Kidney Transplant blog

Treatment
This is a repost from a Kidney Transplant blog that one of my students brought to my attention and said it was enormously helpful:

http://www.carepages.com/forums/members-recommend/topics/750-kidney-tra…

discussion forums: members recommend

kidney transplants

| 13 posts, 13 voices Report Abuse

Marina2009
4 posts
kidney transplants
Posted Feb 25, 2009 10:03pm by Marina2009
I would like to hear from others who have received a kidney or kidney/pancreas transplant.

I’m currently on the list and would love to hear your experience…... from when you got the call to your hospital stay and going home and living happily ever after :)

rfcnj
1 post
kidney transplants
Posted Mar 21, 2009 10:31pm by rfcnj
When I was diagnosed in 1984 with Nephrotic syndrome, which affects the kidneys’ filtering units and causes scar tissue to form often leading to kidney failure, my life was changed forever. Because of this disease, my youth was spent filled with countless doctors’ appointments and hospital stays and eventually, thanks to my wonderful brother Michael, a transplant.

Now 20 years later, the disease has returned and is attacking my transplanted kidney. Currently there is no known cure for Nephrotic Syndrome, my hope is through The Nephcure Foundation to not only help myself but more importantly to raise enough awareness about these rare kidney diseases so that someday there will be a cure, so others like me will not have to go through the same things that I have.

SavannahRae
1 post
kidney transplants
Posted Jan 17, 2010 11:34pm by SavannahRae
My daughter was born with kidney disease on 10-07-08 and had to have both kidneys removed at 4days old and she just got a kidney transplant. her cousin, a living donor, gave her a kidney on 12-09-09. The doctors told us how bad things could happen but are rare…Well my daughter’s transplant didn’t go as planned. After the surgery she wasn’t urinating like she should have. There were only a few times that she did urinate and found out that she was in rejection so they gave her meds to help reverse it. She started peeing after she received the medicine but it only lasted for a 1 1/2 days and the urine output stopped again…Because of these issues she has been in the ICU at Pittsburgh’s Children’s hosptal since her surgery on 12-09. They just discovered that her feeding tube punctured a hole in her intestine and it was leaking fluid into her stomach causing infection which could be one of the reasons that her kidney wasn’t functioning properly…She is currently in a drug induced coma because she just had another surgery on Wednesday and she is in critical condition.

I pray that everything will go well with you but if you ever need anything please let me know…God Bless

MisterK
1 post
kidney transplants
Posted 7 hours ago by MisterK
I had Kidney Disease and was within months of starting dialysis. My daughter insisted on being the donor and on 4/08, I had a transplant. The surgery was significant and I was hospitalized a week while the usual stay is four days. I had several episodes of rejection over the next year, but finally everything is stabilized. I take all of my required meds exactly as directed and I do take precautions in food selection and prep. I always wash my hands and use sanitizers when in public. I am very fortunate and thankfully my daughter is doing great as well! Good luck to you.

MSteppert
1 post
kidney transplants
Posted 7 hours ago by MSteppert
My husband has had 2 kidney transplants. The first one was in 1990 from his sister that did not take. He then went on dialysis for a year until we recieved a phone call at 1 am in the morning telling us they had a kidney for him. They want us at the hospital by 5 am. We live about 2 1/2 hours from the hospital. We made it there by 5 am. They did a final crossmatch and then dialysised him once again and then they took him to surgery. He will have this kidnedy 19 years in June 2010 but in October of 2009 they told him that he would need another transplant that all the medication that he is on is scaring the kidney. I am being tested to see if I can donate for him this time. He had polysystic kidney disease and our oldest daughter also has it. She is 26 and they told her she would need a transplant when she is 50 or so. I wanted to wait to give her a kidney but they told me I would probably be to old. My husband has been put on the list while I am having my workup done. My husbands fear is that he does not want to go on dialysis. If you would like more information or would like to talk please email me at mufmary@aol.com for I can tell you much more.

Crystal035
1 post
kidney transplants
Posted 7 hours ago by Crystal035
I had my kidney transplant on April 28, 2006. It was almost 4 years I had been on the list. I had a few calls, but none of them every worked out. I just kept waiting while I got sicker. After being on dialysis for a year my husband decided that he would get tested. He was a MATCH!!!! The surgery went great and I felt like a new person. I am pregnant with my second child since the transplant and I am doing fine. I did have lots of infections and a couple that put me in the hospital, but nothing that hurt the new kidney. Good luck to you!

PREGSRUS
1 post
kidney transplants
Posted 6 hours ago by PREGSRUS
I am at year 14 for my transplant. I remember being VERY overwhelmed with the new medications and risks. Times have changed and I would ask LOTS of questions now-before your transplant. Find out what meds you will be put on, research them and be prepared for the side effects—acne, hair growth, tremors…...skin cancer or even lukemia. I have always wanted to have someone to talk to that went through this and am glad this web page was sent to me. Please keep in touch.

johnd
1 post
kidney transplants
Posted 5 hours ago by johnd
I have PKD, inherited from my dad. He’s been on dialysis for 20 years. When I finally got tested for this, after being bugged by him to do so, I found I had it too. It turns out that was a good thing. My nephrologist helped me keep up with my kidney function and we were able to get me on the list as soon as I qualified. I thought I’d have to wait many years for a donor. It turned out that I got lucky. I only had to wait for about 6 months because a perfect match came along. I got the call early one morning in November 2008. It happens I had an appointment to have the fistula put in that week, but was able to put that off. What I’m finding is that everyone is differnt. But I’m also finding out that sometimes it works out so well that it’s hard to believe. I’m really blessed and hope it turns out as well for you.

BarleyPiper
1 post
kidney transplants
Posted 5 hours ago by BarleyPiper
If you haven’t done so already, I would suggest checking out www.aakp.org. This is the website for the American Association of Kidney Patients. They have patient experience articles for people on dialysis as well as those who have received a transplant. The articles are very helpful. If you visit the site, go to the transplant information section (left navigational bar) and search the list for the category patient profiles. Good luck!

HeatherHazlett
1 post
kidney transplants
Posted 5 hours ago by HeatherHazlett
Hi my name is Heather and I am a kidney pancreas transplant recipient. I was diagnosed with diabetes at the age of 2 and in August 2000 my kidneys failed. I was listed at a major hospital in NC in July 2001, but I had very high antibodies and type O so the wait at that time was to be about 3 1/2 years 6 years later I was still waiting. I had begun the process of getting listed with a 2nd center in 2005 but due to circumstances I didn’t get listed there until July 3, 2007 I am very happy to say that 10 days later on July 13, 2007 I received my kidney pancreas transplant. This was my 3rd attempt at getting a transplant and the closeset I ever came well it turned out this was the one!! I am happy to say that I am 2yrs 7 months post transplant doing very well diabetes and dialysis free! There have been some bumps along the way and I’d say that by far the first 5 months to a year were my most difficlult. I am very fortunate to have much support online so I have known a lot of what to expect. Please don’t hesitate to contact me with any questions you may have or anything you just want to know. I think everyone’s experience is different, but I would do it all over again and I live every day extremely grateful to have this chance to live life like I have never knows!

Best of luck to you & please don’t hessitate to contact me! IM4EVERGR8FUL@gmail.com

:-)Heather

Sharonb1
1 post
kidney transplants
Posted 4 hours ago by Sharonb1
My name is Sharon and I am a kidney/liver transplant recipient. My transplants were in September, 2007. I had Polycystic Kidney and Liver Disease. I am doing extremely well. My doctors are very pleased with my progress. I also have a blood disorder which is why the hospital, at first, was not excited about transplanting me as they thought my blood disorder would progress into cancer with the immuno-suppressant drugs. However, I just had my 2 1/2 year check up, and my blood disorder has remained stable. My kidney and liver are working perfectly. All the blood test numbers for them are normal. I am so grateful to God for bringing such healing to me. I wish for you to have the same experience that I am having with such success. You are free to contact me at Sharonb1. By the way, God had the hospital call me to come for transplant when I was in Sunday School during prayer time. So my Sunday School class continued their prayers which now included me for safety traveling to Cleveland Clinic and a successful transplant experience and then our pastor prayed for me during the worship service. God is Good all the time and His timing is perfect!

Sharon

JimsWife
1 post
kidney transplants
Posted 2 hours ago by JimsWife
Marina
After 3.5 years on peritoneal dialysis, my 48 year old husband got the gift of life last Friday. He came home on Tuesday and we went to the 1st clinic visit this morning. There, I talked to a woman at 10 weeks and another at 6 months and they were glowing! My husband is in some minor groin pain but so happy to be off of dialysis. I know that the road is uncertain but have faith. It will come when you least expect it. After waiting so long for the call – we finally decided to get a german shepherd. I knew it was a sign when I found out the parents of the puppy are named Grace and Mercy. Less than 24 hours after bringing the puppy home – the call came. Just like they said – it would come when you least expect it. Live life and turn it over to God. We did not have any idea what the experience would be like and a calm enveloped us once we got to the hospital.

Amy10
1 post
kidney transplants
Posted 2 hours ago by Amy10
After receiving a Kidney/Pancreas Transplant in 2001 I am no longer at the mercy of diabetes. After living with diabetes for 19 years, the disease took its toll on my kidneys. To combat kidney failure, I underwent a Kidney/Pancreas Transplant at Baylor Hospital in Dallas, Texas on February 3, 2001.

In 1982 at the age of 12 I became very ill. I went to our family Dr. and was diagnosed with type 1 Juvenile Diabetes. Several years after being diagnosed with this horrible disease and giving myself daily insulin shots, I started to experience complications. I started feeling very sick and my vision started to decrease. My original thought was that my contacts were dirty. I went to a specialist to find out that I needed to be treated for Diabetic Retinopathy. The thought of me losing my vision scared me beyond belief, but my vision was soon corrected with eye surgery. I started becoming ill once again and went in for a Dr. visit only to learn that my Kidneys were failing. I was in shock when I was told that I needed to find a donor for a new Kidney. When I was first told that I needed a Kidney Transplant, I thought it was going to be the end of my life as I knew it. I thought everything would change.The first thing that came to mind was that I was going to die and I was only 29 years old. Once my Kidney level dropped to a certain percentage I was then placed on the Kidney/Pancreas Transplant list. I waited less than 4 months on that list and received a page that they had in fact found a Kidney for me. I was relieved, excited and so very happy that I was going to live. Then I got the news that the Kidney was not a good one and back on the list I went. Waited less than a week and got another page that they had found a new Kidney for me.

I was then fortunate enough to receive my transplant from a young teenage boy who had passed. I will forever be grateful to the family who donated his organs, as they saved my life and gave me another chance to live a long healthy life.

For myself, the results of my transplant has been a welcome relief. But now looking back, it doesn’t seem that bad. Things are back to normal for me, and the experience hasn’t changed my life that much at all. With the support of my family and friends, and the great care I received at Baylor Hospital as well as Dallas Transplant Institute everything turned out just fine. I was very active in all sports growing up with Diabetes and I continue to play all sports now. I currently play indoor soccer as well as outdoor soccer, I coach youth Basketball and Soccer, and I can honestly say that I’m in the best shape of my life. Since the Transplant I have always kept my weight in check and currently weigh 129 lbs and I’m 5’9. By looking at me now, you would never even know that I had type 1 Diabetes nor would you be able to tell that I received the gift of life by receiving a Kidney/Pancreas Transplant as I look amazingly healthy, I feel healthy and I am healthy..

I am so grateful and very thankful to GOD for blessing me with these Gifts. I have not only been blessed with the Gift of Life, I have also been blessed with the wonderful gift of not having diabetes in my life after 19 years. However, I will always be a diabetic at heart. The Doctors at Baylor are my heroes. I know that I face a challenge every day. I pray that a cure for type 1 diabetes will come sooner than later. It would be the best gift ever for all of us. I encourage everyone to be conscious of their health. But I especially encourage everyone with type 1 diabetes to be as compliant as possible. Good control helped me to survive all of the tough challenges that came my way. While thinking of dialysis and kidney failure may be terrifying to most everyone, remember that I have been living for 8 years after my Transplant without any diabetes related complications and Kidney /pancreas failures. At 39 years of age I love my new life and with the gift I have received, I’ve become a better, stronger and wiser person.

No matter how many surgeries I’ve had, no matter how many Hospital stays I’ve been in and no matter what life hands me, I will continue to take care of myself, love myself and be grateful for all the beautiful things in life and everything else in my future will fall right into place.