It's just one of those days: Share your transplant recovery tips

@glover, Congratulations on your transplant. I was up and about soon after my transplant. What I learned from my experience is that (1) you have to listen to your body. when it wants to rest, let it rest. Your body actually needs a lot of rest post transplant to recover. (2) Take things slowly and don't overdo things or overextend yourself. (3) In time, things will slowly get back to some semblance of normal. (4) Be diligent in taking your meds and taking them on time. This will be crucial to help in warding off organ rejection. (5) Follow doctors' orders. If there is something you don't understand about their orders or your treatment plan, let them know. (6) Be quick to contact your transplant team about anything that bothers you, any questions you have, or anything that seems to be wrong. Even if it turns out to be nothing, err on the side of caution...let them tell you that it's nothing to be concerned about. (7) Be grateful every day for the gift of life which you have been given, and do all you can to keep it well and healthy.

@glover One last thing ... (8) Enjoy life! 😊

@glover, great discussion to gather experiences about recovery, transition to home and more. I expanded the title of your discussion and am tagging a few members who, in addition to @my44, will have more to add. Bringing in @rosemarya @gingerw @1942marilyn @2011panc @act @amynewheart @arqui02000 @athenalee @ashelbywilliams7 @azdan99 @betzymontero8 @cehunt57 @chickytina
@cmael @danab @dglass4040 @dshaver @footballmum @lsheerin @apachanga1 @8899 @marvajr @muddlycrew @grateful76 @jackiez @chuckg @jolinda @mdplastics @sec1205 @stephanierp @thegirls @sidney073 @scottij @jcwilliams ...

Repeating @glover's questions:
To help our caregivers and organ recipients (pre- and post-transplant),
- What experiences can you share about your recovery from returning home from the hospital and now?
- How did you transition from the initial recovery into the new normal?
- Do you have any pointers or suggestions to help our transplant family in the transition?

Congratulations and welcome to the new rest of your life. I am a Heart Transplant recipient and it was 7 years ago this coming January 5. You at about the place I was realizing that life is so much better than prior, but with a new set of rules. Now some 7 years I feel completely normal and it reminds me of what my life was like prior to heart problems. Except for trying to eat healthier, getting some exercise and taking my meds on time life can't be more normal.
Some things to watch in my case I love the outdoors. So I have had a mild case of skin cancer so a big hat and long sleeve clothes plus suntan lotion is a must. Being I'm in Arizona that long sleeve part is a bit tough in the summer but I've found uv type clothing that is real thin so I can stay as cool as possible. And without mention drinking plenty of water as with all that clothing on I sweat a bit more. But I still love playing golf and walking/ hiking so early morning is the trick. Those are some areas I can think of now. But please ask any questions, I love a good question.

Congratulations on your transplant. Enjoy your second chance at life.

I had a double lung transplant May 2022. So it is a bit different. I have been issues due to the meds causing other issues. I was watching my theroid prior to surgery (my mother had an issue with hers). Now I have to take meds for that (trick is to take them at 1AM, so that it isn't close to time that I am eating or taking Magnesium). One good thing is that I always had an issue with low blood pressure with a rapid heart rate. The meds that I am raise your blood pressure Now I have regular blood pressure and my heart rate has slowed down. You will go through times of having the meds adjusted. I went through the adjustment time for about the first 1 1/2 years. Put your med list in your phone medication list and then set the alerts. Due to having to space out the meds that I am on, I take meds 7 times a day. With having it on my phone, I just take it when the alert comes up and I don't have to watch the clock. It's also easier if I have to see a doctor that is not in the same network.

The best advice that I would have for you is to use the notes app on your phone. As you think of something that you want to ask the doctor, put it in your notes and then at your next appointment ask your questions. I always have more questions, but I won't remember everything if I don't write it down (until I am out in the car). I can always email my team with any questions also.

I also use the apps on my phone or watch for other things that are health related. It is a great time about having the transplants now, we have so much technology that can be used to help us live better lives.

Congratulations on your transplant! I had a heart double lung transplant in April 2021. On a whole, things have gone well. Me and my family have adjusted to the new lifestyle with just a few minor inconveniences. I also wear long sleeve uv shirts and hats when outside, along with sunscreen on my face and hands. I am very active and make sure to eat healthy, exercise and get adequate sleep. I always say -control what you can, because there are a lot of things you can’t control. I can control my adherence to med schedule and the other items I mentioned.

Getting back out in public is a rough one because you are immunosuppressed. This is an individual choice on how you can still live your life but also be cautious. My best advice-if people are sick, coughing, sneezing-stay away! Even if you have to excuse yourself from the situation.
Lastly. I am convinced that life is a series of setbacks and comebacks. Your recovery will not be linear. You will have (hopefully) minor setbacks and have to adjust meds, etc. Utilize this forum and your support network to help you through those times. You are not alone!

@glover Congratulations on your transplant and for the courage to reach out to the community. I had a heart transplant on 12/30/2019 after unsuccessful valve surgery on 4/17/19. My condition came upon literally three weeks before the valve surgery. Prior to that I was a biker, hiker, runner, lifter, cruncher, player and so on. So the death sentence was hard to take. After making the wait list and told I would probably have an eight month wait for a heart -- no living donors for the cardiac kids. Yet I only waited three days due to some unusual circumstances. I woke up in the ICU and wanted to slay dragons. When asked to rise and walk I queried how far they wanted me to go. When they suggested 2 times around the pod I said, "Let's do five!" After laying down all I could hear was my new heart pounding in my ears, and I did not want it to stop.

Today I am averaging 32,000 steps a day and have organized an Over 60 (years) and Under 6 (feet) basketball league. Covid actually made my recovery easier. It hit in February of 2020 and nobody could do anything for the next year which was just fine with me. I created a Top Ten list of attitudes and actions for recovery. Some of these are specific to hearts but perhaps 80% of this is relevant to all transplants

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, medications, technology, and capability 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. Be involved in packing your pills for the week, laying them out daily and 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 of 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 condition. All of that is gone. You have a new heart and it is your heart. Refer to it as such. It is not the donor’s heart. It is your heart. 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. 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.

Actions (Nothing happens until you do something.)
6. Hand sanitation. Keep your nails short and filed. If you were a biter, stop. Stash sanitizer everywhere and use it often. Keep your hands moisturized.
7. Monitor your vitals with extreme discipline. Weigh every morning and report weight variances of more than 3 lbs. per day. Take your blood pressure and temperature in the AM and PM. If you are exercising or walking, record those stats also. You do not know if you are winning unless you are keeping score.
8. Take care of your feet. Buy a callus remover and file off the dead skin. Trim your toenails. Moisturize your feet. You do not want dry cracked heels. Buy a good scrub brush and scrub your feet daily in the shower to keep them exfoliated and moist. Wear good sox and high-quality walking/running shoes. If your feet hurt, actions #9 and #10 will be compromised.
9. Move. Walk as much as you can and then maybe just a bit more so that you are ready to tackle Step 10 with passion and energy. Skip the elevator and take the stairs. Each step you take adds to your recovery.
10. Take advantage of what Cardiac Rehab can do for you. Your previous disease, surgeries, and medications – past and present - have ravaged the body. You now need to rebuild it and let your heart know that there is a new Sheriff in town.

Lastly, laugh. Humor is one of the greatest defense mechanisms we have against death. The common denominator of centenarians is that they laugh.

Good luck and don't be afraid to reach out.
Best always,
s!

I spent 6 months in the hospital on a bi-vad waiting for a heart. Then 2 weeks in the hoapital receiving ost transplant treatments. Being discharged was a surprise and brought great joy. The spent 2 weeks in a hotel close to the hospital. Physical activity was not easy for those 2 weeks and required an escourt (wife) when leaving the room. It was a great relief when I went home where I continued to increase my activity. I linmited my physical contact and wore a mask. Quickly mastered my drug regiment. I remained out of work for 2 years, collecting disability.

1. Congratulations to all transplant recipients and the caregivers/family members! You have a new lifestyle ahead of you.
2. Accept any assistance you need. Others may mean well, but when what they offer is not fitting what you need, gently tell them that.
3. Move! Don't lay abed, or figure you can relax. This is a new job, to recover from major surgery, and exercising mind and body is critical.
4. Whenever possible, have that caregiver or family member with you at each follow-up appointment, to take notes and hear what your transplant team is saying.
5. If you are a solid organ recipient, you might have had a restricted diet prior to surgery. Now is not the time to go wild with foods you couldn't have before! Yes, everything tastes good, but remember you are still in a recovery stage. Go easy and slowly reintroduce those forbidden foods in to your diet.
6. For caregivers and family members, be sure to take care of yourself, too! All this is a big change from here on out.
7. Be grateful for this second chance. There is always a chance of organ rejection, but tuck that into the far corner of your mind. You're responsible for as positive an outcome as possible. That comes from hard work to recover from all of this. Mind, body, spirit.
Ginger

Hi David,
I am a liver transplant recipient of 31 years this coming November. (Mayo Rochester) Because I had had chronic active hepatitis for 25 years before transplant, it took a number of years before I can say I was recovered. How you recover depends on many variables so be patient with yourself and try not to compare yourself with others. Congrats on your gift of life!