ITP Personal Stories

Short Stories

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Don’t always trust lab results!

Like some of you, I have succeeded in maintaining safe platelet counts without prednisone. I was diagnosed roughly three years ago with ITP at the age of twenty. My involvement with the Penn State Cross Country program required complete blood counts, and the team doctor referred me to a hematologist when my platelets numbered around 50,000.

They were monitored closely for a year, during which time they hovered between 30,000 and 70,000. When they reached the low of 30,000, a bone marrow aspiration was performed, revealing normal marrow. Lucky for me, my hematologist advised against using prednisone. He said that since they weren't decreasing in numbers anymore, steroids weren't necessary.

Since then, they have remained low (between 30,000 and 70,000), but have never gone beneath 30,000. I've gone two years without ever taking any sort of medication, and have remained in this relatively safe range. My first hematologist said that so long as your platelet counts remain stable (don’t follow a steadily declining trend), then there's no reason to panic. Small fluctuations are natural, but steadily decreasing trends over time should be watched carefully.

Recently, my wife and I moved to Miami, and I had my first platelet count in over six months. It was done through the University of Miami. The morning after the lab work, I got a phone call from my new doctor. "You're platelet count is 7" he said. "Are you having any bleeding or bruising?"

"No," I said, worried. "I look fine and feel fine."

"Okay. Then we can wait until Monday to test you again, just to make sure this is correct. But don't play any contact sports over the weekend"

So I went back to the lab at the U. of Miami on Monday and had blood drawn again. Tuesday morning a nurse called me at work. "Your platelet count is 3," she said. "Are you having any bleeding or bruising?"

"No," I said once again. "I look fine and feel fine."

"Are you sure?" she asked, unbelieving.

"Yes. I look fine, really," I said as I nervously scanned my hands and arms for any signs of trouble.

"We need you to go to a hematologist at Baptist Hospital today. In the meantime, don't drive or go anywhere. Just go to the hospital at 2:45."

So all morning I was worried and thinking the worst. I had to leave work to go to the hematologist. They took more blood and counted my platelets, both "by hand" and "by machine". I met the hematologist, and asked her what the results were. She showed me - they were 41. "Yeah, the machine at the University of Miami isn't very accurate, she said. "Our machine here is much better."

"Are you kidding me?" I said. "Was their machine built in Russia in the 1980's or what?" She laughed, but I didn't really think it was funny that because of that faulty machine, I had spent the whole weekend and especially Tuesday thinking that I'm on the verge of brain hemorrhage.

So basically, the whole thing was a false alarm and I'm fine. I'm going back to Baptist Hospital Oncology in two weeks to have a CBC, just to be on the safe side. But let this be a lesson that lab results are not always trustworthy. I would have gotten about as accurate results by calling a psychic hotline to find out my platelet count.

-- Josh joshuabrashears@hotmail.com

Adventures with ITP

I was first diagnosed with ITP in 1993, when a routine physical showed a platelet count of 50,000. On a follow-up check, it was 19,000. During 1993, the count fluctuated from 17,000 to 90,000 - with most results in the 20,000 range. Of course my doctor ordered the full range of tests and went through the various treatments. When it came to the splenectomy, I could not understand why anyone with low platelets would intentionally get "cut open". Being as stubborn as I am, I refused the operation and tried various other treatment. Prednizone made me put on weight, Gamma-globulin brought me close to death. This is not to discourage anyone from those treatments...everyone is different.

Looking back at my childhood, I had several severe, spontaneous nosebleeds, and if I ever had teeth pulled, I bled for quite some time. Why did not blood test show this condition until I was 26 years old?

Since these attempts at treatments, I have decided to let nature take its course. Although I work out and exercise more, I basically eat the same foods I always have. But my own, uncontrolled study showed the lower counts were produced on stressful days, or during stressful periods in my life.

I continue to have my count monitored, but not as often. My count averages 45,000-50, 000. My doctor cringes when I tell him of my basketball games, mountain biking, and rock climbing. Although he did sign a release for me to get scuba-certified, he recommends I get checked prior to my dive trips (I should note that he also is a diver, and is familiar with the pressures associated with diving. I also provided him with information from DAN - Diver's Alert Network).

Why don't I have severe bleeding and/or bruising constantly? Especially after the mountain bike accident two days ago? According to my doc, my platelets are filtered so quickly, that the ones I do have a young and strong.

I do not ignore my condition, but I also do not let it rule my life. My advice to anyone: Explore your options, and chose what you feel is best for you.

-- Chris (drxerox@warwick.net)

Successful ITP Alternative Treatment
(Get Well International)

In September 1999 I went for a checkup at Kaiser Permanente. My physician noticed many bruises. (I was aware of many bruises in the previous six months but I did not consider them serious enough to consult a physician.) She suggested I get a complete blood count (CBC) that afternoon. The following morning a hematologist called to arrange hospitalization due to low blood platelet count (8K). I received IVIg and Prednisone (60 mg) for three days and returned home with 120K platelet count. I continued the Prednisone (60 mg) and tolerated CBC's weekly. A week later my count was 190K; the following week it dropped to 97K. My count fluctuated over a wide range, but generally up, as I tried Danazol; unfortunately my liver objected to it, so I had to stop taking the medication.

Apparently due to the high dose of Prednisone I continued to take I developed a serious osteoporosis condition. To try to rectify the osteoporosis I tapered off the high dose of Prednisone. Some other side effects I experienced were dizziness, hair loss, unusual tiredness, blurred vision and mood changes. I did considerable research to learn more about ITP. I carefully read ITP: A Practice Guideline for the American Society of Hematology as I looked for other options. I tried one of the many possible treatments discussed there: ascorbic acid (vitamin C). It seemed to help for about three months as my platelets increased remarkably, then the platelets slowly declined as I continued to taper off of Prednisone. Soon my hematologist recommended a splenectomy. I continued to seek an alternative to that classic therapy. Finally, I searched until I found ITP People on the Internet. This was most helpful in learning about the disorder. I read the short stories and focused on Leonor's Cure who had success with Dr. Hoang’s treatment.

Eventually I contacted Dr. Ba Hoang at Get Well International, in San Jose, California. I was very impressed by his ITP experience and decided to try the herbal teas. I first spoke to him, and tried his capsules, while still tapering off of Prednisone. My platelet count dropped regularly as I reduced Prednisone; my hematologist became increasingly concerned and reminded me of the splenectomy option. So, after several weeks of IVIg treatments and even a dose of Vincristine (chemotherapy), I had resigned my self to surgery. My Dr said there would be no side effects with the Vincristine, however, I had experienced extreme head pain for three days and numb fingers for several months. The following day, I talked to Dr Ba Hoang, who convinced me that he could treat my ITP condition successfully. Dr. Hoang diagnosed my condition as atypical ITP. For approximately 12 months I drank the tea twice daily, before meals. I enjoyed the taste of the tea; its flavor is similar to coffee. At the start of Dr. Hoang’s treatment my platelet count dropped from 81K to 8K over several months and gradually increased 2K for the next couple months, subsequently 13-21K and the past two months my platelets leaped by 126K. Not only did his tea treat ITP, but also he amended the preparation to treat the osteoporosis and also to provide hormone replacement. I experienced no side effects. This was a great relief considering the many side effects of glucocorticoids I experienced in the traditional medications and treatments.

In February 2002 my platelets reached 190K. I am so grateful for Dr. Ba Hoang for demonstrating his concern and care throughout the treatment.

-- Marti mayers@qwestonline.com

Feeling Good on New Diet

My story began in 1996 when I became sick with Hodgkins Disease. After going through chemotherapy and radiation, I successfully beat the disease.

In August 2001, after I noticed bruising and petechiae, my platelets were <1000. I was diagnosed with severe ITP, resistant to all treatment (prednisone, gamma globulin, splenectomy).

In January my hematologist put me on a mixture of danatrol (600mg per day) and prednisone (60mg per day). I’ve spent the most of my time with my platelets lower than 10,000, until February 2002, when things seem to get better. I’ve stopped prednisone 3 months ago and I will stop danatrol in two weeks. And now with almost no more treatments, my platelets stay over 400,000. Why and how? I've changed my line of work (I was working in analytical and organic chemistry fields) and I avoid any contact with gasoline. I follow a diet recommended by Dr. Seignalet (a French doctor) since August 2001. I don't eat any milk and its derivatives (cheese etc.) and I avoid high temperature cooking and cereals except complete rice. I am eating more vegetables and fruits than ever before. I have to say that even after splenectomy, after six long and hard months, I finally feel good.

-- Christian augier@ensam.inra.fr

IVIg, Dex, and Vincristine

I am a 42 year old female, I was diagnosed with ITP in April 2001. Previously I hadn't been to a doctor in five years. I had been bruising on my arms and legs for about 12 months and thought that this was a family trait because my mother bruises easily. I also had extremely heavy periods, but I chose not to go to a doctor about this because I thought he would want to do a hysterectomy. I have four children ranging in age from 23 to 13. I was forced to go to the doctor by my husband because of the flu; it had gone into my ears and I could not hear very well. I thought I could take some antibiotics and I could get back to work. I mentioned to the doctor that I had been bruising for quite a while, and he suggested that I have a blood test that day.

The very next day I had a call from my GP who said that the doctor at the oncology department of the hospital wanted me to go to hospital with out delay. My platelet count was 2,000. It was explained to me that I needed to go into hospital straight away, as there was a real threat I could have a brain hemorrhage. The doctor started me on 100 mg of prednisone straight away. The next day the doctor came to see me and told me that the prednisone was not working as my platelets had only gone up to 10,000 and that he should begin IVIg as well. I was in hospital for five days and was discharged with a platelet count of 30,000.

The doctor said that I needed to have my spleen out as soon as possible and this was arranged within three weeks. Within a few days of leaving hospital my platelet count had dropped to 12000, so prior to the operation I had to go to the hospital to have IVIg to get my platelets to a safe level for the operation. Three days postoperative my platelets were 81,000. I was still on 75 mg of prednisone a day. Two weeks after the operation my platelets had dropped to 30,000 again. Having my spleen out had proved to be unsuccessful. My doctor immediately bumped my prednisone back up to 100 mg per day and introduced danazol and a whole range of other drugs. Over a period of a few months of having blood tests every week and having all the dreadful side effects of the drugs my platelets were 148,000. The whole time the doctor was trying to wean me off the drugs. Eventually I was off the prednisone altogether, yet having weekly blood tests to monitor the situation. Unfortunately within three months my platelets were back down to 15,000. This meant five days of IVIg to bring them to a safe level; he also introduced Vincristine (Chemotherapy) and oral pulsed dexamethasone for three cycles. My platelet count went up to 220,000; I was very keen to go off all drug treatment as the side effects were affecting me badly. At 220,000 I went off all the drugs, which was February 2002. Since then my platelets have been around 75,000. I am hoping, even though this count is low, to stabilize around 80,000 with no treatment at all. I have discussed with my doctor the use of Rituxan as the next line of treatment if deemed necessary.

-- Glenda gleadow84@hotmail.com