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Sevkira
@sevkira

Posts: 5
Joined: Jul 11, 2017

Kidney transplant

Posted by @sevkira, Jul 11, 2017

Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I’m struggling with weather dialysis is better or a transplant. I know any surgey has risks.

REPLY

@sevkira,, Hi and welcome to Connect. We are happy that you have trusted us with this very personal and important question.
I am a liver/kidney transplant recipient (2009) . However my kidney failure was acute and resulted in complete loss of kidney function. In my case, the choice was really no choice at all. I was put on regular dialysis treatment up until the transplant. My kidney along with my liver are from an anonymous donor. I have been blessed with good health and good kidney function ever since.
When I went in for my evaluation by the transplant team, they were so thorough that I don’t remember having many questions at all.

Here is a link to questions to ask your doctor related to end stage renal disease (ESRD) from Mayo Clinic
http://mayocl.in/2tFM3xc

This is a great question for the Transplant Group. http://mayocl.in/2tc8GpB
Rosemary

May I ask if it was through Mayo Clinic. That’s were I was referred

@sevkira, Yes, you may ask. I’m not sure what “it” you refer to. So, I’ll summarize it all: I was listed for a liver transplant in Kentucky. When my team detected possibility of bile duct cancer, I was deactivated until they could get a firm diagnosis about it. They could not, and then referred me to Mayo Rochester. I missed my appointment because 2 days prior to the scheduled appointment, I was in ICU with acute renal failure. I was started on dialysis to keep me alive until they could decide if they could do anything. Mayo agreed to see me. My only other option was hospice facility. I was transported by air ambulance to Mayo Rochester from ICU. I spent an additional 2 weeks in hospital while Mayo was able get me to the point that they could do the tests to screenings for cancer. With no cancer, I was approved for liver transplant.
During that time I was receiving dialysis treatment 3 days a week with the hope that my kidneys would gain some function – they did not. I was even fitted with a more permanent dialysis port to give them more time of maybe improving as some of my strength returned. Finally, it was decided by the kidney team that they were ‘beyond” any return to function. That is when the liver specialist that I was referred to, told my that I needed to make a very serious decision. I had 2 choices: 1- have a liver transplant and take a very risky gamble that the kidney might revive at some level of function. This includes the very real possibility of needing another surgery for a kidney and continued. Odds were stacked against me. 2 – ask for referral to the kidney transplant testing. Like I said, I really did not have a choice, but it was a very difficult thing to have to face. I feared the surgery. I feared the waiting, and the unknowing. This was all new to me and my husband.
But…now here’s the good part.
The compassion, and the expertise and knowledge of the transplant teams at Mayo are is so good at what they do, that they have all (or most) of the answers before you even think to ask them. They explain it to you. They tell you that there is no dumb question. And they, in my opinion, will be able to talk with you about this decision, as well as long term dialysis.
We are all different with different underlying conditions. And these can play a huge role in decisions and treatment. So keep on asking and learning.

Do you have an appointment scheduled yet?
Rosemary
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@sevkira, Hi, I am a kidney transplant recipient of 2 years and was on dialysis for about a year having tried both hemodialysis and Peritonial Dialysis. I am not a healthcare professional but having experienced both I may be able to offer my point of view.

@rosemarya

@sevkira, Yes, you may ask. I’m not sure what “it” you refer to. So, I’ll summarize it all: I was listed for a liver transplant in Kentucky. When my team detected possibility of bile duct cancer, I was deactivated until they could get a firm diagnosis about it. They could not, and then referred me to Mayo Rochester. I missed my appointment because 2 days prior to the scheduled appointment, I was in ICU with acute renal failure. I was started on dialysis to keep me alive until they could decide if they could do anything. Mayo agreed to see me. My only other option was hospice facility. I was transported by air ambulance to Mayo Rochester from ICU. I spent an additional 2 weeks in hospital while Mayo was able get me to the point that they could do the tests to screenings for cancer. With no cancer, I was approved for liver transplant.
During that time I was receiving dialysis treatment 3 days a week with the hope that my kidneys would gain some function – they did not. I was even fitted with a more permanent dialysis port to give them more time of maybe improving as some of my strength returned. Finally, it was decided by the kidney team that they were ‘beyond” any return to function. That is when the liver specialist that I was referred to, told my that I needed to make a very serious decision. I had 2 choices: 1- have a liver transplant and take a very risky gamble that the kidney might revive at some level of function. This includes the very real possibility of needing another surgery for a kidney and continued. Odds were stacked against me. 2 – ask for referral to the kidney transplant testing. Like I said, I really did not have a choice, but it was a very difficult thing to have to face. I feared the surgery. I feared the waiting, and the unknowing. This was all new to me and my husband.
But…now here’s the good part.
The compassion, and the expertise and knowledge of the transplant teams at Mayo are is so good at what they do, that they have all (or most) of the answers before you even think to ask them. They explain it to you. They tell you that there is no dumb question. And they, in my opinion, will be able to talk with you about this decision, as well as long term dialysis.
We are all different with different underlying conditions. And these can play a huge role in decisions and treatment. So keep on asking and learning.

Do you have an appointment scheduled yet?
Rosemary
.
.

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Yes late oct I will start my evaluation process…

Liked by michellemmm

Ok I was going to go with pd if I ever get to that point. I can’t see how I could go to a center I have a set work schedule don’t see how it would work without quitting my job. May I ask was your transplant through Mayo Clinic.

Yes, Mayo Clinic in Jacksonville, Fl

@peterm53

Yes, Mayo Clinic in Jacksonville, Fl

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Great that where I was referred.

@sevkira – I’m just joining this chat and saw your first question. I am due for a kidney transplant in about a year and hope to get one from a living donor. Of course every situation is different (I have PKD) and you should go by what the doctors say about your health but it is my understanding that a transplant is the better option if you are destined to be on dialysis. Dialysis, according to my research, only does 10% of the job of your kidney. A kidney transplant will give you a more complete/normal life. Furthermore, a transplant from a living donor may be preferable, if that is an option, because they last longer and usually start to work immediately. You are right, surgery has risks but dialysis is not without complications either so I would ask about the long term effects of dialysis (heart problems and being able to drink very little liquid are just two issues with dialysis). Either way you decide it is a big decision but Mayo will be a great source of information and will educate you with what is best in your circumstance. Best of luck!

@sevkira,, @lcamino, @peterm53,
I want to introduce you to @ca426 who is a kidney transplant recipient with a remarkable story that is a tribute to endurance and HOPE. I am going to step aside and let all of you get acquainted.

Hugs and Hope to all of you,
Rosemary

@IWantToBelieve

@sevkira – I’m just joining this chat and saw your first question. I am due for a kidney transplant in about a year and hope to get one from a living donor. Of course every situation is different (I have PKD) and you should go by what the doctors say about your health but it is my understanding that a transplant is the better option if you are destined to be on dialysis. Dialysis, according to my research, only does 10% of the job of your kidney. A kidney transplant will give you a more complete/normal life. Furthermore, a transplant from a living donor may be preferable, if that is an option, because they last longer and usually start to work immediately. You are right, surgery has risks but dialysis is not without complications either so I would ask about the long term effects of dialysis (heart problems and being able to drink very little liquid are just two issues with dialysis). Either way you decide it is a big decision but Mayo will be a great source of information and will educate you with what is best in your circumstance. Best of luck!

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I’ve had both PD and HEMO dialysis, I started on PD first and did very well, I had a machine that I used at home to do the exchanges ( PD is different from HEMO in that you exchange a dextrose solution through a tube in the peritoneal cavity) HEMO uses a shunt connecting an artery with a vein and insert needles to circulate your blood through a filter to clean , I was on HEMO for 13 years and it was very taxing on my body, but I had had three prior kidney transplants……long and short of it, a transplant is always, in my opinion the best option and obviously, living donor is best but with today’s technology and drugs a good cross match is what it comes down to and good doctors.

@IWantToBelieve

@sevkira – I’m just joining this chat and saw your first question. I am due for a kidney transplant in about a year and hope to get one from a living donor. Of course every situation is different (I have PKD) and you should go by what the doctors say about your health but it is my understanding that a transplant is the better option if you are destined to be on dialysis. Dialysis, according to my research, only does 10% of the job of your kidney. A kidney transplant will give you a more complete/normal life. Furthermore, a transplant from a living donor may be preferable, if that is an option, because they last longer and usually start to work immediately. You are right, surgery has risks but dialysis is not without complications either so I would ask about the long term effects of dialysis (heart problems and being able to drink very little liquid are just two issues with dialysis). Either way you decide it is a big decision but Mayo will be a great source of information and will educate you with what is best in your circumstance. Best of luck!

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@ca426 – It sounds like you have been through a lot! Although I don’t want your experience, your story gives me hope that I will be able to manage my upcoming transplant. Best of health to you.

@lcamino, and kidney patients,
Recently a member made a comment in a different transplant thread that I feel might be informative in this thread about kidney transplant. I think that whether someone has PKD; is waiting for a transplant; has received a kidney transplant; and family and loved ones might benefit with a place to ask questions and share their experiences with polycystic kidney disease (PKD).

I invite members to join in with any questions or experiences.
Rosemary

Liked by IWantToBelieve

@rosemarya – I’d love to read what you are referring to. Do you have a link?

@rosemarya

@lcamino, and kidney patients,
Recently a member made a comment in a different transplant thread that I feel might be informative in this thread about kidney transplant. I think that whether someone has PKD; is waiting for a transplant; has received a kidney transplant; and family and loved ones might benefit with a place to ask questions and share their experiences with polycystic kidney disease (PKD).

I invite members to join in with any questions or experiences.
Rosemary

Jump to this post

I’d also like to tag @coastalgirl @mattgnyc , and invite them to join this discussion and share their experiences and insights about polycystic kidney disease (PKD).

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