O.K. I'll Introduce Myself

[Runningjb]

My FSGS was initially diagnosed when I was about 29.  That was 32 years ago.   I was told this was an incurable, progressive disease, that sooner or later my kidneys would fail, and it could happen any time.  Well, It happened 5 weeks ago.  I was in the middle of a round of golf and I simply cratered.  I made it off the course, and within a couple of weeks a permacath had been installed in my neck/chest, and a fistula created in my left wrist.  Today, I completed my 10th dialysis session - enough to certify me as a true Dialysis Hater.   What's the line from Vacation  "If you hate it now, just wait . . ."

The concept of being tied to a machine 3 days a week is antithetical to my lifestyle.  I considered myself a life-long athlete.  I was a 2 sport athlete at a major university.  My first career was as a professional competitive swimming coach, with all the intensity that entails.  I have been an expedition mountaineer, a tri-athlete, a certified SCUBA diver since 1959, and have had many great adventures.  I carry a 5 handicap and average walking about 120 rounds of golf a year.   My wonderful, beautiful wife of 26 years and I own, of all things, a very successful medical insurance brokerage company here in West Texas.  We have 2 children, 3 grandchildren and a black standard poodle, and we are 3 months into the construction of our dream home, which we designed.

Now, I have kidney failure.

Curiously, my most profound emotion about my circumstance is relief.  Every day for over 3 decades I wondered if this would be the day my kidneys failed.  It finally happened, proving that problems do not go away, they just morph into something else, but that's a topic for another post. 

It has not hit me that these 3 x week dialysis sessions are my forever, and just how they are going to impact me and my family.  Having strived so hard all my life to be independent and competent, its difficult to comphrend needing a maching to avoid a slow, agonizing death  (or, perhaps more correctly, that causes a slow, agonizing death).  So, it was with relief that I came across this website which is the only place which seems to deal realistically with the issues my family and I will face.  (Is anyone else put off by the National Kidney Foundation?  It seems like "just so much fluff".  What does that organization do, anyway?)

This is my very first post to a website, ever, so I'm at the bottom of the learning curve.  Please forgive any violation of protocol.

Runningjb (my cattle brand)

[willieandwinnie]

Runningjb. You will fit right in around here. Tell your wife to join also. We are a great group with loads of information and all kinds of support when you need it. I'm sorry that your kidneys couldn't hang in there any longer. Have you looked into a transplant yet? As far as the NKF, they are doing alot better now then they were 7 or 8 years ago, that's all I'll say on the subject in this thread. Again  and keep posting. 

[monrein]

  to IHD.  I look forward to hearing more from you here and I trust that you'll learn from our collective experiences as well. 

[peleroja]

Welcome aboard.  Come back, post often and let us know what's going on in your life.

[paris]

   I also have FSGS.  There are quite a few here with FSGS, in different stages.  This is the best site on the internet for kidney diseases.  Our local director of NKF recommends IHD to patients.   You will get straight answers here, but you will also get a lot of support for both you and your wife.  This is a tough disease on families, too. There are many spouses and caregivers here that could be helpful to your wife.  You posted a great introduction and we look forward to hearing more from you.  Let us know how you are doing on dialysis.  Ask any questions you have.  There is more answers here than the doctors could ever give you.   Glad you are here.  You are amoung friends   





Paris,moderator

[boxman55]

Welcome to IHD. your post was very good and I look forward to more. Knowing your going to have too and then having to do it (dialysis) is hard to get your hands around at first. We are here for you

Boxman, Moderator

[Romona]

 

[Joe Paul]

Welcome Runningjb, good to have you aboard.

[Ang]

 

[kellyt]

  Runningjb!  And "Welcome" from another Texan (South Texas).  What a great introduction.  Very well done for your "first post ever".  This site has been a God send for me.  I happened upon in in late September 2007 just before I had my first fistula surgery.  I have learned more in the last year from this site than in the 15 years seeing my Nephrologist.  This is not to say that my Nephrologist isn't wonderful (I mean, he's kept me off dialysis for 15 years when he thought I'd be on in around 5-7 when diagnosed), it's just that I had no idea what to ask, what to look for, what I should know, etc.  You will find all of that here.  However, as you are already on dialysis you are ahead of me.  I'm still holding on, but am seriously close.  I plan on doing incenter nocturnal.  I look forward to hearing more from you and hopefully your wife.  Tell her to join us, as well.  She will not be sorry she did!!!!

Oh, you mentioned that dialysis is your "forever".  Do you not plan to get on "the list" and try for a transplant?  Some don't and I understand.

[Zach]

Good to have you with us.
 

[drinkboy]

Welcome aboard!!  This is a great place to share stories and information, and everyone is very supprotive.  I'm sure you'll find this site very helpful in many ways.

[lruffner]

Welcome runningjb!

I have FSGS also, stage 4 and playing the waiting game. I would love to hear more, so come back often!

[Bajanne]

Welcome to our community!   What a lovely intro!  Our founder Epoman (of blessed memory) would have loved it, and I did!   This site was created to provide an honest open community  where people would be free to tell it like it  is and to help each other.  I myself came upon it when I was diagnosed, and just days before I started dialysis.  I cannot tell you how this site  helped me through those first scary days.  The site was only one month old when I joined and I still contend that it was developed especially for me!  I just checked the date and this is the exact day that I joined - September 22, 2007 (gotta go post about that)
So please read as much as you can (Information is Power!) and post just as much.  We need to know how you are doing - not nosy, just family 


Bajanne, Moderator

[Wallyz]

Welcome, JB 
I, too, find the National Kidney foundation underwhelming. 

You are right, it is daunting.  It's taken me some time to get to a point where I knew enough to take back my independence.  I have done that mostly through moving to home hemo,and educating myself.  With those two steps I have been able to move from a dependent patient to a more independent person on dialysis (at least in my own mind)

Good luck, and post pictures of your place, with cattle and that porch I am imagining it to be beautiful.

[devon]

Welcome Runningjb!

You certainly came to the right place.  I hope you find as much support here as I have.

-Devon

[Run8]

jb , i am fairly new to this site. There are lots and lots of info here i think you will find what you need here to help deal with you situation. There are many oppsitions out there including home hemo, witch is on your time and your schedule. nice to meet ya

[Wayne]

  aboard!  I am also a fellow Texan (representing the North side), love golf, and also have FSGS.  I am in stage V...haven't started d yet but getting close.  Great first post btw!   

[Lucinda]

Welcome aboard JB....   You will find everyone here a great support!!

[aharris2]

Welcome to IHD JB, is good to have you onboard, please feel free to ask any questions you see fit. We're here for each other.


  again

Alene n Rolando