TTP Network

I have been ran through the mill as they say. Doing antibiotics three times daily until july 19 for a staff infection in by blood. Platelets at 500,000 after my treatments ended but, I had to go to the hospital for three days because of blood clots in my right arm, arm pit and shoulder. Now this came about at a time when I had finished plasma treatments on friday and the clotting happened on tuesday. Doctor thinks it was related to the port in my right chest and neck area so they removed it. As we all know, clots are treated with blood thinners. Doctors have me on low dose treatments and keeping an eye on my counts. I have faith in the Doc's and will hope for the best. Will take this time to wish all of my fellow TTP friends the best of health to you all and thank-you for all you do.

My 3rd time in 4 years , said good-by to my Spleen this time and pray that it never comes back again . Doing plasma exchanges M-W-F as out - p this week and talk to the docs about what else is needed . They have done a great thing with me to this point but it can not go on like this. My body is not going to take much more of this. High Platelets to all !!! JeffryHS0

hi

my name is lauren and i am 15 years old. in january i was diagnosed with TTP. i spent a little under a month stuck in the hospital getting treatments and trying to get better. it was a scary and stressful time for me. i was not always sure what was going on especially when i was first admitted because my count was so low and i was very confused. when i first got the line for plasmapheresis it was in my leg but after a few days that line stopped working and i had to get another line put in my neck. i got very bored in the hospital and because the hospital i was in was a good hour away from my hometown so it was difficult for my friends to come visit me. the weather was also horrible during my stay which caused even more trouble for visitors. but many people were able to come up to c me which made each day a little easier. during the time i was in the hospital i missed out on many things. i was supposed to be in a play the first weekend i was in the hospital. i also missed my church music trip and then a church high school retreat. i missed a lot of school and it took me a long time to get caught up with my work. during my hospital stay i became depressed for a few days but my family, friends and hospital staff helped me get through those few days. my friends came and decorated my room with some decorations from the play i missed and they hung out with me. a few times my friends helped distract me while the nurses had to put a new iv into my arm. my family and friends are what really helped me get through those weeks i was stuck in the hospital.

after i was released from the hospital i was welcomed home by my family and friends. i went up to the hospital a few days after i got home to get the line taken out of my neck and to get my third dose of rituximab. (i got 4 total) I had to go up to the doctor every few days so they could check on me and whatnot. i still go once a week for a check up and blood work.

during my hospital stay i was on bed rest for at least a week which caused me to loose a lot of strength in my legs. now i go for physical therapy twice a week. i started going back to school in the beginning of march, going for half the day to try to save my strength. but i became sick with a very bad cold that still hasn't gone away so i have recently stopped going to school again and am receiving home bound instruction.

my life changed drastically from TTP. i learned just how strong i am and saw how many people care about and love me. i had to overcome my fear of needles and blood. i am a stronger person because of this. i did not enjoy it and it makes my life a little harder than it was, but a bit of good came from it.

(cars should enter by Roehampton Gate or Kingston Gate)

Hi

I've had a call from a news agency in the UK.  The journalist is looking to write a story about someone with TTP.  The story will either go to many national newspapers or just one.  The journalist is happy to work with the patient/family in writing the story and ensuring accuracy.

The ulitmate aim is to raise awareness and encourage blood donation.

If you are interested in taking part in this article here are the things that he is looking for:

• UK resident
• Preferably school age but not essential
• have experienced TTP first hand

If you wish to be considered please email me at ttp@ttpnetwork.org.uk  

Kind regards

Jo

Hi all

Hope everyone is well.

I'm doing ok-ish. Moved into my own house in Feb, just five mins from my mum's so she doesn't worry about me too much. I'm loving the independence and being on my own isn't a problem cos I have my two dogs to keep me company. Plus my brother has been staying a lot - he's been accepted by the Army so he'll be away pretty soon for a LONG time. He lives pretty far away so I usually don't get to see him much so it's been good.

My bloods have been fine recently, a small dip in my kidneys caused by severe dehydration a couple of weeks ago has thankfully fallen again to my 'normal' creat. level. I still have good days and bad days, and still have nights when I'm totally exhausted but can't sleep. The only real problem I'm having right now is gagging every time I take my tablets. It started around the beginning of the year, and it's only gotten worse. I emailed my doctor about it, as I'm pretty sure its psychologically related, but she doesn't seem to want to even consider this. She suggested perhaps I am a mouth breather at night, and that my throat is just dry in the morning when I'm taking my meds, that I just need to take a drink before I take the tablets. However, it's not just in the morning that it happens. I take meds three times a day and it happens every time. Besides, there are some nights when I am up all night anyway and take them before I go to sleep in the morning. And I have always (even before TTP) taken a drink before taking any kind of tablets to make sure my throat isn't dry.

I've been taking these tablets for almost 6 years, and it's only in the last few months this has been happening. It gets so bad sometimes that I choke, and a few times I've almost been sick.

Does anyone else have this type of problem?