Tim Stewart
01-11-2003, 07:29 AM
In April 2002, my wife Lynn (31 years old) was diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) during a TEE to evaluate a heart murmur. Lynn often had chest pain/tightness, shortness of breath, dizziness and her vision would blacken upon standing from a bent position. We immediately sought out a specialist in the area of the disease and with Lisa's help we were led to Dr. Harry Lever at Cleveland Clinic.
When we met with Dr. Lever in June 2002 he increased Lynn's beta blocker, Toprol XL, to be 200mg per day (a pretty heavy dose). After 30 days Lynn noticed some symptoms had improved but not as many as her or the doctor would have preferred. It was decided that Lynn should have a septal myectomy to reduce the wall thickness. The myectomy was performed in August 2002 and should provide a long term relief of many symptoms. However, there were some complications.
On 10/20/2003, I took my wife to the ER about 1:00 am as she was complaining of side pains and pain while inhaling. The local ER did a number of test and compared there results with the records faxed down from Cleveland Clinic and initially found nothing wrong. Then a Cat Scan indicated a severe Pericardial Effusion (build up of fluid around the heart). She was immediately admitted and scheduled for immediate surgery to relieve the fluid - a procedure the local surgeon called a Pericardial Window. This required a new incision to be made and a tube inserted to drain the fluid. Dr. Smediera (from Cleveland Clinic) was on call that night and was willing to care-flight her up to Cleveland from Dayton but later realized that it may be too risky so the decision was made to do the procedure in Dayton. The procedure took about 25 minutes under general anesthetic. About 40 oz was quickly removed and the tube remained in place for a few days to drain the remaining fluid. She was awake and alert about 45 minutes after the procedure and stayed in the hospital a few days after before being released.
In December during a routine visit with Dr. Lever, an echo showed Mitral Valve regurgitation - something that was not present after the myectomy. We will return to Cleveland in February for another evaluation. At that time it is entirely possible that another surgery will be scheduled to repair the mitral valve.
As her husband, I try to remain as supportive as I can. Like most people with HCM, Lynn has good days and bad days. For a while, the "good days" out numbered the bad. However, that is no longer the case. It can get frustrating for me at times when I come home from work and nothing has been done around the house (i.e. laundry, dishes, etc). But then I see that it was a "bad day" and she just did not have enough energy to do much more than get dressed that day. The next day, conversely, she might get up and clean the house and go to the grocery all before lunch. I *love* those days. However, she will usually be tired for the next day or so afterwards.
Does anyone else live with a loved one who has this condition? Does this situation sound familiar to anyone? While I try to remain as supportive as possible, sometimes I too need reassurance that I am doing the best that I can and that things are only going to get better.
Thanks in advance for your comments.
When we met with Dr. Lever in June 2002 he increased Lynn's beta blocker, Toprol XL, to be 200mg per day (a pretty heavy dose). After 30 days Lynn noticed some symptoms had improved but not as many as her or the doctor would have preferred. It was decided that Lynn should have a septal myectomy to reduce the wall thickness. The myectomy was performed in August 2002 and should provide a long term relief of many symptoms. However, there were some complications.
On 10/20/2003, I took my wife to the ER about 1:00 am as she was complaining of side pains and pain while inhaling. The local ER did a number of test and compared there results with the records faxed down from Cleveland Clinic and initially found nothing wrong. Then a Cat Scan indicated a severe Pericardial Effusion (build up of fluid around the heart). She was immediately admitted and scheduled for immediate surgery to relieve the fluid - a procedure the local surgeon called a Pericardial Window. This required a new incision to be made and a tube inserted to drain the fluid. Dr. Smediera (from Cleveland Clinic) was on call that night and was willing to care-flight her up to Cleveland from Dayton but later realized that it may be too risky so the decision was made to do the procedure in Dayton. The procedure took about 25 minutes under general anesthetic. About 40 oz was quickly removed and the tube remained in place for a few days to drain the remaining fluid. She was awake and alert about 45 minutes after the procedure and stayed in the hospital a few days after before being released.
In December during a routine visit with Dr. Lever, an echo showed Mitral Valve regurgitation - something that was not present after the myectomy. We will return to Cleveland in February for another evaluation. At that time it is entirely possible that another surgery will be scheduled to repair the mitral valve.
As her husband, I try to remain as supportive as I can. Like most people with HCM, Lynn has good days and bad days. For a while, the "good days" out numbered the bad. However, that is no longer the case. It can get frustrating for me at times when I come home from work and nothing has been done around the house (i.e. laundry, dishes, etc). But then I see that it was a "bad day" and she just did not have enough energy to do much more than get dressed that day. The next day, conversely, she might get up and clean the house and go to the grocery all before lunch. I *love* those days. However, she will usually be tired for the next day or so afterwards.
Does anyone else live with a loved one who has this condition? Does this situation sound familiar to anyone? While I try to remain as supportive as possible, sometimes I too need reassurance that I am doing the best that I can and that things are only going to get better.
Thanks in advance for your comments.