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.

HIV and ITP

Hi! My name is John and I have recently been diagnosed with ITP and I am still fighting this battle with a platelet count of only 9,000.

My story began this past October when I was diagnosed with HIV. At 30 yrs old I felt the walls of my life begin to fall around me. I set the appointment with the doctor the following week to see how far my infection had progressed. During this time I had noticed some spots that had appeared on my hands and legs and the following day I began to have nose bleeds and blood blisters inside my mouth.

The next day, when I showed the doctor the symptoms that had occurred he immediately ordered a lab test to check my blood. After having my blood test and as I was waiting for the doctor with my results a lady passing by were I was sitting noticed that my whole arm was covered in blood. I immediately went back to the lab were they tried to apply pressure to stop the bleeding. This is when I found out about my platelet count only 2,000.

I was told to go straight to the hospital were a team of hematologists were waiting on me. The anxiety and fear set in. The team has decided that I have ITP. Over the next month I received a bone marrow biopsy, IVIg treatments, anti D, 2 blood transfusions, 2 platelet transfusions, had my spleen and gall bladder removed. (on top of all this I had gall stones) and chemo therapy. After a month my platelets were only 16,000 and no luck with prednisone, cytoxan or danizol.

It is now March 1998 and I only have a count of 9,000. What next? Tomorrow I go to the doctor to get a new count. Keep your fingers crossed.

If any one knows or has HIV related ITP and you have some words of wisdom please e-mail me a jnhj@hotmail.com

Sweet Sixteen

Hi. My name is Janie Wellnitz. I am currently sixteen years old and a junior at Whitewater High School. In May of 1998, I was diagnosed with ITP. For four weeks, I was constantly noticing large bruises all over my body caused either from playing softball or for other unknown reasons. Sometimes, I would get hit by the ball during practice and later, there would be a large bruise on the area where I was hit. I really didn't think much of it first, but the bruises got worse and the time went on. Finally, my parents took me to the hospital for a blood test. That night, after I returned from a softball game, the hospital called and told my parents to have me admitted immediately because my platelet count was at 3,000.

The doctors questioned me for hours on everything that had happened over the past month. Because I had no symptoms of a cold nor was my spleen enlarged, the doctors don't know why my platelet count had fallen. On my legs, they noticed little red spots, which is one sign for a low platelet count. That night, they started me on 60 mg of steroids. The next morning, a hematologist did a tests to see if my bone marrow was producing the platelets and to look for signs of cancer. The leukemia test came back negative and in fact, my bone marrow was producing plenty of platelets.

For eight days, they kept me in the hospital, primarily to be sure that I didn't start bleeding. Every morning, they took a blood sample to check my platelet count. On day three, the count reached 5,000, but unfortunately, on day four, it dropped to 4,000. Finally, they decided to give me immune globulin through an IV for two days. This was to stimulate the immune system and the antibodies that were attacking my platelets. On day eight, my count had reached 23,000 and they released me from the hospital. The next week, I returned to school and desperately tried to catch up on my school work. On May 14, I had another blood test. To come to find out, my platelet count had plummeted to 6,000 again.

So, currently I am on Dexamethasone, a very potent steroid, for four days. If this fails to work, they will consider removing my spleen. This will not occur until we talk with the specialists at the University of Wisconsin-Madison. I am desperately dreading a splenectomy, for on June 16, I plan to depart on a two-week vacation in Costa Rica.

The past couple of weeks have all been so new to me, and I just had to tell someone my story. Please send me any information or stories you have to jmwellnitz@hotmail.com I hope all those out there who suffer from ITP have a fast and safe recovery. I send my deepest wishes and prayers to you all.

Beyond Splenectomy, Pred, and Dred

Despite encouraging statistics and strong recommendations from my consultants, splenectomy did not appear to work (initially) for me. Within weeks, my counts had crashed to 12. (Before splenectomy they had fallen below 10 on several occasions). The thought of pred all over again, and this time with azathioprine, threw me into depression and near despair. After a brief climb they then crashed to 8. Immune suppression was presented to me as the only option. Then I found this site...

Since then things have improved a lot. Encouraged by others' stories, I feel as though I have taken control of the management of the disease. I certainly have not turned my back on conventional medicine (I still see the hospital consultant every month and have counts via my GP fortnightly in between) but I have reviewed my whole lifestyle and researched the condition as much as I am able.

The turning point came in April. After pred and azathioprine were prescribed. I decided not to go along with the prescription. This was frightening but liberating. I also read with great interest the research into links with ciliac disease and decided to go on a gluten-free diet. I also began to take massive doses of Vitamin C, three times a week (4000mg). A week later I saw a different consultant - a highly respected hematologist. I confessed my disobedience over the azathioprine and his attitude was unbelievably refreshing. He said that I should never feel obliged to go on a drug about which I felt uncomfortable. He stressed that we were a team, that I had one kind of knowledge (knowledge about me) and he had another kind of knowledge.

Somehow, we had to make the two work together. I could not believe it. He made me feel sufficiently confident to make a second confession - that I had not gone on the pred, either! At this point he lit up with excitement: 'That's BRILLIANT, because your count has gone up to 68!' (that is a VERY high count for me - we generally celebrate when it reaches 40). He was delighted that I had not gone on the drugs and suggested that we continue to experiment with no drugs at all. He was fascinated by the gluten-free diet and asked me to log carefully any days where I lapsed or chose to come off it. For the first time in eighteen months I felt in control again.

My counts have sometimes dipped but even if they fall below ten, my consultant does not panic. He just says, "give me ring if they fall below 30 (but don't panic); come in and see me if they fall below 20 (but don't panic)". This takes the terror out of it - terror of the disease and terror of the treatment. Although my counts have sometimes fallen, each time they climb again and each time they climb a little higher. My last count was 109 - all without any drugs. I continue on the gluten-free diet and the very high doses of Vitamin C. I also take spirulina and lots of linseed (recommended by other sufferers). I feel extraordinarily well. I don't know why I have this sense of well-being, but even if the gluten-free diet turns out to have nothing to do with the ITP, I think I will stay on it, as it makes me feel so well.

I have no idea what will happen in the future. I am not naive about the condition and know that my counts could easily dip again, but I cannot believe that my new state of mind has not been helpful. Conquering the fear is half the battle in living with ITP and, who knows, it may play some part in conquering ITP itself. Why does our immune system go out of focus in the first place? I don't know. For the first time, I have found a consultant who seems interested in deeper questions, who seems genuinely interested in ME, rather than treating my body like some kind of machine. The fact that I had a divorce 6 years ago, that I am a high-energy, high-achieving, lively workaholic may have something to do with it somewhere. I am a university lecturer who thrives on the generation of ideas but is also exhausted by them. How can all this NOT be relevant? I still work very hard but I attend to my emotional and physical needs in a way I never did before. In finding a conventional medic who is interested in the whole me as well as being an expert in this particular autoimmune disease I feel as though I have struck oil. He does not derogate different kinds of knowledge.

I want to stress that I am NOT anti-drugs. After all, initially, prednisalone (together with tranexamic acid and a lot of norehisterone!) was essential and probably saved my life. The symptoms I first presented (and have experienced since) included a period which was flooding out of control: I was losing so much blood that I was afraid I would not get to hospital in time. Without my doctors' quick and correct diagnosis and appropriate drug treatment I dread to think what would have happened. I have also been fortunate, in the main, in being looked after by an excellent team of experts. But there is more than one way of constructing knowledge, and if the patient is left out of the knowledge-construction process, then deeper problems (perhaps causal ones) may be compounded.

Thanks again, for a wonderful site. I hope this little bit of my (ongoing) story will provide some encouragement to someone somewhere.

-- Christine

Danazol Success

My name is Ralph and I am a 55 year old sufferer of ITP. Prior to diagnosis, I was a marathon runner, active member of a gym and hold a second degree black belt in karate (not a good thing if you have a tendency to bruise and bleed). After a succession of treatments with Decadron, platlet infusion, IV gamma globulin (which caused anaphylactic shock and seizures that almost killed me) and finally prednisone, my count bottomed out at 2,000. Just prior to actually having my spleen removed, a remarkable physician in Long Island, New York started me on a new treatment with Danazol. After about one month of treatment, my count went up to 122,000 and is still climbing. If you would like more details about my experience and treatment let me know.

-- Ralph

Healthy Family

My name is Karen Hughes and I was diagnosed in April 1977 at the tender age of 18 with ITP. I had most probably had it for at least six months before they diagnosed me. I had a knee operation in the fall of 1976 and they could understand why I had a hard time clotting. It wasn't until I started bleeding from the nose and mouth that my parents were alarmed. I saw my pediatrician and he took a platelet count. It was 11,000.

I was young and ignorant as to what this meant to my life. I was 18 and full of life. The doctor immediately put me on prednisone and I blew up like a balloon. In the meantime my hematologist did a bone marrow test and aspirated the bone marrow with only a topical pain killer, he took it from my sternum. I didn't realize that it was going to be painful until he told me to hold unto the sides of the table. It wasn't until I was much older that I realized that he was not doing it correctly. It was painful and I felt humiliated. My parents took me to a hematologist at UCLA Medical Center. He wanted to admit me because my count was 7,000 but I wanted to go to school and graduated with my class. I remained on 100mgs a day until they removed my spleen in June of 1977. This was done at UCLA. I thought that I was cured. I was released from the hospital because my count went up over 500,000. I felt I had a great summer ahead of me. I went to the beach a few days later and I lost my balance and fell, later that night I couldn't breathe because of the intense pain in my shoulder. I was readmitted and my count was 4,000. We were devastated and the summer from hell started. They started me on 100mgs of prednisone and I stayed at that dosage until Sept. of 1977. I got very week from the steroids and eventually I needed help getting up out of a chair. My nephew had been born that year and playing with him is what kept my spirits up. I then went back to my own hematologist at my medical group and he started me on vincristine. We as a family were very ignorant about ITP and at that time there wasn't a lot of information about it. We were at the mercy of my doctor and what we felt he knew. He was administering vincristine without an IV drip straight into my veins. He missed a couple of times and the chemo burns were very painful.

The counts would stay up sometimes for 6 months or so and then I would go back for a vincristine treatment. It seemed very manageable. In that time I met my husband and 4 years after my diagnoses I went into a long remission. It lasted almost 4 years to the day. It was after the birth or my second daughter that I noticed those little red dots. My daughter was 4 weeks old and my platelets were 15,000. When I look back I realized that it must have been back for sometime. I didn't know of the dangers of ITP and pregnancy. My OB didn't seemed concerned about the ITP. He most probably felt that I would stay in remission. I was very blessed to deliver two healthy girls without any problems.

I then went back to my hematologist and since the last time I had seen him I had married and my husbands insurance would not cover my preexisting condition. To say the least the disorder came back with a vengeance and I saw him for 2 years receiving vincristne every two weeks. He missed several times and each time I saw him I would pray that the Lord would guide his hand and find my vein. Needless to say we owed him a lot of money and we were a young couple with two small children and it was very difficult to pay. Then one day he said he couldn't treat me anymore because I owed him too much money. I had a count of 20,000 and he gave one last shot and he told me to go to the county hospital. I was devastated! I felt that this man held my life in his hands! Actually it was the best thing that ever happened to me. I then had to become proactive in this disorder. I vowed I would not allow a doctor to ever blindly treat me again! I regained my dignity and I grew up!

My pastor helped me to get a recommendation to the City of Hope in Duarte, CA. I was called by a hematologist from there and he said he was concerned about my count and wanted to see me the next day. When I saw him, this was August 1988, he said he was concerned about the amount of time that I had been on vincristine. He wanted to give me one more injection and then talk about other treatments. When they came in and hooked me up to an IV I wanted to know why. The nurse said that this chemo is very caustic and that it needed a drip to be administered. When I told him that I had never had a drip with it he shook his head. He treated me with so much dignity that I started to cry.

When I went to the doctor I told him that there were two things that I would not do, prednisone and a bone marrow test. He agreed, and through his ways of informing me and treating me as a "CO-physician" to my body I agreed to certain treatments when they were necessary. I have had counts as low as 3,000 and then I knew I had a responsibility to my husband and children to do what I needed to stay healthy. Yes, I have taken prednisone again and I hate it just like everyone else. Then in 1991 we started gamma globulin treatments and they seemed to be doing well. The day I spent in the chemo room made me grateful that I didn't have cancer. This disorder was just an inconvenience in my life. I felt that if it wasn't this it would be something else.

In 1993, my husband and I decided that since the gamma globulin was a natural blood product that we should consider having another child. We had felt that option was taken away from us in 1986 when the disorder came back. We talked to my doctor and we a saw a high risk pregnancy doctor, and they gave us the green light. We got pregnant in April of 1993 and gave birth to our third daughter in December 1993. It was a trouble free pregnancy and they monitored me very closely. I went into remission it seems the moment I got pregnant. I am still in remission 6 years later and I forget sometimes about the ITP. It is almost like a bad dream. I wish I had had information like this web site offers 22 years ago. I would not have made some of the mistakes I made mostly out of fear and ignorance.

Life right now is good. I like the fact that I'm not spending a lot of time in chemo rooms and worrying about if I should shake my head after a shower. I still notice any little bruise or spot. I have to remind myself that a certain amount of bruising is normal. I still celebrate that I don't bruise if I accidentally run into a door jam or fall. I celebrate my children and my husband for all the times I had to come first because of ITP. To all of you who are still suffering with this I understand your fear and frustration. You are my reality and you remind me not to take this remission for granted. You can E-mail me at KH3girls@aol.com

God Bless You All!

-- Karen

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