I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: willowtreewren on May 17, 2009, 01:45:31 PM

Title: Just Lucky?
Post by: willowtreewren on May 17, 2009, 01:45:31 PM
I met a dialysis nurse today at a gathering that had NOTHING to do with dialysis. We got to talking. Once again it struck me how lucky my husband and I have been on our dialysis journey.

Many years ago when he was diagnoses with PKD he started seeing a nephrologist here in the metropolitan areas in which we live. We didn't think much about it and we didn't do any particular research into who to see. My husband's primary care doctor recommended this guy is all. So, once a year Carl trooped into the city to see his neph and his urologist (another recommendation).

Then it was every six months and then every three months and then, well, dialysis. Again, we were just going with the flow. "Our" neph worked out of a particular dialysis center, so that's where we went. We actually had a choice of two centers, equi-distant from our home. One was closer to work, so we picked that one. It had more stations, too, and the NxStage home section. It turns out that our center is a non-profit privately run center. It is not connected to Davita or Frensensius. It may not have all the bells and whistles of some of the centers I've read about, but the quality of care is great. Even the nurse whose personality rubs me the wrong way is very good at her job.

The point is, that we "happened" to get this clinic through serendipity. The same is true for my husband's vascular surgeon. He is the best in town (we have heard since my husband got his fistula). But we did not have anything to do with choosing him. He was the surgeon recommended by our neph.

In talking with my new acquaintance today and hearing about some of the other dialysis clinics in the area, I am more and more convinced that our dialysis journey could have been very much different.

We are not uneducated. We are not uninvolved. But we were certainly naive about dialysis (even with having it in the family). My attitude is now very different (thanks to IHD). I will be very much more proactive in all the choices facing us in the future.

But I still feel extremely fortunate for where we are despite our not knowing how we were going to get here. It's good to know that we will have a better road map for our further journeys.

Aleta
Title: Re: Just Lucky?
Post by: MandaMe1986 on May 17, 2009, 02:29:32 PM
Sometimes you do just get lucky.  When I first got sick my mother worked at the hospital I went to.  So she made sure I saw the head of the neph dept. Everyone hated him cause he was an ass to all the other employees.  But you know what the ones who really got to know him and work with him closely knew it was all for his patients.  I couldn't have asked for a better doctor when I first got sick. He taught me so much right off the bat. I knew where my problem was in my kidneys and what was causing it.  I knew what kind of diet I needed to fallow and why.  I owe everything that has gone good with my heath to him.  And I think I am just lucky.  I could have been at another hospital and never had him.  Sometimes Luck is just on our side.  :cuddle;
Title: Re: Just Lucky?
Post by: Hanify on May 20, 2009, 02:31:56 AM
I still think of myself as lucky.  I have a lovely husband and daughter, and my family and job is so supportive.  Also, I'm damn lucky I am living in 2009 - not too many years ago and my cancer was a death sentence.  It's now one of the 'good ones' in that it's very treatable.  That's gotta be lucky eh?  Yes, the dialysis is a pain, but I thank God everyday that I am able to do PD, and that someone even thought of the whole thing.  Wow.
Title: Re: Just Lucky?
Post by: BobN on May 20, 2009, 10:56:44 AM
Aleta, I can tell from your posts that you are truly a caring and supportive partner.

I think your husband is the lucky one.
Title: Re: Just Lucky?
Post by: petey on May 20, 2009, 01:48:13 PM
Over all these years, Marvin has always -- and often -- referred to himself as "LUCKY."  Even when this comment was met with confused stares, raised eyebrows, and surprised looks, Marvin still contends he is a lucky, lucky man.  There have been many, many bumps in the road, many surgeries, many set-backs, many times when I thought this was just too much to handle, many treatments (Marvin will have his 2,000th treatment next week  :yahoo; .)  I have not always felt fortunate that ESRD was the disease that became Marvin's, and I've often wondered how any of this could be considered "lucky."  But, not Marvin; he still believes, through it all and in spite of it all, he's lucky.

I guess that just like beauty, being "lucky" is in the eye of the beholder.  It's all a matter of your perspective.  Aleta, just like my Marvin, I think you and Carl truly are lucky!  This is definitely a blessing, too!
Title: Re: Just Lucky?
Post by: monrein on May 20, 2009, 02:18:39 PM
I think that all of us who have managed to find this site can consider ourselves far luckier than those ESRD patients who are struggling in relative isolation.
Title: Re: Just Lucky?
Post by: Hanify on May 20, 2009, 02:58:10 PM
I think that all of us who have managed to find this site can consider ourselves far luckier than those ESRD patients who are struggling in relative isolation.

Hear hear Monrein.  Can't agree more
Title: Re: Just Lucky?
Post by: willowtreewren on May 20, 2009, 05:01:02 PM
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I still think of myself as lucky.  I have a lovely husband and daughter, and my family and job is so supportive.  Also, I'm damn lucky I am living in 2009 - not too many years ago and my cancer was a death sentence.  It's now one of the 'good ones' in that it's very treatable.  That's gotta be lucky eh?  Yes, the dialysis is a pain, but I thank God everyday that I am able to do PD, and that someone even thought of the whole thing.  Wow.

You sound like my husband, Hanify. He is always saying how lucky that dialysis is an option!  :2thumbsup;

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I think your husband is the lucky one.

Bob, I really think that in the partnership that is our marriage, I got the better end of the deal. My husband is so optimistic and upbeat, that it has rubbed off me over the years. It's hard not to be more positive about things when living with someone who just doesn't get too down very often (it HAS happened a couple times in our 40 years together, but very rarely).

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I guess that just like beauty, being "lucky" is in the eye of the beholder.  It's all a matter of your perspective.  Aleta, just like my Marvin, I think you and Carl truly are lucky!  This is definitely a blessing, too!

I think Marvin and Carl were just cut from the same cloth. People like them add so much to the world through their good natures.

Thanks everyone for your thoughts.

Aleta
Title: Re: Just Lucky?
Post by: willowtreewren on May 20, 2009, 05:09:27 PM
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I think that all of us who have managed to find this site can consider ourselves far luckier than those ESRD patients who are struggling in relative isolation.

And Monrein, tears sprang to my eyes when I read that. I certainly felt lost before coming here. And there are so many out there who don't know about us. I think of them as poor lost souls. I really feel for them.

Aleta