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Everything posted by miocean

  1. I just returned from the hospital after the cardiac catherization. Everything went well with the the procedure. I have no blockages in my arteries so there was no need to worry about a stent. I do have minor pulmonary hypertension and the right side of my heart's pressure was 45% instead of 50% but the doctor said that was nothing to worry about. I had to stay overnight at the hospital because I had to lay flat on my back for five hours and then it was to late to go home. They took me to dialysis early this morning and then released me early in the afternoon. I had forgotten how bad hospital food is! I should be ok to have a kidney transplant from a cardiac standpoint. Thanks to all who replied. The mystery now is what is causing the shortness of breath. The next issue is for another post. miocean
  2. Sweet, It is good to have you back again and also encouraging to know that you can travel with scleroderma. I went to FL for a week in Dec. I had to make arrangements for dialysis there and brought oxygen with me on the plane just in case but I was still able to go. I am glad you had such a good trip. miocean
  3. KayKay. I have my doctors fax my tests to my sclero specialist but she never seems to get them so I have learned to get a copy of everything myself and bring the reports with me when I go to see her. She always gets a ton of papers from me which she looks over on the spot. Good luck with your upcoming tests. miocean
  4. JBG, I am glad you didn't experience pain with the insertion of the stent. It is reassuring. What is an ablation? miocean
  5. I am scheduled for surgery Thursday afternoon. Hopefully there won't be any blockages and I will be able to go home that night. If there is a blockage and they have to put a stent in I will have to stay over night.I am having the procedure due to an abnormal stress test and difficulty breathing. Although I have Interstitial Lung Disease my sclero specialist and pulmonologist say my lungs haven't changed in a year so they don't think it is my lungs. Last year I had an abnormal stress test and had a heart catherization and there were no blockages so hopefully this year will be a repeat. Do you have any experience with stents? My sister has one and she said it hurt like crazy to have it put in but that other people she knows had no problem. miocean
  6. I have read a lot of posts on calcinosis and have been surprised at some of the places it is formed on the body. I have also read that there is really nothing effective in treating it. I have had diffuse scleroderma for five years now and have developed a very large area of calcinosis on my lower buttocks. At first it was just small hard areas, then it became very lumpy and bumpy. It hasn't been a problem until recently and now it is starting to be bothersome. I was at a friend's yesterday and was sitting on a hard wooden chair. I adjusted my position several times to get comfortable and finally had to stand up. My computer chair has a thin cushion on it and I can feel the calcinosis through it. Has anyone else had calcinosis there? My scleroderma specialist told me I could have them removed and to go to a general surgeon. Does surgery work? It is in a very delicate area and covers quite an expanse so I can't imagine what it would be like to have them removed. The only other place I had calcinosis was on my upper neck. About a year into the disease my neck started to really bother me and nothing I did helped. I went to an orthopedist who X-rayed it and immediately sent me to a neck specialist. After tests he wasn't sure what is was and thought it might be a tumor so I had to have a biopsy. It ended up being calcinosis and whatever chunk he took out to biopsy solved the problem because it hasn't hurt since. I was really sick after the surgery, throwing up like crazy and had to stay in the hospital a couple of days but no problem since. Seems like a couple of years ago I read on the forum about a girl whose mother had calcinosis on her buttocks and was really painful and discharging. I don't remember what happened. Any thoughts? miocean
  7. Barefut, Are you doing any better now? Were you able to get in and see your doctor? I know how difficult it is to have scleroderma and I don't have two kids to run around after. And fortunately, I haven't really had any pain. Keep us posted as to what is going on and I hope you you are feeling better. miocean
  8. miocean


    Hi Kay Tee, It is well worth it to drive the distance and see a scleroderma specialist. I go 4 times a year so it is not that bad. I only have to go an hour and a half away and my husband takes me. We usually find a nice place to go out to lunch so it makes it a little bit fun. I am sorry you have scleroderma but you will find a lot of help here. Welcome. miocean
  9. I went to my scleroderma specialist last week and had good news! After five years my skin is almost back to normal. It was very hard all over so that has really been a change. I gave her many reports including a stress test that was done in Oct. that was abnormal. I have had trouble breathing and my CT scans, PFT's and chest X-rays haven't changed in a year so she suggested I see a cardiologist. I knew that was in my future. Made an appointment and saw him this week. After going over everything he said I need a cardiac catheterization. He said I can't get a kidney with an abnormal test. It will be scheduled in the next couple of days in a hospital near me that is known for it's heart department but is unfamiliar to me. In the meanwhile, today I received another call for a kidney. It was from a 60 year old with a 25 year history of high blood pressure and died from a stroke so I turned it down. Too many things going on right now. I had living donors in their 50's who were told they weren't candidates because of high blood pressure. Has your heart been affected by scleroderma? I am curious. miocean
  10. I have always had problems with my weight being overweight since I was a child. There were times in my adult life when I lost weight but only due to dieting and lots of exercise. My weight would constantly fluctuate and I tried every diet in the book. When I got scleroderma I spent a month in the hospital and lost 30 pounds. I started dialysis and the renal diet which includes a lot of protein, more than I can eat. Little by little I gained weight. After five years I was back to where I started. You can't cheat on dialysis. They weigh you when you get there and when you leave and every month they do blood work which tells them how you have been eating. I am always low on protein and am supposed to do a supplement which I am not good about doing. It seemed that my weight was always going up. My clothes from last year didn't fit me this year and I had to go out and buy new ones a size bigger. Well, since November I have been losing weight. I was having trouble with my mouth and couldn't eat very much then. I am better now but still don't have much appetite. I have lost 10 pounds. My nutritionist at dialysis sat down with me this week concerned that I was losing weight too fast. Usually people are talking to me about gaining weight, not losing. She is concerned that I am not eating properly. I would still like to lose some more weight, maybe about 10 pounds which would still put me at 150 pounds. No skinny minny by any means. What has been your experience with your weight with scleroderma? I know some of you have gained and some lost. I am curious. Looking forward to hearing about your experiences. miocean
  11. Thanks everyone for your well wishes. The surgery went well although I did wake up before it was over so I felt the last few stitches going in. Everyone was really nice and the warm blankets felt great! I had forgotten how sensitive a new catheter is and am really sore and tender right now. I don't remember my neck being as sore. The bandages go up higher then before and it makes it difficult to turn my head. But all of this will get better with time. Dialysis last night made it a long day. I had to be at the hospital at 6:15 a.m. and didn't get out of dialysis until 7:30 p,m, I went to bed right away and had no trouble sleeping. I can't wait to get used to this catheter, my last one was in so long I was used to it. miocean
  12. Hi Dazzzie, I am sorry you have scleroderma, it is not an easy disease to deal with because everyone experiences it differently. I have diffuse sceleroderma and my skin, lungs and kidneys are affected. Many of my early symptoms were like yours. My hands were swollen and I itched terribly. My skin was very hard. After five years I am no longer swollen and itchy and my skin is practically back to normal. Fatigue is a constant issue with the disease, for me the hardest to deal with. You have come to the right place in finding this forum. It has been a tremendous help to me. I am sure you will find answers here. miocean
  13. I have to have surgery tomorrow. No it is not for a kidney. My dialysis catherter broke last night and it has already been repaired once so it is time to replace it. It is same day surgery and I have had it done before so know what to expect. I just hate hospitals. I was hoping this catheter would make it through to the transplant but it is a couple of years old and they are only supposed to last six months or so so I really can't complain. I will be under sedation so it will take a couple of hours and then my husband will have to take me to dialysis as I won't be able to drive. miocean
  14. I am sorry so many of us have trouble breathing in the cold weather. I went to my sclero specialist yesterday and brought my oxygen but still had trouble breathing. After examining me and looking at my past two CT scans she asked if my 02 was effective. I had to say it honestly didn't help much. She said my PFT's and CT scans haven't changed in the past year so maybe it isn't my lungs. It might be my heart. So I have to see a cardiologist. I am firing my past one, I do not like him. He was supposed to do a right heart catherization and did a left one instead so I will probably have to have a right one done. I am going to make an appointment will my husband's doctor. I met him once and really like him. I have an appointment with my pulmonologist next week so we will see what that will bring. In the meantime I'll just be breathing heavy and coughing. I read the links you provided and wonder if it could be vascular.I hope we get some answers. Stay warm. miocean
  15. Buttons, I am glad your surgery is helping your problem. I hope things continue to get better. miocean
  16. I know many of us have trouble with the cold weather, mostly with Raynauds. Fortunately that is not that bad for me. I have had one spot of calcinosis on a knuckle for years. It has gotten better over time but I am developing another one on another finger. The worst thing about the cold weather is it makes it much harder for me to breathe. I was put on oxygen a year ago for when I exert myself but haven't found much of a need to use it. However, I went out in the cold today and brought my portable. I still had trouble. Does anyone else experience this? I had a CT scan in Dec. and compared to my one a year ago there is no change. I go to my scleroderma specialist tomorrow and she will probably be mad at me because I was supposed to have a six minute walk test but haven't done it yet. I have a lot of other questions for her. I will keep you informed.
  17. I am glad that you have found this forum. When I first became sick I typed my symptoms into search engines and became very frightened with what I read. After reading this forum I discovered that as serious as this disease is, many manage their symptoms and are able to lead happy lives. I hope you get a diagnosis soon because not knowing is the scariest thing. miocean
  18. As 2009 comes to a close I would like to thank all the members of the forum for all the help and support you have given me over the past five years. Although I don't post frequently I read the site daily and have learned much from all of you. In most instances you have been more helpful than my doctors. I am " celebrating" my fifth year with diffuse scleroderma. When I first learned I had this disease I thought I would be dead in five years. After reading your stories I realized that many of you had survived much more than that and was encouraged. I wish you all a happy, pain free year and hope you all will continue to post. I am making a New Year's resolution to post more often. Happy New Year! I keep on telling myself to try and enjoy these days because they might be the good times. miocean
  19. I chipped a front tooth a couple of months ago and had to have it bonded. I have no idea how I chipped it. My mouth is extremely dry but I am also on fluid restriction for kidney failure. I have heard about lip biopsies to diagnose Sjogrens. What is the definitive test? My eyes are really dry and I had to stop wearing contact lenses but every once in a while they tear. It is very frustrating.
  20. Thanks everyone for your kindness. It is so nice to know that someone else out there understands. I received another call at 6:00 a.m. about another kidney. It was from a 62 year old with high blood pressure. I turned it down. I've been waiting five years so I want a good one when it happens. I am a nervous wreck! After waiting so long I am really scared. I hate hospitals. I went to visit my cousin yesterday at one. She had surgery for colon cancer. It appears to be successful but she will be in rehab for quite a while. I had almost forgotten how depressing they are. I was told I am now fourth on the list. So it could be anytime soon. It will mean some big changes in my life. I am so used to going to dialysis and not urinating that it will really be different. I will also have to deal with losing disability and trying to get it based on scleroderma. We all know what that can mean. I hope I did the right thing turning down the kidney...
  21. Just wanted to update you. I've made arrangements for a portable oxygen concentrator for my trip and have a number of a company in case I need oxygen there. I wasn't able to get an appointment with an ENT until after I return. My mouth still bothers me so something isn't right. It is a little better and not pinching quite as much but is still sore. I am a wreck!! See my post on kidney transplant.
  22. Just wanted to let you know that I am feeling a little better. I am still having problems with my mouth and am waiting for a call from the dentist. It is doing a little better. I am still having trouble eating some foods, especially things that are crunchy But at least there is some improvement. Georgio oz, What is your secret to keeping a positive attitude? You seem to have a lot going on yet seem to be in such good spirits. I'll look forward to hearing it. miocean
  23. Kamlesh, I am so sorry you were so sick with H1N1 and hope you have a good recovery. I get a regular flu shot every year and this year got the H1N1 at dialysis. A couple of years ago my husband got the flu and it knocked him for a loop. He gets a vaccine every year now and wants the H1N1 but can't get it because of the shortages. I hope everyone stays healthy. miocean
  24. Well, it came close but I didn't get the transplant. The person before me was a match. At least I know I am getting close to the top of the list and the next time a blood type O comes up it might be for me. Things have a way of working out for the better so there must be another kidney that is better for me somewhere down to line. Thanks for your good thoughts.
  25. I received a call from a local hospital this morning that I am second in line for a kidney transplant. They have to make sure the first person qualifies and if not it will be me. It is an infant who died of a head trauma so I would be getting both kidneys if it happens. They are going to call me again in a couple of hours and let me know. I may be having surgery this afternoon. I will keep you posted.
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