遗传性出血性毛细血管扩张症 & 年轻的过程
Note: The Utah 遗传性出血性毛细血管扩张症 Center is pleased to give our patients with 遗传性出血性毛细血管扩张症 a chance to share their experience with others living with 遗传性出血性毛细血管扩张症, and Ron is very eager to do this. We would like to point out that the Young’s procedure is not indicated for 遗传性出血性毛细血管扩张症 patients with mild to moderate nosebleeds or even those with severe nosebleeds unless other less invasive treatment options have been tried and have not worked. But given current treatment options for nosebleeds in 遗传性出血性毛细血管扩张症 patients, we feel that the Young’s procedure is an option for select 遗传性出血性毛细血管扩张症 patients. The following is Ron’s story in his own words.
9月1日, 2005, I went in for surgery at the University of Utah Hospital and had nose closure surgery (the Young's procedure). Surgery was performed by Leland P. 约翰逊, MD, the ENT physician for the University of Utah 遗传性出血性毛细血管扩张症 Center. It now has been over three years since I received this surgery and it has changed my life for the better.
You could ask my sweetheart Merna how she feels about it. In fact she would probably be the one to talk to about it. She used to see me hemorrhage in the bathroom and it looked like a slaughter house in there. I have no more nose bleeds, which was as much a social problem as it was a physical problem. I am a new man and it is an absolute miracle.
Hemoglobin Levels & 贫血
My hemoglobin is up to 15.9 at my last blood test and my hematocrit up to 49.2. For many years I had trouble keeping my hematocrit above 20. In fact doctors would say if we can just keep your hematocrit up above 20, we will be accomplishing something. I had been so anemic for many years prior to this surgery and I had one local doctor tell me "I don't know how you can even walk across the street.”
I first found out about this Young's Procedure by reading the 遗传性出血性毛细血管扩张症基金会 Newsletter, 直接连接, the spring issue of 2004, 8页, where it had an overview of a selection of methods for the treatment of recurrent nosebleeds in 遗传性出血性毛细血管扩张症 patients. One of these selections was the Closure of the Nose (Young's Procedure), which under advantages said, most reports tell of a “good effect”, and the disadvantages said “very invasive”. Side effects include that after the surgery one can only breathe through the mouth.
I looked into it and asked Dr. Leland 约翰逊 about it, and he said a Dr. 瓦莱丽·J. Lund was doing this procedure in London, England. I contacted her via a letter and even had surgery scheduled with her in London in the spring of 2005. In the meantime Dr. 约翰逊 also had been in touch with her and in fact performed this same surgery on a man at the University of Utah Medical Center.
I then scheduled surgery with Dr. 约翰逊 and on 1 September, 2005, he performed it on me as was noted earlier in this article. (As his second patient to have this procedure done.) I am now 73 years old and work on projects again that I could not do before. Thanks to this special day in my life where a change came about and I can enjoy my family and friends and not have the threat of nosebleeds to spoil things.
生活品质
I do not have problems breathing through my mouth only. I can't smell anymore, 正如我所料, but I can still taste, probably not as good as I used to but do pretty good tasting food. All I can say is that I now have a quality life, which I did not have before, having this surgery done, and to me it was worth it.
I am sure I would not have been around much longer the way I was going down hill prior to the surgery. My mother died at the age of 71 because of 遗传性出血性毛细血管扩张症, and her father died at the age of 80 as of a result of 遗传性出血性毛细血管扩张症.
联系我
I was a board member of the 遗传性出血性毛细血管扩张症基金会 International, Inc. from 1990 thru 1997. If you would like to contact me about this surgical procedure and my experience, you can get in touch with me by mail at 149 West 200 North, P.O. box 998, Monticello, Utah 84535-0998. Or call me at 435-587-2925. 或者发邮件给我： ronmerna@hotmail.com.
I would be glad to talk to anyone about how things can be done to help patients with 遗传性出血性毛细血管扩张症.
Sincerely a Friend,
罗纳德·L. 约翰逊
