Must find a way to avoid a disaster!

[Athena]

I am back into researching what may be able to help slow down or even halt progression of CKD (apart from the basic conventional care of controlling BP, BG, hydration etc)! If anyone can please throw my way anything that they have heard or have experienced as being beneficial, I would greatly appreciate it.

I'm now looking into the supplement pycnogenol (french maritime pine bark) & curcumin. I'm sure there are many other natural anti-inflammatories & anti-fibrotic agents.

Chinese herbal medicine also seems to be a good contender for consideration.

There are many risks & uncertainties with all of this, but not doing anything is also guaranteed to lead to end-stage kidney failure. I still can't believe they haven't found a way to help save people from a life on dialysis & transplantation!

[kristina]

Hello Athena,
I am very sorry that you find yourself in such a desperate situation and I just feel the need to say that all you can do is to continue with a healthy & mainly vegetarian diet ...  and please continue to be careful about your potassium-intake and most importantly : please speak with your doctor/nephrologist about it a.s.a.p. and please also find out from him/her, how much liquid your kidneys can “work through” a day right now.
Perhaps your doctor/nephrologist could arrange for you to see the dietician ? Please ask your doctor about it, you just could ease your mind and make sure with the dietician that you are eating the right food  ?

But please be very careful about all these expensive “supplements” !!! Many of them are just lots of talk & promises but nothing else and the result is that the producers of these “all promising supplements” make lots of money on your hopes.

Nevertheless, your doctor could take a blood-test from you to find out whether or not you NEED anything i.e. vitamins etc. and if the blood-test is alright, just continue what you have been doing so successfully all these years with your intake of food and drink.
I wish you good luck and please see your doctor and your dietician a.s.a.p. and, of course, the Internet is a great help, but whatever you may find on the Internet, please speak with your doctor about it. Your fragile kidneys need all the protection they can get right now.
Good luck wishes from Kristina.

[Athena]

Thank you Kristina for your reply. I will have to very carefully proceed with any herbs or supplements through my Neph (& always with frequent blood tests along the way to monitor the effect these supplements may have on me).

I hope life has been treating you well Kristina. It's so nice to hear from you. 

[Athena]

I have seen my primary care physician & he was very candid & truthful. There is NOTHING that I can do to avert the disaster of total kidney failure. He told me the best thing I can do is to not think about it & try to enjoy my life as best I can in the meantime.

How does one do that, while totally ignoring or fearing the future?

[kristina]

I have seen my primary care physician & he was very candid & truthful. There is NOTHING that I can do to avert the disaster of total kidney failure. He told me the best thing I can do is to not think about it & try to enjoy my life as best I can in the meantime.

How does one do that, while totally ignoring or fearing the future?

Hello Athena,
The same happened to me and just to make sure I saw a second doctor who unfortunately said exactly the same, so there was no doubt about the fact that I needed dialysis-treatments a.s.a.p.
After all that was sorted out without any further doubt, I sat down and thought about all the "things" I do enjoy and that really gave me hope for the future.
I thought about all my favourite indoor activities and all my favourite outdoor activities and I continued with it all as best as was possible, even through my dialysis years (with less energy, of course, but I continued all the same and tried hard doing so) and I still continue with it all now after the transplant.
Of course, there are fears involved at all times, even after the transplant there remains a fear of the possibility of losing the new kidney etc., but that is life and at least we still have a life and we are also still given the possibilities to enjoy our life and try and make the very best of it !
And there are also occasional success-moments coming along.
I do wish you all the best and don't forget, we are always here to assist as best as we can.
All the best and good-luck-wishes from Kristina.

[LorinnPKD]

Athena, I know this must be a frustrating and emotional time for you.  We've all been through some form of it in knowing treatment is right around the corner, and it's just an awful feeling to work through.

And kristina has excellent advice, as always.

I had ten years between my initial CKD diagnosis and the beginning of dialysis, and for me that meant ten years of absolute dread and worry. I was a wreck the whole time.  But then I started dialysis three years ago, and while no, it's not fun, I can honestly say that my life is much better than I had dared to anticipate. I was shocked to find how much better I felt even after the first treatment.

As for quality of life, it's forced me to slow down and rethink everything.  And as a result, I have never been more grateful for my life, the people in it, and everything I've been able to experience so far.  And what I want out of life is simpler now: Every day, I get to sit with my dog, and watch the seasons come in, and see my family, and eat delicious food, and literally stop and smell the roses.  I enjoy my life and appreciate it in a way I never really did before, and it's all because dialysis gives me the option to keep going.  And even if it all ended tomorrow, I am so grateful to have this beautiful day.

And I think you're going to do just fine!  It's clear from your updates here that you're proactive, you are motivated, you do your research, and you are totally into taking control of your health and being your own best advocate.  That is a great foundation for success.

[Athena]

Thank you Kristina & Lorinn for your wise words of advice.

Just overnight, I seem to have put on a pound of weight! I don't have swollen ankles or legs but am feeling bloated & dull in general. This must be fluid retention. I've had sudden baooning episodes before - they just go away as quickly as they came.

What should I do? I'm going on a date in a few hours! Avoid all salty foods?

[Athena]

My swelling cleared up in 24 hours! It was so good to watch the fluid retention clear away. I think my kidney disease has turned me into a hypochondriac! The slightest thing can make me panic. Guess this is what waiting for end stage looks like ... 

[iolaire]

Avoid all salty foods?

In the past week I've bounced up and down between 195.7 lbs and 205 lbs! Including the a for 205 lbs to 198 lbs overnight!  I attribute that all to salty foods last week.  I'm post transplant so don't have restrictions and got hit hard weight wise from Chinese food midweek and then chips, dip and very salty popcorn on Friday night.  I have to be good this week.

[Athena]

Iolaire, do you now have salt & other dietary restrictions post-transplant?

[iolaire]

Iolaire, do you now have salt & other dietary restrictions post-transplant?

No none, but my weight has been creeping up so I'm trying to be a bit more careful.

[Athena]

Lorinn, may I know what type of dialysis you undergo & how often? It sounds like you have a great routine that really works for you. I feel happy in knowing that.

I am very much on my own with no children or spouse. I really should have remarried by now, but life just got in the way of achieving that. At times like these, one really should a strong family support network. But instead I need to rely on the mercy & charity of caring doctors & other health professionals. It's exhausting always trying to make people work harder for you, not their preferred less!

I do have a fantastic best friend. In fact, I feel safer not being romantically linked with anyone since the heart will always end up being broken. 

[LorinnPKD]

Hi Athena,

I'm on in-center hemo 3x a week for 3.5 hours.  Personally, I think I could get away with 3 hours, so I'm gently trying to negotiate....

So far as support, I have my mom, who has been all through the CKD process with my dad -- he lived for 25 years through ESRD and she was instrumental in keeping him healthy.  She's my best friend and it's really nice to have someone who understands my labs and how all of this works in general.  I have a sibling with PKD who is also on dialysis, and we compare notes and it's super helpful.  And that's it for family.  I have some faraway relatives who ask about me, but I also have lots of faraway relatives who never reach out and also several good friends who have mysteriously vanished, and I think that's weird!  But that's how it goes sometimes.

I have some friends scattered around, and a few here in town, and a really good neighbor who is also dealing with a long-term illness, so we have much in common. And I have a wonderful little dog who couldn't be sweeter. She's my constant companion at home.

And like you, I try to build good relationships with my doctors and clinicians -- they're my lifeline, and it's so hard to find an excellent nephrology team so I'm grateful to have them!  I ask a million questions and maaaaybe I ask more of them than other patients might, but I also do things like make sure my dialysis schedule is compatible with their office hours to make their visits easier.  We're a partnership, you know?  We're in this together.  And it's their job.

I think it's wonderful to have a fantastic best friend!  It's a good person who will stand with you and keep you grounded.

But I gotta admit: There's not a day that goes by that I don't thank my lucky stars that I'm not married!  I mean, lots of spouses are wonderful, attentive, caring, steadfast beacons of support -- there are several who read and post here at IHD and they are amazing!  My sibling's spouse is fantastic.

But I was married a long time ago, and I can honestly say that there's no way that particular person from my past would have been able to handle all this.  And I think about the burden of lugging another person through this -- trying to explain why I'm tired a so often and why the housework is always only half done and why meals have resorted to daily grazing/picnic food because cooking is exhausting.  I am grateful, so grateful, so spectacularly grateful that I have packed light, in a romantic sense.  I'm happy with my choices.  And I don't feel deficient in any way.

[Charlie B53]

Salt is NOT your friend.  If your food comes in a can or a box, it most likely has salt added.  Ditto if you are eating out anywhere.

A lot of the times the salt flavor is hidden by other spices or sugar, so you don't even taste it.  Either way, your body sees it, and holds more water to balance it.

Once the kidneys filter out the salt they will also take out the excess water.  This is why you can have such sudden weight gains and losses.  BOTH are very hard on your kidneys.

Learn to look at labels, and ingredients. 

Google 'Renal Diet' and start learning to eat more responsibly.  Reducing the work load on your  kidneys can make a major difference in the time you have before needing to begin dialysis.

Cut out the excess potassium (salts) and phosphorus, both are hard on our kidneys.  Learn to watch your fluids, how much you can safely have in your food and drink without faining much weight.  Here again, reducing the work on your kidneys.

Together saving kidney effort and increasing time before needing treatment.

Some have managed to put off dialysis for years.


I wish I had known this many years ago.

[Athena]

https://www.cochrane.org/CD010070/RENAL_altered-dietary-salt-intake-for-people-with-chronic-kidney-disease

I looked up the link between salt intake & progression of CKD & found the cochrane meta-analysis above. It seems salt reduction has more evidence of reducing swelling, proteinuria & BP than anything else, like for example altering the speed at which dialysis treatment needs to be started.

Salt is NOT your friend.  If your food comes in a can or a box, it most likely has salt added.  Ditto if you are eating out anywhere.

A lot of the times the salt flavor is hidden by other spices or sugar, so you don't even taste it.  Either way, your body sees it, and holds more water to balance it.

Once the kidneys filter out the salt they will also take out the excess water.  This is why you can have such sudden weight gains and losses.  BOTH are very hard on your kidneys.

Learn to look at labels, and ingredients. 

Google 'Renal Diet' and start learning to eat more responsibly.  Reducing the work load on your  kidneys can make a major difference in the time you have before needing to begin dialysis.

Cut out the excess potassium (salts) and phosphorus, both are hard on our kidneys.  Learn to watch your fluids, how much you can safely have in your food and drink without faining much weight.  Here again, reducing the work on your kidneys.

Together saving kidney effort and increasing time before needing treatment.

Some have managed to put off dialysis for years.


I wish I had known this many years ago.