Getting on with life

[MooseMom]

Yes, I do have a transplant coordinator who I like a lot.  But the transplant center is in Chicago, and I live about 40 miles due west, so I am getting all of my testing done locally.  Since I have to be on an HMO (due to the whole "pre-existing condition" palaver), all of the referrals have to go through my PCP, and I don't think their referrals department is really on the ball.  This is the first time I've been through the pre-transplant testing, so next year when I have to do this all over again I will be much better prepared.  No wonder health care costs are so high...there is as much admin staff as there are physicians in most practices.

I'll survive, but I have to complain a bit first.

[mamanan62]

I am pretty new here at IHD and to Dialysis. Only been on D since Nov. of 09 and I can relate to everything you all have been going through.  I had many of my "pity party's'" with invitations to 1 (me).  But maybe it not a "pity party" I've been having.  It sure sounds real coming from you!!  I didn't think dialysis was really helping me that much.  At first, besides having problems with my fistula, I cramped really bad, my feet, calves, my back any thing that could cramp did!!   But finally now, approx. 6 mos later I really am starting to feel better.  They finally found the right "profile" for me and we are able to take off almost twice the amount of fluid as before and no cramping. And I seem to have a little more energy and I don't feel quite so useless.  They are not big improvements but they give me hope!!   That's my light at the end of the tunnel I see.  It's not much but its more than I had, and it makes me happy. 

I want to thank everyone for their support when it was "my night to cry"  Thank you, you are all awesome!!!

[MooseMom]

Mamanan62, thank you for reminding me that dialysis is as much art as it is medicine.  They call it "the art of medicine" for a reason.  I understand that it takes time and patience to find just the right treatment for an individual patient, and I am so glad that you and your team have hit upon the right combination of things that make D work for you.  I'm sure your life is much more liveable now.  Even if an improvement is not "big", it can still be enough to transform your life.

I did make a mistake recently, though.  I spoke about this earlier; I emailed the volunteer coordinator at the local hospital where I've volunteered for 2 years.  I explained the situation and asked if there was some small way I could still be of help despite certain constraints.  I got a reply; she said that they were looking for more support staff in the office and that she would get her assistant to call me.  Well, I never got called, and it has made me feel kinda bad.  I remember how I felt when I was told I could no longer donate blood or buy life insurance.  These were small things, but they make me feel useless and lumpish.  I feel the same way now.  But it was my fault for setting myself up for disappointment, so this is what I get.  Maybe I can find some other volunteer opportunity somewhere else.  I had trained to be a literacy volunteer, but I had to give that up because since it seems that I might start dialysis any day now, I didn't feel right about making a commitment to someone.  A literacy volunteer is an important part of a person's life, and I didn't want to have to let anyone down.

[lunadatura]

My advice is figure out some hobbies that you like that you can still do and then find folks to do them with. For me its drawing, writting, reading, knitting and sailing - i cant ride my bike or dance but i can do these things. Try www.meetup.com or craigslist to find new friends with common interests. Also my church has been a big source of connection - i actually now rent a room from a friend from church rather than live alone.

Isolation is a big problem and you are smart to fight it.

[MooseMom]

Those are some really good ideas, luna!  Thanks!

[kitkatz]

Oh sweetie. I have no words....
All I have tonight is a hug