miocean

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Everything posted by miocean

  1. Saw my scleroderma specialist yesterday and brought up the calcinosis again. She said I would have to have them surgically removed. I told her that was not an option at this time and she agreed. Then she asked to see them. I showed her and she touched a spot and it hurt so badly that I literally jumped! She brought in a sample of a patch that is about 4-5 inches in diameter. She said to cut it into pieces and put it over the calcinosis. You can leave it on a week and shower and bathe with it. I haven't tried it yet but she also gave me a prescription for them so I will let you know how it works. I guess that someday I will have to have them removed. I'll cross that bridge when I come to it. Thank you for all your replies and for posting the picture for others to become aware of this. miocean
  2. This morning I received a call from the University of Maryland with an offer of a kidney. They wouldn't tell me the age of the donor but said it wasn't an expanded criteria kidney and that the person died of a head trauma. They have to test it for infection and match my blood with it. It has a very low creatin level which is good. There are two people in front of me and they are going to call another candidate. They told me to go along with my normal day and expect a call around 4:00. Maryland is about 3 hours away so we would have to make arrangements for my husband to stay at a hotel while I am in the hospital. I'll let you know what I hear this afternoon. miocean
  3. Well, the call never came and when I called them I couldn't get an answer at two different numbers so I guess the kidney went to someone ahead of me. I am disappointed and encouraged at the same time. Disappointed because it sounded like a good kidney and encouraged to be near the top of their list too. It also prepared me for traveling a distance for the transplant and the arrangements we will have to make. When it is the right time, the right place, and the right kidney it will happen. I will call Maryland for some more info and answers to questions. Tonight I have a dialysis/transplant support group meeting and a doctor from PA is coming to speak with us. Thanks for all your well wishes and support! miocean
  4. Since I started this post my pain and discomfort from the calcinosis has become worse. It is becoming difficult to sit even on softer surfaces. I put a pillow on my computer chair and it helps a little but I still have to adjust my position every once in a while to move the pressure to another spot. I see my sclero specialist on Friday and will definitely bring this up. Last I showed it to her she said I could go to a general surgeon and have them removed. I don't think surgery is an option for me. The area is too widespread for one thing. Another is I can't have surgery being this close to a kidney transplant. If I lost blood and needed a transfusion it would totally mess up my tissue typing in my blood. From what I have read there is no cure or prevention for calcinosis. Those of you who have had surgery and experience success are very fortunate. Over the five years that I have had scleroderma I have been very fortunate not to have any pain. I would read posts from others in pain and feel so sorry for them. Now it is my turn. What do you do for the pain? I think I need some kind of pain management. I have also developed two new spots of calcinosis on my little finger. Thanks for any responses. miocean
  5. Kamlesh, I am sorry to hear you are having lower body pain and hope that everything turns out well with your tests. It seems like it never ends. You seem to be doing an awful lot of things with working all week, walking several times and exercising. No wonder you sleep 10 hours on a weekend! I am retired on disability and not working and I sleep that much every night. If you need it you need it. Here's hoping we hear from you again soon and that things are going better. miocean
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. Shelley, That is great news! I am really happy to hear the transplant was a success. Best wishes for a happy life together. miocean