Hello everyone I was extremely sick in June and diarrhea bought down my gfr to 8 percent I thought here we go dialysis time cause I was so weak . I got dehydrated from the virus I had I been drinking water like crazy . I was able to bring my gfr back to 10.1 and started to feel good again no uremia build up . I still feel good at gfr of 10 I know some don’t I read an article that the Based on these studies, a new position statement from the UK 9 says dialysis needs to start with a GFR of 6. It can start sooner if there are symptoms of uremia. People at high risk (with diabetes or heart disease) may also want to start sooner. And, there are steps you can take to boost your chances of feeling well as long as possible.
I not going to wait til 6 I know my brother did . How many of you started this low and how did you feel.
My daughter wedding in September the end I’m woukd love to not be on dialysis then . I try the plant base that didn’t work for me my doctor said I needed protein so I’m eatin it in in moderation. I would love to stay m gfr where it is or increase it any tips .
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Beachgirl32
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In my opinion you are better off starting dialysis sooner rather than later. Wish I had of done. I stupidly kept putting it off eventually starting at 7%. Feeling much better now. Should have listened to the doc when he said start at 11%
Hi there, I was at 6% last year, very tired but wanted to wait as long as I could. Out of the blue came the call in August, so very lucky. I have a new kidney working well, but the surgeon did say it came just in time. If you feel well keep going. All the best, I will keep my fingers crossed for you
That's so awesome! Congratulations saturday6!!! WOW! 👏👏 I am in the same boat. My gfr dropped to 11-13 and has been there for about 9 months now. 5 weeks ago my nephrologist told me to come back to my late August appt with the port in my arm. I just got approved at Mayo for transplant and my sweet husband starts being tested as a live donor now. That will take 4-5- weeks for everything. Which will take me to the August appt and dr wants the port in.
I am feeling good with the exception of some tiredness but am walking, trying to eat much better, more vegan very little meat, etc. Mayo had me take 8 vaccines in a weeks time including the Covid shot and they really took a hit on me. SO tired and all kinds of side effects. I go for the 2nd Covid shot next Monday and am dreading it. But they will not do transplant surgery if you don't have the Covid vaccine.
Should I ask my nephrologist to give me more time...I do not want to do dialysis before the transplant. My husband is the same blood type as me and if our antibodies are too far off Mayo now has a swap program so they can give my husbands kidney to another patient and I will get a kidney of equal or better condition and maybe even younger, that matches me better.
Thanks for any advice you can share. Were you feeling ok up to transplant time and did your dr want you to be ready for dialysis and not wait?
Also..how are you doing with all the immuno-suppresant meds? Any problems...well tolerated? What are your restrictions?
Thank you SO very much!! And again...CONGRATULATIONS!!! ❤️
I know you ask Saturday6 but I know my cousin. Went to Mayo got her kidney but it never wanted to wait up later they said it wasn’t a great kidney but she got another one in 8 weeks. She has ab blood and not high antibodies like me so she she had more choices . But she said Mayo work so well with her nephrologist so maybe they can with your august is not that far away ask if you can get it in September never hurts to ask
HI Beachgirl32.....So glad for your cousin!!!! Hope it works out like that for me too! Saw vascular surgeon today and he said it would better to be on the safe side to have the fistula done to avoid emergencies and God forbid the new kidney has any issues( if it all works out and I get to do transplant.) SO... we are going to schedule for sometime is August. Praying so hard to have date for transplant before then but placing it all in the Lord's hands.
Hope you continue to do well and feel good! That is wonderful!! ❤️ God bless!!
Hi Beachgirl. I started dialysis 6 weeks ago. My GFR was at 6%. Apart from feeling a bit tired I felt fine. I was determined not to go on dialysis. Then one day, I woke up and felt awful. Luckily I had an appointment with my consultant the next day. I went limping into hus office like a wounded animal and told him to do what he has to do. Six weeks on do I feel any better? I dont feel full of energy but I don't feel worse. I have had a lot of issues regarding clotting and my fistula is still young. It has been a rollercoaster ride regarding emotions and my physical wellbeing. Im not seeing it myself but a lot of people are saying I'm looking a lot better. I have colour about me. I was also severely anaemic which was not treated until i was in dialysis. I am going to be straight with you. You will be on dialysis soon, so there is no point in fighting it. Yes its an inconvenience etc but u NEED it. The sooner u can get your head around that, the better. I always saw it as the enemy but its keeping me alive and you too when you start. I know you don't want to hear it but please start before you are admitted as a medical emergency. Im based in Scotland. Wishing you all the best x
Thanks for your reply I know I will be starting dialysis. But if I am feeling good t is hard for me to say let start. I have been preparing my room for it I will do pd at home. I bought a cart and some other stuff. My doctor is watching me closely . We agree when I go under 10 I will start. When it went to 8 I was extremely sick with a virus. I do understand how it can be a roller coaster ride. I just talk to my brother and he said he probably should of started before 6 percent , I know my nephrologist will not let me get that low. I was just wondering how many people do. I thank you for being honest with me.
I did great on PD. I did it 1.7 months. I let nothing stop and did pd bags gravity is easier on your body. A pain to stop and go do pd 4 x a day but I looked at it like going to the bathroom. You do what you have to do. No diet changes no water restrictions. I now have a transplant ( living donor) have had a harder time on transplant than pd however I would do it again for the freedom in my schedule. I tried the overnight. It was the worse decision ever then moved to gravity bags was able to travel and felt great most all the time.
My GFR just recently dropped from 10 to 6, I have another lab in 2 weeks and I'm praying it went back up (or at least not any lower). My doctor did discuss starting dialysis at my last appointment, but I decided to wait because I was still feeling good. I was like you feeling great up until recently. I've noticed a lot more swelling in my legs, ankles & feet even when being up for a short time. Also have been a lot more tired with more aches & pains, trouble sleeping sometimes. I see her again in 2 weeks and I know I will need to get started with Dialysis, it's scary and I really don't want to, but I know it will help me.
So glad you are doing better. Thanks for sharing. Can you tell me what kind of dialysis you went on? And how it is going? What are your days like when you do dialysis? Do you get sick from it? I am in the same boat you are and I’m trying to hold off. I’ve been approved for a transplant but I’m trying to see if The living donor passes all health tests. Sure would appreciate your sharing and any advice you can give. I am so scared to have to start dialysis. Thanks again… God bless.
Hi HighgfrI am doing haemodialysis x 3 week for 4 hours.
I only felt a bit sick a couple of times. Its more a dizzy feeling but that passed very quickly. Usually got that the first hour of dialysis. As my fistula is only about 7 weeks old I have had issues with clotting, so they have only put one line in until 2 weeks ago. They are also using bigger needles on me now. Which improves the dialysis. Also i found out I was severely anaemic so I have been getting an iron infusion every Tuesday. That knocked me for six the following day. However i am starting to feel better for it. I dont have loads of energy but my stamina has definitely improved. The past week everyone is commenting how much better I look and I finally have some colour to my face 😳😳. The actual dialysis is bearable but extremely boring. You need to stop watching the clock, if you start!! I would say its the mental part that is the most difficult. Trying to fit it in around work is a nightmare. Its like having a second job due to the commitment. Plus I find myself sitting there wondering how my life got to this stage 🙄🙄. I hated the thought of dialysis. I was convinced it was a sign that I had failed to sort out my health. But you know what, its like every part of the kidney journey, you just have to get on with it. Try and develop coping strategies etc. My husband is also being tested as a live donation. Hope that was of some help to you!! All the best.
Thank you SO very much for sharing. You are such a trooper. Your positive attitude is so evident and youur strength .
Can I ask how you take care of your port. Where did you have them place it and why?
Did having the port put in hurt?
How do you take care of it before, during and after dialysis. Is it hard to live with everyday...like, is it in the way, have to be real careful, can yo hurt the port, can dialysis hurt the port, etc.
I am so sorry to ask all this but my husband and I are tying to wrap our heads around this because my dr wants me to have the port put in by my next appt with him. I'm so nervous. Thank you, thank you, thank you!
I got my fistula put into my arm. I think they would rather put fustulas in your wrist area, however when my wrist was scanned, it was not suitable. I believe this is quite common, if you are female. Mine was done under a local anaesthetic by a surgeon. It took about 2 hours. It was done in an operating theatre. Your arm is numb for about 2-3 hours after op. I was ok after about 1 hour. It is not painful more uncomfortable. The most difficult part was finding a comfortable sleeping position. I was told not to drive for 2 weeks and you will be limited regarding lifting heavy items. The scar is about 2 inches long. You can hardly see it now. If you gently press your arm you can feel the "thrill" pulsating through the fistula plus you can actually feel the fistula. It just feels like a small bit of piping 🤣🤣. I have to admit I sometimes forget I have it. I just keep doing what I used to do regarding showering etc. You have to be careful when you first get it done. If bathing or showering u have to not get the dressing wet. I imagine if you have a chest/neck port it would be very different. I believe you actually have permanent tubes hanging out. Im sure someone with more knowledge would advise. Im just going by what I have seen at the dialysis unit. Its OK to feel nervous about getting a fistula. However 6 weeks later, it really is nothing to worry about and looking at my arm, you wouldn't know i have had anything done. Sorry if im rambling 🤣🤣🤣. Ask anything you want. This is what I love about this site. You are getting advice or info from people who have experienced it. Knowledge is power!!! Stay safe my friend and try not to worry!!!
Hi Ziggydoodah!! WOW. You have really been through it ! We are hoping it all goes well when it's time to do this. Thank you for being so willing to share...it helps to understand so much better.
What was wrong with your wrist when they scanned it? Hope it's nothing serious. Where is it on your arm? Just tying to wrap my head around the fistula /port. Geez!!!! I've read about so many risks it just takes my breath away.
The first day they used the fistula/port did it hurt? Did they do it right at the center and could you handle it? Do the nurses watch you closely and help quickly if needed? Friends tell my I can do hemo at home but so scared we will mess up. Do you feel the center is better?
Can you swim? Play sports? Dance? Restrictions?
Thank you again for your time... hope it's not too many questions. Please feel free to ramble all you want.... it is all a blessing. 😃 Praying it all works out perfectly for you and your husband so he can give you a kidney. When will you know?
They never explained why my wrist was not suitable. I get the impression its because as a female your wrists are usually slimmer? With hindsight though im glad I didn't get it there. I have it in the inside of arm at the elbow area. I wont lie, yes it did hurt getting the needles in. Because my fistula was new, there was an issue with clotting and bruising. So I only got one line put in, instead of two. This continued for 4 weeks. They gave me anti clotting medication but it still happened. I am now on week 7 of dialysis and yesterday I got given a buttonhole needle instead of the sharp ones. Its like if you get your ears pierced. They are trying to make a permanent "passageway" in your arm. It definitely wasn't as painful as before, just uncomfortable. I take a stress ball in with me and squeeze on that with my other hand 🤣🤣🤣. The thing I like about the dialysis unit is that once my session is over, then thats it. I just get my coat and leave!! I did have a moment when I suddenly felt very dizzy and faint. I lifted my hand to get a nurses attention. I didnt even have to open my mouth. She ran over, put the chair in the reclining position and put an oxygen mask on me. Felt better after 10 mins. They have seen it all before. The staff are friendly and helpful but you do start to realise the good ones. I have one called Jennifer and she is great. Since I was diagnosed 7 years ago, I have met loads of medical professionals. Hand on heart she is the first one I trust 100%. I even told her that yesterday. Regarding restrictions, the only thing I would say to watch is lifting heavy items!! Obviously u will be cautious after your fistula is fitted but after a while you forget about it. We are looking after a dog for our friend. Just back from his 3rd walk today!! Even 2 weeks ago I would have been exhausted but im away to clean the kitchen now 🤣🤣🤣. Before dialysis I said i was fine apart from feeling tired. However i am starting to realise i wasn't fine. I am not full of energy but my stamina has increased. I am starting to get colour to my cheeks. I am also taking pride in my appearance again. I have to admit some days it took so much effort just to get dressed. I know i have a long journey ahead of me but I do feel I have turned a corner. Yes you are facing a difficult time regarding dialysis but you will deal with it. Hopefully I will hear soon if my husband is suitable. Not holding out much hope but as im feeling OK just now, im just enjoying life 😁😁😁
My husband started dialysis in June. His GFR was somewhere between 6-8. He also has anemia which causes him to feel without energy, fast heartbeat at times, and all the rest that goes along with anemia.His doctor said it's a fine line deciding when to start dialysis. You don't want to start it too soon because that can cause problems. But you also don't want to wait too long and end up having emergency dialysis.
The Wedding isnt until September...if you start PD now and start getting the protien you need now you will most likely enjoy the Wedding more. I do the automatic cycler at night when I sleep and I love it !...makes my life so much more normal..I forget many times that I am even a dialysis pt...I also didnt want to walk around all day full of solution.. I started dialysis at 11 gfr..although I thought i felt pretty good...but after a few months on dialysis I realized how bad I had actually felt...Kidney Disease is tricky because it's so gradual that you dont realize how bad you actually feel...you will also do better on dialysis if you have some residual kidney function for Urine output ..Whatever you decide is ultimately up to you....Enjoy the Wedding !!
Congrats on doing so well with PD. That's absolutely wonderful!! I hope it's ok to ask you some questions. In the past 2 months I'm trying to gain as much info and input as possible.
Can I ask you, what is the automatic cycler? Does it make PD easier to do or make it more safe. I am diabetic so when I eventually have to choose dialysis I was leaning towards hemo but the fistula, port etc., is so scary.
Do you have a hard time with the PD process, or infections? Does it hurt or make you sick and is the tube in the way each day? Bathing? Swimming?
Do you handle it yourself or does someone help you each day? What's the secret to making it work so well for you? You sound amazing and so positive!!
Bless you and thank you SO much for anything you can share. Sure so appreciate it. ❤️
The Automatic Cycler while I sleep..(.I use the Amia from Baxter )..is very simple to use...It is programmed to fill...dwell ..drain as you need while you sleep...I am programmed to do 4 cycles that take about 8 hours to complete..yours may be more or less...I do my own treatments by myself....and I visit my Clinic to get labs drawn..and to Visit with my Neph once a month...Some people have what they call Drain Pain and I did at first but my PD Nurse programmed my Cycler to Tidal Wave and very rarely do I feel that anymore..
PD does require a place to keep alot of supplies...and your Nephologist will decide if it is the best treatment for you....Abdominal Surgeries Scarring can complicate..
After you have the Catheter in place...(a small tube placed in your tummy) they dont recommend you swim anymore with some exceptions for Private Pools because of bacteria...but once healed you can Shower with some Guidelines and baths are pretty much a no no...
I feel good on PD and I am careful to follow the Guidelines my PD Nurse has trained me on about hand hygiene and clean spots to clean your exit site and set up your Cycle...mostly just common sense practices...but there is always a high risk for infection with PD so it must always be a top priority to you..
I feel good on PD and after I unhook in the morning the rest of my day belongs to me...I like not being full if Solution all day as Manuel requires.. .I have never flown since I began 16 months ago , but I have traveled by car for 5 to 6 days at a time and taking my Cycler and supplies has not seemed to be much disruption..I have also went on camping trips with my Camper...as long as you have Electricity and a clean surface you can do PD anywhere.....If I can answer anymore questions for you, please ask..Wishing the best for you
Hi RhenDutchess123....SO happy for you that everything has fallen into place and you are doing so well with PD. Congratulations. 👍. And thank you for being so gracious to not only answer questions but also share your experience.
You said an interesting term...drain pain. What is that?? What causes it?
How do you handle things if you have to get up during the night or walk though the house for something?
And if you had to describe what actual PD feels like when it starts till the finish, how would you describe it as it goes in and is removed?
My husband is curious about what you do with the catheter that comes out of the abdominal wall. Do you tape it. How do you hide it? Does it get in the way and can you hurt it in day to day activities? Was it hard to get used to it?
You seem to have made the adjustment so well....here's hoping I can do the same. Got to stay positive and put it all in the Lord's hands. Got to give Him this fear. Thank you for understanding❤️
Drain Pain is when the Catheter is removing the fluid...towards the end of tge drain , the Cathether...which is suction, can be trying to get every last drop and sometimes it "pinches the peritoneal wall and can be painful...My PD Nurse set the program on the Cycker to "Tidal Wave"...that leaves just a bit of fluid so not so painful...
When the Catheter is filling up your belly with Solution sometimes it can make you feel bloated but as the dwell cycle begins it seems to ease..After the first fill...which is warmed by the Cycler..it makes me sleepy and I just go to sleep ...I actually sleep very well..
As far as my Cathater...I keep it taped down to my skin when not in use...You need to be careful not to let it get tugged, as that can cause sores that can get infected...You also will learn how to clean your exit site during training...do it exactly how they tell you and do it daily...that is a must !!..zthe Cathater is very thin and tucks nicely under your clothing...
I hope you will be able to attend your Husbands training with him...as if he is to the point of needing Dialysis his brain is probably foggy...I am so glad my Husband attended because alot I would forget and he would remind me...probably the biggest step to my success was my Husband knowing all the steps...
Peritoneal Dialysis required you to store alot of supplies in your home...so you need to start thinking about where you will keep all this...and your husband will have a weight lifting restriction of 20 pounds so you may need to help him get his supplies ready...alot of the bags are heavy...so you might want to buy a small dolly to help you move things..
Wishing the best for both of you..
Keep us posted on both your Kidney Journey..So excited to hear how much better he is feeling after starting Dialysis...
You have answered so many questions and please know we are so very appreciative and grateful. Will keep updated as we go and thank you for being such a resource. YOU should write a book. So many people would benefit from it. God bless you and keep on doing well. Keep that positive and uplifiting outlook!!!❤️
A..thankyou...this is a great Site..alot of people answered my questions before I started Dialysis ...I hope I have helped and never hesitate if I can answer a question you have...I hope you have an excellent Clinic and PD Nurses like I have ...that truly makes such a difference...Life is Good
My hubby used a PD belt for his catheter, taping it down caused skin irritation for him. Some also use a PD lanyard to secure the catheter while in the shower. My hubby didn't like that at all and simply let it dangle. You can find PD belts and lanyards online including on Amazon.
I had a problem with tape at first...but my Nurse gave me a roll of Blue Tape made by 3M that didnt irritate at all...I could never wear that belt ...it moved around too much...but everyone is different on how they secure their Catheter..just gotta try and find what works for you
Hi, I am at the same point in my ckd journey as you. I’m trying hard to stay healthy because I know that something as simple as a cold or stomach bug could push me into dialysis and I’m hoping to go directly to transplant. How much time have you accrued on the transplant center waitlist?
That been my hope to get transplant before dialysis but I’m a hard match my daughter doesn’t even match I have high Andy they said . I first tried in 2019 for transplant list but my ejection faction was to low but it came up they thought I had a virus that affected the heart I was finally put on transplant list may 2021Good luck to you hopefully you will get a transplant soon.
Thanks! I hope you get your transplant soon as well❤️I’ve got 3 years accrued time but I won’t become active until I complete my cardiac testing-an echocardiogram is my last hurdle and hoping I pass and nothing else pops up!
How do you know you have high antibodies? Did they test that when you entered the transplant center with the initial testing? I’ve never been told what my antibody level is.
What is accrued time? I have been a patient of a renal Dept for 3.5 years, no treatment given apart from bp pills. Now threatened with dialysis AV only but nobody has brought forward any transplant conversation.I will be a hard match as I am a Universal Doner.
Accrued time means I got accepted as a transplant patient at the transplant center But will not become active Meaning I cannot get a call for a kidney until I get all the testing done. I had to have cardiac testing done, chest x-ray etc. and I put a lot of it off due to Covid lockdowns. But as far as the list goes, I’m getting closer but even if I’m next in line I won’t get called until I become officially active.
In the US, as soon as you go below 20 you qualify for a transplant. I believe I brought up the discussion with my nephrologist at the time. Have you made your wish is to have a transplant known?
I last saw my Neph on 1.Dec.2021. I am seeing him in 10 days time. Not exactly often or regular. I had bloods done in May only when I demanded them. I saw 2 Renal nurses about 3 weeks ago who really were not much help as they had not read any of my notes and offered me PD or AV. I know I cannot have PD as have had major abdominal surgery in the past. They offered me cookery lessons! to make dialysis food and where will I get the energy? (yes, on my own-they didn't have that either. They tried to get me moved to another dialysis centre 3 times further away with 4 times the journey time!!! But they didn't know that either. No mental health backing. No dietician. No Vascular surgeon. Yes, I did tell them that nobody had even mentioned transplant and that they didn't even know my blood group. (Another problem that they do not know about). Just me on my own going further down hill daily. Signed my DNR though. Peed off.
So sorry you’re going through all of this! To be honest I have been the advocate for my own health for quite a while. I’ve had times when my nephrologist doesn’t get back to me for five or more days through the portal and calling the office is even worse because it just goes through a general switchboard. That’s why support groups like health unlocked are so helpful! No we’re not doctors but it’s comforting to know others have been down this road and have survive the journey. Frustrating when you can’t get the help you need. It creates a feeling of unimportance and helplessness.You cannot let these feelings takeover! You have a right to live. You have a right to be evaluated for a transplant. Life is worth fighting for. Don’t give up.
Hily sorry you are having a hard time like Jamie we all need to be our own advocate . I know I didn’t get on the waitlist right away I was like jamok I had to pass all test I didn’t pass one of the heart one but I did a couple year later and got on the waitlist . You say you see the doctor in 10 days write down now all your questions and tell the doctor I have questions I need answer before my appointment is over . I always bring my daughter in law with me to my appointment so if there something I forget she may remember or something I don’t understand she can help so if you have someone bring them with you. You said you are a hard match because you are a universal donor does that mean you have o blood type ? I know o can only only match with o blood for a kidney . But lots of people with o blood has gotten a transplant . I am a hard match cause of high antibodies but I’m not letting that make me think it will never happen . I look at your profile seen you are in the uk I don’t know if there different from the US getting a transplant maybe someone on here from the uk can give you points how to get on the transplant list .
Yes, I am O rh Neg. Means other people get them before you do as those spare parts suit all others! In the USA 75% of all Rh Neg die before getting a match. I have not found the UK figures.
Hily I been told by transplant center negative or postive doesn’t matter I’m a negative they said for me the person can be a negative or postive or o negative or o postive for you it can only be o blood but for a transplant you can get o postive or negative the things factor doesn’t matter and my brother living proof he got his transplant 12 almost 13 years ago he is o negative and the person was o positive and he been doing greatI don’t know where that research came from 75 percent of the negative due before a match but you can write that question down and ask your doctor cause I know here in the us there a class we had to take and one if the thing we learn rh factor doesn’t matter. I don’t know if that give you little hope that you can get either o postive or negative for a transplant . My brother was only on transplant list 3 years when he got his. Hugs to you.
Sorry Elizabeth I dont have any information or advice regarding stem cells. Maybe start a new topic for this. There are a lot of very knowledgeable people on this site. Im sure someone will have information regarding it. Im sorry the plant based diet hasn't worked. I really wish i had been aware of this when I was first diagnosed. Does he eat a lot of gluten or carbohydrates? I only ask as when I cut out gluten my gfr went up 6% . Just a thought? I hope you find some answers x
Hey, think I'll throw my two cents worth in here again. You and I talked before about how long we need to postpone pd. I have postponed it for 2.5 years and was able to go on a Family research trip to England last fall with eGFR of 11, and then on a snow ski trip in early February with eGFR of 8.5, and just recently a beach trip with eGFR of 5.8. So I got those checked off my bucket list. I simply do not feel to bad even at 5.8 except for the occasional day when I just felt I had no energy and was a bit "off". But as Rhen said, timing is a bit important, so I've decided to get my PD catheter put in place the 18th of this month, then start PD in August, so I'll be well on my way to getting it down pat by the time the holidays arrive and can hopefully do dialysis "on the road" wherever I want to go. That's the plan anyway. BUT as everyone on this forum knows, plans tend to get changed when it comes to medical issues. PD might not work for some reason (only God knows for sure), and I may have to switch to HDD. I won't know until I board the PD train. So was it taking a chance, by letting my eGFR get so low before starting. Sure. But I was able to get those things off my bucket list because I waited. So it was worth it. Could I still have done them on PD. Possibly, but I didn't want to take the chance. Now my little events are NOTHING compared to you daughter's wedding. If I had missed my last beach trip, it would've made me sad for a day or two, but no big deal. If you miss your daughter's wedding because your eGFR suddenly drops like a rock, you would NOT be happy. Now will attending the wedding be more of a challenge will doing dialysis. Absolutely. It will take some major scheduling on your part and on the part of your family, and others will have to do some of the things you would normally like to do. You would need to let go of some of those tasks. But if your eGFR get's down to 4 by then, you possibly won't feel up to doing much of anything other than attending. And if you are having what I call one of my "road kill" days, when you just don't feel good, you will remember the wedding as if you were in a fog. So this is a VERY hard call. To be honest, if this were my decision, I would work hard with diet and being as healthy as possible (never overdoing anything on a given day) and getting lots of sleep, and see if I could postpone till after the wedding since it's just two months away, realizing I would have to let others do things I would want to do. And ask my doc to do labs every two weeks just to make sure I was keeping my eGFR up. And I would wear a double mask everywhere and wash my hands all day long to prevent getting virus germs and limit exposure to the public. But that's just me. I'm bull headed that way. So are you willing to do all of that to help keep your eGFR up? And have your dialysis surgery planned for immediately after the wedding, so you're healed up before the holidays. Sometimes our will can see us through. BUT with this option, you are just going to have to be prepared, as I was, to wake up one day and say "I need to go to the ER and have an emergency cath put in" and deal with it if that happens. So you weigh all this out, based on what your brother is saying, and what your heart is telling you. But only YOU can make this decision! That's the big takeaway from all this. You get to decide. Just accept and be ok with the outcome of your decision, either way. Let us know what you decide! If your heart is there, you will enjoy the wedding no matter which decision you make or what your situation is that day! And your daughter will know and feel it. It's your love and support for her that's important that day, not all the other stuff.
Ron thanks for your comment . Good luck to you on your pd I hope it all work out for you. Wow 5.8 does seem low for gfr glad you were still feeling ok with that . If I can stay 10 percent for the wedding I will wait but if my gfr drops I will start pd . There seem to be so much Covid going around right now I’m being super careful , I’m wearing mask whenever I go and if we go out to eat I try to pick a place we can eat outside. I know some say I haven’t seen you in church right now I’m only doing my Sunday school class they are only six to eight people in there and we are out before church start to many people in church my pastor understand and he even said my health is what important. One thing you mention I do have to watch overdoing things I do have that problem so I been working on it. Let me know how your pd goes .
oh thank you all for your posts here. They have helped me a lot. I had a transplant 27 years ago and I have been in chronic failure over the last few years. My gfr is at 11 now. I am anaemic and having monthly epo injections. I improved when I started these but the fatigue is kicking in again. I have been worrying so much about dialysis. When I was on haemodialysis in 1994 it was in a store room in a hospital! But reading your posts makes me less scared. Hopefully I might get another while. Thank you xxx
wow Dolzeroz your transplant kidney has last really long that is great to hear . I’m sure a lot has change since you had your transplant wow dialysis in a store room look at things now . Glad you are less scarce but I’m sure you can teach us a lot . I’m still holding on at 10 gfr I feel pretty good I think that my walking and me taking care of my yard helps that . I do get to go to my daughter wedding on the 24 not on dialysis when I started this post I was sure I would be on dialysis before the wedding . Glad I don’t have to carry all stuff with me since my husband now has to use a walker it takes up most of our trunk so glad I don’t have dialysis boxes to bring. Good luck to you do you think you would go the hemodialysis again or do the pd when time comes?
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