Im new to the community and I am so excited to learn and see all the questions and knowledge that I can get here.
I am currently working on get to my goal weight of 190 to be able to be actively placed on the list. I am just a little overwhelmed with what to expect about life after transplant. I have worked so hard to get to this point and now it's like I have to really think about what life is going to look like after transplant.
I am really just seeking some guidance and advice on what to expect, especially when it comes to medicine and finances, work and etc. I am completely open to all tips and things of that nature. Please share!
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QuinnB
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I am there with you, sister... I have 2-3 more pounds to go but no time...I go in front of the transplant board on this Tuesday for the surgeon to take a look at me.... I am so nervous. I only found out on June 17 this was going to happen. I started dialysis in the fall. With all the meds I am on and the dialysis, itself, I put on 17 pounds.... so I had 38 days to lose 17 pounds... so close....
Things to know about losing weight with ESRD ...it is easy to put on water weight, but drinking water helps to lose weight. You might have anemia, and that will cause weight gain. Low iron will make the body gain weight. You may not be moving as much as you did before CKD, especially with fatigue that comes with end stage. None of this makes sense but it is what it is.
Unless you have a donor, expect to wait. Have patience. I have been on the list so far three years. If you can, multiple list. When one door shuts, another will open. Weight is not always an issue with every center.
Good luck to you and I will be praying you get a kidney! When I read stories like yours I realize how lucky I was to never do dialysis and find a living donor so quickly. Mine was not family just a stranger who offered me their kidney.
Oh my. How did you find a stranger to offer that up? Thanks for the prayers. I need all the help I can get and I am grateful for it. I have lost 15 of the 17 pounds as of this morning. Those last two little pounds are stubborn.
My husband had left me because I was dieing from kidney failure so my oldest daughter put me on a dating site. I always told the guys I am dieing of stage 5 kidney failure so if I don't respond in say a week or two it's either I am in the hospital or I died. One guy said I will give you my kidney what do I have to do. We went to my transplant center January 2019 two weeks later I was told he was a perfect match and May 16, 2019 I got his kidney. No we are not dating but still good friends.
I been on list 3 year and had some offer that didn’t work out sometimes cause I was sick one two weeks ago transplant center said no cause I was on antibiotics and two time didn’t match me cause I have high antibodies and I’m a hard match . So just be aware that you may get a call and it may not work but you may get a call and it your perfect match. I can’t tell you life after transplant cause I’m not there yet I know there is a lot of medication to take that done bay be hard on your body . I know right after transplant you need to visit with the doctors it eventually decreases but you need to make sure you go to appointments you see your transplant nephrologist awhile eventually you go back to your nephrologist.
To help you lose weight try walking if it to hot in your area put on you tube Leslie Sansone has lots of goofing walking video on you tube for free .
So far I am 5 years post op and I still see the transplant nephrologist. My nephrologist that I seen before my transplant I still see but he does not really do much. He don't prescribe anything and just ask me how I am doing. He looks at the summary notes from my transplant center. He might do blood work but usually he just looks at my labs I did for my transplant center. Good luck to you and I will be praying you get a kidney! When I read stories like yours I realize how lucky I was to never do dialysis and find a living donor so quickly. Mine was not family just a stranger who offered me their kidney.
Hi QuinnB, I got my kidney 5 years ago and I will tell you this everyone's journey is different but I can give you some advice that I wish I knew before hand. 1. Have someone that can come with you to every post op appointment. My oldest daughter was my transplant appointment buddy and any time I had to go to the ER she was with me.
2. Have a backpack or a bag that you take to each appointment that has your notebook with questions or concerns in it. Snacks and drinks. Phone chargers. Books or kindle or puzzle books things to do if you have to wait awhile in the waiting room. Your meds of course.
3. A suitcase packed with what you would need if you would get admitted. Leave it in the car but just be prepared.
4. My transplant center didn't tell me that I was not to take my meds before I did my blood work. Also you can change the time you take your meds anytime you want. Like when I left the hospital they had me taking them at 9 am and now I take them at 8 am. If you totally miss a dosage just don't panic and take them as soon as you can. Make sure you set an alarm on your phone and smart watch if you have one. I set a 8 am and 8:10 am and 8 pm and 8:10 pm so I don't miss them. I also got me 4 medication holders from the dollar tree that works perfect for me. I also keep all my bottles in a plastic container so if I ever need to take all my current meds with me I can just grab that.
4. I feel the first year after the transplant is the most challenging for some. I know a lady on Tik Tok who went back to work like 6 months after and is doing beautifully. For me I was really sick and in and out of the hospital because I had Addison disease that was not diagnosed for a month in a half after my transplant. Which should of been diagnosed on day one because I had all the textbook signs. Also, a few months after my transplant I kept complaining my incision hurt and a year later they finally scanned me to find out I had several hernias. Now don't go panicking about what I am saying because most don't have a transplant center like mine!
If you have any questions please ask me and I hope nothing I said put any fear in you about this amazing journey your going to be on before you know it. I will tell you this yes it is scary but so wonderful that you forget about the scary parts. I still can't believe I am 5 years post op! I am now working full time and loving my life! You got this!
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