Posted , 10 users are following.
I am at end stage 5 sitting at a 9% function.
On the 22nd December I had a "missed call"
sinse that day I've started to really struggle mentally.
I feel guilty I don't spend enough time with my young famy due to constant feeling of tiredness.
I work full time and seem to feel guilty as I use all my energy up at work.
Please tell me I'm not alone in these thoughts/feeling I'm having
0 likes, 30 replies
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mikewordman bryan1973
Posted
Hi Bryan, I'm sorry to hear about your struggles. For those of us who have lived through a reduction in kidney function down to 9% and beyond, we can all relate to the fatigue and other symptoms you are experiencing. I'm wondering if you could clarify "missed call"? And are you planning on having surgery for dialysis? At 9% you certainly qualify.
bryan1973 mikewordman
Posted
Hi mike. The QE in Birmingham class a missed call as when your called for transplant but the organ can't be us d for what ever reason.
Im not on dialysis yet, as I had a PD catheter fitted in may last year but it was fitted wrong and doesn't work.
They are talking about putting lines in my chest to let me have hemo, but that scares me.
Ive always been a proud man but living with renal failure has never botereded me, always had a positive attitude but since December ive just started to have a different attitude as I've now realised it's ruining my life, think this is made worse as I have two young girls
badger_47080 bryan1973
Posted
Bryan, how old are you? Don't give up! I hope you have a nephrologist who can advise you. See about getting a new kidney..i don't know how you feel but i went through it with my mom..she was in the same boat as you. Unfortunately she was 75 and too old to get a new kidney.
Have you looked into it?
bryan1973 badger_47080
Posted
Hi. I'm over 40,I'm on the deceased waiting list, that's what a missed call is, I was called for transplant but the organs was deemed unusable for one reason or another.
Pepasan bryan1973
Posted
john85166 bryan1973
Posted
Yeah Bryan its very frustrating. I'm on 11-12 gfr so I know how you feel. There are some people on this forum that are really inspiring and put you in the right mind frame. Some say when you start dialysis you feel better. I haven't started it yet.
Meanwhile its one big challenge
stephen_25073 bryan1973
Posted
Bryan
First let me say you're not alone and I know exactly how you feel. Have you been on dialysis long? Are you on the transplant list?
I was working when I started dialysis but had to leave my job for the same reasons you are feeling. I also have Chrons disease too so a double whammy for me! I don't know where you live but in Scotland I got help with some benefits which didn't make up for my monthly salary but it did help financially.
On the assumption you go to hospital for haemo dialysis? I found speaking to my nurses helped enormously too and was astonished at how much they knew beyond their remit e.g. who to call for benefit guidance and also organised other people to talk to me too. Chaplains used to do ward visits which for me was nice but not very comforting but I knew they meant well. I guess what I'm saying is don't feel like you're on your own Bryan. There's always a good support network around and the fact you have a family too is a blessing and you should make sure your family fully understand the impact having dialysis has on you mentally and physically.
I no longer need dialysis as I had a transplant 3 months ago but DO feel assured, you are not alone.
Wishing you all the very best Bryan. Take care and feel free to ask away if there's anything else
stephen_25073 bryan1973
Posted
Sorry Bryan I just noticed you haven't started dialysis yet. This WILL increase your strength after a couple of sessions. I would also get on the list for transplant right away too
Stephen
joel20393 bryan1973
Posted
Hi bryan. I'm not as far along as you but headed down that road. I have two young girls. I am depressed. Can i suggest you consider seeing a counsellor. I wouldn't have dreamed of seeing a "shrink" before this happened to me, but it's really helped.
I'm not always successful but i try to have the mindset that not that long ago I'd be dead soon. Now i have a chance to see my girls grow up and that's what I'm focussed on.
Best wishes and hang in there for the sake of your girls.
marj01201 bryan1973
Posted
Bryan,
I, too, am dealing with CKD with renal function fluctuating from eGFR of 9 to eGFR of 15. (I'm just rebounding from a kidney infection so it has dropped back into Stage V again. But overall it's at 14-15 eGFR--so very high Stage V or very low Stage IV.)
I have been dealing with very severe anemia since my kidneys were at Stage IIIB. My nephrologist is treating that with an iron medication that I take 3x a day and Procrit (EPO) injections as needed--about once a month for me at this point.)
I'm also taking a potassium binder and following a low potassium, low phosphorous, low sodium, and low fat diet. (I know--not a lot left to eat.)
I'm still working full time. I'm single and have no family left. So I'm dealing with this with some support from friends but no actual family support.
I am still working. I can definitely relate to how exhausted you feel after working. I'm pretty exhausted after working too. I've been fitting my daily diet xercise in throughout the day--walking 2 miles a day splitting it up to 1 mile mid morning and 1 mile late afternoon. I also do 30 minutes on my elliptical machine in the evening after dinner--although this is not at s high intensity.
So by 8 pm I'm pretty wiped out. I do my house cleaning and grocery shopping on the weekends when I'm not working. I just have to stay really organized and on schedule. I also have to do my best not to get sick--that really throws everything into a tailspin so to speak.
At first I was very depressed. I was also pretty anxious. As I developed ways to manage all of this the anxiety subsided. And learning more about dialysis has helped a lot with the depression. I've reached a point where I'm thsnkfulbthere is a form of dialysis I can do by myself at home, PD dialysis. It will also allow me to keep working which I'd really like to do as well.
So while I'm thankful to postpone dialysis as long as possible, I'm no longer balking at the idea of dialysis. I'm ready to give it my best and am hoping for the best. From others on this forum I'm convinced I'll feel better on PD dialysis. They also describe a fairly normal life on dialysis.
But I wanted to share a little with you about my father's experience with CKD. I never knew him when he didn't have CKD. He did exactly what his doctors told him to do. He lived long enough to raise three children, put us all through college, and welcome 4 grandchildren into the world.
He did take a nap every day when he got home from work. My mother would encourage us to play outside or quietly inside while dad took his nap. After he woke up we would have dinner. We then often played board games or ping pong with him until bed. By the way, we did our school homework while dad slept so we would be able to play board games and so forth as a family after dinner.
On the weekends we did things as a family. As we grew up this might include going to football or basketball games, etc. My father was a music teacher so we were very active in the community performing.
I have good memories of my childhood. I knew my father had a serious medical problem. But he approached it with a sense of calmness and a great sense of humor. He certainly taught me and my siblings to live in the moment and to enjoy the small things in life.
I would not trade him for anyone else as a father. He played such a major role in my development! I've no doubt that your girls will feel the same. So rather than focusing on what you aren't able to do, why not focus on what you can do? Build family traditions around your CKD. They will love you regardless. You haven't changed. You just have a chronic medical problem.
Marj
andymac61 marj01201
Posted
marj01201 andymac61
Posted
If you aren't presenting with anemia and are feeling well enough to eat fairly well it may be depression. I find that I x the coding daily really helps me. I feel a lot better after I exercise even though I'm not doing a super rigorous workout. It seems like it helps with circulation and definitely helps my mood.
Marj
andymac61 marj01201
Posted
bryan1973 marj01201
Posted
Thanks for you words of encouragement Marg.
I went for my weekly bloods today, and broke down in front of the nurse.
She was saying it natural to feel how I feel and that the renal team are amazed I've got through 12 months at stage 5 feeling positive.
My problem is I try and put a positive spin on everything I do but since having the missed call at Christmas it's really effected me. She suggested being referred to speak to someone but I'll see how I feel.
I'm not on dialysis yet(not sure how seeing as I work 60 hours a week on my feet) but I think my body is telling me I need it now.
But I do not want hemo but I have to have it as the catheter they fitted as a precaution last year doesn't work.
Whilst writing this I'm reflecting and think my feelings are all stemed from having a few bad experiences. And that if guilt. I need a kick up the back side and stop feeling sorry for myself
marj01201 andymac61
Posted
I'm sorry--my phone auto corrected. I meant to say that I find exercising daily really helps with both how I feel physically and emotionally. Even just walking every day really helps.
marj01201 bryan1973
Posted
Actually, I think it can be pretty difficult to deal with all of this; it's pretty overwhelming. I see my nephrologist this next week on Tuesday. We're supposed to discuss transplant eligibility testing.
I really don't know what I think about pursuing a transplant. It would be a deceased donor kidney for me too. I'm 65 years old this summer. I've told le myself that I need to take this one step at a time. So I will pursue the testing. But I honestly don't know what I'll decide to do if I find I do qualify for a transplant.
I just want to feel better. With no family left I find that I honestly don't really care how much longer I live. Instead I care much more about how I'm feeling and my overall quality of life.
My friends and I joke about this. We call it "the oddness" and talk about the oldness setting in as we reach this age🐶
I want to keep working--I'm a university professor. I'd like to do some more travel. (I was able to attend an international autism Congress in Scotland in September of 2016. It was a wonderful experience!)
So at my age do I go after the transplant and wait up to 3 years for a kidney and then another year to fully recover? Or do I start PD dialysis and keep working and traveling while on PD? I don't know. (Of course, I realize that I would be put on PD dialysis while waiting for a transplant.)
But the first step is just to see if I'm eligible for a transplant. The next step is to get the PD catheter inserted. Then get through the training and finally begin dialysis. I'll see how I feel on dialysis as well as how I manag it. That should help me make the final decision.
But this is definitely overwhelming! I feel somewhat fortunate that I've had time to adjust--my renal function has dropped three times but then stabilized for 2-3 years following each drop. So I've had time to adjust.
Marj
bryan1973 marj01201
Posted
The test for the transplant was just blood tests, weight check and a heart test where they put drugs in your arm to speed up your heart rate.
Live been on transplant for 3 years had the call at xmas but the organ never came in time (3 hours the person has to pass away once the life support is turned off). Emotional rollercoaster took me a good week to get over sitting in a hospital form13 hours waiting then nothing at the end.
When you sign the paper to go on the transplant list, they don't tell you about missed calls etc.
I have a pd catheter fitted but it doesn't work, they fitted at the same time as doing a triple hernia op last year.
They are are now talking about putting some lines in my chest to put me on hemo a couple of times a week, but I so don't want hemo. But I also know that if I get too ill then they won't give you a transplant.
Recovery after a transplant, and I know this as my deputy manager has had a transplant, is home in 4-5 days and 6 weeks back to work, depending on what job you do.
Good luck x
marj01201 bryan1973
Posted
Thanks for sharing this with me. I'm in the USA and have thought the testing was much more extensive then what you describe. Where do you live? (I gather from what I've learned in this forum that this varies some from one country to another.
Marj
bryan1973 marj01201
Posted
I'm in the uk in Birmingham. Maybe different countries have different ways of working?..
marj01201 bryan1973
Posted
I'm not sure. I'll post what I learn after my appointment on Tuesday. Of course, I've experienced a little improvement in my renal function over the past three months. If there has been a little more improvement I'll be back into Stage IV. I'd be thrilled with that at this point. But I'm not really counting on that...
Marj
andymac61 marj01201
Posted
marj01201 andymac61
Posted
I'm sorry to hear that. I gather that they're pretty picky as to who they qualify in the USA so there is no way for me to really guess as to whether I would qualify at this point.
Even if I do qualify it takes, on average, about three years before I could expect a match with a deceased kidney donor. That would put me st 68 years of age. So in my case my age begins to be a real issue. (And in the USA the statistics of those on the transplant wait list who actually receive a kidney before they pass away are pretty poor. So there is no reason to think that being put on the transplant list will result in a transplant.)
I was pleased with the modest improvement in my kidneys over the past few months. However, from the transplant eligibility perspective, the modest improvement may have resulted in just slightly too much renal function...
Frankly, if they would improve enough more to get me back to an eGFR of 18-20 (creatinine of 2.2-2.4) I'd be thrilled.
My nephrologist had initially told me he didn't expect I would need dialysis for 8-10 years. That would have put me between 72-74 years of age. But then I became quite ill with what became walking pneumonia. My blood pressure became even lower. My renal function deteriorated.
And so now here I am with an eGFR ranging from 14-15.
Well, we've each got unique stories to a certain extent. It's just good to know that we're not alone. This waiting for the other doe to drop, so to speak, is not a lot of fun.
I appreciate hearing what others are doing to cope with all of this as well as to prepare for the big D.
Marj
john85166 andymac61
Posted
Andy can I ask what stage cancer you had. I had stage 1 two yrs ago and was hoping for transplant from a friend. My surgeon says 5 yrs but I'm yet to speak to an oncologist that specialises in this area. Also mine was bowel. Some forms are considered worst than others for coming back. I am hoping for an earlier transplant.
john85166 marj01201
Posted
Marj mine just drops on its own. No ryme or reason. Drops about 3-4 yearly. It decided to fall when I've never been healthier. So weird. Why it is failing now after a lifetime is a mystery. I do find restless nights and inability to feel comfortable and just feel good is a heavy drag. Perhaps the most annoying part is the prognosis is always decline unlike other illnesses where you can look forward to eventually feeling better.
I don't think people realise the worry we fight with.
andymac61 john85166
Posted
marj01201 john85166
Posted
Marj
john85166 andymac61
Posted
Andy i saw this article. Seems reliable but who knows.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685882/#!po=11.7424
Gives a table of standardised time duration b4 transplant. It might be encouraging. But all said i suppose its up to your surgeons to decide
john85166 marj01201
Posted
Just think Marj if they diverted the money from destructive weapons to health care research then we'd probably be ok. 😊
marj01201 john85166
Posted
Absolutely🐶