organplayer

[Haggishead]

i have blood tests every 6 weeks or so and my EFGr is 35 . When i ask about my results it says no treatment required. Im on Rampiril and other meds for AFi heart failure etc but never have had any treatment for CKD. On all my files it says this woman has heart failure with preserved ejection fraction and CKD. Blood test for heart failure Says results below 300 no heart failure above 300 probable heart failure, mine was 1,580 and was suggested i saw cardiologist within 6 weeks , I’ve never seen one , just phone calls!! Do you think it’s because i am 85 years old! (Female)

[barbara55109]

There really isn't any "treatment" for CKD. They treat the underlying conditions. If you have age related CKD there isn't an underlying condition to treat. My CKD is from dehydration so I am on anti diarrheals. People with CKD from diabetes or high blood pressure and treated for those conditions. The only real "treatment" is dialysis and transplant and your numbers aren't there yet. Also, some centers don't offer transplant for someone in the 80s, especially if they have other serious conditions.

[Haggishead in reply to barbara55109]

thank you, I was just curious’ !!!!

[gojets in reply to barbara55109]

Most people never reach that stage of dialysis or transplant. Do not let this drive you crazy.

[OldTownhammock in reply to gojets]

thank you.

[orangecity41 NKF Ambassador in reply to barbara55109]

I am a senior age 81 and was diagnosed 5 years ago with ckd 3b. My cause for CKD is partially age related but also due to a medical condition. I am being treated for CKD with a diet, based on bloodwork results, which has helped.

[Bet117 NKF Ambassador in reply to barbara55109]

Hi Barbara,

Yes, there is no cure for kidney disease, at any age and kidney disease is not exclusive to older people, but with monitoring, correct medication as well as medication dosage, diet based on labs, avoidance of NASID pain relievers, exercise and drinking your water, it can hopefully be controlled with the goal to stop progression.

Other conditions may add to a situation, but dialysis is not the treatment in every case as each is different.

You have our support here at any time.

Our community is filled with wonderful, knowledgeable and compassionate people of all ages who would be happy to chat with you at any time.

Reach out!

Bet

[barbara55109 in reply to Bet117]

All my reading and Drs says it cannot be stopped. There is some evidence it can be slowed, but no one but snake oil salesmen - and there are many - say it can be stopped or cured. Since I was diagnosed at 57 they have told me I WILL need dialysis eventually. Unless I get hit by a truck and killed or something. They told me I'd be on dialysis by now. I even have my fistula (since I can't do PD) waiting. Since my CKD is from long term dehydration from living colon free for 30 years, it has slowed down since I'm on max dosages of two anti diarrheals. I'm avoiding caffeine since that is so dehydrating as well. IF I could eat veggies I could probably slow it down more, but I can't. I cannot tolerate fiber because of my ileostomy. My transplant nephrologist hopes I can hold out until my name comes up. It's a 6+ year wait in my region and I've been on the list for 2. He doesn't expect that miracle though. While dialysis and transplant may not be in the cards, for someone who doesn't get diagnosed until they are already past life expectancy, it is for most of us, unless something else gets us first. I really hope I won't have to go on hemo soon. It will be devastating for me and my family. Loss of my job and health insurance for all of us is at major risk. There is no night time hemo in my region and I'll miss two or three days of work a week. Once my FMLA runs out I will be fired. CKD is a terrible disease with no cure and crappy treatment options. We are still in the dark ages with no new treatments in my lifetime and such a poorly managed transplant system that more donated organs end up in the trash than in people in need. Don't mind me, I'm having a crabby afternoon. Saw my Dr. yesterday and I now have arthritis on top of everything else. I've been fighting to live since I was a teenager and I'm sick of it. It is so hard to work full time in a stressful job and manage such health problems. Dr. on my case to go to the Y every fing night , 7 days a week.

[Bet117 NKF Ambassador in reply to barbara55109]

Dear Barbara,

You are one courageous woman to have gone through so much; continue to fight!

You have a good team behind you as well as a family who loves you. Every day medical science is coming up with new discoveries; in your case, hopefully they will tackle several of the chronic illness that you have been dealing with. I empathize with your feelings and concerns.

Bare in mind that every person is different and responds differently to treatment. With Kidney issues, there is no cure but the goal is to slow or stop progression, which is what I was getting at.

Your case may be totally different than other members of the community and yet similar.

Some on this community and the Dialysis and Transplant Communities have walked in your shoes. It isn't easy.

As far as your job and insurance, I realize that the FMLA goes so far and not every employer is willing to work with you; possibly your doctor's or patient assistance can help you find alternatives.

I don't know where you live, but the Affordable Care Act has provided full coverage health insurance to a friend who was afflicted with terminal breast cancer. So hopefully there is a silver lining in your cloud of that area. It's upsetting and you have my full support. Go to My Hub at the upper left side of this page and click on it. Scroll down and check out the other Health Unlocked Communities, such as Dialysis as members there may be able to share their journeys and offer valuable information and support.

Bad days are part of life. I'm glad that you reached out to us here as you are not alone.

Stay strong and know that thoughts and prayers are with you.

Bet 🙏

[JackieJ_NKF Partner in reply to barbara55109]

Hello Barbara,

The NKF also offers additional support resources such as our PEERS Program. It's a peer mentoring program, where individuals are connected via phone with trained mentors who have been there themselves.

Our NKF Cares Team is another great option for support. The Patient Information Help Line, offers support for people affected by kidney disease. It's designed just for patients, family members and care partners. If you'd like to speak with one of our trained specialists, please call: 1-855-653-2273.

While we may not have all of the answers, we do our best to get you in the right direction. I'm definitely wishing you the best.

Jackie J. (NKF Partner)

[orangecity41 NKF Ambassador]

Here is a link to information on eGFR . kidney.org/atoz/content/gfr

[Dana66CKD]

We are all here to listen and support and many with good information. Sorry it's been so tough both emotionally and financially.

Stay safe and hang in there 🙏😥