Hi there.
I have recently been told I will have to see a nurse to discuss renal replacement options.my last gfr was 16.can anyone let me know what happens at this appointment?Will there be more tests?are there any questions I should have ready to ask?any advice would be appreciated.
Hi Peri5!
The nurse will probably discuss how you are feeling and give you a list of symptoms to watch out for (like fatigue, itchiness, retaining fluid in your ankles and many others I can't remember off hand). Your symptoms will help them gauge how long it will be before you have to start dialysis or to apply for the transplant list. She will also let you know the options you will have when your kidneys lose more function (the types of dialysis and how they work, how well you are otherwise will determine if you are a good transplant candidate). I remember the doctor put off starting me on dialysis a couple months because I wasn't having most of the symptoms even though my gfr was down to 5 %. You will probably have to have bloodwork once a month as you get nearer to dialysis, because that's how they can tell how your body is being affected by the loss of kidney function. You might want to have a loved one or a friend present to help you remember questions you want to ask or to take notes. There will be a lot of information to process and you don't have to answer everything all at once. Good luck to you!
Many thanks cs65..so kind of you to share your experience.atleast I can be a bit prepared.till now I have been seeing my consultant every 4mths and have been carrying on pretty much normal.i am anxious as this is going to be a change but I guess it can't be helped.my symptoms haven't progressed at the moment.i do feel tired but it's manageable.i have found it tricky to find out information about diet.also need to ask if i can carry on working with such a low level.hopefully the nurse can advise.amazing to hear that you got down to 5% and delayed dialysis for a bit.i guess I am worried about what life will be like.iv already looked into a few options.just general research.i find PD gives you more flexibility but I understand you have to be suitable for that option.i shall make notes and have my dad come along for support.thank you so so much for replying.its been a great help.i hope you are doing well and shall keep in touch xx
Hi Peri,
Just to let you know that you are thought of and sending strength and healing.
Cs65 is giving you great direction and positives.
Be sure to bring a list of all of your medications and doses.
I agree, ask a friend or family member to come with you and scribe what is said so you not only have directions but can refer back to the appointment and its discussions. I have been bringing a small spiral notebook to mine as well as my parents medical appointments for years. Before my next appointment I review and list questions. Ask questions and make sure that they are answered in layman's terns so you leave with a clear understanding.
Stay strong...it will go fine.
Please let me know how it goes!
Bet
Hi Bet117
Thank you so much for replying to my post.appreciate your kind wishes.i shall certainly take your advice and make notes.its the next step of this journey.i am quite scared but I'll have to face the reality.till now I have managed.i lost my mum in 3 yrs back and that has had a major impact on me.im the only child of my parents.luckily my dad is there to support me.i have many questions about diet,water intake and employment..i do enjoy my job but am wondering if I can carry on with this low function.so yes lots of questions..ill certainly keep you updated.thank you for your support and being there..
xx
Hi Peri,
No thanks ever needed! I care! Write to me anytime!
Honestly, it is perfectly normal to feel scared, nervous and even sad. This is a whole new experience and one that is part of a process. Keep close at heart that you are not alone, you have many friends here who are just a click away on the other end of the computer and will always be there for you. It is all an adjustment to a new normal.
I am delighted to hear that your dad will be with you at this and any other appointments. Let his love give you strength and your mom's wisdom give you courage. I do understand as my mom passed in July of 2016. I carry out her philosophy of life and let the courage/ fight that she displayed motivate and guide me. She and my dad are always in my heart.
As far as your questions, they are all good ones; the best and healthiest foods to eat, necessity of exercise, water, etc. Most importantly what is involved in their program and which method of dialysis is best suited for your health needs. You will feel much better with a clearer understanding of what to expect.
If you want to see the facility, ask them.
As far as working, ask. I recently attended a workshop which dialysis and coping with a kidney disorder in general was discussed. The thought that resonates in my mind and holds true is not to forget that we are people first and foremost.
I did tour the facility with 2 other patients. The nurse told them that the facility opens at 6am and closes at 7pm. Many people come for their treatment before and after work. Speak to your consultant and to the nurse and see how you feel once the process begins.
Know my thoughts and prayers are with you...I send you my shoulder and hand to hold when you need it.
Stay strong!
Warmest thoughts!
Bet xx
Hi Bet..what a wonderful message.gives me great hope and courage to face the next steps.i have my appointment at the end of March and feel I'll be prepared somewhat.to communicate with others is amazing and this forum is truly a god send.iv been on this journey since age 13 and now 41..yes you're so right about parents.even though mum isn't here she is surely getting me through each day..just like your mum mine was very brave.she had breast cancer but even till the end she sacrificed everything for me and dad.kept us going.
Even though I worry about dialysis i say to myself I'll still be me..its just the fear unknown.
I'll certainly ask the nurse if I can attend a workshop.it will give me more of an idea of what to expect.
I think working will keep me going as I don't want to get depressed.hopefully I'll get more info on this..
Appreciate all your kind wishes.they mean the world.i am overwhelmed by your kindness.god bless you.ill keep you posted for sure
Best wishes xx
Hi Peri,
Thank you so much for your heart felt and most beautiful e-mail. It is my very great pleasure to communicate with you and stand by you as you embark on this journey.
No disorder is ever easy; you have displayed amazing courage as kidney issues have been a part of your life for so many years; particularly your teen years. Allow that courage and strength as well as mum and dad's love to see you through this chapter of your life.
I have always believed that challenging life experiences, although annoying and frightening, provide us with the knowledge and power to help and comfort another who encounters the same situation. For me, it makes the pain less intense and even worth it.
We are both children of cancer patients. My mum had lung cancer from smoking. Luckily, due to outstanding medical care and that it was in one lung, she had quality of life up until 1 month before passing. What I learned about this ugly disease, care, nutrition, chemotherapy/ possible side effects etc. has given me the gift to support other family members who are seeing their loved one in the same position. ("I am sorry is not helpful")
So, possible question for the nurse, quality of life!
If you told me that you weren't frightened, I would wonder about you. Fear of the unknown is natural.
Dad will be there with you. Working and seeing friends will be so important as they will give you support and a purpose.
Being that you will be seeing the dialysis nurse at the end of the
month, you have plenty of time to do your homework and come up with more specific questions for the nurse. If you google Davita.com or Davita on-line classes, you should be able to watch a class which will help you come up with questions which will give you a professional lead as what to expect.
It is going to be okay.. You've got to believe! It's not fun or fair, but you are the better person for taking care of yourself.
Please feel free to contact me at anytime and know that I will always respond.
Sending you my strength, friendship and healing thoughts and prayers!
Bet Xx
Hi Bet..what a delightful uplifting msg..iv read it many times.so kind of you to be there and offer your support.i am very lucky to be in touch with you.
I can see we have been through similar experiences.to go through a cancer ordeal is indeed hard for all concerned.im glad your mum was well looked after.on my side my mum had breast cancer stage 4 which quickly progressed within 18mths.it was metastatic and had spread to her lungs,bones and brain.she took each upheaval in her stride.never let me feel scared as she knew it would be devastating even the thought of losing her.iv had to grow up in the last 3yrs even though I'm quite old.i was still a child in her eyes.i do miss having her by my side.she was so lively and positive and wouldve got me through.my dad is a great support.he's had his own health issues but tries his best to keep me upbeat.
You are right no disorder is easy.i read about various cases and all are so brave.even when I was researching for my mother in treatments,chemo, radiation..you realise there are so many people handling health issues and they are indeed inspiring.i shall try and mentally prepare myself for what's ahead.i was diagnosed with lupus initially and that damaged more than half my kidney function.have been trying to protect what was left all this time.
I totally agree with the working element.i think it will be like a break from all the medical issues.i will try my best to continue.
I have already looked at some videos on YouTube..gathering more information so I have something to speak about when i see the nurse.
I'll certainly check out the Davita links.that website is highly recommended.
Your encouraging message is highly appreciated.its heartwarming to know that I have a kind dear friend on the other side who I can share my thoughts with.i hope you are doing well.god bless you.
Will be in touch
Xx
What about taking a tape recorder to take notes?
Hi..that is a very good idea..sometimes it's easy to forget important information..
Hi Peri!
Just wanted to let you know that your life will go on no matter if you have to go onto dialysis. I was able to keep working part-time since I had a flexible schedule as a Caregiver for homebound seniors. I found it actually helps to keep busy and active on my off days. Unfortunately I had a heart attack and cardiomyopathy last fall, so I had to stop working. But I still went to cardiac rehab and have kept busy with that plus physical therapy for my shoulder and doctor appointments. It's a different life now, but you never stop learning and I am still hoping for a transplant! You can get a lot of diet information from that nurse because your diet and water intake will change, depending on what stage you're in (pre-dialysis, dialysis and transplant.) Take care and keep in touch!
Hi cs65
Thank you for your encouragement.i think as I'm heading into a different phase im a bit scared.i agree with your views about working.i also work part time.its a desk job.my employers are understanding.iv yet to tell them about the full extent of my condition but I'm planning to do so very soon.it certainly keeps your mind off things.sorry to hear you had a tough time last year.i do hope you are stable and keeping well.its great to be in touch with such a positive person.very true what you said about learning.everyday something new.fingers crossed you get your transplant very soon.im definitely stuck on diet and water information.ill take this up with the nurse.i thank you so much for your kind messages.ill certainly you updated.look after yourself..x
Hi Peri!
I hope that your employers are supportive, as mine were. I think if I had had a desk job I would still be able to work now. Mine was a bit too physical and could be stressful, so I had to give it up. My husband doesn't want me to be in stressful situations, as that caused my cardiomyopathy. However, my heart condition has resolved itself and I continue to take a daily low dose aspirin and a statin. I recently got off the blood pressure medication since my pressures were too low. I also finished cardiac rehab and am waiting to go to Planet Fitness to keep up on my cardio exercise until the flu season abates. So I'm kind of at a loss as to what to do with myself now. That will pass! I'll be able to do some walking anyway.
For now, I would drink lots of water. Once you start dialysis you''ll be restricted to about 6 cups of clear fluids per day or so. Now I would continue to restrict sodium and once you start dialysis you'll also have to watch your potassium and phosphorus intake. You'll feel better on dialysis if you keep to the restrictions and don't gain too much fluid between treatments. Your nurse can tell you more. I do feel it helps to keep a positive attitude even though some days will be scary. You will gain courage and fortitude as time goes on and you get more used to things. Take care - I'll be thinking about you!
Hi Cs65
Thank you for your advice.im trying to drink water..2ltr..but it is tough in the winter..summer is easier to achieve.since the start of being at stage 4 the doctors have not really given much advice on diet..its been all guesswork from my end.im vegetarian so I hope that will put less pressure on the kidney protein wise..im hopeful with the nurse being involved she can give me more direction.yes I've heard patients feel better after dialysis.everything seems scary to begin with.its given me an idea what to expect.thank you for explaining.
Regarding the job situation I'll just have to explain to them that I have a kidney condition.they will be a little surprised as on the face of it I look ok..as many of us do..im hoping they will be accomodating.
You have done amazing controlling your heart condition.you sound like a positive person and that helps.i think exercise is benificial to everyone.i do try and get some fresh air,walks.the weather in the UK is freezing so can be restrictive at the best of times.
You have given me a useful insight.im truely grateful
Take care too
Xx
Their are three options, transplant, Parotoneal dialysis and Hemodialysis. I personally like the options Parotoneal dialysis has some advantage of more variety in the diet, you save your veins and see the Dr. Once a month after training. Hemodialysis allows you to swim, bicycle ride. I like to walk my dog it keeps me healthy. You should talk to a diation the can guide you.
Hi loisduncan
I also heard about PD dialysis.its something I'll ask about at my appointment.i understand a tube is put in via the abdomen.im just wondering how it will all work.sounds like it gives you more flexibility.iv heard you can do it during the night?I'm not much of a swimmer so this could be the one.its good you have your walks.fresh air is great..i will ask about diet.top of my list..
I hope your first appointment goes well! They will likely share information on treatment options, which can be a bit overwhelming. Here's some information you can read more about in your own time: kidney.org/atoz/content/cho...
or if you prefer to learn by videos: youtube.com/playlist?list=P...
Thank you Kellic for your kind response..iv looked into the links you forwarded.most helpful.its given me an idea of what to ask and expect.alot if useful info.
Wow. Those are great resources. Thank you for the links.
PD Dialysis - Week 5 - Training Day 4
How to reduce and calm muscle cramps of CKD Hemodialysis patient
Transplant evaluation appointment 
