We all here on this platform are trying to help each other. I am 53 years old with 11 months post transplant. Never been so happy before. There is a life after transplant. Please do not fear kidney disease or transplant. We all have to fight it out. I had my share of fight. There is very fair chance to live happy life again. I am not giving you hope but STRONG hope for better live.
Whenever you are posting your concern, you must MENTION your AGE . It is very important to put your age in your post. I have been through the entire journey, all the way to transplant. It will be HELPFULL for many of us to answer with more relevant comments.
It has been a long journey with so much experience to share.
I am living life with complete positivity and immense gratitude . I am thankful.
There is a “LIFE 2.0” . Sharing my positive vibe to all of you.
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Live_Positive
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Thanks for that. I have just been told I am being referred for the transplant list. At the beginning, when I heard about fellow dialysis patients getting a transplant, it felt like they had won the "golden ticket". Unfortunately the outcomes haven't been good. I started hearing such negative things. Then when I started researching all the things that could go wrong I did start feeling a bit depressed. Its good to hear positive posts like this. I know there will be lots of bumps in the road. However I suppose we should all be used to that 🙄...However as I am discovering there are a lot of patients who cant get transplants. My heart really goes out to them. Wishing everyone all the best. Its a lovely sunny morning in Scotland...which is unusual in itself. So I will take that as a positive vibe 😁😁..take care everyone xx
I suspect that people who aren't facing issues any longer often disappear from forums so those that respond are those who are struggling. (On Facebook, some actually announce their departure after a successful, non-problematical transplant.) Although my hubby had issues with his transplant, I always indicate that he much prefers a transplant over dialysis. It's the best option out there. And my heart is heavy for those who can't get on the list. May research and technology move full speed ahead to give everyone a quality life.
I love Scotland! I was fortunate to be able to attend a professional Congress there in late Sept of 2016. By far my favorite trip! I’m hoping to visit again in a year or so.
As far as transplants go, they are another treatment. Most would say they are the preferred treatment. But like all treatments, transplants include various challenges.
I’ll be 6 months post transplant this week, May 16th. Overall, things are going very well. My creatinine ranges from .89 to .99 giving me a GFR between 61-65. My electrolytes are in the normal range. I couldn’t be more thrilled with my renal function.
My ongoing issues are a hyperparathyroid condition (side effect of my CKD) and anemia. Over the past 3 1/2 months I’ve also developed low white blood cell count. I take medications for the first two issues. They administer an injection, neupogen, for the low WBC count. The injection causes quite severe bone pain for me. Thankfully, although my WBC count remains below normal, it has elevated sufficiently for them to discontinue the injections. But they are monitoring it weekly.
So, I’ve run into a few issues, but certainly very few and they’re treatable. The other anti-rejection medication side effects have abated at this point. They surgery went very well. I’m a 69 year old single woman who lives alone. I had help for the first several weeks but have been navigating the recovery living alone with help from neighbors as needed since. Transplants are definitely doable. The medical team will provide the support needed. Had I run into more issues I would have been in the hospital longer receiving the needed care.
Live_Positive, that is really great to hear that your transplant worked so well. I am 58. Can I ask what your GFR is post transplant. Also does your capacity for physical fitness improve when you have had a transplant? I have found my fitness limits disapprove with declining GFR. I used to be able to do 5km in 35mins at GFR 30 ten years ago, now I am at GFR 20 it takes me about 44 mins to run 5km
I have been doing moderate physical activity most of the time , pre or post. Except when my gfr went below 18, I used to feel tired. Doc asked me keep things in control, water intake or exercise. My Hb was low as well.
Post transplant, everything is back to normal. My creatinine is 0.8, that converts GFR to be greater than 90.
I live in cold place, so winter activity was dull. Now summer has come and I am back to my activities. Once you have the new organ, you would get it back. I follow my doc advice on everything including my activities.
Each individual body is different, so is every outcome. Please never be discouraged by hearing negative. My learning is that each individual is unique and so the outcome.
Thanks for your positive post! I too am living LIFE 2.0! I had my transplant 23 1/2 years ago. I am 73 now, but due to my Hero, my deceased donor I have lived a wonderful life. I had a full work life as the director of a non-profit helping seniors in the Milwaukee area. Was at my daughter's weddings and now have two buddies. my grandsons. When I retired at 65 years old, we moved to our beloved Rocky Mountains in Wyoming, We take trips with our kids. This summer visiting Arches and Bryce Canyon in Utah. In March we traveled to the FLorida Keys meeting friends and played tourist together.
I am also active with my local Donor Alliance CO/WY as a volunteer and public speaker. I am also a kidney advocate and an ambassador for the NKF.
how long before you got a transplant? I’m 74 just diagnosed w stage 3b. I’m feeling overwhelmed with what/how to eat. I’ve always had a healthy diet and have nothing else wrong except IBS for many years.
Thank you for that it's a very encouraging message to read. I'm a 64 year old woman not yet on dialysis and on the transplant list for 2 years now and understand the wait can be on average where I live in Oklahoma. I would love to know what did you pack in your "go" bag what's necessary and what is not? How long did you stay in the hospital after transplant? What are the visits like after you leave the hospital but are having to come back for constant blood work etc? Thanks in advance.
For me, when I had my transplant in 1999, I was only on the "wait list" for 14 months. Today in my home state of Wyoming, the wait is more like 5 years. No transplant center here, so have to go to Denver or Salt Lake City. Many states, including WY have passed the Living Donor Protection Act. Opens up more transplants with living donors, removing the discrimination from Insurance companies. Hoping it will open up more transplants.
Take care all and hoping if you are waiting...your wait will be short!!
How WONDERFUL. So VERY happy for you that you received a transplant and are doing well. Praise the Lord. I am 66 yrs old, had ckd for 14 years and am now in stage 5 and just started dialysis after waiting until a gfr of 5. It has bene rough this week as I am new to it and really hard. I can only pray it will get better. ALso on the transplant list at Mayo. There are 2 people that have stepped forward to be a living donor and one just completed the testing last week. He is 37 an in great shape so we are praying so hard that he will pass everything. We are so thankful for those who are trying to be a living donor and thank the Lord for their selflessness. I am scared somewhat of all the meds if I am blessed to get a transplant. Would you mind sharing what meds you took at the begninning and which ones worked the best? I know there are many but want to be prepared to do it and have a positive approach, like you! Can you tell m what happened after your surgery day and how it went in the hospital and recovery. I cannot thank you enough for anything you can share. This has been such a journey and it is people like you who make it better!! God bless....
hello - I am glad that you have a living donor, I pray that everything works out.
There is 3 medication just to keep transplant, Tacrolimus, Mycophenolate and Prednisone. Depending up on individual does will be different. My surgery was good. 2nd day I was ask to stand up. 3 day, I started walking. So it was gradual improvement.
Just be confident and be positive. Prepare your mind and body to accept the new organ. Your positivity will help your body to accept this foreign body part. I believe in it.
You will be fine and you will have this new life again. Ask me anything.
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