Hi, my name is Mary. Im new and scared

[lilly5860]

I started with chest pains in 1987, went undiagnosed for several years. Living in the Upper Pennsula of Michigan, there wasn't alot of up to date medical care. I was told it was my kidneys but I was too overweight to do a biopsy. !988 I moved to Illinois. That summer I fell off a horse and was in a coma 10 days, rehab hospital 6 months. They disover ed lots of protein in my urine. ( I had run high protein for all 4 of my kids) After several years of rehab, I was sent to a nephroligist. I was diagnosed with focal sclerosis in 1997. I continued to see him twice a year. I was divorced in 2006 and have gone downhill from there. In the last 3 months, my creatinine went from 2.4 to 3.75. I have been having tests, lots of them and I'm set to get my fistula put in on the 6th. After my divorce, I exercised, lost 90 pounds and got in great shape. Now, I'm reading that I have to change everything I eat. ugh I'm overwhelmed. Started to do the transplant stuff then put it on hold as I am going to try to move in the spring to Rockford Illinois witch has more services. I had found this site a few years ago and bookmarked for when I needed it. Boy am I glad I did I'm 51 years old.

[kevinswife]

 

[boswife]

  Mary    Being here and reading and chatting will help UN scare you.  It's no picknic for sure, but it is so doable... Hang around and ask lots of questons till you feel a bit beter about it all.  It WILL help...   

[willowtreewren]

Welcome, Mary.

The diet can be daunting at first, but like anything else, once you get used to it, it is doable. Reducing salt is hard at first, but your tatse bud adjust!

What an accomplishment to lose 90 pounds. You go, girl! Congrats! 

We are here to help. Read through the threads for information and if you don't find what you are hunting, just ask!

Aleta

[Joe]

Hi there Lilly, and  ! Hope you find a lot of good information on the site.

[kellyt]

Welcome Mary!     Even though you are scared (and rightfully so) rest assure you have found the absolute perfect support group.  You will find yourself more and ease every day you come here.  Good luck with your fistula on the 6th.  I was super nervous about that, but it was really nothing.  I had it done twice in a little over a month's time, as my first one didn't work.  Work your arm with the exercise ball and make that fistula big and strong.  I look forward to hearing more from you.  I'm in Texas.

[YLGuy]

  welcome! Glad you bookmarked this site and found your way back.

[MooseMom]

Hi there.  I was diagnosed with your same renal disease, but I was diagnosed in 1992.  I didn't pay a lot of attention to it for all kinds of reasons I won't bore you with, but in 2004, I found out how bad my kidney function had become, and I had a fistula created in April 2010.  So, my story runs a bit parallel to yours although mine seems to be set a bit in the future!

Yes, the renal diet is a major butt pain, but you've obviously had to change your diet in a major way before (in losing 90 pounds), and I'm sure you can do it again.  The real difficulty is redefining what is "healthy".  There is definitely such a thing as eating too much fruit and veg if you are a kidney patient!  Bananas can kill you!  Seriously!  Isn't that stupid?!

Anyway, I've been where you are, so let me know if I can help.  BTW, I live in Chicagoland, so I'm not too terribly far from you. 

[Poppylicious]

  Mary.  Well done on the 90 pounds weightloss; that's a major achievement!  This site is full of love and support and advice; you'll love it here.

 

[Rerun]

Hi Mary, so glad you found us years ago and that we are still here!  This is a wonderful site.  You still have time.  A creatinine of 3.5, if it stays there is okay.  You probably need to not eat high potassium foods in case your kidneys are not clearing that out.  Lots to learn, but you can do this.

Hang in there.

Rerun, Moderator        

[Traveller1947]

Welcome, Mary!  There's no need to be scared.  You've overcome so much so far, and with the support of  the good people on this site,you'll learn what you need to know to be able to deal with this too.  The pre-dialysis diet is basically low protein, low sodium and low potassium.  The diet once you start dialysis is HIGH protein, low sodium, low potassium and low phosphous.  Not an easy diet, but doable.  All the best to you on your journey.

[fearless]

Mary, I call myself fearless because that's how I like to think of myself.  But I was so sh*t-shakin' scared when I finally had to go on dialysis, that I thought it was the bitter end.  But I'm still alive, 8 years later, and probably 20 years post development of the disease (I was also undiagnosed, and I ignored my symptoms for years)
The remedy for fear is faith: find whatever it is you are able to place your faith in, and then cultivate it whenever the fear crops up.  (that's my humble advice, offered with the utmost regard)   And for what it's worth: finding someone who you know has your best interests at heart will help sustain you through the upcoming challenges - a family member?  a long-time friend?  or many of those here....

[jbeany]

Having done dialysis in St. Iggy for a while, I can certainly agree with you on the lack of available care for kidney patients in the UP!  My neph up there covered everything from the Soo south to Petoskey.  Dr. Shaw was good, but there was only one of him!

 

jbeany, Moderator

[BriarRose]

Don't worry so much about the food.  the Dr. Can give you binders and you can figure out your fluid intake. Take it one week at a time and you will find the right routine.  I know it's scary but with time it does get better

[Ravenwolf]

    And may God bless all your efforts.

[Riverwhispering]

  Mary,   Glad you have you in our IHD family.  Congrats on losing that weight... how did you do it? 

River

[ToddB0130]

Hi Mary --- welcome aboard (sadly !).  I hope you find everything here you're looking for.  There's certainly plenty of information and lots of folks to help you who will share their experiiences.   Scary is the right word for all of this.  Keep learning and asking questions.  Knowledge provides power and control and the better you feel about the choices and options you have,  the less scary it will become.

[lmunchkin]

Sorry Lilly, dont know how I over looked this intro, and late responding.  My computer was down for awhile, but been back on site for a couple weeks now, sorry Im late.

Welcome though, and thank God indeed you bookmarked us.  Wish you did not need us but glad you came back and found us!

Again Welcome & God Bless,
lmunchkin