General
Transplants in media
April 13, 2022
in General
Isn’t it odd how transplantation is rarely described well in media but the story is often about SAD SICK PERSON, hero SURGERY personal SACRIFICE and total RECOVERY
if this were truly the case of transplantation would we even need a community to lean on? And would there even be a shortage of organs since everyone should be an organ donor?
what can we do to change to narrative and force more money into this space and attract more science to work on better drugs and newer methods of addressing shortage?
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1 - 17 of 17 Replies
I wish people understood that transplant doesn't mean you are suddenly healthy! It is a life saver but I don't feel any better than I did honestly.
I also wish people understood immunosuppressants better!
Transplant Patient
@Kriste i am so sorry you don’t feel better / I clearly do think it is a major miracle although the side effects from my drugs bother me, and the sequelae from previous issues still remain…
I an super happy and grateful though to be here and to be better than before!!
I am immensely grateful, don't get me wrong, it's just frustrating that everyone thinks I should be back to normal 4.5 months out.
Transplant Patient
Totally @Kriste - this takes time! At least a year for the organ to settle and the mind to catch up…
I think about this all the time. I have a voice and a story to share yet I feel very ashamed and haven't said much about my current situation. It took me a very long time before I was comfortable sharing my diabetes story, but I'm not there yet. I want people to know the truth about the transplant process and one day I hope I can be a great advocate.
3 months into my transplant - I feel nowhere near normal - which, i guess, is normal. In many respects, I feel like a different person and somewhat disconnected from my life prior to the transplant - which is understandable because I am living a different life now. To answer the original question, I think there is a lot of research going on. I have had FSCS since birth and I think the identification of the specific defective gene causing it was only discovered not long ago.
12
Transplant Patient
Thanks for sharing! I feel like we are on similar time lines - I'll be 2 years this summer. I also ended up with EBV post transplant. I always felt like my normal scale would increase in incriments of 3, so I felt better at 3 months, then 6 months, 9 months, and so on. Your commitment to activity encourages me - I love being active but definitely prefer weights to cardio. I haven't ventured out to a pool yet, but hopefully soon! Your story reminds me that we can hold the good and the hard parts of our experiences, and not be defined by either one. Congratulations on your success, and all the best for your future
Transplant Patient
I agree with you, I often say the person I am now is completely different from who I was pre-transplant. I also was born with a genetic defect, for which transplantation was a relatively new treatment and there are only a handful of people with my genetic defect that have been transplanted thus far. Medicine is constantly evolving, and while we have far to go we've also come so far
I meant to write FSGS, not FSCS.
I wish I had a creative mind to find a way to get more people on board about being a donor. As we all know, there are not the number of donors needed. I think if we are open with the media about the possible bad things about transplantation, why would people feel the need to donate? Don’t get me wrong, I do think this is a wonderful support group to express our feelings. Some of the stuff I read may make a future recipient be very wary and nervous. I need to remember there are many people in our group that were so sick prior to transplant and the transplant was a blessing for better health for them. I believe a potential recipient needs to know possible side effects but sometimes too much info can make a person worry too much and affect the healing process. Facilities are doing research all the time on transplants as they are for cancer.
Transplant Patient
#transplantation is a #miracle. .
Those of us who are #lucky to have been #blessed with the ultimate ♻️ #giftoflife ✅️, must ALWAYS continue to share our unique stories/experiences and #TransplantJourney, in order to educate & raise awareness about #organdonation.
Next Wednesday, on the 20th, it'll be my 7th Heartiversary!! I'm completely blessed, extremely lucky and eternally grateful 🙏
💙 #donatelife 💚
Transplant Patient
@Saveddonna55 i think you are right - we should not go into too much detail about the negatives - it is truly the best thing that could have happened to us and we are forever grateful - but some portrayals are just wrong and we could help correct those issues (like you need to be a perfect match to donate)
Have any of you watched the show by Robin Robert's "Last Chance Transplant"?
No tell me more…. How can I find it?
On Discovery+. Good and Sad endings.
Transplant Patient
A lot of what I see in the media is portrayed in medical dramas. Unless I'm actively seeking out other content, like documentaries or things that specifically address transplant, the majority of it comes through subtle messaging, like a storyline on Grey's Anatomy. Transplant specific content is great, patient experiences are great, but also unless main stream media is addressed, how much does it really matter? It's why I'm so grateful for people like Willow Pill, who is on mainstream television and sharing her transplant story, or celebrities like Sarah Hyland and Selena Gomez who have talked about their lived transplant experiences while also being part of mainstream media. My thoughts are that it's not the dedicated transplant content that needs to change, it's how transplant shows up everywhere else