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Everything posted by miocean

  1. Pawndy, I am sorry you are experiencing pain. That is very difficult to deal with. I,too, am on oxygen at times when I exert myself. I don't like to use it because it makes it obvious that I am sick. Otherwise I look fine. So I avoid exerting myself which keeps me from doing things too. Keep on posting, ask questions. This forum has been so helpful to me. Many others just don't understand.
  2. Jeannie, I was taking your advice and was going to make an appointment with my general practitioner but when I opened my appointment book I saw that I have an appointment with my scleroderma specialist on Friday. I am going to put up with all the stuff that has been going on with me until then and I will go in with a list of issues. Hopefully she will be able to advise me. Kaykay, What is a proton pump inhibitor? miocean
  3. I live on the coast of NJ and this winter we have had a lot of snow, which is unusual for this area. We were hit hard with the first three storms this winter while further north got nothing. This time it was their turn. We got a couple of inches which is now mostly slush. But the ground is very pretty. I like looking at the snow but it is so cold out I prefer to stay indoors when I can. There is supposedly another storm on the way this week.
  4. I developed a dry cough a year ago. My general practitioner diagnosed it as Pertusis, or Whooping Cough. He gave me an antibiotic and cough medicine and it got a little better. When the warm weather came it went away. At least I didn't notice it as much. When the cold weather came around again it started up. It has become really bad, loud and sometimes seemingly impossible to get rid of. I have started coughing at night to the point where my husband can't sleep. He has been sleeping in the other bedroom. Sometimes my coughing brings on the dry heaves. Not fun.I have now developed a new thing, constantly clearing my throat. I don't have any mucous to clear out but still have the need to clear my throat. I did research on the internet and both of these things can be signs of lung problems, which I have, or signs of GERD, which I also have. They can also be caused by the use of ACE inhibitors and I have been on Enalipril for 5 years. So what do I do? What doctor do I see, pulmonologist or gastrointerologist? I think both of mine are good doctors but neither knows much about scleroderma. To them I am the Scleroderma Lady. Are you familiar with these symptoms? miocean
  5. Shelley and enjoytheride, Thank you for your responses. Shelley, your info about Gene's lung transplant was really informative and helpful. I hope he continues to do well. I know the kidney transplant and the weeks following will be difficult for both my husband and me. However, last night at the end of dialysis I got sick. I felt like I was going to pass out, my body got all tingly and I threw up. I was sick all night long and am just starting to feel better. I haven't become sick in dialysis for a while but in the beginning it would happen all the time and it reminded me how much I hate it. I guess I will just have to be brave and go through with whatever the transplant brings. miocean
  6. Hi Pickles, I agree that you should find out the reasons for the tests. But don't worry if you have to have the catherization. I have had two due to abnormal stress tests. Before the first one I was a nervous wreck and scared to death because I didn't know what to expect. Although you are not put totally to sleep they give you something that makes you really relaxed. The only thing I felt was the needle going in. I switched cardiologists and the second one was even smoother. The recovery is long as you have to lay flat on your back for several hours to prevent blood clots. It is the only way the doctor can see what is really going on. Good luck! miocean
  7. With a kidney transplant in the near future I have been reading a lot on the internet about it and post transplant care. I have managed to do what I did when I was first diagnosed with scleroderma. I read too much and scared myself to death. I remember going to a doctor for a diagnosis and mentioning my fear and he told me to get off the internet. I did for a while and than I found this site which answered my questions and calmed my fears. You have been a great support group. I found a dialysis/transplant support group that meets at my hospital once a month and went to my first meeting this month. They were able to answer some questions and share their experiences. Last night at dialysis my nephrologist came around and I mentioned to him that I was scared. He asked why and I told him I was concerned about all the drugs I would have to take and he talked with me about them, both the good and the bad. I had read about isolation after the surgery and he told me it wasn't as bad as I read. I was concerned about being in intensive care and being intubated and he told me they need to do that because of the anesthesia they give you and to make sure you start breathing on your own. So I feel a little more confident in the procedure. My doctor said with all the risks it is far safer than being on dialysis. Take care of your kidneys and watch your blood pressure. I never realized how much they do for your body.
  8. Good news today! I am going to see my cardiologist today and had blood work for my hemoglobin on Monday. I called for the results and I am now at 12.6 which is in the normal range. I am feeling a lot better. I still get short of breath but I am not gasping like I was. Thank you for all of your responses. they really helped me. I was getting scared. I will find out what minor pulmonary hypertension means today
  9. I am glad that no one else is suffering with calcinosis on their lower buttocks. It is really getting bothersome. Last night I wore jeans to dialysis. I usually wear soft stretchy pants. After 3 hours of sitting in the chair my butt started to hurt. I will never make that mistake again! I looked up calcinosis on the buttocks on the internet and they had a site with pictures. Oh my goodness, they were horrible looking! I hope that doesn't happen to me. miocean
  10. My mouth is always dry. Thought it was because I am on fluid restriction due to dialysis. Last winter I developed a dry cough which was diagnosed as pertusis or whooping cough. I took some meds and it got a little better but now that the cold weather is here again I am very dry and coughing. It's like there's a part of my throat that is dry and I just can't get to it, hence the cough. I put a humidifier in the bedroom thinking it might help but my cough has become so bad at night that my husband moves to the couch. I feel badly but can't stop the coughing. Another new development is that I am constantly clearing my throat. That is annoying too, for both my husband and me. Does anyone else do that? miocean
  11. Craig, Thank you for your informative response. I had a right heart catherization a couple of weeks ago. It showed no blockages but the doctor said I have minor pulmonary hypertension. The pressure on the right side of my heart is 45% instead of 50%. I see him Wednesday and have a lot of questions. I am not sure what minor pulmonary hypertension means although I have been reading about it on the internet. Thanks. miocean
  12. Thank you everyone for your responses. After a couple of weeks of increased Procrit, protein shakes and trying to eat better my hemoglobin is now up to 10.6. 12-16 is normal so I am getting closer. I am still a little short of breath but not gasping like I was. Hopefully, as my hemoglobin goes up that will go away. miocean
  13. Shelley, I am so sorry to hear that Gene is having trouble with his transplant. I hope the meds don't make him too sick and that they solve the problem. He's been through enough, and so have you. miocean
  14. Pam, I am so sorry you are going through all of this. It is so frustrating when you know something is wrong but the doctors just don't seem to be able to put things together. I certainly hope you don't have to have part of your tongue cut off and will be holding you in my thoughts. miocean
  15. miocean


    Moe, I made a mistake on my post. I got a humidifier, not a vaporizer. I started using it again this year because I was coughing in my sleep and it has really helped. It is a good investment. miocean
  16. miocean


    Moe, I am sorry to hear you have diffuse scleroderma. I have had it for over 5 years now and one of the things that drove me crazy was the itching. It seems to be a major problem to those with the disease. I tried all kinds of oils, lotions. and medications to make it go away. I was taking a very hot bath every day so now I stay away from them and I got a vaporizer for my bedroom to moisten the air in winter. Those things seem to help. I am not itchy now, maybe it just goes away on it's own. miocean
  17. I took metoclopromide (reglan) for five years, ever since being diagnosed with scleroderma.I wasn't having any symptoms that the drug treats but took it diligently like a good patient. I was taking 3 pills a day. About two years ago after taking my pills or eating I would throw up. My doctor advised me to increase my dose to 4 pills a day. That really didn't make any difference. Then I developed tremors. At first I thought the shaking was just weakness but then I got scared and thought it might be Parkinson's. I went to a neurologist and she diagnosed it a postural tremors. They started to get worse so in October 2009 my doctor gave me permission to go off them. I still shake but not as badly. I did some research into reglan and found that it causes a condition called tardive kenesia. The literature said it shouldn't be taken for more than 11 weeks and I was taking it much longer. My scleroderma specialist suggested I look into [a medication which has been banned by the FDA in the U.S. due to excessive death rates] which can be ordered from Canada and the U.K. I read about it and did not like what I saw. The side effects are dangerous and I don't have any symptoms to make it necessary. Has anyone had experience with these medications or tremors? miocean
  18. The other night I was watching t.v. when I heard the word scleroderma mentioned. I wasn't really paying attention but caught the end of it and saw it was for people who need help heating their homes. I have seen the commercial two times since and it show black and white photos of this couple who have been through grade school together to old age.He had to retired when he got cancer and now has scleroderma as well. They showed his hands all curled under and his wife having to do everything for him. They needed financial assistance for heating their home so Joe for oil delivered some to them, I live in New Jersey. It is probably a regional ad. At least the word is getting out. miocean
  19. Shelley, Do you know how old the donor was? The reason I am asking is I am at the top of the list for a kidney transplant but all I've been offered is expanded criteria kidneys. These are donors that wouldn't have been accepted years ago but due to the shortage of kidneys are being offered now. The donor is usually in their 60's with underlying physical issues.I have been turning them down. Once again I wish you and Gene the best. miocean
  20. Shelley, That is great news! I am really happy to hear the transplant was a success. Best wishes for a happy life together. miocean
  21. I was called again a couple of nights ago for a kidney. This time it was a woman 68 years old. All of the kidneys I have been offered have been expanded criteria kidneys which don't last as long. I told them I probably wouldn't qualify for a transplant now because my hemoglobin is so low. Sooner or later everything will fall into place and the right kidney will come up for me. miocean
  22. Hi All, It was interesting to hear your stories of your weight gain and loses. I found out that losing weight has not necessarily been good for me, My eating habits were not good for a couple of months and now I find my hemoglobin is low which will probably interfere with a kidney transplant. I have to eat better but my appetite is not that good. I find I have to make myself eat which is a first. I fit into my clothes much better since the weight loss and that feels good but in this case I think the bad outweighs the good. miocean
  23. Nikpik, You have found a great place to come for support and answers. It is reassuring to hear that you have had scleroderma for 20 years. I have diffuse scleroderma and have had it for five years. It is not aLways easy to deal with so I admire your determination. miocean
  24. Dear warmheart and Margaret, Thank you for your responses. I immediately went on line and looked up anemia and sure enough I have some of the symptoms. One of the causes can be renal failure. The complications of scleroderma never end. miocean
  25. In previous posts I have mentioned that I have Interstial Lung Disease and was put on oxygen upon exertion. With the advent of the cold weather I had had difficulty breathing and experience shortness of breath upon minimal exertion. I went to my pulmonologist and had a CT scan and chest X-ray. He told me for the first time in 5 years that my lungs had no crackles and that he didn't think that the lungs were the problem because my CT scan an pulmonary function tests haven't changed in a year. I went to the scleroderma specialist and she said the same thing and they both suggested I see a cardiologist. She also mentioned that my hemoglobin was low and that it could be the cause of it. It was a 9. My cardiac cath came back clear as I just posted. My hemoglobin has been dropping. It is now at a 7. They are reluctant to transfuse me because of being so close to a kidney transplant. My Procrit dose has been increased and they hope that will bring it up. I know I haven't been eating right for the past couple of months and have been losing weight. That was in another post. Too much fluid around the lungs can cause shortness of breath but they have been taking a lot of fluid off in dialysis and it doesn't seem to help. Any experience of low hemoglobin causing shortness or breath? Is there something my doctors and I are missing? It is very frustrating. miocean
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