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Everything posted by miocean

  1. I certainly hope I don't have to take back my good news and that all your congratulations were in vain. I went to the kidney doctor this afternoon and while I was waiting for him I took a good look at the report from the test. I hadn't looked at the date and when I did it was the one from 2005! After playing phone tag with my scleroderma specialist's office I finally got a nurse and they are going to mail me a copy of the one from this week. I should still be okay as far as no 02 because my level only dropped to 93% after the test but you never know. I didn't call the oxygen company to take it out yet because I wanted to run it by my pulmonologist and see if he agreed. Good thing. You really have to check up on the doctors and get copies of the reports.
  2. I had my fourth six minute walk test today at the hospital where my scleroderma specialist is located. I did research on it before I went and found out that the one I had last year, at a local hospital, when they determined I needed O2, was done wrong. There are very specific directions on how it should be done. The same man did the test as my very first one. I had a forehead oximeter and was connected to 02 in case my level dropped too much. When I was finished he said I did very well. I asked if they had to use the O2 and he said no. He faxed the results to my scleroderma specialist who I saw a little while later. She said the results were so good that I don't need O2 anymore (!) so I am calling the company and having them pick it up. The other good news is that my skin score went from a 16 to an 11. I started out at 45 five and a half years ago so there is quite a difference. Between all of this and a working kidney I feel like a new woman! miocean
  3. Barbara, It is so good to have you post again! I, too, have missed your blogs. Your life is so different from mine, it was so interesting to hear about it. You have been an inspiration to me with all you do. Looking forward to hearing more. miocean
  4. Kiwimum, I am glad you are feeling more comfortable with the procedure. One thing I forgot to mention was to ask what will be done if they find a blockage. Will they put a stent in? There are two kinds of stents, one is coated with a medicine and the other is not. Do an internet search on "stents" and read a little about it. Since I was getting close to a kidney transplant I could not have a coated stent because you can't have surgery for a certain time afterward with one. Jeannie, I, too, was diagnosed with mild PH. Did your dr. put you on any meds for it? I am getting mixed messages from my doctors. miocean
  5. Hi Kiwimum, I've had two heart catheterizations. The first was a left heart catheterization. I was so scared! And there was really nothing to it. Last year I had a right and left heart catheterization and again it was nothing to worry about. Needles and I don't go together so I was really afraid of the IV but the nurses were good at getting my vein. You are awake during the procedure, under light sedation, and the only thing I felt was the sting of the needle for the local. The first time they did it he closed me up with a collagen plug, I had to lay flat for a while and then they took me to dialysis so the worst part about it was it was a very long day. The second time I had it done he closed me with a piece of metal called a star clasp. My procedure was late in the day so I had to stay in the hospital overnight and get dialysis the next morning. I think you have to drink a lot of water after to get the dye out of your system, but since I couldn't have fluids I had to have dialysis. Find out how they are going to close you and how long you will have to lay flat after the procedure. Don't worry, it is not worth the panic. I had a small bandage on and didn't even get a black and blue spot. Good luck and I hope your test comes out clear. miocean
  6. I saw my dermatologist today. My sclero said I had tumoral calcinosis and she said I had calcinosis cutis but she said there really is no difference. The one spot on my buttocks that is especially painful is not ulcerated nor infected. I asked her if she knew anything about carbon dioxide laser therapy and she told me it is old technology and doesn't really work. She uses a laser cosmetically but didn't say anything about it so I guess that wouldn't work. She said I would have to have it dug out and when I am able to have surgery I should have it done. I was thinking they would have to remove all of the calcinosis, which is quite extensive, but maybe they could just do that one spot. Wish I had a better solution. miocean
  7. I had problems with my mouth in November.I couldn't eat anything except soft things and soup. I went to my general practitioner thinking it was a sore throat. He gave me some medicine, I don't remember what. It didn't get better so I went back. He did cultures that came back negative. I went to my dentist but she said everything looked fine. They both suggested I see an ENT. My dentist recommended one so I called and it took me days to get through. An appointment was scheduled a week before I was going to FL. I thought about it, decided I didn't like how long it took me to get hold of his office and cancelled the appointment. It eventually got better on its own. At the time there were others on the forum who had the same problem. Do a search for mouth sores and you will find the posts. I hope yours goes away. miocean
  8. I am so sorry you are missing out on your cruise. I know with the anti-rejection drugs I am on that I am not supposed to clean litter boxes or bird cages but they never mentioned fish tanks. I learned to take out travel insurance several years ago. I was flying to Texas to see my sister and my cousin was going too, and the day before I felt so lousy I called my sister and said I wasn't sure if I could make it. I made my reservation late so the flight was over $700 and I had no insurance. I decided to go but just wasn't myself, slept a lot, did not want to go many places and found out when I got home that I had an infection. The next year we were flying to FL and I took out insurance which was a good thing because my catheter became infected and I had to give myself at home infusions. Everything was covered. I get it every time now. I hope you start feeling better and can schedule the trip for another time. miocean
  9. I have had interstitial lung disease for over 5 years.I have been on oxygen 24/7, off oxygen, and on oxygen during exertion. I am currently not using it but have had periods over the past several months when I have needed it. I had a PFT on Thursday. My pulse ox was 98% when I got to the doctor's office. The test showed that most things had no change except my diffusion rate went from 54% to 37%. Didn't sound to good to me so I asked the doctor if there was anything to be concerned about. He said he wasn't concerned because everything else was good and it could have been a error on the test. I do have trouble breathing but am doing much better lately. I have a six minute walk test on June 8th and an appointment with my scleroderma specialist also so I will get more info then. Any suggestions or advice? Thanks, miocean
  10. Hi Caroline, I saw your post on my two month anniversary of my kidney transplant. I am so sorry you are suffering renal failure. I was on hemodialysis for five and a half years. I waited a year before I was put on a transplant list because I was CERTAIN my kidneys were going to come back which they can with scleroderma. I had quite a few family and friends offer to be living donors but none of them worked out. I believe there is another person on the board with kidney failure who also does peritoneal dialysis, I hope she sees this and chimes in. In January I was diagnosed with PH. I have interstitial lung disease, GERD, calcinosis, Raynaud's, and GI problems. The wonders of scleroderma, I'm glad you found this forum, real people who actually know what it is like to have the disease. If I can figure out how to do a private message I will try to contact you. miocean
  11. I, too, joined the hiatial hernia club 5 years ago when I was diagnosed with scleroderma. I was in the hospital and they ran so many tests on me I really don't know how they found it, probably through an endoscopy. I haven't had trouble with it but have been on previcid and am now on omeprozol. I sometimes am anemic but they usually test for blood in my stool, never thought about the hernia as the source. I will keep that in mind for the future. miocean
  12. Dianehd, Yes, it is a daunting diagnosis. Do you know what kind of scleroderma you have? I have diffuse, so I have organ and skin involvement. I was diagnosed almost six years ago. Don't believe everything you read on the internet. It can be very scary. This is the best place for answers to your questions. Although none of us are medical experts everyone has actually experienced the disease and can help you. Post often and let us know how things are going. You may want to see a psychiatrist for help with your depression. There is no reason to suffer with it when there are medicines that can help. miocean
  13. I was wondering what the difference is between these conditions. I have been diagnosed with ILD and PH. Are ILD and PF different things or are they the same? What about PH and PAH? I see my pulmonologist next week but I was hoping I could have some answers before I go. Thanks. miocean
  14. Judy, I am so glad you heart catherization came back showing no PAH. I had one done in January and it came back mild PH. The cardiologist said it was so mild he wouldn't treat it at this time, my sclero specialist says it has to be treated right away, and my nephrologist doesn't want to add any new medications at this time so no one is on the same page. My husband was so helpful after the kidney transplant that I am glad you are feeling better so you can help yours. Hope all goes well. miocean
  15. Buttons, You sure are going through a lot of tests but at least they are getting to the bottom of things. Seems like with scleroderma there are always new things cropping up and more medication to take. Good luck on the rest of your tests. miocean
  16. Thank you everyone for all your kind words. I got good news again today. I went to my psychiatrist and when I told him how much better I felt he took me off Lexapro. I am still on Wellbutrin, but he added Lexapro a couple of years ago when I told him I was very depressed. One less pill is fine with me. Shelley, Thanks for sharing Gene's transplant story with all of us. When he had his transplant I knew I was getting close and I was scared. Hearing about his experience helped me with mine. I guess I'll be standing in line for the Ladies Room! miocean
  17. It's my kidney's two month anniversary today! I am happy to say it is doing well and so am I. My doctor is pleased with my progress. I have experienced mild side effects from the medications, diarrhea and tremors, but those I can deal with. I still have to go for labs twice a week because my Prograf (anti-rejection med) levels keep fluctuating. My prednisone is down from 60 mg to 12.5 mg and gets lowered weekly until I am down to 5 mg. My bladder has it's days and nights mixed up, I get up every hour at night and head to the bathroom. Do you go at night too? How many times? Restrictions have been lifted, I am no longer in isolation and am looking forward to seeing my friends. I have to avoid crowds and cannot eat food that has been sitting out or fast food. I am able to do a little bit every day and have been working on my closet and drawers. It is a good feeling to finally get some things done. Over the years I thought the scleroderma was what was making me so tired and depressed. Now I know that was part of it but it was dialysis that was zapping the energy out of me. I don't miss it at all, especially the fluid restriction. I don't know how I ever did it! The sclero is still there, of course, and the secondary conditions that go along with it are the worse things I am dealing with. My breathing is better and I am not using oxygen but my blood pressure is high and its probably from the pulmonary hypertension. My sclero specialist wanted me to start Letairis but the transplant came along and I couldn't. I have read that it causes liver damage. If you have PH what do you take? I go for a pulmonary function test next week and a six minute walk test in June so I will know more then. The calcinosis on my buttocks has been the worse thing I am dealing with and is very painful. I made an appointment with my dermatologist to see what she has to say. Thanks for being with me on this journey. miocean
  18. Alice, I, too, would be interested in ANYTHING that helped calcinosis, especially non-invasive treatment. From what I have read, nothing is really effective and they keep on coming back. I have them badly on my buttocks. They are becoming very painful. I have to sit on pillows on hard surfaces. I am worried about them becoming ulcerated and infected. My sclero specialist pretty much dismisses them and says I could have surgery to remove them. I am going to make an appointment with my dermatologist to see what she has to say, however she has never been too helpful with the scleroderma. miocean
  19. Margaret, Please pass birthday wishes from me to Gareth! It's a day for both of you to celebrate! miocean
  20. The first symptom of scleroderma was pins and needles. I would wake up in the middle of the night with them, and pain, and would have to get up and move my arms around to get them to go away. I thought I had carpal tunnel syndrome. My hands then swelled and became sensitive, my feet and legs swelled and I felt awful. It took a couple of months to get a diagnosis and I had a very fast progression of the disease. miocean
  21. miocean


    I remember reading about someone who had calcinosis on her knee. She said when the doctor removed it it was so big it stood up on the table by itself! Search the forums on it, there are many posts. I have calcinosis on my buttocks. For years it didn't bother me, I could just feel the lumps and bumps. About six months ago they became painful so I showed them to my sclero specialist and she said Oh yes that's from sclero. You can go to a general surgeon and have them removed. I did research on the surgery and some says it works and other say it doesn't. Then I couldn't have surgery even it I wanted to because I was close to a kidney transplant and it would affect my antibodies. I had the transplant and now I can't have surgery for a while, even If I wanted. I sit on pillows and put up with it. It hurts. miocean
  22. Amanda, You have such a good attitude, I admire you greatly. I hope everything turns out for the best one way or another. You're right about sclero, there's never a dull moment! miocean
  23. I started taking Reglan when I was first diagnosed with scleroderma. I was a little shaky from the start but after 5 years it was much worse. I went to my neurologist who diagnosed it as postural tremors. I decided to go off it in October. It seemed I wasn't as shaky. Now I am on new medicine that caused tremors so I am back to shaking. I guess I'll just have to deal with it. My scleroderma specialist suggested I start domperidone but after reading about it I decided it wasn't worth the risk. I don't have issues without it. miocean
  24. Thanks everyone. Things have become a little better. The diarrhea has mostly stopped and I am getting more sleep earlier in the morning. Naps or just laying down help too. It is confusing keeping up with all the changes in meds.My Prograf levels fluctuate, they dropped to 7 so my doctor raised my dose and they went up to 16. Normal is 11 or 12. He said I must be very sensitive to Prograf and is still trying to get the dose right. Then every week my Prednisone is lowered by 5 mg and will continue until I am down to 5 mg and I will stay there. And new things are added, and things are taken away. I am doing my best to keep up with it. As difficult as things are, I really can't complain. I have another two weeks in isolation then a month of avoiding crowds. I've been lucky with my blood work. I used to be a very hard stick when my skin was so hard but now that it has softened some I am much easier. So far only one person has had trouble getting me and they aren't using a butterfly any more. The twice weekly blood work was one of my biggest concerns because for years they took blood from my catheter. The doctor told me I can bend and lift now but to be careful. My breathing has improved and I am not using oxygen anymore. So things are improving. Thanks for all your concern. miocean
  25. Well, it took five weeks after the kidney transplant but it's finally hit me and the adrenaline rush is over. The kidney is doing fine, that is the best thing, but this week I have been exhausted. I haven't slept trough the night in 5 weeks as I wake up every hour to pee. I've had diarrhea for weeks, probably a side effect of the meds. My doctor tested my stool and it came back negative so he sent me to my gastro who ordered more tests. I had to fill up 4 jars this weekend! In the meantime my doctor told me I could take Imodium and that helps. My gastro gave me a prescription but my doctor isn't sure about it's interactions with the other meds so I am not taking it. My doctor told me I should be taking it easy so I started taking naps in the afternoon. Friday I slept almost all day. I feel a little better now that I've had some rest. The good new is my incision healed and I don't have to wear a bandage anymore. It is a job managing the pills and the weekly changes. I was put on Magnesium Oxide, anyone else taking it? One of the side effects is diarrhea! All in all, it is better than dialysis. My doctor thinks I am doing very well. So far I am accepting the kidney and that is the most important thing. miocean
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