Feeling depressed 2 years after successful transplant
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.
@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
@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?
@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?
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.
@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?
Mayo in Rochester
@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?
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.
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.
Thanks for the link in the sleep health discussion.