A variety of short stories that have been submitted to PDSA over the years. Click on the "Read More" button to read them.
Greg's Platelets Come Back
The last 6 weeks have been a real roller coaster!
I woke up the morning of the 4th of June with blisters in my mouth and red spots on my skin. I also had bruises on my legs and arms. My family doctor acted quickly and the blood tests confirmed what he thought. I had ITP.
I spent the next 10 days in hospital care. I was first put on Prednisone at 65mg per day to which I did not respond. On the fourth day IVIg was started and I spent the next four days being infused; still no change. By day 8, my platelet count was still under 10. Finally by day 10 my platelet levels shot up to 46. The doctors still wanted to go ahead with the Vincristine that day in preparation for the splenectomy which was booked in to be done a few days later. Thankfully I managed to buy myself some time and was discharged to see if my body could repair itself.
Over the next several weeks, my platelet count went up and down. I hovered between 20 and 40 and finally decided to try some alternative methods. By researching the itp people website I found that Moducare Sterinol had been of help to some treating their ITP. I traced the supplier to an Australian distributor who put me in contact with a Natural Therapist only minutes drive from where I live.
I explained my situation to the Therapist. Basically I had a month to get my platelet levels above 80 or the doctors were going to remove my spleen.
He put me on the following:
Metagenics Immunocare (Moducare)
Innovative Therapies Leucostat (polypodium leucotomos dry leaf extract) for Immune balance
Ferrasorb (Folic acid, B12, Iron)
Mediclear (nutritional dietary supplement )
4life Transfer Factor Advanced(Bovine Colostrum Extract)
Within 18 days my platelet levels went from 39 to 152.
Now I’m not 100% sure which these products (maybe all of them) made the difference or how much of a difference they actually made. But what I do recommend is that anyone in the same situation as I was gives them a go. It’s surely better that losing your spleen.
I would like to thank those who have put together and contributed towards the ITP people website. The hardest thing I found with ITP was understanding it. The website gave me the answers and provided excellent statistical results which in turn led me to alternative treatments and quite possibly my solution.
Please contact my Therapist if you have questions:
My name is Ralph and I am 56 years old. My introduction to ITP began last October following a trip to the emergency room. My platelet count in the ER was 3,000 and was accompanied by soft tissue mouth bleeding and petechiae on my legs. For the next six or seven weeks doctors followed an increasingly aggressive treatment plan until I could be stabilized. Counts climbed as high as 45,000 following hospitalization and initial treatment but abruptly settled back into the 8,000-12,000 range afterwards and on several occasions dropped into the 2,000-3,000 range again. Platelet transfusions were necessary four different times. Other treatment included IVIG, GammaGlobulin, WinRho, Prednisone, Laproscopic Splenectomy, Bone Marrow Biopsy, Chemotherapy (Cytoxan and Vincristine) and lots of prayer.
Shortly after the first chemo treatment in early November my platelets returned to pre-illness levels and higher. Further chemotherapy was suspended and Prednisone dosage of 120 mg/day was tapered off. No other medication has been required since and platelets are currently in the 545,000 range but have fluctuated gradually between 235,000 and the current level.
I recently had a hernia repaired that developed near the primary splenectomy incision. Surgeon speculates that high Prednisone dosage may have been a factor in retarding the normal healing. There have been no other complications from the repair surgery or the earlier splenectomy.
I believe prayer has played a key role both in the stabilization that occurred and in my ability to have carried on day-to-day during the interim. I also have had the benefit of excellent medical care and advice during this time including treatment review by Dr. James N. George, recognized leader in Platelet Disorder Treatment.
2009 Update: I continue semi-annual visits to hematologist where platelet count has steadily remained in the normal range. Other than initial experience with ITP about 6-7 years ago, there has been no further evidence or issues with disease. I have much to be thankful for and am!
-- Ralph RHeim@trailerbridge.com
I just wanted to share my experience with ITP and how I am able to raise and control my platelet count to normal levels.
Started my ITP experience 1968. When I was 16, I found out I was bleeding internally and got stuck into a hospital where the doctors diagnosed me with ITP. I got a splenectomy in 1971 and still had relapses. By that time I was so sick and tired of prednisone that I decided to live life dangerously because the quality of life not up to my expectations and the side effects were driving me crazy.
During the time between discovery and splenectomy my family had been consulting Chinese doctors and Chinese herbalists as well. Not much progress. So I moved to Los Angeles, and for the next ten years or so lived a careful yet unmonitored lifestyle. Every now and then I would notice the tell tale signs of the capillaries rupturing and gums bleeding so I would just lay low.
In the past 5 years, I've had two major bouts with low platelet counts where I had to be hospitalized. This last time they couldn't even count them by machine. They had to do a hand count. I decided it was time to take some action outside the AMA.
I started had Tai Chi Chuan and Medical Chi Kung. Also, through the recommendation of a few Chinese doctors I started brewing a Chinese herb called Shan Dong, HOKOU CAKE, (Asses's Glue). Cantonese pronounce it "aw gow" And it comes in 16 OZ solid cakes. The scientific names of the ingredients are: Colla Corii Asini, Liquorice Root, and Rhizoma Cyperi. It can be bought in any Chinese Herb Store but it is also distributed by Herba Enterprise Inc.in San Francisco, CA 94103 and Brooklyn, NY 11232 and is a product of China.
I cook it into a soup using a process of putting the ingredients into a porcelain bowl and cooking it in boiling water for about 1/2 hour or longer. Each box has 16 bars, each bar is then broken up pieces to approximate quarters. I would then take the quarter bar, 12 oz. water, a small piece of lean chicken breast (less fat), and salt to taste later and put it into a porcelain bowl with lid. Then I would take the bowl and put it into a pot. I would fill the pot with water only to the level where the bowl would not take in water when boiling. Start the heat on high and then turn down once it reaches boiling to a simmer. Cook for half an hour until the "aw gow" is completely dissolved and then salt to taste. It makes a good tasting soup as opposed to other bitter Chinese herbal teas and medicines. And voila! instant health.
Now I can't say what exact combination of Tai Chi, herbal medicine, stress management, has given me a drug free (prednisone) life. But it has amazed my hematologist and internal medicine specialist. I stopped the medical chi gung because I had no patience for it. But now I teach Tai Chi Chuan and still practice Northern Shaolin Kung Fu and at age 46 can still do the splits. I even do my own martial arts stunts. (no high falls, pyrotechnics, or motorcycles)
I had inquired earlier the PR of our condition because I am one of the few actors I know that have this condition and the more visibility we bring to it the more attention, money, and research we can discover to help our doctor friends in the AMA.
I hope this can help some of you out there. I know you may be skeptical, but so was I in my initial Western blocked, instant results, mentality. Chinese doctors also told me that the brown paper-like skin of peanuts (not the shell) were also good in repairing the condition of low platelet counts.
Splenectomy - 34 Years of Remission
Hi….Name is Jim….I was diagnosed with ITP in March 1975 at age 21….looking back I noticed I was bruising a lot when I was in the 10th or 11th grade and everyone just said I bruised easily….I joined the Navy shortly after graduating from high school and the bruising got worse and worse….finally I went to sickcall and the blood test showed almost no platelets….I was admitted to Naval Air Station Jacksonville Florida Hospital where my platelet count was 7,000….I was put on prednisone and my count went up to 50,000 to 75,000 but no higher and when the doctors decreased the prednisone my count promptly dropped to 12,000….the decision was made to remove my spleen and my platelet count increased immediately….it was 170,000 the morning after the surgery and 215,000 the morning after and after a week it peaked at 440,000….I was weaned off the prednisone and over the years my count has been 320,000 to 340,000….after reading the many stories of people who underwent splenectomies and numerous other treatments that either didn’t work or only partially worked I thank the good Lord for these 34 years of remission….my resistance to colds and flu is a bit weak and I had a bout of pneumonia 14 years ago….I cannot miss my annual flu shot and have to be very careful of tick bites….I am 55 now and look forward to many more years of remission and my prayers and thoughts are with all ITP patients….God Bless and love you all…. Jim email@example.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.
UPDATE: March, 2009
10 years later I am in a "good place" with the ITP. I had a SECOND splenectomy in 2000 after a piece of my spleen grew back. Since then my platelets have remained low but stable without any medication. The highest my platelets have been is 90,000, but they are usually around 50-60,000. I see the hematologist about every 3-6 months just to see how I am doing. The pain from AVN has improved dramatically and last year I was able to resume an exercise routine. I never lost the weight I put on from the prednisone, probably because of my age (over 50) and the lack of exercise. Overall, my health has dramatically improved and I can truly offer hope to those of you who have just been diagnosed. Please do not give up - it will get better.