Posted , 8 users are following.
I'm not from the U.K. But maybe someone can help me. I'm in stage 4 renal failure and feeling pretty bad most of the time. My nephrologist is pushing for dialysis but I'm pretty torn. If I go ahead with dialysis will I feel better? I just can't see putting myself (and my wife) through this if I'm going to feel the same.
2 likes, 19 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
TCup doug68605
Posted
doug68605 TCup
Posted
Hi
Thanks for the reply. You're right, here in the states it's 100% my decision and it's a tough one! Good luck on your journey.
gayle14m doug68605
Posted
Hi doug68605
I'm stage 4 and feel rough a lot of the time just like you. My consultant as gone through all the different dialysis options with me and my husband to discuss at home. What's options have you looked into?? How soon will you need to make a decision. Don't be pressured into it. I'm going for home dialysis. To start. You can run that through the night . Hope lve helped a bit (tried).keep in touch with what you decide. By the way if I'm being to noisy please don't answer but how does your egfr have to be in your country?to be before the doctors consider dialysis.
doug68605 gayle14m
Posted
Hi Gayle
Thanks for the reply. No you're not being nosey, I asked for it. I think home dialysis may be out of the question because we live in a very small house and don't have the storage room. Here they start talking about it at <20; I'm at 17 but still have some time. Thanks
helen54849 doug68605
Posted
Hi,
Dyalysis is for you and your dr to decide together. You are in the bit of your journey that I called limbo when I was in it. You are very poorly but may not be quite there for dialysis just yet. In the UK (it may be different where you live) they start talking about dialysis at about 15% but they go on symptoms and how you feel also. You will be feeling pretty crap right now and I feel your pain. Tiredness was my main issue then the fact I couldn't eat, I couldn't even look at food without wanting to be sick. My poor husband tried everything to temp me so not very nice for him. I just couldn't do it. I started dialysis when I was about 7% my GFR dropped a lot quicker than my drs expected it to so it was quite a rush in the end to get my tenkhoff catheter in place. I did peritoneal dialysis at home every night for 8 hours when I was asleep. I guess you need to start looking into which type suits you and your life. Try not to worry about your wife, I bet she just wants you to be well. Families get used to it. My son was 3 at the time and he used to sit and ask me questions about the machine and stuff, I always answered honestly but so he could understand. My daughter on the other hand was 16 and wouldn't entertain the fact of even coming in the same room as the machine or talk about it, I didn't force the issue. As for feeling beetter depending on which type you do depends on how quick you feel better. I haven't done heamo so I can't give concrete advice about this. I started to feel better after about 4 week on PD but please keep in mind that it is not to make you better but to keep you alive so you will not be 100% but you will feel loads better. Even if you have been expecting to go on dialysis your whole life like I have its still a shock when the time actually comes. You get used to it though pretty quickly and it becomes part of your life, like eating breakfast or driving your car. Good luck with this next part of your jouney and I wish you well.
doug68605 helen54849
Posted
Hi Helen
Thanks for your reply. You're right, it's my decision. I don't know if pd will work. How much area must be alotted to storage of chemicals etc? We live in a very small house a houseboat, actually. You're right about being in limbo. I feel like a lost puppy! My wife is knocking herself out trying to help and sometimes gets very discouraged and it's hard for me to watch. Your comments do offer some encouragement though and I do thank you for that. Thanks for your support.
helen54849 doug68605
Posted
Hi Doug,
Regarding storage are you moored on your boat? the reason I ask is because you can store your supplies in a shed. I live in a house but it is full of my family and so the hospital gave me a shed (you may have to buy one) to store my supplies in, I had a delivery every month to last the month but Baxter are really good and I am sure they can do two week deliveries. I just brought a weeks supply into the house as it needed to be warmed up, its cold in the mountains you know
. If it is warm where you are you could keep all your stuff in the shed and get it out each day. You don't have chemicals its bags of fluid and lines and cassettes for the machine and small clips for connection. Mine was always ok in the shed at the bottom of garden and it is not worth stealing as no one but you can do anything with it. Talk to your dr and see if it is possible, it will give you much more freedom in the day and a better life but again this is your choice. I wouldn't say I loved PD but it fitted for me personally I can't say about heamo there are really heavy fluid restrictions and food restrictions on this one and if they pull off too much fluid you feel awful but do your research and you can always change if one doesn't agree x
doug68605 helen54849
Posted
Hi Helen
Yes, we are moored in a marina but dock space is very limited and we don't want to give up our "tiny home". If it's not too much trouble could you tell me how big your shed is? I might be able to make it work. You have been very encouraging! Thank you!
helen54849 doug68605
Posted
Hi,
Its about 6ft x 4ft so not big and like I said baxter can deliver every two weeks, they can in the uk but they are an american company. When my machine broke down it was a nice lady from your neck of the woods that I spoke to they really are fab I phoned about 3am our time and had a new machine by 10am so you can't fault them. If you explain your situation I am sure they could work something out with you. I don't blame you not wanting to uproot, sounds a lovely enviroment to live in. I really love the sea, could stay for hours just sitting, looking and listening. Its worth investigating both types fully then you can make an informed choice. I went to our local heamo unit and asked if I could look round, while I was there one of the patients offered to talk me through it and that way and by researching I was able to decide it wasn't for me personally. Like I mentioned if you start on one type and its not for you, you can always change. x
doug68605 helen54849
Posted
Helen
We haven't actually moved on board yet; we're in the process of selling our house. Living on a boat has been a lifelong dream of ours and now that it's about to happen, this. We have the boat, we have the place and we have the desire. I had already told my doctor that I wanted to do pd when the time came. (I've done my homework) Now that I've heard from you I think it might be do-able. Thank you so much for the encouragement but mostly for giving me hope.
helen54849 doug68605
Posted
Its no problem so glad to be of help. You should always follow your dreams life is too short. Your dream is happening so enjoy it how fab living on a boat. I hope the move goes well and everything works out for you, I am sure it will. Take care.
caroline1547 doug68605
Posted
Hi Doug
I'm at stage 5 and at 10.
The consultant admitted me into hospital to prepare for dialysis last summer.
It's now February and I'm reacting well to the cocktail of meds that I'm on.
Certainly the bicarb has had the most effect on me as the pain in the shoulder has ceased to an a click (from acute pain only eased by strong codeine)
The EPO injection has stopped the tiredness and fatigue.
Is it possible you can be prescribed these meds as I would be where you are now without them.
Caroline
doug68605 caroline1547
Posted
Hi Caroline
Thanks for your reply. What is EPO? I don't know if it's available in the states. The fatigue is the worst part. I can put up with the dizziness and nausea. Thanks for your kind words.
caroline1547 doug68605
Posted
The synthetic form of erythropoietin which helps to produce red blood cells.
Hope it is prescribed in the States as really is worth its weight in gold.
doug68605
Posted
Thank you, Caroline. I'll look into it. Thanks for your encouragement.