New here and new to HD. I started dialysis in April 09. Lupus kidneys is what they call it. I asked if both kidneys were affected and she said yes. although only one side was biopsied several times. I just finished training and this is my second week at home. still coming to terms with all of it. I suffered from RA for 14 years since I was 31 and developed a lot of deformities in the last 5 years. Also sjogren symptoms started about 5 years ago and now recently told I have lupus so they are calling my condition mixed connective tissue these days. I also developed pulmonary hypertension when the kidneys started going bad so many diagnoses, a lot to take in and process and so that is where I am right now.
Just thought it would be a good idea to talk with others in similar circumstances. I am on plaquenil. prednisone, and other dialysis meds. although I have taken all RA meds and antiinflammatories for years. but with dialysis and other conditions they feel this is the safest thing I can take.
The lupus is active and I am losing my hair at warp speed. I am married and men are very visual, so concerned about my appearance at the moment. hopefully the hair will come back eventually.
well that’s all for now. hope to hear some of your stories and how you got to this point. and how you are getting along with home hemo dialysis.
take it easy.
Welcome, Eagle Eye! It sounds like you have a lot of challenges medically, so I’m really glad you found your way to a type of dialysis that gives you a much improved chance for a good quality of life. We’ll look forward to hearing more from you.
Thanks! Me too. Take care.
hi eagle eye,
blimey U sure are havin a lot to deal with right now. I lost my hair 5 years ago after my last transplant actually, and it is a difficult one for sure. Fortunately it grew back, it did take a while. There are some great wigs (apologies if even the meer mention of a wig is too much) available now, so maybe an oppertunity to go blond or become a red head or take on whatever persona you feel like. Who knows it might have a fun aspect for yourself and your husband until your own hair grows back. I also got into pretty scarves so I felt more feminine and funky scarves to feel well funky I guess, depending on my mood on a particular day. When I was about a year and 6months on in centre 3 days a week dialysis, I started to lose a lot of hair again, and I was sure I would lose it all, but it just got very fine and has improved greatly since. I think its to do with a low haemaglobin level but I’m open to correction. I’ve learnt a great deal of life lessons with regard to body image over teh last few years, and never forget you are so much more than your physical self. I hear what you are saying about the importance of the visual for men, believe me I still have my insecure days and wonder how anyone could find me attractive, but give them a little credit in their ability to see past that with the person they love.
So take care
I wish you all the best
Bye for now