My Journey

[YLGuy]

I chose this hospital because they have they highest success rates for patients and kidneys in all of Southern California.

[MooseMom]

Seems to me that having the highest success rate doesn't help if they won't let you have an altruistic donor.  Don't let statistics blind you.  How about LarryG's story about finding a donor on Craigslist?  Why does HIS center allow that but YOURS does not?  I truly don't mean to be harsh, but look who has got a kidney.

This just really gets up my nose, Marc.  I really chafe at the idea that your center thinks they can play God and decide who is emotionally attached enough and who is not.  Frankly, I think it is illogical, and it borders on the immoral.  I'm just really angry on your behalf.  Sorry.

[YLGuy]

Thanks, to be honest I am just way too tired to be angry.  Life is just getting way too hard.  I have to worry more about keeping a roof over my head and food on the table right now. 

[okarol]

It was 2004 when Jenna's hospital said they didn't accept donors that didn't have a significant emotional relationship with her. The other hospital said they would be willing to look at each donor on an individual basis. We had already tested all the family and friends that had offered to donate, so changing hospitals became necessary.

YLGuy, I am sorry you're having difficult times. You've got so much responsibility with your kids and dealing with CKD on top of that must be tough. Please let me know how I can help. 

[C904]

I strongly agree with some of the recent posts about check into going to another hospital that will allow donors that you don't have a emotional connection to. Forget the statistics some hospitals will really push their great results to convince you to go with them.  Overall the numbers are usually not that much of a difference and if you see a difference often times it is connected to the type of patients that a hospital may embrace that could be high risk and another hospital would reject.  View the numbers this way kidney transplants are not done on every corner they are not like nose jobs and breast implants where there tons and tons and tons of people doing them.  Unless you see one hospital with a 50% success rate and another with 85% don't get caught up in it.

If you change hospitals try and do what one of the earlier posts talked about with getting your story out there.  You said you pray do you belong to a church?  Maybe you used to be in a bowling league or some social club.  High School reunion recently or coming up?  You have kids, have them set up a Facebook account and try and find old friends.  How about neighbors?  Talk to as many people as you can about this because it could spark a idea to get you a kidney.

[YLGuy]

It was 3 years ago today that I was informed that I had end stage renal failure. 

[willowtreewren]

It was 3 years ago today that I was informed that I had end stage renal failure. 

And you need a hug. 

One of the things I came to realize through dealing with Carl's transplant hospital (which also had a high success rate) was that they were VERY quick to deny all sorts of potential donors. I'm not sure if that was a factor in their success rate or not, but it was quite disconcerting.

I agree that you might want to investigate another transplant hospital. Transplanting is good business. When we started looking into another hospital a little further from home, our center suddenly agree to do a nuclear test of my kidney function. The other hospital had a slightly lower level of functioning that they would accept than our first center. As it turned out, Carl got a kidney from a deceased donor. But it was amazing how quickly the hospital became more accommodating when they thought they were going to lose us.

 

Aleta

[YLGuy]

I just finished my last appointment for the annual stay on "The List" check ups.  The dietitian and transplant surgeon told me that I was probably their healthiest patient. I kept thinking about all the people who say how I don't look sick at all.  No, I do not wallow in my sorrow but it has taken so much from me.
3 years down...7 more to go!   

[YLGuy]

Just stopped by to add to my thread.  Won't be able to come back to read any replies.  It is way too hard for me right now.

Kind of bummed out.  I have been on dialysis for 5 1/2 years.  I had a number of people offer to donate a kidney (.  They were tested and could not donate for one reason or another.  I recently had another person offer to donate one of their kidneys (#9). (Thank you so much Judy and all the others!  There are no words that could even begin to relay how grateful I am to those who cared enough to offer one of their kidneys to me.)
A couple of weeks ago I had a meeting with my transplant surgeon.  He said it was a go!  I told him that the donor is a teacher and wants to wait until the beginning of summer to do it.  He said great and was going to start the process in February when I have my annuals.  I was finally going to be done with dialysis! Woo Hoo! 
About 4 hours later I got a call from my dermatologist.  It was 8:15 at night.  He told me that the growth on my ankle was a rare sarcoma.  I spent about 9 hours at City of Hope Hospital the other day.  It has not spread to my lungs.  They are pretty sure they can save my foot but they may have to remove my Achilles' Tendon.  Either way I will have a huge whole in my foot that they will have to take skin from somewhere else to close up.  I start radiation therapy soon.  5 days/week for 4-5 weeks before I have surgery.  Dialysis days will be long.  I will be going an hour away for radiation therapy as soon as I get out of dialysis.  Maybe some chemo after surgery. 
The biggest bummer is the fact that the cancer will knock me off the transplant list for a minimum of 2-5 years. I just got off the phone with my transplant hospital.  I am officially suspended from the list.  I guess this is a good thing because if I had the transplant either the the cancer would have spread quickly due to the immunosuppressants or I would have had to stop taking them killing the new kidney.  Kidney failure and dialysis have been a long and difficult road.  It seems like I have run a marathon.  I turned the corner and saw that the finish line was only a 100 yards ahead.  I looked down and when I looked back up someone had moved the finish line.  No longer visible. Four hours. I had four hours that I thought I would be done with the nightmare they call dialysis.   I will beat this too but it will be awhile before I actually get my life back.  I am still here to complain about it and that is always a good thing.  I am truly blessed with 3 awesome kids and many caring friends and family. 

[PrimeTimer]

YLGuy: Even though you may not be able to come back here to read replies, hope that somehow you will be able to "feel" the strength, hope and well wishes that some here will be sending your way. Hopefully in some way or another, you will know and feel others thinking of you and wishing they could somehow give you strength because, whether you realize it or not, you have just given of yourself.

[MaryJoe]

One day you will come back, not to read replies, but because we are part of your kidney tribe, and you are part of ours. I pray for strength, peace of mind and courage for you and your family as you go thought this difficult time. Cancer sucks,and you have been dealt a lousy hand, but I am glad the sarcoma has not spread to your lungs. Please let someone know haw you are doing. We will worry about you.

Hugs.

[cassandra]

                          



And lots of strength, and luck, and love, Cas

[MooseMom]

Well, that's just really crappy.  I'm well and truly pissed off and am very angry on your behalf.  Sorry...I don't have any sweet and sugar words for you to live by at the moment.

I hope that by the time to feel like reading these replies, your circumstances will have changed for the better.

In the meantime, do what you need to do.  Take good care of yourself.

[jeannea]

I'm so sorry. That is absolutely crappy. We are here for you if you need to vent more.

[YLGuy]

Yes, I am still here to add to this Journey.  I fought cancer and won.  It turned out that it was not a sarcoma but a rare form of Non-Hodgkin's Lymphoma.  I had surgery and then went through low dose radiation every Tuesday and Thursday keeping my Monday, Wednesday and Friday dialysis schedule.  This went on for what felt like eternity.  I had the best doctors at a great hospital here in Southern California.  I owe my life to City of Hope!  Then it happened.  They cleared me for transplant and wrote a letter of recommendation for me to get back on the transplant list.  I chose a different hospital because the transplant surgeon I had before rudely told me that I might be able to find another center to do my transplant but he guaranteed I would be dead within a year if I pursued that.  My oncologists assured me that this was not the case for me anymore.  The original transplant surgeon would not even speak with my oncology team from City of Hope.  Very unprofessional. 

In the meantime one of my high school buddies had called me out of the blue awhile back as his younger brother passed suddenly here in SoCal.  He asked if I could use his brother's kidney.  Because I was not listed anywhere I could not take it.  It is very moving to be thought of during a time like that.  May he rest in peace.

I contacted a great center near me and was going to start the process all over again at the end of last year.  I was about to have my orientation meeting when I got a call from my uncle back in Connecticut.  He told me that if I wanted to say good-bye to my mom that I should get on a plane right away.  As tough as this journey has been I know that I am truly blessed with some really great people in my life.  They made it possible for me to afford to go back.  I made it back there and my heart broke when I walked into the hospital room.  I stayed there for a month while she transitioned into Hospice.  I had to get back to California and a week after I returned she passed.  I was extremely close with her and even though I lived so far away we spoke multiple times a week at length.  I still go to pick up my phone now and then. 

The transplant center was not to keen that I postponed everything a month but they understood.  I was almost done with my testing when Covid-19 hit and they stopped my testing.  I only had a couple of things left to get back on the list.  Recently they opened back up and I finished testing.  My file went to committee and I was approved for transplant.  They were supposed to contact UNOS last Friday to put me back on the list.  I am waiting for my letter.  They said that since I will have 11 1/2 years on a 10 year list I should get calls right away.  My bag is packed.  I am cautiously optimistic. 

[kristina]

Good gracious ! What a journey ! I am very sorry about the bad luck you had to go through and I just hope you can make use of your packed bag a.s.a.p. in the transplant-centre and enjoy a new kidney.

Hopefully your "kids" are alright and keep your mental strengths & hope going.

Best wishes and good-luck-thoughts from Kristina.

[YLGuy]

My kids are great.  Single dad of 3 I raised through all of this.  My oldest graduated cum laude with a Bachelor's degree from Cal State.  He recently paid off his student loans and is starting graduate school.  My middle child graduated college in 4 years with 2 Bachelor's degrees from UCI and has her Master's degree.  My youngest is in his last year at Cal Poly and will graduate with a degree in Civil Engineering.  My 2 boys still live with me and I am grateful for all of their love and support.  I love being their dad.

[MooseMom]

Oh, my God!  YLGuy!  I can hardly believe it's you!  I am thrilled to bits to "see" you.

Gosh, you have really been through the wars, haven't yoiu.  Cancer, the passing of your mother, fighting to get on the transplant list, getting ON the transplant list, raising your kids...it doesn't get much harder than that.  But here you are, finally in prime position to receive a new kidney and a new future for you and your sons and daughter.  This really is the best news I've heard today.  Thank you SO MUCH for taking the time and making the effort to come back to tell us.  I wish you only the best and am looking forward to hearing good news about a new kidney!

This is just fantastic, it really is.

[YLGuy]

Well, it finally happened. I got the call. I received a transplant Monday night 10/19/2020. The kidney came from someone younger and flown in from another state  the kidney was delayed because of covid and the lack of flights   It was a 5 out if 6 match and started to produce urine before they closed up  It was approximately 11 years and 7 months after I started this journey. I am blessed to have so many people in my life that helped and supported me. I got to raise 3 great kids that are there for me and the best reason to never give up the fight no matter how hard it was at times.

[iolaire]

Congratulations! Its fairly amazing and cool how your wait time was so "short" due to the time on dialysis.

[cassandra]

  Fantastic newsYLGuy, good luck, enjoy and have an extra drink on me,


Love and luck, Cas

[MooseMom]

Oh!  My!  Goodness!!  This dreadful year of 2020 has a silver lining!  I'm so very happy for you and wish you the very best for your new future!

[SooMK]

Great to hear!