1. < Transplants
Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Feb 24, 2018
In reply to @rosemarya "@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in..." + (show)
@rosemarya

@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in the Kidney Bladder Group that you received your kidney transplant in 2013!
I would like to invite you to join in any of our conversations. I especially welcome you in anything related to kidney transplant. I could really use your 'expertise ' in that area.
I have a liver/kidney transplant (2009). Liver took out the kidney in acute kidney failure. So I have a concern to share with you. I never had uti's before my transplant that I can remember. And now, since my transplant I have had several. In fact getting over one now.
What is your experience about this?
Rosemary

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@rosemarya Although my doctors did consider that to be a possibility they felt that I was too young for that to be the probable cause. Anything is possible though.
JK

REPLY
JK | @contentandwell | Feb 24, 2018
In reply to @rosemarya "@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in..." + (show)
@rosemarya

@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in the Kidney Bladder Group that you received your kidney transplant in 2013!
I would like to invite you to join in any of our conversations. I especially welcome you in anything related to kidney transplant. I could really use your 'expertise ' in that area.
I have a liver/kidney transplant (2009). Liver took out the kidney in acute kidney failure. So I have a concern to share with you. I never had uti's before my transplant that I can remember. And now, since my transplant I have had several. In fact getting over one now.
What is your experience about this?
Rosemary

Jump to this post

@rosemarya if a hot tub is well maintained there should not be a problem. At my club they test the water about every two hours but of course things can happen between testings and if there is any bacteria present, being on immunosuppressants will impede your defenses from rejecting them. I would never use one at a hotel now, but as I mentioned, if I see that the hot tub is vacant for a long time while I am in the pool I do occasionally take a dip, it is so relaxing and after the colder water of the pool the hot water in the tub feels good. Most of the time I just get warm in the sauna though.
JK

REPLY
JK | @contentandwell | Feb 24, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

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@2011panc prayers are with you as you head for your back surgery. I am surprised that your insurance refused coverage and glad that you have found a way to get it done by changing insurance companies. May I ask where you from, the locale where you are having your back surgery done? I always find it interesting to hear where we all are from. As I have mentioned on a number of posts, I live in southern NH, about 55 miles from Boston, and Boston is where I go for anything off any consequence. I feel so fortunate to have such wonderful medical facilities within an hour or two away -- an hour with no traffic, two hours mid-day.
I had a knee replacement in October, which of course is different from back surgery, but my being a transplant recipient did not seem to effect that at all. The only effect I believe was that I could not take NSAIDs so I had to go from narcotics to a limited amount of tylenol, which I do not find very effective. The hospital I used for the knee, Brigham and Women's, is a partner hospital with Mass General so there was an easy communication between them and they are on the same portal.
Let us know as soon as you are able how the surgery goes and how you are feeling, we will be thinking of you.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2018
In reply to @rosemarya "@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything..." + (show)
@rosemarya

@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything you need to know about your tests and procedures. It is either mailed, or given when you arrive for registration.
Be prepared for a marathon-like adventure! Dress comfortably, and carry a light jacket or sweater. Don't be alarmed if you schedule is changed as you proceed through the testing. Sometimes things are added and rearranged, but you will be informed as the day goes on.
I'll be thinking about you.
Rosemary

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@rose999, Good for you - The online app is great! If you need further tests, I can assure you that you will be scheduled for them. There is a lot of 'behind the scene' communication between the departments at Mayo, so even if you are not scheduled in a particular department, I feel very confident to say that it can be addressed. If you are ever in doubt about a particular concern, be sure to discuss it with the doctor, NP, PA who will be seeing you.
I like your attitude - you say that you are excited about the upcoming visit:-)
I do not know what a study visit is. That is a term that I am unfamiliar with. Maybe you can let me know after you return home!
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2018
In reply to @rosemarya "@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in..." + (show)
@rosemarya

@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in the Kidney Bladder Group that you received your kidney transplant in 2013!
I would like to invite you to join in any of our conversations. I especially welcome you in anything related to kidney transplant. I could really use your 'expertise ' in that area.
I have a liver/kidney transplant (2009). Liver took out the kidney in acute kidney failure. So I have a concern to share with you. I never had uti's before my transplant that I can remember. And now, since my transplant I have had several. In fact getting over one now.
What is your experience about this?
Rosemary

Jump to this post

@2011panc, We observed similar UTI / cognition issues with my mother-in-law. Nursing home noticed the unusual behavior, and after treatment, she improved.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2018
In reply to @rosemarya "@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in..." + (show)
@rosemarya

@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in the Kidney Bladder Group that you received your kidney transplant in 2013!
I would like to invite you to join in any of our conversations. I especially welcome you in anything related to kidney transplant. I could really use your 'expertise ' in that area.
I have a liver/kidney transplant (2009). Liver took out the kidney in acute kidney failure. So I have a concern to share with you. I never had uti's before my transplant that I can remember. And now, since my transplant I have had several. In fact getting over one now.
What is your experience about this?
Rosemary

Jump to this post

@contentandwell, I do not use pools or hot tubs. I suspect that the immunosuppression has some effect on it - or maybe it is my alertness to any physical change from what I consider to be normal for me.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

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@2011panc, Prayers for your husband, too.

REPLY
2011panc | @2011panc | Feb 24, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

Jump to this post

@rosemarya Thank you. I will be having this surgery closer to home and by the first surgeon that saw me. I have no idea how or if my transplant will affect my recovery. At this point my main concern is protecting my failing kidneys and maintaining the transplant already in place should not be an issue. If it does become an issue, we will have to deal with it then, right? lol I am relieved to be closer to home following this surgery. May continuing concern is for my husband. He is a trooper, but these things wear on him.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

Jump to this post

@2011panc, I am also hopeful for a resolution to your pain. I know that you have struggled with this for a long time. I am going to pray for you and for all of the members of your medical team.
Will you be traveling to Rochester for this?
Have they told you whether you can anticipate a "normal" recovery, or does your transplant affect this, too?

If you haven't already met our moderator, Justin, @JustinMcClanahan , I would like to introduce you to him. I know that you have a history of self advocacy and self care, but he is our moderator in Bones, Joints and Muscles. I know that he would welcome any questions that you might still have.

Gentle hug,
Rosemary

REPLY
2011panc | @2011panc | Feb 24, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

Jump to this post

@rose999 Thank you.

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