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Is there anyone out there who has TTP/HUS?
19 years ago I was diagnoised with ttp,at that time no one knew what to do for thisat u-immune disease. I spent 18 months in the hospital,I have had it more that 4 times,and everything was experimental at that time,after 2 kidney transplants,1500+ transfusions of plasma,red cells,and plattlets,I contracted non a non b hepatis,which back then they said was no big deal.I lost my 1st transplant on my 1year anniversery ,and told I could no longer teach school.I went back on dialysis. Ialso developed allergies to everything!! I finally received my second transplant,and when it was time to go back to work ,I went back to retail,because it was something I did all through high school,and college. Three years later I fell at work and broke my back. I had hurt my back in high school after a car accident but PT fixed everything. The company I worked for said if I did not come back to work(my store was closing) that I would lose my bonus,my stock options,my insurance,and I would never receive a recomendation. My husband drove me to and from work so I could take enough pain medication,t6o be able to stand up. After my store closed I went to the workmans comp doctor on my plan. He gave me steroid shots but that did nothing,since I also took it as one of my imunosuppresants.He then decided to use acrylic bone coment to glue the shattered vertabreback together,and missed hitting the major artery &cemented it shut,and the extracementwent through the heart and into my lungs. Now Ihave just been told my hepatis is treatening my liver,transplant,andseveral other body functions. I am getting very frustrated,because my old company told me they would cover my costs,and it seems like as soon as i get my life back together the rug gets pulled out from under us. It has wiped out all of our savings,we owe my parents 50k plus that took out of their retirement fund to help pay medical bills and it never seems to end. I am usually an upbeat person,but I feel like this was the straw that broke the camels back. The pain is getting worse,and now I have to start interfurion shots again,and the quality of life is going down hill. It is so frustrating to work so hard for so long to get well,then get well 5 more times,and everyone who did this is walking around with great lives,and in the state of Texas they put a cap on malpractice suites @250k & there is no one who can wait out his insurance company,and yet if I spilled coffee on myself I could get 100million dollars. My parents and my husband have been very supportive,but they can only take so much esp. my parents as they get older, they worry all the time,and I feel so guilty for that and the fact that my husband has a full time job,and then comes home to cook and clean. He is such a trooper and he wants me to go through with the treatments but I don't think he really relizes what that intails,not to mention how sick it makes you. I saw a doctor after i got out of the hospital because he was the only other survivor,but he died 2 months ago from complications of our ttp.
Sounds like your been through a lot and you are still surviving. Number 1 no I have not experienced TTP/HUS but I have survived Sclerodermerma another autoimune diease. Scleroderma is the harding of all the connective tissues. I was sick from age 10-14 and eveyone thought I was going to die. Well the Lord Jesus healed me and has given me a husband and two sons and a granddaughter. The wisdom the Lord has given me is to really take care of myself in eating organic foods and supplements. Look up Jordin Rubin"s "Perfect Weight" website and go to the local health food store and get his book. I've also been invovled with Natures Sunshine Products. They have an online survey to help you find the right types of vitamines to take. Doing a body cleanse may be your starting place.
I still have some aches in my joints but I'm fully functional teaching Severly multiple impaired children in wheel chairs. Most of my students have odd chrosome syndrones or cerebal palsy. From my illness the Lord gave me the gift of compassion to teach them. I will pray for the Lord to do a miracle in your life and for you to improve your quality of life.
In Jesus Name