Observation - topic of death

[MooseMom]

Well, maybe I'm just wired differently because I am not on a journey, rather, I am in a battle.  I'm not floating down the placid river of CKD, I am engaging in hostile activities against it.

I had to fight to get my son the best education so that he could have a good life despite his disabilities.

I've had to fight to be educated, to choose the best for myself so that I could continue to support the people in my life who need my help.

I am choosing to fight for patients who don't have a voice and even if they did wouldn't know the first thing to say.

I know I can't fight death, but I can fight for more life, and that's exactly what I intend to do.

[paris]

Guess it is just the use of the word.   I wouldn't be where I am if I weren't a fighter.  I have questioned every step of the past 10 years.  My neph had never had a patient with a 100% PRA.  So, he researched and I researched.  I knew every question to ask, who to ask, and how to make a fuss if I didn't like the answer.  I was one of the first at our center to do IVIG and Rituxin infusions to improve PRA. I had been bugging them for 3 years about when they would offer it. In the meantime, I was listed at Johns Hopkins and Carolina Medical Center, both were doing the infusions already.  I think we are all fighting like crazy -- we all are in a huge battle.   But I think I have more knowledge now, than 10 years ago.     

I don't think many of us are just bobbing along drifting down the river.  I am been in the rapids, portaged the canoe, fought the elements, and still moving forward. This isn't over for me.  I am so grateful for this unexpected transplant, but I knew the first month that FSGS was already effecting the new kidney.     I think I was just trying to say that journeys aren't just pleasant happenings.   We crashed landed in Chicago a few years ago.  Braced for landing, fire trucks lined up, foam on the runway -- we had blown all tires on take off from San Francisco.  We were on vacation -- a journey, yes, but that part wasn't fun. Husband was with airlines for many years, so we had several "exciting" experiences with planes.     Being an advocate is wonderful.  Our family has been deeply involved with the NKF for several years--volunteering, raising funds, interviews, etc.  My daughter is doing a radio interview reagarding NKF next week.   We are fighters.     So, we just disagree on the use of a word.  We are still in the same boat (oh no -- boats go with rivers!! LOL!!)     What most don't know is that I gave up hope last summer.  Took my name off two of the centers lists.  That lasted a couple of months and I kicked myself in the rear and told myself to "get over me" -- live!  And the battle countinues, the fight is not over, and hope springs eternal.

[noahvale]

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