General
Medical Experts on this forum
February 1, 2022
in General
How would you feel about having some experts onboard who could answer questions about science and medicine as well as practical issues w transplants? Not as people who would care for you as patients but as people who could advice without clinical analysis and discuss from a perspective of having seen lots of patients…
1 - 8 of 8 Replies
Sounds like a potentially good idea. It's always great to have access to a knowledgable source for insight to help understand topics on which I may not be well versed or to fully understand medical information that can help inform my decision making process. I think a lot of us, especially those >5+ years post-transplant are proactive about keeping abreast of topics that have an impact on our medical care so I would be curious as to what type of experts you have in mind? Preferably individuals that could answer questions more pointedly than answers we would typically get from a medical care team or by using Google. I'm personally interested in immunology professionals as well as professionals involved with or closely-associated with vaccine research more so than just general scientific/medical information.
I think it’s a great idea. I’m interested in hearing the different answers from multiple sources on this subject to include the various reactions we experience from the anti-rejection drugs we must take for the rest of our lives. The side effects from these drugs and how they affect our other organs.
Great idea. Many times I get confused on what I am being told by Doctors. It would be nice to hear another opinion
Transplant Patient
I would read it but I tend to be a one in a million case, and steer away from the norms. I had a call with my doctor last week when, after presenting him my theories, he said he’d never seen this in all his years of transplant work. Leave it to me to be the one teaching the doctors! I tend not to go towards general information and always prefer an individualized approach to medicine.
I think it's a good idea. One thing I'm interested in is research involving transplant patients that have made it through the 1, 5, 10 year survival timeframes. I think most of us are acquainted with research/lit regarding the potential pitfalls in the early years, but what about the later years?
For example, if you've never had an instance of rejection in 10 years, are the chances for rejection still equal to that first year? Are we still as susceptible? Or did we cross some sort of immune threshold, particularly if our immunosuppressant values have been stable for years as well.
Transplant Patient
@AliEm14 I think asking specifics is good but learning about norms elevates your general knowledge and makes you recognize signs and symptoms very early on
Transplant Patient
@Karin i definitely agree it increases general knowledge. It’s not my alley but I definitely see the value in it
something like this, regarding immune profile: https://onlinelibrary.wiley.com/doi/epdf/10.1111/acel.12750
"Major features of immunesenescence, including reduced thymic output, are ameliorated by high levels of physical activity in adulthood"
study goes on to show that that the immune profile of 125 older adults was similar to that of 55 young adults due to their physical activity, i.e. cycling. on the other hand, the older adults who are not physically active had compromised immune systems due to natural aging.
can this be extended to transplant patients? surely it can be measured as demonstrated above. yes i'm aware we actively take drugs that actively suppress our immune system but stuff like at this at the margins, maybe it helps.