent scarring in the kidneys from the effects of high blood sugar levels. Apparently my body doesn't see it as a "helper". Two weeks after taking the medicine my creatine shot up from 1.3 to 2.1 not a good sign. The doctors believed it was due to the Lisinopril so they had me stop taking it. Two weeks with not taking it and my creatine dropped down to 1.1 which is in the normal limits of someone who has never had kidney issues. February will mark my 1 year anniversary so the doctor scheduled me to return to the clinic then. If all continues to go well at that time I'll be given a 6 month leash and after that a yearly leash. It's hard to believe it's been 10 months now since the surgery. Time is flying by so quickly but it is because my days are so full now of homeschooling the kids, field trips, gymnastics and the Search and Rescue SARTEC training. There is no way I could even have hoped to think about doing all this before the surgery. I have heard from my donor's family and hope to meet with them one day as they share their memories of their loved one. Every day is a gift and whether we have received a transplant or not we need to be thankful and grateful for each and every day to the Lord. Have a Happy Thanksgiving!

8 Months and Counting.....

I had my transplant clinic visit today. It's been 8 months since the transplant and I can't believe how the time has flown! All my numbers showed that the new kidney is doing GREAT!! Yeah God! My Creatine is at 1.5 which has been lower but is due mainly to the elevated Prograf levels of the last 2 months. It's coming down and the doctors are pleased and say it should come down some more with time as long as my Prograf level remains in the normal range. The doctor told me today that my kidney should last me a good long time as long as I take my medicine. He stressed that a couple of times. I am amazed at the number of people who for one reason or another change their own medicine routines. Medicare after a transplant is practically an automatic thing and for 3 years it becomes your primary insurance and the medical insurance you had before the transplant is known as your secondary. After 3 years this changes and Medicare becomes secondary with your personal insurance as primary. Apparently under Medicare you can choose to option into the Prescription plan and this saves people alot of money on the medications. When your personal insurance becomes primary if a prescription plan is not included or the benefits for medicines aren't that great, the cost becomes prohibitive of getting the medicines. People try and space out their meds so that instead of taking the meds 2x a day they try 1x a day or even once every other day. After a time rejection becomes an issue and a good number of people permanently lose the kidney. If you are a person who is struggling with this issue of trying to make your medicines stretch. DON'T!!!!!!!!!!! There are programs I am told available to help with the cost of medicine. We are blessed in the fact that we have good insurance and didn't see the need to add the Medicare plan. We are still trying to get me optioned out of Medicare and I'm keeping my fingers crossed that it will resolve smoothly. Currently our insurance has sent 2 letters saying they have received notification of me having another insurance. We keep telling them we have not taken the Medicare plan and of course have never used it either. I'm hopeful this will all work out eventually. The doctor said some people just get tired of taking all those pills and stop. I reassured him I had taken needles everyday for over 40 years (well minus the time on the insulin pump) and that taking pills was nothing compared to that and I had waited too long for this kidney to let it just go by the wayside. UAB has added another kidney transplant surgeon so their total is 4 now with the 2 liver transplant surgeons filling in when needed. On one hand this is great news for Alabama but on the other hand it's sad that their is such a need for another surgeon. Alabama ranks 4th in the nation for Chronic Kidney Disease patients.

This visit was what I called my 3 month leash. It had been 3 months since I had last been seen by the transplant clinic. The doctor gave me a 4 month leash so that my next visit would coincide with my 1 year mark. After that if all is still going well I'll go to a 6 month leash and then yearly. And the best news yet is I'm to have my blood drawn every other week thru November and in December I can go to monthly!! YAY!!!!!

My fellow Musketeers are all doing well and I got to have lunch with one of them today while in Birmingham. The other Musketeer (Ann) had her 6 week clinic visit on Wednesday and was told depending on the CAT scan results that she may be able to stop her every other day infusion therapy for the mold in her lungs. What great news for Ann!

Because of the kids having classes today, Bruce was not able to go with me to Birmingham. I really miss him when he's not there on these trips. The last 13 years we have traveled together so many times to Birmingham that when I see the skyline of the city and he's not with me it's very sad. After being evaluated for a transplant 10 years ago, everytime we would drive past the hospital parking garage I would think to myself, "One day we'll driving into there for my transplant". As I came upon the garage today I was overcome with tears of graditude and relief. When you go through stressful times in your life, mine fields are set up and sometimes you never know when you will hit a trip wire to set off the emotions of that time. Obviously the UAB Hospital 4th Avenue Parking Garage was a trip wire for me today.

Pneumonia after a Transplant

Pneumonia is one thing that we were warned about after the transplant. After surgery I was given a spirometer (sp?) and told to use it a couple of times everyday. It's a plastic thing with a movable piece inside a tube. You blow into a flexible piece of tubing that sticks out of the equipment and the movable piece is thrust up the tube depending on how much air capacity is in your lungs. This exercise causes deep breathing which helps prevent pneumonia while recovering from surgery. When someone becomes very sedentary (inactive), pneumonia is a real threat. We were told repeatedly to be on the lookout for signs of pneumonia because of our compromised immune system with the antirejection drugs. Low grade fevers, difficulty breathing, coughing being the biggest things to monitor. Unfortunately, I came down with a sinus infection just before Labor Day weekend and by Labor Day I knew it had gone into the dreaded pneumonia. First thing Tuesday morning I went to my family physician and a chest xray confirmed that I did indeed have pneumonia. The antibiotic Levequan was prescribed as well as a cough syrup that contained antihistamines and decongestant. The cough syrup seemed to work for me but I had to really make sure I got my fluids in. The decongestant drys up your nose as well as the other parts of your body. Blood work did show an elevation in my Creatine level while taking the cough syrup but interesting something else happened during that time in which it is still not certain if it is related. One of the tests they do with the bloodwork is check my Prograf levels which is an antirejection drug. High levels of Prograf can damage the new kidney and elevate the Creatine level. Originally I had been taking 6mg of Prograf 2x a day and after the first elevated test was cut back to 5mg 2x a day. Two weeks later the bloodwork still showed an elevated Creatine but was not as high as before. So now I'm on 4mg 2x a day. Today I went back for a recheck on the pneumonia and it is clearing but not gone. It has almost been a month now and even though I had the knowledge in my head that it would take longer to recover from illnesses, living through it is quite different. My expectations have been what they were in the past with illnesses. Seems like it has taken me longer to recover from the pneumonia than the transplant surgery. So for those of you out there with transplant on the horizon or in the near past or future, take precautions! If one of your family members gets sick with anything, insist they go to the doctor and have them explain the situation. I tried staying away from the family member who was sick which may have worked had I not been on antirejection drugs. Plus I was under the assumption that sinus infections aren't contagious. That all depends on what caused the sinus infection. Cotton fields surround our community and every year when the defoiliation process starts, sinus problems abound in the community. Bloodwork should be taken today and we'll see if the Prograf level has come down some more and what the Creatine level is now.

Been Awhile

I'm happy to report that things are still going well. Blood work is done every 2 weeks now and my next visit to the clinic is in October. After that I will hopefully go to once a month blood work. I didn't realize how long it's been since I last posted until Vicky contacted me about reading my blog. Vicky, that is great that your numbers are holding steady. Yes diabetes is the reason my kidneys failed. My total function had held at a GFR of 22-24 for years. This was always scary because the doctor kept telling me I would hit a wall and just drop. Had gotten down to the 17 level and met with a surgeon who was to place a PD catheter but decided to hold off because I was not exibiting any symptoms. The metallic taste in the mouth, difficulty breathing and sleeping alot without feeling rested and itchy skin. I know you have other issues that cause some of these symptoms. On Novermber 11, I became ill with a sinus infection and that is when my function "hit the wall" and dropped to a GFR of 10. At the time of the transplant it was down to a 6. Dialysis had always scared me but when I got down to the GFR of 10, I was ready for anything that could help me feel better. My friend Ann had originally been diagnosed with Good Pasteur's (sp?). They tested her to make sure it was inactive at the time of transplant and it showed that it was indeed inactive. Problem was she didnt have that disease, she had Wegner's which has symptoms just like Good Pasteur's. I was told I'd be in the townhouse from 3 - 6 wks. It ended up being 2 wks and 4 days. Both of my friends, Ann and Guy did not have to have anyone stay with them. I did because of my swings in bloodsugars. My call for the kidney came the day before I was to start daily peritoneal dialysis. The dialysets of 26 cartons was to be delivered that Saturday. For everyone who has been reading this blog, please keep Vicky in your prayers as she starts the same journey.

Pam

Home, Sweet Home

As expected, I was admitted into the hospital on Friday during my clinic visit. The sonogram showed the artery was working fine and so was the kidney. The theory at the time of my admittance was that I was having a rejection episode that would be treated with high doses of steroids. This is a great thing for rejection but a horrible thing for blood sugar control in a diabetic. After getting into my room, the transplant doctor in charge of the hospital came in and discussed with me my bloodwork and options. He had the idea that maybe that we were dealing with a dehydration issue as opposed to a rejection issue. An IV was started and 7 hours later bloodwork was drawn. My creatin level had dropped to 2.1 from 2.4 the previous day. There still was an uncertainty about what was going on and when I spoke up and said the IV had only been in for about 7 hrs when the blood was drawn, the doctor was encouraged that dehydration was the problem. It was decided that the high dose of steroids would be put off for another day until bloodwork was taken again that night. The doctor expected the creatin to go down to about 1.5 if dehydration indeed was the issue. It came back as 1.6 so I was released about 6 hrs later with my antibiotic being switched from Bactrum to Keflex. We arrived home Sunday evening and Bruce dropped me off and went to our home fellowship. When he got home that night he found me passed out in the bathroom and was unable to arouse me with a Glucagon shot. An ambulance was called and I came to literally sitting on the toilet with 3 strangers in my bathroom. Fortunately the main person who was giving me medical help was a female and a diabetic herself. After about 2 hours, my sugar level got to about 85 and they were able to leave without taking me to the local hospital. Apparently the new kidney takes some time to really hookup and get adjusted to your body and this was the time mine decided to go full throttle. Monday night after taking a 3rd dose of the new antibiotic, my husband woke up in the middle of the night and found I was having another low blood sugar episode. After eating something and drinking a soda things went back to normal until I realized I was wheezing really bad and couldn't breathe right. A call was made to the Transplant Team and of course I was told to go to the ER or see my local doctor to make sure pneumonia had not set in. My thoughts at the time were that I was having an allergic reaction to the antibiotic. The Transplant Team called back in the afternoon and said that because it was my 3rd dose of the medication that it was an allergic reaction because they usually happen after the 2nd or 3rd dose. Another antibiotic has been prescribed and I have taken that after the transplant so hopefully I won't have the same problems. Keflex had been used many times before the transplant and I never experienced any trouble. Things change after a transplant. So if you've had a transplant remember in the hot temperatures to drink even more water than you usually do and monitor yourself with each new medication that is added post transplant.

Just When You Think Things Are Fine....

The transplant team called the other day and apparently my last blood work showed a pretty big increase in my Creatin level. It went from 1.1 to 2.2. This is not good news at all. In fact, I went into a panic and called a friend to pray with me because Bruce was unreachable at that time. At the moment there are 2 theories why this has occured. The first is that a blood pressure pill I was recently switched to could cause this change so I've stopped taking it. If it is the medication, my creatin level will return to normal and another medication will be used. The second option is that the renal artery is becoming blocked. I'm scheduled on Friday to go and have lab work, have the kidney sonogramed and see the transplant team after all that. When I see the team, they will have the results of everything and know better what is going on and what needs to be done to help save the kidney. I will post an update on Friday if they do not admit me to the hospital. If I am admitted, I'll post when I come home.

Odd Differences

Ever since the transplant, I have had 2 MAJOR cravings....vegetables and Bojangle's fried chicken. While Bojangle's has always been my favorite chicken place, vegetables were never very high up on my To Eat list. In fact, most who know Bruce and I, know that Bruce loves vegetables and since I didn't, I usually didn't take the time to cook any. Sure I ate corn, peas and string beans and occasionally broccoli smothered in cheese, but this was on rare occasions before the transplant. My surgery was on a Thursday and then Tuesday we moved into the Townhouse. That Saturday we ventured out and about in Birmingham and came upon this area called Five Points. It was very quaint and I loved it. We decided to eat at the Ruby Tuesday's there and with my entree came steamed broccoli. I tore into the broccoli immediately and oohhed and ahhhed over how delicious it was. No cheese, no salt and not even any butter that I was aware of. Bruce sat there looking at me like I had grown 2 heads! He made the comment that he thought my taste buds had been effected by the kidney disease and maybe now I would enjoy food more. I was more of the mindset that my donor had maybe loved vegetables and while surfing the net, I found that there is a phenomina called Cellular Memory. Most of the explanations I read on WHY it happens seemed to be pretty hokey and I don't buy into those theories. But I can attest to the fact that I now LOVE vegetables and make sure most nights that veggies are on the table. Salad bars were always a welcome thing for me because I did love salads at least. Those are on the "Not To Do" list now because buffets/salad bars are usually not quite the temperature that is required to serve those items and so food illnesses could be lurking for transplant patients who cannot fight off the slightest bug. And so far the best vegetable yet to me is a container of greens from "Top Of the River" in Guntersville, AL.

Before and After

I promised earlier that I would share the differences my life has been since the transplant. The list is long so I'll try and keep it rather brief and hit the highlights. First, I no longer have to see the fear in my children's eyes of the possibility of growing up without a mom. Second, energy levels! I have alot more energy now but I do tend to over estimate what I can do and end up wiped out by the afternoon. The doctors assure me this is due to doing too much too soon. Waking up from the transplant surgery, I was immediately struck with thoughts of how can I give back to the community? How I can I live the life I now have that will bring honor and glory not only to God but to the family who so willingly donated the kidney? In Saving Private Ryan, Tom Hanks dying speech admonishing Private Ryan to live a life worthy of what it cost to bring him safely home has always been a personal mantra if you will to me. Only to me it's Jesus saying it to me. Now it took on additional meaning to me. For weeks I mulled it over and over of what I could do to give back and nothing was coming. Then one day our homeschool group had a field trip where the SARTEC K-9 group came and gave a demonstration. This group is an all volunteer group who help the various agencies in looking for lost children, Alzheimer's patients and also cadaver searches. THIS WAS IT!!! This was what I felt God tell me to do. I went to K, who along with her husband, Ed, are in charge of the team. My question was "How do I volunteer?" and her response "Do you have a dog and what kind?". Her eyes lit up when it became known that we had 2 Olde English Bulldogges. She instructed me to give her a call later and we would talk. The next day I called and let her know up front about my medical situation to which she replied, "I don't see a problem, about half the team are EMT's". She then gave me her son's telephone number since he was the one in charge of training the dogs. We hung up and about 10 minutes she called back and said that she had talked to the EMT's on the team and none of them had an issue with me coming on the team. YES! Couple of days later Andy, the trainer of the team called and we set up a time when he could come by and evaluate the dogs, me and Bruce's thoughts of me being on the team. The day came and the dogs did well and we continued our discussions over lunch with Andy. His assessment was that Sneakers had the energy and the inclination to do live rescues or air scents but thought Reccee might be more suited for cadaver searches. Mother's Day the whole family attended our first practise but without our dogs. The kids and Bruce got to hide and have the dogs on the team find them. Meanwhile I got to tag along with the handlers while trying to manuever through the woods with my broken foot. Four hours later as we were driving home Bruce commented that if anyone had told him a couple years ago that I would want to spend Mother's Day in the woods, he would have said they were crazy. I have dealt with the effects of the kidney disease for so long that I had forgotten what I use to enjoy. Hiking on the Appalacian Trail was a common thing for me to do with friends. Canoeing on the Cumberland River was another enjoyment that had slipped into the recesses of my memories. This past Sunday we got to bring our dogs for the first time and see how they would do. We decided that I would be Sneakers' handler while Bruce would run Reccee in the event he ever decided to join the team also. Sneakers certainly enjoyed the freedom of being off leash in the woods! He enjoyed it a little too much. I labeled him my ADHD dog when it came time to "find" the person. He did run straight up the path the person took and stopped when he lost track of the scent. The person had made a right turn into the woods at that point so he turned to come back to me but got distracted by who knows what. Since I am also in the learning stage, I didn't know how to instruct him to go back and "find". He actually did that on his own and zeroed right in on the "lost" person. When it came time for him to come and tell me he had "found" a person, well that was when the ADHD kicked in. After a short time we got him focused again and he led me to where his "find" was. Whew! Reccee on the other hand on her first run, trotted up the path with head toward the ground moving it from side to side. Where the person stepped off the path, so did Reccee and she went into the brush where the person was hiding. Unfortunately, Reccee has problems with allergies and the outside so I don't think she has the physical constitution for search and rescue. Sneakers has the physical constitution and only time will tell if he can hone in on his focusing skills. Most importantly, the transplant team gave their blessings with me doing this as long as there would be no sky diving!

Medical Update

Friday I went to my monthly kidney transplant clinic visit. My numbers are continuing to get better except it seems my White Blood Count is extemely low and I need to consume more fluids during the day. One of the anti rejection drugs' side effect is that it lowers the WBC so the Dr. decreased my Cellcept to 3 capsules 2x a day. I was a little anxious about the visit because I had been feeling extremely fatigued the past couple of weeks. Apparently I am expecting too much and too soon after surgery. To quote the Dr. "You're only 3 months out from the transplant! You're still recovering from major surgery!" But what concerned me was that I now seemed more tired than I had since the surgery. But my voice of reason (my hubby) started listing the things I am now doing on a daily basis that I haven't done in years. Ok, ok I had unrealistic expectations but when you go from feeling really, really bad to this good (even if it's not yet at a 100% recovery) you just start to do things. One thing that has been weighing on my shoulders is my Thank You letter to my donor family. I have thought and prayed about what to say since my surgery. Somehow the words Thank You didn't seem to be enough. Last weekend I attended a scrapbooking retreat and was finally able to sit down and try and put my thoughts and feelings into a letter. Then since I make cards, I had to find an example of just the "right" card to make which with a friend's help I did. To any of you who have received a transplant, I encourage you to write or send a card to your donor family. One of my fellow transplant friends had a distant relative pass away in a freak accident and they made the gracious gift of life by donating what could be used. They made the comment to my friend that they would like to know who received his organs. My friend drove to the hospital and found out who had received transplants on the date of the man's death. He visited the patients and told them he was a kidney receipent and just encouraged them to write their letters to the donor family without letting on that he knew them. Unfortunately he was escorted out of the hospital when the nurses discovered what was happening.
While I was down in Birmingham I ran into some of my fellow transplantees and it was like old home week because we ran into each other at the Lab. All the transplant patients gathered at the Lab every morning around 6:00 am to have their daily blood drawn. Didn't matter if you were a kidney, liver or heart patient, you were there. There was a little girl who was about 5 years old that had just had a heart transplant and she too had to have her arm stuck every morning. The Lab people tried to do it as quick and painless as possible because your emotions just went out to this little girl and her parents. At least she had been through the toughest part and was on the downhill slide. Let me give you a little information on what the heart transplant patients have to go through. Because the heart cannot survive too long out of the body, heart patients once they get so far up on the list have to move into the Townhouse so they are right there when the heart becomes available. The apartments in the Townhouse are about the size of an old college dorm room. One family we met who was leaving the Townhouse had been there 7 months between waiting for the heart and the recovery time. We met a 27 yr old man who was living in the Townhouse waiting for a heart that matched to come in. Last I heard, he's still waiting. So again I'll give another plug.....Become an organ donor if you haven't already! It really does make a difference to someone and I'll go into what a difference it's made in my life in another post.

It's Been A While

Yes, it's been awhile since I last wrote something. The truth of the matter is things have gone along well and I'm out and about enjoying life again! My husband always said that I didn't realize how bad I was feeling and wouldn't know until I got my new kidney and felt good again. He was right! I do feel so much better except for lately I'm really struggling with exhaustion. This could be because I'm attempting to do too much or simply part of the recovery process. Unfortunately it could also mean a urinary infection or the CMV virus has become active. Neither of these as far as I know are tremendous obstacles and tests are being conducted to see if either of these possibilities is real. I'm down to once a week blood work and my veins are very happy about that! The women up at the Madison Medical Mall are just great and they know my arms now. While I was in the hospital, it was brought to my attention that I should look into getting SSI disability. I haven't worked since 1995 and I stopped working because of the toll it was taking on my body and health but the thought never crossed my mind to apply for disability. I thought that was for elderly people. My husband and I met with a lawyer and found that I should have applied back when I quit or as late as 2000. Because I didn't, it would be a much tougher case to win and we decided not to pursue this course. So a word to those out there who may just be getting on a transplant list, check into the possibility of applying for SSI disability. My friends, Guy and Ann continue to do well and have seem one another a couple of times now and even had lunch one day. My next visit to Birmingham will be May 23rd so I will definitely see Guy then and possibly Ann as well if she has a clinic appointment that day also. This past weekend I was sorting clean laundry and tripped over our rug and broke my foot. I was relieved when I didn't hit the floor and remained upright but I had heard the "crack" and knew I had broken something. It's actually where the big toe joins the plate of the foot. The family made a trip to the Urgent Care on Saturday night and I followed up on Monday with my podiatrist, Dr. Mark Middenberg with Whitesburg Podiatry. He has taken care of many foot related issues with me and I highly recommend him. His main concern was that the tendon is attached where the fracture is and wanted to make sure the tendon hadn't snapped off or tore. Thank God it hadn't! To those that know me, it's not uncommon to see me in a surgical shoe or even boot. I've lost count at how many times I've broken my toes or feet. Usually it's because of tripping over a dog or stubbing my foot on a chair. This is the second time I've tripped over something. Some people who are diabetics tend to lose feeling in their feet after having diabetes for so many years. While I have some neuropathy (nerve damage which means loss of feeling) I still have great circulation in my feet and still have feeling in my feet. Out of all the breaks, this I would have to say has been the most painful but my foot is a wonderful array of colors in purple and black. Slowly but surely I'm getting the housework done that was neglected for so long because of how I felt. Laundry is being done on a regular basis and I've cooked dinner almost every night since returning home from the hospital. These both are major accomplishments for me. My mentality before was that I didn't have emotional engery to put thought into what to fix for dinner or the physical energy to actually fix the dinner so we ate out alot. My one son who I would classify as a picky eater has not complained a bit about not going out to eat and my other son who eats everything under the sun, blesses me with his pure enjoyment of what he's eating. I love cookbooks and collect them. Cookbooks made by different churches I find are the best. So I've been getting them out now and just glance through and see what "pops out" to me. Saturday we celebrated my birthday and for the first time I didn't have to wonder if I would be around for my next birthday. Age has never been an issue with me. I'm proud to have lived 48 years and this birthday was very special with my new lease on life. Now it's time for my public service announcement......If you've not considered being an organ donor, please do! The waiting list in Alabama has now reached to a 7 year wait. Personally, I've know 4 people who passed away while waiting for a kidney. There is a shirt that I want to get that says "Please become an organ donor, Heaven knows we need them here.

Arriving at UAB

After my phone call from the Organ Center telling me they had a possible match, we were on a time table. The call came in at 9:35 PM and we were told to be at the hospital by 2:00 AM. I know most people would think that you wouldn't need that much time to arrive but you really do. There are many things at home that need to be done in the event that the surgery does take place like paying bills, last minute packing and taking a shower. But most importantly for me it was making sure my 2 sons would be taken care of until my sister, Jessi arrived from New Jersey. We finally got in the car and headed out. The first stop was the gas station to fill the tank and get a drink. If the surgery is a go, I figured I had until midnight to eat and drink and I was gonna take full advantage of that. Then the next stop was McDonald's to grab a bite to eat because who knew when I would be able to eat again. We arrived at UAB at 1:15 AM. This time we were told to go to the ER and they would take care of getting me admitted. Right away I picked up on the people's sense of urgency which was not there with my other visit. By 2:00 AM I was in my room. Then the flurry of people coming in began. My nurse, the resident doctor for the kidney transplant patients and a couple more medical people. The next thing I know, their giving me a surgery time and I haven't had my blood drawn yet to see if it matches the donor. At 4:00 AM my blood was drawn and I had a 5:30 AM pick up time to head down to surgery. Again the sense of urgency with everyone was very apparent. It took 3 attempts at getting my blood drawn and the IV started but it wasn't bad. One of the attempts did leave a black and purple bruise that lingered for 3 weeks. I arrived in pre OP with the news that my blood work wasn't back yet so there would be a wait until the results came in. Out of the 2 surgeries being done, I was to go first because the other man who was receiving the other kidney had to go to dialysis first before his surgery. They kept calling the lab about every 15 minutes to see if the result was in and finally at about 8:00 AM we found out it was a go and within 5 minutes they were taking me back to the OR. I was introduced to all the team members who were there. The only 2 people who weren't there was the aniesiologist (sp?) and the surgeon and they had been paged. One of my nurses stood there and held my hand and stroked my arm while they were getting everything prepared like putting the leads on my body for the different monitors. She would tell me everything that was going on around me. Everyone was so friendly and warm and I felt completely at ease. The aniesiologist came in and commented that I hadn't received any Vercet yet and their reply was "Look at her, she hasn't needed anything to calm down". He looked at my BP and other monitors and then at me. I gave him a big smile and he asked what was wrong with me, that most people were nervouse wrecks by that point. I told him I had been in good hands and there was no need to be a nervous wreck. He then sat down told me to breathe deep and the next think I know, I'm waking up in a lot of pain thinking that no time at all had past, even though it was about 4 hours. I had the ability to push a button and get Morphene. The problem was my fingers were numb and I couldn't really push the button with some effort but I finally figured a way to do so and voila no more pain. Normally after surgery you are taken to Surgical ICU. I came through surgery so well that I went directly to step down. Apparently there was some concern at first because I wasn't making urine right away. When they rolled me into step down was when I was able to first see my hubby, Bruce. They said as soon as I saw him, my kidney started pumping out urine making up for lost time. I spent less than 16 hours in step down and walked to my regular room. My nurse in step down said that she was amazed how quickly I recovered. People without diabetes didn't recover that quickly and that it was quite amazing that someone with diabetes was able to rebound so quickly. Of course they were pushing the fluids through the IV rather quickly to help the kidney come on board. The first 3 days I had a catheter in so I was really unaware of how well the kidney was doing. More details later.

Home Again

My last post was when I had gotten another call about a kidney. That kidney was a match and on Valentine's Day, I received my new kidney and the gift of life! Praise God. The last 3 weeks has been amazing and I'm doing great. I met 2 friends who also received new kidneys. The 3 of us along with my hubby, hung out together. Whenever one of us had a clinic visit, we all went. Our transplant coordinator knew if he wanted to reach one of us all he had to do was call anyone of the 3. He dubbed us the Three Musketeers. Guy and I got to go home for good yesterday while our friend Anne was hospitalized the day before and remains there for hopefully not too long. I ask that you remember Anne in your prayers. The disease that took out her native kidneys has already attacked her new kidney but the doctors are certain they can stop the progress of this. I will post at a later date some of the details of my last 3 weeks.

I've Gotten Another Call!

Tonight I received another call for a possible kidney. Bruce and I are preparing to take off. After I get in my room at the hospital, they will draw blood and then a series of tests will be performed on my blood and the donor's blood. This takes about 10 hours and the outcome of these tests determines whether or not this kidney will work for me. Stay tuned, it may be awhile before I can post again if all goes well.