What is Thrombocytopenic Purpura
Thrombocytopenic purpura are purpura associated with a reduction in circulating blood platelets which can result from a variety of causes.
There are two known types:
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New to group.. TTP fight story.. need feedback
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My brother(29) was sick with flu like syptoms and went to the hospital on the 3rd day, April 1st (worst April fools ever). At that point the local ER said his kidneys were failing and platelets low and fragmented so they sent him by ambulence to the regional hospital 100 miles away were they could treat him. Two hours after arrival the doctors finally arrived and diagnosed him with TTP/HUS. Creatinine level was around 9.5 and platelets around 7k. The plan was of course to start plasmapheresis ASAP. After a groin catheter surgery that night they wanted to administer platelets before the first plasmapheresis treatment. During which he became sweaty, dizzy, and then blacked out as he had a seizure. He remained in a coma like state as they started the plasmapheresis treatment. They had trouble getting the machine to run as his bloodpressure was very low. They eventually reversed the catheter lines did some tweaking and got it running. He awoke 1/2 way into the treatment of course still very out of it. Treatment would commence daily with a new catheter being put in his neck 3 days later. After 14 days of treatment his kidneys had returned to near normal and platelets around 100k. Outpatient therepy was considered till he had an intense pain episode that revealed to be gallbladder stones. They wanted to remove it but decided to wait as platelet level was not optimal. The pain would subside by the next day for now. He became an outpatient after 18 days in the hospital. They started doing treatments every other day. During about the 30th treatment a gallbladder attack occured. He stayed in the hopsital for 2 days for observation and gallbladder surgery was scheduled. The gallstone attacks lowered his platelets like 30%. Plasmapheresis Treatment became 2-3 a week and 2 weeks later his gallbladder was removed. The gallbladder was 'bad', with thick walls and full of small stones. More then likely a result of the TTP's organ damage but also posibly the trigger of the TTP it may never be known. After a total of 37 Plasmapheresis Treatments platelets were maintaining above 190k and 2 weeks after the last treatment the neck catheter was removed. Three months later the nightmare was over. Hopefully there is limited permanant damage aside from what is known. I ask him about neurological damage any fuzzyness, he says hes always had a fuzzy head hehe. I also noticed that he wakes up sometimes in a near panic looking for me, just as he had done a few times in the hopital early on. I'm sure thats not uncommon following near death experiences ;/ Have any of you experienced this? This was a terrible experience for me, much worse for my brother. He went through hell and has said hes not sure if he could do it again. I am incredibly enlightened and glad for the medical miracle plasmapheresis. We had never heard of TTP. I am thrilled that he his alive and cherish each day. I have read many of your experiences and have a good idea of what you are going through. I just want to say I wish you all the best.
Me and my brother need your help and advice as the aftershock of this crisis hits. He did not have Health Insurance. So of course we have an uncounted number of medical bills. One doctor jokingly guesstimated each treatment to cost $5-7,000 :O throw in 18 days inpatient care, 3 surgerys, medications, ect. On top of that he was out of work for 3 months, I had to miss a lot of work and drive 200 miles a day for 37 days. Medical Bills aside survival is hard enough right now. Getting caught up on bills and monthly payment are priority as he is just now getting back to work. What can we do to help with our financial situation? It is hard to get help due to the nature of TTP, that is, it doesnt seem to be taken seriously because its so unheard of and can go into spontaneous remission. Medicare/Medicaid processes have been started but its seems like niether will help. SRS and disability are the same, he has returned to work out of necessity which may disqualify him. He considered activating his Life Insurance Accelerated Benefits at some point but that requires you to have a life expectancy of 12 months or less. Since he is in remission he probably wont qualify for that either. Even though the life expectancy of TTP without treatment far less than 12 months. Has any of you had experience with any of those? Does TTP qualify you for any of them (Medicaid/Medicare, Disability, Accelerated Benefits, any other source) and know what he or I may qualify for?? Once again, best wishes to all of you. Thank you for listening and helping. Posted on 07/24/09, 09:07 pm |
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TTP is a nightmare. Especially, when it is rarely heard of or known about. Good luck to your brother and his recovery. We are all survivors of this trauma. The one with TTP and the family and friends involved. All of us recover differently from this illness. My bout with TTP was March 3, 2008. I also, had flu like symptoms and was taken to the hospital with mental confusion and slurred speech. 14 hrs later I was diagnosed with TTP. MY platelets were 6 and I was unconscious and in kidney failure. 17 months later I am doing wonderful. I am still on some meds and go to the gym to keep up with the strength in my arms and legs. The residuals I have are anxiousness, nervousness, balance problems, short term memory problems.... I did not apply for disability because I was not working at the time I became ill. I need to see a lawyer possibly to find out if I qualify. I wish I had applied. Money is tight and I also have medical bills that I am still paying. I was insured at the time so that is a blessing. My bill exceded 800,000 but that included a life flight ride by helicopter and an ambulance ride. I wish your brother the best in his recovery and these support websites are so good with help. Us TTP'ers are definately special people.
Mary Jo 
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I too am a TTP survivor, I am 50year old female with a 22year old son with Asperger's Syndrome and a 14year son. My episode was April 9th, 2009 - May 1st, 2009. And a relapse May 6th, 2009 - May 12th,2009. I was taken to the ER because of confusion and hallucination. Soon after I went into a coma for 7 days during which time I had a seizure & a mini stroke & also kidney failure. My initial treatment was 6 treatments of rituxin & plasmapheresis 1st twice a day, then once a day then every other day til my platelets were in the normal range. I am now in remission. My blood is tested every 2 week & I'm seeing a hematologist every 6 weeks. I am on no medication only ferrous sulfate 2wice a day. I seem to be healthy now with no medical problems. I am a little confused at times & some memory loss & other cognition problems. The doctors have no answers as to why or if my condition will return or future management. I am concerned for the future and seeking employment. Every around me is still nervous & advising me to take it slow & easy. While I appreciate how blessed I am now because the Dr's had advised my family that if I did come out of the coma I would probably be in a nursing home needing rehabilitation. I feel pressed to get back to regular life. I was lucky enough for Medicaid to pay my medical expenses. I had to move in with my Mother until I can find employment and get back on my feet. I have been searching for answers but have only found that this is a rare disease. I am anxious about what the future holds. Does anyone have any experiences for things to look out for. I welcome all you have to offer & wish you all good health. Thank you for someplace to come to share this time in my life I feel more comfortable about this mystery. Healthy life & happy living to us all.
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I was 19 when I first got diagnosed with TTP. Went 5 years without any relapse until July 2007 then in January and February 2008. I was qualified for Medicaid and still have it. At the time that my hematologist wanted to start Rituxan on me, the insurance that I had at the time when I was working dropped me on January 25th, 2008 when I was in the hospital and couldn't work to keep my benefits paid. So his office got me approved for Medicaid. But you might want to call the hospital where he was admitted to if they have anything like charity to pay for his medical bills cause I know the hospital that I was at offers it. That's something to check into. Hope your brother is doing well.
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