BoredRedhead

My condolences OP. My only exposure to EB was as a NICU nurse when I helped care for a newborn who had the most severe form. Sadly, hers was not survivable and even pain management was an overwhelming medical challenge. That was almost 30 years ago and hers is a case that still haunts me. I can’t imagine what it’s like to live with it; thank you for sharing your stories!

Ex-pediatric heart transplant coordinator here. (My job was to take care of kids before and after getting a new heart) We always explained to families that a heart transplant isn’t a “cure”; what we’re doing is converting a terminal illness into a chronic illness. TV would have you believe that you get a new organ and you’re fine, but the reality is that it goes along with a lifetime of medication and follow up. That still beats dying of heart failure but it does take work. That said, we had plenty of kids go FAR beyond the ten-year quoted organ survival before they needed a new heart, and those expectancies have climbed as the data, meds and science have improved. Unfortunately in the US insurance is still a huge issue, especially as kids age out of their parents’ policies. Not to be too political, but no kid should die just because they can’t get a job straight out of school with excellent insurance AND a high enough salary to afford copays. We’ve got to fix that system.

• Joffrey

The active ingredients are the same but the fillers may not be. My specialty is different (organ transplant), but I’ve had patients who could absolutely not take one version of an immunosuppressant but did perfectly well on a different one (branded vs. generic). So it’s possible that you’ll have a different result, but equally possible that the active ingredient is the source of the issues in which case you’d probably have the same side effects. Best of luck!

The shit they added on before I bought the car is the worst. Zak-tek paint protector?!? No thanks. “But it’s already been applied!” Then I’m getting it for free and that was a bad spec on your part. It’s a big city. There are lots of dealerships, this is a very popular model, and I’m sure they don’t ALL have Zak-tek. Either sell it to me for the price I agreed to pay or stop wasting my time.
Also, never, NEVER buy a car based on the monthly payment amount. Do the math first—there are plenty of online calculators. Know what you can afford then don’t buy a car that costs more than that, even if they can “lower your payment” usually by extending the loan term, which means you pay a TON more in interest (they love this) AND your car is worth a LOT less when it’s finally paid off.