Road to transplant....

[brotherskeeper]

Hello everyone!
What a wonderful sight. First, I would like all to know, I was given a huge packet and posts from this sight by my social worker at the University of Cincinnati Hospital today. Its definitely a good thing when someone on your transplant team is aware of this site people on here should be very proud the hospital is sharing your wonderful posts and comments. They are very helpful.

I guess I just wanted to say hello and share my experience thus far, in hopes it may educate or help another donor, in anyway,someday.
I am a 37 year old female, married, mother of 2 amazing childen.
My younger brother (33 years old) has end stage renal kidney failure. We learned of his illness about 2 years ago, and knew a transplant would be in his future. Everyone in our family said they would be willing to donate to him. As reality set in, some did change their minds.
In September 2012 he was moved to the transplant dept. at UC Hospital.
At that point, myself, and my other 2 brothers were suppose to be tested.
I went for my first blood test on Sept 20, 2012, my older brother went the same week. Unknown to us until recently, my other younger brother was scheduled to be tested, then never showed up for his inital donor test.
Through process of elimination, my younger brother did figure out which sibling did not get tested. I can't imagine the feelings either of them were feeling or have felt about that.
For me, there was no question. My baby brothers needs a kidney, I have an extra, its his. I hoped and prayed I would match.
On October 4, 2012 the results were in. My older brother was a 5/6 antigen match. I was  his identical 6/6 antigen match.
At that point, his transplant cordinator, only notified him that he had an identical match, and a 5/6 match of the two people tested. She had to call us first to disclose the results of who matched what. When she called, I stated I wanted to move forward. Automatically setting up my appointment for my first set of donor tests for October 30, 2012.
There are no words to descibe the feelings that day. It was a very tearful night for me. Knowing he was lucky enough to have an identical match.
My first rounds of tests began yesterday.
I started off with the 24 hour urinalysis on Monday with it ending on Tuesday morning.
I woke up Tuesday morning, off to the hospital. My testing began at 7:30 a.m. and I didn't leave there until 5:00 p.m.
I met with "our" transplant cordinator, the transplant doctor, and a social worker. All were amazing and very informative.
In between the meetings, I had to give more blood throughout the morning 3 different times.
After that, I had several more tests done. I had an EKG, Echocardiogram, Pulmonary Function Test, Cat Scan, Chest X-Ray, Stress Test, and a Pap Smear. All while fasting.
The cordinator said it should take about a week to get all the results back. Once she gets them, she will "present" me and my tests results to the transplant team.
After that, If I am cleared, and my brother is cleared, we will be setting a transplant surgery date
I think the waiting game is going to drive me crazy.
First, we had to wait for the inital donor tests results, now we are waiting to see if this set of tests all come back okay. I can't even begin to count the hours of sleep that I have already lost since this process has began.
For me, It feels like it is consuming my every thought around the clock everyday.
I was so uneducated until recently in regards to living donation.
I never knew there were over 100,000 people waiting on a transplant list. I didn't know on average, 19 people die daily waiting on a kidney. Such shocking information!!!! I would like to think there is a way to educate people better. My thoughts and prayers truly go out to those people that do not have a living donor.
As for my brother, he has not been placed on dialysis yet. We are in hopes that he wont be, pending the results of these tests.
So, there is it. Our story thus far. I will post again as soon as we get the results of my testing.
God Bless you all on LDO. The gift of donating life is truly remarkable.

[Karol]

I hope all goes well and you'll soon be picking a date. 

[Fr Pat]

     Thanks for posting your experience. You may have to learn to be patient, as sometimes there are delays in the process even though someone very much wants to donate. So while you continue the process, please remember to take good care of YOURSELF.
Make sure you get enough sleep. Have a regular exercise habit to get ready for surgery. Keep to a healthful diet. And do what you can to keep your mind and spirit strong, or else the tension of waiting (and possibly dealing with frustrating delays) may wear you out.
     Some donors have found it helpful to keep a journal, both of the tests, etc. and of their own feelings and emotions during the whole process.
     Feel free to drop in here both to read and to ask questions (or just to share how you are feeling). Everyone here has been through it and are glad to try to help.
      best wishes,
          Fr. Pat

[SWB]

Congratulations on the match.  I know it is hard to be patient through the process.  I got all the way to the night before surgery at one point and the whole donation was delayed.  However, finally made it through the donation part a couple of weeks ago and everything has gone fine.  In short, I know that the waiting and desire to donate can drive you crazy if you let it. 

As I shared in previous posts, the journey of donating has taught me to be a lot more patient than I ever thought possible.

Just remember - in order to take care of your recipient you must take care of yourself!  All of that anxiety will cause your system to get out of wack and your immune system to crash out.

Glad to hear that the transplant centers are pointing people here.  This is an awesome site full of information and has proven to be a God-send to many of us.

You might want to consider signing up for a Donor Buddy on this site and/or see if your transplant center has someone you can buddy up with.  It really helps to have someone to discuss and share thoughts with who has also already gone through the process.

And, if there is anything I can do to help answer questions or share experiences just let me know.

Warmest wishes throughout your journey,

-Scott

[elephant]

Dear keeper,

What good news that you are a 6/6 match.  I hope everything goes smoothly for you and your beloved brother.
I was able to donate make a preemptive donation to my father last year.  The transplant team worked as quickly as possible to make it happen - we went from my first blood work to donation about 5 weeks.

Love, elephant

[Gee]

I hope you get results soon (me too) and I've found taking brisk walks on the park trails reduces the stress of waiting and also is great healthwise.  You'll be able to sleep better too.  Focus on the day your brother says "Sis, I didn't know I could feel this good!" He certainly is blessed to have such a giving sister.
Gee

[Aries7]

I just wanted to say "hello and welcome". I also really disliked the waiting game. I am hoping all is going well and that you get favorable results, and soon.

Please keep us posted!

Linda

[mintx]

During this process I think we all learned a new meainig for the word "wait".

 Wait until Mom finished her testing.  Wait until someone approves my questionaire  for the next step. Wait until I eat healthy for a week or two before I have tests done ( just to be extra careful).  Wait unitl its not the wrong time of the month to do urine test ( sorry guys, but I learned that lesson the hard way).  Wait until there is an open appointment slot. Wait for another appointment.   Wait for the committee to meet again.  Wait until I can fly to the hospital to be evaluated, wait for the committee to meet. Wait until I can have one more test.  Wait for the test to be read. 

Luckily we are at a new step of waiting.  Wait for one last test for mom and then wait for a donor chain to fit us.  In the meantime, try not to let this take over your life.  Good Luck!

[brotherskeeper]

Thank you all for the kind words and input. Here is my update.....
After a LONG wait...... I have officially been cleared for surgery. YES!!!!!
I probably would have had an answer ALOT sooner but on my initial cat scan, they seen a "spot" on my adrenal gland. I had to wait another month to get in to see a specialist. I had to have another round of tests done. He determined it was nothing and gave the okay. I was then presented to the transplant team and approved Our surgery is not until February. Due to my daughters 7th birthday, we are waiting until after that.
Wow..... Now I'm in the "waiting" game again. Waiting on surgery. The stress level of the waiting to be cleared is gone. Now the stress level of fear is rising. Fear of the pain, fear of the recovery road, fear of my brother rejecting my kidney. So overwhelming!!!! Geesh, sometimes I think my mind is playing tricks on me!!!!! Is this normal??

[Fr Pat]

     If you have not already seen them, there are a couple of pages of suggestions about your hospital experience that the National Kidney Foundation gathered from past donors at:
www.kidney.org/transplantation/livingdonors/infotips.cfm
     best wishes,
        Fr. Pat

[jstx]

Congratulations! I remember the excitement of finally being cleared to donate. This really does tend to consume our lives. Everything is about completing the next test, waiting for the results, going through evaluation, and over & over again. Your fears are normal. I couldn't believe it was really happening either. My testing period was about 9 months start to finish & most of that was spent waiting....always up in the air wondering if I'd be cleared. So it took a while to really sink in. Like Fr. Pat suggested, use this time to really prepare for surgery. Put a list together of things you need to take, read through other donors' suggestions about what they felt was most important to have with them, and enjoy this time. You've begun an adventure most people can never imagine. You are doing a wonderful thing. Just relax & try not to let the fears overwhelm you. You're doing your part & the rest is out of your control. I still fight the fears occasionally wondering how my donor & Lefty are doing & can have moments of anxiety but I have to remind myself that it's out of my hands. Praying & asking my friends to pray for me helps me. I had a strong prayer network going into surgery too & could let them know I was having anxiety on particular days or about certain things & ask them to pray for me. It helped tremendously! I don't know what your faith is but perhaps something similar would help you. Getting exercise, taking brisk walks in the cool air, chatting with friends, etc are some other things various donors have also mentioned. Basically, do what helps you to relax & have fun.

[dodger]

Brotherskeeper, Congratualtions!!!  I donated to my niece and for me  it was a no brainer also, of course I will.  You may have some jitters presurgery, of course, surgery is surgery, but I can say, the day of surgery, I was sooooo calm. 

May I ask what caused your brothers kidneys to fail.  My niece has AgI neuropathy.  No one in our family ever had it before that we know of.  But then, that doesn't mean anything. 

As it gets closer keep us up to date and if you have any questions or your nerves need calming, this is the place to be.  Best wishes, Janice