It’s interesting hearing about other patient experiences, especially on a topic I haven’t really had to deal with yet. I had my one and so far only OHS for VSD & double-chambered right ventricle at 16 months, and my pediatric program hospital (CT Children’s) ended up forming an adult congenital program too, so I got to stay not only with the hospital but my doctor as well - twenty plus years of care builds a lot of trust! I know at some point I’ll have to change programs be it due to a move or otherwise, but hopefully not for a few more years yet.
Thank you Maria for sharing this story. You’ve been thru helAnd back.
But that’s the key: your back!
To answer Leighs question : I feel my adult care is stupendous !! I had Two open hearts at 6,7. The first didn’t , The second one worked.
Because cardiac care is now so advanced in every aspect - tools techniques procedures plans staffing pharmacy and so on- I don’t worry at all about whether I will need a third. If I do, then I do.
For me, it was changing from Childrens Hospital of Pittsburgh to the University of Heidelberg’s clinic in Germany.
What I found kind of cool is that my new cardiologist, the head of the clinic here in Heidelberg, knew one of my surgeons.
I’m thankful that I still have a relationship with my cardiologist, Dr Beerman, who I can still e-mail and ask questions as I settle into year 2 in Germany.
On the one hand, I’m grateful that care is “free” here, I paid no out of pocket fees for my cardiac MRI. I put “free” in quotations because, of course, nothing is ever really free, and it comes out of my pay check. But if I lose my job, I do not lose healthcare coverage.
Being in Germany really highlights how disgustingly expensive US healthcare is.
What I have had problems with is dealing with newfound anxiety around dental visits, which I did not anticipate.
My dentist in the states was a trusted family friend, who always gave me a prescription of antibiotics with no hassle.
Here in Germany, I had to fight for it - my cardiologist had to write a letter stating I needed to be pre medicated even for procedures where it is not usually recommended anymore (like tooth fillings).
For me it was changing from Children's Hospital in Cincinatti to the Cleveland Clinic in Cleveland during college. I was assigned a congenital value disease cardiologist who was about 10 years older than I. He was so engaging and interested in helping me navigate this new world that for me made it easy. He now has seen me through 2 additional open heart surgeries and the team at Cleveland Clinic is outstanding, I've been in this care team going on 30.years. It's daunting to consider a relocation, I don't plan to retire in NE Ohio, but will need to carefully consider options. I sort of feel "locked" in NE Ohio for my medical care...perhaps a small price to pay, but not my ideal life destination.
It’s interesting hearing about other patient experiences, especially on a topic I haven’t really had to deal with yet. I had my one and so far only OHS for VSD & double-chambered right ventricle at 16 months, and my pediatric program hospital (CT Children’s) ended up forming an adult congenital program too, so I got to stay not only with the hospital but my doctor as well - twenty plus years of care builds a lot of trust! I know at some point I’ll have to change programs be it due to a move or otherwise, but hopefully not for a few more years yet.
Thank you Maria for sharing this story. You’ve been thru helAnd back.
But that’s the key: your back!
To answer Leighs question : I feel my adult care is stupendous !! I had Two open hearts at 6,7. The first didn’t , The second one worked.
Because cardiac care is now so advanced in every aspect - tools techniques procedures plans staffing pharmacy and so on- I don’t worry at all about whether I will need a third. If I do, then I do.
But fingers crossed !
Woody Edelman
For me, it was changing from Childrens Hospital of Pittsburgh to the University of Heidelberg’s clinic in Germany.
What I found kind of cool is that my new cardiologist, the head of the clinic here in Heidelberg, knew one of my surgeons.
I’m thankful that I still have a relationship with my cardiologist, Dr Beerman, who I can still e-mail and ask questions as I settle into year 2 in Germany.
On the one hand, I’m grateful that care is “free” here, I paid no out of pocket fees for my cardiac MRI. I put “free” in quotations because, of course, nothing is ever really free, and it comes out of my pay check. But if I lose my job, I do not lose healthcare coverage.
Being in Germany really highlights how disgustingly expensive US healthcare is.
What I have had problems with is dealing with newfound anxiety around dental visits, which I did not anticipate.
My dentist in the states was a trusted family friend, who always gave me a prescription of antibiotics with no hassle.
Here in Germany, I had to fight for it - my cardiologist had to write a letter stating I needed to be pre medicated even for procedures where it is not usually recommended anymore (like tooth fillings).
For me it was changing from Children's Hospital in Cincinatti to the Cleveland Clinic in Cleveland during college. I was assigned a congenital value disease cardiologist who was about 10 years older than I. He was so engaging and interested in helping me navigate this new world that for me made it easy. He now has seen me through 2 additional open heart surgeries and the team at Cleveland Clinic is outstanding, I've been in this care team going on 30.years. It's daunting to consider a relocation, I don't plan to retire in NE Ohio, but will need to carefully consider options. I sort of feel "locked" in NE Ohio for my medical care...perhaps a small price to pay, but not my ideal life destination.