Ruth's Journal

My Journal Part 2: Somehow Part 2 was lost when I attempted to post it, so I will re-cap it here, but in a much shorter version. During my heart valve repair, the surgeon placed a suture through the circumflex artery that run around the back of the heart. As a result of the artery being impinged, I had a heart attack and stroke the next morning and had to be rushed in for a 2nd heart surgery - to bypass the damaged artery. Recovery did not go well. I was in a coma for about 10 days, required at least 17 blood transfusions, was in A-fib and just about everything that could go wrong did. Since I was in a coma, I had no recollection of this. But my husband was told that I was not expected to pull through. My first waking memory was that of being in a CAT scan machine and a nurse holding my arm above my head, telling me they were going to take the chest tube out. It felt like a snake making its way through my body, but was not painful. Then a nurse told me that I was going to be taken to my room. Still, I had no idea what had happened. I assumed I had just come out of surgery. When I was taken to my room, there were what seemed like an unusual number of medical people buzzing about and there were a lot of monitors and medical equipment beeping. My husband looked concerned. I felt my chest to see if they needed to open my sternum and yes, they had. I could feel the sternotomy incision. When we were left alone, my husband told me what had happened. Heart attack. Stroke. Two heart surgeries in two days. Coma. In cardiac intensive care for 10 + days. All the things that happened to me are listed in the consent form that heart patients are required to sign. Chances of these kinds of complications are less than 1% at the Cleveland Clinic. I was the unfortunate one. My surgeon came in and repeated what had happened. He said the catheterizaton did not show the circumflex artery to be where it actually was, thus the suture being placed through it. He was very distraught. Very apologetic. I could see how terribly upset he was. But not nearly as upset as me. I still had a feeding tube in, a urinary catheter and various IVs and some kind of contraption on my neck that allowed blood to be drawn every few hours. I was in A-fib and having horrible anxiety. I just couldn't settle down or eat or sleep. I did not have any chest pain, but had some upper (cervical) back pain. Since I am allergic to narcotics, the only pain med I could have was Tylenol. The next shock came when they tried to get me out of bed. My legs caved and I could not stand. A physical therapist came in to work with me, but could not get me to stand, no matter how many times he tried. I was in the hospital for about 6-8 weeks, so weak that aids had to lift me in a sheet and place me in a chair, but I was only able to sit for a few minutes before collapsing. I was finally discharged to a rehab facility in Cleveland where they would work to get me walking again. Slowly, I was able to stand and walk a little, then a little more. It was very hard work and very exhausting. Fatigue and exhaustion like I had never known. When I could finally walk around the facility and go up several stairs, I was discharged. The plane ride home was sheer torture. Sitting was torture. Still no chest pain, but tons of upper back and rib pain, nausea and anxiety. The car ride from the airport to our home was as bad as the plane ride. I was so exhausted that my husband had to support me to get me into the house. I got as far as the dining room and collapsed at the table. Given my terrible condition, you can see how important it was that we took the time to prepare out house for my recovery. My husband's planning really paid off. Once I managed to get upstairs to our bedroom I did not have the energy to come back down. I needed my husband's assistance to get out of bed and get to the bathroom. I was not able to take a shower without my husband's help - and that goodness for that shower chair. My cardiologist told me, that given that given the fact that I had two surgeries in two days, it would take me one to two years to recover. It took all of that and much more. I believe they did some kind of nerve block before closing my chest during surgery, so I really hadn't had much pain until I got home. Then I developed chest pain, but it wasn't bad. It was the back pain that was terrible. No one told me about that. But when you consider how a sternotomy is done, it makes sense. The terrible fatigue, shortness of breath, exhaustion, anxiety and insomnia were so bad that I just can't describe it. Nurses and physical therapists came to my home to help me, but it was still slow going. It was now time to return to my local cardiologist for a follow up echo. More bad news. The echo showed severe mitral valve leaking. So, I had gone through two heart surgeries only to end up in worse condition than before my surgery. This was a person's worse nightmare. Anxiety attacks, panic attacks and wishing I had just died. Awful. Worse than awful. My Cleveland Clinic doctors reviewed the echo and agreed that the leaking was bad. Very bad. They suspected that the heart attack had cause the heart to enlarge and change shape, causing the newly repaired valve to leak again. I was told they would watch it carefully, but suspected that I would need another heart surgery to replace the valve. But that could not be done for a lest a year because of my fragile condition. In the meantime, I was dealing with horribly abnormal blood work, including severe anemia and my labs needed to be monitored regularly. I was back to the Cleveland Clinic for a follow-up in six months. Another grueling plane ride. Again, the valve leaking was severe. I returned to Cleveland every six months. During one appointment, I saw my cardiologist come running out into the patient area towards me, waving some papers. I didn't want to know. I expected the worse. But good news. The leaking valve had improved from severe to moderate. My doctor explained that the heart often re-shapes after a heart attack, and he had been hoping that when that happened it would have a good result. And it did. Thank God. Eventually, the leaking went from severe to only a 2 and my doctor ruled out another heart surgery at that point. But I was left with moderate heart damage, an enlarged heart, a heart block (irregularity in the heart's electrical system) and a low ejection fraction of only 38 and a post-traumatic stress disorder. My recovery took about 3-4 years. My emotional recovery (which is still incomplete) took about 5 years. I have suffered from pretty serious depression and anxiety, but thankfully, the anxiety is mostly under control - until some little thing goes wrong to trigger it. So that's my story. And THIS is why I would caution people to choose their hospital wisely. If I had not been at the Cleveland Clinic, I am pretty sure I would not have survived. While I am grateful to be here (I guess), I often still think it would have been easier to have died. At least then I would not have to live with this chronic worry and the knowledge that my life expectancy has been shortened. Plan ahead. Plan for everything. Hope for the best and go to the very best heart hospital. Best wishes for all you to have an uncomplicated surgery and a complete and speedy recovery.

PART 1: At the request of several people, I am going to post the full story of my heart surgery experience. It is not pleasant. If you don't want to read about complications and problems, please don't read it. It is not my intention to frighten anyone, but to point out what happened to me and the arduous recovery I faced. Since it is long, I may post it in several parts and will be glad to answer any questions you may have. I was diagnosed with a slight leaking of my mitral valve when I was around 30 years old. This was followed on a regular basis and never seemed to get any worse. After menopause, I began feeling very exhausted and occasionally short of breath, but I attributed it to menopause. We later moved to the mountains of central Mexico and were living at an altitude of about 6,000 feet. During that time, my exhaustion progressed and the shortness of breath increased. I saw a cardiologist in Guadalajara who said my valve was now leaking at a 3+. I was shocked! I truly believed this was never going to get any worse. He said I didn't need to do anything about it then, but needed to be followed closely. After a few months, I felt so bad that I moved back to the U.S. (Maine) about a year before my husband could join me (as he had to stay to sell our home in Mexico.) By the time my husband arrived back in the U.S. I was feeling worse and worse. One day I went to my internist complaining about my symptoms. I also had fibromyalgia, so I assumed that many of my symptoms were cause by that. When he listened to my heart, he jumped back in horror, saying that my murmur was "terrible" and needed immediate attention. I had the usual echo done which also showed that the valve was leaking very badly - severely. A trip to a cardiologist confirmed that my valve was not in good shape and that surgery was needed very soon. It was also suspected that it was the anterior leaflet of the mitral valve (around the back of the heart

My initial heart surgery was done robotically. I was told the robotic arms would be inserted through the side of my chest. When I woke up, I realized the arms had been inserted along the outside of my right breast, causing a great deal of of lumpy scar tissue. The surgeon assured me the lumpiness would go away in time. And it has, but it has taken many years and there is still some lumpiness present. The real issue occurred later when my mammograms came back with worrisome areas along the area of the scar tissue. While my breast surgeon could see the scars on my breast from the heart surgery, she was still concerned, so I had to undergo various additional tests, repeated mammograms and even a biopsy, just to be sure. Thankfully, everything was normal and yes, it was determined that the lumpiness was scar tissue and some nodes were a little enlarged, which she believed to be the result of the breast tissue being disturbed by the robotic surgery. I think it's important for surgeons to realize that women do not want to have scary breast/mammogram issues , especically not after going through the emotional trauma of heart surgery. So I am not sure why they would choose to go through the side of a woman's breast. It's not that this has been very painful, but it's been one more thing to worry about every time I get a mammogram, so I thought this would be worth mentioning. To avoid this experience, I would encourage women to planning on having robotic surgery to ask if the surgeon can avoid entering the chest through the breast.