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Everything posted by KarenL

  13. KarenL


  16. I found my lab report and my creatinine is 1.02 with a reference range of 0.6-1.10 My GFR is 57 and the ref range is >60 does this mean anything? Also they were looking for thyroid issues to explain the weight gain and extreme fatigue and that is 2.05 for the TSH 3 and T4 free is 1.0 both seem to be normal...so why am I so tired? I mean so tired I fall asleep anytime anywhere. Sometimes I pull over in my car to sleep or just put my head right down on my desk. karen
  17. Hi Janey, Thanks for the warm welcome back! :) I have been checked all up and down my limited GI tract. I have more info to fill in, I also have celiac disease and no colon at all. It was removed in 1995 due to ulcerative colitis. So I definitely have absorption issues. The celiac was undiagnosed until 2 years ago, when it was discovered I had osteoporosis at the age of 48. I do know about EPO, looking at my recent blood work I do not see creatinine was done. My RDW, is high meaning that my red blood cells are not all the same size which causes oxygen to not be distributed equally. I will read the article and keep on top of this. Thanks for the replies. ! Karen
  18. Hi all, I haven't written in ages, busy with nursing school and just lurking every so often. I had been getting iron infusions and my Hct and Hgb were almost, but not quite normal. My ferricet became normal so the doctor said he can't give me any more, but my red blood cells are still down. I'm so drowsy all the time, I fall asleep in class and at the computer. Now my hematocrit is 30 and my hemoglobin is 10. Is there some other way to feel better? My hemotologist says 'see your primary to find out why else you might be tired'. I think we all know where that would go...see my primary? Useless! Any ideas? Thanks Karen
  19. Sounds like Flolan. Not a new drug, but new to you. I have used it for for Raynauds and it doesn't work so well for that, but continuous for PAH it's supposed to be great. You will feel hot and flushed at first, the nurse will sit with you for at least a half hour to make sure you're okay. The port is a little uncomfortable at first but you get used to it. Give the whole process some time, because it's a little weird at first, you will get used to it. Karen
  20. The mouth is part of the GI system which is affected by sclero. You can have ulcers anywhere along the alimentary tract, from mouth to anus, so yes, canker sores can be related. A good way to avoid them is to avoid sugar and faithfully take lysine 1000 mg every day.
  21. Unfortunately the emergency room won't know a thing. I had this and did lose part of a finger with gangrene. I've tried all the above mentioned remedies, and the only one that works is Revatio, a Viagara type drug taken 3 times a day 20 mg each time. It is so good, that I stupidly stopped taking it in the summer thinking to save some pills. (without insurance, a one month supply is over 3000 dollars!) thank goodness I have ins....anyway, when I stopped taking it my finger started having the blues and the fingernail started separating from the finger, all my symptoms of impending gangrene....I started taking it (Revatio) again post haste and the destruction turned right around. The nail stopped threatining to fall off and my finger only turns blue when I am super cold, like in restaurant AC. Revatio is getting easier to get approved, but it sometimes takes awhile. I'd research a get to your doctor tomorrow and beg for it. Otherwise you will get gangrene. It is not easy, it takes almost a year to lose a finger tip and you will be on multi --heavy duty opioids to alleviate the horrific pain. Get going NOW!!
  22. Hi all, I've been anemic for years and finally began iron infusions with a chest port last year after a transfusion. Also B12 shots weekly and then went to monthly. Also I take B12 orally every day. When the doctor stopped my infusions because my ferritin values were high, my hemoglobin goes down along with my hematocrit. I get sooooo tired it's like being drugged. What's next I wonder? How to keep the iron up and the ferritin normal? anyone else have this issue? Karen
  23. Hi Summer I had the body soreness to and was diagnosed with Fibromyalgia. I am currently on Cymbalta for it and it's helping. Good luck, it's a tough one! Karen
  24. I use Revatio now, it's similar to viagara and it's working. I still get Raynaud's attacks but they are shorter duration and not quite as bad. No horrible infections this winter, just one little one that I dealt with using bandaids and neosporin and one finger that keeps threatening to ulcerate, but hasn't. So maybe the Revatio might help?
  25. Hi Judy, I feel your pain. Been through exactly what you going through. It turned out that the doctor would not even consider an amputation because of the lack of blood flow to the area, he said it "would never heal". Here's what they did, maybe it can help you. First they did bi-lateral thoracic sympathectomies, one at a time. To make a long story short, they go into the nerves along your spine that are responsible for vasoconstriction in the fingers and sever the nerves. It is supposed to stop the constriction of vessels. It worked on one hand but not the other. The side effect is I don't sweat from the waist up on one side, apparantly they also use this operation for excessive sweating, and so on the side it worked on, I don't sweat. The finger that was "going bad" did indeed cause hand pain so severe I was screaming in the ER. They put me on increasing doses of a strong pain medication until I became tolerant, then went to stronger meds until finally I was on a patch for almost a year while my finger amputated itself with gangrene. Just the tip. Now I have this tiny sort of hooked finger left. But the memory of that pain is still there! I'm so sorry for you! Ask your doctor about the sympathectomy, it's worth a try and may stop the necrosis from spreading. I wanted an amputation too, Just take it away! was how I felt, I didn't want a year long ordeal while my little black finger slowly died but they explained how it would never heal if they cut it off. Now, I'm glad they didn't. Unless I point it out, not too many people even notice. I wish you lots of love and luck in whatever you and your doctors decide. I too only have one artery in each wrist and have to baby my hands constantly. Love and hugs, Karen
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