1. < Transplants

Feeling depressed 2 years after successful transplant

Posted by krsunny1 @krsunny1, Apr 4, 2022

I had a successful double lung transplant in 2019.
Over the past few years, I ‘ve struggled a lot with side effects of the transplant medications. Thankfully, I am beginning to feel better physically and am gaining strength. My issue is that I have started feeling very lonely and sad. Not sure exactly why, but it could be because I retired about a year ago and I have a lot of free time. Curious to know if any other transplant patients have experienced the same thing.

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

Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 8, 2022
In reply to @stephanierp "Yes, yes and yes:) I am two years post kidney transplant and have dealt with a..." + (show)
@stephanierp

Yes, yes and yes:) I am two years post kidney transplant and have dealt with a lot of emotions, I don't always know what to do with. I believe they arise from a combination of things. Certainly, the roller coaster of feeling your Life Energy slowly leaving, day by day, as your body prepares to die from organ failure; then experiencing the immediacy of Life coming back to you, by way of a gift you can never repay..... it is amazing, terrifying, and life altering. I would imagine a lot of us are in those in-between years of - not old but certainly not young - with children leaving our homes and starting their new lives. Many have faced career changes and/or retirement. Our old lives don't really fit anymore. Which can lead to some depressed thoughts and feelings, to which I always respond, "How can you feel anything but gratitude to be alive?" Which then leads to guilt.

I think transplant is a lot of things. It is a miracle. It is an amazing gift of life, which I have done nothing to particularly earn, nor can I repay it. It is an adjustment to living with, what often feels like a pregnancy to me - carrying something that is not really of my body. It is taking anti-rejection drugs that keep my body damped down , not exactly at the top of its game - where it would destroy my new organ - but functioning higher than it was before surgery. I have not cured my body. I have altered it, added to it. It's a lot to process. I think the body springs back from transplant in a matter of hours but the psyche has to catch up and it takes a while. And I think it is important to allow ourselves time to feel sad about the parts of our life that we no longer have. We have experienced loss, trauma, and a miracle.

I know the end of one chapter in Life, is the beginning of a new one, and the attitude we choose to, either embrace it or shrink from it, will greatly influence what that Life looks like. I am trying to redefine my role at work, to more of a part-time endeavor. I am working out most days, building muscle, as it is suddenly very important to me to feel Strong. I am spending more time in Nature. I am making time to do the things I longed to do, when I was in kidney failure and could barely walk across a room without having to sit down to catch my breath. And each week, I see at least one friend for tea, a nature walk, crafts, or at book club.

Blessings on your journey!

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@stephanierp Wow! a very profound post. Thank you so much for saying what many may not have been able to put in to such eloquent wording. My husband is a kidney recipient as of October 2016.
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 11, 2022

@krsunny1,
I retired early, too. My strength, patience, and desire to be in a classroom of middle schoolers had become more than I could handle as my liver disease progressed and fatigue became my life. I had one year of retirement before I was listed for my liver transplant and my health went into a downward spiral. After my transplant, liver and kidney, I felt whole again and was able to enjoy my retirement.
I remember the advice from some dear friends about retirement that has been helpful for me and my husband: "Take a year off, don't commit to anything (yet). Instead give yourself a year(s) to discover what you 'want' to do." Retirement is a big adjustment for many of us. After being on a schedule for so many years, I could choose what I wanted to be involved with - and have the freetime to enjoy those activities! My transplant was in 2009, and with a new transplant, I did adhere to all post transplant guidelines for germ avoidance as recommended by my transplant team. I began volunteering with my regional organ donor affiliate group until they relocated out of my area. I also discovered Mayo Connect, and joined as a member because I wanted/needed to know how other transplant recipients were getting on with their lives. Another thing that I did was to dust off my violin and begin to play again. And I began to knit and sew again.

@krsunny1, As a double lung transplant, your experience is most welcome here on Connect. Lung transplants are not as common as liver or kidney transplants. As a member on Connect, you are welcome to join in to any of the discussions. Your experience is unique, and can be a means to support and encourage others who are struggling with their own journey toward a lung transplant.

Here is a discussion that I think you will enjoy!
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

What are some things that you would like to do now, that you couldn't do before your lung transplant?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 19, 2022

@krsunny1,
It has been a couple weeks since you have been here, so I am wondering how you are getting along. Are you feeling any better after connecting with other transplant recipients here?
You mentioned bothersome side effects of medications. All of us have experienced some side effects from our medications, and I know that myself and others would be willing to listen and to share our experiences that worked for us. What kind of side effects are bothering you?

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1 reply
krsunny1 | @krsunny1 | Apr 21, 2022
In reply to @rosemarya "@krsunny1, It has been a couple weeks since you have been here, so I am wondering..." + (show)
@rosemarya

@krsunny1,
It has been a couple weeks since you have been here, so I am wondering how you are getting along. Are you feeling any better after connecting with other transplant recipients here?
You mentioned bothersome side effects of medications. All of us have experienced some side effects from our medications, and I know that myself and others would be willing to listen and to share our experiences that worked for us. What kind of side effects are bothering you?

Jump to this post

Side effects that bother me the most effect my sleep patterns. I am wide awake at night, but sleepy in the daytime. I have been talking to a sleep specialist who thinks I have obstructive sleep apnea and central sleep disorder(?). Will do overnight sleep study at Mayo sleep lab in mid May to confirm.
Also, restarted individual therapy with psychiatrist. Feeling some better emotionally, but still a deep sense of loneliness. May have more to do with recent retirement, isolation due to COVID and distance from family than my lung transplant. I am connecting with transplant community in Georgia which helps. I will keep you updated on my progress.

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 21, 2022
In reply to @krsunny1 "Side effects that bother me the most effect my sleep patterns. I am wide awake at..." + (show)
@krsunny1

Side effects that bother me the most effect my sleep patterns. I am wide awake at night, but sleepy in the daytime. I have been talking to a sleep specialist who thinks I have obstructive sleep apnea and central sleep disorder(?). Will do overnight sleep study at Mayo sleep lab in mid May to confirm.
Also, restarted individual therapy with psychiatrist. Feeling some better emotionally, but still a deep sense of loneliness. May have more to do with recent retirement, isolation due to COVID and distance from family than my lung transplant. I am connecting with transplant community in Georgia which helps. I will keep you updated on my progress.

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@krsunny1, Oh, Please do keep in touch! Your response is so full of optimism and hope that I want to hear more - when you have more to add.
I hope that the sleep study will provide some answers and will lead to treatment. If you have any questions about a sleep study or want to connect with someone, I recommend that you check out the Sleep Health Discussion Group. Here is the link that will take you there.
https://connect.mayoclinic.org/group/sleep-health/

Will you be at the Jacksonville Mayo for the sleep study?

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1 reply
krsunny1 | @krsunny1 | Apr 22, 2022
In reply to @rosemarya "@krsunny1, Oh, Please do keep in touch! Your response is so full of optimism and hope..." + (show)
@rosemarya

@krsunny1, Oh, Please do keep in touch! Your response is so full of optimism and hope that I want to hear more - when you have more to add.
I hope that the sleep study will provide some answers and will lead to treatment. If you have any questions about a sleep study or want to connect with someone, I recommend that you check out the Sleep Health Discussion Group. Here is the link that will take you there.
https://connect.mayoclinic.org/group/sleep-health/

Will you be at the Jacksonville Mayo for the sleep study?

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Mayo in Rochester

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 23, 2022
In reply to @krsunny1 "Side effects that bother me the most effect my sleep patterns. I am wide awake at..." + (show)
@krsunny1

Side effects that bother me the most effect my sleep patterns. I am wide awake at night, but sleepy in the daytime. I have been talking to a sleep specialist who thinks I have obstructive sleep apnea and central sleep disorder(?). Will do overnight sleep study at Mayo sleep lab in mid May to confirm.
Also, restarted individual therapy with psychiatrist. Feeling some better emotionally, but still a deep sense of loneliness. May have more to do with recent retirement, isolation due to COVID and distance from family than my lung transplant. I am connecting with transplant community in Georgia which helps. I will keep you updated on my progress.

Jump to this post

@krsunny1, I want to introduce you to a member who just recently posted a concern about sleeplessness. @stolson1, who has a liver transplant and is beginning to experience a similar problem as you are - sleeplessness. I am also guessing that you have had your transplants for nearly the same length of time.
@stolson1, I have shared a link to the Sleep Health Discussion in a reply yesterday. You might be interested.
Has either of your sleep difficulty started suddenly? Or has it been gradual? Have your doctors ruled out medication side effects?

REPLY
2 replies
krsunny1 | @krsunny1 | Apr 25, 2022

One medicine that is known to increase sleepiness is called Clonidine. It is a patch that is sometimes used to reduce high blood pressure. I took it for 3-4 months and sleepiness was really bad. Doctor finally switched me to Metoprolol which has been effective in reducing my b.p. and not making me as sleepy. Also, I recently learned that I have a paralyzed diaphragm on one side which may reduce my blood oxygen levels, especially at night. Sleep study at Mayo (Rochester) is not until mid May.

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1 reply
krsunny1 | @krsunny1 | Apr 25, 2022
In reply to @rosemarya "@krsunny1, I want to introduce you to a member who just recently posted a concern about..." + (show)
@rosemarya

@krsunny1, I want to introduce you to a member who just recently posted a concern about sleeplessness. @stolson1, who has a liver transplant and is beginning to experience a similar problem as you are - sleeplessness. I am also guessing that you have had your transplants for nearly the same length of time.
@stolson1, I have shared a link to the Sleep Health Discussion in a reply yesterday. You might be interested.
Has either of your sleep difficulty started suddenly? Or has it been gradual? Have your doctors ruled out medication side effects?

Jump to this post

Prior to my transplant, I was diagnosed with Narcolepsy. Took medication called Provigil which was really helpful . Post-transplant, discontinued Provigil due to concerns about interactions with transplant drugs. Sleepiness got much worse after transplant.

REPLY
krsunny1 | @krsunny1 | Apr 25, 2022
In reply to @rosemarya "@krsunny1, I want to introduce you to a member who just recently posted a concern about..." + (show)
@rosemarya

@krsunny1, I want to introduce you to a member who just recently posted a concern about sleeplessness. @stolson1, who has a liver transplant and is beginning to experience a similar problem as you are - sleeplessness. I am also guessing that you have had your transplants for nearly the same length of time.
@stolson1, I have shared a link to the Sleep Health Discussion in a reply yesterday. You might be interested.
Has either of your sleep difficulty started suddenly? Or has it been gradual? Have your doctors ruled out medication side effects?

Jump to this post

Thanks for the link in the sleep health discussion.

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