I can barely breathe. Second OHS.

[bright&shiny]

Sending you gentle hugs and bucketloads of healing vibes. Keeping good thoughts for you

@missy , you are so kind. Thank you!

 

[bright&shiny]

Update: I had my first second opinion at another hospital. They were very kind, the surgeon was very nice. They have the same opinion as the first surgeon (that open heart surgery is required), but don’t feel the need for the CT scan. Which is a plus. It’s a very nice place and seems more humane in many ways.

Our concerns were his level of experience compared to the first surgeon at Mass General and the one who is currently reviewing my case at Cleveland Clinic. He also thinks it safe to open me up first, and use the ascending aorta for bypass. The first surgeon thinks that has an unacceptably high mortality rate…. That’s a big one to consider.

Even though I expected similar recommendations, it was still quite hard to hear and I’m back on my heals again a bit today.

In the meantime, Mass General has scheduled the CT - with anesthesia- and I’m working hard to get the details so I can manage my anxiety better. I was in tears with them today. So frustrating to be told “we don’t do this” or “that’s not our area”. I finally said it’s not fair to expect me to just show up without knowing the plan. She actually agreed with me and is now trying to get information. I’m exhausted.

On a very (the best, really) positive note, my husband and I were invited to have lunch with the kindest and most generous PSr - the legendary @Mrs_B and her wonderful husband before the appointment. I can’t tell you how kind she is, generous with her time and expertise, and lovably charming! We had a great time, and it certainly helped me relax a bit before the appointment. And boy, can she cook! Our lunch was delicious, the setting fantastic, and meeting new friends - priceless. I am so glad I took her up on her generous offer to reach out! A consummate professional - and kind, understanding and experienced. What a combo. And, I may have also seen some AMAZING bling (my beloved and the southern cross locket). What a wonderful way to build community! I’m blessed to have met them and hope it’s only one of many visits to come!

 

[mrs-b]

@bright&shiny -

I'm so sorry I wasn't around yesterday - my Crohn's is having a hissy fit and being a royal pain!

I Just wanted to say what a pleasure it was to meet you and your husband. We had a wonderful time getting to know you both a little, and your backbone and true grit as you navigate this incredibly rocky path are nothing short of inspirational.

Thank you for making the deviation in your busy schedule to get to this neck of the woods - you are always, always welcome!

PS. We finished the rose last night!

 

[bright&shiny]

@bright&shiny -

I'm so sorry I wasn't around yesterday - my Crohn's is having a hissy fit and being a royal pain!

I Just wanted to say what a pleasure it was to meet you and your husband. We had a wonderful time getting to know you both a little, and your backbone and true grit as you navigate this incredibly rocky path are nothing short of inspirational.

Thank you for making the deviation in your busy schedule to get to this neck of the woods - you are always, always welcome!

PS. We finished the rose last night!

I'm sorry the Chrone's is flaring! You definitely deserve your gut to treat you better (hugs).

Joe was still talking about our visit last night - I think it helped both of us . You are too kind - that's giving me way too much credit, but I appreciate the sentiment. Again, thank you. And that lunch - so delicious!

BTW: Dr. Cameron contacted me by email last night and asked if it would be ok to not have the CT. LOL I said YES - and then I finally slept! I've sent a note thru the portal to ask if this is final and who cancels that dreaded test....we'll see how long it takes to get an answer.