ITP Personal Stories

Short Stories

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If you have an interesting or unusual story, you can send it to us and we will consider posting it here. It should be 400 words or less. A link to your e-mail address is optional. When you write, be sure to indicate that you want your story published in the Short Story section.

Sesame Oil

The reason I searched for your site is because I wanted to tell others who could benefit from the sesame oil. My son seemed to get it as a result of having too much antibiotics... and the last one he took had a warning that 1 out of a million may get low platelettes as a result.... I don't remember the exact warning because it's been over 7 years ago. His platelets went down to 2k. The gamma globulin did not help. I prayed for guidance, and I prayed fervently... God answered my prayers.

To make a long story short, my son and I were on a raw vegan diet, with seeds and nuts. That helped boost his platelets to 50k while he was getting off the prednisone. The diet was so hard for him though.

One week before scheduling a date for the spleen operation, I was guided to visit a Chiropractor who's also a nutritionist and a homeopath practitioner. He gave him sesame oil, because sesame oil helps the t-cells. His platelets went up to over a 100k, and the operation was cancelled... and the doctors at Children's hospital were not interested to know... One doctor told me, "Whatever you're doing, keep doing it"..... They just did not want to know. It took us about 2 years of research and difficult, difficult life.

I have a lot to be thankful for. I have changed after this experience, because I have experienced a personal relationship with the Creator... and I have compassion for others....

My son still takes sesame oil, and he's been at over100k for the last 5 years. We are no longer vegetarians, but we eat salads every day. He's a miracle boy.

My advice is:

1. Accept the fact that you may have to live with it , because that reduces your stress.

2. Try a vegan diet with lots of raw vegetables and sprouts.

3. Try sesame oil... It's cheap. Try adding sesame butter to hummus....

4. Remember that God is in control, and he loves us all very much, and he allows us to go thru difficulties in life for reasons we don't know... but that He is good, and He wants to make us like him. Some people may not see that God exist and that He is good during their difficult times, but He is.

Please let me know if it works for you... I hope it will.

-- Marlene mkosic@integrityonline7.com

Success with Imuran

My name is Rebecca and I was diagnosed in 1992. My situation was particularly scary because I work in a hospital lab and my good friends were hematologists. This ended up being a good thing when a found a compassionate physician who was willing to answer all my questions.

Originally, my counts were not that severe, but after a cold or flu (and I seemed to get a lot of them that winter), the count was down to 6K or less, and of course, I was on prednisone. In the spring of 93, I came into the ER with severe menstrual bleeding. I got the splenectomy (Its very hard to avoid!) and a week later my platelets were back down to 3K.

I was despondent. Even on 60 mgs of pred and they wouldn't go up!?! I found a counselor who helped me using meditation and visualization technique and the power of positive thinking to help me mentally. It did bring my platelets back up to 5-6K, so I could keep working, but mostly it kept me calm and searching for other options. My doctor and I "tried" different things IVIG, danazol, dexamethasone pulsing. But at the advice of my counselor, I quit trying.

I wanted to succeed and finally, I was put on Imuran (azathioprine), and it worked - slowly but surely over months my platelet count went up to 100, then 200K. I tapered off it and my platelets remained high -450K at my last count.

I want to emphasize that each case of ITP is unique, what works for one may not work for another, but there is something that will work for you, you just have to find it and focus on its working!

-- Rebecca (nyrosrm@juno.com)

Lisa's Ordeal

My story is somewhat different from the others because of the treatment. I was diagnosed with ITP in 1976 when I was 14, I was a freshman in high school. My first indication that something was wrong was a 31 day very heavy menstrual cycle. I did not talk to my mother about it due to my inability to speak to her about certain issues. Then about three months later I noticed bruising on my back, legs and arms, red speckles all over my arms and bleeding out of my ears. The bruises were very large in diameter (about 15" or larger diameter) and the bleeding was a slow trickle and for some reason I still did not tell my mother.

The final item (about four months after the first sign) that sent me to speak to my mother about it was one day when I was walking from school, many kids started chasing my friends and I for a freshman initiation prank. They were trying to throw us in the irrigation ditch. As I was running, I noticed blood coming out of my pores just like it was sweat. It stopped me dead in my tracks and all the other kids as well. I was in the center of a circle of kids who were watching my pores bleed. I was terrified. It was about a half a mile to our house and by the time I got there it had eased up but still it terrified me to no end.

We had Kaiser insurance but we lived in Nevada and the hospital was in California. We went the following Monday (four days later). I luckily had a doctor that knew the many things to test for. I immediately was tested for Leukemia, Lupus and ITP and had a bone marrow test. I tested positive for ITP and Lupus. My platelet count was at 6,000. I was told that I had a virus in my spleen, and there was no treatment for it, the virus had to just run its course. Which we were told was two to six months. I tested every Monday for six months without much change. The next step was to remove my spleen. I was removed from all physical activity which causes the heart to pump more blood which caused more bleeding. I was directed to not take any aspirin. I was taking vitamins and being very careful not to exert myself too much. Then, all of the sudden my weekly test was 20,000 and went up each week from that point on. So I had no treatment and my counts gradually went up. Within one year my count was 245,000. I am tested yearly and recently my count has dropped to 115,000 and I will be seeing a doctor this week, but this is now 23 years later and all has been well. Lupus is negative also. I was told that many diseases of the immune system can imitate signs of others. Over the years I have tested positive for Lupus and Rheumatoid Arthritis which have came out negative in follow-up tests.

I do have a severe thyroid disorder and thyroid hormone resistance (my body does not respond to the medication). The doctors believe it is all linked together and that vitamin D may have helped all of this during my younger years.

-- Lisa (maloneyandbell@gbis.com)

ITP and AVN

I was diagnosed with ITP in Dec. 1998 after I noticed large bruises that I could not account for. When my blood was checked, my platelet level was zero. I received a call at work to come to the doctor's office immediately, that there was something seriously wrong with my blood. Panicking, I returned to the doctor's and was immediately taken to the Hematologist who rechecked my blood to confirm the count and I had a bone marrow test (I never felt it, although I thought it was going to be extremely painful). After ruling out leukemia, I was sent immediately to the hospital to receive a gamma-globulin IV which gave me an extreme headache so I had to have a CAT scan to make sure I wasn't hemorraghing.

My count went up to a safe level but then it dropped back down to 27,000 within 2 weeks. I received another IV of gamma-globulin as an outpatient. My doctor recommended having a splenectomy rather than try any drugs because he felt it would just be postponing the inevitable. I was in such a daze from everything happening that I agreed. The splenectomy was not successful so I was started on 40mg/day of Prednisone in Jan. 1999. Nothing prepared me for what that drug did to me. I gained 35 pounds, my blood pressure went up, requiring medication and my nerves were so bad. I suffered terrible mood swings - angry one minute and crying the next. But the worst thing that no one warned me about was that the Prednisone caused me to have Avascular Necrosis (AVN) in my right hip and I have had trouble walking for over a year now. I will be extremely fortunate if I do not have to have a hip replacement. I have been living with the pain for a long time now hoping that I can get better without surgery.

Meanwhile, I have tapered off to 5mg of Prednisone but the Hematologist added 100mg of Danazol a day. When I was only taking 50 mg of Danazol my count went down to 3,000. I feel like I am on a roller coaster ride - constantly up and down. The thrill you experience when your count is up, and the disappointment when it goes down. I've gone through depression and a lifestyle change (I can't exercise any more because of AVN and I stay tired all the time). I have managed to continue working and I don't miss too much work although some days it takes a real effort to make it.

What has seen me through this is my faith in God and the support of my family and friends. I would be interested in hearing from anyone else who has developed AVN from the Prednisone or anyone who just wants to converse.

-- kathy.d.coker@fluor.com

Living with ITP

October 1997, I noticed the bruising. I've never been someone bruise so easily, but I dismissed it. It's easy to knock yourself in your sleep. Then I started to get the odd nosebleed, nothing major. Then my periods, regular as clockwork previously, got heavier and more frequent. Within six weeks I had four. Now I was starting to be concerned. When I started to cough up blood I went to my GP who immediately referred me to the local hospital.

At this point I still had no idea what was wrong with me. It was Christmas by now and I was nineteen. When I received a letter from the oncology department, one word rang in my head: leukaemia. I was so scared.

When I finally went to see Dr. Bell he told me that I had ITP. At that point I had lost 6 pints of blood (English not US) and my platelet count was 2. I tried steroids with no success. While intravenous immunoglobulin raised the count briefly, it soon sank back. It seemed having my spleen removed was the only option.

Well it's now 3 years later, I'm 22 and I still have my spleen. My count is only 45, but my body has adapted. My body is healing as fast as it ever did and my periods have settled back into a normal pattern. Now and again I have to take Cyklopran because it's too heavy, but most times it's fine.

I don't know if my story is of any use to anyone, but I thought it might give hope to anyone feeling as low as I did back in 97. I count my blessings every day. I know how lucky I am and I just want people to know that you can deal with this, even if it doesn't go away.

Update: Well it's now 2006, I'm 27 and about to start studying for a PhD in Egyptology and I've recently been told I'm in remission.

My thoughts go out to you all. I hope I can be some help

-- Bethan (UK)

Platelet Surprise

My name is Ian. I'm 34. I have had low platelet levels since I was a teenager. At the time it was discovered, I guess the level was not low enough to be considered a risk. Nothing was done and the condition was not monitored. I did occasionally get crops of spontaneous bruises, petechiae and blood blisters in my mouth. I also went through periods of several weeks most winters when I would feel weak and tired, with a slightly light-headed, foggy feeling in my brain. In retrospect, I suspect this probably corresponded with periods of low platelet levels.

Just over a year ago, my wife noticed how many bruises I was unable to account for, refused to accept my glib assertion that I'd be fine, and sent me to the doctor, who in turn referred me to a consultant. He decided that my platelet level was not alarming, but arranged for a bone marrow sample to be taken to check that platelets were being produced normally. It was not a traumatic procedure. It was found that I was producing plenty of platelets and that my immune system was wiping them out. It was agreed that my platelet level would be checked six-monthly.

A year later, my routine check found my platelet level to be only 20, and the doctor was quite concerned. However, I had had a cold, and she felt that my immune system had probably been unusually active because of this. She hoped my level would recover as the cold receded. Unfortunately, a few weeks later, I noticed a blood blister in my mouth. I went into the hospital to have a blood test done and my platelet level was found to be only 3. I was admitted to the hospital and put on 60mg of Prednisolone.

3 days later, my level was up to 30, and I was allowed home. 3 days after that, I was up to 90; 3 more days up to 150; another 3 days later, I peaked at 190. Over this period, my steroid dosage was reduced from 60 to 20mg. 3 days after my 190 peak my level slipped to150. I then went off for a highly stressful week away. When I came back my level was down to 33 and my steroids were put back up to 40mg. Has anyone else noticed a link between high stress and low platelets? A week later, I was up to 37, and a fortnight after that, 74. My Prednisolone was reduced to 30 mg.

I am due to see the consultant again in a few weeks. I will be arguing that the steroids do not seem to be working as effectively and I want to come off them. It seems to me that my body has gotten used to them. I wonder if I would not have recovered to this level without the brief 190 peak without them. I am also very reluctant to let them take my spleen out. I will submit any interesting developments to the website.

-- Ian (IanandLinda@imountford.greatxscape.net)

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