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10/02/2009 07:45 AM

My mother

medeirob
Posts: 2
New Member

Hello all, my name is Brian and I am a 40 year old male in South Carolina.

My mother is 62 years old and was diagnosed with TTP in December, 2008. It is currently in remission (after she spent nearly 5 months in the hospital and 9 additional hospital stays this year), however it damaged her kidneys and heart greatly prior to them determining what her illness was.

She's currently undergoing dialysis 3x weekly, due to almost complete kidney failure, and she now how congestive heart failure. The combination of these ailments has made it very difficult for her to have ANY times where she is not exhausted and nauseated.

The 3 doctors she has - kidney doc, TTP doc, and cardiologist, cannot seem to get on the same page - and my mother is suffering for it. They've not been able to find the right treatment or combination of medications to even make her less miserable.

She's told us that if she doesn't see some improvement by Christmas 2009, she doesn't want to live like this and will no longer do dialysis, which will of course cause her to die.

I'm looking for some help or some recommendations on doctors - I wonder if getting a second opinion on her overall care and the coordination of it would help. I believe the doctors she has are doing all they can, but I can't help wondering if someone else more qualified or experienced with this type of scenario could more effectively help her. We only have weeks left before she is going to give up.

If anyone has any thoughts, recommendations, information on support groups, etc. I would greatly appreciate it. Thank you in advance for your help.

Reply

10/02/2009 08:16 AM
mem7291

Hi Brian. You are definately doing the right thing by seeking outside help. I'm Ana Maria, I've been in remission for 1 year now. I live in Miami. My doctor's name is Dr. Marvin Diaz-Lacayo. He is a hemotogolist. His office number is 305-932-4198. I received excellent care from him and the team of doctors at Aventura Hospital. God bless.

10/02/2009 11:34 PM
totoks
Posts: 59
Member

There are many good hemotologist. Ask questions as to if they have treated patients with HUS or TTP.

Post edited by: totoks, at: 10/29/2009 09:38 AM


10/23/2009 07:31 AM
totoks
Posts: 59
Member

Brian,

I would encourage you to have your mother read this site. Many of us are dealing with side effects of HUS/TTP that the doctors don't seem to understand like memory problems, body aches, fatigue and such. We can't help her heart and kidneys, but it may give her some inspiration that she is not alone.


11/09/2009 07:06 PM
Susan48
Posts: 24
New Member

Hi Brian,

My mom is currently suffering from HUS/TTP and is in her 3rd month in the hospital. She has undergone plasmapheresis, Ritiximab (5 treatments), splenectomy, and cyclosporine. Her kidneys are down to 4% function and she must do dialysis 3x per week, sometimes more if she needs extra fluid taken off. Her legs are carrying 20 lbs of extra fluid on each leg, making it difficult for her to learn how to walk or get out of bed again.

My mom's Dr.'s seemed to get the ball and run in a new direction, depending on who was on call that day. Her hematologist is in contact with the Mayo clinic and they are offering advice. Her platelets are now up to 300,000 and she is in rehab. with pneumonia and bed sores.

This is a terrible illness, but as you can see from the replies, there are many living miracles.


12/12/2011 10:43 AM
medeirob
Posts: 2
New Member

Thank you to everyone for your kind replies and suggestions. I'm sorry that I have not been on this site much over the past couple of years. We've had a lot to deal with.

Mom passed away on September 28th of this year. She fought bravely for 2 1/2 years, but eventually, it just wore her down. When her quality of life got to a point where she didn't want to face another day, she chose to end dialysis.

I send my best to each one of you who so kindly offered suggestions, support, and/or kind words.


12/15/2011 07:25 PM
krazymommy66
krazymommy66Posts: 64
Member

So sorry to hear about your loss, my Rachelle passed away November 18th after a 3 year TTP hell.. Plasma, blood transfusions, kidney failure, transplant, another failure when TTP came back. Stroke, seizures, shots in her belly for her WBC ... Loss of vision, brain bleeds, in the hospital months at a time...omg I could go on and on, It was hell for me not to be able to help her...for a 23 year old girl to get that sick after having a new baby was not in our plan. Guess god has a plan of his own.

12/16/2011 06:23 AM
LRandle
LRandle  
Posts: 309
Group Leader

Sorry for you lost. May God be with you and your Family. We are still here for you anytime.

Be Bless,

Lisa


12/16/2011 08:03 AM
krazymommy66
krazymommy66Posts: 64
Member

Thank you Lisa Smile
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