I was given conflicting information about ITP

Posted by Jerry @jbgeorge, Aug 13 10:34pm

1989 in the Army diagnosed with ITP I don't even put the numbers anymore because I have been told I could not have had those levels. Just going off what the Blood Pathologist was telling me. I was given a 20% chance to survive. Red Cross notifed my family and provided an emergency flight to be with me. And exactly the same thing again when I went to Germany. 20% and Red Cross emergency flight. Emergency splenectomy that's where the 20% came in was told I probably wouldn't survive surgery. I was told a lot of things that don't add up here that's why I don't really talk about this that much but I lost my mind while I was in the Army dealing with this and mental institutions over 30 times since then it's been a battle that is suffocating.

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John, Volunteer Mentor | @johnbishop | Aug 14 8:21am

@jbgeorge Hoping you find some relief in this long struggle you've had with this condition. Mayo Clinic does have some information on ITP including some suggestions that might be helpful if you haven't already seen it - https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/diagnosis-treatment/drc-20352330. You might also find it helpful to scan through the discussions on ITP here on Connect to learn what others have shared. Here's a link to the discussions, comments and more - https://connect.mayoclinic.org/search/discussions/.

bswpb | @bswpb | Aug 15 6:30am

I am sorry you had that experience but I am sure there is a lot of information out there about ITP. Did you finally find good information about ITP? Was this just a rant?

Becky, Volunteer Mentor | @becsbuddy | Aug 15 8:55pm

@jbgeorge this sounds very confusing for you and frightening, too. What specialists have you seen in the past several years? Have any of them said something different to you? And are you on treatment of any sort? Has anxiety become a major issue for you?
Do you currently have a therapist that you talk with? What do they say about the ITP that you have? Connect has mental health support groups that may be just what you need. I can give you a link to the discussions and you can check them out or not. You may even wish to join that discussion group. I’d love to know what you decide so keep in touch, please.

Becky, Volunteer Mentor | @becsbuddy | Aug 15 8:59pm

@jhgeorge hi, George, I see that you’ve already been in touch with the mental health group so I won’t give you any links. I hope that you will let them help you

ladybugg | @ladybugg | Aug 26 5:08pm

My husband had ITP he was on and off steroids for years to build platelets in his blood when levels were low. He was seeing a hematologists for this. He was diagnosed at age 16 passed of renal failure on dialysis at age 56 that was 6 years ago nothing to do with ITP. Sounds like you need a hematologist.

jrkittel | @jrkittel | Aug 27 8:34am

I was diagnosed with ITP 61 year ago at age 12. I was treated at Mayo with prednisone, with the dosage increased at each monthly appointment because my platelet count continued to be very low. When, after a year on prednisone, the platelet count was still very low, a splenectomy was performed. That cured the ITP and I've been fortunate to have had a good life since then. Despite losing the weight gained while on prednisone, I carry stretch marks over much of my body from the rapid weight gain. I have Sjogren's now and take CellCept to slow the destruction of autonomic and peripheral nerves by this disease. And I have celiac disease so my diet is very limited. I sleep poorly and wake up in pain every morning, but I play pickleball, take walks, and get in weight workouts, staying as active as I can.