I haven’t mentioned this before — and debated even putting this post up — but Xebeth, who I recently reconnected with and has become an extremely dear friend to both Prairie and I, has been battling malignant hyperthermia for some time now.
The disease is rare and still very much an unknown, so the above link leads to a Google search rather than one particular source of information. In brief, though, it is a hereditary muscular disease most often triggered by a reaction to anesthetics. Most often, once discovered, the disease can be managed with careful monitoring during any surgical procedures that might require anesthesia, and the patient’s life expectancy is normal.
However, more rarely, the disease starts attacking the muscles without the anesthetic trigger, essentially burning them up from the inside. In this case, eventually the disease will attack the heart. Life expectancy with this form of MH is far shorter. NOTE: I now believe that this is probably not true. See this post for details.
Xebeth was confirmed to have the rarer and more dangerous form of MH a few months ago. The initial prognosis was in the five to ten year range, but after a biopsy of some of the affected tissue was performed, she was given roughly ten months to live.
In an effort to extend her time left with her friends, family, husband and children, Xebeth agreed to undergo a treatment process that might keep her around for a few years longer, hopefully for the next decade or so. However, the treatments are not pleasant — similar to chemotherapy, they introduce a ‘poison’ that attacks and kills the affected tissue — and run the risk of triggering an attack.
Her friend R has been by her side throughout the treatment process, trading off shifts with Xebeth‘s husband Austin. R’s been doing a wonderful job of acting as an intermediary between Xebeth and Prairie and I, reading our e-mails to her and keeping us updated on Xebeth‘s status.
About half an hour ago, R sent me a note saying that Xebeth had had a bad attack and is in surgery.
I’ve been keeping quiet about this situation for some time now, but at this point…well, Prairie and I are worried and scared, and I have to go to work ’til ten in about twenty minutes, so likely won’t get any updates until late in the day. In the two visits to Seattle that Xebeth has been able to take since she and I got back in touch, she’s become very close to Prairie and I both — Prairie discovering a new friend, while I get to know the incredible woman that the first girl I ever dated has become. We both love her greatly, and would appreciate any thoughts or prayers you can contribute.
Update: We got confirmation that Xebeth had made it through surgery later in the day while I was at work, and this morning (Saturday the 22nd) got a phone call from Xebeth. She’s okay and out of immediate danger. Here’s hoping we can keep her around as long as possible.
Our thoughts will be with your friend and you.
Oh Woody, I will truly keep her in my thoughts and prayers. I went through virtually the same thing when my mother was (mis)diagnosed with myelofibrosis last year. It was right after my dad passed away, and for almost 6 months we were told by her doctors that she had 2-5 years to live. We never gave up hope though; it was one of the hardest things I have ever had to do – going to visit the hospitals in Seattle where she would have had to stay for a bone marrow transplant and where she could possibly die in the process. Wow. I don’t wish that on my worst enemy.
At what truly seemed like our darkest hour, all of the prayers (and, I, a relatively non-Christian Christian tend to not put too much stock in prayers) were actually answered, and I was a believer, as we were finally told she had been misdiagnosed.
Don’t give up hope, and I hope your friend knows how lucky she is to have friends like you who care about her and can be there for her right now.
Wow, Woody this is the first I have heard and it hurts to hear. Please share with Xebeth that I am thinking of her and have many times in the years since she walked over that hill and out of sight so long ago. She helped bring a new energy and life into me at a time when I needed it most and I have rarely met another soul with such vibrance in them. If there is anything I can do, although it be from afar, please let me know. She is very lucky to have to you. I will keep thoughts of all of you close to my heart.