kidneygurllll3 years ago

Hello love!

I am currently about a little less than 2 years post-op and actually around the same age as you! I thank God everyday for this blessing but 7 years of dialysis and going thru the transplant process was so hard... I totally understand what you mean...

Personally, I just try not to think about a second transplant but obviously and realistically it’s hard not to. I do get a tremendous amount of hope when I see people here saying they had their transplant for over 20-30 years. But most of the time I have the same anxiety and worry.

I don’t know what your faith base is but I pray everyday and feel more at peace as I decided to leave it to God’s hands.

I am not gonna lie though, there are days when I try to be positive and days when I feel a bit hopeless. I feel guilty for feeling this way since I was blessed with a kidney but as a human being... we are prone to feel the pain much easier than joy.

I too really cannot see myself going thru dialysis again and haunts me to think about it. It helped me stay alive and forever grateful for my new kidney but the whole journey to get where I am now, as everyone here most likely experienced similarly, wasn’t a dance in the rain. To be honest if I had a transplant lined up right away and was able to skip dialysis I would do it. I think dialysis is what I ultimately dread...

As you probably are doing, and so am I, we just have to take it day by day. Focusing on today and tomorrow rather the x amount of years in the future. Taking care of our physical AND even more importantly our emotional health is our life plan for now. Sometimes it’s good, sometime it sucks, sometimes it’s fine, sometimes it’s blah. It’s a constant rollercoaster, esp with the medication we need to intake.

I just try to focus on the small things like drinking unlimited amounts of water, being able to PEE!!! and being able to be somewhere I choose to be while doing something I want to even if it’s just lounging freely at home (because well, pandemic) rather than being chained to a chair and a machine.

Because sadly, for us chosen kidney people freedom is conditional and it though it makes me cry and break down at times, I have to squeeze every little of this freedom I have at the moment.

Who knows what the future holds and what new science advancement is developed that can help us fellow kidney survivors!!

I don’t even know if what I’m saying makes sense lol I don’t know if this was the answer you were looking for but I want you to know you are not alone with this feeling of bliss and joy one moment and just plain.... ick and blah majority of the time. It’s literally an unending cycle lol

I guess what I want to say is, I feel you a hundred percent. I read somewhere once that every person has an amount of pain they are given to endure in their lifetime. Since we got this out of the way, I know more blessings and happiness and health and luck is waiting for us in the future.

I might not know you personally but I’ll be praying for you. and me. and everyone here going thru the same thing we are.

Good luck best wishes hugs and kisses!!

1transplant in reply to kidneygurllll3 years ago

Hi, I'm 71 yo and will be celebrating 8 years with a kidney transplant. I hear all the concerns about going through a second transplant. I hear about all the statistics that a transplanted kidneys lasts 10 years a majority of the time. That makes me anxious. If and when this happens, will I be too old for another transplant? And where the heck will they put it if I should get so lucky? Can I have a tummy tuck this time? I surely need one.

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IvyPark13 in reply to kidneygurllll3 years ago

Thanks so much for this post, I really took it to heart! Your words help bring comfort and optimism at the same time! It's what I needed to hear from a fellow kidney person

I hope you win the lotto or good vibes come you way and thank you for responding!!

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AndrewT3 years ago

Dear IvyPark13,

First of all Congratulations, on your new Transplant. However.... one question.... Why are you being So 'Negative'- you COULD live, with this Kidney for Sixty Years. Not 'that' likely? Nor is 'Expecting' it will only last a few years! One of the Dialysis Nurses, at 'my' Unit, had had a Transplant..... Years before.

Sorry Ivy but you ARE, like me- indeed All Of Us- a Very Lucky/ Fortunate girl. Why can't you simply accept your, Very Good Fortune?

From a Fellow Recipient

AndrewT

LisaSnow3 years ago

However you feel about another transplant is just right, for right now! You do not know how you "will" feel about it 15 years down the line though, so it is not necessary to stress about it.

I think about the need to have a second transplant also because it is a reality in our lives. In fact, I think about what I need to do to get it quickly so I do not need to worry about dialysis in between lol!

Everyone is different and it is OK to have strong feelings, just remember, it is far down the line and the most important thing today is to be good to ourselves!

Donaldson00073 years ago

Yes. I have absolutely had these thoughts over the last 5 yrs post transplant. It comes and goes. Good days are good and bad days have me thinking I do not want to go through this again. I hope you find the answer that is right for you when that time presents itself. Best of luck to you.

WYOAnneNKF Ambassador3 years ago

Yes. I know exactly where you are coming from. I will be 21 years post transplant this October 15th.

Don't know if you saw my post GREAT SUMMER!?#@$ I ran a fever for 4 months till they discovered that it was not COVID, but was my gallbladder. It started to really scare me, because the fever, etc. was starting to effect my creatinine. I too, feel like I could not go through all of this again.

If the time ever came, only you could decide for yourself whether you wanted a 2nd transplant or not.

If I am honest with myself, I would probably do anything to live the life I have for the last 21 years.

Take care of your kidney and live your life to the fullest. Don't put off doing something you always wanted to do.

Lionkin3 years ago

Hello IvyPark13,

if I was 29 yrs, the Question of a 2nd transplant would come naturally to me too - You are doing well and seem to be very conscious of your health. Having said that you will get the realization when it is time for the 2nd Transplant. Just stay on top of the test reports and kidney function.

I know in my case I may not get a 2nd Transplant (due to age) , but right now I feel 1000 times better Than I ever felt in the last 25 years prior to transplant - so I want to live a balanced life and daily look forward to all the magical moments ahead of me

Good Luck & Best Wishes

Gizmo6203 years ago

I know the fear of second transplant when you receive the transplant at a young age like i did. I was 20 years old midway in college when i had my first kidney transplant. I was told most likely I would need one in the future but never worried about it because I was just enjoying life and happy to be able to go about and live "normally" like everyone else and continue college life, graduate, career, marriage and go about life not giving it a second thought. I had many other health conditions after my first kidney transplant and it lasted about 17 years until i had needed another one and fortunately was able to have another kidney transplant and now I am post 4 years of my second. Don't worry yourself of what may or may not happen in the future. Take if from me you have to live one day at a time and live for the present.

daxielovinglady3 years ago

Hello IvyPark13,

Please speak to your Renal Team, mention how you really feel next clinic appt.

My Transplant was in Feb' & have several complication, so I do suffer Black Dogs.

This pandemic adds unnecessary extra fear for us at High Risk & Vulnerable .

They do say "Kidney Transplant patients suffer the most from depression",

so please , please talk to your Renal Team. Take care & stay safe.

Azulwolf3 years ago

Hi

Congrats on your new kidney. I remember feeling exactly that way after my second transplant but I quickly realized I could not think like that and continue to stay sane. All I can say is enjoy life and live it to the fullest. We have no control over what happens with our kidney, just continue to do your best and pray. I was 14 when I received my first kidney (lasted 12 years). Second transplant (13 years) and now on my third (3 years now, yahoo!!!), I'm 52 years young. Sure I could worry about what its going to look like if I need a 4th transplant and that thought does creep up every now and then but I just can't worry about the future like that. All I can do is my part to stay healthy, help others and enjoy my life! Like someone else said above, everyone is different. Some people have had their transplants for 30-50 years! Perhaps you could be one of those people only God knows. 10, 15 50 years down the line who knows what they might have and by that time you will do what ever it takes to stay alive. Best to you and keep up the great work. Stay safe!

LisaSnow in reply to Azulwolf3 years ago

May I ask if your surgeons removed the first two transplants? Thanks.

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pops813 years ago

Hi, Congrats on the kidney. I did not see if you received a living donor kidney or cadaver. But yes if you think too much about it, you realize there now comes a great burden with this remarkable gift. Mine was my sister's and I always wonder if she was judging me about the decisions I was making with my life and her kidney and then the guilt of living through so much BS while better people around me were dying at a young age. Even though she never has judged me and most people would never know I have had a transplant and its complications. So there is a lot of things we can worry about and stress over having survived this ordeal , as well as the fear of the transplant rejecting. That is why my transplant team had a staff psychologist to help us through the things that can pop-in a transplant survivors life. I can go on and on, but based on my experience if I were you I would try and see if your transplant team knows someone who can help with this process of the healing. FYI, I have been on this journey since 1978 between the initial kidney failure and my transplant. Yet, there are moments it still enters my mind, but then my grandson calls and says he wants to go for a motorcycle ride (No panic its really a trike), bringing me back to "ground". Talk about it with your team and live life large.

LisaSnow in reply to pops813 years ago

You made a good point about the differences in emotion the recipient feels - living donor vs. deceased donor. My transplant was a gift from a deceased donor, while I think of the person often I rarely feel attachment or guilt. However if it was donated to me from a living family/friend indeed I would feel more "responsible" for it. Thank you for highlighting this important difference.

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