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.

@rosemarya

taarthi, I saw this and I thought of you. Maybe it will give you and your husband as you both prepare for surgery.

Countdown to Living Donor Surgery: Key Steps
https://connect.mayoclinic.org/page/transplant/newsfeed/countdown-to-living-donor-surgery-key-steps/

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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

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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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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@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 Visualize increased good health for you and your husband. Visualize things you have been restricted by recently, and having those restrictions cleared away. Visualize the care and expertise of your surgeons involved in the upcoming procedures. Take deep breaths, and remind yourself that all will be okay. Relax into the miracle that medical technology allows us these days, with this upcoming transplant.
Ginger

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@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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@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

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@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

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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

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?

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@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

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