Stay Tuned for post ROSS Procedure update

[sarashreen]

Stay Tuned for post ROSS Procedure update

 

[pellicle]

Stay Tuned for post ROSS Procedure update

I'm more keen to hear the post 12 year update ... but glad you're doing well

 

[Lucker]

Congratulations, eagerly waiting.

 

[sarashreen]

History:- s/p VSD closure and AV repair in July 1992 at the age of 6.
Following-up with cardiologist, echo last 30 years.
Dec 2021 and June 2022 echo shown ejection fraction went down to 45%. LV dimensions enlarged so cardiologist referred to see surgeon.
Sep 13 2022 :- had appointment with Dr Desai at Penn Medicine. He talked about ROSS. Ordered MRI heart and CT chest angio tests
Oct 26 2022 :- MRI & CT done
Nov 3 2022:- Dr Desai looked at test results and he told he can’t perform ROSS due to earlier VSD closure .
Dec 2 2022:- appointment with Dr Ismail El-Hamamsy at Mount Sinai,NYC. I mailed the reports, cds earlier before appointment. He looked at test reports and he confirmed I am suitable ROSS candidate.
Here nightmare started about early ROSS failures/studies. Figured out my aortic root size is 26 mm , valve is tricuspid, STJ & other dimensions are good for ROSS. Had another appointment with Dr Hamamsy on Jan 16 2023. Got Clarified all doubts and questions about being suboptimal candidate for ROSS. He again confirmed that I am perfect candidate for ROSS. So finalized ROSS as primary and Mechanical as alternative if ROSS is not doable in OR.

Confirmed with Cleveland clinic surgeons Dr Roselli and Dr Unai. They confirmed as well I am perfect candidate for ROSS. Dr Svennson referred me to Dr Roselli since he doesn’t do ROSS.

Dr Unai called me directly and talked to me for 30 minutes. He recommended both ozaki and ROSS. He is very comfortable doing ROSS witn Dr Hamamsy.

Previously Surgery scheduled on Feb 15 2023. Got severe cough on Feb 8 2023. Got tested positive for covid. Surgery postponed to Mar 29 2023.

Dr Hamamsy advised me to admit two days earlier to facilitate my state for surgery (diuretics, etc ).

Mar 27 :- got admitted. Inserted needle on left hand for medications. fixed heart rate wires and device.

Mar 28:- Medications (diuretics, blood clot’s prevention) continued. Cleaned the body with special soap at 9 pm.

Mar 29:- BIG DAY HAS COME.
12 AM stopped eating, drinking.
5 AM cleaned the body.
9:30 AM:- Taken into OR
As per notes they given anesthesia at 11:08 AM. But I went to sedation in OR after 10 minutes.
5:40 PM:- Surgery done. Dr Hamamsy called my husband and updated about surgery. ROSS done , Tricuspid regurgitation fixed, Closure of a membranous septum aneurysm using a patch of autologous pericardium. This membranous septum aneurysm was found in OR after opening up. Looks like it’s sequel from VSD done in 1992. Surgeon decided to close this aneurysm of the membranous septum with an autologous patch of pericardium to avoid any turbulence or early failure of the pulmonary autograft.
7PM :- my husband told they moved me to CARDIA ICU
8:30 PM:- My husband told he visited me at ICU. Ventilator, pacemaker wires, urinary catheters, chest tubes are in place.
9:15 PM:- I woke up in ICU. Nurse told surgery is done. I couldn’t believe. I asked again & he said yes its done and its ROSS. He asked me move my hand fingers and legs.

3/30:-
1 AM ventilator tubes removed.
Morning they kept me in chair. Asked me to walk. Walked few steps, got nausea and dizziness. Couldn’t walk.
12 PM moved to stepdown unit from ICU.Chest tubes, pacemaker wire, oxygen tubes(5L), heart rate monitor are in place. Evening Dr Hamamsy Visited and asked me to walk tomorrow . He told if you lie down like this yoh will get more complications (pneumonia, etc). able to eat fruits and drink juice, water.

3/31:- Urinary catheter removed. Walked 1 round. Could do Spirometer only 250.felt very tired, dizziness and nausea. This day had extreme pain in rib. Couldn’t breathe due to this pain. Pain score I said 10/10. Finally assistant surgeon found out chest tube is touching the rib causing the pain. He gave numb medicine (Bupivacaine) through chest tube which eased the pain. Oxycodon stopped since it made me drowsy. They started new pain medication. Couldn’t eat anything due to nausea. Had only fruits and juices.

4/1:- Walked 3 rounds. Ate breakfast. Had lunch & dinner. Spirometer reached 500

4/2:- Right chest tube removed.Walked 5 rounds.

4/3:- Walked 10 rounds(3 times) . Climbed 3 steps. Morning diuretics dosage increased to 40 mg due to swelling on legs. Evening 20 mg.

Pacemaker worries
Resident doctor from Electrophysiology (HeartRhythm) team visited me. She told 80% pacemaker not needed. She told We are watching for heart rhythm and will give advise for discharge in 24 hrs. Evening Dr from her team visited & told I am clear for discharge. She will be sent with holter monitor(zio) to home. 2 weeks monitoring needed. I had junctional rhythm not sinus.

Evening Dr Hamamsy visited and I expressed my worries about pacemaker. He told I will go home on Wednesday & I wont need pacemaker. I asked what to do if emergency at home. He told I m sure I wont need to go for emergency. He strongly advised to walk and be more active.

4/4:- Couldn’t sleep after 2 am. Sitting on recliner since 6 AM until 1 PM. Walked 10 rounds(3 times). Climbed 3 steps(2 times). Temp. Pacemaker wire removed at 3:30 PM. Left chest tubes removed at 4:30 PM. felt better. slept well this night

4/5:- Going home .
Had shower with the help of nurse. Holter monitor inserted. Discharge instructions given. Got discharged at 11:45 am.
Reached home at 3:15 PM. Felt very warm after reaching home. Amazing feeling.

Feel free to send private message or ask any questions here, I would be glad to answer.

Will post about recovery at home in next threads.

Thanks a lot to @tommyboy14 for lot of valuable suggestions and advises.

 

[Seaton]

Fantastic news! And great write-up. Thanks for the excellent update.
Wishing you a good and steady recovery and a long and healthy future.

 

[pellicle]

Will post about recovery at home in next threads.

welcome to the other side

 

[Lisa2]

Thanks for sharing your experience with us. Best wishes for a speedy recovery. I hope it’s all smooth sailing from here.

 

[Chuck C]

Welcome to the other side!

Thanks for the detailed update! This kind of info is always helpful to others.

 

[tommyboy14]

Thanks a lot for the Shout out and very glad to hear your recovery went well.

I wouldnt worry too much about your heart rhtym for now. I left the hospital with PVCs after my first surgery. I also had the holter test like you.
In the end, my PVCs went away over time completely. Your heart can heal naturally, you just need to give it time.

All the best and I will keep my fingers crossed that your recovery will continue to go smoothly.

I would strongly recommend Cardiac rehab if you can do. I feel I recovered faster this time.

History:- s/p VSD closure and AV repair in July 1992 at the age of 6.
Following-up with cardiologist, echo last 30 years.
Dec 2021 and June 2022 echo shown ejection fraction went down to 45%. LV dimensions enlarged so cardiologist referred to see surgeon.
Sep 13 2022 :- had appointment with Dr Desai at Penn Medicine. He talked about ROSS. Ordered MRI heart and CT chest angio tests
Oct 26 2022 :- MRI & CT done
Nov 3 2022:- Dr Desai looked at test results and he told he can’t perform ROSS due to earlier VSD closure .
Dec 2 2022:- appointment with Dr Ismail El-Hamamsy at Mount Sinai,NYC. I mailed the reports, cds earlier before appointment. He looked at test reports and he confirmed I am suitable ROSS candidate.
Here nightmare started about early ROSS failures/studies. Figured out my aortic root size is 26 mm , valve is tricuspid, STJ & other dimensions are good for ROSS. Had another appointment with Dr Hamamsy on Jan 16 2023. Got Clarified all doubts and questions about being suboptimal candidate for ROSS. He again confirmed that I am perfect candidate for ROSS. So finalized ROSS as primary and Mechanical as alternative if ROSS is not doable in OR.

Confirmed with Cleveland clinic surgeons Dr Roselli and Dr Unai. They confirmed as well I am perfect candidate for ROSS. Dr Svennson referred me to Dr Roselli since he doesn’t do ROSS.

Dr Unai called me directly and talked to me for 30 minutes. He recommended both ozaki and ROSS. He is very comfortable doing ROSS witn Dr Hamamsy.

Previously Surgery scheduled on Feb 15 2023. Got severe cough on Feb 8 2023. Got tested positive for covid. Surgery postponed to Mar 29 2023.

Dr Hamamsy advised me to admit two days earlier to facilitate my state for surgery (diuretics, etc ).

Mar 27 :- got admitted. Inserted needle on left hand for medications. fixed heart rate wires and device.

Mar 28:- Medications (diuretics, blood clot’s prevention) continued. Cleaned the body with special soap at 9 pm.

Mar 29:- BIG DAY HAS COME.
12 AM stopped eating, drinking.
5 AM cleaned the body.
9:30 AM:- Taken into OR
As per notes they given anesthesia at 11:08 AM. But I went to sedation in OR after 10 minutes.
5:40 PM:- Surgery done. Dr Hamamsy called my husband and updated about surgery. ROSS done , Tricuspid regurgitation fixed, Closure of a membranous septum aneurysm using a patch of autologous pericardium. This membranous septum aneurysm was found in OR after opening up. Looks like it’s sequel from VSD done in 1992. Surgeon decided to close this aneurysm of the membranous septum with an autologous patch of pericardium to avoid any turbulence or early failure of the pulmonary autograft.
7PM :- my husband told they moved me to CARDIA ICU
8:30 PM:- My husband told he visited me at ICU. Ventilator, pacemaker wires, urinary catheters, chest tubes are in place.
9:15 PM:- I woke up in ICU. Nurse told surgery is done. I couldn’t believe. I asked again & he said yes its done and its ROSS. He asked me move my hand fingers and legs.

3/30:-
1 AM ventilator tubes removed.
Morning they kept me in chair. Asked me to walk. Walked few steps, got nausea and dizziness. Couldn’t walk.
12 PM moved to stepdown unit from ICU.Chest tubes, pacemaker wire, oxygen tubes(5L), heart rate monitor are in place. Evening Dr Hamamsy Visited and asked me to walk tomorrow . He told if you lie down like this yoh will get more complications (pneumonia, etc). able to eat fruits and drink juice, water.

3/31:- Urinary catheter removed. Walked 1 round. Could do Spirometer only 250.felt very tired, dizziness and nausea. This day had extreme pain in rib. Couldn’t breathe due to this pain. Pain score I said 10/10. Finally assistant surgeon found out chest tube is touching the rib causing the pain. He gave numb medicine (Bupivacaine) through chest tube which eased the pain. Oxycodon stopped since it made me drowsy. They started new pain medication. Couldn’t eat anything due to nausea. Had only fruits and juices.

4/1:- Walked 3 rounds. Ate breakfast. Had lunch & dinner. Spirometer reached 500

4/2:- Right chest tube removed.Walked 5 rounds.

4/3:- Walked 10 rounds(3 times) . Climbed 3 steps. Morning diuretics dosage increased to 40 mg due to swelling on legs. Evening 20 mg.

Pacemaker worries
Resident doctor from Electrophysiology (HeartRhythm) team visited me. She told 80% pacemaker not needed. She told We are watching for heart rhythm and will give advise for discharge in 24 hrs. Evening Dr from her team visited & told I am clear for discharge. She will be sent with holter monitor(zio) to home. 2 weeks monitoring needed. I had junctional rhythm not sinus.

Evening Dr Hamamsy visited and I expressed my worries about pacemaker. He told I will go home on Wednesday & I wont need pacemaker. I asked what to do if emergency at home. He told I m sure I wont need to go for emergency. He strongly advised to walk and be more active.

4/4:- Couldn’t sleep after 2 am. Sitting on recliner since 6 AM until 1 PM. Walked 10 rounds(3 times). Climbed 3 steps(2 times). Temp. Pacemaker wire removed at 3:30 PM. Left chest tubes removed at 4:30 PM. felt better. slept well this night

4/5:- Going home .
Had shower with the help of nurse. Holter monitor inserted. Discharge instructions given. Got discharged at 11:45 am.
Reached home at 3:15 PM. Felt very warm after reaching home. Amazing feeling.

Feel free to send private message or ask any questions here, I would be glad to answer.

Will post about recovery at home in next threads.

Thanks a lot to @tommyboy14 for lot of valuable suggestions and advises.

 

[Mike Ryan]

I'm more keen to hear the post 12 year update ... but glad you're doing well

I am post Ross from Jan-1996…pushing 24 years. No issues , best shape of my life …couldn’t be happier with my decision

 

[MdaPA]

I am post Ross from Jan-1996…pushing 24 years.

You mean pushing 27 years now, right?

You mind me asking who did your ROSS in 1996 as that was around the same time my wife had her ROSS performed in the Philadelphia area?

 

[BAV]

Did you have stenosis, regurgitation or both leading to the procedure?

Also, were you out on beta blockers after the procedure? If so , for how long?

Thanks for sharing as I'm contemplating an upcoming Ross procedure soob

 

[pellicle]

Also, were you out on beta blockers after the procedure? If so , for how long?

FWIW I think everyone gets that prophylactically (rather than oh dear, event management). I see here for 3 months is common. I was about that

Also, its not in your "about" so how old are you?

 

[BAV]

FWIW I think everyone gets that prophylactically (rather than oh dear, event management). I see here for 3 months is common. I was about that

Also, its not in your "about" so how old are you?

Hi Pellicle,

Yes, it does seem most patients post AVR have received beta blockers but from my research it looks like Ross patients have them longer , up to a year to help the new aortic valve remodel and to prevent its dilation. I've taken beta blockers in the past for short periods and I wasn't a huge fan but ultimately I'll do what I have to do for my body.

I am 36. I'll see if I can update my bio. Thanks for the heads up

 

[pellicle]

I am 36. I'll see if I can update my bio.

thanks ... good to know.

on the beta blockers, I'm doing metoprolol tartrate (not succinate) and have found that ideal as it allows me to get some time in the "pre morning dose" and "pre evening dose" to do exersize and still avoid the "resting HR of around 120 for hours on end"

see if this graph makes sense to you

Best Wishes

 

[IronmaninTraining]

Just to chime in. I’m 38 and had a Ross procedure at 28. Highly recommend if it fits your situation. Had great doctors and surgeons at children’s hospital of Pittsburgh.

 

[Mike Ryan]

Sorry I missed your Q from September., BAV.
Dr Stelzer did my surgery in 1996..
I had stenosis from a bicuspid AV..
No meds , no issues…

 

[MdaPA]

Dr Stelzer did my surgery in 1996..
I had stenosis from a bicuspid AV..
No meds , no issues…

I am post Ross from Jan-1996…pushing 24 years. No issues , best shape of my life …couldn’t be happier with my decision

So it looks like you are having a good run with the Ross at 28 years now! Congrats!

 

[sarashreen]

Did you have stenosis, regurgitation or both leading to the procedure?

Also, were you out on beta blockers after the procedure? If so , for how long?

Thanks for sharing as I'm contemplating an upcoming Ross procedure soob

I had aortic regurgitation with tricuspid valve. I have been taking losartan 25 mg or 12.5 mg(based on my BP level every day) so far. Its for 1 year after ROSS as they want to maintain systolic around 110 for 1 year. Initially lisinopril was causing dry cough so it was changed to losartan. Losartan is not a beta-blocker. Losartan belongs to a class of medications called angiotensin II receptor blockers, or ARBs, which are used to treat high blood pressure.

 

[BAV]

I had aortic regurgitation with tricuspid valve. I have been taking losartan 25 mg or 12.5 mg(based on my BP level every day) so far. It's for 1 year after ROSS as they want to maintain systolic around 110 for 1 year. Initially lisinopril was causing dry cough so it was changed to losartan. Losartan is not a beta-blocker. Losartan belongs to a class of medications called angiotensin II receptor blockers, or ARBs, which are used to treat high blood pressure.

that's interesting you were not prescribed a beta blocker. I'm having my Ross with the same surgeon on 8/7/24 and I'm under the impression he typically prescribes beta blocker for a year post Ross.

Maybe there's hope I can be off of them in less than a year . Not a big fan of beta blockers side effects but it I have to deal with it for a year I certainly will