MDS and kidney dialysis

[jan72]

I am writing regarding my mother who has been diagnosed with MDS since Spring of 2004. She is currently hospitalized and has been in intensive care for almost a month on a ventilator. She has other health issues besides the MDS, including Diabetes, a mechanical heart valve and is currently in kidney failure and has recently been started on Dialysis during this hospital stay. Has anyone had any experience with someone who has MDS and kidney dialysis? They are having trouble keeping her fluid levels right along with trying to keep her platelets up. When they give her more platelets, it causes her fluid levels to rise and the dialysis takes away some of her platelets, which causes her to need more platelets. Help! Any input would be appreciated.

[Bkwits]

Hello jan72,
As you probably know by now, every case of MDS is different. What type of MDS does your mother have. Has she been on the ventilator for the whole month? My husband was in the hosptial for two months after his kidneys failed (during Vidaza treatment). He also had very, very low platelets and was resistant to plt txs. He had dialysis two or three times a week. He also had many other problems. I don’t remember hearing that dialysis caused his platelets to drop. The plts couldn’t get much lower in his case.
Take care of yourself. You will find a lot of information on this forum as well as some solid support.
Regards,
Barb

[jan72]

Barb,

Thanks for your reply. I am just starting to learn more about this disease. I don’t know what her specific type of MDS is. I do know that she had been getting Pro-crit shots weekly and she is continuing to get this through an IV in the hospital. She was put on the ventilator on 7/21 and had been taken off the ventilator for four days before being put back on due to her CO2 increasing and her blood pressure dropping. She has to get platelets sometimes several times a day and they can’t seem to keep them stabilized. There has been talk of her developing antibodies to the platelets, but I haven’t heard anything definitive about this yet. Our whole family has been on a roller coaster ride since she was admitted to the hospital a month ago. One day things seem to be going better and when you start to feel some relief, something else comes up that seems to spiral her back down.

I am so sorry about your husband. You certainly do need a lot of support if your family member is suffering or has suffered from this disease.

[Bkwits]

Hi Jan,

Thank you for your condolences. I can certainly relate to what your family is going through. Do you know what your Mom’s platelets are running? The hemo doctor told us that platelets don’t last very long. Don’t become too discouraged because anything is possible at this stage. Joe had to have several surgeries, and they had to run platelets through during the surgeries. He was resistent to plt txs from the begining. That is why he chose to have the Vidaza treatments. There are other treatments for low platelets, but nothing worked for Joe.

There is a multitude of help on this forum. Thank heavens I had been reading the posts and other info on MDS, so I could understand what they were talking about. It is some comfort to be on the forum now because most of us have empathy for what others are going through.
God bless,
Barb

[jan72]

Barb,

Just wanted to write since I had written to you a couple of times about my mom and let you know that she passed away on Friday, August 25th. She was in multiple organ failure and her vascular system just collapsed. They were running platelets in her up until the morning before she passed away. The doctors gave us no hope, so we decided to take away her blood pressure medication and her dialysis and let her go peacefully. This is a terrible disease and I feel so badly that other people have to go through this with their family member. Any advice on how to begin getting over the loss of a loved one? My family is just emotionally and physically exhausted from the hospitalization (almost 6 weeks in ICU)and loss of our mother.

[Caroline]

jan72,

My deepest sympathy on the loss of your Mother. She fought a hard fight. Time will take away the bad parts and will leave you with good memories of her.

Blessings,
Caroline

[eve]

dear jan

my thoughts and prayers are with you and your family at this most difficult time

eve

[Russ]

Jan,
My condolences and prayers for you in the loss of your mother. May your memories of better times sustain you through this period.
God bless,

[Bkwits]

Dear Jan,

I am deeply sorry for your loss. I know that you have a lot to deal with. It’s not only the passing of a dear one, but dealing with the aftermath of her suffering. I hope it some comfort to you to know that she is at peace.

Please know that my thoughts and prayers will be with you, as they have been for the last two weeks. Thank you for letting us know.
Barb

[gemloyear]

Jan & family, My sincere sympathy, our thoughts and prayers are with you.
Ellie & Glen

[SusanJ]

Dear Jan,

I am so deeply sorry about your loss. My dad is in the hospital with bad case of cellulitis . He has only been there for a week and already we are all so exhausted. I can only imagine how exhausted you must be. I am so scared. Daddy doesn’t seem to be getting any better. Every day I think, I can’t handle this. God bless you and your family. I will keep you in my prayers.

Susan

[jan72]

Susan,

Hang in there. The best thing you can do is to continue to ask questions to the doctors and nurses and be your Dad’s advocate while he’s in the hospital and unable to do this himself. You also need to take care of yourself, your family and make sure everybody is eating right and getting plenty of rest or you will be unable to help your Dad when he needs you. I will be praying for you and your family. Take care.

Janice

[Author]

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