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Autoimmune diseases, Digestive disorders, Healthy Aging, Healthy Living, Kidney and urinary tract disorders, Mental health disorders, Neurology (brain and nervous system), Other

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Posts (108)

3 days ago · Stage 3 Kidney Disease and Diet: What can I eat? in Kidney & Bladder

@aussie I can relate to your concern about your Dr.’s response to your kidney lab numbers. I am a 63 year old with Diabetes and stage 4 CKD. (I had a pancreas transplant in 2005 to try to avoid/prevent diabetic complications like blindness & kidney failure). Over the past 4 years my GFR & creatinine have bounced around but seem to be gradually worsening. My Dr. has told me at most of my appointments that they are stable. It occurred to me that he probably has patients in way worse shape than me. I told him that my condition may not seem all that bad to him but I am trusting him to help me stay as well as I can for as long as I can. We’ve developed a good working relationship. He knows my feelings about dialysis, transplant and even my spiritual beliefs about my Christian faith. I told him I view him as a gift from God to help take care of me since I have put my life in God’s hands. I also asked him if he had a kidney to donate to me! He said most of his patients want that! 😂

Fri, Mar 20 12:11pm · COVID-19 and Transplant Patients in Transplants

Joyces @joyces It sounds like you are a wonderful cook and caregiver for your post transplant husband. One thing I questioned early on from your post is when you said “one very important thing to strengthen our immune systems is to …..”. The thing about being post transplant and on immune suppression medication is that we need our immune systems weakened (NOT strengthened) on purpose so that we don’t reject our transplants. That is mainly what puts us at a greater risk of catching and then not being able to fight off bad stuff. We have to be vigilant in finding other ways to avoid the bad stuff and protect ourselves.

Wed, Mar 18 5:55pm · COVID-19 and Transplant Patients in Transplants

Don’t know when or what kind of transplant you had but with those immune suppressants you know you are very high risk. Please stay home, take care of yourself, don’t risk exposing yourself &/or exposing others to something that could be avoided. I’m nearly 15 years post pancreas transplant and I’m stage 4 CKD listed for kidney transplant. My husband has asthma. We are both in our 60’s and staying home. Looking into pick up &/or grocery delivery options. As others have pointed out already, you can’t take care of others if you don’t take care of yourself first.

Fri, Mar 13 1:03pm · My dad has a mass on bladder and kidney not functioning in Cancer

@formydad your testimony really resonated with me. I started following your posts a year ago when they came up in a kidney/bladder group discussion before they were moved to the cancer group. I have stage 4 chronic kidney disease (CKD). I believe I will need a kidney transplant at some point but am trying to wait with trust that the details are in God’s hands. My heart goes out to you & your folks when I read about the Dr. appointments, tests, treatments, ER visits, insurance struggles, other health issues …..etc. You and your family are in my thoughts and prayers. People who pray are called Prayer Warriors for a reason. There are so many battles this side of heaven. But God is in control and we believers know how this ends. Rest in His sovereignty and soak up the help & support offered here by these great members, volunteers and mentors.

Sun, Mar 1 7:28pm · Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD) in Kidney & Bladder

Hi @billagreste I enjoyed your post. I did not know there was such a thing as creatinine test strips. I have stage 4 CKD due to diabetes and hypertension. I had a pancreas transplant in 2005 for the purpose of saving my vision, preserving my kidney function, preventing amputations and improving all kinds of other diabetic complications. So far, so good. But in 2016 my kidney function starting decreasing a lot. I’ve been through Kidney pretransplant evaluation, went to learn about dialysis and started looking for a living kidney donor. During the past 4 years my GFR has bounced around between 14 – 42. I’m currently at 26. My transplant listing at Mayo Rochester, MN is currently inactive because I’m too healthy for transplant! My friends and family have said “whatever you’re doing, keep doing it”. I haven’t really done anything different than what I’ve always done, except for 1 thing. I’m a Christian and have dedicated my life to God’s purposes. Nonetheless for the longest time I was going around saying “dialysis is no way to live, I’d rather die than do that, I won’t do it ….. blah, blah, blah”. Then it occurred to me that if I claim to be a Christian, who am I to declare what I will and won’t do? God has His plans for me and my death is up to Him not me. Now I pray all the time. I tell God how I’d like it to go down, a preemptive kidney transplant from a living kidney donor. Then I follow Jesus’ prayer example “not my will but Yours be done”. I also pray for and follow the directions of my medical team because I believe I’m supposed to take care of myself as a temple of God.

Mon, Feb 17 11:40am · Side effects of Eyelina injections in Eye Conditions

@lisalucier I’m not familiar with aflibercept (Eyelea). My Dad had macular degeneration but I don’t think he had any prescriptions for it. He had samples of vitamins/supplements given to him by his ophthalmologist and and he later bought them over the counter (OTC). They were supposed to be beneficial for macular degeneration.

I’m diabetic and had diabetic retinopathy. I had a vitreoretinal hemorrhage and ended up needing a vitrectomy & laser surgery and later followed by cataract surgery. The diabetic retinopathy has been reversed in that eye. It is very mild in the other eye. Now I‘m legal to drive & I don’t even need glasses! (I have reading glasses for reading because I’m getting old 😉)

I had a pancreas transplant to ward off the complications of diabetes. It has helped in numerous ways, one is described above. But I do still have chronic kidney disease (CKD) and will be needing a kidney transplant. I’m thankful to God that I’m in pretty good shape for the shape I’m in.

Thu, Feb 13 5:04pm · What's your experience with dialysis? Give & get support here in Kidney & Bladder

My f-i-l had ESRD/kidney failure. He spent a year or two on dialysis and said “it is no way to live!”. He ended up getting a kidney transplant from a living kidney donor. The living kidney donor was his granddaughter (my daughter). Flash forward 17 years, I have stage 4 CKD and am not on dialysis yet. I’m hoping to keep it that way and am looking for a living kidney donor fora preemptive transplant.

Mon, Jan 20 7:09am · Transplant List Process Time in Transplants

@tomkrush and @morty don’t give up hope. I have stage 4 CKD. I was approved, accepted and listed for kidney transplant when my GFR was 19 (in 2016). Since that time it has bounced from 14 – 42 and is currently 23. My listing was changed to inactive. All this time I’ve also been looking for a living kidney donor. Thus far I only have a handful of people that would even consider donating. Only 1 of them made it through the health questionnaire but was deferred after testing. When my GFR was 14 and I went to learn about dialysis the nurse educator told me to think of dialysis as a bridge to get to where I hope to end up (transplant). I’m a Christian and I believe that God has a plan for me. I hope and pray that it includes a kidney transplant. I’m also trying to trust God’s timing and that if this plan also includes dialysis, it will be ok. Prayers for all the best for both of you.