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Everything posted by miocean

  1. Yearly tests for Systemic Sclerosis

    I have had to have many yearly tests, not so much because of diffuse scleroderma, but due to being on lists for a kidney transplant. I have PFTs every six months, CT of the chest yearly, echo yearly, I have been having yearly heart catherizations due to abnormal stress tests and my sclero specialist said she might request another one in the fall to check my PH. Due to the transplant I now have weekly blood work and get a lipid profile every three months. I had to be tested yearly for HIV due to the transplant. Jeannie, What is a BNP level? How is it related to PH? All these letters confuse me. miocean
  2. Yesterday was the third month anniversary of my transplant. The doctor said my kidney is doing very well. I am having trouble with my prograf levels. That is an anti-rejection drug that oddly enough also damages the kidney so it has to be carefully monitored. Thursday my level was 16 and he wants it around 8. My dose has been lowered and we'll see what the blood work on Monday says. Normally I would drop down to blood work once a week at this point but I might have to keep going two times until the prograf levels off. Unfortunately, when the prograf goes up, so does my creatinine so it was 1.3,not too bad but too high. I had a wonderful surprise last night. I thought I was going out to dinner with two couples and when we got to the restaurant and walked in I thought it was very crowded for as early as we were there. The sign said please wait to be seated so I was standing there when my friend said go on in. It ended up that all the people were friends of mine! My husband threw a surprise party for me. I was shocked and felt so stupid! It was a lot of fun and everyone had a good time. I know I've had some good news lately but all is not great in my scleroderma world. A week ago I woke up. stretched my legs and my ankles felt tight. I could barely walk when I got up but they loosened up during the day. It continued to be that way and then my legs got very hard and hurt. They weren't swollen though. I discussed it with the sclero specialist and she said it was scleroderma. I have had very tight skin but it never hurt. In spite of it my skin score went down. My nephrologist felt them and said it wasn't fluid retention so I am trying not to worry. At least they get better during the day. I am not as short of breath as I was but I find myself gulping air, almost like a goldfish in the water. When I lay down I am short of breath which I have read is a symptom of PH. The sclero dr. said we will have to revisit Letairis in the fall and that I might have to have another heart cath. She also asked about my Raynaud's and I said if I get cold my fingers turn blue but they turn back to pink when I warm up. She said I might need meds. for that. I take enough already. It seems the answer is always more drugs. The calcinosis on my buttocks has become even more painful. I have learned to move in a certain way so I don't hit the spot that is so bad. At home I sit on pillows but the hard chairs I encounter out are painful. I finally ordered an inflatable donut. I will feel stupid but maybe I won't be in pain. My dermatologist said when I get the ok she can remove it in her office and she is a great cosmetic surgeon. My nephrologist said in six months I can have surgery and 3 are now passed so I guess it will be Sept. before I get any relief. I tend to divide my life into two phases: before I got sick and after I got sick.. Before I got sick I was an active professional and artist, ran 3-5 miles a couple of times a week and swam a mile in the ocean every day in the summer. After I got sick I did nothing. Well, now that I am feeling better I am getting involved again. I am working with a group of women to start a local chapter of a national non-profit that grants wishes to both critically OR chronically ill children ages 3-18. I am Public Relations Coordinator! It is just getting off the ground but it is exciting to be productive again. If you would like more info about this group you can private message me. I have been inspired by so many of you who deal with this illness but are still engaged in life. While I was on dialysis I would read Amanda's posts about how there is life after scleroderma and I would think what life? I should have died when I stopped breathing and my heart stopped, it would have been better. The only thing that kept me going was the love of my husband and my love for him. Now I understand what she means. I feel so much better, I am much happier and am walking better. Don't ask me how a kidney does those things, I am just glad it happened. I am looking forward to living again and plan to do as much as I can while I can. You never know what will happen. Sorry this is so long. Thank you all for your inspiration and courage. I am very grateful for this forum. miocean
  3. I posted in my six minute walk test post that the scleroderma doctor gave me the wrong report for the test. It is partially the fault of the pulmonary department because they sent her the results from the test done in 2005 but she is the professional and should have checked. I also got a copy of her report from March from my kidney doctor and in it she wrote that I had a failed kidney transplant in 2007!!!! I had her correct that at this last visit. She also said I was on Enbrel which I never was because insurance turned it down. I was going through my test results from the kidney transplant department at the Mayo Clinic in Jacksonville, FL and they said I had a LIVER TRANSPLANT! I have found that some doctors are reluctant to give you reports but I think we must insist. I know there have been many cuts and doctors are short staffed but there really is no excuse. Have you had similar experiences? miocean
  4. Upcoming social security hearing

    Sam, Wishing you well at your hearing. I hope you are approved this time. I am also glad you didn't suffer too much damage from the tornado. It must have been so frightening. There seems to be so many more natural disasters these days. I live on the coast and always worry about hurricanes when the season comes around. So far we've been lucky. miocean
  5. Follow up with your doctors

    I never thought that the mistakes could affect insurance and cause legal issues. I'm glad I was able to get hem fixed. How can you get reports from reluctant doctors? miocean
  6. Six minute walk test

    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.
  7. Locked Out

    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
  8. Right Heart Catheterization experiences

    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
  9. Right Heart Catheterization experiences

    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
  10. carbon dioxide laser

    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
  11. Happy Anniversary

    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
  12. Sore gums and mouth

    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
  13. Farewell lovely Scandinavian Cruise

    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
  14. 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
  15. Greetings from a new member

    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
  16. Hiatal Hernias....

    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
  17. Welcome New Member Dianehd

    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
  18. 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
  19. I had a Balloon Mitral Valvuloplasty

    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
  20. Stroke clinic

    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
  21. Happy Anniversary

    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
  22. carbon dioxide laser

    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
  23. Greetings

    Margaret, Please pass birthday wishes from me to Gareth! It's a day for both of you to celebrate! miocean
  24. 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
  25. Calcinosis

    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