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About michiganjan

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  1. I have POTS--hyperadgrenatic version. Has anyone here with POTS and chronic fatigue found help with Elavil? MY doctor just prescribed it for me for fatigue. He said it is now FDA approved for the treatment of chronic fatigue syndrome. Michigan Jan
  2. Lauren, I am sure you must have given this information before but I missed it. How wereyou diagnosed with the Lyme Disease? Michigan Jan
  3. I have POTS. I am 60 years old. I am also a patient of Dr. Grubb. He recently ordered a CT angiogram of heart heart for me. I had this done on a 128 slice CT machine. My calcium score is zero. The report written by the cardiologist who read the scans states that all the coronary arteries are normal. The scans were also read by a radiologist who looked at the chest views. He wrote my pictures are unremarkable and stated No significant atherosclerotic changes are seen within the visualized thoracic aorta. I suppose I could wonder why the radiologist used the word "significant?" Were there ch
  4. Dawn, Go to Sirtex.com to read about the Sir Spheres treatment Jeff had. Jeff did die of his cancer and it was his liver that killed him. However, he did not have just liver cancer alone. He had Sir Spheres twice, once to the right side and once to the left side of his liver. It did reduce the tumors and slow it down for a time, but the cancer elsewhere was out of control so kept spreading, and came back in the liver with a vengence. Anything you can do to get it out of the liver or slow it down is desirable. And waiting around too long is not a good idea, There are only certain places
  5. I have been absent from this list a long time. My husband, Jeff's fight with cancer became my full time job. As was posted in another message, he died on November 13 after a 16 month battle with cancer at the junction of his stomach and esophagus. I am posting a link to a slide show we made of his life that was part of his funeral service The final two slides and music "I Won't Back Down" by Johnny Cash are very representative of his attitude toward his fight with cancer. here is the link: http://www.jonesncompany.com Well, it didn't post like a link, but if you just type in jonesncompany.c
  6. IK am curious. Who diagnosed you with the EDS type IV? I saw a geneticist at the University of Michigan and I was tested for type IV EDS with a skin biopsy, which was negative. The diagnosis of the other types of EDS is clinical, but there is an actual test for type IV. Michigan Jan
  7. Jeff is doing very poorly right now. His condition has worsened considerably. I want to cry when I look at him--he is malnutritioned, has swollen belly, legs, feet, most likely from his liver failing. I do not think he will be with me much longer. I am going to drive him to his retiree luncheon group tomorrow so he can see his friends. I hope he is able to enjoy it. He is also supposed to start a new chemo regimen Friday. I can't really imagine it will do him any good but he still wants to try. Sometimes he can barely make it from the couch to the bed. He relies on pain meds every day and has
  8. Sue, I am thinking of you and your daughter. I am sorry that she has to go through this--it is frightening indeed. I am keeping you and her close to my heart.
  9. Thank you everyone who is thinking of us and praying for us. Jeff is still having chemo therapy. In fact he had chemo today and another blood transfusion. He now has the blood of 7 other people in him. He is not not actively bleeding now but I think the chemo also is causing the low hemoglobin. He is completely miserable at times and I am extremely sad and anxious watching the man I love feel so terrible and go through so much. There are days he can't eat and we were just in the emergency room again last Sunday because of a no eating, no drinking day to get him some fluids and check out a poss
  10. I am in Michigan, after all, my handle on this forum is MICHIGAN JAN! I live across the state from Kalamazoo--I am near Detroit and Ann Arbor. If you decide to visit the Ann Arbor or Detroit Area, do let me know!
  11. My compression hose came with a slipper-like thin, shiny, slippy thingy that you put over the toe of one foot and then pull the hose over the slipper-like thingy. To work the hose up the leg, do not try to bunch them up like you would panty hose. Rather put on a pair of rubber gloves, the kind you would wear for house work and rather than grip the hose, use the plams of the hands on the outside of the hose to simply work it up the leg a little at a time. When the hose is completely on the leg, then pull the shiny slipper-like thingy out the toe hole. The slipper-like thingy has a grab tab fo
  12. Hi Corina, If you do decide to move do you have the opportunity to build a new house, so you could then plan it anyway you like it. I love my house, which we built. It is a story and a half. Meaning the main floor on ground level has all the living space including a master bedroom with bath. The upstairs is only over 1/2 the house and all that is up there are two bedrooms and a bath. That way you would have room for your boys now, and later, when they are gone you would have guestroom quarters. Now that my husband is retired and we have no kids at home, I only go upstairs once or twice a month
  13. Today we got the results of Jeff's latest scans. They show that the cancer in his esophagus/stomach has grown and spread to several lymph nodes. The pressure from the cancer explains the back pain he has been having this last week. This is the first time since he was diagnosed over a year ago that he has had pain from the cancer. He just got a prescription for a narcotic pain killer to help him sleep. The radioactive spheres he had to his liver seem to have helped somewhat there, as some of the tumors are smaller and yet, one has grown. He has also been losing some weight from lack of appetite
  14. I believe I think a bit like Nina on this topic. That there must be various causes. However, I am confused with the EDS connection. While I definitely am hypermobile and most likely have the collegen defect, and while my blood does pool in my legs, I tried hanging out with the EDS people for awhile, and among the hypermobile types there, POTS does not seem to be prevalent. There seem to be many hypermobiles out there without any POTS. And I can't find anything about POTS among the EDS organizations. So sometimes, I think it must be a multi-determined thing., not strictly an EDS thing. Perhaps
  15. I went through the prep very well and I have hypoglycemia and mine can be reactive so no sugar for me. I prepared for my prep by cooking a beef roast and reserving the juices and also cooked a chicken and kept the broth. I put the broths in the fridge and later skimmed off the fat to leave just a clear broth. I also used apple juice. I learned that even though I am reactive hypoglycemia that I could drink a small amount of the apple juice and just sort of swig it lightly all evening long to keep my sugar up. For a meal I had the broths and apple juice. At one point in the prep I did go lo
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