Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello all
As most of you probably already know I had both kidneys removed a couple of weeks ago and now have hemo diallysis to clean blood and drain fluid. They are struggling to work out my baseline weight as fluid filled kidneys were neve rweighed and I was already in excess weight due to the fluid that I struggled with before my operation.
Basically my point is this- I have not eaten normally for 2 years and have more or less managed on milkshakes. My weight has not plummeted as you would imagine it has increased, so before my enlarged kidneys and liver started presenting problems my normal weight was around 10 stone, although I have been up and down and previously been 7.5 stone so in general I am not a big person. As my heating habits became more and more restricted,( sometimes forgetting to eat as I had no hunger pains and lost complete interest in food) my weight became more or less static at around 13 stone.
My kidneys have now gone and so have my eating problems so Im practicing a low fat healthy eating plan as my goal is to get down to a 'normal' weight.
Do any of you know how I am to lose this weight i.e does it turn into fluid so it can be drained off ? and if so how am I meant to know whether I have reached my baseline or not.
Part of the reason I am asking this is because my dialysis nurse took it upon herself yesterday to put me through 3-4 hours of dialysis but only drained off half litre (half kilo) so my weight is much higher than when I went into hospital for my op, possibly now bordering on 14 stone. This has put me in a poor position with my health as I ahve struggled with my breathing again, and my abdomen wound is very sore as it is very distended again due to the extra fluid pushing against it. I am carrying excess fluid around my middle and knees and thighs, however they only seemed concerned with my ankles. I explained to her that my feet have been up for a couple of days due to another fall I had and so luid has accumalated around my middle. She seemed to accept this but then did'lt ell me what she had planned for my fluid drain. I was absolutley mortified at end of session when I found out what she had done as I have struggled to keep to my strict fluid restriction of 500 mils, when in fact I could have drank as much as I wanted and still been in the same sick state that I am in today.
I have had to go back on painkillers as my tummy is very distended again and pressing against my wound so I have been totally laid up since the last session. With me being new to this I really don't know whether they will take any suggestions from me about the extra fluid I am carrying and my basline weight so wondered If any of you dialysis experts can help me work this out to put a suggestion forward. I am now overloaded and will probably be really sick during my next session as they will need to take even more off. I am also demotivated and have drank more than my 500 mils today- although not by much. I'm beginning to feel guilty so will balance this out again tomorrow before dialysis. Any suggestions would be appreciated
As most of you probably already know I had both kidneys removed a couple of weeks ago and now have hemo diallysis to clean blood and drain fluid. They are struggling to work out my baseline weight as fluid filled kidneys were neve rweighed and I was already in excess weight due to the fluid that I struggled with before my operation.
Basically my point is this- I have not eaten normally for 2 years and have more or less managed on milkshakes. My weight has not plummeted as you would imagine it has increased, so before my enlarged kidneys and liver started presenting problems my normal weight was around 10 stone, although I have been up and down and previously been 7.5 stone so in general I am not a big person. As my heating habits became more and more restricted,( sometimes forgetting to eat as I had no hunger pains and lost complete interest in food) my weight became more or less static at around 13 stone.
My kidneys have now gone and so have my eating problems so Im practicing a low fat healthy eating plan as my goal is to get down to a 'normal' weight.
Do any of you know how I am to lose this weight i.e does it turn into fluid so it can be drained off ? and if so how am I meant to know whether I have reached my baseline or not.
Part of the reason I am asking this is because my dialysis nurse took it upon herself yesterday to put me through 3-4 hours of dialysis but only drained off half litre (half kilo) so my weight is much higher than when I went into hospital for my op, possibly now bordering on 14 stone. This has put me in a poor position with my health as I ahve struggled with my breathing again, and my abdomen wound is very sore as it is very distended again due to the extra fluid pushing against it. I am carrying excess fluid around my middle and knees and thighs, however they only seemed concerned with my ankles. I explained to her that my feet have been up for a couple of days due to another fall I had and so luid has accumalated around my middle. She seemed to accept this but then did'lt ell me what she had planned for my fluid drain. I was absolutley mortified at end of session when I found out what she had done as I have struggled to keep to my strict fluid restriction of 500 mils, when in fact I could have drank as much as I wanted and still been in the same sick state that I am in today.
I have had to go back on painkillers as my tummy is very distended again and pressing against my wound so I have been totally laid up since the last session. With me being new to this I really don't know whether they will take any suggestions from me about the extra fluid I am carrying and my basline weight so wondered If any of you dialysis experts can help me work this out to put a suggestion forward. I am now overloaded and will probably be really sick during my next session as they will need to take even more off. I am also demotivated and have drank more than my 500 mils today- although not by much. I'm beginning to feel guilty so will balance this out again tomorrow before dialysis. Any suggestions would be appreciated
I only had dialysis when I had my right kidney removed and the second was sluggish stating again. But I remember that last day when the doctor came in and asked the tech how much had been drained. She said just short of a litre. It was then that the doctor (after 6 weeks) said that he would give me lasix IV and he was confident that the kidney was ready to function. And, thankfully, it did. I can't advise however as out of the 12 weeks in hospital I ate for the first week and was able to eat again for the last week. I had to have a feeding tube put in.Now my kidney cancer has returned to the kidney I had a partial nephrectomy on. We are just watching it. But I would not at all be surprised that I eventually end up on dialysis as well. Have you heard of the website webmd.com??
Excellent source of information for total health. You may want to take a look at it. I'm sure those that can really give you some answers will post soon. I think most of us are busy with our Turkey day tomorrow (Thanksgiving). Can you not get a better answer from your doctor if the nurse is not forthcoming? My thoughts and prayers are with you. I'll keep in touch.
Hope you have a fantastic day tomorrow and please stay positive
in your case, since you don't have kidneys, you need fluid removal and not doing so will cause you problems as the fluid will put pressure on your heart and other organs. what you may be considering extra weight may be fluid that should be removed.
please speak with your nephrologist about your "dry weight" and where it should really be.
Thanks Julie x
I knew spiderwoman would help you out with the dialysis issues. It sounds like yiu really need to take note of what the medical crew have said about taking things easy. You need to be resting a great deal more than you are, probably. Family can think that they're doing the right thing encouraging you to get up and moving, but as you say, you are not ready for that. The only thing that concerns me slightly is the risk of thrombosis from inactivity. Have you benn given some (very gentle) leg exercises to practise periodically to avoid this? Just twirling your ankles every 30 minutes can help. I know that this is a very frustrating time, but you must take the time that your body needs to recover from all the trauma you've been through. We'll be here to keep you company.
Love Chewitt
Yes I have been doing some leg exercises, obviously only gentle like you said but they have also been giving me quite high shots of heparin in my dialysis which reduces the chance of clots. I might just ask them for surgical stockings as well or get some from pharamcy if they stock these. Thanks for the advice
Julie x