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Author Topic: Must find a way to avoid a disaster!  (Read 173 times)
Athena
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« on: September 04, 2019, 07:25:49 AM »

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!
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kristina
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« Reply #1 on: September 05, 2019, 02:07:45 AM »

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. :grouphug;
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Athena
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« Reply #2 on: September 05, 2019, 08:53:48 AM »

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.  :flower;
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Athena
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« Reply #3 on: September 21, 2019, 05:30:20 AM »

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?
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kristina
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« Reply #4 on: September 21, 2019, 06:12:48 AM »

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. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
LorinnPKD
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« Reply #5 on: September 21, 2019, 11:52:28 AM »

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.

« Last Edit: September 21, 2019, 11:55:34 AM by LorinnPKD » Logged
Athena
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« Reply #6 on: September 21, 2019, 09:33:50 PM »

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?
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