Ok, some of you folks who have gone before me, tell me again what symptoms I should be seeing at stage 5 to know it's "time" to start dialysis. I've been waiting for these symptoms to show up for months and I still feel ok, doing pretty much whatever I want to do (within reason for my age-69). I see my neph again early June to review new labs I'll do just before. My last eGFR was 7.6. Potassium was 3.9, Sodium 140, Phosphorus 4.7, Bun 69, Creatine 7.6.
Stage 5 symptoms just before dialysis begins - Kidney Disease
Stage 5 symptoms just before dialysis begins
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RonZone
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To be perfectly honest in hindsight I wish I had of started dialysis earlier. I left it till the last minute and my eGFR was 7%. With respect you think you feel OK because our bodies are clever at hiding symptoms and keeping us going as long as possible. My advice would be to start dialysis as soon as you can. See what the nephrologist thinks.
So did you feel THAT much better once you started dialysis at "7"? I actually don't feel that bad most days. Some days are better than others, but most days are ok. Course, my job is sitting at a computer all day, so it's not like I'm digging ditches or anything, or running marathons, but I can do "normal" stuff pretty well like cutting grass, putting down mulch, etc etc. I just don't want it to hit me one day like a ton of bricks out of the blue, like throwing up and all that stuff I've heard some talk about. I was just wondering if I could make it through the summer before starting it in the fall or early winter, say November or something like that. I'll see what my numbers are in June and that might make my decision for me.
Feeling better for me wasn't instantly after starting dialysis. Some symptoms like the metallic taste and and my skin colour improved within a couple of weeks or less but other things like energy levels took a few more weeks to improve. I still get the odd rough day. Everyone is different as you know. Once I was down to about 11% I was being sick often and was actually collapsing occasionally on the train home from work. The doctor told me it was time to start dialysis but I kept putting it off. I was scared. I was only 52 years old. In fact I had the catheter surgery the day after my 52nd birthday. Anyway sounds like you are doing really well.
Ahh, I've not had any metallic taste or sickness or anything like that. Not sure about skin color, I've always been a tad pale with these darned freckles that came from my English/Irish Heritage 
I'll have to ask some people "do I look weird?" and see what they say, other than the usual snide comments from my cousins which I will ignore ;-). I'm not actually scared of dialysis. I've had a couple of years to get used to the idea. I just haven't felt that I actually needed it up till now. We'll see how it goes over the summer. To be honest, I thought I would be on dialysis a year and a half ago based on the "numbers". I'm sure my doc would probably recommend I start now, so I'll see what he says in June and if any symptoms start appearing. But yeah, doing ok for now.
Oh and I did get my visit to the UK in last fall, I'm very happy to say. That was a WONDERFUL trip, though too short. And I was fearful I wouldn't pass my 2nd day covid test in Cambridge so I could come back! But I passed, so it was all good. I'll never forget the experience of driving a stick shift on the wrong side of the car on the wrong side of those tiny country roads where folks go WAY faster than I was comfortable driving, especially through all those roundabouts! I was happy when I got behind one of those huge carts pulled by those huge tractors hauling produce or whatever down the road with 30 cars lined up behind them. I could go slower then, which made me happy.
Yes people drive like idiots round those lanes. Had a near miss this morning when a truck was thundering towards me round a blind bend. Pleased to hear you enjoyed your vacation.
Yeah, it was a GREAT vacation. I had it planned for April 2020, but Covid cancelled the flight when everything shut down. Fearing I would start dialysis before I could go, I really thought my trip never would happen, but low and behold, I was able to book a flight last October and away I went! I visited all three "Fordham" communities (my last name). Enjoyed each and every one of them, and as a bonus got to Stonehenge for a short visit. Wonderful people everywhere. Really wish I could go back for extended trip one day. Will have to see how travel with PD goes on short trips first, lugging that machine around.
You could probably do the PD manually but you’d still need to bring an iv pole unless you could rent one someplace there. You’d also need to lug your dialysate (sp?) bags.
I travel some internationally for work. I’ve been expecting to be thrown onto PD for nearly five years when my GFR suddenly plummeted from stage 3b to 8. So, I began researching to see what I could learn about travel with PD.
I founds some information (don’t ask me to find it again now) posted by a salesperson who travelled a lot. He was on PD. Here are a few of the ways he handled PD while on the road:
1. In a car he would run exchanges while hanging the PD solution bag using a hook and the hooks above the back doors.
2. In hotels he hung his pd solution bag either over the bathroom door with a wreath hanger he carried with him or he hung the bag on the robe hook on the back of the bathroom door.
He didn’t want to lug the cycler with especially when flying. He had pictures of these options in his post. I remember thinking that this might be just the ticket for me. They’ll ship your solution to the hotel for you. I’d only need a carry-on bag large enough for my connecting cords etc.
He also talked about scheduling flights so he had ground time for exchanges etc.
I’m still nit on dialysis so haven’t tried any of these ideas myself yet. However, I do expect to figure out how to travel when the time comes. I’ve been to the UK and would LOVE to go back! I’ve got relatives from both England and Scotland. Although, I am turning 69 this summer. I’m on a transplant waitlist so am place-bound until I receive a donor kidney and recover; that is hoping I’m fortunate enough to receive a kidney.
Jayhawker
Thanks for posting this. Makes living with PD a lot more doable reading what others have been able to do. That guy sounds like a real trailblazer. I bet if he were a pilot he would figure out how to do PD while flying! I assume he had to take very real precautions in those environments to prevent infection. Looking at my car, not sure it would qualify Ha! Would need a bit of cleaning before doing a road trip PD exchange I'm afraid.
Yes, the hand washing etc would be much better in a hotel room etc. I’ve definitely seen quite a few posts where people talk about doing PD exchanges in their cars though. Not sure I’d try that. But a hotel room with the hook system or the IV-like poke for manual exchanges is doable and keeps one from dragging a cycler along on trips.
Jayhawker
Apart from the excessive gradual tiredness once I went downwards from 10 EGFR I started to vomit in the mornings , That was really my only symptoms fatigue & sickness in the mornings , I had my transplant at 5-6 EGFR , no dialysis but almost
Yeah, I've heard others talk about being sick. So far I've not experienced that, so I guess I have that to look forward to. I'm so busy, it's hard to find the time to be fatigued. I assume that one day it will hit and hit hard and I'll have to slow down. But till then......Hey, glad you got that transplant before dialysis. I pray that continues to go well for you!
Hi RonZoneI'm in the same situation as yourself. GFR at 9% and I feel fine, well I did before I got my iron infusion. No symptoms, probably the best I have felt in 10 years. It worries me that this, is the calm before the storm and I will suddenly collapse etc. On Wednesday my consultant advised I go on dialysis sooner than later. I am now looking to start dialysis in a months time. The actual dialysis doesn't scare me, it the inconvenience of it all and working too. However it is to keep me alive, so cant grumble. My husband is currently being tested as a possible live donor. Wishing you all the best.
Hey, we are definitely in the same boat. I probably should be starting PD in a month or so, it's difficult to know what to do since I feel fine. I may see if I can get through the summer and a couple more trips to the beach first! Not sure if that will be possible, but I can give it a try. Do keep me posted on how you are feeling as you go into doing dialysis, and just how inconvenient it actually will be while working (I'm still working as well-though I work from home on a computer all day, so it's not like I'm not sitting here anyway. Your work situation might be way more complicated).
I will RonZone. Wishing you all the best.
Morning, When I was in that position, I had a general cognitive decline, brain fog almost all the time, it felt like when you know your car needs servicing, everything seems blunted. I was freezing cold all of the time, even days when it was 28 degrees in UK summertime. I was hell trying to work in a air conditioned office. Once dialysis started I was fine, no longer cold, felt a lot better, to use the analogy again, feels like I have had the car serviced.
I think the trick with Dialysis is to try and use it to learn something. I was watch to program whilst i wiled away the hours, that alongside getting an hours kip
Hope this helps.
Hey, that helps a lot. I've not experienced the brain fog yet (well those I work with might disagree, I'll have to ask them I definitely can related to being cold. So once you started dialysis, you're not cold anymore? That will definitely be a nice perk. (I'm really trying to focus on the positive aspects of dialysis as much as I can, and I have no doubt I have a ton to learn!)
So I guess I'll just plod along here until I see my "check engine" light come on and I know it's time for that service appt to start dialysis.
Hi Ron, I would say I am colder than I was, prior to renal failure I very rarely wore a coat unless it was mega cold. once I was on dialysis, I became much warmer. Although not as warm as I once was. I lacked energy, commuting to and from work was a rough journey.Three years post transplant, I was defo one of the lucky ones.
Thanks for the response. I'm definitely looking forward to shedding a layer or so once I start dialysis. I feel like a turtle. Some days I just go out in the hot sun and sit to warm up before coming back inside to work again. I am fortunate that my "commute" to work is going from my bedroom to the kitchen, then to my little home office in the morning. I used to commute to work, so I understand how that works. The whole pandemic "working from home" thing has actually been a blessing for me and my company is allowing me to continue to work from home post pandemic, so I can add that to my blessings to count each day. Great on your transplant! I pray you get years and years out of it.
Aside of creatinine, your numbers seems not very bad. If you feel ok why you should start dialysis? Maybe be ready in case of emergency is highly recommended but really I don't see that urgency. Egfr is an estimation based on average. We all are single and unique. All the best
It seems my eGFR being 7.6 is the "bad" number. Based on the scale used by my neph, 15 is where a lot of people start dialysis he said, though I'm hearing others on this site who started at 6 and even 5.
RodZone, well, I am at 11 GFR and more foggy brain and weak, fatigued. My doc said that I need to start dialysis ASAP. So I am getting the PD catheter Tuesday and starting in a month. He said the longer I wait the harder on the kidneys to save any part of their function and to feel better. So I say do not put it off any longer. I would meet with your doc ASAP and pick a date for surgery as the recovery time is 1-2 weeks, but hemo surgery recovery can be 3-4 months recovery. I did not want to wear out my kidneys and my heart and rest of my body so I chose dialysis now. I listen now more closely to my body. By the way, my doc told me they have no way to test the toxicity levels in your body, so how you physically feel does make a difference but do not wait too long. You do not want to be close to death and heart failure and get dialysis. All the best. This is a tough road to go. Blessings, BB
Hey, you know, I had not thought about the effects on my heart. That is definitely something to consider. I have an appt with my heart doc Mid may, so I'll get more info on that from him. Thanks for reminding me of that consideration. I wish all these docs would talk with each other, but alas, they do not. They seem to operate (pun intended) in their own little domain and stay there. I would ask, why is it important to retain any remaining kidney function if I'm going to be on dialysis anyway? Will my natural kidneys perform some function at the beginning of dialysis that I will need?
Ron are you considering transplant? In Mar my eGFR was 22, getting new results tomorrow and if below 20 I'm asking to be seen at the transplant center. I'd prefer to skip dialysis and just get a transplant.
Not sure yet. At my age, I hear that the average "life" of a deceased donor transplant is around 5 years, and PD also is around 5 years, so I may either just do PD for 5 years then "phase out" or do PD for 4 years and then see if a transplant is available for another 2-5 years, then "phase out". I'm actually good with either option. I guess it will all depend on how I feel as I travel down the PD path. And where I'm located, getting a transplant without being on dialysis is very uncommon, unfortunately You probably are in a better location for that option. My doc hasn't even mentioned it.
HI Ron. Thank you for sharing this info. I am in similar situation GFR 10, creatinine 5.5, stage 5. I am 78 yo. I am doing OK for 78 yo. But my Nephro wants PD catheter installed ASAP. I do not know why. My potassium, sodium and phosphorus is in the middle of the scale. BUN is 48. I think with my present condition I will be able to keep dialysis off by one year, but the nephro comments make me nervous that I may end up in ER. This anxiety further effects my kidneys.
Can someone please tell me what are the consequences of ending up in ER for dialysis. How they do it. Recovery time etc.
kind regards and wish you stay off dialysis for long time. 🙏🙏🙏🙏🙏
Hey, thanks for the well wishes. I also don't want to end up in the "ER" for dialysis. I think what they do is put a catheter in your chest and you do dialysis that way until they get you fixed up for another method. Not sure of the recovery time. Those who have gone through that procedure would have to chime up on that. You might want to just ask if anyone on here has been through that process. The chest version takes more monitoring from what I understand so you have to stay in the hospital longer I think, which insurance companies and medicare does not like. They want you to do the regular stuff to keep you out of the hospital. And I've ready that neph's make a lot more money on dialysis patients than they do pre-dialysis patients, thus the rush to get folks started earlier. I'm sure avoiding the ER is one reason, but there are other reasons that come in to play based on what others have experienced on this site. It's like anything else. They specialize in dialysis, so they're going to push folks toward that cause that's the world they live in and feel comfortable in. I don't think they like us folks who live "on the edge" as you and I are choosing to do, kicking the can as far down the road as possible. Like you, I keep my potassium, and phosphorus and sodium between the lines of the road as much as possible so I don't end up in the ditch (ER). I'm REALLY hoping to put dialysis off until the end of the summer, but I'll base that decision on what my hard doc says mid may (based on what Aloha49 noted) and my neph says early June, and how I feel this month and next. Sure do appreciate your response!
The problem of waiting too long means one may be immediately whisked to the hospital and put on emergency hemodialysis. This generally involves putting in a "temporary" catheter (often a chest cath) to access the blood to clear the body of toxins. The reason for my hubby's hospitalization was exceptionally high blood pressure (240s/120s) that occurred seemingly overnight. The only way to bring it down was to perform dialysis. He did not have his peritoneal catheter in place (that one takes a few weeks to heal), so he later had more procedures done to transition to that method. Waiting too long forces a person into additional steps and hospitalizations that could have been avoided by being proactive. It's wise to put one's type of dialysis and access of choice (cath, fistula, etc.) in place even if one doesn't need to use it for a while. It keeps one out of the hospital, avoids multiple transitions in processes and procedures at the dialysis center, significantly reduces one's downtime as well as one's expense and worry. If one does it right, one shouldn't have any overnights at a hospital.
Darlenia, did they ever figure out what caused your husband's blood pressure to skyrocket like that overnight, thus creating the emergency situation? Was it CKD related or some other cause? I guess that could happen to any of us, so I just was wondering what might lead to such an event happening.
Our primary doctor was stunned because everything was on a really good trajectory. The nephrologist, on the other hand, simply shrugged and said, "Sometimes kidneys just quit like that." So some take time, others go fast. My own explanation is that my hubby's diabetes (type 2) succeeded in stiffening and scrubbing out the last few blood vessels inside his kidneys involved in filtering out fluids and toxins. With nowhere to go, waste built up throughout his body quickly driving up his blood pressure. I sense that most people that have this happen actually die of strokes and heart attacks; the leading cause of all deaths. Many simply don't make it to dialysis in time in my humble opinion. So it's good to keep an eye on swelling, to watch the trajectory of the labs, and to take your own blood pressure daily if you're at Stage 4 or 5 in kidney disease. Just my thoughts. May you live long and well!
Hey, thanks for all that info. That's way good info to know. I see my heart doc today, so I will go in with this information and have new questions for him!
Please let me know if my thoughts are way off base. Thanks so much!
Ok, I had put this in the wrong "reply" field, so putting it here in the correct place now: You're thoughts were right on target according to my heart doc that I just saw. I'm fortunate that I do not have diabetes and so far BP is ok and no swelling etc. My heart doc didn't have any input as to whether I needed to start dialysis or not, he said check with my neph on that, but so far nothing is showing red flags as far as my heart was concerned and no huge changes in my labs, so my kidney disease is a slow progressive type of thing (PKD) and probably wouldn't trigger any quick response type issues he said. But to let him know if I feel my BP is acting up.
Thank you! I just wanted to make sure my opinions weren't "far out" and misleading. Diabetes is stealthy and evil. Things went upside down quickly for us. Yours will almost certainly be more gradual with the PKD condition you inherited. So, with a bit of good decision making on your part, we'll be looking forward to enjoying your posts for a very long time! Stay as well as possible! Thanks again.
The thing about kidney failure is it is usually very gradual decline...so we get "use to" how we feel...but your other organs dont...Dialysis will be the most effective if you have enough kidney function to pee...as when we stop peeing is when we get into big trouble...Starting Dialysis earlier will help you retain that part of kidney function longer and the Dialysis can work on the toxins..I felt better almost immediately...even though I never thought I felt bad....But everyone has to do it their own way...I started at 12 gfr because I was worried about the damage to my other organs..I was terrified to start..but then I become more terrified not to start
Hi Ron Zone - I received a deceased donor kidney without going on dialysis. My major complaints were severely itching skin (due to high phosphorus) and tiredness…I was anemic. I had a couple of iron injections that were marvelous. Also, I could hardly finish a meal. I worked full time up to my transplant … mostly at a computer (like you) but with some travel to conferences. I went through the dialysis training so I’d be ready when my doctor said it was time but he never did. My GRF was 9; creatinine was 5; and BUN was 92 a day before transplant. Do you know where you are on the list?
Hey Denise, that's great that you received a donor kidney without having to go through dialysis first. I'm learning more and more folks saying they've been able to do that. I had always heard that dialysis folks get way more priority than non-dialysis folks for kidney placement. And thanks for the giving the reality of life after transplant. I know it's not the walk in the park that the general public assumes. I visit my neph in early June, so we'll discuss transplant list then I assume. Still not sure that's the path I want to take at my age with everything else I have going on. I may just go the PD route then "phase out". Still undecided.
Congrats on your transplant! That is so wonderful. How are you feeling and are the immnunosuppresent meds hard to take. I had my first appt with transplant doctor yesterday and start lot's of testing this week to see if I can be put on the list. My gfr is 11-13. Lot's of protein leakage. I was so scared before the meeting but so many in this forum have shared so much of their experiences it really, truly does help to read them all. Thank you so much.
Hi Highgfr - The transplant was definitely the right decision for me. May 7th was my 8 year anniversary and I feel very good. My GFR for labs this week was 82.5; creatinine was 0.84, and only my tx kidney is working. It took me about 3-4 months post-transplant to really start feeling better, since the surgery is quite major. No itchy skin, energy level is high, limited diet restrictions (no grapefruit, pomegranate or sushi) . Regarding the tx meds, you will need to report any issues to your doctors, as some side affects are dose related and they may be able to adjust. Doses are typically higher the first 6 months after tx than they are later on. You may also take antivirals and antibiotics at first too. Again, report any issues. I amsure you read other posts, but staying out of sun and using sunscreen is a must with the meds. I wish you the very best. Please keep us up to date.
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