Contact

Amber Petrogeorge

Amber Petrogeorge
Administrative Coordinator
HHT Center
Toll Free: (866) 292-4HHT
Local: (801) 581-8188
Fax: (801) 581-2414
Amber.Petrogeorge@hsc.utah.edu

Additional Resources

HHT Center of Excellence

Ron's Story

Note: The Utah HHT Center is pleased to give our patients with HHT a chance to share their experience with others living with HHT, and Ron is very eager to do this. We would like to point out that the Young’s procedure is not indicated for HHT 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 HHT patients, we feel that the Young’s procedure is an option for select HHT patients. The following is Ron’s story in his own words.

On September 1st 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. Johnson, MD., the ENT physician for the University of Utah HHT 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.

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 HHT Foundation Newsletter, Direct Connection, the spring issue of 2004, page 8, where it had an overview of a selection of methods for the treatment of recurrent nosebleeds in HHT 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 Johnson about it, and he said a Dr. Valerie 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. Johnson 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. Johnson 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.

I do not have problems breathing through my mouth only. I can't smell anymore, which I expected, 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 HHT and her Father died at the age of 80 as of a result of HHT.

I was a board member of the HHT Foundation 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. OR e-mail me at ronmerna@hotmail.com. I would be glad to talk to anyone about how things can be done to help patients with HHT.

Sincerely a Friend,
Ronald L. Johnson