Posted , 4 users are following.
Can anyone shed any light on this issue for me?
I know the reasons behind the swollen abdomen, I've been diagnosed with pkd for 30 years and currently stage 5 so it's not exactly new news to me. But my tummy!!!! I'm naturally skinny, 30inch waist and low body fat, but it's my pregnant tummy, (I'm a guy)
Has anyone had any success reducing the tummy by either toning or cyst aspiration.
0 likes, 7 replies
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helen54849 weeled
Posted
Hi,
I am sorry to hear about your tummy, its not fun whatever your sex. Are you taking any meds?, the reason I ask is because steroids give you a protruding tummy. Are you on any other meds? perhaps have a look at the leaflets in them if you are to see if it is a side effect. Also worth a mention, if you decide to do peritoneal dialysis you will get that kind off tummy its called "PD belly" you can sort that though, I went to metafit when I had it and it went so there is hope. Good luck.
weeled helen54849
Posted
Mess are fine Helen. It's the size of the kidneys pushing everything out the way. TBH, I hadn't thought about the steroids in the future post transplant. I'll be a skinny wee fat person. Lol
helen54849 weeled
Posted
Hi,
You made me chuckle then lol sorry. You don't get given steroids as a matter of course any more I thought you did and panicked about that but you get two anti rejection drugs now usually prograf and mmf (It has a long daft name so MMF for short) prograf has its own issues too little and you reject, too much and you reject. That is what happened to me I was poisoned by it not just once that was in the specialist tansplant hospital I am now back with my own hospital who listen. I had acute cellular rejection caused ny too much prograf, my levels were at daft levels and I told them loads and they wouldn't listen!. I had 3 days of strong IV steroids which made me feel sick and I was off my face by the last day when hubby came to pick me up. He had to travel the whole hour home with me laughing at myself in the car wing mirror, I must of found myself hilarious lol. Then for a week after I couldn't move pain everywhere it was horrible. Had the same when I had steroid injections when I was pregnant. So in December i knew my levels were too highI had tremmors from hell and my hands felt like they were on fire (had this last time so I knew) was sent back to transplant hospital who denied it was toxicity (even though they wrote it on my discharge papers) I had to go on predisalone then and I was dredding it. However nearly 3 months down the line im down from 20mg to 5mg and am ok no moon face and no weight gain, my hospital laughed and said I was the only person on their books to lose weight on steroids but that is me opposite girl so don't worry hopefully you won't need them. If MMf doesn't suit you, gives you terrible diarrhea then there is myfortic that suits me better. I am on 14 different meds a day at the mo so be prepared for that. I started on the straight away after the op they didn't tell me what they were just plonked a massive pot of pills on the table and said take them. Each one causes something else that is why there are so many, but they do reduce so fear not. Is it painful then everything pushing forwards sounds awful for you if I am honest.
weeled helen54849
Posted
No, not painfull. Just aware. Tshirts and jumpers look like they've been ironed over a wok now. Sometimes tight when breathing as the lungs struggle to inflate but on the whole it's not the worst. I spoke to my neph regarding epo as you mentioned. Apparently my condition is one of the very few degenerative kidney issues that doesn't effect epo production. Woohoo. Lol.
helen54849 weeled
Posted
Hi,
Ironed over a wok
it is important to keep a sense of humour and laugh at ones self I did it all the time, my PD catheter was my party piece, that thing was bloody famous lol. That is amazing that that you don't have to have EPO every cloud and all that and one less bit of jabbing and stabbing to endure. My silver cloud was "you need dialysis, here have a nice garden shed to keep all the equiptment in" so I got a free shed haha.
jerimih weeled
Posted
sorry about this . Why haven't you gotten a transplant.
jerimih weeled
Posted