Thrombocytopenic Purpura Support Group

I have had TTP since Oct.3, 2008---wow it is great to be alive! I am so glad to find this group--I felt so alone until now since I had never heard of TTP or anyone who had it! I am working on getting well---one foot in front of another ! I hope to talk to others would know more and are struggling with this out of the blue knock down! Thank you!

Hi Westy:

My husband had ttp and is still struggling with the side effects of it. Welcome to the group but wish it wasn't for this reason. We were the same way and had never heard of it either. My husband started with this on May 4,2008. When I get a chance I'll tell you about his ordeal with it. Send me more details of your ordeal and hopefully recovery. What was done for it etc. and if you have any questions feel free to ask. There are many great people in this group that will share their experiences and what they have gone through. They have helped us tremendously by sharing their experiences and knowledge. Most are doing better. Contact me at alice28rmc

Westy:

How are you doing today? Hope you are doing better and getting stronger all the time. A prayer and hugs to you. alice28rmc

Hello Alice,

Sometimes I can't figure out how to get around on this site! Gees---anyway, Thanks for the note! I have been thinking of you and hoping you all are doing alright! I am still working on getting stronger --it is a grind but it is a goal I realllllllllly want to reach! In the spirit, Judy

Judy:

Think of you and the others with ttp everyday. I'm thinking of becoming a group leader at the ttp forum just depends on how much there is to it. Now that my husband doesn't have to be at the Drs. or hospital every day or so thought that I could do some good this way. I try to tell his story and get to as many people as I can and thank you for the absolutely wonderful idea of having a blood drive. I am going to call the Red Cross and see what they have to say. Would have it in honor of my husband and In memory of his Mom who worked with the Red Cross for 30 yrs. at bloodmobiles in a nursing capacity, his father who who worked with the Boy Scouts for 50 yrs. and his brother who died of a heart attack at 65 and worked as a a radio personality in Sierra Vista Arizona for several years and always promoted the Red Cross there. Thought that my husbands illness would make known that there is such a thing as ttp and a little about his families service to the communities they lived in. Am hoping this would bring in some much needed donors for blood, platelets and plasma. Guess we'll have to see. I owe it all to you for the suggestion. Thank you so much. alice28rmc

Hello Alice,

Where is the TTP forum? The more we can tell people about this ordeal, the better we and others in the future will be!

I have my levels draw on the 31st--it is always scary but nice to see the numbers on paper! My levels fell from 240,000 to 185,000 this last time--I sure hope they have gone up or don't fall anymore!

I am walking and excercising everyday --it is hard but I am doing it ! Have a great week! In the spirit, Judy

Judy: As far as I know this is the forums where you post everything that you have been going through with your disease that you would like people to know. I have to find out more about it from Roy. I know what you mean about navigating through any place on the computer or internet. I am basically computer challanged or illiterate so don't feel bad. When I have a big problem or can't get to where I want to go I have to call my daughter. She works with computers all the time and can usually get any problems figured out for me. Once in awhile she will say I didn't know that you could do that on the computer or get to that spot etc. So I teach her something if I can remember how I did what I did. Hurrah It sounds like you are really trying to do more and accomplishing more every day. It is a tough struggle but keep up the excellent work. I really have to push my husband to do much of anything but not being able to do much myself I know exactly how he feels. Plus not having the same disease I never know how hard to push him. He's always been a hard worker and worked every day of our 40 years together except when he was sick with colds, flu, or the severe gout attack he had many years ago. He had never been in hospital overnight in our 40 yrs.I know this disease has put a crimp in his ability to do much because he gets so discouraged with being so weak. Just one day at a time I tell him. So glad you are feeling better and hope the pain is going away. Has your Dr figured out what it is yet? I correspond with krazymommy frequently at this point and let me tell you she is an angel. She has 3 children plus trying to take care of he daughter-in-law at hospital and keep on top of things there. Her daughter-in-law is doing better and out of ICU as of last night. I am so glad for her. I keep praying for all of the ttp people every night. Bless You. Prayers, Angels and Hugs to you. alice28rmc Contact me anytime.

Good afternoon everyone, I have good news and am trying to be optimistic, but like all of you I'm scared for what might come next cause it seems like ya just never know with this TTP stuff. Rachelle's platelets are up to 109,000, RBC and Hemo still low, and she got blood again today,along with plasma and dialysis. Heart surgery is no longer a concern at this point, but she still might have to do another C T fluid drain on the outer wall of the lungs. Here's why I'm scared DR.Danish, Hemo/Oncology says maybe come home on Friday... I'm thinking WOW, seems too soon what if something else happens? She will continue Dialysis, and Plasma exchange daily on an out patient basis, While I know this is a blessing, I also need to know the best ways to help her stay in good health so she can start to regain some energy. All your advise and input would be great.

Thanks to you all, and many prayers to u all.

Debbie

Hello everyone,

Rachelle didn't end up coming home, insurance reasons, but its a good thing, I didn't think she was ready any way, her platelets shot up to 141,000 yesterday, then dropped to 114,000 this morning. 3rd dose of rituxin given today, and she is being moved again this time to the oncology floor. I'm still waiting to hear from the DR"s at U of M, but they just got her records today. I need to remember patience, which I don't seem to have much of these days. Today is day 15 in the hospital.

Prayers to u all

Debbie

Hello Debbie,

Good to hear Rachelle is doing better! When I left the hospital and had to have more treatments, you are right, the insurance charged me an "emergency " copay every time I went back in for treatment! Ouch! 15 days in the hospital is along time -- the walls get closer and closer ! Hang in there , everything will start to get better! 114,000 platlets is in normal levels so I hope they stay there! I will have mine checked on the 31st---I try to stay positive and think good thoughts! We will beat this silly TTP! I am thinking of you ---be sure and take care of yourself too! Rest when you can! In the spirit, Judy