Thomas's Guestbook

Thomas Reid  Grace, so sorry I missed your message above. I've been on vacation in Scotland for 3 weeks and haven't checked this site or my secondary email until today. You may have already had your surgery!

My experience with Dr. El-Hamamsy and his staff was exceptional. 

My experience with Mt. Sinai was the opposite. The nurses didn't seem to know much about a Ross and the need to keep the BP 110 or below. I had to ask for BP medicines and when I got to the floor, I had to ask for it to be checked. I had my own portable BP cuff in the hospital and also my own additional medicine. I started taking this myself on the floor and asked to be discharged early so I wouldn't have to hide it. My room was right in front of the nursing station and was horribly noisy. I didn't sleep for 5 days and nights. I also lost 10 pounds since the food was horrible. I am doing great though!!! Been biking and hiking all over Scotland! Let me know if you have other questions. I'll check this more often. Tom

Grace Mason   Hi Thomas, I am so glad to hear how well you are doing!! 
I am actually having my surgery in a few days, on the 12th of September.
Thanks for the additional tips. I did bring my portable bp cuff with me since I want to be able to check it after discharge and until I receive clearance to fly back home. I will definitely ask Dr El-Hamamsy about how to best monitor BP afterwards. I brought some ear plugs with me so hoping to tamp down all the beeping alarms enough to sleep 🤞

Thomas Reid  I thought I was going to die about 36 hours after surgery. I didn't think my chest hurt that much. But I wasn't breathing deep at all. Incentive spirometer barely moving. My nurse assured me it would be better soon and it was.
The nurses had standing orders for BP control that they could do without calling anyone. But they always said they wanted to clear it with the doctors when they came by on rounds in 3 or 4 hours.
Say hi for me to Dr. El-Hamamsy and Roberto.I'm still in Scotland, but call tomorrow if you have any other concerns, 7609373767.

Grace Mason   That's what I am most worried about, the pain after...thanks so much, I may give you a call..I'll check the timezones first thou

Thomas Reid  No, I didn't think I was in pain. But I was avoiding it by not breathing or moving. I quit asking for pain med on the second day. But then asked again for sleep. I never took the narcotics after out of hospital. 
Also the floor nurse told me the naprosyn was for pain and I quit it 5 days after surgery only to find out just before I left NYC it was to decrease inflammation on the Dacron graft and I needed to take it for ?6 months.

Grace Mason   That's good to know. I did try and call you but my plan doesn't allow international calls I will bear in mind what you told me. I'm so glad to hear how well you are doing.

Thomas Reid  Let me know! You're welcome anytime except Christmas and New Year's when all my kids and some cousins come. I've got a 6 bedroom house less than mile from the winter mammoth lifts and ski back to house. A couple miles farther now. I'm not sure when I'm going to be able to ski again. But mammoth will be open until August this year!!!! And I'll probably shoot for a million feet of vertical again next year.
Thanks again for this amazing site. As I told you, I'd have a tissue valve now and a guarantee of 3 more surgeries in my life without it. After finding all the info on the Ross on your site and becoming my own advocate, I am in hopes that I will not need another heart surgery! I really can't thank you enough!!!

DeLois Tweedy  Thinking of you and sending up prayers for tomorrow's surgery, for you and your heart team. Blessings!

Thomas Reid  I'm 57, almost 58. The 2 main Ross surgeons in CA don't recommend Ross over 55. El-Hamamsy and Stelzer recommend Ross under 60. My father is 90 and active so family history plays into it. All Ross surgeons look to repair first, mine is not repairable. But if you want a Ross, you need to see someone who can finish the job/Ross. Where do you live?

Grace Mason   I live near Cincinnati. I have spoken with Dr Gerdisch in Indy and he feels strongly he can repair despite calcium on my bicuspid,  however he does not do Ross so in the event he couldn't repair it would be replaced with tissue valve. I've been debating talking with El Hamamsy for another opinion.

Thomas Reid  I think it is best if there is someone good there close to you who can repair. But, if it looks worse than they thought, also be able to do the Ross at the same time. I have to assume someone at Clevelend Clinic does them. I know there is someone listed on heartvalvesurgery.com at Northwestern, Dr. Chris Malaisrie. It's worth a telehealth visit with him. I am pretty excited about Dr. El-Hamamsy though. I wish surgery was next week!

Grace Mason   Thanks for sharing. Do you have any symptoms and know what size aneurysm you have? Mine was 5.1cm last time checked in December. I only have mild stenosis and moderate regurg, so I have few symptoms but not really anything physically limiting my activity so it's hard for me to really get excited about surgery
.
I'm glad to hear you are feeling good about yours upcoming and wish you all the best.
I think I will reach out to maybe both other Ross surgeons you mentioned. I have heard Roselli at Cleveland does not do Ross either but haven't talked with him directly yet.

Thomas Reid  Mine is 5.6 cm. People can rupture or dissect at 4 cm though. I was told not to do anything but walk. But I also have moderate stenosis.
Zero symptoms.

Richard Munson  Mine is 4.1 and my cardiologist said 5.0 was his fix it measurement, but it also depends on your size. Bigger person means less concern and smaller person the opposite.

Grace Mason   That was very fortunate you got checked recently!
I have been told to limit my BP to 150 or below. I also asked (one surgeon)how many people he has seen dissect under 5.5cm and he said none, but qualified with what Richard also said. It depends on other factors. I know I will be having surgery sooner rather than later.