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Found 5 results

  1. Transplant outcomes in kidney recipients with lupus nephritis (LN), and systematic review. Kidney transplantation is an acceptable option in patients with concurrent LN and end-stage renal disease. PubMed, Lupus, 2020 Mar;29(3):248-255. (Also see Symptoms and Complications of Lupus and Kidney Transplant) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Kidney transplantation in patients with systemic sclerosis (SSc): a nationwide multicenter study. In our study, patient and graft survivals after kidney transplantation can be considered as excellent and in the absence of extra–renal contraindication, SSc patients presenting with end–stage renal disease should be considered for kidney transplantation. PubMed, Transpl Int, 01/25/2017. (Also see Kidney Transplant) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Two years ago today I was in surgery receiving a kidney from an unknown donor. It is both a happy and a sad day, happy for me, sad for the family that suddenly lost their loved one. My donor was in great health, fell off a ladder, hit his head, and died. His family had no time to prepare or to say their good-byes but they did the most generous thing by giving life to others through donation. I have been one of the lucky ones. The kidney began producing urine immediately and in general I have had a very good transplant experience so far. I have resumed some of the life I lost from being tied to a dialysis machine and have learned a lot these past two years. I am able to travel again and am taking advantage of this while I can. I can contribute to doing things around the house and take some of the burden off my husband who did everything for almost 6 years. I was as excited as a little kid when I was able to carry a small load of laundry downstairs for the first time! Oh, the joy in simple pleasures! I have been exploring my limits and have found that I can't do everything. In all honesty, it took a while for me to comprehend I still have scleroderma and even with a kidney transplant, chronic kidney disease. The hardest thing to deal with is others thinking I am "cured." I look healthier, my skin has softened and I have more energy. Renal replacement therapy (dialysis or transplant) is not a cure just like there are no cures for scleroderma. I maintain my transplanted organ by taking many drugs, some very dangerous drugs with serious side effects. I have had two surgeries for squamous cell carcinoma in the past 3 months and struggle with anger issues from that drug we love to hate, prednisone. I have had difficulty walking and joint pain due to the need for a statin. The fibrosis in my lungs has worsened, but due to the medicines I take for the tranpslant, I can't be treated any further for that. The greatest gift is the appreciation of life and the people in it. We are all traveling on our journey and touch each other as we go. You have been beside me every step of the way. There are no words to express the joy in knowing you except: LOVE miocean
  4. Hello everyone, Well, the jury is in on all my yearly tests and basically I am doing as well as I can be. PFT: 55% lung capacity, 38% diffusion. They are now discounting a test from right after my kidney transplant where it went up to 43% as invalid and that means I have plateaued in the high 30's. Although that is not that great, it is great that it has stabilized. 6 Minute Walk: No desaturation, started at 98%, went down to 96%. This is very good because if I was desaturating along with the low diffusion it could be indicative of Pulmonary Veno-Occlusive Disease. (That was a new one for me and I am REALLY glad not to have it!) Echo: No signs of pulmonary hypertension. Slight enlargement of the heart and some hardening but probably no more that a person my age would have. No need for a right heart catherization. (Yea!) CT Scan:No increase in fibrosis since 2010 although there was a significant increase 2009-2010. No other treatment available since I am on myfortic as a rejection medicine and am on the highest dose. Lipid Profile: Off the statin for two months and my cholesterol has gone from 192 to 205, slight increase in triglycerides. I see the cardiologist next week and we'll determine what to do. The anti-rejection medicine I'm on causes high cholesterol. Kidney Transplant: Creatine is 1.2 and stable at 22 months out. Everything is going well. Skin Hardening: Softened to 0 from 45 on a scale of 0-50 over the 7 years of the disease. So, all is as well as it can be in sclerodermaland. I am following the typical pattern of diffuse scleroderma with sudden onset of symptoms and skin hardening, major organ damage, gradual softening of the skin and then a plateau. If I continue to follow the pattern I will stay where I am, but we all know how that goes and can only hope that it does. You all have encouraged me so much over the years, I hope this brings encouragement to others. miocean
  5. G'day Everyone, I was talking with a lady yesterday and she was telling me about her renal figures. I was gob smacked and totally amazed and even a tad excited but since then I have thought about it and it is so opposite to all that I thought I knew about renal failure that I figured before I get excited I need some feedback from you girls to see what you think. I want to believe it all but as I said it just is so opposite to all that I have known and experienced. If there is some truth to it then I have cause to be excited if not then I need to back up some. My granular filtration rate (GFR) is 25 and I am already symptomatic with all that comes with stage 4 renal failure. I can't do either kind of dialysis and don't qualify for transplant, hence palliative care. This lady told me she was diagnosed at age 14 with kidney failure and had GFR at 25 and lived normally with that until 4 years ago. She is now 41 years old and even had two pregnancies in that time. She said for the past 9 years she has been in end stage renal failure (ESRF) with a GFR of around 10/12. She said she had a fistula built 4 years ago and so far has not needed to use it. She said she is symptom-free except for fatigue. She drinks 3 liters of fluid a day and still works but is in end stage renal failure with GFR 10/12. After I got over the shock I started to get excited thinking perhaps I do have hope if she can be in ESRF with 10/12 GFR and drink 3 liters of water (with no vomiting either), good blood pressure, and working, and no dialysis at all. Has anyone heard of this before? Everyone I have met prior to this when in ESRF are just so very sic. If you don't get dialysis, it's the end! But this lady is doing so well, have I got it wrong and it is possible to live well even in ESRF with 10/12 GFR. Should I raise my hopes for a better outcome with such news or should I be suspicious? I feel guilty questioning her figures as she is such a nice person and I want so desperately to believe her as that does raise my hope. But all that she said goes against all that I thought I knew. If I drank 3 liters of water a day my blood pressure would be so high it would blow my brains out! I'd have constant nausea and brain fog. I reek of urea can even taste it in my mouth and itchy skin and my GFR is just 25 shes 10/12 and fine? I am so so so confused. I want to believe her but I'm scared to. I'd really appreciate some input. Cheers, "G"
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