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Mar 26, 2017 Latest post:
Jul 1, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Some of you know how I got here, but for those that don't, I will try to tell you about the 9 year journey that got me to this point.
In 2008, I had some severe bleeding issues which were finally diagnosed as ITP, which is a bleeding disorder caused by not making platelets, which are needed for blood clotting. In a 2 month period, I was in the hospital for 5 weeks as they tried to cure the ITP. All of the standard methods were used - drugs, transfusions, removed my spleen and a new experimental drug. Meanwhile I was still bleeding, as fast as they could transfuse blood back into me. I spent 10 days confined to bed in ICU because they were afraid I would fall and bleed out before they could save me.
One of the areas that was bleeding was from a internal wound from endometriosis. I had previously had a hysterectomy and had the endometriosis cleaned out, but it came back. So they decided to do 4 radiation treatments to try to burn the endometriosis out. It worked to stop the bleeding and finally the experimental drug worked to cure the ITP and I stated making platelets again.
In 2009 I was able to go back to work and I am thinking I am healthy and cured. My doctor called and suggested that we do more radiation treatments to be sure that all of the endometriosis has been eradicated. So I went for 40 more radiation treatments - every Monday thru Friday for 8 weeks. When I had the first 4 treatments, no one really talked about side effects or after effects of radiation. At that point, I just wanted to stay alive. When I went for the next 40 treatments, no one said anything about the effects, I guess because they thought I knew from the first go around. Igot sick during the treatments. I was exhausted, I could not get out of bed, sleeping 16 hours a day, even having to skip treatments, which made 8 weeks longer. I finally got through all my treatments. I thought life was normal again, other than dealing with Henry's cancer, which is a whole other story.
Early in 2010, I started bleeding again, from a different area. It was not the ITP, but radiation damage to my colon. I was in and out of the hospital every 10 -14 days for blood transfusions to replace what I was bleeding out. Again we tried different things to stop the bleeding, but eventually had to have the colon removed. By then, Henry had passed away and I was trying to learn how to live without him and without working as I was disabled from my health issues. I volunteered at Locust Grove, a local historical house museum and found several stitching, rug hooking and quilting groups to join . Things were looking up again.
Then came October 2012 and everything changed. On Monday at my annual dermatology checkup, the annoying rash over my tailbone became an open wound and I was sent directly to a surgeon. On Tuesday I had surgery on the wound. That same day I had a second surgery to place a tunnel catheter so that I could start dialysis. On Wednesday, October 31st I had my first dialysis treatment.
What had happened to get me to that crazy week in October - Radiation Damage. Radiation had basically fried everything in my abdomen. What had been thought to be a rash over my tailbone was really a radiation burn that became a wound when it was not treated correctly. And all of the blood transfusions because of the damage to the colon had been too much of a strain on my one working transplanted kidney so as to cause it to stop working.
That started the work to cure the wound. I had three different doctors and we did monthly debridement surgeries, wore a wound vacuum for about year, 60 hyperbaric oxygen chamber treatments; weekly doctor visits and every other day dressing changes. And yes I had to learn to clean and change the dressing on my butt without being able to see what I was doing. Everything made it smaller, but it would not close. Finally Dr. Sharpe decided that the wound would not close on its own. The only other possible way was to do a flap surgery. He would cut the wound out and then pull skin from my butt over the hole and sew it up. The catch to the success of the surgery is not putting any pressure on the butt for 42 days. No sitting, no standing, no walking, that is why I am confined to a bed for the next 6 weeks.
Why did I have to have the wound closed you ask. I could live with an open wound and just manage it with dressing changes, debridement surgeries and doctor visits. An open wound prevents me from getting another kidney transplant and I want a new kidney. I am a candidate for another transplant except for the wound. Dialysis is very restrictive to your life. It is a 5 hour commitment, 3 days a week. It is restrictive on your diet and activities because of lack of energy. It makes travel difficult because you always have to find a place and time to do dialysis when you are away.
The only solution to closing the wound now was flap surgery. It had been discussed before but it took 6 to 8 weeks recovery in the hospital. I was not ready to do It before. But now I had exhausted all my other options. The surgery first cuts out the wound. Then a flap of butt skin is pulled over the place where the wound had been and sewed down. The importance is not to stress the flap of skin while it is healing. It takes 42 days of not putting any pressure or stress on the new incision.
I had to get my head around removing myself from my normal life for 6 weeks to have this surgery. I had to say goodbye to my wonderful kitties for 6 weeks. I had to accept the fact of being in a hospital and a bed for 6 weeks. It was not easy and it took a while for me to accept this was my last choice of healing the wound.
I have a goal that I need to keep in mind as the apple in front of the horse - a new kidney and a life free of dialysis. I will get through this with the help of family and friends, just as I have gotten over the hurdles these past years.