Michael's Heart Valve Journal

Celebrating year three of a mitral valve repair completed at the Cleveland Clinic. Great thanks to the medical professionals and Dr. Gillinov for mending my heart.

Doing great!!!

Just a shout out to encourage the heart community especially those preparing for surgery. I recently celebrated two years after mitral valve repair and am doing great. Blood pressure and heart are all back to pre-surgical number and no health issues.

The skilled health professionals and Dr. Gillinov at at Cleveland Clinic are my heroes.

I periodically get spreecast information from CC. The attached link/webinar should address questions related to pericarditis and pericardial conditions which I know can be an issue many in the community deal with.


https://www.spreecast.com/events/pericarditis-and-pericardial-conditions

I celebrated one year post mitral valve repair on July 14, 2015. I am back to the rush of a normal life. The tachycardia subsided after about 9 months of recovery which just reinforces we all need time to heal.

There are others on the journey to health and I wish them well. They can always contact me if I can be of help.

Had a good visit with a sleep disorder physician this week. I fail to see the link between an elevated heart rate and potential tachycardia.

Next steps are a consult with an electrophysiologist to discuss potential causes.

Visited the cadiologist this week to discuss the elevated heart rate. There appears to be no reason from a cardiology perspective for such a result.

We are going to look into sleep disorders, probably a long shot, but might be worth it. Exercise is going well.

Had an Echo and bloodwork last week to investigate the reason for elevated heart rates (>90 bpm). Bloodwork appears normal so will see what cardiologist says.

Feeling very good and continuing exercise program with weights and aerobics. Job is encroaching on my time and need to push back more to ensure I do not slide back into old habits. It is a busy season. Was able to write to some heart journal friends with some encouragement and advice going forward.

This was the first week without rehab and it is interesting how the "urgent" things of life tend to creep in and steal the time needed to keep us healthy. I made two of my three days, but it is clear I will need to set work schedule bounds to ensure I can continue my exercise.

As I have returned to work and all of life's deadlines it is pulling me away from reading and posting for the Heart Valve community. I guess that is a good thing to move on. I continue to review and respond, but it is much less frequent as when you are in process.

I complete my cardiac rehab on Monday, November 11, 2014. It has been excellent to get me back into exercise and I am beginning exercise at work gym.

I have been experiencing some sinus tachycardia (>100 bpm) when I wake up in the morning and throughout the day. I have questions in to Cleveland Clinic and my cardiologist. My blood pressure is very good (120/80). Hoping not to go back on any medications.

I think I got a cold from my son this weekend. Felt really puny on Friday during the workout and the weekend. I am skipping rehab today to get some rest and get over the cold.

This is the first bout of illness since the surgery so not too bad.

I reduced my beta blocker and am down to one last week. Friday was a little touch in rehab. I am assuming it has something to do with the drug. Blood pressure was also a little too high.

Looking to be clear of all medications to see what numbers my vitals equilibrate.

Ran for the first time in rehab, lifted heavy weights on the machines. Had a most excellent day. The next goal is to jetison the beta blocker next week.

I visited my cardiologist last week and he does not need to see me for 6 months. Finishing off troprol and rehab continues until Nov 5. Feeling strong, just occasional days when my blood pressure is too low (attributal to the toprol).

Work is going well, keeping hours to 8 a day.

Nice to be back at work. Continuing rehab and getting stronger. Colleagues and coworkers have been nice in welcoming me back. I tell them I am glad to be back at work and it sure beat the alternative :). We were notified that a colleague's brother died suddenly at the age of 40 and it gave me pause wondering if he had heart disease. I was saddened to hear of his loss.

I restarted my exercise program at work after a several year absence (working, job and life tend to steal/take this time away from us). I have always been very active and this was a key in being able to have the minimally invasive procedure. I always walked everyday, but the surgery reminded me that my health is critical to the health, wealth and well-being of my family. This is much more important than my job.

The first week back I found I am not "sweating it". Not owning other peoples problems and in the whole scheme of things, the activity is just not that important. Others are going to have to be accountable for their actions and the quality of their work. Having heart surgery gives you time to reflect and reprioritize your life to suit what is important to you. I plan to continue the journey on what is best for my family and me

Finished up my last "Pritikin" video today and Friday rehab. Was able to extend my rehab sessions until November 3. Had a much better day today at rehab.

Just contacted Aetna and I plan to go back to work full time (8 hours/day) on September 15. Need to be strict with time as I found myself tired a few days. I do not think I got enough sleep. I am feeling good and glad to be back at work.

Worked a half today and continued rehab. Good to be back at work, starting with half days was a good idea to ease into the mix and stress.

Plans are to go back to work on Monday September 8, 2014 and start with half days (4- 5 hr). This was the plan that my cardiologist and I decided. We will see how it goes. Work in the morning with plans for rehab in the afternoon.

Looking forward to getting back to work, just a bit concerned about the intensity but I know my focus is still on healing while I go back to work.

Had a great day in rehab. My strength is really starting to come back including stamina. Really fortunate as there are some really sick folks going through rehab. The benifits of robotic procedure recovery really seem to be noticeable at this point. I am enjoying the exercise.

Trying to stop the tylenol today, see how it goes. Down to aspirin and the beta blocker.

Started rehab today at the Heart Care Institute here in St. Louis. Lot's of paperwork to review with the nurse.
Got wired up with and EKG for some treadmill walking and met with the cardiologist. Watched a video on nutrition for the Pritikin system. Just good nutrition which we already practice.

No problems with the walking and the vitals all look good. Only meds are toprol, baby aspirin and tylenol. Set up to attend Monday, Wednesday and Friday for the next couple of weeks. It's all good in St. Louis!!

My walking buddy Ruby

Met with my cardiologist today and took me off more meds (omeprazole). Took out some residual sutures, reviewed records from Cleveland Clinic and recommended rehab. Looking forward to rehab and some physical activity beyond walking.

The intercostal muscles seem to be healing and hurting less (Yah!)

I thought I would share some thoughts of this procedure based on my current recovery.

1. It is amazing with regard to physical function and capability four weeks post op open heart surgery. Although I still lack stamina with physical activity, I still think it is amazing what these health care providers have done to repair my mitral valve.

2. The robotic approach and various incisions was more painful than I anticipated. My wife reminded me that various physicians indicated there may be more pain but a shorter recovery period. Still not remembering those conversations.

3. Your personal health prior to mitral valve surgery is critical in providing you with more options. I was in good health with the exception of the mitral valve which opened opportunities for alternative surgeries.

4. Have your loved stay with you the first night on the floor. The transition from the ICU unit to the floor can be difficult and you need your advocate, I do not care how good a hospital that your are in.

5. Make sure have a sleeping mask and ear plugs for the potential noises from the machines and patients in ICU. Allowing you body to rest and heal is important.

6. No matter where you decide to have your surgery and who you choose as a surgeon, you and/or spouse must be well-educated and your strongest advocate. There may be some bumps in the road and you and your loved need to know the best options to challenge the nurses and /or physicians. Go to the local hospital librarian and review the literature on the subjects. I had to challenge my cardiologist and spouse about what procedure that I wanted to consider as they were "old-school" median sternotomy fans.

7. No matter how sharp you are, you will be taking some powerful medications. Many of these medicines dull your senses and response time and many of them make you tired. Although it may not adversely affect your decision(s) it certainly delays your decision making processes.

8. You are going to have some excellent nurses and patient care technicians and some mediocre nurses and patient care technicians. Set the expectations high for the mediocre crew so your needs are best met. You will quickly notice the difference between the high performers who are proactive and the "I have four other patients" and need to get through the shift.

9. It would have been great to have had this surgery locally in the St. Louis, MO region but the reality is that no hospital in the region would come close to the Cleveland Clinic expertise. That said, being remote to the Clinic provides some challenges in follow-up care even with a primary care physician and cardiologist. You have to be prepared and proactive to get the physicians to address the proper issues (as minor as they might be), especially when the option may be a >10 hr drive time to the Clinic. I still believe this remote surgery (away from home) was the best option for me and my family, but it required a lot of help and planning to ensure kids were cared for, parents could attend surgery, post recovery travel was planned. This work/planning needs to be done before the surgery or your caregiver needs to be able to complete these activities as part of their follow-up.

Spending the weekend in Cleveland to recover a bit. There is a lot of pain in the pectoral area. Pain control is using oxycodone. Appointment scheduled for Monday with nurse practitioner to ensure on pace for medication follow-up. Heart has been feeling great with no irregular rythyms or late afternoon exhaustion.

Dr. Gillinov and the surgical team evaluated me and performed a robotic surgery on Monday, July 14. Pain was controlled using a fentanyl. I am scheduled to leave Cleveland Clinic today.

Totally exhausting day at the clinic. Cleveland Clinic really has a lean process moving folks from procedure to procedure. Completed the following: blood work, CT Scan, chest X-ray, echocardiogram and ultrasound of both femoral arteries. Some bumps in the road with regard to the Transesophogeal echocardiogram transfer. All worked out after some discussion today and proper data transfer. Preoperative discussion is scheduled for Friday.

It has been a bad day with regard to the valve symptons so I am ready to get the valve repaired/fixed.

It's been a while since an entry. In the last stages before surgery (insurance review, application for short-term disability etc). Last day at work is July 8.

Preoperative testing at CC is scheduled on July 10, 11 with surgery scheduled July 14.

I completed the registration with MyChart which is the Clevelend Clinic Electronic records system. Travel arrangements are made.

Downloaded the imagery information and music for relaxation. I am wrapping up everything at work to turn over to a colleague to handle for the next two to three months. Just need to prepare my mind and spirit and complete the preoperative testing.

Due to a cancellation, Dr. Gillinov was able to offer surgery on July 14 (Yea!!). That was great news and some relief to get the preoperative testing scheduled within the next five weeks.

Spoke to CC today and it appears Dr. Gillinov is booked till the end of August.

I will take the weekend to evaluate options, but it appears that CC will not be the best option based on the literature indicating long term mortality is improved by early surgical intervention (less than 3 months) compared to waiting. The "watch and wait" approach is no longer recommended. I will sleep on it.

Mayo has offered a ministernotomy as the the minimally invasive techniques (aka Robotic) do not appear to be available until August. They do not do a minithoractomy August seems like a long time with current symptoms so may need to go with the ministernotomy approach.

I spent this weekend recovering from a heart catheterization and CT scan this past week. These are the last two tests planned before submitting my record to Dr. Marc Gillinov at the Cleveland Clinic and Dr. Rakesh Suri at the Mayo Clinic.

My diagnosis is bileaflet mitral valve prolapse. Preliminary indication via surgical consult is I am a good candidate for minimally invasive surgery. Will need feedback from surgeons to verify this information.

I spent the week scoping out locations for hotels in Cleveland. Beachwood is a nice local about 20 minutes away from the hospital with food taken care.

http://homewoodsuites3.hilton.com/en/hotels/ohio/homewood-suites-by-hilton-cleveland-beachwood-CLEBDHW/index.html