I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: Storrs on April 27, 2015, 07:06:54 PM

Title: My ESRD story
Post by: Storrs on April 27, 2015, 07:06:54 PM
Yup what a day it was to start pd  April 1st  2013... But it actually started sooner with the neph and the port ok I will start at the beginning very long story...1 am now 50 years old
 
I was born with one kidney so my medical issue is totally congenital just my luck of the draw I suppose and to top it off I did not know until I was 18 years old going on a physical with intention to join the navy I wanted to see the world. Why did they not find out with other physical or doc visits is beyond me .This physical found too much protein in my diet. After alot more test I was told  you only have one kidney ..only advice I was given at that age was to maintain a low protein low , sodium diet.  This was in 1982 so basically I never talked about it much I wanted to be and feel normal .  I did not want a pity party.

So fast forward to 1992 I had  graduated from college  by now and found that even with a 4 year college degree major psychology and minor sociology I would never be able to be a cop my second dream in life, first one was to join the navy see the world..So I worked with troubled youths ,the pay sucked so bad when my old boss that owned a restaurant called me back to be manager of his restaurant at double my pay the state was paying I had to go back my car was 9 years old and breaking down a lot it was a Ford Mustang 1983 with a lot of miles  I went for the money and restaurant work is second nature to me i had over 10 years experience by that time in life..as a manager....all was good with my health this entire time but since I had good job with great insurance...of course my doctor wanted to know why,what, how ,when ,where , ect I let her run all the test she wanted til her heart was content but only to tell me same result yes you do only have one kidney but that kidney is 11.5 centimeters in size is a normal kidney 

Fast forward to1999 there was a lot of insurance changes going on so I had to change with the flow this time I was seeing a new primary doc and she was like you really need to see a nephphologistt so off I went to  Dr Antonia Hartford  she runs tons more test ... Puts me on blood pressure medicine and  claims that will take pressure off your kidney ok I believe her am brainwashed and I take that pill everyday and let other neph to increase it because guess what now I have high blood pressure....so just keep giving me more  and more stronger dose when I went to see doc in 1999I was at 47 percent kidney not bad since I only had 50 to start life with !!! 

My theory is blood pressure pills actually gave me high blood pressure but what do I know my primary today says no I would have eventually had high blood pressure and my neph believes same thing only this part gets really weird ok since 1999 I am on blood pressure pills ace inhibitors ok you folks that know more about ESRD know there is a big debate about ace inhibitors ..... So my primary tells me my blood work is showing ESRD she does not take no from me this time I did bully her before  said I feel good I am fine let it go run more blood it will be better we know how to make blood work look better get rest and eat healthy always did the trick before. But for some reason my last blood work she really wanted me to see specialist so to make her happy I relented and made my appt with my current neph whom I adore so if I sound negative it really only is because I hate dialysis just like everyone else

My current neph which I really should have questioned more but just let it go because this lady gave me the kick in the ass I needed I saw her in sept 2012 by March even before my first dialysis treatment I was already listed .... It sounds easy now but it was a whirl of events to first day do dialysis to begin with our first visit she took me off ace inhibitors said if I keep taking them I will be on dialysis in a month ok instead of 8 months?? Anyway go back in a month still ugly blood work showing ESRD go back second month ESRD blood pressure up abit still not on blood pressure pills 3rd month I am sick as a dog can't breath go see a friend of my he is a chiropractor tell him I am sick he takes my blood pressure tells me either go to ER or go see neph but blood  pressure can't get higher or I could stroke out ... I leave with my S/O and we go see neph no appt just barge in the door LOL but she does make time to see me and says I think your having a panic attack but I say no I don't have anxiety this is in my lungs I can't breath....low and behold X-ray she has me take says liquid in my lungs now she puts  me on blood pressure pill, water pill and several more vitamins...the water pill worked it magic I was able to return to work imediately Yes I sill work full time ... I will add more later because as we all know there is more to dialysis  and I am tired but it does get good my neph and I fight over when to start pd she wanted me to start today in 2012 I did not start til 2013 I had trips planned and damn if I am going to break plans is not cheap to change flights lol  I stood my ground and I think that is why she likes me so much now we share photos of vacations together, she shows me photo of her son  anyway I need to post now or I never will
Good night
Title: Re: My ESRD story
Post by: SooMK on April 28, 2015, 06:47:50 AM
Welcome Storrs!
Title: Re: My ESRD story
Post by: Rerun on April 28, 2015, 09:04:13 AM
Nice intro Stoors.  Welcome, and I'm so glad you found us.  Lots to read on this site, so join in on the conversation.   

Welcome - Rerun, Admin.    :welcomesign;
Title: Re: My ESRD story
Post by: cassandra on April 28, 2015, 02:21:50 PM
Welcome to the site Storrs

    :welcomesign;

Take care, Cas
Title: Re: My ESRD story
Post by: Bambino_Bear on April 28, 2015, 07:24:41 PM
 :welcomesign;

My husband was also born with only one kidney.  You would think with only one, they would make the one you have good!   :rofl;
Title: Re: My ESRD story
Post by: Jean on April 29, 2015, 01:44:15 AM
 :welcomesign;   to IHD. Glad to have you join us. You sure have gotten a big run-around, haven't you? Hope it gets better.
Title: Re: My ESRD story
Post by: Athena on April 29, 2015, 06:15:54 AM
Welcome Storrs. That was an interesting story of your experience. I don't know what the controversy seems to be with ACE inhibitors that you referred to. If you can fill me in on this, I sure would appreciate it, as I am on a fairly high dose ACE.

It's nice to have you on board! Take care
Title: Re: My ESRD story
Post by: PaulBC on April 30, 2015, 02:16:53 PM
Are there any concerns about lisinopril? It's an ACE inhibitor according to what I have read. I have seen the warnings about birth defects if taken during pregnancy. Anything else?

It definitely lowers blood pressure, and our doctor claims that it will help increase albumin levels, but I don't understand the mechanism for that. Originally, I thought it was just in case dialysis wasn't sufficient to keep blood pressure down, and then it kind of switched around to where the point was to take it when possible and only avoid it if BP was too low.
Title: Re: My ESRD story
Post by: cassandra on April 30, 2015, 02:24:05 PM
I thought with ACE inhibs that if there is still urine production you might loose protein through that, and ACE inhibs make the glomerli in the kidney smaller so that protein is less likely to leak out, so the protein (albumin) in the blood won't drop further. But I might be wrong

     ;D


Love, Cas
Title: Re: My ESRD story
Post by: PaulBC on April 30, 2015, 02:28:39 PM
ACE inhibs make the glomerli in the kidney smaller so that protein is less likely to leak out, so the protein (albumin) in the blood won't drop further. But I might be wrong

That makes sense. The other claimed side effect was that potassium might increase. I wonder if this is also due to less clearance in the glomeruli. In a couple more weeks we will do additional bloodwork and find out.
Title: Re: My ESRD story
Post by: Darthvadar on May 26, 2015, 11:51:46 AM
 :welcomesign; to IHD...

Good to have you on board....

Darth... Moderator....