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This and That and Talk - My Transplant

Posted by @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?

REPLY

@taarthi @mauraacro squashing and boxing feelings are my specialty!
I do understand your nerves as both our daughter and myself had workups to see if we could donate part of our liver to my husband. Neither of us could, but while we waited to find out I experienced a lot of worry. I was more worried about everyone else than me, of course! Lol From all I have read on here, there is little to worry about, so take a deep breath. Give it over to your Higher Power and plan for when the two of you are home recouping. The doctors are the best in the world.

Many blessings,
JoDee

@taarthi

Thank you! That link was very useful and so were the other links you shared in the forum. Any tips on handling the anxiety? I am not able to sleep now a days as my heart and brain are racing visualizing the days of my surgery and there after. I am trying to focus on my work, my daughter and household chores to keep myself busy. I have lived with the kidney condition for 15 years and I was very good at boxing things and focusing on the "Now". But it is getting very hard as I get closer to the surgery date. My husband is my donor and we both will be under knives on the same day and my brain plays evil tricks on me :(. Sorry for the rant but anybody who has been through a similar situation, would you mind sharing how you managed the days before the surgery and stayed positive? Thanks in advance!

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@taarthi I guess it's almost a blessing to be waiting for a cadaver donor! I had no time to dwell on it, they called and off we went!

I am sure the others are right though, visualize the positive things. Of course, that's easier said than done, or at least it would be for me.
JK

Liked by taarthi

Thank you thank you thank you to everyone who replied to my post!! My eyes welled up reading all your responses. This is just amazing to hear from people who have been through this. People around me mean well but they have not been through this. They sometimes don't know what to say or say the wrong thing (Of course with good intentions). I am finding myself being so unstable emotionally as I am emotional, anxious, guilty and what not. On top of this, all these emotions are not letting me sleep making the situation worse. I appreciate all your responses and I will read them over and over again as they help me relax, LOL. Thanks again 🙂

@taarthi

Thank you! That link was very useful and so were the other links you shared in the forum. Any tips on handling the anxiety? I am not able to sleep now a days as my heart and brain are racing visualizing the days of my surgery and there after. I am trying to focus on my work, my daughter and household chores to keep myself busy. I have lived with the kidney condition for 15 years and I was very good at boxing things and focusing on the "Now". But it is getting very hard as I get closer to the surgery date. My husband is my donor and we both will be under knives on the same day and my brain plays evil tricks on me :(. Sorry for the rant but anybody who has been through a similar situation, would you mind sharing how you managed the days before the surgery and stayed positive? Thanks in advance!

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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?

@taarthi @rosemarya Rosemary, you sure have that right. I was exhausted, taking two naps a day. Of course it reached a whole different level when my hemoglobin and hematocrit went dangerously low. I am sure I have mentioned it before, but they took me to Boston in an ambulance for fear of something happening- I was told at the local hospital the counts were so low I could have had a cardiac arrest.

I actually felt ok and enjoyed the ride chatting with a very nice EMT. I had been about to serve dinner to guests when I got the call that I had to get to the hospital immediately. Word somehow got to MGH that I had guests for dinner. One of the woman doctors was stunned and said if her counts were as low as mine she would have been flat on her back! Admittedly I couldn’t go up the whole flight of stairs without stopping to rest.

I had a few days of rest in the hospital having blood transfusions while they tested me for everything trying to figure out the cause.
JK

@mauraacro

@taarthi, I think I have the equivalent of a Master's degree in boxing things up. Surgery was one of the few times that focusing on the "now" instead of on the surgery made sense for me.
After freaking myself out about surgery details, I realized I didn't need to know any more of the medical side of it. My surgeon and his staff were experienced, I had completed dozens of tests, been cleared by many doctors, and approved for surgery by a donor board. Mayo is the best and I feel like they truly cared for (and about) me but really, if they didn't think it would work out for you and your husband, they wouldn't risk their reputation on a surgery that isn't likely to succeed.
Look how lucky you are at all the things you can focus on besides the surgery! I don't have as many details about the recipient side of things but I know a lot of things that Moms plan when they'll be off their routine for a while, especially during the holidays. Getting ready to go and preparing for help for a few weeks after you get back can occupy a lot of your brain, As helpful as your husband may be, he won't be able to lift more than 10# for 6 weeks. That means you may need a plan for shopping and any holiday prep you want done as well as cleaning and help with your child.
Someone in your family will probably get sick, it happens. My recipient had quite few infections that she didn't even know about until test results came in but the doctors were on top of it, they are on your side and want you to succeed. Every week will be different but every week will also get you closer to a new healthy life.

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mauraacro, It is always good to hear from you. Your experience is our best teacher. Thank you for sharing it.

Liked by mauraacro

@cmael

I had my kidney transplant 7 months ago and my daughter was the donor. I remember how scary it was before, anticipating the day. We were together in preop and I was shaking. I was asked more than once if I had tremors. What was helpful was my daughter’s enthusiasm. She was actually looking forward to it and the time off work for r & r. We rented a house in Rochester for the long stay there and had family taking care of me and my husband who has dementia. Today I feel great and can’t believe that I had a transplant, which has been my biggest fear for 20 yrs. The low belly pain, when standing or walking lasted for about 7 weeks. Try to concentrate on after the surgery and your great new life. I’m so grateful that I was so fortunate to have the transplant with such a wonderful donor as I was too old to get on a list.

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cmael, I don't remember reading this anywhere – Does your daughter have any young children? This seems to be another thing that taarthi is concerned about.

😊 I want to make your life easier! With Connect's new system, you don't need to copy the @name because the person that you reply to will automatically get the email 😊

@rosemarya

cmael, I don't remember reading this anywhere – Does your daughter have any young children? This seems to be another thing that taarthi is concerned about.

😊 I want to make your life easier! With Connect's new system, you don't need to copy the @name because the person that you reply to will automatically get the email 😊

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No, our grandchildren are all grown. My family knows that if anyone is sick, they need to stay away. However, that being said, my grandson got married in California 2 1/2 mos after my transplant. I asked my nephrologist if it would be alright for me to go and go by air. He said that would be ok. I go out and about quite a bit and worked as an election judge at a nursing home, the primaries and the general election. I haven’t been sick at all, but of course try to be cautious. We also have two dogs and two cats. I wash my hands often. I hope that helps with the fear of living with a transplant.

@taarthi

Thank you thank you thank you to everyone who replied to my post!! My eyes welled up reading all your responses. This is just amazing to hear from people who have been through this. People around me mean well but they have not been through this. They sometimes don't know what to say or say the wrong thing (Of course with good intentions). I am finding myself being so unstable emotionally as I am emotional, anxious, guilty and what not. On top of this, all these emotions are not letting me sleep making the situation worse. I appreciate all your responses and I will read them over and over again as they help me relax, LOL. Thanks again 🙂

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@taarthi, I wonder if you might benefit from some of the relaxation tips that members have shared in the Sleep Health group on Connect (https://connect.mayoclinic.org/group/sleep-health/)

I found this discussion particularly helpful with quite a variety of tips and approaches
– Meditation prior to sleep https://connect.mayoclinic.org/discussion/meditation-prior-to-sleep/

@cmael

No, our grandchildren are all grown. My family knows that if anyone is sick, they need to stay away. However, that being said, my grandson got married in California 2 1/2 mos after my transplant. I asked my nephrologist if it would be alright for me to go and go by air. He said that would be ok. I go out and about quite a bit and worked as an election judge at a nursing home, the primaries and the general election. I haven’t been sick at all, but of course try to be cautious. We also have two dogs and two cats. I wash my hands often. I hope that helps with the fear of living with a transplant.

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@cmael it's funny how the wait for the transplant is so overwhelming but then the thought of life afterwards is so daunting. And there is the thought of the actual surgery and recovery. I am glad that so many who have already gone through the whole process assure me that life afterwards is so beneficial. There are a lot of wonderful people here to encourage us to stay strong.

@cmael

No, our grandchildren are all grown. My family knows that if anyone is sick, they need to stay away. However, that being said, my grandson got married in California 2 1/2 mos after my transplant. I asked my nephrologist if it would be alright for me to go and go by air. He said that would be ok. I go out and about quite a bit and worked as an election judge at a nursing home, the primaries and the general election. I haven’t been sick at all, but of course try to be cautious. We also have two dogs and two cats. I wash my hands often. I hope that helps with the fear of living with a transplant.

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@cmael My transplant team told me not to travel domestically for 6 months, and a year internationally. I think they take a hard line but if you are doing well they will give you some leeway. As it turned out there was no pressing need to travel within that time so I did no travel for a year.
Were you told to wear a mask when flying? I got some at CVS that had an antiviral coating.
An interesting thing I read somewhere, not specific to post transplant patients – the window seats have fewer germs than the aisle seats! There is a larger concentration of germs floating around where there is more open space. Unfortunately I have somewhat of an incontinence problem so if I sit by the window I have to disrupt people.
JK

@contentandwell

@cmael My transplant team told me not to travel domestically for 6 months, and a year internationally. I think they take a hard line but if you are doing well they will give you some leeway. As it turned out there was no pressing need to travel within that time so I did no travel for a year.
Were you told to wear a mask when flying? I got some at CVS that had an antiviral coating.
An interesting thing I read somewhere, not specific to post transplant patients – the window seats have fewer germs than the aisle seats! There is a larger concentration of germs floating around where there is more open space. Unfortunately I have somewhat of an incontinence problem so if I sit by the window I have to disrupt people.
JK

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Actually, I asked about a mask and he said that wasn’t necessary, but it was up to me. I mentioned that I’ve seen several patients with masks in the transplant dr appt’s waiting area. He said those are mostly cancer patients. I did see recently that the window seats have less germs, I also have a pretty ID bracelet with my Mayo patient no., contact info etc on it, just in case.

@cmael

Actually, I asked about a mask and he said that wasn’t necessary, but it was up to me. I mentioned that I’ve seen several patients with masks in the transplant dr appt’s waiting area. He said those are mostly cancer patients. I did see recently that the window seats have less germs, I also have a pretty ID bracelet with my Mayo patient no., contact info etc on it, just in case.

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I don’t know why the transplant dr I saw seemed pretty relaxed about my traveling, but then again I think of all of the people we come in contact with while traveling through the halls and elevators at Mayo.

@cmael

I don’t know why the transplant dr I saw seemed pretty relaxed about my traveling, but then again I think of all of the people we come in contact with while traveling through the halls and elevators at Mayo.

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Hi I'm glinda a heart transplant patient going on 8 years post transplant just wanted to let you I don't need a mask anymore but I still wear one anytime I go out or to appointments I won't take chances with my heart as I have first hand experience on how dangerous bacteria, and viruses can be especially the cold viruses as that's what destroyed my original heart so I say wear the mask if you want to and if you feel safer with it I don't go out of my apartment without mine on glinda

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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