About Me (In My Own Words)
First, I want to say sorry for such a long story to start out. I am 5 months out from surgery and have had a great deal happen to me with complications. I want to express these so others see what complications can happen and I hope others that have gone through what I am going through can share with me there experiences and give me direction and hope. I would have started this prior to my surgery had I known about this site. I just learned of this site from my friend who just had valve surgery.
I am a 46-year-old male. In March of 2010 I passed out while exercising at the gym. I was taken to the hospital by ambulance and the emergency room doctor found I had a heart murmur, which they told me was the cause of me passing out. They did not perform any tests on me and referred me to a cardiologist. My cardiologist had me have an echocardiogram, which revealed I had moderate Mitral Valve Prolapse-Regurgitation. I was told that it only needed monitoring. I continued with my normal life style: exercising regularly and eating right. I even started losing weight. I was always determined not to follow in my father’s footsteps. He had a heart attack in his 40’s. I had no concerns because the cardiologist said I had years before I would have to worry about any surgery.
In March 2011 I had a follow up echo. I had no other episodes of passing out. This time the echo showed that my case was now severe. I was told I needed surgery. I thought to myself how could this be? I took good care of myself. I feel good. I did some research on my case and found that I had been experiencing the symptoms for years. When I finished exercising I got really tired and wanted to sleep. I could never understand this because I was always told that exercise gives you energy. Not for me it didn’t. Well anyhow, I researched area surgeons and how the procedure was done. Each surgeon told me that I needed surgery ASAP. They all told me that I needed the valve repaired and not replaced. All but one told me that they would have to go through the sternum. I was told that recovery time would be a couple months out of work. I was very active and really didn’t want to be laid up for months, let alone I couldn’t afford the loss of income. I found one who came highly recommended and was at a very high profile heart hospital. He did the procedure with robotics. He told me that it was minimally invasive and I could return to work as soon as I felt like it. He told me it is a 95-97% successful rate. I chose to go with this surgeon.
On May 18, 2011 I had my surgery. I was scared. I didn’t have time to prepare my family because of the shortness in the need for surgery, which I was told by the surgeons I needed it done within two months. I felt confident and comfortable with the surgeon. He listened to me and answered all my questions. A trait the other surgeons didn’t have. Well the surgery didn’t go as the surgeon planned. He used the robot to do the repair and then after taking me off the heart-lung machine he did a CT and found the valve was leaking more than it did prior to the surgery. He immediately put me back on the heart-lung machine and performed a sternotomy and ended up replacing my valve with a porcine heart valve. I ended up in the hospital for seven days after my surgery. I can’t remember much. During my stay in the hospital I had a lot of clicking and popping going on in my chest. I told the surgeon and nurses but the surgeon could not determine it was happening, even though one on the nurses heard it and became concerned. I was told that any clicking or popping should be reported immediately. The surgeon did a CT to see what was going on and told me everything was fine. He told me that it takes about 12 weeks for it to heal. I had no pain. While in the hospital I also started having something like a spasm with my left eye and I would see a bright pinpoint light. I mentioned this to the medical staff and doctors and they told me that it was not from the surgery, even though I did not have this prior to surgery. I was told by one medical staff that it was from the anesthesia and will go away. When I was released I was given very little instructions in what I could and could not do. When I asked the nurse she told me that everything will be writing. I was told not to drive for two weeks and to use a pillow against my chest to brace it if I coughed or sneezed and not lift more than 10 pounds (“a gallon of milk”). This is all the discharge papers said.
Two days after being released from the hospital I ended up back in the emergency room because I kept passing out. I was admitted and they found that the fluid around my heart has increased and I was in Atrial Fibrillation. I ended up in the hospital for another 6 days. They just monitored me and gave me drugs to get the fluid out from round my heart. When I was released I was still in A-Fib. I was told that it wasn’t harmful and could live my life with this condition. I told the surgeon and nurses again that I was still having popping and clicking in my sternum and again the doctor told me it will take about 12 weeks to heal. I left with no restrictions other than those stated earlier.
After my release I made arraignments to start cardiac rehab and began that. I was working my arms and legs very slowly and not lifting more than five pounds with my hands. I was following all the instructions of the nurses at cardiac rehab and what the release instructions told me to do. I wanted to get back to a regular lifestyle ASAP and didn’t want to mess that up anyway. I was however still having clicking and popping in my chest. The nurses at cardiac rehab became concerned that I was working my arms so they told me to go back to the surgeon to reevaluate me to make sure all was ok. I made an appointment with the surgeon. I stopped exercising and using my arms. I was still having dizziness and black outs which I was told was from me heart meds, and not to worry.
Then two weeks later, on Father’s day, I ended up back in the hospital because I had an infection in the sternal wound. My stay this time was 7 days. The surgeon ended up having to cut the infected pieces out of me. The good news is that the infection did not effect my blood, bones and valve. Also the good news is that during my stay an electrophysiologist did a heart ablation and got my heart back into sinus rhythm. At this time I only had the occasional palpation. My surgeon appointment was scheduled for a time while I was still in the hospital so the surgeon did another CT and said all was ok and that it will take 12 weeks to heal. He again could not determine that this was occurring and told me to stop using my arms. I made mention to him again of the bright pinpoint light in my left eye and the spasm I keep getting. He again told me that it was not from the surgery and that I should see and ophthalmologist. When I would have the spasm I could not see out of my eye as there was no focus. I asked people to look at my eye while this was happening and they didn’t see anything wrong. I was also told by my cardiologist that my heart medications will make me dizzy and have blackouts on occasion and that I should be careful when getting up. Just so everyone knows this was not my original cardiologist. When I was in the hospital I was being treated by a cardiologist from the hospital. To this day I don’t know why that was. I found out later that this cardiologist was treating me for bypass and not valve replacement.
After my release this time I returned to cardiac rehab and completely stopped using my arms as much as possible to help the sternum heal. Although the popping and clicking seamed to be getting worse, especially in bed. After a few weeks the nurses at rehab told me that this was not normal and that I should see the surgeon again. I saw him and he again did another CT and told me that everything is fine. Now he told me that it will take six months for the sternum to heal. He told me that he could not detect any clicking or popping and that it is all “in my head”. This infuriated me. He also told me that there is no reason to see him again and that all follow-ups should be done with my cardiologist. I also saw an eye doctor and he could not find anything wrong with my eyes and told me that I should see a neurosurgeon.
I decided to get a second opinion regarding my sternum. At the end of August 2011 I saw another surgeon. He was very concerned when he saw the CT’s the other surgeon did. He also could feel popping in my chest when he put his hand on my chest and told me that it was not in my head. He had me take a bone scan, blood test and another CT scan to see what was going on and to make sure the infection was gone. When the results came back the infection was gone. He told me that I have a 5mm gap in the sternum and that dehiscence is going on. He said this was also in the prior CT scans and there has not been any changes from the other CT scans. I asked him if it was something that I did, as I was being very careful not to damage anything, or was it from the surgery and the wiring, Note. The wires were still intact. He told me that “right now let’s just be concerned about getting you better”. He told me that we could wait to see if it would eventually heal. He told me that it could take up to a year to two years and it will develop a false joint, making my sternum weak. The other alternative was putting plates in my sternum to bring the two halves together for them to heal. He said the later would be heal the sternum quicker. My concern was having more complications. I decided to wait awhile longer to see if there is any improvement.
I now have a CT scheduled for this Mon 10/17/11. I have not had much clicking and popping in the last week and a half. One of my cardiac rehab nurses suggested wrapping my chest, which I have been doing for about two weeks now. I am off all meds now. I am still getting dizzy and having black outs. In fact, a few weeks ago I actually passed out and fell down. I woke up to my wife yelling, “Are you ok!” and my kids screaming and crying and an ambulance responded. I am also having heart palpations on a regular basis now. I can actually feel it. I am being monitored by my electrophysiologist who is concerned with what is going on. I see him on 10/18/11 for further testing to find out why all this is going on. I am also still having spasms and the bright pinpoint light in my left eye.
With that I am caught up to the present time.
More Info About Me & My Heart
More About Me
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I am from:
Mount Pleasant, Wisconsin