Monroe, WI; email@example.com
1958 / Class of '03 / Bone involvement, SCT, kidney transplant / Remission / Updated: 3/09
I was diagnosed with MM in Oct. 2003. I am an RN and was fracturing my ribs at work. All I had to do was make a bed or walk down a hallway and a rib would break. I kept doctoring and doctoring, and was told this was just a fluke. I broke 8 ribs. Finally I went to the ER one morning due to SOB. They ran some tests and found my creatinine was 19 and BUN was 100. I was in total kidney failure, but for unknown reasons. I went to a larger hospital in Madison, WI and was diagnosed that day with MM.
Treatment was started immediately. First Dex, which make me shake all the time and I never slept. Then I got a GI bleed from that, so I was switched to Thalomid. Then I got a blood clot from my ankle to my hip. Was hospitalized for 6 days on heparin and on Coumadin for 6 months. Velcade was the drug used next, and it put me in remission.
Right after that, my Dr. suggested a stem cell transplant (the worst thing I have ever experienced in my life). There were 2 days I thought I was gonna die, and wished I would have. But after 3 weeks in the hospital sleeping in their horrible beds (and they have the worst pillows in the world) I went home. I looked really pretty at this time. I was down to 112 lb, bald, very weak, unable to walk alone, and walked humped over. I looked at myself in the mirror and said "who is that person, and what the hell has happened to me"? I could not stay alone, so I lived with my parents for 4 weeks. I do have my own home, and I live alone, but no way could I stay alone. I was so weak, I could not get off the toilet alone, I needed someone to pull me up and I could not get off the couch alone, I also needed help.
After I got home, taking a shower was a chore. After a shower, I was done for the day. I slept the rest of the day. I was totally exhausted. This lasted 3 months. Then one day I woke up and said, I can walk alone again and I feel like I have some energy. I was on my way to recovery.
In Jan.2007, I got a kidney transplant. I had to be in remission for 1 yr. and then submit my name to the list. It was the best surgery I'd ever had. I had been on dialysis for 3 yrs, and 4 months. Another horrible ordeal. I vomited for the first 2 years after every treatment. Glad that's behind me.
It is now April 2008, my kidney is doing great, and I finally went back to work part time. I am now a dialysis RN. I have chronic backaches and I tire very easily, but it is still a small price to pay, just to be alive.
When I first went to the Dr. in Madison (after I was in remission), I was told 74% of my bone marrow was malignant and they didn't think I'd make it. I had light chain mono protein in my urine. But I responded to treatment with several bumps in the road, and am here to tell about it today. I do realize it could come back at any time, but I'll deal with that, when it happens. I even have hair again.
If anyone has any questions, e-mail me. I will keep my story updated as time goes on.
March 28, 2009: Haven't been here for awhile, thought I should update my story. As of today March 28, 2009, I am still in remission and feeling fine. Had some kidney problems with my transplanted kidney, but they seem to be all resolved now too. So far all my labs, and 24 hour urines have been OK. I do have to get epogen shots once a week if my hematocrit is 35 or less. Your kidneys make new red blood cells, and it's the last thing that your kidneys do, so mine might take a little longer than the average person because my bone marrow is a little different. Other than that, I feel good, get tired easily, but working full time as a dialysis RN. Tired is just a part of my life now. Have learned to deal with it. At least I'm still here to tell about it. I do pray daily!
GOD DOES ANSWER PRAYERS!!!!
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