Had my check up today . My nephrologist said my gfr is down to 11 percent . Even though I feel ok he think it best to start dialysis sooner than later he said you don’t want to wait til you feel really sick and shortness of breath . He said we need one more labs before we do he will give me to the second week of April . Since I’m feeling ok but if I start feeling bad I have to call him . I’m going to do pd dialysis . He said I will have to get a port . And train . He said right now they don’t have anyone training for home dialysis but there another place he work out of and he going to call them to set something up . My question if any of you can remember how long is the training for home dialysis is it one day one week . Will they guide you through it and watch you do it to make sure you are doing it right . I’m kind of overwhelmed and I admit a little depress I was really hoping I could hold out until after my daughter wedding in September my goal was to get a transplant before I start dialysis but it look like dialysis is going to happen first . Any advice anyone can give me is welcome .
Have to start dialysis soon: Had my check up... - Kidney Disease
Have to start dialysis soon
I don’t know, but this is a link to Kidney School where the free modules are listed:
WinJ3 thanks for the link
Hi Beachgirl, I understand you wanted to stay off dialysis as long as possible. I know there are some here who lived with a GFR of 8. I am not going to jump on dialysis until the very last chance I can. But I still would want to be prepared. The only suggestion I have is to maybe see if changing your diet will help. They told me 4 years ago I would be on dialysis in 6 months...... but I changed my diet and so far, things are holding at stage 4. Not sure what diet you are on or if you are, but believe me, when you get to dialysis, you will be on a diet.
Let me know if you want some ideas for diet.
Best to you.
How to get 2000 calories a day without going crazy on carbs or protein? Concentrated whale blubber diet? Lee Hull wouldn't like that. 
Thank you bassetmommer . My nephrologist thought I would of been on dialysis two years ago I had a nurse come out but I kept my function up so it didn’t happen . I know they say a plant diet is good . I really have been eliminating meat but maybe I need to go meat free. I have someone who want to be my donor but when she tested they said she didn’t match they actually told her I have high antibodies so I’m a hard match they told her that four other people tested for me but none match she was the only one that said she would do a pair exchange but when she took the glucose test it put her body in hypoglycemia because she has not had any sugar in years they told her she can test again in six month which would be august - September they told her that they sure she will pass it next time but they have to wait six months so I was hoping I could wait until then .
I would like any tips on diet do you think by chance if my gfr goes back up that I would be able to wait on dialysis . My kidney disease is polycystic kidney .
I also have PKD and just had a transplant. I definitely think diet helps. There was a point in time my function didn't budge at all for an entire year and for me that had never happened. My disease was a fast progressing form as I was in end stage at 35 years old. I believe I was able to hold it steady by limiting my protein to only 5 ounces a day. To make this easier, I switched to rice milk and cut out dairy. That's not necessary, I just prefer to cut out dairy than meat. I concentrated on chicken, beef and eggs for my main proteins. I mostly tried to eat salads, fruits and vegetables but I did have to eat carbs to fill up, like while grain bread. I think the limited protein helped the most, but I did also eat very low sodium, didn't eat fast food or processed food, didn't eat high potassium foods, and drank mostly just water and coffee with non dairy creamer. At the end of the day it's a chronic progressive disease so don't drive yourself crazy, but if you want to try I really do believe it gave me an extra year. Hope this helps!
Dear Beachgirl32,
one question...... are you Absolutely Certain, that you want, PD Dialysis- up to FOUR times a Day (at least three). No doubt you have 'heard' Stories, of Folk, Relaxing as the blood steadily Filtres.... yes I heard those too! Then I Spoke, to someone, actually Doing it. Endless 'Blockages', of the Perienial Tube, Many Hospital Visits, 'Endless' Infections (one person who nearly Died)..... I Opted for Hemo- Dialyis!
With Hemo-Dialsys you are in a Ward, trained 'Operative/ Nurses', attend you- yes 'things' Do 'go wrong'- with Fully Trained Staff On Hand....... Ok it IS a big Time Commitment, the Dialysis itself taking, close on, four and a half hours (including Connection/ Disconnection Time). This is THREE times a Week- either Monday, Wednesday and Friday or Tuesday Thursday and Saturday (no dialysis on Sunday, except perhaps at Christmas).
I was on Hemo for, almost exactly, Four years and yes, there certainly Are Problems... Machines 'breaking down', Transport issues (especially if you use 'their' buses) plus all manner of 'things' happening BUT these are Very Rare Indeed. Most times you go On, then Come Off, the Dialysis, without Incident.
If I sound like I'm trying to 'Push' you towards Hemo-Dialysis.... I AM. The choice, is of course, your own and if you, honestly befieve/ think, Peritoneal (I'm NOT sure that is spelled right) Dialysis is for you then I, really do, send you my
Very best wishes
AndrewT
Thank you for your comment Andrew I plan to do the cycler where you do Pd through the night my mom did this and my brother did do it but he drain really fast so he had to do it manually four times I have cousin and uncles who did hemo . some with problems some have problems with pd . I know how important it is to keep catheter clean not to get infection . I really don’t want to sit in a clinic doing it I want to take charge if something changes than I would do clinic my cousin did her hemo at home . With proper training I will feel good . I know first hand how well my mom did but it been awhile so I don’t recall everything but I even help her set up her machine at night but she been gone since 2006 so I know thing have changed .
Thanks again for your post
Good for you sticking with PD. I think it gives the patient much more freedom! In 6 yrs, on a cycler, I didn't have any blockages, infections, hospitalizations or problems. I believe the PD diet is more flexible than a HD diet.I was recently transplanted. I was very glad to get all of the supplies out of my house!
Mhusband27 glad yo hear you didn’t have any problems and congrats on getting a transplant
I’m so sorry to hear that but the great thing is in this time we have the medical treatments to resort to. Me myself I think about it a lot read about it a lot . I got pneumococcal septicemia and all my organs failed they in fact told my family I would probably not make it . It left me with congestive heart failure, heart attack , stents and kidney disease along with MCTD I’ve had another round of septicemia and small bowel blockage they removed about 2 feet dead small bowel now I have a horrific scar .. but I’m alive. I have PTSD from all that anyway like I said I thought about it if I do live long enough to need dialysis I’ve probably got no other option than hemo because of so many abdominal surgeries and lots scar tissues. My father in law did the PD it pretty much tied him to home he couldn’t really travel with all the paraphernalia the machine all the fluids etc. I think I would like to do home hemo dialysis if I had to choose and was able but the other side of the coin would be less worried about making a mistake and get infection or bp bottom out so I guess the clinic would have to be my only choice. But in clinic at least you could probably make some good friends and feel less isolated.I’m so sorry I cannot imagine the anxiety you must be feeling May God bless you and I will keep you in my prayers and let us know how everything goes ... all my best ..🍀
Thank you chimama I know it may be harder traveling but you can with pd my brother came here five years ago on pd from the west coast I’m in the east coast . I had call a center and they had all his boxes ready for him to do pd here he did manual and my mom took her cycle machine on an airplane in 2005 did her pd she had the center deliver boxes where she needed So my thought in 2022 travel should be easier . Both my mom and brother couldn’t do hemo cause the blood pressure would bottom out. My cousin tried pd but had to go on hemo cause she had a hernia . We will see if I can handle pd but if I can’t hemo an option .
Hi. I do PD. Been on it 28 months so feel free to reach out if I can help. It's actually really sensible to start PD sooner than later as unlike haemodialysis, PD will actually preserve your remaining kidney function for longer. I wish they'd of told me that before I was at 7%!
Thank you rabbit . Have you felt it has hinder your life style . Have you travel any since bring on pd . I hate to think of being on dialysis at my daughter wedding but it look like I may not have a choice. But what I read if you are on the machine it 10 to 12 hours does that seem to be true. My daughter is having a night time wedding . It jot until September so I’m hoping I will know how to use the machine well by then. She is five hours away so we would drive there putting my supply’s in car for two days . What can you definitely not eat on pd is another question .
Even if you are using the machine you can choose to do manuals while you are away. This gives you more flexibility. I have been away for long weekend breaks and done manuals in the hotel room. There's no duet restrictions specifically for being on PD. It's all about your blood results and everyone of us is different. I don't have any enforced restrictions and my potassium is always good.
I don't find it hinders my life, it's all about adjustment. I can't do impromptu things which is frustrating but as long as things are planned in advance then you can still lead a full life.
I am in UK so things are going to be different. Manual PD training here was 3 days and then a further 3 days if you wanted to learn how to use the overnight machine.
You want to be ready! My gentleman friend had a nephrologist who did not have him prepare ahead, and his kidneys failed on a trip to a friend’s wedding, resulting in a week of hospitalization away from home and another week soon after he was able to get home. I recommend the book “Help I Need Dialysis.” It will reassure you and probably reinforce your decision to do PD. Most nephrologists and kidney professionals choose PD and other forms of home dialysis for themselves.
Calimaribabe thank you and I will look into that book thank you for telling me about it
My PD training was about 2 weeks. In that time I learned manual and the cycled. It was pretty easy to learn. Home hemo training was 2 months and much more complicated. I was on PD for 4 years before I got an infection and had to switch to Hemo. PD was my preference. I felt better, diet was more flexible and I was even able to go in a cruise with no problem. I did home hemo for 2 years and hated every minute! The machine weighed 100lbs and it required much more supplies. I was unable to travel with all of that so I would arrange to have dialysis at different centers when I traveled. A cruise ship refused to let me board as a home hemo patient because they wanted me to have at least a years worth of experience before I traveled. I learned that a ship can refuse a passenger without even providing a reason. Insurance covered treatment in the US but in Europe I would have to pay out of pocket anywhere from $300 to 600 a treatment. I felt much better on PD and found it less intrusive. Hemo was physically exhausting whether at home or in center. Once I got on hemo I really started pursing a transplant. I thank God everyday. I wish you all the best. It is better to be prepared for treatment . I ended up in the emergency room when my egfr was around 5. There are no easy decisions with CKD.
2sday thank you for your input on doing both , my brother never had infection but my mom did so I know that can be painful . Have you gotten your transplant yet I’m doing everything I can to get one but being a hard match has put my sprit down but I won’t give up.
Hi 2sday: I am 78 yo. My GFR is 11. I want to wait little more but worried about going to ER for emergency dialysis if symptoms arises. I would appreciate if you Can please let me know how do they do the dialysis in ER. on emergency basis. In the mean time take care of yourself. God bless 🙏🙏🙏
Hi there! When my kidneys crashed and I ended up in the ER they go in through the groin at the top of your thigh.. They numb you with a few lidocaine injections before they put the line in your femoral vein. They usually remove it after treatment because it’s a difficult area to keep clean. You will have to lay down for the entire treatment and for some time after with a sandbag on the spot to make sure the bleeding has stopped completely before you get up. Once you know you are going to do hemodialysis, I think it’s best to have the procedure to get a permanent access. Your permanent access needs time to heal to be ready for treatment. I know it’s tough to do. I resisted for a long time.
Yes. I have my transplant! I think the most helpful thing is to educate people about kidney disease. People want to help you. I followed many of the suggestion in the book “Shift Your Fate” by Risa Simon. I was also a hard match because I had a previous transplant. I formed a committee of friends that helped publicized that o needed a kidney and handled inquiries. I had several people test to be donors and finally had a donor ready when out of the blue a kidney became available from the list! Hang in there! Stay as healthy as you can. If that means you have to start PD, I would do that and continue my search for a kidney. You should certainly be on the list by now so all your pretransplant testing is current. You gotta work and pray for that kidney, but you can do it!
2sday thank you glad you got your transplant and yes I been on the list keeping everything current praying one day it will happen
Thank you for sharing your story. It is so very encouraging. I went for a PD tour today and it really hit me like a ton of bricks. I am down to 11 -13 gfr. Over the past few months I have held between those numbers. I have one kidney, lost one to cancer 20+ years ago. If I may ask, how does one publicize they need a kidney donor? I wouldn't know where to start. Being diabetic I am so scared that PD won't work for me. I am still in the learning phase. I am supposed to see the transplant team after I see nephrologist again this coming week and have been doing tests to meet some markers. No antibody tests done yet. I'm trying to learn what all the tests are that they will need for me to be a candidate. Being O=. blood type may mean I have to wait years for a kidney. 😥 SO much to learn and understand. Any info you can share with me about PD and kidney transplant would be SO greatly appreciated. Bless you!
Hello Highgfr sound like you are in the same place as I am . Yes everything can be scarcy . When I first went to the transplant eval I was doing pretty good I was there about half day doing test they did labs and stress test. And ekg and echo and ct scan I wasn’t on diaylis side I could not have the contrast because that would of made do dialysis but I was like 18 percent gfr then and I had to sit through a class then you meet with social worker a nurse a surgeon I had my ejection fraction came back to low so they said that low I couldn’t have a transplant but we didn’t know why they sent me to heart doctor and he put me on two meds they didn’t want to do a heart cath because I wasn’t on dialysis yet and my function still good but my ejection fraction was 25 percent Through medicine and excercise I got ejection fraction up to 66 percent so I did test again for transplant the only person I miss talking to was the renal dietician because he did not show up for my appointment. But finally last May I got the call you are approved for transplant .
I don’t Facebook but that a great way to let someone know you need a kidney . I don’t know if you are in the Us but you can check with your center if they do a mircosite. Site I will send you my page privately do you can look at it. I was told it was against the rule to post it so that why I will send private.
My brother is type O blood he only waited three years for a transplant he is in New Mexico it a shorter wait out there then the east coast where I am .
Wow. What great information. Thank YOU so very much. I wish and pray so hard I could get my gfr back up. Wish I knew more things to try. I was told yesterday that the medical field is extremely close to having an artificial kidney. Not one that is implanted but one that would sit outside he body and work like tour kidney. Weird I know, but hopefully is a viable option down the road for so many. How are you doing with your kidney and the meds you have to take? Tolerable?
Yeah my neph said it wouldn’t be ready for me the artificial kidney. It still has to go in clinical trial . I trying hard to get my gfr up but trying to come to term that I may need dialysis. I was bad at drinking soda I stop that I’m limit my protein not eating any red meat . I have heard from other that a plant base diet the way to go but I m not completely there.
I have not had transplant yet so I’m not on all the medicines yet. For my heart I still take carvedole and bidil
You are welcome to write or message me anytime
Hopefully both of us will have increase function but if not we can face a dialysis journey together
Yes... increased function. Amen! Thank you for being so gracious and for sharing your knowledge and experience with me and so many others. Hope you do well and fid out you have an increase in gfr. Anything is possible. God bless you! 🙏
Wow...a lot of good info here and lots to think about. My GFR is 22 in Mar and I have my next appt in Jun where based on how it keeps dropping I'll be at 20. The transplant center won't do the testing until 20 or below and I'd like to get started as soon as possible so I can continue to work. My nephrologist suggested PD and based on what I've read I'd rather do that. I have very small arms so the graft might be too difficult. I also don't really like the idea of 4 hours 3 times a week cause I'm sure after I'll be tired and it'll just be impossible to keep working. I will more than like end up on dialysis while waiting for a transplant so want the one least disruptive.
This is the book I read. I don’t think I used all of the strategies, Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients (Volume 1) amazon.com/dp/0578113635/re... I used many . You have to start the search for a donor by educating yourself and coming to terms with what’s happening. That’s the first step because then you have to start telling people what’s happening to you and what you need. I wasted so many years not telling peopple. Forming a committee of people as described in the book to assist you is extremely helpful. They can help write flyers or articles about you. Your committee can also help you think through ways to spread the word and direct potential donors on how to contact the transplant team. My cousin is a type 1 diabetic and did PD. It’s not difficult to do. You just have keep things clean and to adjust to it. Don’t deviate from the instructions you get from your training. Transplant matching is complicated. I’m sure your team will check you and any potential donors out thoroughly. I would focus on trying to get donors to test. The more people that test the greater your chances are to find a match. Some donor candidates start the process and get ruled out for health reasons or realize they really can’t go through with it. It’s disappointing, not everyone can be a donor. When that happens, move on. I am type O. Once you get the word that you're a good candidate, go get that kidney! May God bless you and everyone who has chronic kidney disease.
I can relate to your situation that I was GFr 11-12 when I went on a rare vacation with my family to Myrtle Beach. It was a waiting game to a stable lab report to see if I could go. FortunatelyI could, but as soon as I came back I started training on the manual and cycler dialysis at Fresenius. I learned quickly with 3 half-day sessions, a training nurse visit at home, a few calls to my nurse and the on-call nurse, I felt confident. With your help with family, you will ace it faster. Good luck and have a great wedding?
Tissybell thanks for your reply Hoping I will learn it all quickly yeah I keep saying maybe after this or that then I will do dialysis but I will listen to my doctor if he said in April I need to do it then I will do it .
Hi Beachgirl32, training for me was 2 short days and one or two follow up home visits afterwards, they will talk you through the process of PD, at first it looks complicated but you’ll be surprised how easy you will pick it up and you could do it with you’re eyes closed.
It wasn’t until I actually started dialysis that I accepted that I had kidney disease, I spent many years in denial! So looking back, for me starting dialysis was a step in the right direction mentally as well as physically. In saying that starting dialysis is when it all started to get and feel real. Starting dialysis was very overwhelming but I guess being in denial for a long time contributed to that as I spent a long time burying my head in the sand with it then it was all wham bam and everything was happening so fast. There was good days and bad days that came with dialysis but when I look back I adjusted to it pretty quickly and it just fell into my daily routine.
Please let me know how you’re journey with PD is going and if you have any questions along the way let me know 
Thank you for reply . I was all set to start . But last doctor visit he ask how I was feeling and I was feeling really good. I think me walking help with me feeling good. He said my labs didn’t change like he thought they would . He said He didn’t think I need to start dialysis yet. But if I start feeling sick or weaker to call him asap . So I get to go to my grandson graduation not on dialysis. Plus I would like to be in dialysis a little bit before I make a trip . I’m pretty sure I will be on it by my daughter wedding in September the dress I pick out I made sure if I had my port them you couldn’t see so I’m accepting it. How long were you on dialysis I assume by your name you have got a transplant so I may be right or wrong. Still praying that transplant will come for me but I know it will in gods time not my. Doing all I can to stay healthy .
They held me off starting dialysis too until I really needed to start. I started dialysis when I was on 6% and that was July 2021, and here we are April 2022 and I’ve had a transplant.
Have you had your tenckhoff tube inserted ready?
You will get there and I know that’s easy for me to say now, for years I had nurses doctors and so on telling me I’d get there but you really will.
Any questions about PD dialysis or my journey will it all just pop me a message
I'm on PD DIALYSIS and have been since July. The training was 2 weeks and my home nurse was and is still great. Walks me through everything and Kris me calm cause I have horrible anxiety. If you want feel free to inbox me.
thank you glad all is working out for you
The training for pf is 2 weeks and they are great!! They work with you until they feel you completely understand everything and can do it in your own. So if you need liner then the 2 weeks...I'm sure they'll give that to you. I'm doing that and I'm very comfortable with them in home nurses I have and the help they give me. Are you on the transplant list?? And how long have you been on it if you don't mind me asking? If you'd like... You can message me. And I hope I've helped some.
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