Waiting is the Hardest Part

[PUREkatniss]

Sometimes waiting is the hardest part.

When I had a follow up visit with my transplant center back in March (2017), they told me I was in perfect condition. I was at the age, I had the lifestyle that would make me have a better chance at getting a transplant soon, hopefully in 6 months or less or at least some time this year. It's been It's been about 7 months that have passed since my follow up visit and the year is almost over.

I'm starting to lose hope if I will ever get a transplant soon. I pray everyday to get one soon but I'm starting to lose hope.

[Bet117 NKF Ambassador]

As long as you are here, you have hope.

I can imagine that it is not easy; waiting for lab result consult is stressful enough.

Just a thought, have you contacted friends, family and even people that you know through work and appeal to them to become a live donor for you?

My sister-in-law was born with one kidney and needed a transplant. Her hairstylist was tested, matched and was a live donor for her.

It's worth a try...

Know that my thoughts and prayers are with you.

You are supported on this site

[PUREkatniss in reply to Bet117]

I have contacted family and friends to be a living donor but I've had friends want to do it, but when they think about they it get scared and back out. That's why I try to educate them as much as I can about the process of being a donor.

[Bet117 NKF Ambassador in reply to PUREkatniss]

Keep at it! I was amazed that my sister-in-law had her hair stylist as a donor.

A former colleague was the donor for her husband. You never know where the educated and the brave lie.

I can understand reluctance;this is major surgery.

See if they will at least be tested. Siblings and parents are more than likely a good match.

Look on the National Kidney Foundation website...I believe they have a section on "Living Donors".

Stay strong and hang in there!

We are all behind you!

[tdscherer4]

It saddens me that you’ve had friends/family back out due to being scared. Of course there are risk but with technology and modern medicine they do everything possible to make sure the donor returns to perfect health. It’s been a year and my brother has resumed all his former activities with zero effects. He says he would never even have known he donated except for the few marks left from the operation.

[92nova]

Don’t lose hope and never lose FAITH I just received my kidney/Pancreas last Monday and I’m doing GREAT I waited exactly a year and they finally callled and they called me while I was on dialysis at the clinic! All I can say is travel still do the things u like your time will come because sitting around waiting only makes it worse !

[PUREkatniss in reply to 92nova]

Thank you 92nova for the kind words of encouragement. Hopefully I will be able to get my kidney transplant soon.

[92nova in reply to PUREkatniss]

I pray u do too🙏🏽

[ddwebangel in reply to 92nova]

Congratulations 92nova. That is great. I pray you have a long & healthy life. God Bless❤️

[rascal01]

Hey, i went thru six mths. of appts. They finally told me I was not a candidate for either kidney or kidney pancreas.I so wanted both. As it turns out I will get neither at this time. Have to go in for fistula in a few weeks. I was so upset at the time, so mad at my drs.Now i feel better about the situation. They found other things wrong with me while going thru transplant evaul. I may never be health enough to have one. I have 3 grown children, expecting another in Jan. On no list for anything at this time. Good Luck and may the good Lord be with you.

[ddwebangel]

Hi PUREkatness I hear ya. I am going thru the same thing. Was evaluated back in July for the kidney transplant list for my 3rd transplant. Everything looked good but they wanted a couple cardio tests done first. So I did them. Now they want me to see their psychologist which I see for the first time next week. I already see a therapist weekly. I had one hospital reject me & I lost all hope. But a transplant is what I want so went to another hospital for second opinion. I have worked very hard to stay as healthy as possible & the transplant coordinator says all looks good but still will not say if they will put me on the list. It is very frustrating & waiting makes your mind think in all different directions. They want us to be positive & hopeful but they don't realize how hard it can be when this is a life decision. It is hard but stay strong. Do what the doctors ask & keep hope & faith. You are not alone. I am here if you need to vent. You are in my prayers🙏

[PUREkatniss]

Thank you rascal01 & ddwebangel !!! Trying to keep the faith & stay positive always !

[KidneyCoach NKF Ambassador]

Oh kiddo, its too soon to give up or lose hope on the transplant scene. I was listed in 2004 and stayed listed until 2013, almost 10 years. In the end I was invited to list elsewhere as the list I was on had one of the shortest waitlist times (between 2-3 years) They'd never had anyone who had waited that long and my listing there was making their statistics look badly, so they removed me from the list and encouraged me to find another list. During my waiting time I lost more than 150 lbs and was walking several miles daily. I tried listing at another place and they want me to have a bladder study (none of the three other center I was listed at every required this). They also want me to lose another 30 lbs (again none of the other 3 centers required me to lose any weight. I've had 15 transfusions and 5 children which makes my antibody levels very high which makes a match all the more difficult. Hang in there. If they've said you're in perfect condition then you'll have no problem getting listed. When did you last speak with them? If its been a few months, consider calling them and asking about your status regarding listing. Best of luck & Blessings

[PUREkatniss in reply to KidneyCoach]

Hello & good morning KidneyCoach ! I hope you were able to get your transplant by now.

The last time I spoke with my transplant center was back in August, a few months after my follow back March, I called to see what the status & chances of me getting a transplant soon & they said they will call me when they have one available.

[KidneyCoach NKF Ambassador in reply to PUREkatniss]

No, I haven't had a transplant and I'm going into my 16th year of dialysis. I'm a tough match and am not currently listed but hoping to soon. Hang in there. Your status would be either "listed - active", "listed - inactive", or "not -listed". If you're still listed the next thing to do is merely live your life until a negative cross match on a deceased donor kidney is available for your blood type. Have you considered trying to get friends or family interested in living donation? Blessings