Now I am scared.....

[fartikins]

Hello - I was reading a post on Facebook and there was a reference to a wicked condition called Calciphyaxis. It affects some ESRD patients and is quite prevalent in type 2 patients who inject with insulin - caused by the needle going in. Thats me. I wish I had never seen that post because it has scared me half to death. Has anyone out there heard of this in their kidney community - thanks

[Bassetmommer NKF Ambassador]

STOP LOOKING ON THE INTERNET!!! Why do you do this to yourself? First of all, it is extremely rare... and it occurs when people are on dialysis, which you are not. Stop it!!!!! You have more chance of getting hit by a bus. (said with kindness)

"Calciphylaxis is very rare. In people who are on dialysis, it happens to approximately 35 of every 10,000 people (or about one-third of 1%). In the United States, there are just over 550,000 people on dialysis, so just under 2,000 cases of calciphylaxis happen on average each year. In countries with lower rates of kidney disease, calciphylaxis is much rarer."

my.clevelandclinic.org/heal...

[fartikins in reply to Bassetmommer]

Thank you for sending me the article. It was very informative. I told myself sometime ago that I must stop looking on the internet but as they say 'I fell off the wagon' . I shall have to get my husband to hide my devices. My gfr is now 18.5 and has increased slightly and I would like to keep the increase going if possible. You are very informative and very disciplined and I look forward to reading your posts. One thing I have decided is to limit my mug of very weak coffee to 2 a day and the rest will be water. My sugar readings are good and my b/p is steady. The best thing I can do is be like. you and stay off dialysis as long as possible - thanks

[Bet117 NKF Ambassador in reply to fartikins]

...and eat healthily, get some exercise and follow doctors orders. The internet is no replacement for a doctor who knows you and your health issues.

Live each day rather than spend the days looking for things that may never happen.

[fartikins in reply to Bet117]

Thanks for your reply.

[Bet117 NKF Ambassador in reply to fartikins]

Gosh, no thanks needed. Think of what is and good rather than what isn't and may never be.

[Bassetmommer NKF Ambassador in reply to fartikins]

Dearest Fartikins, I am no saint, believe me. You crack me up and I only want the best for you. Reading all the junk on the internet is not a good thing. You are doing great. Hang in there.

[fartikins in reply to Bassetmommer]

Thanks for that - it bought a smile to my face....

[novemberlady1 in reply to fartikins]

MY EGFR WENT DOWN TO 17 AND NOW I AM BACK TO 30. I JUST GOT A FILTERED WATER PITCHER AND HAVE BEEN DRINKING A LOT OF WATER AND TRY TO WATCH WHAT I EAT. THIS WORKED SO FAR FOR ME AND HAVE NO IDEA IF IT WOULD WORK FOR YOU BUT MY POINT IS THAT SOMETIMES IT WILL GO UP. DON'T DRINK TOO MUCH WATER OR YOU CAN WASH YOUR SODIUM OUT BUT JUST A GOOD AMOUNT AND STAY HYDRATED. TALK TO YOUR DR ABOUT IT AND SEE WHAT HE SAYS

[AndrewT in reply to Bassetmommer]

I couldn't agree more..... you can Worry yourself to Death 'Reading The Net'! Personally I have only heard of, about three, Complications- one a lady who had Multiple Problems, and did ulitmately Die. The other someone who Ended Up 'Back on Dialysis' but is still- very much- Alive today. The third 'just' required some Extra Medication, to Stabalize him.

By the way 'fartikins' I just LOVE your 'Name', mind you it could Apply to me too!

Do 'Talk' to your own Team and DON'T keep Reading 'Things'!

AndrewT

[fartikins in reply to AndrewT]

Hello - thanks very much for that - I was born worried.

[Sammi_n_Munk]

Hello fartikins. You weren’t kidding! I just looked it up online (link below). The frightening thing for me was, I had similar type skin ulcers that were described in this link, years ago when I was almost near death (this was before I was diagnosed with kidney disease). Luckily, I had fallen in my bedroom and was too weak to get myself up and wound up in the hospital. They were able to get everything in control, but it was definitely life-changing. It’s all been about diet and exercise changes, and maintaining a sufficient nutrient balance ever since. I thank you for bringing this to our attention. They never did tell me back then what was actually going on with those ulcers. All they would tell me was that my kidneys were damaged, my potassium was off the charts, and I was low in practically every mineral. Thanks again. So much appreciated. God bless. 😊👍🙏

mayoclinic.org/diseases-con...

[fartikins in reply to Sammi_n_Munk]

Oh bless you for that. I had never heard of it either but I came across it while looking for something else. I am so glad that it has helped with your condition - anything we can do to make ourselves a little better is a miracle.

[Hidden]

Please do not consult FACEBOOK for medical advice. Step away from your computer. Watch a silly movie on Netflix. Stop thinking about your kidney disease for a few hours. You have to relax about this, stress will make it worse. Breathe. Sending peace.

[fartikins in reply to Hidden]

thank you for thinking of me

[Hidden]

Don't let this disease be all-consuming, live your life! I know it's so easy to focus on all of the bad stuff, but you really have to pull yourself out of that even for a few hours and do something different, like I said, watch a silly movie, binge-watch a series, go for a walk, exercise, try yoga maybe, if you can? Cook a nice meal; focus on the preparation, and make it a joyful experience, learn to enjoy and be mindful of the simple things in your life. Take up a hobby, do you bake, baking bread is a beautiful hobby, even if you can't indulge, you can gift it, but it's really a fun project. If that's not your thing, find something else, anything that gets you out of your head. Find something to keep yourself away from the screens and Dr. Google and for god sake Facebook. I know from experience, that they are not going to help your mental state whatsoever. Take care of yourself.🤗

[fartikins in reply to Hidden]

Thank you so much for your kind comments. I visited the garden centre this afternoon and got the roses I want. I feel better for it.

[Hidden in reply to fartikins]

So glad you mentioned gardening! I am just planting my herb garden, nothing compares to growing something to make you feel alive! Enjoy your roses, I hope you both thrive!