Changes after Transplant

Yes, I also have a pig valve helping my heart to pump so that's an interesting conversation!

@wildcat as @2011panc commented, often little is known, it’s up to the donor family and recipient, how much they wish to divulge. I wrote a letter of gratitude to my donor’s family and they responded, almost a year later, and told me quite a bit including her name, and signed their names. Like your donor, my donor was a very caring young woman, and very healthy. Her death was due
to bad management at the hospital ER so her widower has been very vocal and is trying to get legislation passed to guarantee this will never happen again. Of course when I saw an article in the paper I immediately recognized her name.
I think my case is highly unusual though.

Speaking of labs too, mine just moved from every month to every other month. I am almost three years post transplant. I have them drawn locally and then they are brought by courier, “stat”, to their lab in MA which gets the results right to Mass General. It’s great because I have them available that afternoon, usually by 2:00!
JK

Just wanted to let you know that this week's Mayo Clinic Connect member spotlight highlights a member who has been active in this discussion on changes after transplant. Get to know more about @2011panc, her Connect experiences and what she enjoys on and offline.

Finding open, honest conversations with others: Meet @2011panc https://connect.mayoclinic.org/page/about-connect/newsfeed-post/finding-open-honest-conversations-with-others-meet-2011panc

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

Good Morning and Welcome!
Have you considered this Change? - Here is a post from Mayo Transplant Facebook that I saw this morning:

"Even if you haven't reached advanced age yet, sometimes with the transplant medications or side effects of organ failure or chemotherapy, patients can have reduced reaction times making things like driving less safe. Have an open and honest conversation with your doctors about your ability to drive and listen to those around you. Your independence is important, but so is your safety and the safety of others."
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-the-road-to-safe-driving-for-older-americans
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I have recently taken the opportunity to revisit the posts in this discussion. I want to invite anyone, old(?)members, new members, friends and family to join into this conversation.

I also want to tag the following experts to share any updates.
@2011panc, @danab, @luckonetj, @twocatmama, @ca426, @kellysmith1215, @donnan, @gaylea1, @garyandrade, @bexhall, @linmarie, @metallicpea, @linmarie, @wkary.

How are you doing? Have your changes become a normal part of your life? What would you say to a new transplant patient about how to live with changes?How do you manage any new changes?

New transplantees, You are among friends, and I invite you to join in with changes, questions, comments. We were all new once and want to support you.

Thanks, @rosemarya This is actually very timely for me, if we ever manage to get our acts together and sell our home to downsize. I am very conscious of not being further away from Boston since that is where I have the majority of my medical care, except for my PCP, but I hadn't thought much about convenience to other things if I had to stop driving. That's tricky in the area where I live. There is very little public transportation. I abhor being dependent on anyone so I would really like to be close to shopping, etc. to not have to rely on anyone other than myself and my husband.
Thanks for posting.
JK

Hi @rosemarya well im coming up on year 2 in Jan 2020. I am so blessed that the Lord has given me this new Heart and even with challenges due to viruses i am very happy with my life. I have had a challenging 6 months with my blood count issues but with the great staff of Doctors i believe we may have a good plan in place. My dreams to achieve an ability to do more hiking and camping is probably the area i most miss. Just when i think my workout plan is getting results i have to take a break due to low platelets, wbc, hemoglobin etc. Then the challenges of getting the insurance company to agree with the doctors can be stressful at times. But with prayer and some pleading we now have the ability to get the treatment on a regular basis that seems to help my blood counts that is IVIG on a monthly cycle. Just this week my platelets came up from 22 at the beginning of oct to 44 this past Tuesday. And my wbc is now back in the normal range. Hemoglobin went from 8.8 to 10.0 also. So the doctors let me start working out again. Easy at first but it felt good to get back in the gym for a 10 min workout plus about a mile walking. Which when my counts are low they don't want me doing any strength training just some short walks. I was getting a little tired of being stuck at home. Other than the blood counts tho the Heart is doing great and overall i feel good.

@danab are the platelet problems and blood counts typical after heart transplants? We knew a woman who had a heart transplant when she was around 20. She is now well into her 50s, has two children and is thriving. I hope that you will soon be doing as well too.

I too have been away from my gym due to a fracture so I can sympathize with how you are feeling. At this point I have been back three times in the last week, so that’s a start.
JK

Hi, @ danab, I to am a heart transplant patient and I am at 8 years and 9 moths post transplant and I to have problems with my hemoglobin and platelets right now my hemoglobin is stable but white white count is a little high right now but my red cell are finally back to the low normal range for me as I am battling an infection right now but my transplant team has had me on Vitron C to help keep my hemoglobin and red and white cells up where they are supposed to be I lost count of how many blood transfusions I have had because of getting sick and accidents and I still have a low blood count have dealt with low blood count since before my transplant i have been on the iron supplement. So I truly understand what you are going thru I to work out and walk when I'm feeling well enough to I work out at the YMCA here at home and walk also I'm not allowed to do any of the strength training machines for the upper body mainly do to having some injuries last year and am not strong enough for that yet but I do use the treadmill when I cannot get out in the community to walk and the Nustep, leg press and hip abduction machines my doctor's have cleared me for those am working in getting back up to my walking of 20 thousand to 30 thousand of steps a day but that's only if my body will let me as for my heart with everything I have been thru in the last y are and s half my heart is doing great and as of July my platelets and hemoglobin and red blood cells have stayed stable so I believe that eventually you can have the same results at least that's what I pray and hope for you is. Sorry this was so long
Glinda

@danab, do you mind d if I ask what day in January of 2018 you had your transplant as I said before I am going on 9 years on the 20thof January

January of 2011 I got my hear luckily just 2 days before my mother and two kids would have been planning my funeral so I was extremely lucky I had waited from 2005 to 2011 for my new heart am so glad your heart is doing great and so is me mine it even survived