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MDS and kidney failure

Home forums Patient Message Board MDS and kidney failure

This topic contains 7 replies, has 1 voice, and was last updated by  Kathy7964 12 years, 2 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #18516

    Kathy7964
    Member

    My Dad was recently informed that his kidneys are beginning to fail. I was wondering if anyone has had any problems with their kidneys. He retains alot of water especially in his feet and legs.

    He is thinking of traveling this month on almost a four hour flight to Ohio and I’m worried.

    Thanks,

    Kathy

    #18517

    CarolineG
    Member

    Kathy.

    My Dad has CMML and kidney failure. He didn’t even know about his kidneys being diseased until a year and a half ago when he had kidney stones. It has gone quickly since then. Right now we keep his creatinine levels somewhat under control with Aranesp shots. The Aranesp helps CMML as well so Dad is comfortable but by far not healthy. For over a year his creatinine level has stayed steady in the mid-200’s. That level is high but since it was regular for several months it became ‘normal’ for Dad. Over the past 4 months it has gone to the mid-300’s and has stayed there. Since there is now that much more poison in his blood his mind is being affected. He is very forgetful and vague. We had him checked for Alzheimer’s but it is his kidney disease that is causing the senility. The doctor has said that it will only get worse as his creatinie levels increase and plateau. Once his levels reach the 600’s Dad will get Dialysis. I don’t think Dad’s mind will be at all normal anymore if what we are seeing in his behaviour now is any indication of what is to come.

    I hope that they caught your Dad’s kidney failure early enough that they can help him.

    Blessings,
    Caroline

    #18518

    CarolineG
    Member

    Kathy.

    I just though of something else. At first Dad had a kidney specialist. After a few visits this man referred Dad to a nephrologist…who specializes in the nephrons which are the part of the kidneys which filter blood. Dad’s disease is called glomerular disease.

    One of the first things he did was to put Dad on a Renal diet. The 2 main things Dad was told to do was to take all citrus and citrus juices out of his diet and to refrain from eating potatoes. If he does eat potatoes, he is supposed to boil them twice to make sure that all of the starch is taken out. There are alot of other things on the diet as well. Perhaps you can ask your Dad’s doctors whether they think that diet will help him?

    Caroline

    #18519

    Kathy7964
    Member

    Thanks for your help. He went to a nephrologist a couple weeks ago and was told the only way to know what is causing it is a biopsy which he could never have. His creatatine level is 3.2 and he goes to the doctor on the 19th. I am just worried because he is so swollen all over. We live in Las Vegas and he is going to Ohio the end of the month and I’m scared something might happen because of the elevation flying and if he’d get sick there what would we do.

    As far as a diet, it’s hopeless. He had open heart surgery and didn’t follow up watching what he eats. I try telling my mom but she is so in denial and feels that he’s old so let him eat what he enjoys. It’s a never ending battle trying to help. I believe it’s never to late to try anything to make his life easier.

    I do notice he tends to forget things, his driving is getting worse but I can’t tell him anything.

    All I can do is pray really hard.

    Thanks,
    Kathy

    #18520

    tasmith123
    Member

    I hope that your father can make the trip back to Ohio. I went back to Fl. and was glad I did .I,ts good for your soul as well as your mind.Good luck to you all T.A. Smith

    #18521

    shirlsgirl
    Member

    Best wishes to you and your Dad Kathy. Hope he is able to make his flight to Ohio.

    #18522

    Barbara D
    Member

    My Husband is 67 and was diagnosed a year ago. His Creatatine level was 3 last week and Potassium 6.6. He had an aranesp shot last Monday and another today. With his diabeties, we have had a constant balancing act of Kidneys verses fluids. The diuretics affect his kidneys even in small doses.

    Right now his legs are red and look like they will explode. He will be in the hospital soon….

    Be glad your Dad is going to Ohio. If he gets sicker he does, staying home won’t change that. If he wants to go, support him all they way. If the Doctor says no, that is different.

    It is hard being loving and caring and sometimes too protective. I am guilty of it too.

    I am not getting answers I want to hear from the Doctor. I need to learn the right questions to ask. All I know is they say there is no cure, as Lyn (my husband is not eligable for a marrow transplant)

    I will be reading more of the forum to get more informtion.

    Big Monkey Hugs

    #18523

    Kathy7964
    Member

    Thank you everyone for all your thoughts. My Dad made the trip and is still there. All of our family is back there so it gave him a chance to visit with everyone.

    The day before he left his creatatine level went down to 1.7 (not sure what the potassium was..I think it was high).

    He told me if he can make the trip on the plane he still wants to ride the coasters at Six Flags Magic Mountain. He is still so positive and in good spirits after being diagnosed with this horrible disease.

    He has so many different doctors and it’s hard to keep track of what which one says. I keep praying so much for him and everyone on here and their family as well.

    Thanks again.

    Kathy

Viewing 8 posts - 1 through 8 (of 8 total)

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