Living Life after your Transplant

Hi Colleen - you link on the first post is broken. (Top transplant hacks)

Thanks, Andy. I fixed the link in the previous post. Here it is here too:
- Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

What’s your top tip?

@colleenyoung, @rosemarya I read through the existing hacks and they are all good. For myself I made a top ten list of actions and attitudes while in the hospital and still live by them. Since the actions are, for the most part, repeated in the existing hacks with the exception of foot care and tracking vitals and exercise results, I will only share my suggested attitudes below.

Attitudes (Attitude ultimately determines your altitude.)
1. Ownership. You and you alone are responsible for your recovery. You must be an active participant in your care and not a passive subject. The doctors, nurses, family, friends, medications, and technology are resources available to you. Ask questions so that you understand what is happening, why it is happening, what your responsibility is; and so on. Lead the packing your pills for the week, laying them out, reciting what you are taking using the formal and informal names, how much, and why. Take charge!
2. Trust. Trust those around you particularly your caregiver and medical team but do not abdicate your responsibility for your recovery. See #1. Be confident in their competence. Communicate your physical and emotional state regularly so that those who are there to assist you can bring their expertise. You do not want them guessing at your condition. Blood tests and X-rays are only part of the equation. Ask your team “why” often. It will fuel your confidence in the prescribed course of action. When you have a “why” you can handle any “what”.
3. Gratitude. Express gratitude to everyone. You cannot return the gift to your donor, but you can pay it forward. You are here to help others. While you are responsible for your care, you must not become self-centered. Get outside of yourself and focus a little energy on others.
4. Choice. No matter how you feel today, how poorly you slept the night before, each day is a good day. Some days are just better than others. You no longer have your previous heart (or other organ) condition. All of that is gone. You have a new heart and it is yours. Refer to it as such. I like to say, “It was not my heart, but it is now, and I am giving it the best home I can.”
5. No whining. Emotion is a very real issue but there is a huge difference between crying about a lack of progress and doing something about a lack of progress. Some people value the group sessions to get “it” off their chest. Others find time with the Cardiac Team Psychiatrist valuable as you learn more about yourself. Other may find solace in their spiritual community. In any case, this is an emotional roller coaster. Do not avoid it. Ride it so that you understand what and why you are feeling the way you do. In the end, realize that however you are feeling, you can choose to feel and act differently.

With respect to continued recovery and Covid, I feel we are definitely not out of the woods and so while She-Who-Must-Be-Obeyed and I are venturing out (recent trips to Sedona and San Diego, planning for a wedding on Lake Superior in the fall followed by a trip to Maui with our best friends) we do so with extreme discipline on masking, distance, restaurants, and so on. I sense frustration from neighbors who see me in a mask if we are going to be talking together in a closed room but their discomfort or judgement is not my problem. Staying healthy is my problem/opportunity. And I freely admit to using the transplant as an excuse to not see people I really do not want to see. "Well I would but my team at Mayo says I can't." (Love laying the blame on Mayo! Almost as good as blaming my parents or society.)

I do wish the posted signs in public areas would acknowledge that you might be wearing a mask because of immune suppression. Right now wearing a mask in public seems to indicate that you are not vaccinated. I actually suspect the unvaccinated are not wearing masks either. So my Anthony Fauci mask or my little heart in the corner mask are always available.

Best always,
s!
Scott Jensen

I'm 2 years post Liver/Kidney transplant. I just had an excellent check-up ( I'm 70 ) and have been fortunate that I've had very few problems. I have grown tired of the Covid lockdown and was one of the first to get the Moderna shots. The MAYO advised against an antibody test, however I had one done by my local Dr. via LabCorp. I did not have antibodies, so after watching the Johns Hopkins transplant video, I took a third Moderna shot. I now have antibodies and after my 4th shot next week, I will ask the Dr. to run a test with specific numbers. I'm looking forwards to the next Johns Hopkins update - as I want to be as protected as possible.

For me not much has really changed. The main thing I miss is Church and my church is in the process of remodeling the Audio Video booth to enclose it and that way I can run it protected. For the past year I've been doing it from home but our new Pastor wants me to teach Adult Sunday School (which I have wanted for a while now) so I'll get back into the Church protected that way. Most other activities for me are out doors anyway. Hiking, Walking, Golf so for the few times im inside like shopping, Post office, gym, Mayo clinic I do what I've done ever since transplant. Mask, sanitize, and no touch greeting. First bump. Elbow etc.
My faith has always made me not fear Death since I know as the Apostle Paul says in Philippians 1:21 For me to live is Christ, and to die is gain.
This means I have faced death many times and I feel im here because God has work for me to do. My future Home is Heaven and im only a pilgrim here compared to eternity.
But also that brings responsibility to protect God's Vessel so I do all I can to accomplish that.
Advice for others is we got this new chapter in our lives and it wasn't to be a hermit. Just be smart and enjoy life.
Some.other tips ,that we have always done, monitor our vitals, Report new or any changes, don't assume ask questions. Based on what ive learned from Infectious Disease is early treatment is key. There is no way to ensure thru any vaccine that we take completely protected us. But the success rate of treating covid has improved also over the past year.
Have a Blessed Day
Dana

I’ve enjoyed reading the responses to your query, Rosemary, thank you for posting it. I was only diagnosed with PBC/stage 3 liver cirrhosis for a couple months when I nearly bled to death twice due to bursting varices and spent almost a month in ICU from upper GI bleeds. That’s when it hit me my life was definitely changed, and, I was alive!

Three months later came Covid and lockdown. It was a challenge not being able to see doctors as I continued to get sick. I owe much to a couple friends who I could trust to keep me free from Covid and help me around the house and alternate caring for me. When I got on the transplant list I did my first interviews virtually, but I made it through, and met my transplant team in person just about a week before my transplant on August 20.

Because of a terrible reaction to prednisone and being on a feeding tube because I wasn’t gaining weight, I was in the hospital for a almost a month and a half. It was, needless to say, not enjoyable and it was lonely because Covid made it difficult for visitor. But, again, I was alive!

I’m used to being masked and careful, but living in Vermont is a blessing. So, I remain masked indoors, don’t partake of inside restaurant seating, etc. but, I do go maskless for the most part outdoors. And, wow is it awesome! Outdoor events galore! I’ve always been a tremendously social person, so being masked inas. been challenging, but I understand the importance. Not shaking hands is another thing which will take getting used to in my professional life as I move away more from remote work.

I have similar “attitudes” as @scottj. I’ve done mountains of medical research on transplant recovery and new illnesses I have; eat well and exercise; and, take my meds and do what my transplant team tells me to do. I strive to be grateful and definitely more appreciative of my friends, my transplant team, organ donors, and others; I’m definitely more emotional, and cry more often…I was never a cryer, but others on our virtual support meetings say it’s a thing; and, I try to remain positive even though I’m very tired of being ill and had hoped after my transplant I would be back to my usual healthy self.

Be as well as possible and always persevere! 😷

Post-Covid times…. I have a third Pfizer-BioNTech vaccine on board, waiting another 3 weeks to do anti-body test.
Old friends came to visit, they had both caught a dreaded COLD once vaccinated by relaxing their anti-virus precautions! They were ‘through it, feeling great.” We went to dinner in an outdoor venue with partitions between sets of diners. I was so happy to be out at a great restaurant! AND I was quite freaked about the folks who ignored the restaurant’s stated “Masks unless eating” unenforced rule. I was the lone masker!
Tip from long before I had my first kidney transplant 33 years ago? One from my nephrologist (a transplant recipient): ‘Live your life as if you are going to live to be 100. Be active, make plans for the future, eat well, believe with all your heart that you will be 100 and your chance of being very very old when you die go up thousands of percentage points. If you do not, I will see you next, very soon, while you are having dialysis.” 13 years after our annual in person visit, he said “It is time, I want you to have a pre-emptive transplant [before dialysis]. Let’s find you a donor.” 1987. My partner of one year donated her kidney - a “general population match”. So, I continue living by that advice, my wife and I have had wonderful adventure filled lives, I’ve worked for the NKF, the DOD, the VA, private practice (psychotherapist) and raised our son’s and now are enjoying our grandchildren. I practice Gratitude every day (write down three new things for which you are grateful). I am 70! Who knew?
Tip: PLAN YOUR DISTANT FUTURE. Eat organically as much as possible. Take your meds. Plan a deep future for yourself - see that happening. Drink only filtered water (take out cryptosporidium, metals and chlorine etc.) (filter your water at home, fill bottles). Take your meds even if the side effects bother you. Love love love others, do stuff for others. Wash your hands ten thousand times a day. Take your meds they will give you a future. Practice gratitude - every day.
Post-Covid tips: see above. Wear masks on long outdoor walks if the trails are crowded. Wear a mask indoors. Be outdoors. Re-connect with people, this will give you a will to live - especially if you can do stuff or help others in some way. PLAN AN EVEN MORE DISTANT FUTURE. Practice gratitude and realize that each gratitude you state is a prayer for your future!

Thanks for sharing. Amit Sood at Mayo counsels the 3 gratitudes. It's a good philosophy for transplant families. Here's his latest advice on living with stress during times of High Anxiety. https://connect.mayoclinic.org/blog/charter-house/newsfeed-post/self-care-building-immunity/

@silverwoman, If you feel someone walking at a safe distance beside you, It is me! Yes, I'm the one wearing the mask in this mostly unmasked population.

I am happy to see that you are ready to get into counted cross stitching again. I am eager to begin my monthly prayer Shawl Ministry Monthly meeting/work sessions. We meet in a huge room with plenty of space to spread apart! I even have a friend who will take over if/when I feel uncomfortable. There is something special about the feel of the thread or yarn that we use to create a thing of beauty - a work of art!

Here is a discussion that I want you to see, and to view, and to enjoy and even join because it is all about Art and what other are doing at all levels.
Grab a comfy chair, and prepare to be inspired!
Just Want to Talk > Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
Cats, dogs, birds, fish, hamsters are the topic for this discussion about how animals comforted you, helped with recovery or promoted good health for you. Enjoy! And We will be on the lookout for hearing about your kitty (maybe even a picture)
Just Want to Talk > What Pets Can Do: Health and Healing
https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
I believe that we can enjoy a new-normal if we stick together and encourage each other. Keep in touch!

Hi, @andyp, and Good Morning.
I am wondering whether you were able to view the Top Transplant Hacks since Colleen has corrected the link.

I like the easy read list format. Even with my 12 years post transplant living, the easy-read list makes it easy for me to do an at-a-glance reminder that I am doing the right things to protect myself and my transplant. I don't ever want to become lazy about that!
What did you learn when you looked at the list?