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Everything posted by miocean

  1. My advice would be to go to the best doctor for Sjogren's Syndrome you can, even if it means traveling a distance. Usually you do not have to see the specialist more than a few times a year, and if they communicate well with you and your local doctor you will have the best team working with you. Best wishes to you, miocean
  2. I hope you can get your son into a specialist quickly to answer some of your questions and address your concerns. Thinking of you, miocean
  3. Dear quiltfairy, I am an optimist but I am also a realist. Last week I had to return to my transplant center because I have been having issues with my 5 1/2 year old kidney transplant. At the end of the time with the doctor I asked of the likelihood of me being listed for another transplant if and when this one fails. He told me with all the medical complications I have along with my age I would be very difficult to list. I appreciated his honesty and didn't want to mistakenly think I could always get another one in the future. I have been turned down for lungs at 2 centers. My recent pulmonary function tests have my diffusion at 17%. I've had to limit my activities because even with oxygen I feel short of breath. I am experiencing a lot of GI issues that now include some fecal incontinence. I live in a multi-level condo and often wonder how much longer I will be able to manage it and what plans for the future I should be making... I actively pursue healing. I understand that healing is not a cure. It involves many factors that are physical, emotional, and spiritual. Like you, I maintain all my medical appointments and prescriptions and I practice self care with meditation and energy work (Reiki.) I go to a therapist and have chiropractic adjustments and massages on a regular basis. I do everything I love to do: spend time with family and friends, try to create new social relationships, go to the beach, travel, paint, and I am showing and selling my work. I find if I have things to look forward to I am less depressed. There are days I want to hide away, wish it all away, ignore the fact that my body is not behaving itself. I give myself "medically free days" when even though I should probably be making a call to set up an appointment I don't, and I stay off forums and sites. I have learned through the years with scleroderma that there will be ups and there will be downs and to try and ride them like the waves in the ocean. I mourn the things I have lost and celebrate what I have. I try and plan for the future, both the positive and the negative. And I try to enjoy the moment. miocean
  4. HI Judy, I don't know anyone with scleroderma who have stomas, I know several who have them for other reasons. I know you have tried everything if you are at this point. Do you have any issues with healing? I imagine that would be the biggest concern about the surgery itself. I had some slow healing from my kidney transplant but believe it was due more to sloppy placement of the staples than my healing ability. Thinking of you, miocean
  5. Has she seen a cardiologist? There is also pulmonary hypertension which can be secondary to scleroderma. There are many things that could cause those same symptoms. This must be very difficult for both of you. All kids want to do is be normal. Keep looking for answers and definitely get a second or even more opinions. miocean
  6. I have had a difficult time of it the past six months, suffering from food poisoning, going into acute renal failure twice, a hospital stay, another day of fluid infusions, suffering extreme fatigue and weakness, an increase of shortness of breath, chronic diarrhea, rapid weight loss, going to doctors and for tests including a kidney biopsy...I was beginning to get depressed and didn't want to read anything about scleroderma or post very much. But today it was like a switch was flicked and I feel like me again. My labs are "stable" although my creatine is still high at 1.87. My urine is not quite as foamy. The changes in medications have reduced the diarrhea so for the first time in years I am not constantly in the bathroom. I started physical therapy and already feel a little stronger. I went to my chiropractor today and the receptionist commented on how good I looked. I went to my salon for my massage and nails and several people also commented on how good I looked. Someone asked me if I got new glasses, which I haven't, and said I looked different.These are people who see me every week. I was able to go shopping tonight to a big store and walk around slowly without my oxygen. I have no idea what tomorrow will bring. My pattern recently has been a good day followed by a day of needing to rest. I will gladly take the gift of today and hope for many more like it. I just had to share this will all of you! miocean
  7. Hi Margaret, I am happy to hear Gareth came through his surgery and hope that his recovery will go smoothly. That is bizarre about the way his insides are though. It never showed up on any of the pre-testing scans or anything? Thank your for sharing and give Gareth our best! miocean
  8. HI Margaret, I am hoping you are enjoying your vacation and the Gareth is having a great time. I hope all goes well with the surgery at the end of the month and that the recovery goes smoothly. By the way, we all know that nothing about scleroderma is normal! for Gareth! miocean
  9. My doctor called yesterday with the results of the biopsy and lab work. As far as the biopsy: I have vascular damage to my kidney, probably caused by a high prograf level due to the dehydration that is repairable. There is also some stenosis and he doesn't know if it was there from the donor or something new but it is not scleroderma renal failure. Of course, I thought of all the good questions to ask him this morning, like did the stenosis show up in the biopsy 4 years ago? I also have the report of the donor kidney that showed some scarring but I am not sure what that means in regard to the stenosis. He became my doctor after the transplant and the report is probably buried in my huge file from all the years on dialysis. There is improvement with the changes to the medications. I am not longer spending hours in the bathroom every morning. I started physical therapy and I am working on being stronger. I am taking a mini-vacation from medical issues for a few days. I need some medically free days! miocean
  10. Amanda, I am sorry you have hit another bump in the road. It's so frustrating. I received the results of the biopsy and the great news is that I am not in rejection. I do have vascular or tubular damage that is fortunately repairable. This is most likely due to dehydration and a rise in my prograf (tacrolimus) level. Even though the transplant drugs keep you from losing your kidney, they are also nephrotic to it. I will be monitored closely for the next 6 weeks with frequent labs to make certain all is in the normal range. Thank you all for your kindness. I am very happy with the results and plan on a upward trend here! miocean
  11. Everything with the biopsy went very smoothly. The out patient unit was practically empty so it was quiet and calm. The nurses were very attentive. The biopsy process has changed since the one I had four years ago. It was guided via a CT scan. The team worked well together and the radiologist explained everything clearly. They gave me light sedation and then lidocaine locally before taking the tissue samples. Back in recovery I had to lay still for 2 hours where the first time I had to lay still overnight. I was home by late afternoon. I have no blood at the site or in the urine so all is good. My doctor said they might have the results by Friday but the radiologist said next week. I told my doctor about my concern that it could be the medication but he doesn't think that is causing it. We'll just have to wait for the results. miocean
  12. Even with the IV fluids my creatine is climbing so on Wednesday I am having a biopsy of my kidney transplant. I had one a year after transplant when my creatine hit 1.6 but it is now at 2.4. Although the doctor does not think it is rejection, better safe than sorry. No wonder I've been so exhausted. Interestingly, when I got out of the hospital my creatine was 1.3, a good number for me because I usually run 1.4-1.6. So I began to think, what am I doing differently? Aha! My GI doctor started me on cholestryamine to control the diarrhea. So I googled whether it can raise creatine levels and in a very small percentage of people, it does. Tomorrow I will call my nephrologist and pass that information on. I know he will still want to go ahead with the biopsy, but since I had one before I am not freaking out. Too many variables for me to figure out but I was the one to diagnose my scleroderma... miocean
  13. Shelley, You always make me laugh! You hit the nail on the head about bathrooms! Good reading material is a must and if not available the labels on anything handy will suffice. I had two IV fluid infusions at my doctor's office this week and today started the Azasan (Imuran). It's too early to tell anything but I am keeping my fingers crossed. I have to go for blood work next week and then every two weeks for 6 weeks. My prograf levels are also high due to the dehydration so I have been very shaky and have headaches. If things don't calm down I will be referred back to my transplant center where "hopefully" they will have a GI doctor who is familiar with issues like this. I have a prescription for physical therapy and start next week. I am so weak and fatigued. It seems like every year I am getting weaker and weaker. Last year we went on a vacation to Maine I had been dreaming of for years and did a hike that I could barely finish. This year I wouldn't even attempt it. However, one thing I have learned about scleroderma over the years is that things change. I never really understood what a "flare" was, but I feel I am just having a flare. It is not fun and somewhat scary because it reminds me so much of how I felt when all of this so suddenly began for me. Then I think of how I miraculously felt so much better after the kidney transplant. I am looking a this as a bump in the road, one that is not insurmountable. This too shall pass. miocean
  14. Jo, it is reassuring to hear you've had no problems on the drug. I am at the doctor right now getting the IV fluids. can't wait to feel better. I hope the different medicine will be life changing as far as dealing with the diarrhea.
  15. I've been suffering with ongoing diarrhea since my hospitalization in May. I have lost 25 pounds that I fortunately had to lose (and I will probably find them again!) I look great but feel very weak. I had blood work done last week and I am dehydrated again, with my creatine rising. It is now 2.14 so tomorrow my nephrologist is going to call and either tell me to go to the infusion center of to the hospital to be admitted for a short term stay. It looks like one of the anti-rejection medications for my kidney transplant might be the culprit so I will probably switch from mycophenolic acid to imuran. I am a little nervous about the change but cannot live my life with the incontinence I have been going through. I don't want to eat anything because I am not sure how it will affect me. Sometimes I vomit as well. I know some of this can be attributed to damage to my GI tract from scleroderma but am hopeful that a change in medication will cause improvement. miocean
  16. Ron, I don't know if the doctor will want a RHC but I have had several and they are not that bad. Mine have all been through the groin but they can also go in through the neck or wrist. You don't need any more anxiety worrying about something. You'll feel better once you get the tests results. Even if they aren't perfect, it is better to know that to be worried. miocean
  17. My tendon friction rubs sounded like hinges that needed oil. It was as if you could hear the tendons moving against each other and that they needed lubricant between them. I had no cracking sounds. I had them in my wrists and ankles.
  18. Dear Bill, I am very sorry to hear this. What kind of scleroderma do they have? The tendency for autoimmune diseases does run in families. 8 of my 10 female cousins on my mother's side of the family have autoimmune diseases but I am the only one diagnosed with diffuse scleroderma. None of them are first cousins either. This forum can answer many of your questions as you move forward. miocean
  19. I hope that wonderful memories will heal you and your family's grief. Thank you for including us as part of "your family" in this passageway of life. miocean
  20. Dear Quiltfairy, I am sending thoughts of peace to you and your family at this time. Miocean
  21. I'm so glad they have found the reason for Gareth's pain. I hope they can move forward now with a plan that will help him in the future. for Gareth! miocean
  22. Pain is a difficult thing to deal with on any level, let alone being unable to describe it and the location. I hope Gareth is doing better and great for you for pursuing this. I have a mentally disabled, non-verbal sister-in-law who lives in a group home. Several years ago after suffering severe pain and being unable to walk she had her hip replaced. The doctor said, with the condition of her hip, another person would have been totally incapacitated! Last year, after acting like the other leg hurt, the group home took her to a doctor who wanted to do experimental surgery on her knee. Her sister and guardian pursued it and insisted that she see the first doctor and have him look at her hip. Sure enough, it was the hip and not the knee and she has now had that one replaced and is doing better. If the issue hadn't been pursued relentlessly, she would have had to go though an unnecessary surgery. Everyone should have a person who advocates for them like you do for Gareth. Please let us know how he progressing. miocean
  23. My CT scans always say NO CONTRAST! I even have contrast listed as one of the things I am allergic to on my medication list. I have had High Resolution CT scans (HRCT) for the past 11 years and they can still pick up changes. The contrast is hard on your kidneys and since I was in renal failure and currently with a kidney transplant it is not used. Can you question if it is a HRCT and if contrast is necessary? If you are told they have to use contrast, make sure you drink a LOT of fluids to flush it out of your system. If there is any question about your kidney function, ask if it can be done without it. I did have a doctor question the "allergy" to contrast and he said that it isn't a real allergy and if it had to be used they could use it. He was an endocrinologist, not a lung or renal specialist. Please keep us posted and I am hoping you have good results. miocean
  24. Ron, I just replied to another post of yours asking about testing for pulmonary hypertension and see your answer is here. The shortness of breath issue is interesting. This afternoon I was able to go to an appointment that involved going up stairs and back with no issues and went into a large store, walked to the back and stood in a long checkout line without my oxygen with no problem, yet earlier in the day I was short of breath with my oxygen walking up a slightly angled ramp. Go figure. miocean
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