WE TRY TO BE PATIENT WAITING FOR A KIDNEY Why are we passed the time we said we would get a kidney on the list?

[NeedingAdonor]

My husband awaits a transplant. With four kids, me, parents, siblings, in-laws, colleagues, relatives, and great friends, the support is excellent but I feel failed. I feel failed because we were told he would be on the transplant list for 2-3 yrs. Now it's just over three years. When will we get THE CALL> ? We still campaign for a donor and Greg is on his 6 or 7th potential donor screening? GOSH What a rollercoaster of emotions. His aunt was on her final donor testing and wasn't accepted. Blah blah blah my brother even tested and he felt the reason for denial was ridiculous and unrealistic. This is him with his two sons. He tries to keep a brave face for these two cutie pies. We want to see them graduate and be married.

[LisaSnow]

It can be very frustrating yes. In our center (USA) the wait is 7 years on average. What country are you in? Remember, dialysis is inconvenient but can keep him alive and functional for a long time hang in there.

[NeedingAdonor in reply to LisaSnow]

No it can.t. He also has diabetes. Survival rate on dialysis average 5 yrs

[NeedingAdonor in reply to NeedingAdonor]

We are in USA

[ArsenalFan]

I would work with other hospitals or even go out of the region.

[NeedingAdonor in reply to ArsenalFan]

not a bad idea

[Dara3351]

Yes waits are long however, now people with Hepatitis C can donate kidneys because it can be cured! I signed a waiver and was called within two weeks. I did a 12 week treatment for Hepatitis C and no longer show signs of Hep C. I am now 13 months post transplant and am doing great. Ask the transcript team for information!

[NeedingAdonor in reply to Dara3351]

hmmm interesting. Can Hep C re-occur?

[Dara3351 in reply to NeedingAdonor]

I live in Arizona so I get tested regularly for Valley Fever. I get blood draws once a month and get tested regularly. I show no signs of Hep C. Hep C is passed through the blood of an infected person. The transplant team and my nephrologist are really good and keep good tabs on me. I wouldn’t worry about a reoccurrence once urs been cured.

[Herkidney]

In California, the wait time for a kidney transplant for my blood type was 7-8 years. I was fortunate enough to receive a living donation from my spouse so my wait was one year. A friend who received a deceased kidney donation a few years before me shared that as she moved up the list, she started getting calls from her transplant center. So, maybe you can contact your transplant center?

As Dara3351 pointed out, ask about the Hep C kidney availability. It is a great option. I had selected that option at my center before my spouse was approved as a donor.

[NeedingAdonor in reply to Herkidney]

Thats interesting. I wonder if you just have to say you will do a high risk kidney rather than specify Hep C. I will check into it thank you. The wait time in Oregon keeps increasing Was 2-3 yrs now 5-6

[pops81]

I was lucky my sister was a great match, my cousin needed a transplant and her husband was not a match. so they joined a transplant chain..my cousin's husband donated to a stranger who ageed to find a donor for another person and so on and so on, that as part of the chain a stranger ended up matching my cousin.. google kidney transplant, a chain of events that saved lives. also the National Kidney Registry should be of help as a resource..good luck

[NeedingAdonor in reply to pops81]

Thank you

[NeedingAdonor in reply to pops81]

We FOUND A DONOR! We enter the advanced paired exchange and will be getting it from someone else. His old friend is donating and his will be paired. Keep praying everyone! Don't ever give up, it will happen.

[WYOAnne NKF Ambassador]

If it were me, I would call your nurse coordinator at your transplant center. Just ask the question again, how much longer? When I was on the list, I called my coordinator and asked how much longer they thought it would be, comparing my blood type, etc. with the wait time the year before. I will always remember that she said about 14 months. A week later I was called for my transplant. That was 20 years ago, and yes, the wait time was a lot less then

[NeedingAdonor in reply to WYOAnne]

wow thats incredible

[bakermaker222]

May I ask what state you live in? California is the worst. My husband and I moved to Az. I transfered my time and received a kidney in 2 months at the Mayo Clinic. My heart goes out to you. Best of luck. I will keep you in my prayers.

[NeedingAdonor in reply to bakermaker222]

Oregon, It used to be 2-3 yr wait here now its 5-6

[NeedingAdonor in reply to bakermaker222]

Appreciate the prayers!~

[bakermaker222]

Your husband is so young. A living donor would be best. If its possible you can transfer your time to Mayo in Az--first you have to be accepted. They have a reasonable facility you and your husband could recover. The difficult part is who could care for your children. I wish you well during these trying times. Please stay well. Blessings to your family.

[NeedingAdonor in reply to bakermaker222]

Thats interesting, thank you so much. I will check into that clinic and see if it is more efficient. What is the waiting list in Phoenix at the Mayo Clinic?

[bakermaker222 in reply to NeedingAdonor]

You can transfer the time you already have. It shouldn't be too long. Your husband has to be accepted first. I think you can make an appt. on line . This is probably a busy time for them--with the coronavirus. Good Luck.

[NeedingAdonor in reply to bakermaker222]

Thank you so much. Well, just for an update. We have 2 people screening to be living donors. Crossing my fingers one will match through to the end. One is already the right blood type.

[Dara3351]

I also wanted to tell you that I had my transplant at Banner Medical Center in Phoenix! Not sure what state you are in but do your best with your diet and water. I worked with a dietitian who adjusted my diet based on my lab tests. But please check about a Hep c kidney. I was 68 when I had my transplant..will say prayers that you receive a kidney soon.

[NeedingAdonor in reply to Dara3351]

Appreciate your prayers. I'll be praying today for everyone affected by this disease. And healthy healing to those that have been blessed with a transplant!

[Sparklyjo]

Sadly there is no definitive time !! I know its frustrating but no one has 'failed you' and I think its unfair of you to think that. Trust me I know more than anyone how hard it is BOTH my sons have been on the list and its bloody hard waiting. Have your and your family been tested? Keep you chin up, it will happen and trust me you wont be ready and itll be a surprise lol we actually unpacked our sons hospital bag, 2 days later we got the call!! Sods law lol keep smiling and good luck xxx

[NeedingAdonor]

Thank you. Michael, 21 now, Greg's son tested when he was 19. They said he was too young. His other boy is 18 and girl 24 hasn't tested and doesnt plan to. His aunt tried and wasn't accepted. We learned the hard way to keep lining people up. We are getting more no's then yes's. So one of your boys is still waiting for a kidney?

[Lionkin]

There is one web site - it is quite accurate , it lists Kidney Transplant Centers nationally wait time, if you find one near to your location talk to them & possibly go on multi listing with them.. you never know... that's how I developed a Plan B if my wife was not going to match... Wishing You Luck & Stay Safe

txmultilisting.com/wait.htm...

[NeedingAdonor in reply to Lionkin]

Thank you!

[mcrain]

I am so sorry it has taken so long. be sure to have your doctor talk to you guys about the different dialysys. You don't have to do the blood where you go 3 days a week and are always tired. My doctor put me on Home Hemodialysis. I went to work every day and was not tired at all. it is also less stressful on your body and heart ! If you have anyone that is willing to donate but they are not the right match, You can do a shared group. It happens a lot faster. My daughter wanted to give me her kidney but it would not match so they kept her info . I started Dialysis in 2/15 and had transplant on Oct 15 all because of her. It was a 3 way. My Dr was awesome and was always checking for his patients!!

Best of luck

[NeedingAdonor in reply to mcrain]

That was so fast of a find for you. We finally had a donor approved and will be entering advanced paired exchange next month. I feel forever grateful and blessed that angels are out there to give another life to you. God is great!

[mcrain in reply to NeedingAdonor]

So glad to hear the good news!! You are totally right God is great. I thank him for this blessing all the time. Best wishes and be safe!!

[Mary928]

So sorry that’s how I felt! They have their protocol. I waiting almost 11 years. I’m in California. You can sign up at more places. Over here I got my kidney in Los Angeles but was told the waiting time in San Diego was only a few years. Check around

[Googoodoll]

My husband was on dialysis from February 2009 to June 2019. He has diabetes and high blood pressure. He was taken off the list in 2014 as he suffered a stroke (bit it only affected his speech). He accepted a cadaver kidney and it was slow to get it going at 1st. 1 year later and he has great kidney function. He has been following a strict diet where there is no snacking and at least 4 hours between meals. This allows the blood sugars to go down. I hope this helps you understand that the 5 year survival rate for dialysis is only an average. Best of luck to your husband and to you and your family. *edit* By the way, we live in Texas.

[NeedingAdonor in reply to Googoodoll]

Oh I am so happy to read he had an excellent outcome with his kidney transplant. WELL GOOD NEWS!! His friend was approved to donate. We are doing an advanced paired exchange as he wasn't a blood match. Prayer and God is the reason it's happening. Thank you for writing. I'll keep the strict diet thing in mind.

[Googoodoll in reply to NeedingAdonor]

Congratulations! I'm not going to lie, the 1st month or so is a little tough, adjusting to a new routine. You'll have to go get labs frequently and make sure the medications are taken exactly on time. Other than that, not having to go to dialysis is SUCH a blessing! I wish you both the best and you are in my prayers! 🙌🌹💕

[NeedingAdonor in reply to Googoodoll]

I appreciate your prayers. I'm thinking of you in my prayers tonight also.

[Navjam]

Sorry to hear about your problem.

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