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Everything posted by miocean

  1. Erika, It was February of 2004 when I started having symptoms os scleroderma. I would wake up in the middle of the night with my arms and hands tingling and in pain. My hands became very sensitive to touch. My skin hardened quickly. It started with my arms and legs but spread to my back and my chest. I was stiff and found it hard to move. I was diagnosed in August and went to my scleroderma specialist in September. She used the Rodman scale to test my skin and the score was 45. My skin started softening about a year and a half ago which I think was a natural progression of the disease as I wasn't on any medication that would cause it. In March of this year my skin score was a 16. I am a little more flexible although I still find it difficult to get in certain positions. You can pinch my arms a little bit. People tell me I have more expression to my face. I hope your skin softens, too. miocean
  2. Deb1million, I am sorry to hear about your kidneys.I hope they don't fail and that you don't have to go on dialysis. Dialysis exhausted me. I was on the 3:00 p.m. shift and finished up around 7:00. I would come home and be in bed by 8:30 and would sleep late into the morning. Then I would take a nap in the afternoon. I didn't feel like doing anything. Sometimes I would get really sick during dialysis, pass out and throw up. I would also get really bad cramps that HURT. That happens when they take too much fluid off. I had a catheter for the entire time I was on dialysis. My vascular system wasn't strong enough for a fistula or a graft which is an access in the arm. I'm glad because it's easy to hook up a catheter, no pain, but the access in the arm is done with needles and they tend to bleed afterwards. It's the preferable way though because catheters are prone to infection. I was careless with my first two catheters and they got infected. I had to cancel a trip once and do at home infusions for one infection. Then I had a catheter that lasted four years. It was just replaced in January because it broke. You are not allowed to get a catheter wet. I had to wash my hair in the sink and take baths. It became increasingly difficult to get in and out of the bathtub. I worked around it by getting a shower chair and a hand held shower head. I would just be careful not to get the catheter wet. I wasn't allowed to go swimming, which was difficult because we live by the ocean and I love to sim in it. Do you have any urine output? I didn't so I was restricted to 32 ounces of liquid a day. That was the hardest part. Now that I have to drink a lot of fluid I don't know how I ever did it. Do you know what your creatine is? Mine was 8 but is now down to 1.2 which is in the normal range. I have read a lot about dialysis and transplants and one thing I read was if your kidneys are failing you should get on a transplant list. Take with your nephrologist about that. I waited a year after kidney failure to register because I was told that with scleroderma renal failure the kidneys can come back and I was convince that mine would. I was on 3 lists and it took 4 1/2 years to get a kidney. I hope this helps and that you don't have to go on dialysis. miocean
  3. It's hard to believe that a month has passed since I had my kidney transplant. I am feeling much better but my incision hasn't healed so there is no bending or lifting. Monday I have an appointment with the surgeon to check it out. I may need a few more stitches. I can start driving again. I am still in isolation for another month and starting to feel like doing things around here that I have been putting off but can't do them because of the restrictions. I am having problems with diarrhea so one of my anti-rejection medicines has been reduced and I have an appointment with the gastroenterologist on Wednesday. My prednisone has gone from 60 mg a day to 30 and will drop again next week. The goal is to get down to 5. I had my dialysis catheter taken out last week. No more tubes hanging down my chest and I can take showers again and wash my hair under the water. What a luxury! I had my kidney stent removed Monday and was very nervous about it but it ended up to be nothing. It was over in a minute. I've had some but not all of my staples removed. So I am making progress. The problems I am encountering are minor, at least my body isn't rejecting the organ. It was very confusing organizing all my medications but I think I have it right now. There was major confusion at the hospital when new labs were added but that is also straightened out. I still have scleroderma and the organ damage and secondary conditions that go along with it but I know the transplant will improve my quality of life. miocean
  4. Michela, I am on oxygen too, sometime 24/7, sometimes just when I exert myself. It depends on how I feel. I flew to Florida in December when I was having trouble breathing and was concerned about going without oxygen. There are some portable tanks that are FAA approved. You can find it on the airlines website I believe. I called the company that takes care of my oxygen and asked them if they had an approved tank. They were able to provide me one for the trip. I had to notify the airline and let them know I was bringing it. It does not count as a carry on, at least not on the airline I flew. I ended up not needing it but it as a relief to have it in case I did. It is still possible to travel with 02 so check it out. miocean
  5. Hi everyone, Never did get the new imac. I just didn't have the energy to go get it and then got sidetracked by the kidney transplant. A good excuse I think. I can't go in a mall for several more weeks so I am dealing with my old one with the bad monitor and that constantly has to be rebooted. There are some pages I can't read because of the monitor and forget videos, I can't see them. If I feel it is important I'll watch it on my laptop but I really prefer the desktop. Soon I will have a new toy. miocean
  6. I'm happy today because I am feeling so much better since my kidney transplant. It is amazing! I will be in isolation for several more weeks and am starting to get a little bored. I am very limited as far as my activities but I think when I am able I will have much more interest in taking care of things. But it it well worth it.\\miocean
  7. I found a great cure for coughing,Have surgery in your abdomen!!!! I had a kidney transplant on March 11th, coughed once after it and it hurt so much I haven't coughed again! I also think being in the hospital and elevating my head helped. I didn't get a wedge pillow yet, if I start coughing again I will. I am still clearing my throat but at this point in time that is the least of my worries.I do think it is related to GERD and thank you for making me aware that it could be the cause. miocean
  8. Shelley, Thanks for sharing about Gene's transplant. I am worried about the bleeding but my doctor doesn't seem to be that concerned. Otherwise I am feeling pretty good, not in pain from the surgery anymore and not using oxygen all the time. I do use it when I go to the hospital for labs and to the doctors. I get a little out of breath when going upstairs to the bathroom but it is better than dragging that long hose around and having the cannula up my nose. The bleeding does seem to be easing up and has turned more watery. I can get my dialysis catheter taken out next week. It will be good to be rid of it. It served me well over the years but limited my activities. I am happy with my new nephrologist, he seems to be on top of things and updates me on my labs and medications frequently. All in all, I feel much better. miocean
  9. I am doing pretty well since my transplant. My blood work is good and carefully monitored. I saw my doctor today and he said I am doing well. My new kidney is working, I am constantly going upstairs to go to the bathroom. I am still having issues from previous posts. The calcinosis on my buttocks is very painful and there is nothing I can do about it now. I'll have to wait several months before I will be eligible for surgery. Right now I sit on pillows and put up with the pain. The dry cough I had for months which my scleroderma specialist said was probably due to GERD has stopped. Nothing like having surgery to make it go away as it hurts a lot to cough! The only thing I am concerned about is I am still bleeding from the incision. The ultrasound showed everything to be okay and my doctor doesn't seem to be that concerned. The bleeding has changed from a dark red color to more watery and seems to be slowing down. I know scleroderma makes it harder to heal. I have only had minor cuts over the years and they have done fine. Can anyone share their experience with healing with me? I would really appreciate it. Thanks. miocean
  10. When I first got scleroderma my hair started falling out ad became very thin. Over the years it has thickened again but I still have fine hair. I color it but it grows slowly so I don't have to do it that often. I just had a kidney transplant and am taking high doses of prednisone, I read that it can make your hair dry and brittle so you should tell your hairdresser if you are on it so she can really condition it. I can't go in a salon for five more weeks so I will definitely be ready for a full work up! miocean
  11. Just wanted to update you. I had my first set of labs drawn yesterday. I warned the tech that I was a hard stick. It took her two tries, finally used one of those little butterfly needles which work better on me. I have to go two times a week so I guess I'll get used to it. Fortunately, needles don't bother me that much, it's just that I've become really spoiled as for the last 5 1/2 years they have used my catheter to draw blood. I also had an ultrasound of the new kidney. I am still bleeding and the doctor wanted to make sure everything is ok. The tech said it is a beautiful kidney! It is quite large, I guess my donor must have been a big man. I have been losing weight, lost 12 lbs. since Monday. I am sure it is all fluid. I mentioned to the doctor that I was losing weight and he said not to worry about it, that with the prednisone I am on (60 mgs.) I will start putting on weight. He is hoping to get me down to 5 mgs. a day in the future. I am feeling pretty good. all things considered. The pain is is getting less. I am just very tired. I got tired of seeing blood on my underwear and having to wash them so I had my husband go the the drug store yesterday and get me depends underwear. That way when they get bloody I can just throw them out. I can't believe I am wearing depends but one has to do what one has to do. I have to measure my urine output and have to release two liters a day. That hasn't been a problem! I also have to drink two liters a day which isn't easy after years of fluid restriction. It is nice not being thirsty all the time though. My appetite isn't the greatest but I am trying to eat. Thanks for being there for me. miocean
  12. Thanks for all your kind words. I saw the doctor today. He wasn't that concerned about the bleeding from the incision but wants me to have an ultrasound tomorrow to make sure there isn't a problem. I also start my twice weekly blood work and weekly doctor visits so instead of going to dialysis I will be running around doing that. Fortunately my husband is able to take me and is being such a good nurse, changing my bandages and doing everything for me. All of my tests will be done at a local hospital that is in partnership with my transplant center so there isn't too much traveling involved. It is really strange to urinate again. It seems like I am going all the time. I am becoming fast friends with my bathroom! It is good to be home. miocean
  13. I had the transplant on the 11th. So far it has been very successful. I started putting out urine right away and my creatine has gone from 8 to .6. Normal is .1-1.2 and my donor's level was .7-.8 so I am actually lower than he was! The hospital was better than I expected. I had great nurses. Now I have to deal with taking tons of meds and keeping records of my temp. weight. and blood pressure every day. I am back on oxygen 24/7, at least for a while. I return to the doctor Thursday but they are allowing me to see my local nephrologist who is only 15 minutes away. I am in a little pain and my incision is still bleeding but otherwise I am doing well. Thanks for all the good thoughts you sent my way. miocean
  14. Received two calls today from two different centers. Didn't get the first one but am heading for a hospital about an hour and a half away. Wish me luck. I'll be back as soon as I can miocean
  15. Just wanted to update you. I tried the patch my doctor recommended and really didn't experience any relief. My worst area of calcinosis is in the crease where my buttocks meet my upper thigh so it was a very uncomfortable place to put the patch. I took it off yesterday and am still experiencing pain but no worse that with the patch. Good thing she gave me a sample and I didn't get the prescription filled. They are pretty expensive. miocean
  16. I had a heart catherization in January due to an abnormal stress test. It showed minor PH. My cardiologist said it was so minor he wouldn't treat it. When I saw my scleroderma specialist last week she looked at my report and said when you have scleroderma it should be addressed as soon as possible. She had me apply for Letairis. I had to fill out an application for it which is the first time I have had to do that with any drug. The LEAP Program for Letairis called me today for my prescription drug medication information and told me they would call my insurance company, get it approved and then have it mailed to me. It should take around 3 weeks. Must be very expensive. I read a little about it online and saw that the liver has to be carefully observed with monthly blood tests. So it is a little dangerous. If the disease doesn't kill me the meds will. Anybody know anything about this drug? Anybody on it? Thanks for your help. miocean
  17. Dsly, Welcome to the forum. I am sure you will find a lot of answers to your questions. Is the mass on your spine calcinosis? I hope your second surgery solves the problem. miocean
  18. It has been very interesting to me to hear your stories about your weight gain/loss. My weight keeps going down. I went to my scleroderma specialist yesterday and the first thing she said is you are losing weight. You lost five pounds since I saw you in January ( I am now close to my 150 goal). She didn't think this was good and I reminded her that once I came to see her and she commented that I had gained weight and I might have to diet like the rest of us. I can't win. The bad thing is I don't have much of an appetite and find I really have to force myself to eat. Apparently when you are sick doctors prefer you to have a little extra weight as a buffer. Then she said that after the kidney transplant I'll be taking a lot of steroids and will gain weight. I hope that doesn't happen as I feel better now at the weight I am at. I have never been able to keep a steady weight unless I was heavy otherwise it has been up and down, a real yo-yo. Let me know how you all are doing. Thanks. miocean
  19. I went to my scleroderma specialist yesterday and addressed the issues I have be having with the cough and throat clearing. She asked me if I had post nasal drip. I said I didn't think so. I brought up the lungs and she said all my tests have remained the same for a couple of years so that is not it. She does want me to go for a six minute walk test which she has requested before I haven't had it done yet. I guess this time I won't get won't get away with not doing it. She wants me to have it at her hospital right before my next appointment with her which is in June. I brought up GERD as many of you said that was the cause and she said that was probably it. She suggested I get a triangle shaped pillow that raises the head of the bed. I can't life the bed in the front because of the way that it is built. I am out of my medicine as prevacid is no longer covered by my insurance. I have been taking the solutabs because the capsules were making me throw up. I didn't remember which doctor prescribed the solutabs but she said that doctor would have to call the prescription company and fight for me to have them. I came home and looked at the label and she is the prescribing doctor! So I will have to call her Monday.In the meantime she suggested I take over the counter prevacid so I will get some today as I have been experiencing really bad heartburn. I brought up the ACE inhibitor and she said I have been on them for so long that if they were causing the cough it would have shown up sooner. So I guess I got an answer. Thank you to those who responded and I hope this helps other who may experience the same issue. miocean
  20. 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
  21. 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
  22. 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
  23. Do you use a laptop or desktop? Is it a mac or pc? I have both but prefer the desktop. They are both macs. My desktop is old and the monitor doesn't work well so we are buying a new one. We went yesterday to look at them and are going back next week to get it. They will move all the things off my old computer to the new one for me. I am excited! I got my laptop when I got sclero, I didn't know how sick I would be and whether or not I'd be able to go up and down stairs. Fortunately that hasn't happened. miocean
  24. 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
  25. 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
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