Alex's Guestbook

Alex
Thank You for leaving such a kind message on my guestbook.  First off, Hooray for you, your open heart surgery is behind you! You are actually the first person besides myself that I have met who has gone through both Hodgkin's Lymphoma, and open heart surgery to replace the damaged valves. I was living in Ohio at the time of my cancer in 1995, and treatment was very intense because my cancer came back after two years.  Now, I have a dual pacemaker with upper and lower leads.  I am not a medical specialist, just a patient, but as I understand, the pacemaker only regulates for slow heartrate, not fast heartrate.  Lately I've had to double-up on Metoprolol dosage, for racing heartrate.  I don't go back to see  the Dr. until April.  When I said I died on the table twice, I did. I was gone, they had to resuscitate me.  They had to go back in and open me back up twice to repair leaks.  Personally, these are extremely difficult memories.  My wife was left quite traumatized through the entire experiences, both the Hodgkin's and the heart surgeries.  I think in many ways, it has been rougher on her than for me.  God Bless our Care Givers!!!  But we are both still here for a reason.  Alex, may God's tender mercy be great on both you and your family. Heal Well.

Happy Birthday, Alex!  

I hope you are feeling well.  I know it's slow going at first but every week more healing is complete and by your next birthday, you'll be doing a happy dance!  Here's to a marvelous birthday today and so many more to come!  Cheers! 🕺🏻

Hi Alex I'm new to the group so I'm not sure how all this works still learning. Just wanted to say congratulations I don't really know what an aortic regurgitation is I have stenosis of the aortic valve which I am going to have the tavern method performed on March 6th. I would love to hear a little bit more about your surgery if it's not triggering for you

Alex, only one more sleep! You're going to pop those eyes open in the morning and your heart team is going to be readying themselves to perform a miracle on you. Sending lots of prayers your way for a successful surgery. So thankful you're having it done at Cleveland and that they're up on their toes with your situation. I'm excited to hear another chapter of your story. You've got this, Alex! 

Hi Alex,

I can tell you that you are in great hands at Cleveland Clinic.  The surgical teams run like a fine tuned orchestra, each person involved in your surgery is extremely experienced and they are quite focused before surgery and plan for its success.  The nursing staff is really attentive and kind, also extremely experienced.  Please look at George Gardopee's profile on this site for in depth reporting on his surgery at Cleveland Clinic.  Ginny Turner and I also have had OHS there and in my case I had my mitral valved replaced ( pig tissue ) my tricuspid repaired as well.  You'll have a great outcome, try not to worry.  You'll wake up tomorrow in a small, curtained space in ICU and in a day or two be back in your room and go for that first walk down the hall with the nurse walking with you.  The nurses will do anything for you, you'll see!  My surgery was in Feb so I'll soon have my one year anniversary and in October I went to my 50th High School reunion and guess what?  I danced ALL night.  I'm so happy that I chose CC, you will be too, I assure you.  👍🏼

Hi Alex! I really hope that everything goes as planned tomorrow.  As you know, these surgeries are amazing miracles, yours will be too!  I am sure you will be great! I am here, if you want to chat. Have a great day! 

Hi Alex! I wanted to wish you well in your upcoming OHS at Cleveland Clinic. I had a similar surgery for radiation heart disease at CC on September 19, 2022. I had a replacement of the mitral and aortic valve, and repair of the tricuspid valve. I also had an aortoplasty (repair of the aorta) but did not have to have the commando procedure, which the surgeons discovered once they go into my chest. I also had a previous median sternotomy in 1985 for tumor biopsy, followed by 4 weeks of radiation therapy, so having a second sternotomy under these conditions was scary but it couldn't have gone better. It was a 7 hour surgery. I had almost no pain, aside from the first day of surgery when they were moving me into the ICU bed (ouch!) but nothing after that, even that evening. The anesthesiologist even came by that evening to make sure I wasn't in pain as he said it was a bit difficult getting through the sternum and he was so pleased I didn't need any additional paid meds.  I almost never used the pain medication pump and really only used it twice. Once when they were putting in an external pacemaker and another time for some gizmo that went into my neck. Everyone is different, though, especially radiation heart disease patients where the surgeons really don't know exactly what they will encounter until they get the chest opened, so stay on top of your pain. I did have quite a few complications, primarily Afib, which they couldn't get under control and could not put in an internal pacemaker due to calcification of some of the veins. I spent 6 days in the ICU total. The ICU nurses were terrific and I had excellent, attentive, and kind care. As you might expect, the ICU is noisy, with lots of alarms and people going in and out but I honestly didn't notice much but being able to listen to music and books with ear buds was a blessing. I spent 5 days on the step-down unit. I felt totally exhausted in the step-down unit and felt exhausted when they discharged me. After discharge, we went to our hotel and I had a stroke about 12 hours later. Radiation patients have an increased risk for stroke, as your surgeon will tell you, plus for me the Afib contributed, too. Just make sure if you have Afib, your INR is in the therapeutic range when you leave as mine was not. Fortunately the CC is ranked about 7th in the country for neurology and I got awesome treatment for the stroke. I had surgery via a catheter that removed the clot and I have no deficits. I was two days In the Neuro ICU and 5 days on the Neuro step-down unit , then 5 days in an off campus rehab center. I got covid in the rehab center and was in the hospital at home for 5 days. Recovery from this surgery has been very slow for me. The exhaustion has been the worst element of the process but I'm gradually getting better and every day have had some progress; I can walk 1.5 miles and am back to yoga and Tai Chi. I also have pleural effusions, which have slowed me down, and yes, radiation patients are prone to getting these because of damage to the lymphatic vessels in the chest from the rads. I also lost about 20 pounds that I haven't been able to regain because I lost my sense of taste somewhere along the line and nobody is quite sure why. I'm guessing it wasn't from the surgery. Again, experiences are as varied as there are patients, so these complications may not be an issue for you. I just had a CT angiogram done at my local hospital for a virtual follow-up with my surgeon at the CC this Wednesday, the awesome Dr. Tong, and all the repairs and new valves are humming along. You are in excellent hands at the CC and there truly isn't anything they haven't seen with their radiation heart disease patients, which means they're prepared for everything and will give you the best care available. I'll be thinking of you and sending you good vibes, fellow survivor, and I know you will do well.

God bless you, Alex!  Thank you SO much for sharing your ongoing journey, and for giving us newcomers your insight and experience.  I'll be keeping you and others in my prayers, and you just keep your chin up and we all want to hear how it went after your recovery.

Hi Alex, just recovering from mitral valve replacement with mechanical valve at age 57.  My surgery was 12/23.  I had a few hiccups and was readmitted out of an abundance of caution, but have been home now for 4 days and feel pretty darn good.  Up and around and doing lots for myself.  I can’t say it was easy, but I kept the faith that’d I’d come out OK on the other side.  Best of luck and all the comfort in the world to you.  It sounds like you are in terrific hands.    Look forward to hearing about your recovery!

HI Alex, thinking of you.  You are almost there and you will soon be in recovery.  Great hospital you are going to; can't get any better.  And most of the work is now in their hands; they will take care of you really well. Godspeed.