Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant. Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe. Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants. Liver, lung, heart and pancreas transplants were also represented.
What did these 32 patients have to say about life after transplantation? What do they wish they’d known earlier? From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists. Also, please share this free report with anyone who might find it useful.
The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society. For example, did you know that MS costs the US economy $28 billion each year? Or the average MS patient $69,000 per year? Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis. (Most are diagnosed in their 20s and 30s). Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.
As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients. In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system. What were their responses? Here is a word cloud illustrating 30+ answers submitted by our community.
Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years. Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you. (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)
In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful – but no one’s been cured.
“Daily injections will help” our doctors have reassured. Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed, Members always support those in need.
Here’s to everyone at PatientsLikeMe.
Getting a clearer picture of MS? Good – but there’s even more to come. Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”