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.

@cmael

I had my transplant 7 mos ago and I can tell you that the last thing I remember was starting to get a spinal and the first thing after surgery was in recovery. Be sure to let the anesthesiologist know about your concerns. I told him about my problem with nausea. They will come up with a plan to address them. I also was asked about the last thing I remember prior and the first after.

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@cmael i will definitely let the anesrhesiologist know about my comcerns. I too am prone to nausea so i will tell him that too. I understand that pain medication is immediately administered as well.

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@gaylea1

@rosemarya thank you so much for sharing your experience with me. You helped alleviate my fear. I hope that when I wake up I will have my son and daughter there. They have helped through this long journey and been my beacon. I didnt know they could be there at that time but I will definitely request that they are.

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gaylea, Mayo Rochester, where I transplanted is a 13 hour drive from our home. My husband and I were already living in the Gift of Life House at the time of my transplant. Our 2 sons and (future) daughter-in-law drove to Rochester to spend a week visiting with us. I felt so bad, I really did not want to see them, or anybody. They arrived on a Monday night, and I received my Call on Wed morning at 6:42 AM. They were with my husband during the surgery.
And they were with me to join in prayers and blessing with the hospital chaplain. I felt peaceful going into the surgery.

There are limits to when and where you will be able to have someone with you. The preparations for the surgery will be the priority, of course. But depending on the time schedule, they should be able to make short visits - that is basically what happened in my situation. But those short visits meant everything to me! Even my dear husband/caregiver was ousted from the room occasionally, but never far away.

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@colleenyoung

Here's an article and podcast about
Germs on a plane: How to stay healthy while travelling https://www.cbc.ca/radio/thecurrent/the-current-for-december-21-2017-1.4458465/germs-on-a-plane-how-to-stay-healthy-while-travelling-1.4458761

The biggest culprits are the:
- toilets
- food trays
- overhead compartments

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Every time I travel, I can hear my mom saying, "Don't touch!" and "Wash your hands!"

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@gaylea1

@rosemarya I have a quick question to ask you. I am overcoming my anxiety about the surgery except for one part. I am afraid that I will be awake when the breathing tube goes in and waking to having the breathing tube still in place. I have had a few nasty experiences where I wasn't completely sedated and choking on the breathing tube as it was inserted. I'm also afraid of waking and choking on the tube. Do they wait until you are totally out to insert the tube and do they remove it prior to waking?

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@gaylea1 somewhere else on Connect another member suggested bringing a history of your general anesthesia experiences with you to share with the anesthesiologist. How you've felt or reacted in the past can be useful information for them. Perhaps you could write things down and put it in your bag.

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@gaylea1

@rosemarya I have a quick question to ask you. I am overcoming my anxiety about the surgery except for one part. I am afraid that I will be awake when the breathing tube goes in and waking to having the breathing tube still in place. I have had a few nasty experiences where I wasn't completely sedated and choking on the breathing tube as it was inserted. I'm also afraid of waking and choking on the tube. Do they wait until you are totally out to insert the tube and do they remove it prior to waking?

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@gaylea1 this may sound strange, but I have no memory of having a breathing tube! I suppose I must have but I was very out of it, and I think that is probably typical.
JK

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@rosemarya

gaylea, Mayo Rochester, where I transplanted is a 13 hour drive from our home. My husband and I were already living in the Gift of Life House at the time of my transplant. Our 2 sons and (future) daughter-in-law drove to Rochester to spend a week visiting with us. I felt so bad, I really did not want to see them, or anybody. They arrived on a Monday night, and I received my Call on Wed morning at 6:42 AM. They were with my husband during the surgery.
And they were with me to join in prayers and blessing with the hospital chaplain. I felt peaceful going into the surgery.

There are limits to when and where you will be able to have someone with you. The preparations for the surgery will be the priority, of course. But depending on the time schedule, they should be able to make short visits - that is basically what happened in my situation. But those short visits meant everything to me! Even my dear husband/caregiver was ousted from the room occasionally, but never far away.

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@gaylea1 @rosemarya I was told there were strict limits on visitors when I would be in ICU so I told both my son and daughter not to bother visiting and I was glad I did. I was so exhausted that I often even tried to get my husband to leave but he would stay for a long time even when I was sleeping. I wanted him to get out of there because it’s over an hour drive home, he would not stay in a hotel, and I was afraid of him nodding off on the drive home. He did finally get to the point where he didn’t come until late morning.
JK

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@contentandwell

@gaylea1 @rosemarya I was told there were strict limits on visitors when I would be in ICU so I told both my son and daughter not to bother visiting and I was glad I did. I was so exhausted that I often even tried to get my husband to leave but he would stay for a long time even when I was sleeping. I wanted him to get out of there because it’s over an hour drive home, he would not stay in a hotel, and I was afraid of him nodding off on the drive home. He did finally get to the point where he didn’t come until late morning.
JK

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@contentandwell My children didn't leave my bedside for 3 weeks when I went into my first HE episode that almost killed me. They slept on a cot beside me and took turns watching me so that I wouldn't be alone. They hold my Power of Attorney for personal care and had every doctor and nurse explain what and why procedures were done. I was in no condition to understand anything going on. When I was released from hospital my daughter took me to her house for 4 months as I started to walk and eat again. They talk to me every day and keep tabs on me. I can't imagine waking up without them there. They have put aside time from work to be with me post surgery leaving their jobs and homes. I will forever be grateful to them. They are my gems.

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@rosemarya

Every time I travel, I can hear my mom saying, "Don't touch!" and "Wash your hands!"

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@rosemarya When we were children and went to Boston we had to wear little white gloves, the type little girls always wore to church back then. That way touching the escalator handrails and anything else, we wouldn't get germs. I don't know if that was because that was when the polio epidemic was rampant or if my mother would have done it anyway.
JK

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@gaylea1

@contentandwell My children didn't leave my bedside for 3 weeks when I went into my first HE episode that almost killed me. They slept on a cot beside me and took turns watching me so that I wouldn't be alone. They hold my Power of Attorney for personal care and had every doctor and nurse explain what and why procedures were done. I was in no condition to understand anything going on. When I was released from hospital my daughter took me to her house for 4 months as I started to walk and eat again. They talk to me every day and keep tabs on me. I can't imagine waking up without them there. They have put aside time from work to be with me post surgery leaving their jobs and homes. I will forever be grateful to them. They are my gems.

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@gaylea1 Your children certainly are devoted to you, that's wonderful.

My husband took the reins and was here with me most of the time, but since my HE episodes were pretty distinct he did not need to be here all of the time. He works two days a week and continued to do that, and I was able to continue driving, shopping, and going to my health club. I even drove back and forth to our place on a lake in the summer of 2015 but I told my husband before the summer started in 2016 that I was no longer comfortable driving for a long distance which surprised him. Prior to an HE episode, I could feel it coming on so being close to home I would just get right back here.

My daughter did come and stay with me once when my husband went off to visit our son who was at that time living in CA. Since they both live a distance they did what they could do and I discouraged them from doing anything more since my husband was handling things very well.
JK

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@contentandwell

@gaylea1 Your children certainly are devoted to you, that's wonderful.

My husband took the reins and was here with me most of the time, but since my HE episodes were pretty distinct he did not need to be here all of the time. He works two days a week and continued to do that, and I was able to continue driving, shopping, and going to my health club. I even drove back and forth to our place on a lake in the summer of 2015 but I told my husband before the summer started in 2016 that I was no longer comfortable driving for a long distance which surprised him. Prior to an HE episode, I could feel it coming on so being close to home I would just get right back here.

My daughter did come and stay with me once when my husband went off to visit our son who was at that time living in CA. Since they both live a distance they did what they could do and I discouraged them from doing anything more since my husband was handling things very well.
JK

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@contentandwell it's wonderful to have such great support. I'm sure your husband and children are happy to see you doing well.

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