Mark's Journal

Exactly 1 year ago today (2/28) I had my surgery. I still feel myself getting better every month but now it is incrementally smaller. The doctor gave me the go ahead to lift weights and get a good muscle burn. That was such good news for me. I had no idea recovery would take so long. The only downside is that the doctor believes I will be on medication for the rest of my life but only because they are unsure if my heart is doing better because of medication or because of me. This last year flew by.

My OHS was on February 28th so it's been just about 5 months. I occasionally hear the clicking of my mechanical valve which is almost reassuring for me. I am used to the loud and heavy heartbeat that I hear most of the time. Sometimes I feel it in my throat. What is distressing is that I worry it is not good for my heart. I was finally able to see the cardiologist my surgeon recommended. She is very good but doesn't know why I can hear and feel my heartbeat so firmly. The only explanation I have been told by several different nurses and people in the medical field is that my heart can now function normally so the pounding is normal and my heart trying heal after being weak. My new doctor did increase my dosage of medications but I was on the least possible dosage before and was cutting pills in half as well. What I really enjoy is how I feel after walking on the treadmill. I really push myself now and set a steep incline with a very fast pace. I walk this way for about 3 miles and end up with a good sweat. On days I don't use the treadmill I walk a leisurely 3 miles spread out between three walks a day outside. I started a new job and it just so happens someone at my job has had open heart surgery 17 months ago. I've been talking with him on and off. It's good to talk to people in person. Which reminds me, my new cardiologist said my body is healing well but I still need to make sure my mind and emotional state are healing as well. She runs a group that meets once a month for OHS patients so they can get together and support each other and people who are going to have surgery. First time a doctor has ever told me to think about my mental and emotional state too.

First day back at work! Yesterday 4/25 was 8 weeks recovery. After my echo cardiogram on 4/16 it was determined that I have some complications that will require a "cocktail" of meds as the doctor described it. It is do to my enlarged Left Ventricle. The cocktail is to help my heart return to normal function. The doctor said it may never for which I will need to continue to take the meds for a long time. Some days it feels like my heart is beating right out of my chest because it is beating so hard. My heart rate usually stays between 85 and 105. Feeling every heart beat is different and sometimes unnerving. I purchased a FitBit with heart rate monitor to help. While lying down, if I take a deep breath my heart will skip a beat.

Saw a cardiologist today and tomorrow it will be 6 weeks. She said everything sounds good and I will be soon going in for my first echo cardiogram since the surgery. I had a ton of questions and worries specifically about my aortic trunk replacement and the new valve. She put me at ease and is slowly weaning me off the metoprolol. I'm happy about that but I will be conscious about my heart rate while I am going off of it. People ask me if I am feeling better everyday and what OHS patients say is true, I think of it as feeling better every week or every few days instead. I hope everyone is doing well and getting better.

It's been 5 weeks now since my aortic root and valve replacement. The surgeon said I could drive at 4 weeks but my chest is still sore and I don't feel as strong as I could in case I needed to turn the steering wheel quickly. I'm hoping to start driving a little bit this weekend. The thumping of my heart in my chest is so loud and firm sometimes that it moves my torso. I understand that will decrease with time but it is sometimes scary being able to hear and feel every beat or missed beat of my heart. The one thing that is difficult is the dizziness caused by the metoprolol. I hope I I don't have to take it forever. Recovery is not me. I want to be out and work around the house. It is difficult especially since it's only every few days that I feel better. What is great is how positive the anti-coag nurses are. At my last visit she said in 6 months I will be feeling great. She also insisted that I eat spinach and kale.

It will be 4 weeks post op this Wednesday. A couple of nights ago I started having an irregular heart beat (A Fib) when I lay down. It would only be for about a minute or so then my heart would go back into rhythm. All the doctors say it is nothing to be concerned about if I don't have any symptoms (shortness of breath, etc). I was told by two different doctors that about 1/3 of all people who have had OHS get it and I am taking medication for it. I was worried for a while but the advice from doctors helped. They say the heart doesn't take to being touched and worked on. My anti-coag nurse said I will feel really great in about 6 months. I still get dizzy and vertigo and there does't seem to be any thing that I am doing to cause it. I think it will get better with time. Overall I am doing well. I read from someone that it's 2 steps forward and 1 step back. That is a good description.

I had my final post-op with my surgeon today. It's been 19 days since my OHS to replace my aortic root and valve with an On-X. The surgeon said I am doing good and healing quickly. However, the vertigo I had in the past has returned. That takes a lot out of me. I'm thinking it will pass as now my heart is functioning properly. The other thing that is a little annoying is my heart sometimes feels like it is going to beat right out of my chest. The heart beat is so loud and hard my wife can hear it while sitting next to me. The clicking of the mechanical valve however, is not bad at all and I only hear it some of the times.

It's been 12 days since my surgery. From Thursday until Sunday I was working through vertigo (dealt with in past) and a nasty cough that would keep me up all night hunched over. Today was the first day I see real improvement and felt good enough that after my doctor's appointment I went out to eat lunch and have some coffee with my wife and a small group of friends. My voice isn't back yet from the breathing tube but the doctors say give it time. I'm starting to feel better every day. So wonderful. After talking with several doctors about Coumadin I don't need to alter my diet. I am going to continue my healthy diet and eating greens. When I travel the doctor just said to keep a bottle of Vitamin K with me just in case my greens intake goes down. My anti coagulation doctor gave me some good advice. "Don't let one little pill alter your life. Live well and be happy."

I'm 1 week and 1 day post surgery. I got home Tuesday and both that night and last night I sweat profusely and have to get up to pee just about every hour. So annoying. I still can only whisper too because one of my vocal chords is "stunned" as stated by the ENT at that has at least another week to heal. What's amazing and what my doctor said would go away is while I lay in bed my heart feels like it is going to beat right out of my body (no clicking). It seems to shake my entire torso. If my doctor didn't say it was okay I would be worried. Yesterday was the first shower. Oh how that felt good. I have also been walking back and forth in the house 4 x 15 min daily. I have nausea coming back so that is difficult.

I got home not too long ago. So glad to be out of the hospital. The first 4 days weren't so bad because I knew someone was there immediately if I had an issue (well I don't remember the first day). I was there for a total of 6 days. Home feels like a dream. To be outside and breathe the fresh air was nourishing, and not a cloud in the sky! I think I said this before but the pain wasn't an issue for me. It was the nausea and the constipation. Right now the only pain I have is in my collar bone and neck. Just a stiffness and soreness and Tylenol covers that. I wasn't hearing my click at all while in the hospital even when it was quiet. Now that I am home, sometimes I hear it and sometimes I don't. It doesn't bother me at all when I do hear it. Thanks in advance everyone!

Finally able to sit in a chair and be comfortable. I’m doing okay it’s just the queasy feeling in my stomach that’s preventing me from wanting to do much. But must eat and walk. Trying.

Saw my surgeon this morning. He is performing the Bentall procedure. I am going with a mechanical valve. Of course that means blood thinners but he did say that new blood thinners will be out in the next 5 to 10 years that are much better. What was scary is that if this wasn't accidentally caught, he said I would of had at most another 3 years of life. I am so grateful that this was caught and that it is fixable and that I will probably feel better than I do now once healed! My surgery is on Wednesday morning at 7:30am and I will arrive at 5:30am. This is happening. Wow.

One week to go before my surgery. I talk to the surgeon on Monday to find out exactly what is going to be done. I had a panic earlier in the week because my insurance had approved the procedure and in the document they sent me the surgeon listed abbreviations for things that I was unsure of. My cardiologist made it sound simple with a valve and root replacement. The insurance paperwork says, "AS-AORT GRF W/CARD BYP & AORTIC ROOT RPLCMENT". Wow. I've worked through it so now I am calm. Not trusting my cardiologist much so I probably change to one at OHSU where my surgeon is. I know my surgeon is great.

I'm feeling right now that I can't wait for my surgery. Being light headed, the low cough, short of breath, and thinking that there is a pain around my heart is really getting to me. I want to get on with my life and my doctor has said don't do anything except walk for day to day activities.

In two weeks (Feb 28) I will be getting my surgery. These 2 weeks will be the longest of my life. My stress and emotions are all over the place. When I feel okay I think this is unreal. The doctor must have made a mistake. When I feel out of breath and light headed I think my heart won't make it these next 2 weeks which causes more panic. I'm trying calming techniques which do help. I'm trying to stay positive also because I know that helps with recovery too. I know it's hard on people who care and are/will be helping me because my attitude can get sour about all this.

I called OHSU this morning and found out they already have my initial appointment and surgery scheduled! I talk with the surgeon on February 26th and my surgery is February 28th.

I did not get good sleep last night. I woke up at 3am in a panic with an adrenaline rush so my heart was racing. That of course caused me to worry about my heart and how my atrial artery is at 6.8 and my cardiologist said no to any activity except walking to do my day to day work. So I lay in bed with my heart rate going up and down and I think my worry caused acid reflux which I felt in my heart. All kinds of anxiety as I lay there wondering if my aorta is going to rupture.

Talked with my cardiologist on the phone and she said the surgeon I am seeing on Monday is Dr. Robert Dubose. My cardiologist also said she wants to get me in for surgery as early as Friday 2/16/2018 or early the week after. I will know more on Monday. I am going to try and get in for a second opinion but my cardiologist did not want me to wait very long and highly suggests I keep to the schedule. Dr Dubose is good but the hospital is questionable. One bit of good news is that the aortic arch is not damaged and all of the valves look good. So I will only need the aortic trunck replaced and the aortic valve.

I don't recall who my cardiologist recommended for the surgery but it would take place at a hospital that gets terrible reviews! I am going to get a second opinion at a different hospital (Oregon Health & Science University). OHSU is a great place and everyone recommends it. I still need to get my TEE on Tuesday but it is so nice in this day and age to be on the phone with a new office and they have instant access to my record and previous CT scans.

Never had any heart issues nor did doctors say they heard anything of concern. I'm 46 and went to a new primary doctor on Jan 30 and he heard a loud murmur and hurried an echocardiogram. The cardiologist rushed me to see her after reviewing the results. The results are an ascending aortic aneurysm, moderate to severe AI, and suspect bicuspid aortic valve. My aortic root dilated at 6.8 cm. I've got 2 CT scans and a TEE scheduled in the next 7 days to confirm everything. Then to see the surgeon and then the surgery to replace the aorta and valve with a mechanical one. I'm very healthy and enjoy exercise with weights. I don't feel anything right now except for the severe anxiety and panic which causes my heart to beat fast and my mind to race causing more fear. More scared about the recovery and how the mechanical replacement will hinder my life with lifting weights and objects around the house. It will only be about 4 weeks in total from discovery to going home from hospital. Thinking of going dancing with my wife to take my mind off of this.