Waiting is hard but can be tolerated

[twitch34]

Hi everyone,

It has been a very long time since I have been on the site but with the work schedule it is very hard.  I had a transplant back in 2004 and now I work for the dialysis company that I was a patient at.  So to say the least I have come full circle.

I waited for my transplant for approximately 3 1/2 years.  My transplant was on August 31,2004.  I had a K/P (kidney/pancreas) transplant. 

The waiting started off hard but I learned after the 3rd call what I had to do.  I would get really excited when I would get a call and then when it wasn't for me I would get very depressed and angry. 

I finally sat down and realized that it just wasn't my time.  So from that point on I would just take the call and take the instructions of not eating anything after midnight and that whole shpeel.  Then I would pray for whoever would get it and whoever passed on that was donating the organs.  It kept me more at ease.

I recieved 6 more calls after that. The 5th call was late on a Friday or as most people would feel early Saturday(I was a night owl).  I went through my whole list of what needed to be done and then again prayed for those other people.  Well again not for me.

Then the 6th call came late Saturday early Sunday.  I told my boyfriend that he would have to take me to church and wait at the apartment for the call.  I sat in church and prayed for the other people again.  Not once saying I hope I get it.  I just said if I don't get it bless those who do.  The cross went by me and I look up and my boyfriend was standing there.  I looked at him because I really didn't know why he was standing there.  I seemed like just 5 minutes prior he had dropped me off.

He looked at me and said "Come on.  They called."  I couldn't move.  I just stared in amazement.  He said again, "Come on we have to go."

I got up gathered my things and as I was walking out of the church I think every feeling that I have ever had in my life had went through my body.  I was nervous, scared, happy, sad....everything at once.

So in total I recieved 9 calls. 

Like I said waiting is very hard but it is how you handle the waiting that makes the differance.  You will find your own way to get throught the waiting as I did.  Keep yourself busy as much as you can.  Find a hobby to keep your mind off the waiting. 

I am an activities specialist at the dialysis unit and there is also a Creative Arts therapy program in our facility so if you have these utilize them.  Those programs also got me through alot.  I found out I had talent I didn't know I had.  Alot of what I did in these programs I have at my house.  Painting, Clay work, silk painting,  I even wrote my first song on dialysis and painted my beach scene that hangs in my bathroom. 

Again you will find your own way of dealing with these things but don't let it discourage you.  I talked to a gentleman who said he got off the list because of the waiting.  And that made me sad to hear that.


Thanks for listening.

[Rerun]

Twitch34 welcome back, and thank you for your inspiration.  I've only been waiting for a year.  Never been called.  But, again I had a kidney that lasted 17 years, so it is the second time around for me.  I can wait patiently.  The hard part is "staying" on the list.  Just seemed like I got listed and it was time to start all the tests over again.  I don't know how long I can keep passing them.

[Sluff]

Hey Twitch34,

What an inspiring story, thanks for sharing it with us. Good to have you back, a lot has changed in a short time. Hopefully you can take a little more time and get reaquainted with us. .

[angieskidney]

Thanks for the inspiring story! Just in time for me as I have been really getting impatient (been waiting since 2001).

Good post!

[carolyn77531]

Thanks for the inspiring story! Just in time for me as I have been really getting impatient (been waiting since 2001).

to angieskidney
the perfect one will come...that what keeps me from crazy....

[twitch34]

Hey everyone who answered this Like I said waiting is a very hard thing and it is just how you perceive it.  I am still working at the dialysis unit and I tell that to all the patients waiting.  Keep it real. :

[Psim]

Brilliant story, Twitch. Thanks for passing on your hard-won wisdom!

[paris]

It helps those of us waiting to hear good stories with good endings. Thanks for sharing yours.  Waiting is hard, but I have come to the point that I don't think about it much.  If it happens, great, but I have to live my life in the meantime.  Your story is full of encouragement and suggestions. Great post!

[petey]

My Marvin has been waiting...and waiting...and waiting.  The first time, he waited 5 1/2 years on the list, and then his kidney came from a living donor (ME)!  Three years with the "new" kidney, and he had to go back on dialysis and back on the list.  This second time, he's been waiting for 4 1/2 years.  During all these years, he's had 8 "standby" calls, but none of them worked out for him.

The waiting is hard -- very, very, very hard.  At first way back in 1995, every time the phone rang, we both jumped!  "It's a kidney!" we thought.  We didn't want to leave the house -- what if they try to call and can't reach us?  And those standby calls are tough!  You wait for hours thinking, hoping, praying, begging that it will be "yours," only to find out that it's not -- it went to someone else or it was damaged in the harvesting.  That will break your heart!

After about a year (the first time on the list), we finally decided that we couldn't let the wait continue to consume us.  It was driving us both crazy.  Marvin said, "Let's just go on living and try to put it in the back of our minds."  So, that's what we did.  Now, instead of waking up every morning thinking, "Is today going to be the day that we get the call?" we think, "What are we going to do today that's going to be fun and meaningful and memorable?"  If THE call comes today, yes, we'll be ecstatic.  And if it doesn't come today, there's always tomorrow.  In the meantime, we're going to go on living.  This is how we get through it.

[bolta72]

Just got on the list and prepared to wait for awhile, thanks for your post.

[RichardMEL]

Thanks for the post. I've been on the list coming up 2 and a half years so unfortunately not that long. I haven't had a call yet. I'm not sure how I'll react when (yes WHEN I am positive still ) i get a call. I imagine my initial reaction might be "yeah you're joking right?" lol. Actually the other day I heard they called some guy over Christmas and he said NO (!) because he was away on holiday and didn't want to come back for it.... I was thinking what the...?? I couldn't think of a single situation unless I was flat on my back with the flu or something knowing I wouldn't be accepted for surgery because of being sick that I would say no.

I find it frustrating sometimes.. specially when I am thirsty and daydreaming of tall glasses of iced water and the like... and I keep wondering WHEN WILL IT BE MY TURN??? but I guess I just have to figure out that it will be my time sometime.. and this waiting is just leading up to when it IS my time.

[stauffenberg]

The problem with waiting for a kidney is not just the patient's impatience, but the fact that waiting is LETHAL for half the people on the list whose life expectancy is less than the average waiting time in their area, and for all people every day spent on dialysis is extremely damaging to the body, with injury to the arteries, heart, and nervous system being the primary sites of injury.

The medical profession worries about the fact that delays for cataract surgery run to six months, while delays to hip replacement surgery can run to an entire year, yet the damage done by waiting with these conditions is minimal compared to the damage done while on dialysis.

Socially the waiting time can be extremely destructive of a coherent life, and many people not only lose their ability to work and fall into serious financial trouble, but also find it next to impossible to resume a coherent career plan after having lost many years on the machine.  Divorce rates go up for patients on dialysis, and caring normally for children becomes more difficult as well.

Psychologically as well there is also damage in waiting.  Watching the people to the left and right of you at the dialysis center dying off as the years go by, seeing other patients, like grotesque mirrors of your own fate, deteriorating in front of you, losing limbs or strength, can cause profound injury to the integrity of the sense of self.

[paris]

Stauffenberg, I think you hit the nail on the head!    You are right about it not being about patience. It is more about feeling and seeing your body and life change---and not in a good way.   The waiting plays havic on your everyday life and making plans for the future.   Your post was brilliant.

[KT0930]

I agree with Stauffenberg. Especially the part about being able to care for your child(ren). For the two years that I was dealing with ESRD (15 months on dialysis; 11 months on the list) this time, I did not have the energy or the ability to do a lot of my son's Cub Scout activities with him; and I didn't have the energy to answer all his endless questions. I thank goodness that my husband (my son's step-father) was willing and able to step up and be such a wonderful father to him, but I will always wonder how much damage the last two years did to my relationship with my son. 

[kitkatz]

Why should I have to be patient to wait for a life-saving procedure to be done?  Yes, I realize dialysis is saving my life, but a transplant is touted to be so much more wonderful!

Maybe that is why they call us dialysis patients, patient. Because we are waiting so damned long for a kidney!