Introducing myself

[fuzzyL]

I am 52 year old male-name is Larry-I do not have diabetes-when I was very young, one of my kidneys was removed for some medical reason so I have existed on one for all these years so now doc says it is failing and it a month by month checkup until I need to start dialysis-I am hoping to at least make thru 2010 before starting-I wanted to do it at home but I had three stomach hernia surgeries and doc does not want to go thru my stomach-they tell me they do have home hemo machines-and i have the good fortune to be married to a RN-of course I do not want to do it-who does-I have whined and yelled and even cried with my wife over the news-and now i have to find out what my ins will cover and if i can get help from medicare and if I can do this and keep my job-I had a friend who had stomach cancer who eventually passed on--the treatment made his life miserable--what good are treatments to keep one alive if the quality of life sucks?

[boswife]

  fuzzyL, or Larry    Sorry you have to join this club, but really, once you get to feeling better because of treatments, you'll not look at it so terribly......hopfully    Hubby's the one on D and we're preparing to start home Dialysis training in about 3-6 weeks.  You should look under the Home Dialysis, and the NxStage area of our forum.  Great info there.  We're actually really looking forward to home D and feel it is the best decission for us.  All the best, and get aquainted here.  YOu'll be amazed at how much better your outlook can be when you see others in your same situation, and making it... 

[peleroja]

Welcome to the group, Larry.  As for quality of life on dialysis, I think it's all about what you make of it.  I have good days and not so good days.  I still travel with my travel group, and I run a renal support group here in Southern California.  Do what you can and don't worry about the rest!

[VintageVera]

FUZZY LARRY: I'm still new to all this myself and finding quality of life is definitely a challenge. But dialysis has come such a very long ways since the days that I was a girl and watched my uncle in his dialysis trailer. I think having support is absolutely necessary and it sounds like you have that. BEST TO YOU, VERA   

[Bajanne]

Welcome to our community, FuzzyL!  Kidney failure is the pits!, but as others have said, it depends on how you deal with it.   I completed my 5th year on in-centre dialysis and though I have lost a lot, I have also gained a great deal. For starters, my wonderful IHD family!    and now you are a part of us! 
 This is just the place for information, support and encouragement.  Just keep reading and keep posting.  Let us know how you are doing.




Bajanne, Moderator

[galvo]

G'day Larry and  .

[monrein]

 

[Rerun]

Larry, Medicare will start immediately if you say you are going to train for home dialysis with the machine (since you cannot do PD) otherwise there is like a 3 month waiting period.  Medicare is secondary if you have other insurance for 3 years then it flips to Medicare primary and your insurance secondary.  Go online to Medicare and look up Kidney failure and dialysis and read.

Sorry you have to look into this.  But, you will do fine.  Just a lot to learn and you don't want to learn it in the first place so it sucks.

Best of luck!

Rerun, Moderator       

[rsudock]

hang in there larry! u will adjust to dialysis it just takes time! im starting my 4th month ever!

welcome
xo
R

[Desert Dancer]

Hi, Larry -

You may have heard there are quality of life issues on dialysis.  This is true, but a very large part of that depends on things like which modality you use. Many (most?) of the horrendous statistics you hear about are based on the conventional, 3X per week in-center model. You already know you don't have to fall into that model, since you mentioned your awareness of home hemo. Some modalities (such as nocturnal home hemo) are equivalent in outcomes to a cadaveric transplant and have little impact on quality of life.  Arm yourself with knowledge and come out fighting! 

This is not to say, of course, that dialysis is not a gargantuan adjustment. It is. But if you educate yourself and advocate for yourself, there is no reason it has to be a devastating adjustment. You can do this! 

[fuzzyL]

thanks for the input--question--if you get hemodialysis-can you travel and how--my wife and I like to drive to different places and often will spend one or two nights in a hotel--do we have to give that up--I believe in doing what one can to keep living but what about the quality of life-I had a friend pass from cancer-the treatments were bad for him--want is the point of going on if the quality of life sucks

[chook]

  Larry. I live in rural Australia and do PD so can't give you info from my own experiences re travel on haemo. However, recently my local town had a reunion for old bands and some went back years, to my school dance days, so we're talking 30 to 40 years. One of the band members that travelled out for the reunion had just started haemo and has set himself up in a specially adapted horse float and plans to continue his travels that way. Different, ah? It seems to be sucessful so far, so good on him. 'Old rockers never die: they go on dialysis and travel in horsefloats'

[natnnnat]

I know of an Australian dialysor who has set up a caravan with a haemo machine in it. 

[Jean]

Hi Fuzzy and     to IHD.

[sarahmanda]

I'm new to this myself, but as a rather young person traveling was important to me.  You can find other dialysis clinics (its best if they are the same 'brand' as your home one - like mine is FMC) and set up appointments to dialyze there.  If they have a free chair (or bed or whatever) they can squeeze you in.  As a matter of fact that is what I am doing for Thanksgiving.  There is a clinic in the town where my parents live and I will be using there services the day before and after Thanksgiving since I will be at my parents rather than at home.  The other clinic has been rather accomodating (it probably helps that its a relatively small town and everybody knows everybody).  I hope this helps!!!

Sarah

[fuzzyL]

Thank you--it sounds corny but it really helps to see this site and share what everyone is dealing with