mustlovepoodles
Member
DH has stage 4 lung disease (fibrosis) and he has been disabled for 10 years. His lungs have been really bad for years, but he had stabilized for about a year and wasn't getting any worse. He has had mitral valve prolapse for many years, but it has never been a problem. Still, he is often out of breath and fatigued which is normal for his condition. But starting at Christmas I observed that he seemed more fatigued than usual. He began having periodic "events" where he would get extremely short of breath and is oxygen would drop into the 70s briefly. He always recovered in a few minutes and his pulmonologist just wrote it off to his lung condition. A CT scan didn't reveal any changes. DHs lung function has been in the 30s for 2 or more years, but he has adjusted to it and he has been able to do the laundry, go grocery shopping, meet his friends for lunch, and go camping.
Well, we towed the camper to Savannah in March, about 500 miles. It was pretty rugged because we were having a lot of sway. We had DHs motorcycle in the truck bed and when we went to get it down the ramp, DH became extremely short of breath, gray and sweaty. I thought he was going to pass out, truly. It passed in a few minutes and he refused to allow me to call 911, so we just went back to the camper and let him lie down with his oxygen. Clearly, something was not right.
When we finally got back home, he had a routine follow-up with his infectious disease doctor--he has been treated two entrenched lung infections for over year ( Nocardia and MAC). While he was there I spoke up about the episodes. The doctor listened to DHs heart for a long time and said he thought his heart murmur sounded louder than usual. He ordered an echo.
Well, holy cow! The echo revealed severe mitral regurgitation. We went to see a heart surgeon, who was very kind but he had almost nothing but bad news for us. DH is at very high risk for complications, including not being able to get off the vent in a timely manner. Also, he wants DHs lungs to be clear of infection and he has to be off the maintenance Prednisone. Heart surgeon sent us home to think everything over. In the meantime, we submitted all DHs records to Cleveland Clinic. They called back in a few days and said they would not touch the valve unless he would submit to a lung transplant. WTH? Back to the home pulmonologist. After talking with him, he admitted that DH probably would be a candidate for the lung transplant. DH was dumb-founded. He doesn't feel THAT sick and it seems like the lung transplant might further reduce his quality of life (it has a 50% mortality rate at 3 years.) DH decided to see yet another cardiologist, who did recommend the valve replacement, despite acknowledging DHs high risk. So here we are.
At this point, DH is symptomatic most of the time. His lung function is 23%. He has made sure his Will is updated, the life insurance is updated, his pension is in place and I know how to get into the bank accounts. Last Thursday, DH had a TEE, which revealed the valve is worse than ever. They cannot afford to wait until DH is off the infection meds--he needs surgery NOW. The cardiologist wanted to keep him in the hospital this weekend but DH refused. I've tried to keep him quiet, but he has insisted on hauling several loads of laundry up from the basement and doing some light yardwork :mad2: They plan to admit him Wed for cardiac cath and do OHS Thurs for the valve replacement. He will have an organic valve, as he cannot take the long-term anti-coagulants due to the risk of bleeding in his lungs.
Needless to say, this has been a tense weekend. DH is very anxious (with good reason.) Neither of us is sleeping well and we are both rather agitated--my kitchen has been cleaned top to bottom, including the entire fridge and cabinets rearranged. Our adult kids will be coming home on Wed and DHs only sibling will be coming up from Florida on Tues. DHs surgeon has told us to expect a long, difficult recovery. I guess we'll roll the dice and hope for the best.
If you're still with me, thanks for letting me vent. I think this is going to be a long week.
Well, we towed the camper to Savannah in March, about 500 miles. It was pretty rugged because we were having a lot of sway. We had DHs motorcycle in the truck bed and when we went to get it down the ramp, DH became extremely short of breath, gray and sweaty. I thought he was going to pass out, truly. It passed in a few minutes and he refused to allow me to call 911, so we just went back to the camper and let him lie down with his oxygen. Clearly, something was not right.
When we finally got back home, he had a routine follow-up with his infectious disease doctor--he has been treated two entrenched lung infections for over year ( Nocardia and MAC). While he was there I spoke up about the episodes. The doctor listened to DHs heart for a long time and said he thought his heart murmur sounded louder than usual. He ordered an echo.
Well, holy cow! The echo revealed severe mitral regurgitation. We went to see a heart surgeon, who was very kind but he had almost nothing but bad news for us. DH is at very high risk for complications, including not being able to get off the vent in a timely manner. Also, he wants DHs lungs to be clear of infection and he has to be off the maintenance Prednisone. Heart surgeon sent us home to think everything over. In the meantime, we submitted all DHs records to Cleveland Clinic. They called back in a few days and said they would not touch the valve unless he would submit to a lung transplant. WTH? Back to the home pulmonologist. After talking with him, he admitted that DH probably would be a candidate for the lung transplant. DH was dumb-founded. He doesn't feel THAT sick and it seems like the lung transplant might further reduce his quality of life (it has a 50% mortality rate at 3 years.) DH decided to see yet another cardiologist, who did recommend the valve replacement, despite acknowledging DHs high risk. So here we are.
At this point, DH is symptomatic most of the time. His lung function is 23%. He has made sure his Will is updated, the life insurance is updated, his pension is in place and I know how to get into the bank accounts. Last Thursday, DH had a TEE, which revealed the valve is worse than ever. They cannot afford to wait until DH is off the infection meds--he needs surgery NOW. The cardiologist wanted to keep him in the hospital this weekend but DH refused. I've tried to keep him quiet, but he has insisted on hauling several loads of laundry up from the basement and doing some light yardwork :mad2: They plan to admit him Wed for cardiac cath and do OHS Thurs for the valve replacement. He will have an organic valve, as he cannot take the long-term anti-coagulants due to the risk of bleeding in his lungs.
Needless to say, this has been a tense weekend. DH is very anxious (with good reason.) Neither of us is sleeping well and we are both rather agitated--my kitchen has been cleaned top to bottom, including the entire fridge and cabinets rearranged. Our adult kids will be coming home on Wed and DHs only sibling will be coming up from Florida on Tues. DHs surgeon has told us to expect a long, difficult recovery. I guess we'll roll the dice and hope for the best.
If you're still with me, thanks for letting me vent. I think this is going to be a long week.
