Dialysis Support
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ADVICE Please Proceed to dialysis or not ???

Dear All, my Dad is 88 and has a GFR of 14 and dialysis has been suggested. Dad isn't keen but generally isn't ever keen on any treatment as he has an incredibly positive attitude and feels he can manage without interventions !!!! His appetite is good, his mind bright but he is sleeping a lot more than usual (very tired) and is becoming itchy. Please what are your experiences of dialysis, would you think he should have it ? Dad has a great zest for life and as his family we want him to be around as long as possible. Dad's due see the renal clinical nurse specialist for further information. He usually travels abroad to Europe in the summer where healthcare is excellent but worries dialysis would prevent this. All warts and all advice would be greatly appreciated. Best and kindest wishes to you all wherever you are on your dialysis situation xxx

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We have two 90 year olds on my shift in my center. One of them has been on dialysis for about 9 or 10 years and does travel from Massachusetts to Maine in the summer and has dialysis there. You would have to have the center staff find out if there are dialysis facilities where your father would like to travel. His specific dialysis prescription and any special instructions would go along with him. I am talking about hemodialysis, but there are other options that others can tell you more about like peritoneal dialysis. I would tell him that dialysis is not the end of your life, but it is a life change that can help you go on to live your life!

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Thank you so much for your reply, I real!y appreciate you taking the time to respond. It is fantastic to hear of people older than Dad having dialysis, this will be really positive for him to hear :-) I love the idea of explaining this as a life change that can help Dad go on to live his life too...... Thank you so much :-)

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You're welcome - Have a good day!:)

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If your father is so active and loves to travel then consider home dialysis with PD or with the NxStage machine. He can tag it along with his travels and still do his treatments. Ask the nurse specialist about this. It can and is done with many people. Good luck.

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Hi, I know it’s so hard to hear when your told you or your loved one needs dialysis. I can see your Dad’s position of just carrying on, it’s not denial, it’s just being strong, but it was explained to me similar to what cs65 said. dialysis will help continue with carrying on with your life not stop you. There are lots of options to consider, I am about to start peritoneal dialysis. The nurses talked me through everything and explained that you can still travel you just take the stuff with you! I have recently booked to Crete for my brothers wedding and the travel agent has arranged for my machine to go in the flight with me (free if charge) in addition to my normal luggage allowance. The liquids etc are sent by courier and my hospital arranged this for me by directly contacting the hotel and arranging for them to accept delivery and they will send to my room for my arrival! It was amazingly easy to arrange.

The best thing I can advise is to speak with the nurses and ask lots of questions no question is silly and the more you and Dad find out the more you can put things into perspective.

Good luck with whatever he chooses. x

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Thank you for taking the time to reply and your advice. I think asking lots of questions is definitely the way forward. Dad was so heartened to hear of people similar age to him having dialysis and I think your words "dialysis wil! help in carrying on with life and not stop him" are brilliant too. Thank you:-) Have a most fabulous time at your brother's wedding in Crete :-) Sending kind wishes :-)

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Hello. It's great that he is positive about life. But if his gfr is that low, dialysis is something to consider. It would get rid of the toxins and bacteria that his body could be in his body and not filtering well, which is what dialysis would do for him and he wouldn't be as tired. There are different methods including 2 that he can do at home over night and with those, his dietary and fluid restrictions wouldn't be that bad. The itchiness could be phosphorus issues, so he would need a binder to take before eating and there very well be some things that needs to be cut out, like dairy, nuts, for example. U can get a complete list if you Google foods high in phosphorus. I hope this helps, but just we are always here for help. Wish you all the best in this situation.

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I replied to myself TamekaS ! By accident ! Late at night here ! But your rep!y is below Thank you :-)

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Thank you for phosphorus advice and for taking the time to rep!y, much appreciated. We hope it won't be too long until Dad can speak to the dialysis nurse and really talk through everything. It's a shock to receive this news at 88 and Dad says "my kidneys can't be that bad!" Sending kindest wishes and thank you for the support :-)

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I just love ur dad's positivity. Just FYI a good gfr is 60 or above

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Thank you :-)

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There are quite a few elderly people on my shift and I tell you what, they're generally the most positive people there. If dad's still spunky, dialysis is his best option to continue living. It's hard, I won't lie and it's quite an adjustment. But, travel is still possible as long as you give the center at least a month's notice. They take care of everything for you. You're a good daughter and I'm sure your dad will fight through this adjustment period to have more time with you all. My first day of treatment the tech told me this is my new part time job. My paycheck is my life. Hope for the best for you and your family!

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Thank you for replying :-) I love the part time job analagy... Brilliant :-) If you have time I would be interested in more detail about the challenges of adjusting to life in dialysis to share with Dad.... warts and all !!!! I want Dad to have as much information as possible so he can really make an informed choice. Thank you again. Sending best wishes :-)

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When I started this process, I had no guidance or clue what to expect. So my first day at the center was awful!!! I had my first two treatments in the hospital with one tech who sat by my bed and talked the whole time to me. When I was disconnected, he held my "holes" in my arm until the bleeding stopped. He wrapped it up and that was that. When I went to the center, I had no idea what the procedure was. First, you weigh yourself. This helps them calculate what your 'dry' weight is. They use this number to determine how much fluid to remove during treatment. Then they direct you to a chair. Now, you get very very cold during treatment, it's because by they're removing the warm blood from your body. Plus they keep it cold to keep it sterile and for the machines. So tell Dad to bundle up in layers, and wear a hat. Year round and when it's hot, you can de-layer when you leave. Once hooked up they monitor blood pressure and check in on you. Bring snacks, a book or laptop or phone. They have TV and cable! Mostly I try to sleep but it's noisy with beeps and alarms. I cried during my first time, and the tech told me I couldn't be needy there. And that I should stop being a baby. Boy I felt like an ass. Soooo embarrassed! When she disconnected me she asked if I held or used a clamp. What???!!? No clue what she meant. You hold your own arm until the bleeding stops. Not like the hospital. If you have arthritis or are unable to hold they have clamps that they put over the needle holes. You get bandaged, weigh yourself again after treatment and then you get to go home. Three times a week for me it's three hours at a time. But I'm barely 90lbs so most patients are 3 1/2 to 4 hours. I was exhausted and wiped out. I had anxiety so bad I didn't want to go back to that place. It took me two months to get the courage to change centers. Best decision ever! My new place is great. My staff really care about us and they make me laugh. That is a beautiful thing if you can laugh while they're draining your blood!! If they take too much fluid off, your dad will cramp something fierce. Tell staff immediately and they'll put some fluid back in. It takes a little guess work to figure true weight from water gain. I'm lucky in that I still pee so I can drink more fluid than most who no longer pee. I'm trying to think of everything I can to help him know what to expect. Any other help I can offer is yours! Please keep me posted on Dad and his progress. Take care.

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Thank you Kimberbaby :-) Dad is seeing the family doctor tomorrow so we will see what she says about the potential for dialysis. Unfortunately I live 1 hour 45 min drive away and working tomorrow so can't go with my parents to see her with them, but will get the update afterwards, I may even ask that Mum calls me whilst there so I have a bit more of an idea about what is said if I'm not too super busy at work. Your top tips are great thank you so much, they will be really useful if Dad does go for it....... Thank you :-) 22.37 here and up early tomorrow for work so big thank you again and night night :-)

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It stinks you can't be there but calling during appointment is definitely a good idea. Good night, I'm praying for you!

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I love the conversation between u and Kimberbaby, lots of good advice, not much to add other than remember everyone is differently, so our bodies responds to things differently, but always be aware, and always always ask questions, no matter how crazy u think they might be. Wishing ur dad much success with this as well as the family, gaining lots of understanding. Remember like Kimberbaby said we are always here for any extra concerns and questions u might have. Hugs and kisses to you both. Take care.

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Thank you TameskaS, advice much appreciated Have a good day :-) x

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Hi Tameka! You've certainly taught me how to help others, thanks for that. It feels good to be useful! Love and best wishes for you!!!!

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I'm glad I was able to be a blessing to u, so u may be a blessing to someone else 😘

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Hope your Dad made out well at his appointment. Thinking about you and hoping you got some answers!

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Thank you Kimberbaby. Apologies delayed rep!y,been v. busy. So Dad and Mum visited the family GP and Dad asked if she thought it was a good idea to have dialysis. She felt this needed some consideration and will speak to Dad's renal consultant. She said there was not a huge rush to make any decisions and Dad felt better for this so that is good 👍Since then Dad feels he and Mum should have their annual European ho!iday (they visit Mums native country for two months every summer) and then start dialysis. I feel a bit uneasy about delay and the length of time they will be away, but will see what happens. Dad has yet to speak to the dialysis specialist nurse so we'll see what happens then. Dad is back to his usual positive self so that's good :-) Thank you for your support. Hope all good with you. Sending Kind wishes ☺

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Oh I'm relieved all is well! I figured you'd be busy with everything. How are you doing? This must be very hard for you to deal with and it's an overwhelming amount of info to take in and process. Extended travel is a worry for Dad, especially 2 months with such a low GFR. Not to be personal, but is he able to tinkle still? If he is fluid retention won't be as bad. If he doesn't, you have to be careful fluid doesn't build in his lungs. Oh I worry for you!! I'm glad he's in good spirits at least. I hope you are doing good too. Take good care of yourself and know you are cared for, even if it's some girl in Philly!

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Thank you kimberbaby. I don't mind the personal question at all and yes Dad still tinkling so hopefully that is a good sign. I'm visiting this weekend so will see how Dad and Mum are doing. We speak every day but Dad is sleeping a lot. Thank you for your messages of support, they are much appreciated :☺

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P.S : I will show Dad and Mum this site and all the support there is and brilliant responses when I visit this weekend and I think they will be amazed and grateful (as am I) of the kindness of strangers. ☺xx

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I'm glad you'll get to visit your parents. It will give you some peace of mind at least. The toxins in dad's body are what's making him sleepy probably. You're a good kid, mum and dad are lucky to have you to look out for them. Best wishes and safe trip. Keep me posted and God bless!

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I'm concerned about your dad... But will keep him in my prayers. Still love his positivity... He has the mind and soul that nothing will keep him down... And I simply want him too be ok Ms worrieddaughter50

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By the way, I think it's so cool that I now have a friend "across the pond"!!! I'm so grateful for this community and how we all help one another. I've never been outside of the US but through my dialysis center I've met people from Trinidad, Haiti, India, Belarus, the Dominican republic, and the Ukraine. Before my illness I was a social worker and a sociology teacher. I thought that part of my life ended but it's actually expanded my knowledge of other cultures and worlds outside my own. It's a hard but fascinating journey, so thank you for being a part of my international experience!!

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I'm sorry I had this on Kimberbaby post, lol...

I'm concerned about your dad... But will keep him in my prayers. Still love his positivity... He has the mind and soul that nothing will keep him down... And I simply want him too be ok Ms worrieddaughter50

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If your father is so active and loves to travel then consider home dialysis with PD or with the NxStage machine. He can tag it along with his travels and still do his treatments. Ask the nurse specialist about this. It can and is done with many people. Good luck.

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Thank you Mystical Unicorn that is really useful and helpful to know ☺I am visiting this weekend so will show Dad and Mum all these messages. Best wishes to you ☺

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Hello,

I have been on peritoneal dialysis for 3 months and do feel better-feel more perky but still sleep a lot. I am 71 yrs old. There is a lot of baggage with PD and you have to be fastidious about handwashing and hygiene.You can go away for trips and Baxter will send the PD fluid to the hotel or ship. It is a new way of living and you do the dialysis overnight which is convenient.You spend quite a lot of time with tests and follow up.

Martyn Cusworth

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Thank you for replying Martyn much appreciated. It is so helpful knowing what is available and brilliant to hear you feel more perky on PD. Thank you again. Sending best wishes ☺

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Hi we went to USA last November with home dialysis machine , had a great time . We also go away in our caravan with it , just needs a little forward planning but its very doable , plus hubby no longer dozes quite as much since starting dialysis

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Good to know dozing reduced and travel very doable... Thank you for replying ☺Sending best wishes ☺

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Hello Worrieddaughter50, I was feeling exactly the same as your dad and finally had the courage to start dialysis. It is not at all painful and its a matter of just lying down on chair/bed and let the machine do the work!!! It is important to start the dialysis as it surely will reduce the itching. I had severe itching before dialysis and it became so worse that my skin started to peel off. When the dialysis started, the itching was almost non existence. so please convince your dad to start dialysis as soon as. Best regards.

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Thank you, the itching is very troublesome for Dad so it's great to know dialysis reduces and even stops it Thank you for taking the time to respond Best wishes to you ☺

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My mother is 79 yes old and she was diagnosed with stage 5 Kidney failure in Nov 2017 with an EGR of 15. She felt fine. She is now EGR 8. She had a PD catheter fitted 5 weeks ago and is doing her training this week for home dialysis. kidney disease is like standing on a cliff edge and you can start to feel very unwell quickly. We were advised to get her PD line fitted whilst she was feeling well. Otherwise she wud end up having an emergency line and that isn't ideal. So far she is doing fine but her symptoms are worsening. She shud feel better when she starts. Please try not to worry. I worry if there's nothing to worry about, but my mind had been put at ease. There is no reason he can't travel. Baxter's medical supplies are shipped all over the world. He will be fine xx

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Thank you JojoSmith, this is really comforting to hear and I feel reassured by the time scale of your Mum's egr going from 15 to 8. Hopefully Dad can have time to get used to this idea and embrace dialysis when the time comes. My best wishes to your Mum and thank you for replying ☺

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Hi Worrieddaughter, I also used to use hydromol ointment in the areas which were itching on non dialysis days and this helped a lot. The ointment is like E45, but bit more stronger. Worth buying a small tub from Boots to try out.

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