just starting this leg of my journey - Early CKD Support

Early CKD Support

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just starting this leg of my journey

kel55 profile image
2 Replies

Hi, like the title says im just starting, Doc recons stage 3 (53 and 54) and im now awaiting results of pee test. He showed me were over the last few years l have got lower until this time when it remained the same since Jan.

Im not panicing as l have read that im just on the edge of needing help with this but its just another condition to add to the list.

I have a disease called Cardiac Syndrome X (also called Vaso spasms, microvascular disease prinzemetal plus others) basically my arteries close stopping blood supply down stream. l didnt know about my CKD until a few months ago and l dont know were one of my diseases start and another finishs. Also imon a lot of meds.

So l have CSX in my heart, head, abdermon and skin and recently l have found out l probably have it in my Bladder because everytime l spasm l leak. I have had CSX in my spleen and l had it in my pancreas, so they took my gallbladder out to try and stop thinks happening again.

I do have some of what l think are symptoms, my pee is dark brown and it smells of what food ive eaten or like old age pee, if that makes sense. I also get pain in my lower back ( both sides ) and at the front in similar positions.

I also have 2 adreanal adenomas, both benign and in active but im not sure if these are auything to do with if?

And im male just passed 60. My BP ranges from 80/50 to 168/102 and my total colesterol is 5.25 so they want down under 4.

As you can see it is all confusing so l am asking questions to try and rationalise it out/understand it, in my own mind

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kel55
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MAS_Nurse profile image
MAS_Nurse

Hello Kel55, you do seem to have a lot going on with you right now. Also I can see that you are looking for answers in various communities. The members are very supportive however as your needs are very varied and complex it may be worth while waiting and speaking with your consultants. Are they going to have a multi discipline team meeting as your case is so complex? Perhaps then you could come back to the groups you are members with and ask questions, and perhaps let us know how you are getting on.

Best wishes and keep in touch with us.

Regards,

MAS Nurse and Moderator.

kel55 profile image
kel55

as far as l know there is no team just individual consultants doing their bits and claiming their own area as the controlling or only factor.

you are correct when you say looking for answer where perhaps there are no answers, yet.

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