Crystal's Journal

susan harris  You can do this!  My must haves for hospital: a long 6-10 ft phone charging cable w outlet plug. a notebook and pen to write questions for doc. you think you’ll remember when you see them but you won’t!  good to write them when you think of them. You got this!

Wendy Hanavan  I had my surgery on Dec 2nd and brought one of those fuzzy blankets with a Christmas Snoopy design. It was the best thing I brought, not only did it provide me comfort, but it was a great conversation starter with all the people coming into my room!

Wendy Hanavan  And for recovery at home, if you do not have a recliner, I was able to rent one for a month from a medical supply company. I was unsure if I would need it but many on this site suggested it was helpful for them and they were right!

Patricia Miller  Crystal- first, I am so sorry you are facing all this.  Especially at 45.  I am also a nurse (recently retired) and it is definitely overwhelming.  You have come to a place of reassurance and lots of thoughtful guidance from the experience of others in this community.  When you are ready, take a listen to the applicable webinars and resources Adam has available on this site.  You will feel better once you know which heart center is best for you.   Try to get 3 opinions if possible.  
Regarding distance from home, my first sgy was done locally at a big center.   My second sgy, I had in Cleveland, OH which is 10.5 hrs away.  I flew home, but it was still several hours of travel.  It was manageable and all went smoothly.  I left the day I was discharged, but it was day 11.  Many people stay a couple days locally before traveling, but your surgeon and nurse navigator will help you make that decision.  
It's possible the heart center may want to do your heart cath if you don't have that scheduled yet.  My heart cath before my second surgery was done 4 days before the surgery date.  
Hang in there.  Deep breaths.  You will get through this.

Crystal Johnson  Thank you! I will look for the videos. I have an appointment with interventional cardiology this Wednesday. That was the first appointment scheduled by the cardiologist 

Pamela Gregory  I also traveled to Cleveland, OH. I flew home which went smoothly also. If you contact the airline in advance they will get a wheelchair and I believe they get you right through security too. Sounds like you would drive at 4.5 hours away. They will advise you how often to stop and walk around to prevent blood clots. I was in the hospital for 2 weeks because of some complications but usually it is 5 days to 1 week in. Stayed in Cleveland for about a week for a follow up appt to make sure everything was ok then flew home.

susan harris  we drove  2 hours home upon discharge. my son said the car seat was like a board. wished i had brought a foam cushion. know where a 24 hour pharmacy is near home. you may get home late (hospitals discharge at weird hours)  and need to fill pain meds. check in advance-at 10 pm, they couldn’t fill oxycontin til next day but they figured out how to give me a few to tide my son over. was very stressful for a few minutes. 

Crystal Johnson  Just wanted to add that dr Castro works with the vascular surgeon I used to work for. He is in Marin and I’ll be seeking a second opinion once my cardiac cath is cleared. I have already called to make sure my insurance is covered. They said I can get an appointment within a week of completing my heart cath. 

Fidel Martínez Ruiz  Hey Crystal. Although I'm abroad I can tell you that I had also a big dilation of left atrium and had mitral valve surgery with a biological valve implanted now and I'm fine. Left atrium dilatation is a sign of insufficiency, but the really important and grave is the left ventricle dilatation. Then, is important to have surgery before the last happens. But It's also very important to relax along the way and move on that direction. I wish you the best and 2026 be good and Happy for you.

Fidel Martínez Ruiz  Ah and keep in mind that often those of us who have worked in hospitals are the one who are most afraid, lol.

Rose Madura  You need to have a cardiologist that you get along with and trust.  It's good you are getting a second opinion.  Take time to gather up all your questions and write them down.  And take someone with you to the appointment in case you forget something that was said.  You'll have a second set of ears.  God bless you on this journey. Please keep us updated.

Richard Munson  My dilated left chamber returned to its pre mitral valve issue size after my surgery to repair the severe category prolapse valve. I stress repair as its very possible that it can be done rather than replace. Worth asking in my book. Its a business by the way so heart surgeons tend to push what they do best. Sorry to say, but true. 

Fidel Martínez Ruiz  LOL, Ja ja !, but emphasizing that a good replacement is better than a bad repair. There in USA I see you have quite a few surgeons who are experts in repair, which is a difficult surgery. We have not as many here. 

Crystal Johnson  Thank you all. Fidel you make an interesting point about this of us working there being the most afraid. They often say nurses are the worst patients. I am probably not helping that stereotype 

Richard Munson  Is that like a good friend is better than a bad woman? My repair was just good luck as i was not on this site till after surgery. Just so happened that my surgeon was a minimally invasive repair guy. The important thing is getting it fixed and not putting it off. 

J Alexander Lassally  Crystal - you don't need a cath to be evaluated for surgery. Start running things in parallel. Cardiologists don't decide if you need surgery per se - the surgeons will based on echo and TEE.
If you are in the Bay Area - you can do consults at Stanford, UCSF and Marin - and note that Davis has a new program too.. 
Things can move slow - so start the process ASAP! Good luck 

Richard Munson  Jal is right on as always. Probably cuz he once resided in mass. The cath is required before surgery to check for blockages. 

STEPHEN MORRIS  I agree with Richard saying surgeons push what they do best. I was initially told a mechanical valve was best for me. However,  I was still given a choice. I was leaning to natural valve because of my job (firefighter). Apparently,  it was all he was licensed to do, mechanical. My situation got worse and a new surgeon did my surgery and all he does is natural valves.

Crystal Johnson  So the doc I am looking at work at Marin general. My cousin works  there as I used to as well. I worked with a great vascular surgeon but she did procedures with cardio thoracic. Dr Castro has been recommended and my PCP has sent a referral. I live closer to Reno now so there where the cardiologist is. They have not even said I can see a surgeon yet

susan harris  do you need permission to see a surgeon on your insurance?  you can request your films (or surgeons offices are usually really good at requesting them) and see 3 or so surgeons now. look at the videos here in learning ctr. surgeons usually specialize so know who you are talking to-ross expert, mechanical valve, tissue valves, repair specialist, etc. it’s a matching process of what you want and what each surgeon does as specialty. it’s kind of putting puzzle pieces together!