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.

@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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@colleenyoung thanks, Colleen. I do keep some sanitizing wipes with me and thoroughly clean the tray table and areas I will be touching. Reading that article almost makes me dread traveling though. The germs, along with the fact that something shows up causing me to get patted down on every flight I have taken in the last 13 months, makes it a lot less pleasurable, not to mention the size of the airports! When we flew to Denver my tracker told me I walked over 9000 steps, and that was in the airport because all of our flights and luggage were at the furthest place.
JK

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@rosemarya

taarthi, Have you discussed the anxiety and lack of sleep with your transplant team? They might have some ideas or options for your particular situation.
I did not want to think about the surgery, either. So I tried to envision myself going into the surgery, going to sleep, and waking up. Since I was so very tired all the time, the idea of a long sound sleep was appealing to me.

How are you doing physically? Are you feeling okay? Are you able to be partly active with your daughter?

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For most days, I am able to manage my daily activities, cook, clean, sit and play with my daughter, drop her at daycare. Somedays, the tiredness is unmanageable that I can hardly walk. Those days, I tend to get into a bad mood as I am overwhelmed by the things that I have to do especially with my daughter. Of course, I feel horribly guilty to feel that way about my daughter but in that moment all I want to do is rest but I force myself to do the minimum for my daughter. I have an amazing husband who picks up tasks on those days but if my daughter (2.5 years old) cries that only mommy has to play with her, there is nothing he can do.

I am looking forward to the rest I am going to get after transplant. I secretly dream about those days, LOL. when I can sleep as long as I could and rest and do nothing.

I have not spoken with my transplant team about my anxiety. I am trying to manage it myself. 52 more days to go until my surgery! I cannot wait to get it done with 🙂

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@taarthi

For most days, I am able to manage my daily activities, cook, clean, sit and play with my daughter, drop her at daycare. Somedays, the tiredness is unmanageable that I can hardly walk. Those days, I tend to get into a bad mood as I am overwhelmed by the things that I have to do especially with my daughter. Of course, I feel horribly guilty to feel that way about my daughter but in that moment all I want to do is rest but I force myself to do the minimum for my daughter. I have an amazing husband who picks up tasks on those days but if my daughter (2.5 years old) cries that only mommy has to play with her, there is nothing he can do.

I am looking forward to the rest I am going to get after transplant. I secretly dream about those days, LOL. when I can sleep as long as I could and rest and do nothing.

I have not spoken with my transplant team about my anxiety. I am trying to manage it myself. 52 more days to go until my surgery! I cannot wait to get it done with 🙂

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Thinking of you and sending good thoughts you way.

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@taarthi

For most days, I am able to manage my daily activities, cook, clean, sit and play with my daughter, drop her at daycare. Somedays, the tiredness is unmanageable that I can hardly walk. Those days, I tend to get into a bad mood as I am overwhelmed by the things that I have to do especially with my daughter. Of course, I feel horribly guilty to feel that way about my daughter but in that moment all I want to do is rest but I force myself to do the minimum for my daughter. I have an amazing husband who picks up tasks on those days but if my daughter (2.5 years old) cries that only mommy has to play with her, there is nothing he can do.

I am looking forward to the rest I am going to get after transplant. I secretly dream about those days, LOL. when I can sleep as long as I could and rest and do nothing.

I have not spoken with my transplant team about my anxiety. I am trying to manage it myself. 52 more days to go until my surgery! I cannot wait to get it done with 🙂

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Taarthi, Try not to be so hard on yourself. You are very sick, and you are a mommy, and a wife. That You have a lot going on, but I'm sure you know that already. Remember that is temporary.

Your health, and your daughter come ahead of all the other things. Your dear husband, will understand that and he can do the other house keeping things (I know that it is hard to turn the dishes, laundry, cooking over to someone else. But this is a time that you are going to just have to do it.

- Please ask someone for some help! I would start with your caregiver - Who is your transplant caregiver? Is he/she aware of your feelings? Do you have a friend or church members, neighbor, or relative who can help you out by playing or reading to her so you can 'just sit'. I know that you probably don't have energy for much more that that and she would probably enjoy the extra attention, too.

I am 9 years post transplant, and a grandma. I want to stress to you that one of the best things that I learned from my transplant experience is that it is OK to ask for help. It is OK, and encouraged to talk to your transplant nurse coordinator or a doctor. They have seen all of these emotions and struggles before. They should be able to provide some guidance, since they know your condition the best.

And you are always welcome to come here on Connect, and let it all out. We understand, and we want to support you, just like someone supported us.
I really care about you and I am sending you a virtual hug.
I'm counting off the days with you.

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@taarthi

For most days, I am able to manage my daily activities, cook, clean, sit and play with my daughter, drop her at daycare. Somedays, the tiredness is unmanageable that I can hardly walk. Those days, I tend to get into a bad mood as I am overwhelmed by the things that I have to do especially with my daughter. Of course, I feel horribly guilty to feel that way about my daughter but in that moment all I want to do is rest but I force myself to do the minimum for my daughter. I have an amazing husband who picks up tasks on those days but if my daughter (2.5 years old) cries that only mommy has to play with her, there is nothing he can do.

I am looking forward to the rest I am going to get after transplant. I secretly dream about those days, LOL. when I can sleep as long as I could and rest and do nothing.

I have not spoken with my transplant team about my anxiety. I am trying to manage it myself. 52 more days to go until my surgery! I cannot wait to get it done with 🙂

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@taarthi don’t beat yourself up over it. You need the rest now, and thankfully it won’t be too long before you are on the other side of transplant. I am sure it must be very difficult having such a young child but her great mommy will be back very soon.
JK

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@rosemarya

Taarthi, Try not to be so hard on yourself. You are very sick, and you are a mommy, and a wife. That You have a lot going on, but I'm sure you know that already. Remember that is temporary.

Your health, and your daughter come ahead of all the other things. Your dear husband, will understand that and he can do the other house keeping things (I know that it is hard to turn the dishes, laundry, cooking over to someone else. But this is a time that you are going to just have to do it.

- Please ask someone for some help! I would start with your caregiver - Who is your transplant caregiver? Is he/she aware of your feelings? Do you have a friend or church members, neighbor, or relative who can help you out by playing or reading to her so you can 'just sit'. I know that you probably don't have energy for much more that that and she would probably enjoy the extra attention, too.

I am 9 years post transplant, and a grandma. I want to stress to you that one of the best things that I learned from my transplant experience is that it is OK to ask for help. It is OK, and encouraged to talk to your transplant nurse coordinator or a doctor. They have seen all of these emotions and struggles before. They should be able to provide some guidance, since they know your condition the best.

And you are always welcome to come here on Connect, and let it all out. We understand, and we want to support you, just like someone supported us.
I really care about you and I am sending you a virtual hug.
I'm counting off the days with you.

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taarthi, I forgot to add - It is ok to cry. I cried often.
Early in our journey, my husband made me promise him that I would not go off to cry alone. We shared many tears together as we held on to each other for support.
Hugs

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@rosemarya

taarthi, I forgot to add - It is ok to cry. I cried often.
Early in our journey, my husband made me promise him that I would not go off to cry alone. We shared many tears together as we held on to each other for support.
Hugs

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@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

@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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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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@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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gaylea,
As you may or may not know, I had a dialysis treatment before the surgery. During that time, the anesthesiologist came to visit me. He explained to me exactly what he would be doing to me before and during the surgery. He asked me if I had any concerns or questions. My main concern was that I didn't want to feel anything, or be aware of anything. I just wanted to fall asleep, and then to wake up. He assured me that that was exactly what he was there to do. He added that I didn't need to worry about anything. And that is exactly what happened.
I have only a vague awareness of people moving around me and voices as I was waking. My favorite voice was my son saying, "Mom, you're not yellow!" The breathing tube was already gone.
I was amazed at how everything (liver and kidney transplant) seemed to happen in the blink of an eye.

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@rosemarya

gaylea,
As you may or may not know, I had a dialysis treatment before the surgery. During that time, the anesthesiologist came to visit me. He explained to me exactly what he would be doing to me before and during the surgery. He asked me if I had any concerns or questions. My main concern was that I didn't want to feel anything, or be aware of anything. I just wanted to fall asleep, and then to wake up. He assured me that that was exactly what he was there to do. He added that I didn't need to worry about anything. And that is exactly what happened.
I have only a vague awareness of people moving around me and voices as I was waking. My favorite voice was my son saying, "Mom, you're not yellow!" The breathing tube was already gone.
I was amazed at how everything (liver and kidney transplant) seemed to happen in the blink of an eye.

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@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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