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**stumpr54** · 03-06-2014, 05:03 PM

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** · 03-06-2014, 05:53 PM

Thank you....you story and words are truly inspirational...........

Off to the learning curve.............

**Bimmerman** · 03-10-2014, 09:02 AM

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.

Stay strong, brother!

**kcramer** · 03-10-2014, 09:18 AM

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.

**drake01** · 03-15-2014, 04:42 PM

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

**GeoD7019** · 03-20-2014, 06:35 PM

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".

**mrlarrymartin** · 03-20-2014, 09:59 PM

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.

**senecabeep** · 03-21-2014, 07:54 AM

Hi sleepless,
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.

Angela Lattimore
seneca_beep@yahoo.com

www.dialysispatients.org

**sleepless** · 03-25-2014, 03:15 PM

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.

**sleepless** · 03-25-2014, 03:28 PM

GeoD7019.....educate educate educate yourself.....armed with that knowledge- do what you can to slow it down...knowing that you (like me) will inevitably need to get dialysis or transplant. I work in biotech/pharma so am aware of many advances in science in CKD. By 2022-24 there will be some great viable options available that will help us get back to what we were created to do- LIVE! Our mission now is to delay, slow progression of this disease until some of these options are available. Personally for me I do not see dialysis as a permanent options....perhaps as an option for a permanent solution.......

I have forgiven my PCP- no need to keep that burden...holding a grudge against him or the neph is not going to improve my health......knwoledge will

Arm up with knowledge and control it- don't let it control you!

**kcramer** · 03-25-2014, 05:14 PM

sleepless:" have you considered transplant? If you did and decided to stay with dialysis- why? "
I am on a transplant list and waiting. In the waiting you have to do dialysis if your numbers show the need. I was listed Sept. 2013 and started dialysis Oct. 2013. Looking for a live donor since I have PKD (polycystic Kidney Disease). As I look for that, which is up to the person needing a kidney(very hard) I am on a list that in the next three years my insurance has permitted. I have been told that it will be at least 1 1/2 years to 3 years before I will get one. All depends on my health which I am trying to keep positive and as healthy as I can. Dialysis is keeping me healthier at this point. Others might not be on the list because they think a younger person should get a kidney first not the older ones. I am 66 and believe that if there is a kidney out there for me, God will provide it. If there isn't, He will get me through the rough times. I am thankful I am positive and that I have assurance that my life is important and I can still help other people. Keep busy, as healthy as possible and focus on who God made you to be. Others might not feel this way but it helps me and many others.

**GeoD7019** · 04-23-2014, 10:23 PM

No worries sleepless. Since I was diagnosed with CKD I have researched the topic to the point of madness. As a former chef of 14yrs I have searched and found many natural foods that will help improve kidney function and clean the body of impurities. I'm also in the beginning stages of organizing fundraising for the R&D of the artificial kidney. The artificial kidney is projected to be on the market within the 7-10yrs. Hopefully sooner if I can get my organization going. It's a product I believe in strongly and just about every other CKD patient should too! The artificial kidney will drastically reduce or eliminate the need for dialysis and it's believed anti rejection drugs will not be needed. It should be a no brainer for insurance companies to pay for this procedure. One year of dialysis per patient costs $100,000. The artificial kidney will go to market for $30,000. Just think. There's approx. 26 million CKD patients. Some are children (let's say 6 million). If every adult CKD patient donates $1...that's 20 million dollars towards the cause!

**rickster12** · 04-24-2014, 10:42 AM

Originally posted by sleepless View Post

Hi all.....

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................

AR

First off, don't think about dying. While everyone should have their continencies in place, don't harp on it. I was similiar in that at the onset I really didn't have a lot of information that I could have had. But the key is to get informed. Make sure you are seeing a nutritionist. The thing with me is this disease has brought on some blessings too. I don't take one day for granted any longer, things that don't really matter no longer bother me. As was mentioned above, look into a transplant. While it's not as good as never having a kidney issue, it will allow you to live closer to a normal life and it will avoid dialysis. I just started dialysis in October of 2013 and it does make me feel a lot better, but I I want my freedom back. I have found a viable match and she is going through the testing now to confirm so my hope is by summer I will have a new kidney! I wish you the best and keep posting here. This is a great resource for information, comfort.

**stumpr54** · 04-24-2014, 12:32 PM

Hello Sleepless,

I've posted on your question regarding my position on transplantation. I am listed with two different kidney transplant programs, the first in January 2011 (18 months before starting HHD) and a second in November 2012 (4 months after starting HHD). I've now been listed for 39 months and have had to return for routine but required follow up testing to stay active on both transplant programs. Besides the wait times, the transplant programs can require 6 month follow up visits with the transplant coordinator and nephrologist as well as tests ranging from cardiac stress tests to echo cardiagrams. Besides the high cost of these hospital conducted tests, one must also take 1/2 days or full days off of work for the procedures.

The approximate 2 year interval follow up tests seem like a "racket" to drive revenue but the respective programs need to verify that you remain a viable candidate. My history of basal cell carcinoma (mild skin cancer) requires me to continue to see a dermatologist on a semi-annual basis, and with it incur charges of between $500 and $1000 before insurance or risk disqualifying myself from transplant viability. The same goes for annual PSA testing as well as regular dental care - yes regular dental care.

I continue to jump through the many hoops that have been placed before me by the respective transplant programs. Transplantion comes with an array of risks and considerations. The life of the graft (transplanted kidney) is a best guess estimate with a living donor kidney average life of 10 to 20 years and a cadaver kidney about 5 to 15 years. The variables that influence graft life are innumerable, e.g. the condition of the donated kidney, the dosing of anti-rejection drugs, the post transplant life style (diet, exercise, infection avoidance) of the recipient and adherence to the anti-rejection drug regimen, etc. This web site is rife with individuals who have had multiple kidney transplants, all necessitated by the failure of prior transplanted kidneys. Once a transplanted kidney has failed the challenges of obtaining another match are increased because of the new antibodies developed from the first transplant. Each successive transplant carries the prospect of development of new and different antibodies making matching more difficult and thus increasing the time to find that match. Each transplantation is major surgery with a typical hospital stay of 3 days for recovery and the risks associated with major surgery.

In summary, there are no assurances that a transplanted kidney is going to last the rest of your natural life. Clearly, the older one is as the time of transplantation the greater the likelihood of the kidney lasting to end of life. I recently read the obituaries to find a fellow who was transplanted some 4 years ago in his late 40's/early 50's. Cause of death was not listed. Another fellow received a very well matched kidney from his sister while in his late 30's and that kidney failed after 10 years. The individual is now struggling with 3 day per week in center dialysis.

Until a viable artificial kidney is developed and/or means to reverse kidney damage, the current "artificial kidney" technology of hemodialysis or peritoneal dialysis are the only certain ways to continue life with kidney failure. This makes CKD the only major organ failure disease that can be "treated" on an ongoing basis to continue life. When livers, lungs, and hearts fail, the only means of continuing life is an organ transplant. If that organ is not available, the individual's prospects for continued life are bleak. Just like kidneys, these transplanted organs have unknown lives, but unlike kidneys, these organs are not obtained from living donors, reducing the donor pool appreciably.

Kidney transplantation would offer my care partner and I the freedom from our 20 hour per week part time job. I have assimilated well over 60% of that time in doing things that I would already have to do whilst sitting in one place for several hours. Nocturnal treatments take only a little time out of my waking hours.

The imposition of the HHD regimen upon my work and play life has not been significant. It does require constant discipline, planning and organization, which have become rather routine through the constant repetition. Much like an olympic athelete who spends hours and hours practicing to become proficient, I get the same opportunity to practice the routine of HHD and excel at it.

When the call comes from my transplant coordinator, I'm just as likely to take a pass and let the kidney go to the next person on the list who is probably not doing as well as I on dialysis.

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