Getting Discouraged

[bette1]

I've been on the list in Chicago for 2 1/2 years and it seems sooo long.  I looked at the data on the web and the average wait time for my blood type in my region is almost 5 years. Yikes!@

[willowtreewren]

I understand how easy it is to get discouraged. I try not to think about the statistics too much. Each of us are unique individuals, right? So your uniqueness is what will get you the right kidney at the right time.

 

[Hanify]

It must be so hard waiting.  I think I would try to ignore the list completely, and just live as well as you can.  Sometimes watching a clock can make it seem longer you know?

[Romona]

  Hang in there!

[cariad]

Sorry you're feeling discouraged, Bette. I understand all too well. Waiting is a special class of torture.

Forgive me if you've already answered this question a thousand times, but is there a reason you don't get listed at a hospital with a shorter wait (like one of the three centers in Wisconsin, the furthest only being about 3 hours from Chicago?)

Try to stay positive - you know your time will come. 

[MIbarra]

Yes, hang in there. You're time will come!   

[Jie]

Yes, double or multiple lists! Get listed in areas where the populations are about 80%-90% white. Any place within 4 hours of driving is ok, or within 2 hrs of flight. The major problem is one tube of blood per list per month.

[RichardMEL]

I understand. I have been waiting 3.5 years on the list and the average here is 4-5 years.

The thing about averages is that they are drawn from a large(relatively) number of cases - where you can be waiting 2 weeks (like someone recently posted here happened to them!) or 11 years (a story I heard about here a few months back)... the average is just a number which may or may not relate to your case. It will probably come when you least expect it (like most things). I just try to remind myself each time I get frustrated and sick of dialysis that I'd rather wait longer for the right match for me that gives me a better life for longer, than jump quick and who knows what could happen. I figure when the time is right it will happen.. until then I just wait... and wait... and wait... and dream about endless jugs of iced water !! 

Hang in there! Those of us waiting understand your frustration and feeling like giving up. Don't though - that little bean for you could be right around the corner..... (sometimes I imagine the kidney destined for me wandering around the street in someone else's body, and I like to make up little daydreams about where they are and who they are in.. is it a hot blonde? or an older stockbroker? or a farmer? or in the person I just passed by in the street?)

[YLGuy]

If it makes you feel any better...I am not even on the list yet. 
It sucks being in the back of the line.  Always feels better when someone gets in line behind you.  I know, it seems like the other lines are moving faster than yours but you can't switch lines.

[billybags]

It is hard, we have been on and off the list for nearly two years. Had a heart attack. Off the list. Had peritonitus. Off the list. One doctor also said to my husband, who is 68 "Do you really think you will get a translant" I could have gone mad at him, we need the hope, we need to look forward to something. Its like winning the lottery, you never now. Keep smiling, keep hoping, one day, it will be you.

[paris]

Bette, somedays it is just ok to feel discouraged.  I am at 4 years on list.  Most days I am Susie Sunshine -- but some days it is all overwhelming.   We know you will feel more encouraged in a few days, but for now, it is ok to be a little down.   Sending you hugs      

[bette1]

Carid - I've made an  appointment to get on the list in Wisconsin.  I go up on October 1st. I've done all the tests and if they accept me my plan is to transfer all my wating time from Illinois to Wisconsin.  Hopefully that will help. 

I actully had a friend on Facebook offer me a kidney but she was the wrong blood type.  That really restored my faith in the human race.