Welcome to David's Story
We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep. How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’… Every ITP story is different. Enjoy.
A little bit about me
I’m 62 years old, and live in West Virginia. I’m retired from the US Army. Aside from the army, I worked as a cowboy and a tester for drivers for the DMV, among other jobs. I love deserts.
I was diagnosed with ITP in 1997. I was having trouble wearing heavy winter boots; they were bruising my legs around the top. When I mentioned it to my (army) doctor during a routine checkup, he looked at my records and found I had a record of low platelets (60 or so) going back several years. He was very upset no one had noticed it earlier.
During Desert Storm, We talked to a camel herder in Saudi Arabia, and when we left to enter Iraq, he came by to say goodbye. He offered us camel milk; someone had to accept it, and I was the one that did it. I think I caught brucellosis, and that triggered ITP. Also I think my body acclimatized TOO well to the desert sun and shut down my vitamin D production.
I had many symptoms, but never thought too much about them. Yes, I was scared when I was diagnosed..
The first symptom I had (1992) was a scratch that didn’t heal. I had a stroke a year later but didn’t realize what it was. I was very tired and confused. I had a massive bruise from a soccer game – my entire right leg turned black. I went to (air force) doctors several times, but they never followed up on anything..
When my platelets drop…
My platelets fall every winter. I can feel when my platelets drop. I get sort of a hungry/light headed feeling and have spots on my legs, but the biggest tip-off is that my teeth turn bright orange from blood serum leaking into them. (below a platelet level of 10).
I’m airborne ( I jump out of planes), I’m a scuba diver and a rock climber. I didn’t really notice any stress.
I drink a lot of ice water and usually eat the ice in drinks. I do sleep hot at night, but always thought it was just because I grew up in the desert.
I don’t sleep a lot, maybe 6-7 hours a night, but when I sleep, I sleep hard. I dream a lot, and my dreams are vivid and memorable.
I don’t exercise a lot; my body is just getting too old. I walk a mile or two every day and run in place some. Exercise gives me a clean feeling inside.
I have a voracious appetite for grapefruit juice. Otherwise I think I have a normal appetite. The less I exercise, the less I eat.
I haven’t noticed any connection between ITP, low platelets and mood. But I doubt I am typical in that respect.
How has my life changed since your diagnosis?
I went from ignoring my health to paying very close attention to it.
Worst / funny injury…
I stepped out the door and felt a massive pain all over my body. I thought “Well, this is it. It’s all over.” Then I realized the pain was centered in my leg, not my chest; it was a cramp. I HAVE watched my potassium level since then, but – I did not die…
Dealing with ‘being sick’…
I have two friends who also have ITP. Otherwise, I pretty much ignore it. When I’m in the ER, I sit on the bed and watch the other patients. I have had two platelet transfusions in the emergency room. Both were pretty much worthless; my body flushed the excess platelets in just a few hours.
I have been taking prednisone since 1997, its a terrible medicine, but I guess it has kept me alive. It makes you gain weight, it gives you diabetes. Now that I’m taking Vitamin D, I’m tapering off prednisone; at least I’m taking much lower doses.
Around 2005, a doctor figured I was probably vitamin D deficient, and gave me calcium pills covered with a coating of Vitamin D. I developed calcium toxicity. (bone spurs, kidney stones, syncope, carpal tunnel syndrome, meralgia parasthetica) I took myself off of that pill. Later, I talked to one of my friends with ITP and she said her platelets had gone up after taking vitamin D, so I talked with another doctor. He gave me a vitamin D test, sent it off, and found I had a SEVERE vitamin D deficiency (6 out of a probable 100). After taking 5,000 unit a day for more than a year, my platelets have pretty much stabilized at about 50. I’m feeling much better than I have for years.