Julie's Guestbook

Cathleen Weed  I saw this and wanted to let you know my experience. I was followed by my pediatric cardiologist (who had known me since age 6) all the way through my first 2 OHS (age 19 and 22). I was given a choice at Cedars Sinai of being on the adult cardiac ward or pediatric for the first surgery at 19 and I chose the adult unit. If she is just starting her cardiac journey she should be seen by a regular adult Cardiac Doctor at 17 because she will be followed by that doctor for years. I hated switching over at 23 because I loved my pediatric cardiologist. I actually called and talked to him on the phone just prior to my TAVR last year. The heart is basically full grown by age 16 to 18 so she can be seen as an adult patient. 💛

c l  OMG Cathleen, Thank you so much for this advice! I was so consumed with the current, and didnt think about her transition in the very near future.
I want to just follow one cardi b/c I'm already confused as the pediatric cardi want her to go on ACE but I dont want her to take meds if not necessary and especially since she does not have high blood pressure. However, both cardis recommend surgeons from CHOP, which has a pedi to adult cardiac unit. I havent met with any surgeons yet, but I'm also considering surgeons from NYC.

Cathleen Weed  You are doing the right thing for sure. It's good to get lots of advice and to not jump on the meds too quickly if possible. :) Lots of big decisions!!

c l  Cathleen, I'm so grateful for all of your advice. You are a true warrior (a very pretty one), and extremely kind and generous of you to share your story and experience to guide others!
I will be taking my daughter to a God sent cardi in NYC that sees patients 12+. He's more on the conservative side and does not agree with surgery yet if she's completely asymptomatic. He wants to monitor her and see what her second echo show, in 6 mos . She will have MRA chest xray and bloodwork done in the meantime.
As for myself, I have my annual echo check. So far so good. except my blood pressure sometimes shoots up (when i'm stressed), can take days for it to regulate, especially when my diastolic number is usually in the high 80's or 90's.
I'm told it's expected for the diastolic to be high with an artificial valve. Have you heard that? Otherwise, my best numbers are around 125/85 range on normal days.

I also get dizzy sometimes, which my ENT says is due to inner ear imbalance. I wonder if this surgery caused that? b/c I lost my voice for a month due to the intubation. It was terrible not having a voice.
I have a good cardi in my area, but i'm contemplating whether to switch to the same one my daughter will be seeing but I feel we should have one that's local as well. I'm not sure how to keep and juggle both.

Again, thanks for reaching out, and I will keep you posted.

Cathleen Weed  Hi :) You are so kind to say those nice things, thank you :). I'm happy to help! We are all in the same boat, we may as well row together!
I'm glad you found a great cardiologist for your daughter. The right care and plan mean everything. I like the sound of this one!
I experience the BP issues as well. I keep a digital cuff at home and check it periodically. I would keep an eye on it and if you need intervention (meds) take the smallest effective dose. High BP causes all sorts of problems down the road as you know :/. My advice too would be to stay VERY hydrated always. I like to drink electrolyte water (powerade zero) or alkaline water (Essentia). If the dizziness was associated with your BP it would be from low BP so it's most likely not that. However, it could be an arrhythmia. I'm sure you've mentioned to your cardiologist?
My follow-up care at this point consists of an annual visit to my local cardiologist here in Orange County, Ca and an annual visit to my surgeon's office at Cedars Sinai in Los Angeles (because they are following me closely due to the TAVR procedure). Other than that, I just go about life as usual. :) If you trust/like your local doctor that should be enough. Also, staying in touch with your surgeon and his team is never a bad idea. You can ask that all your follow-up results be sent to the office of your surgeon after each visit. They can keep an ongoing file on you and that way you don't have to try to gather information in case an emergency arises. :)

Julie McDonald-Lundgren  So sorry I didn't see this until now. I did not have a pediatric cardiologist as I was diagnosed at age 16. I had echocardiograms every year. That was really the only thing I did. I had a bicuspid aorta so circumstances were different.

Julie McDonald-Lundgren  I use a step to get on my horses, it's better for me and better for the horses. I have had a set back and haven't been riding again, yet. Glad to hear about others that have had valve replacement that like to ride!

Julie McDonald-Lundgren  It was 3 months. But now I have had a bit of a set back...I ended up going into the ER on Sunday with chest pains, I have pericarditis and they sent me home with medicines...however, it was not getting better - the other night I had server pain, hot/cold flashes, fever and more uncomfortableness. I had an appointment with my cardiologist on Wednesday and this is what I have found out - we need to make sure there is only inflammation and not fluid (because if there is fluid, it will need to be removed via needle) So I have an Echo Friday to check that...need to redo blood on Monday to make sure meds are working and reconnect with the cardiologist on Wednesday to go over it all...Please keep my in your thoughts and prayers as I figure this out.

I was feeling so great - walking and riding and now walking up my stairs causes extreme pain because I have to breathe deeply. I would just say really start out slow...I think because I was feeling so great I started back exercising too much too fast and now I have to work through this set back.

Julie McDonald-Lundgren  This choice is hard...it depends on your age and what type of life style you have. The only change I have really made being on comadin is no alcohol...but I didn't drink much before the surgery. also watch my greens (Kale, spinach, etc.) and take Tylenol instead of ibuprofen. I don't think it's that bad and I know I will not have to have another surgery...

Julie McDonald-Lundgren  Yes, one day at a time. I remember being so anxious myself and I am very happy to report that being on the other side is great. I feel good, just have to be careful to not over do it. My pain in manageable with Tylenol, so I am thankful for that. What did you think of Dr. Farivar? I really like him!

Julie McDonald-Lundgren  You are welcome! You will be able to do this too! Each day I am doing a little more. It's really hard to believe that only 9 days ago I had AVR. Rest and recovery is much easier than the anxiety I had before. Look for things to keep your mind busy and get as much as you can in order before the surgery.

Julie McDonald-Lundgren  Kristin Ott, I too was scared out of my mind before surgery and would have total melt downs. Breath and find something to focus on...a prayer or reading. Find something you like to do and enjoy every moment up until surgery. For me it was riding and showing horse. I did it up until the day before surgery. Connecting with others is also a great help. Hearing what they did, etc. It will be ok. :)

Julie McDonald-Lundgren  ABNW has been excellent!! I also think very highly of Dr. Farivar. My family loved him too because he came and sat with them after surgery and went over everything. Love him!

Bob M  I pray your surgery will be textbook and your recovery will be uneventful. Tomorrow will be a new day for you with a fixed heart. God bless and rise up!

Bob M  I pray your surgery will be textbook and your recovery will be uneventful. Monday will be a new day for you with a fixed heart. God bless and rise up!

Julie McDonald-Lundgren  Missing you too!!! Kiddos and I would love to see you! Thank you for your kind words and prayers. It's an exciting time for you (finishing school). Wishing you all the best, too!