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10/27/2009 04:11 PM

Platelet count

Susan48
Posts: 24
New Member

My mom's platelet count went from 109,000 down to 72,000 after plasmapheresis. Her Dr.'s are moving her to rehab and won't perform plasmapheresis again. Is this normal? I want her to live. She has a strong spirit and is a fighter.
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10/28/2009 01:02 AM
geekmonkey
geekmonkey  
Posts: 15
New Member

Depending upon the number of pharesis treatments, the doctors can assess whether or not it is working or not. From a personal experience, they had to to switch the type of plasma being used as 1/4 of the way through the 15 treatments, my body was acclimating to the plasma and my platelet count was plateauing, and not increasing.

Generally, if pharesis treatments are not effective, from what my pharesis nurse explained to me, there are more aggressive treatments. My suggestion is to speak with your mom's doctor, and/or pharesis nurse and find out what is happening next. The more you are informed, the better equipped you will be.


10/28/2009 07:29 AM
mem7291

Hi Susan. First and foremost, I would agree with geekmonkey in that you should speak with your Mom's doctor if you haven't already. I'm in remission for 1 year now. In my case my platlet counts got better almost immediately (from 13k to 219K) after the plasmapheresis and then took a deep nose dive to 6K. I apparently had an early relapse and then cardiac arrest. My doctor kept going and evenually it came back up with the plasma, transfusions and steriod treatments. I stayed in ICU the entire time (28 days) and my doctor saw me every single day!! I've heard that some folks have been given chemo drugs when the plasma doesn't work. The only sure thing that I can tell you, is to not be silent. This disease is horrible and things can go bad very quickly. Make sure your doctors are able to handle TTP..if not, I would seek someone who is qualified. I live in Miami and my doctor with the help of GOD saved my life. Hope this helps..I'm saying a prayer for your Mom today.

10/28/2009 09:19 AM
Susan48
Posts: 24
New Member

Thank you, for responding to my question. She has had 8 weeks of plasmapheresis, 4 of them with plasma with protiens removed. Chemotherapy includes Rituximab - 5 doses, and cyclosporine. Her spleen was removed 3 weeks ago and last week she had a hemolytic transfusion reaction and needed to have surgery again. The platelet count took another dive today to 52,000. She sounds stronger and her confusion is gone. The high dose of prednisone has weakened her muscles, but they are helping her to get stronger. Are there other chemo therapies that you have tried? Also, what are the chances of her kidney function returning. She has only 4% of her kidney function left.

10/28/2009 09:56 AM
mem7291

Unfortunately I've only heard of Rituxan which I've never used. Perhaps there are some other folks on the line who have had experience with these drugs. I would seriously start asking your Mom's doctor a lot of questions.

10/28/2009 01:56 PM
geekmonkey
geekmonkey  
Posts: 15
New Member

Hi Susan:

With regards to her kidney functions, it all depends on how long have the kidneys NOT been functioning. Again, from personal experience, when I was admitted, I was in imminent renal failure (5%). My nephrologist suggested that if my kidneys began experiencing problems back in March/April (there's a story that ties in that makes all this make sense now) that most likely I would have to go through dialysis, and then eventually get a kidney transplant. However, if it was recent, then the likelihood if it returning to normal would be greater. As it stands today, I am at about 50% functioning from when I was released in August. My suggestion is this: when they draw blood to check her numbers, inquire about the following: her platelet count, her creatinine/BUN count, red blood cell count (hemoglobulin: checks for anemia). The numbers that are related to the kidneys are the creatinine/BUN numbers. The lower the number, the better (normal level should be around 1.4, I believe). When I was admitted, mine was at 6.2.

I hope this helps?


10/28/2009 03:51 PM
Susan48
Posts: 24
New Member

My moms creatnine level was quite high at admission but is being kept under control by dialasys and plasmapheresis. Her kidneys produce low quality urine and are no longer clearing creatnine from her system. She started going into kidney failure in July and tried to get help but her hematologist, internist and rheumatologist put her on water pills and told her to eat salt without a urinalysis and more blood tests to confirm. The only labs I saw were for Na and Cl, which were low.

I'm trying to talk with her hematologist, but living in another state is a problem. I'm wondering if her central lines might be causing a platelet drop because they are heparin coated and she is heparin sensative and had a heparin induced thrombocytopenic episode last Mon.

It does help to know that I can get information and support from you. My husband just returned from visiting her and she is still unable to walk and has blisters on her eyes but she fights everyday to come home. Thank you for helping my mom.


10/28/2009 09:32 PM
totoks
Posts: 59
Member

Predisone seems to be a part of standard treatment. One of my doctors said before plasma it was the treatment for HUS/TTP. Preidisone is used for numerous illnesses and has numerous side effects including lowering ones resistance to infection.

The testing scale or system may be different at different labs. I would suggest you have the lab that does your mothers test give you a paper copy of the lab reports. If the report doesn't show what the normal range is, ask the lab to provide you with the numbers.

I agree with geekmonkey that the BUN/creatinine numbers are important.

My platelet count was at 9 with normal being 150-400 when I was admitted to hospital. I got to 231 in 6 days of plasma. They stopped the plasma and within 10 days I was back to 8.

When I was admitted, my BUN was at 68 with normal being 7-22 and Creatine at 2.3 with normal being 0.6-1.2. It took 4 months for my red blood count to return to normal. The ALT and LDH will give you an idea how the liver is doing. I never had dialysis, my kidneys still work. My treatment consisted of predisone and plasma. They kept a close eye on my potassium. It was up and down, touch and go for months but I've been out of the hospital a year.

I hounded the doctors with questions, I wanted to know and understand what was going on. I can't say that I understand it all even yet today. At times I wondered if my doctor knew what he was doing, he even showed me some of his correspondence with Mayo Clinic. When I read the posts here I feel lucky to have had the doc I had.

Your mom may suffer from some confussion and memory loss so please be patient with her and reassure her that many of the rest of us have been there. I remember being very scared because I couldn't fill in the crosswords puzzle I like to do. I knew the answer but I couldn't spell the word. I mentioned this to the doc and he was nice enough to spell the word for me. I was about in tears as I tried to get him to understand that I couldn't write the letters down because I didn't remember how to write them. How come I could still read? I still don't understand all of that and I never did get a clear answer as to why and what was going on. No one ever told me that much of what I was feeling was normal or that others had experienced it. They also never told me that with time some of it could or would improve. I remember being so afraid that I would never be able to live independently again. Your mother may be experiencing some of the same thoughts and not be able to vocalize them. To someone who has not been through HUS/TTP it is very hard to understand all the person may be going through. Picture yourself having a stroke, being run over by a truck and having amnesia; that the best discription I can give of what your mom may be going through.

Sorry I am so long winded here but I wanted to give you some info that may help. My thoughts and prayers are with you and your mom.


10/28/2009 10:52 PM
geekmonkey
geekmonkey  
Posts: 15
New Member

totoks hit upon something very important... confusion and memory loss. a couple of weeks or so before I was admitted into the ICU, my wife and I had started a falling out, of sorts. she criticized my behavior as if I just didn't give a flying monkey about her, the kids, or keeping our family together. she said that I had the nonchalant, everything is ok, so what the family is going to hell in a handbasket attitude.

well, after being admitted and talking at length with the various specialist, the hematologist explained what happens when there are blockages in the brain due to the TTP, and the side-effects. can you imagine how big the lightbulb was that lit up in our heads? unbeknownst to me, or to anyone else for that matter, the TTP was already affecting me mentally. so you can truly say I was not in my right mind.


10/29/2009 04:59 PM
Susan48
Posts: 24
New Member

Thank you so much, totuks and geekmonkey. I called my dad and shared the information with him regarding her confusion. He's concerned she might end up in a nursing home and is always thinking the worst. She can't remember how to text and can't tell the nurse her birthdate. I talked to her today and told her how strong she is and that everyday she will get stronger. Did you have trouble driving after getting home from the hospital? I don't want her to lose her independence.

Her platelet count went up today to 75,000. She isn't being plasmapherised anymore and is still taking cyclosporine. Did your platelet counts go up and then fall again? Every time they fall, we all panic. Her LDH values have returned to normal. Getting my hands on her labs is difficult because I am 700 miles away and my dad is hearbroken and can't keep track of anything.

Thank you for your help regarding her kidney function tests. She is having a lot of fluid removed with dialysis, 9 liters at a time. The prednisone is causing fluid retention and blisters on her eyes. I'm going to have her assessed at the Mayo Clinic to see if her kidney function might return or if she is a candidate for a transplant.

All of you are helping my family greatly. I tell my mom that as long as there is breath in your body there should be hope in your heart.

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