First great to see all the posts here from people.....helps knowing I am not alone.
While I had known for a very long time that my kidney function for below normal....no one quite sat me down and explained what that meant. My PCP never really said "you have only 40% kidney function left"....that would have certainly got my attention. The neph I was referred to could have done better than see me for 10 minutes and leave me with "well let's continue to monitor it and see where it goes"....all of this left me with a sense that "OK so kidneys are not functioning properly....but none of the experts here is raising alarm bells and ordering procedures....how bad can it be".
Fast forward 4 years I move to new area and get a new doctor and one first blood test he picks up the phone and calls me with "you have only 24% kidney function left" and referred me to a neph.....and now with a slew of tests ongoing....I am angry at not being explained what GFR numbers meant....scared that I am going to die....what will happen to my career, my kids, my marriage, my family. All these thoughts/information confusing and depressing me.....are the medicines actually hurting my kidneys and not helping (did that ACE+ARB therapy I was on for 3 years destroy my kidneys?), many cancer survival rates better than CKD, etc etc etc
The neph says at this rate I may be on dialysis in 2 years and prognosis post dialysis initiation is 5-6 years survival....so I am 42 now...I will be dead at 50 if my math is right!
Three months ago....I was looking at my 401K, thinking of applying for that promotion, buying new clothes, planning kids college education, scoping out new vacation destination....you know all the things you do when you are living. Yesterday I caught myself downloading "After death planning guide checklist" from the internet.....went down to the parking lot sat in the car and cried...prayed.....cried again...........
Going for biopsy in two weeks.....almost scared to go.....haven't heard any good news in three months....no ray of hope....just more dismay....afraid the biopsy is just going to confirm the prognosis.....I feel this mental torture and anxiety is destroying me from the inside more than the disease itself.....if only others can see that each morning when I kiss my wife and kids goodbye now for work....what thoughts cross my mind.....before I kissed goodbye...as a depsoit until I kissed hello in the evening.....now each kiss goodbye has a whole new meaning
anyways....thanks for listening....it helps share these feelings even if there may be no hope................
Spend some time on this website reviewing Forum posts and you will find individuals who have been on dialysis for decades!!! Given your circumstances, there is no reason why you cannot take complete control of your life by gaining and applying knowledge regarding the steps you can take to assure the health needed to continue to work and pursue and active life.
I am 12 years your senior and started HHD training and with it hemodialysis, some 10 years after being diagnosed with PKD. I have been under the care of a competent nephrologist who has monitored my condition and provided me with the excellent advice that led to the critical choices I made leading up to a GFR of 9 and creatinine in the 6's. I was never hospitalized. I never got sick, e.g. no symptoms of kidney failure, in spite of my kidney function. As a PKD sufferer, I do not have fluid retention issues and still produce adequate amounts of urine. I have continued to work a demanding full time job that has required short notice multi-night travel and have not had any difficulties maintaining my 5X weekly HHD treatments. I would not be able to do this without a great medical support team, capable and willing care partner/spouse, and understanding boss and employer. I could go on, but instead, I encourage you to read the HHD patient success stories (I'm in there) as well as many of my posts to get a better sense of the future that could be yours with the right attitude, effort, discipline and desire.
Sleepless, save for three or so details, I could have written your post. I'm 54 M, diagnosed May of last year w/Stage 3, GFR 35. My family doc mentioned once that I should see a neph, but I never had a referral. Then last year, I was referred. I don't ever remember my family doc even once put GFR in plain terms, like you said. Also, like you, my dialysis time-frame is around two years.
sleepless, prognosis is not longer just 5 years. That was what it was years ago but now they have people living 15 to 20 years. Please don't give up. Staying positive and willing to fight to keep yourself as healthy and active as possible is one reason the doctor says I am doing as well as I am. I have plenty to be discouraged with right now but I still keep going. I am on dialysis and see those who have given up. I refuse to give up and have fought this disease for over 12 years now. I started dialysis 4 months ago. I learned that years ago there was more infections because of how dialysis was done. Now all the equipment is disposable and that means less complications to keeping well. Years ago the equipment was cleaned between each person using it with chemicals. That is not the case in todays dialysis centers. So keep positive, read all you can on this site and others. Ask for family support and if they don't give it there are counselors that can help you. My church support is great. I am married to a Christian counselor so I have great support. I hope the doctor did tell you that if you watch what you eat and how much you drink is important right now. No salt or very little and drink plenty of water to keep the kidney's cleaned out. Hope this helps you a little.
hi,steve 55 yomale was diagnosed 6 2012 stage 4 colon cancer, had surgery then chemo ruined my kidneys. its been a long road but been on home hemo and doing great. just deal with it head on and you will do fine. steve
It's unfortunate that I'm hearing there's other people that aren't being told by their PCP that they are having issues with their kidneys (or, they have CKD). I'm still fighting the urge to write my former PCP of 39yrs a letter because he had information 13yrs ago that my kidneys weren't functioning properly and never said a word to me about it. 13yrs ago!! I could have made some serious life changes back then and I may not be in the state I'm in now. It took the first neph I saw about 20 seconds to find info in my med files that I had issues 5yrs ago and no one said anything. Then a moment later he said it went back 13yrs ago. He asked me "why didn't you do anything about it back then". Talk about having to contain myself. I told him "WHY DIDN'T SOMEONE TELL ME!?" Then he had the audacity to say "I don't think there was any neglect on the doctor's part! And I have heard similar statements from other doctors I have seen since the first neph. Is there some sort of doctor bro code that we don't know about!? What would you call if someone has info that can impact someone's life and they don't say anything? I call it "NEGLECT"! My former PCP is having health issues now and if I write the letter to him I will end it by saying "I hope you have a better doctor than I had for 39yrs".
Hey sleepless Dialysis is a big money maker now.I was told to lose weight by my pcp years ago because I had high blood pressure and diabetes but I didn't listen, I've been an hemodialysis for 8 years now , I felt the same way you do ( why me) but I have to much to live for im only 56 years young.I have good days and bad ( more good now ) so you hang in there.
I am sorry you have to go through this. But I do know exactly how you feel. I was tole during my pregnancy that I would be put on dialysis after the baby was born and I had no idea what that was or was caused it. I thought I was going to die and made plans to have someone take care of my son. But here I am 14 years later. I had to learn alot on my own because this is not a dieases that is talked about.
I have been on dialysis now for 14 years and it has been come a part of my life. Like going to work, you just get up and do it. I also joined a group called Dialysis Patients Citizens that give me a way to let others know about CKD and that they are not alone.
Feel free to contact me anytime as a sounding borad or just to know that you are not alone.
Thank you all- your stories are all inspiring and have provided tremendous support.
I am in MUCH MUCH better mental health than I was a month ago.....last three weeks I have taken on to becoming a Sous Doctor......as stumpr54 stated- the best defense against this disease is knowledge. I have handled and slayed many many dragons in my life and after the first shock wore off...I decided I am not going to let this dragon take me down- I will slay it.....or ride on it.
It is clear to me that there is need for a movement to educate PCPs about CKD. While there is no cure, in most cases the progression of the disease is preventable if diagnosed early....and with more than 1 in 10 us Americans suffering from this disease.....it is important that PCPs inform patients in lay terms EXACTLY what the GFR numbers mean.....for instance (what would have helped me):
1. your GFR is 27
2. this means you have only about 27% kidney function left
3. this disease is chronic- meaning it will get worse with time- ultimately resulting in all loss of kidney function requiring transplant or dialysis
4. there are many variables in how quickly your disease will progress- some in your control, others not
5. things in your control include diet, close blood pressure management, losing weight and staying active
Question for senecabeep, stumpr54 and others who stayed on dialysis- have you considered transplant? If you did and decided to stay with dialysis- why?
I am blessed with tremendous family support and ever since I got diagnosed I have been informing family....and several people have come forward (with potential matches) to donate ....so I am wondering if transplant is a viable option over dialysis- when the time comes.....would love your thoughts.
BOTTOM LINE: as Marcus Aurelius in movie 'Gladiator' says..."Death smiles at us all, all a man can do is smile back.” or tell it you just ain't ready for it yet- call back later.