From what I have read, the SLE is worse on the kidneys and the MCTD component is harder on the lungs, especially for those with the sclaraderma component. And the folks on here tend to also have those issues according to their diagnosis. Are you now on dialysis?
Mary Ann

Thank you Mary Ann for your kind thoughts and thanks again for asking about my dialysis-experience... Unfortunately my SLE/MCTD-body reacts to each and every dialysis-treatment (three times a week) with some SLE/MCTD-flare-up-symptoms ...
... And next week I shall have a complete medical check-up to be put on the kidney-transplant-list and hopefully things move into the right direction from then on. Of course, I am wondering, how my SLE-MCTD-body is going to react to a kidney-transplant, plus the immunosuppressants which have to be taken every day from then on. I am wondering about all that, because in the past my body reacted with an allergic reaction to all immunosuppressants and as a result I could not be put on any of them...
But I shall remain very positive and hope for the best...
Thanks again and kind regards from Kristina.

I am sorry to hear that, Kristina. You have probably already thought of this, but have you looked into nightly home dialysis? One of my old friends-- who had no partner, roommate or caregiver, by the way-- did that while she was awaiting a transplant, and it was much easier on her body.

A nurse came in sometimes to help her, but it was still ridiculous the stuff she did in near total kidney failure, carrying big bags of solution upstairs. Not easy, but way better than the three times a week thing, it bought her a lot of time while she was waiting for a transplant. I'm also told that how MUCH dialysis is done in each treatment (in hospital) is an issue, too-- some people take on too much and it wipes them out.

Thinking positive thoughts, keep us posted.

Best,

--Cat

Thank you Catalyzt for your kind thoughts.
... Yes, it is true, my husband and I have thought about me having dialysis at home, but to accommodate this, we would have to move to a bigger place to have space for a dialysis-machine and all the necessary equipment ... and unfortunately I don't feel quite strong enough for such a huge upheaval .....
But I am very fortunate with my dialysis center, because all the nurses are extremely helpful, very professional at all times and they are also very nice people and all that makes me feel quite alright to go there for my regular treatments.There is also always a doctor present to assist and to make sure about things and that makes me feel calm about my regular treatments ... Also the machines are very new and therefore kind to my body and - touch wood - everything is going well and - touch wood again - it hopefully continues like that ...
... Of course, life would be much easier and certainly much better if I would not need dialysis, but since I need dialysis three times every week, I feel that I am well looked after at "my" dialysis-center ...
I also make sure to keep myself as fit as I possibly can and my husband and I go for our regular walks and I am also lucky that my husband is very supportive and assists me also to keep my kidney-friendly-diet...
Of course, being wiped-out after each dialysis-treatment is the price to pay for having dialysis, but there again, dialysis continues to keep me alive and I feel very positive about it all and hopefully my next adventure comes along one day with my kidney- transplant...
Many thanks again for your kind thoughts and keep well,
Kristina.