Personal Stories
These stories are about real people by real people and their survivors. Sometimes hemophilia is so unkown to the public but these tragic stories are an every day occurance in our community. Brave people who not only fought through the pain and suffering of hemophilia but battled HIV as well in an impossible situation against impossible odds. Courageous and loving people who were victims of the system and greed. There are stories here like mine, about a survivor who is still fighting the long hard battle and those who were'nt so fortunate.
To All , First of all, i like to say, i am glad for all the Inhibitor patients that the rFactorV11a (Novo-Seven) is approved in the States. It tooks a long time, i had to think about, to write this story, if i would write it to you , or not. But i keep my promise to my dearest friend by writting this, also its very difficult for me. It is an real story about a good friend of mine who lived in the States, and before i wrote this to you , i haved asked permission at his parents, they said they were very happy, to let the rest of the Hemophiliacs know , that, because of the death of there son, it helped the FDA to approved the Novo-Seven.
When i had installed my computer for the first time , and saw the Hemo.Support-group, the first thing i did was to ask if someone had an Inhibitor on the Hemo. B , mabye you can remember? Well Patrick Muscatell responded on it, it was the first of April, 1998 and our friendship was started.The only different between him and my son was, he was hemo A, and my son is hemo.B. but both they has an very high Inhibitor. Patrick told me about his problems with his bleeds , and i told him the same about the problems i had with my son's bleeds. So started the question about the Novo-Seven, if it was approved here he asked , and if i ever had heard about it. I told Patrick, that my son was on hometreatment on it, and he was glad that he had found someone who could tell him more about it. He told me that when he could proof to his doctor , and to the FDA ,that there were people who had done such operations with good result, he could have his knee replacement on the Novo-Seven. We talked and talked over and over again about it, i found a man who lives in Belgium , and he told me he had 2 hips replacements with good and perfect results on the Novo-Seven. I faxed all the papers to Patrick, and well the only thing we had to do was waiting of the answer , and permission of the FDA for the clotting. A few days after i had spoken with Patrick, he told me , he had an very bad bleed in his back- muscle, and the Feiba he used, wasn't worked enough to stop the bleed at that time.
A few days later they took him up in the hospital. The bleed was so bad , that it paralized his arm and leg, he was so suffering, and as bad as he was, the bleeds started in his intestines. The doctors had in the meantime permission to give him the Novo-Seven , and they made 2 operations on him to stop this bleeds, and he came through it. The Novo-Seven was working PERFECT!!!!!.on him. But then the bad thing came over him, the hospitalsuppy of the Novo-Seven was done , and after 36 hours without Novo-Seven, because ther wasn't no Novo-Seven to get in the hole States, he started to bleed internally, and he became in an coma ,because of the bleeds. A few days later on 14 August 1998, he died. The doctors had made an report of his case and haved send it to the FDA to make sure, and to press, that they, the FDA approved the Novo-Seven ASAP, because now they could show that it workes on him , so also for other Inhibitors!!! I am glad for all, who can get it now, just like my son gets it, that it is approved, but i am feeling also a great pain, to know that, first people like Patrick, my loving and best friend, has to give his live for it to proof that it has worked!!! I kept my promisse to you , Patrick, to let the people know that you has faight for it, the aproval, your battle with the FDA , you have won it , because its approved now. The FDA has given there permission to bring the Novo-Seven on the market. You have done the work you had to do, now you can rest and be free from the suffering and pain. Rest in peace , you have earned so much! Goodbye my dearest friend, Goodbye!
Karin -
My name is Kelly or Merlin as most people know me on the net, come to think about it there's not many except a few who know much about me. I was born in 1962 in Seattle Washington a hemophiliac. For those of you who dont know what hemophilia is, it's a bleeding disorder where your blood doesnt clot correctly when you get injured and you can bleed internally from mild trauma. There are many types and levels of hemophilia. I am hemophilia A classic and my clotting level is less than 1% which means my blood cannot clot by itself. When youre young and crawling , trying to stand/walk you get injured a lot. By the time I was 4 i had been admitted to the hospital 250+ times. I grew up mostly in Tempe Az, which was supposed to be less painful for me because they say there is less humidity here, whoever said that has never been to Arizona during the monsoons. When i was growing up i was supposed to be extra careful so i didnt hurt myself but i wanted to be like everyone else, i didnt want to be disabled, i wanted to be like the other kids. Me and my 2 brothers are only a year apart each in age, me being the youngest. I think it was hard for all of us as children to understand the implications of injury, but my brothers would take me with them to do things I wasnt allowed to do. In one way it damaged my body severely from internal bleeding but it also made me stronger as a person but in building that strength you go through alot of suffering physically and mentally.
Hemophilia isnt just a physical disorder it is often plagued with many social-phycho disorders for the hemophiliac as well as family and friends. I would wear out a joint until I was in constant pain i would go to the doctor and make them operate on me until i could use my body again. Im 38 and Ive had 13 joint surgeries so far, including my left knee, right ankle and right wrist fused, too many synovectomys, a radical synovectomy on my left elbow where the removed 1/3rd of the joint. 2 bleeding compartments where the muscle swelled so much in my forearm it cut the circulation off to my hand, they had to cut me wrist to elbow and pull the muscle up so the blood could flow to my hand. My life was chaotic to say the least growing up. I would work until surgery was needed then on disability until I could work again, back and forth like a yoyo. Because of all the surgey needed I never had a job long enough to really get anywhere. The best job I always fell back on was a Waiter, I could make quite a bit of money and in cash every day. I never really had any career goals because I was always told I was not going to live long so I never planned for the future, just for the day literally. With being able to work half the time and the other half healing I spent a lot of my time with my best friend Butch who I have known since I was 16. We were both part time musicians also and played for over 15 years together. We played quite a bit of live Improv Garage jams, Warehouse Jams as well as making videotapes and recording our music mostly on 4-track so we had the ability to remix and overdub some songs. This was put to an end in 1995 when in a surgery they cut my funny bone nerve in my left arm which controls about one third of the feeling in your hand. I never played again. And that worked for years and years up until this last year, i used to think i was like the bionic man- no matter what happened to me they could rebuild me.
Last year i realized that wasnt true. June 3rd 1999 i remember walking into the emergency room feeling very sick and my right knee was swollen, i had pneumonia and some rare type of blood piosoning of some kind that would abcess into my joints eating them away and within a few days i was in a coma. The infection is rare and not treatable with anti-biotics so they have to remove the infection surgically. At the time there was no operating room available so they did the surgery right there in ICU on my bed. With no anesthsia, just radical amounts of morphine and a medication called "Versaid" (I think thats how you spell it) which invokes memory loss. The next thing i remember was waking up in the hospital somewhere around August, and this time there was no fixing me. I had atrophy from the coma. My right wrist and hand was completely curled up, my feet had started to curl, the left one really bad and the right foot only my toes had curled. and my right knee had fused itself from lack of motion. luckily they were able to fix my right hand by Z cutting the tendons to lenghten them and pinning my wrist straight so i could use it again. After waking up and slowly gathering all the information about what happened and what was done to me, I can only imagine the horror my family and friends went through seeing me like that. Out cold, feeding tubes, the trach, respirator, IV's, fresh scars from the doctors trying to drain the infection, Im not sure if i could handle seeing someone i loved and cared about in that situation. Let alone all my friends on the net who were far away and only got info from my sister, brother and Tammy.
They even made me an Internet get well card to let everyone know how I was doing. Because they were giving me the memory loss meds I dont remember anything that happened between June and August. Because of the nature of the procedures and what they did they didnt want me to remember any of it, they even told my family and friends not to tell me but over time some of it has come out but not all of it. But i am still confined to a wheelchair for the time being, they told me i would never walk again but Im afraid i dont agree. This something that was and is very difficult to deal with considering how active i was before all this happened. Ive been in a state of shock since i realized i couldnt walk again. I know things will never be the same. But through all the negative thoughts i have to wonder why i lived through the coma. I sincerely believe I lived because I hadnt let everyone i know I loved them or got to say good bye, i had too many unfinished things in my life, most of these things I have now completed. According to the doctors, they didnt think i was going to make it and were shocked by my recovery. After 48 days in a coma they say you suffer irreperable brain damage and are basically a veg. I was out for 62 days and suffered 0 brain damage or memory loss. Also according to statistics if you were on a respirator for more than 10 days you suffer permanent lung damage, they kept trying to remove the respirator while I was in the coma but I couldnt breathe on my own. After 62 days they said i would be a veg if i did live so they were going to pull the plug on me. When they shut the respirator off and removed it I was alive and breathing on my own. Also because I lost the use of my right hand for about 5 months I had to learn how to do everything left handed. This was difficult because my left elbow was abcessed until January 2000. The doctors said they didnt know if it would ever heal. All I remember from the coma is dreaming, alot of dreams. The worst were the nightmares, because I was in a coma I couldnt wake up to come out of the dream.
I was only 22 when I tested + for hiv which kinda screwed my life up but with having hemophilia is was just one more log on the pile. Ive never been affected by the hiv and have been healthy until last year. When the CDC and FDA released the info that the blood products I use "may" be contaminated with hiv, they had already known for years, they just covered it up because the Blood manufacturers (Fractioners) would have lost billions of $$. During the early 80's HIV/AIDS was deemed the "gay" disease because it was widespread in the gay community. Many hemophiliacs were forced to cover up their HIV status for fear of misunderstanding and retribution by the general population. There were many incidents of hate crimes, including murder, beatings, abandonment, loss of employment. There was a family in Florida that had 3 hemophiliac kids ( 1 who happened to be Ricky Ray) with HIV, the neighborhood got together and burned their house down so they would have to move away. These are just some of the issues I had to deal with. The Blood product I use is called Factor 8 Its about 97 cents per unit, and i need 2k units per transfusion just to slow a bleed down, it takes several to kill the bleed completely. A hemophiliacs average health care cost is over $100,000 per year and that is considering moderate to severe hemophilia, my average health care cost is around 1 million dollars per year.
When the Govt finally admitted the truth it was too late. When it was finally out in the open that gave us 2 choices, dont use the meds and die from a bleed or use it and get hiv, such a bargain. 7% of the US population are hemophiliacs, in 1980 there were 20,000 hemophiliacs, now there are 4500 left out of the 20,000. Factoring in the 7% growth over 20 years we lost a whole generation, murdered for money. This is nothing less than mass murder. Our own Govt, the CDC and the FDA covered it up for years. Because of my situation I have a lot of time to sit and think, maybe too much. Usually about the years before the coma and it makes me sad to know in my mind that i would never be able to do certain things again. Sometimes I forget I cant do even simple things anymore, like standing, reaching things, Ive already landed on my ass once. I think about the part of my life i cheated myself out of as far as having a meaningful relationship, something i will never have another chance to do. Having hiv at 22 I ended up shut myself off from the world, from the possibility of ever having a meaningful relationship with a girl. Out of the estimated 10,000 in the hemophilia community infected only around 1,500 are still alive and I am one of those 1,500. In 1996 the death rate was 1 per day, now with better medications and treatment it has only slowed to one every three days. Eventually we will all be gone, before our time.
Kelly Welsh
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