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About adensmore

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    Senior Bronze Member

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  • Location
    Raleigh, NC
  1. I have GAVE and have bi-monthly endoscopies with argon plasma coagulation. I had the procedure at least a dozen times with no complications. It's quick and absolutely painless. They put me under with an amnesiac, pain medication, and a sedative, as well as an anti-emetic. I'm unusually hard to put to sleep since I take a prescription pain medication regularly, so I can't imagine that your doctor would have to use all 4 drugs like for me. The entire procedure lasts 45 minutes. I'm usually sleepy later that day, but otherwise, I've had no side effects. It has cut down the number of transfusions I've had to get considerably. I don't think you need to be worried at all. Best of luck, April
  2. How do I get in to see a sclero expert?

    Dr. Shanahan left Duke June 30, 2007. Dr. E. William St. Clair is now the head of the Rheumatology department at Duke. He has been my doctor since Dr. Shanahan left Duke and I have been very pleased with him. He is a great doctor and once you get to know him, he is a very caring man. I highly recommend him. April in Raleigh NC
  3. Chest Pain Update

    If it's esophageal spasms, then Nitroquik will stop them in minutes. It's the same medication used for people with heart palpations. It has done wonders for me. I don't go anywhere with out it. April
  4. Sjogren's

    I take Evoxac for my Sjogren's. It's a very expensive drug, but luckily my co-payment is only $40 a month. It works great for me. April
  5. PICC Line

    Karen, Has your doctor looked into why you are so anemic? I was severely anemic 2 years ago and my rheumatologist had me tested for Watermelon Stomach. Sure enough I was bleeding from my stomach. I had no pain, no symptoms (other than being tired). Now I go to the gastroentrologist every other month to have my stomach cauterized. I have a port a cath. They originally wanted to give me a PICC line but since I have no visible veins and they can't get an IV in me at all, they decided on a port. I really love it. It's just below my clavicle on the right side of my chest. I had to be put to sleep to get it, but it was no big deal. I would highly recommend a port because it doesn't require any care, other than getting it flushed once a month, and you can keep it in for years. I've had multiple blood transfusions in it, a RN can draw blood from it, and they use it to sedate me when I'm having a medical procedure. No more multiple trys to get an IV in or trying to get blood for labs. I don't know what I would do without it. April
  6. Cyclophosphamide

    Whatever you decide, make sure they give you Mesna with the cyclophosphamide to prevent hemorrhagic cystitis. I wasn't given Mesna and I've been through a terrible time since October with bleeding from my bladder, very large clots, 2 surgeries, 18 days in the hospital, bladder spasms, etc..... By the way, I took a very large dose of cyclophosphamide, 1720 ML for 12 months. My white blood cell count would not drop with the lower doses of cyclophosphamide so my doctor kept increasing it until I had the response he was looking for. In addition, my skin scores did not improve and my lung function did not improve. April
  7. Hyperbaric Oxygen Chamber

    I've had 19 treatments in a Hyperbaric Oxygen Chamber (HBO) for hemorrhagic Cystitis caused by cyclophosphamide toxicity at Duke. I'm supposed to have a total of 60 treatments. In general HBO is used for wounds that are difficult to heal, the bends, carbon monoxide poisoning, radiation tissue damage, stroke victims and brain injuries. They are using HBO on me as an adjuvant therapy to the two bladder cauterizations I've had to stop the bleeding and clotting. The doctors say it looks like a bomb went off in my bladder. I bled for 2 months and 2 weeks before my surgeries received 6 units of blood because the bleeding and clotting was so severe. While in the chamber they "dive" you to 2.5 ATA's which is approximately 48 feet below sea level and then infuse the chamber with 100% oxygen. You remain in the chamber for 2 hours. The 100% oxygen is carried to your organs and tissues to promote quicker healing. I've been told that it will not help scleroderma, except for scleroderma patients that have digital ulcers that won't heal. Just as a side note, my hemorrhagic cystitis could have been prevented if a drug called Mesna had been give to me while I was receiving the cyclophosphamide. If any of you are receiving cyclophosphamide please ask your doctor if you are receiving Mesna too. Mesna binds to the cyclophosphamide and prevents bladder damage. As far as I know, I'm the only scleroderma patient who received cyclophosphamide and then got hemorrhagic cystitis who is being treated by hyperbaric oxygen. I think Duke is going to write a paper about me. Woohoo, my 15 minutes of fame. Stay warm!! April
  8. Bladder Cystitis

    I could probably write a book on hemorrhagic cystitis caused by cyclophosphamide. I just got out of the hospital after being there for 10 days for this problem. I had 12 cyclophosphamide treatments for Scleroderma. I was given 2 large bags of saline to hydrate me before , during and after the treatments, and thought every precaution necessary was being taken to prevent damage to my bladder. I guess I'm just the unlucky one who this happens to occasionally. Almost 2 months after my last treatment, I started bleeding from my bladder regularly when urinating. Then I began passing large clots. I was seen by a leading Urologist at Duke and given Elmiron to treat the bleeding. However the bleeding went on for 7 more weeks. I finally found myself in the ER with a blockage from a large clot Thanksgiving weekend. My hemoglobin was down to 8.1 and I had to get 2 pints of blood. The bleeding and clots continued for several more days and then I had another blockage. This time my urologist admitted me to the hospital and inserted a 3 way catheter to flush my bladder. I had two Alum treatments while at the hospital, but the bleeding and clots still continued. To give me a break from the hospital, my doctor sent me home last Sunday. At this point I'm just waiting to see what my next treatment will be. I know that if I continue bleeding that the next treatment options are very serious. If I had to do it over again, I wouldn't have ever taken cyclophosphamide because not only did it not help my scleroderma at all, it caused damage to my bladder that may require major surgery to fix.
  9. Uncontrollable Itching

    Dave, I'm so sorry to hear that you're still itching. I'm sure you have tried every over the counter lotion or cream on the market. I've had a lot a success from one lotion and will be happy to give you the name if you send me a message. You may have already tried it, but if not, I hope it helps. I also have Dr. Shanahan's email address and phone number in Wilmington if you want to contact him. I'm sure he would be more than happy to help. Other than the terrible itching, how are you feeling? Are you feeling the benefits of the stem cell transplant? Warmly, April
  10. Update On Cardiologist Visit!

    I have a fast heartbeat too. The last time I went to the doctor is was 133. Let us know how the Atenolol works. If it helps, I ask my doctor about it. I worries me a lot that my heart rate is so high. April
  11. Gi Issues/treatment

    I completely understand what you're going through!! In addition to Watermelon Stomach, I have GI issues every day. If I'm not constipated, I have diarrhea. I went to a specialist at Duke and he determined that the muscle around my bottom has stopped working so I am incontinent too. I wear a pad daily and keep an extra pair of underwear with me in case I need them. It is so frustrating and embarrasing!! I'm constantly worried that I've had an accident. :( The only treatment the doctor recommended was biofeedback, but it's rather time consuming and I miss enough work with all the other doctor's appointments I have to go to. Warmly, April
  12. My Endoscopy Results

    Nelly, I have watermelon stomach and have to have an endoscopy every 2 months. The first couple of times I woke up during the procedure. NO FUN!! After that, they increased my Versed and Fentenyl, but I still could remember parts it. The last time I had an endoscopy (2 weeks ago) they gave me phenegren in addition to the Versed and Fentenyl, and they had a terrible time waking me up. I slept for 16 hours straight after I got home and I was really dopey the next day. I don't know which is worse, being awake or being overly sedated. I woke up during my colonoscopy too. It was extremely painful!! Best of luck, Warmly, April
  13. Establishing With... Yet A New Internist...hmph!

    Susie, I understand completely!! I had a teriffic relationship with Dr. Joseph Shanahan, at Duke and he left to go into private practice in another city in July. He gave me a sense of hope that no doctor has ever given me before, plus he managed my Scleroderma and all its many problems wonderfully. I wanted to follow him to his new practice, but he thought it would be to my benefit if I stayed at Duke since they have expert technicians to test my breathing and heart function, etc... I met my new doctor at Duke last week. He's the head of the department, so he's very knowledgable. I just don't have the history with him that I had with Dr. Shanahan. I'm guess I'll just have to have patience and let him catch up with me. I wish you the best of luck finding a new Internist that you have a great rapport with. Hugs, April
  14. Gi Issues/treatment

    I have GAVE or Watermelon Stomach. I have an endoscopy every 2 months and they cauterize the areas that are bleeding. I've had it done so many times that it's not a big deal. April
  15. Chest Pain

    I've had esophageal spasms for 2 years. They can be quiet painful. The first time it happened I thought I was having a heart attack. It was terrible!! My doctor prescribed Nitroquik tablets and they take the pain away in minutes. I couldn't do with out it!! April