Hi and welcome,

I can't address your exact situation as I'm not yet close to dialysis. However, I can address one of your comments. It is never too late to find a caring and supportive nephrologist. Staying with the same one after you feel they bungled your treatment previously will only be detrimental to your mental health. Change now. Look at the side effects of every type of dialysis and how it will affect you with your current employment. An informed choice is the one you select after doing all due diligence and research. Not knowing your work or work schedule I would suggest that in that decision-making process you speak privately to your HR department and your supervisor(s) about your needs with each method you seriously consider and then make your final choice. Have you informed your other physicians about your status and gotten their input? Keeping all members of your care team informed (including your husband and other significant family members) is very critical at this point.

Whatever you decide, this site has lots of knowledgeable people who have been where you are and will share their stories with you. Best of luck.

I am so sorry that you are having problems.

I am CKD 3.

Creatine 1.3

GFR 53.

My PCP believes that NSAIDS are the cause of my CKD.

It’s easy to tell someone not to worry. Trust me, I have my days. But I have hypertension and stress is bad for our kidneys.

Can you tell us a little about your medical diagnosis. What was your GFR at the time of diagnosis? Do you have other medical concerns?

Did they have you on a renal diet?

This is a large forum and I am sure there are several other people who have gone through this.

I have seen two different nephrologists and both were not concerned because of my level.

We have all been there.

My PCP is great and has been more proactive in treating me.

Do you mind sharing?

Hello! I've been doing PD for 10.5 months now and went into kidney failure Nov. 2017. I needed a chest stint for hemodialysis for the first two months before switching to PD full time (which was awful btw, do not recommend it). I was born with my kidney disease, so having to go through a process that had basically loomed at the back of my mind was terrifying. There's a grieving process that beeds to take place, and leaning on your support system is a need; even if you want to withdraw. There were plenty of nights where my boyfriend would get a call from me hyperventilating and crying, and he would show up with my favorite snacks and just hold me all night while I rambled about nothing and watched movies that he had no interest in to make me feel better. I went from a full time, independent college student who lived 2 hours away on a college campus and worked, to needing help with literally everything at home in a matter of weeks. It's scary being so helpless and needing to rely on so many people for basic things (i.e, dressing, showers, walking places, cooking...you get it), and my boyfriend just kept telling me that things would get better and would make a point to say "hey, I'm really proud of you, you know that?" And praised whenever I did something by myself. It becomes about the little things and now I'm (mostly) back to my old self. I'm back to school (online) and can do about 90% of what I used to.

Now, for PD, it's a wonderful option! You are trained in both manual exchanges (3-4x a day), which you are required to do for a period of time before you can "upgrade" to using a cycler at night, with a possible exchange during the day. You keep manual bags on hand though in case of power outages, infection, cycler break down, etc. It's definitely something to get used to, but with planning and help, you can travel and have less strict dietary and fluid requirements/restrictions. You do have to keep up on cleaning your bathroom and bedroom weekly to minimize infection, but once you're trained life on PD isn't too different from regular CKD life, as long as you keep your levels in check, take your meds and follow your treatment plan.

I hope this helps to give you peace of mind! Transitioning to PD can be super smooth and easy as long as you stay on top of it! If you have any questions or need a friend, feel free to shoot a message! Good luck and please keep us posted!

I encourage you to actively explore getting a transplant. Find a living donor within your family and/or your circle of friends and get transplanted as soon as possible. Preemptive transplant is not a cure but has more advantages then dialysis. I was a preemptive transplant getting a kidney from my brother 31 years ago and I have never looked back. By the way my brother is doing well. Start by talking to your Nephrologist and find out where the nearest transplant hospital is. Give them a call.

I am not sure if I saw whether or not you are in the USA. If you are, file immediately a FMLA document. dol.gov/whd/fmla/ This will protect you for a while from being fired or discriminated upon. They are only good for 12 months but it does not have to be consecutive months. I filed one when I was working to protect me. The way the doctor wrote it was for use anytime I need a day or two off and there was no time limit on it.

Hi! I am in the same boat as you. Actually, I’m probably closer to dialysis than you are. I like my nephrologist ok. I wish he would think more outside the box. He’s just very conventional. I like to try different things that I think will help. I am on transplant list over a year now. I call transplant coordinator, he’s never there. I leave messages, he never returns my calls. And to top it off, there are so many conflicting stories out there on what to eat, what not to eat. I was using an app to track potassium and phosphorus. They discontinued it. Asked doctor was there another one I could use. He didn’t know if one. I asked if there was anything I could do to lower bun and creatinine, he said”no, you’re already beating the odds” I thought to myself, what kind of answer is that? Then I read stories of people on dialysis. Some people have great results, others have horrible results. I’m not sure what to expect which makes me anxious. Anxiety makes my bp go up. Then I just have to stop, try to think positive thoughts and pray for help dealing with all this. I will include you in my prayers. With God, all things are possible😀

Hi Nikki,

Now you have a consultant who you are happy with it should be less scary.

At my unit in Derby they have a very caring and totally supportive attitude, talks with my consultant are a discussion of what I want given the information and not what a medic may suggest.

As part of this process ciders patients begin talks with the team about 18 months before they may have to start dialysis.

As part of this process I give a talk about my experiences from initial clinic meeting and regular checks and then through CAPD and now into HD and now nocturnal HHD, I give this talk several times a year and cad patients have found this helpful as do the consultants. I have recently been asked by the dietician to talk about my “diet”

It is all very scary at first as this is a life threatening disease but can be managed really well if you work with your renal team.

I have an excellent renal nurse who has been really supportive especially in the early stages. If I have a problem when starting my dialysis a phone call and he is at my home within an hour, how good is that?

I am 71 and still work full time in a demanding job and enjoy life to the full.

The hardest part was going away on holiday with my kit for the first time, if planned well in advance it works great. We are planning a holiday to Oz next year to see our new granddaughter, support is so good in organising this.

I am presenting The British Kidney Federation conference this weekend in Blackpool, my renal journey, a patient experience.

I wish you well as you progress, the secret is to have a positive attitude and I am sure all we be good.

Best wishes

Hi Nikki, I am stage 5, gfr 9 %, still working and going through many health problems. It seems I spend more time at dr. appts. testing etc. than I do at work these days. I am holding off on dialysis, although I feel pretty bad most of the time now. The fatigue and inability to get things done that I never use to give a second thought to. I work on my diet, a bit of exercise, plenty of water, I have not started dialysis but visited the clinic that I will be going to and my nephrologist is the director there. I agree it is all overwhelming and I wish I had some great words of wisdom. Use your support. I don't have any but I am trying to get some in place. Take Care and God Bless !

Have either of you, Nikki and Frankie, thought about Home Hemo-Dialysis? The reason I'm asking is that it is the method I'm seriously looking at should I need to begin dialysis. What I've read so far is that if your doctor gives the okay, and using the buttonhole technique you would be able to dialyze more frequently and you wouldn't need a partner. By doing this at your schedule it seems that you can dialyze more often at home and at the times convenient for your schedule, including travel if needed or wanted. There is no reliance on a center for the time slot that works for you and your work. The recovery time with more frequent dialysis is so much better than in-center dialysis, and I've spoken to a few on PD and they felt much better after they switched to HHD. Just a thought. If you want more information send me a PM and I'll give you what information I have.

The only thing scaring me about Home Hemo is the needle. I hate needles and the idea of giving my self one....Ugh...I just think I could do it!

Pardon my guess here, but I'm going to go out on a limb and guess that you have pierced ears. If I'm correct then you are familiar with the process. You can put on your earings by either looking in the mirror or doing it "blind." The buttonhole technique is similar only you can look right at the point and insert the needle right through the tunnel. There is no traditional needle stick like is done when blood is drawn for labs, etc.

I'm not affiliated with anyone or organization involving HHD but I've done my research and should the day come when I have to have dialysis that is the method I am leaning towards. Here is the link that may help you understand the process.

kidney.org/atoz/content/but...

Rather than being mad about the disease, why don't you research it and find out what dialysis is really about. I'm going on my 8th year being on dialysis and have no complaints. Sure, I've had a lot of problems with my access (fistula) but I work through it and take one day at a time. Over the years, I have had over 30 surgeries to correct my fistula or HD catheter; problems happen, accept it now. I don't understand why you would want PD. There are laws protecting dialysis patients no matter how demanding your job is.

I suggest you research dialysis, there are hundreds of books and online resources available. If your husband really loves you, he will go through this with you. Lean on the ones who love you, you are going to need the support.

Hi, I am the same as you in that I am at stage 5. I was not diagnosed until late stage 4 (with 17%) left about three years ago. I too am looking to do PD initially and continue to work. I work with computers for an international company so it is quite possible for me to work from home and I have done for the last two years but since June this year when my eGFR went down to 12% and I just felt too sick to work. Like you I am mad about it all so I can relate to what you are going through. All the best and stay in touch.

Don’t be scared... i just started dialysis and i feel so much better!!! I was ckd 5 for awhile and by the time i got to the hospital felt like the walking dead. It’s a matter of perspective!! It’s not that bad... i had formed an opinion based on two of my friends who unfortunately are just negative people. If you have the right mindset it is freeing. I’m not saying it’s a cakewalk or that I’m ok with it but that’s the hand i was dealt. You can do this!! If you want to know more Or have questions please don’t hesitate to ask!! Gods got you

I can understand how you might feel. I'm far from end stage yet but I still have CKD and did not even know it. Some how it seems that the Doctors don't take it very serious. At least not till one gets to the end stages. I was told not to worry about the eGFR. And recently I dropped to a 53 eGFR. I was able to get it back up to a 65 eGFR but I got a call from my Doctors office telling me that my eGFR is normal yet a part of my medical Dx is renal insufficiency. How can a stage 2 CKD be normal?? Obviously I have had active kidney disease and and once there's damage that much of your kidneys are gone. Diet helps to get the kidneys back to and higher level of functioning provided the problem is caught early enough. I have SLE and it likes to do kidney damage. SLE has been active in my lungs, with my skin, I have neurological issues because of SLE and I've often wondered why it spared my kidneys. Well guess what, it was messing with my kidneys too. I thank my Heavenly Father that it's not been to bad with my kidneys. It can get that bad though. My prayers are with you and I wish you the best.

I too am now stage 5 end stage acute renal failure..

Pre dialysis..

I have a GFR of 12 and very high creatine about 4 ..

I am also very scared of the unknown of dialysis..

It's normal to be scared..

I realize now being a kidney failure patient myself we're afraid of the unknown..

I found with kidney failure ( which I'm still learning about) so many things change in your life.

Your energy level, your diet, your anxiety level, sleep patterns, and waiting for all the lab results.. always..

Just to see what the kidney function is doing..

There are times depression sets in and t times you have strength for the day..

It's seems to be a roller coaster ride most of the time..

Oh..

And the sleepless nights because of getting up to go to the bathroom all the time..

I also am new to kidney failure..

I got my kidney disease from a staphylococcus infection from a tattoo in September of 2017 ..

I had 97 percent function in August of 2017 ..

Now I'm at 12 percent..

The medication therapy I know is hard..

Chemotherapy and mass doses of Prednisone..

And nausea..

Please hang in there..

I know you are scared..

This support group is great.

We are here for you..

We're all here to cope, learn to have a better quality of life with all we endure having kidney disease..

We're family in an uphill climb..

Being scared is o.k...

But know..

You're alive..

And you will be able to fight this battle .

When I first got diagnosed in stage 4.

I was sick, devastated and depressed..

Thanks to this support group I now feel even being in end stage kidney failure it will be o.k..

I know in the state of Pennsylvania, stage 4 kidney failure is a permanent disability..

Check in your state..

Hang in there..

It will get better..

I know..

Someone in this group told me there is a finish line..

She's there after a difficult battle ..

She told me she would wait at the finish line for me until I get there..

I'm still in the race there..

She told me she would greet me with a hug at the finish line..

I believe her..

That's my goal right now..

That finish line to greet her and tell her I made it..

I will wait for you to give you that big hug to..

If you need me ..

I'm here for you..

You'll make it..

God Bless you and keep fighting..

It will be worth it..

I am also Pre Dialysis...62 y/o Female....GFR 20 .Creatine 2.6....I was diagnosed 18 years ago with CKD...it has been a slow progress but now that I have entered Stage 4 and looking at "Options" I am also scard and mad and sad and happy too that there are "Options"...My Nephologist thinks I am a good candidate for Peritoneal Dialysis....but also wants e to go on a transplant list...which I am hesitant about....I think I will try the Peritoneal...and see how things are....

Hello....how was the surgery ?...I like the idea of doing Dialysis on myself in my own home...My Nephologist had the Transplant Team contact and I had an appointment for Dec 17th to be assessed....I cancelled it....From what I have read about Transplant it scares the heck out of me....I would rather try the PD Route and see how it goes, but I may change my mind.....How do you feel about Transplant ?

They just put in your PD Cath last Friday and you start PD on Monday...doesn't it need to heal for awhile first ?.....I dont know which scares me more....the PD or Transplant and all the anti-rejection drugs that are required...plus living on the "edge" waiting for a Kidney...I am very interested in following your post and seeing your view of doing the PD...I hope thats okay

Bless You Nikki.....You sound strong and I bet you will do well on PD....I wish I could hold your hand....so I will just hold you in my heart...

Hello Nikki....just wondering how you Dialysis treatments are going?....are you feeling good...were you able to stay on PD at home ?

So glad you are doing good....I am still not on dialysis...but feeling more effects if kidney disease....so awesome to hear from you....I often think of how your doing....how did you go across the country ?....

Well...gfr is 16..and I have an appt with Neph next week....but other than tired I feel good...although now I get nausea every so often....Do you feel better than you did before Dialysis ?...that is awesome you traveled all the way to California....did you have your solution delivered to your moms or did the airline allow you to bring it ?

That is so wonderful to hear !!....There is Life after Kidney Disease Diagnosis...I remember you were feeling quite poorly and your cath had wrapped itself around your tubes....I told my Neph your experience and that I wanted the cath now so that it would heal before dialysis....he wouldn't let me and promised it would have time to heal...how is the drain pain...has that subsided ?

Dang it...I was hoping it had subsided or at least was less...that's probably what I worry about the most

..

Yay !!...so glad to hear you are doing better...are you still working ?

I will probably contact you as I start this process...hope that's okay....I need all the support and ideas I can get..

Hi Nikki,

I sympathise and understand your angst.

I started PD 4 years ago and it was great for me. 4 times a day to carry out an exchange. If you are in the Uk your employer has to make reasonable adjustments to your work place/ conditions to accommodate your renal needs. I dialysed at work , had a small room next to to good hand washing facilities, hygiene is the singly most important issue with PD.

PD was good for me but I damaged my catheter, my silky mistake, leaked and had a nasty gamma negative infection, peritonitis, not much fun, after 6 bouts of peritonitis and a new PD tube in discussion with my renal team gave it up and went for HD. As I had to have an AV fistula formed I was without dialysis for 8 weeks. eGFR of 6 at the time, had a blood test every week to monitor and came through that while working full time in a busy demanding job. My renal team are helpful, totally supportive and magical.

Started HD which sounded scary at the time but soon adjusted. After two weeks at 3x4hrs a week I decided to go for Home HD, after another 4?weeks joined the home group and had a two week intensive training with my wife. The hospital arranged for my machine, nxstsge, to be installed at home for me. Started at home on a Monday morning, my dedicated renal nurse came each time for two weeks to ensure all ok. A little scary on our own at first, we did have teething problems but a call to my renal nurse usually sorted and if I needed him to come he was always on my doorstep within an hour at the most .

I did my dialysis at 7 in the morning 5 times a week for 3 hours and adjusted my working day with my employer. After a month I decided to move to nocturnal dialysis, had a training session in the hospital and then stated the next evening.

I get everything ready around 8pm, takes about half hour, I start dialysis soon after 10pm for 7.5 hrs, sleep for about 5hrs, get up, shower, breakfast and go to work as normal, I fact I feel normal whatever that is!!.

My bloods are great every month, I take my own bloods, spin, take to hospital and see the results on line within 12hours normally. If there is a problem my renal nurse will have seen the results and calls me immediately if we need to talk.

If I have a problem during the night I have a free phone number to nxstsge in the states and they are so friendly and helpful and will not go of the phone till sorted and if they cannot sort will guide you to come off to ring 999, this had never happened to me in 2 years.

I still work full time, walk 25 miles a week, brisk walking, have a large garden I maintain and love life, this awful disease will not best me or stop me from enjoying life.

I am taking my machine to Australia next year to see my new granddaughter.

I give talks to potential patients in my local hospital , starts about 18 months before they may be starting some form of dialysis. I have presented at conference the patients experience of dialysis in all its forms.

I have and planned in September to give live dialysis to potential patients in a hospital setting. Giving something back to our wonderful NHS is so satisfying and I cannot think them enough.

As a nocturnal dialysis patient I have around 27 hours of dialysis a week with a blood volume clearance of approx 360 litres a week which is almost as good as a transplant. So now I have choices, dialyse nocturnally which is great or still go for a transplant which has many unknown risks . I have been for 2, but after hours in the hospital, at one of them gowned and ready to go, did not go ahead as the organs could not recovered in the time frame allowed.

This was an experience in itself, again our wonderful NHS.

Remain positive and live can be great and wonderful on dialysis

Best wishes Philp