Hello from Seattle

[richbl]

Hello All,

Well, I'm here for the obvious: dialysis.

Originally from the suburbs of Chicago, but moved here to Seattle back in 1989 to work at a then-unknown software company in Redmond, WA (I'm an engineer when I'm not pretending to be my own doctor).

I'm 47, and was diagnosed with polycystic kidney disease (PKD) back when I was 15. Since then, I learned to manage my health through exercise and proper diet. At the age of 25, I went on blood pressure medication. Then around age 40, started the progession of extreme dietary restrictions to manage potassium and phophorus (sodium restrictions has been a given pretty much my whole life).

Earlier this year, at the end of June, I "gave in" and decided that my failing health had gotten to enough of a low that it was time to get on dialysis. So, on July 2, I started in-center dialysis here in Seattle, through the Northwest Kidney Centers (NKC). An outstanding non-profit, community-centered organization, by the way.

I continued with in-center dialysis for about two months: enough time to mature a button-hole access and learn to self-cannulate.

During the month of September, my wife and I did home hemo training for the NxStage cycler. Then in October, we began home therapy (short-daily, 5 days of the week).

More recently, we did an additional three days of NKC home hemo training to move to extended (overnight) dialysis using the NxStage cycler and a heparin pump.

Overall, feeling great. Certainly much better than I did back in June, and I have to imagine better than being dead (which in hindsight I was probably much closer to than I would ever want to be again, which is a very treasured insight).

I have to say that I'm very lucky to have lived with CKD for my whole life, as I really don't know any different. So, for me, it's been very easy to live a "normal" life dealing with health issues that might otherwise cause consternation: I just don't know any better.

And to that end, because I've lived with CKD for so long, I've treated it pretty much as an ongoing (albeit permanent) hobby. Some folks collect stamps for fun. I read clinical white papers on CKD research. Odd, but there you go.

And for the sake of my hobby, I'm also active here in the Northwest as an advocate for pre-emptive kidney transplant, particularly paired donation. I volunteer my time at the NKC, and it's still quite amazing to me that so few professionals in this industry are unaware of the option for paired donation (don't get me started on some of the jaw-dropping conversations I've had with care-givers who really should've known better).

Of course, I can't make the above statement without also noting that I'm a friend of Mr. Bill Peckham who I've regarded as my CKD mentor on numerous fronts. I'm very lucky to have him here in Seattle.

Going forward, I'm 1.5 years active on the UNOS deceased kidney list, and actively pursuing a living donor as well.

As concentrated and colorful as this life has been, and as much as I wouldn't wish this on anyone, I can't say it's been without its merit. I've really learned to appreciate what it means to live in the moment. Too many of my friends and peers seem to skate through their lives putting off important decisions for "another time." Time seems too much of a luxury to treat it in abundance. I'm happy to have even a moment of it and savor each as my last. I often ask myself "if I died today, would I have had a great, fulfilling life?" That answer is always, "yes, absolutely."

Rich

[MaryD]

Welcome, Rich!     

You sound as though you have just about everything under control, and that neck of the woods seems to be one of the best places in the US to be involved in dialysis.

Put off dying today.  I think you have many more fulfilling things to achieve.

[boswife]

Great intro ,, great attitude,, great friend ya have in Bill Peckham      I love to hear of these ups you have about the whole thing.  I am easly swayed into happiness and your post here gave me a lift   It is what it is and you certainly have made the best of it and it's good to hear..  Soooooo,    and hope you stick around and share your travels with us..  We too are nxStagers.  Just this month (two years ago) we were in training   Im so glad you have the opt for nocturnal espacially in your young age.  It's a GREAT way to go! (we're not doing it as of yet, but we shall see in time... were OK with what we're doing, but always interested)   

[MooseMom]

Oh, we all know about the wonderfulness that is NWC...and the wonderfulness that is Bill, too!  You are lucky in many ways!

Welcome to IHD.

It's outstanding that you've "graduated" to extended with NxStage is such a short time.  I wish all dialysis patients had the support you've obviously had.  There are people here on IHD who have to spend months and months and months trying to convince their center to let them do extended at home.  I hope you will expand your advocacy work to help those who are new to IHD and are not as well supported as you have been, so thanks so much for joining.

[Bill Peckham]

Welcome Rich, to the busiest CKD discussion board this side of Facebook.

[cassandra]

Welcome to the site Rich 

take care, Cas

[lmunchkin]

Welcome Rich.  Bill is a HUGE asset to this community.  Especially to NxStagers.  So glad you joined.

Again welcome & Jesus Is Lord,
lmunchkin

[RichardMEL]

Welcome to IHD, Rich!!! Great to have you with us!

I really enjoyed your intro post - thank you... ahtouhg I must admit I have had mySEA based friend drive through Redmond past the campus of that hardly-known computer thingy company and blow rhaspberries out the window  (and speaking of which, I hate the 8th version of such!) but I do not hate you and think your advocacy and willingness to learn all you can and advocate on such important topics is very important, and it's great to have folks like you out there fighting the good fight!

I  am sure you will be able to add much to our forum!

RichardMEL, Moderator