Got bad news today re: DH
This is going to be long, so if you're not interested you can move on. I don't have any real life friends that I can talk to. I don't want to post it on Facebook either, because it's a pretty sensitive thing right now. DH and I are pretty upset.
As you may know, DH has severe lung disease (stage 4 sarcoidosis) and controlled congestive heart failure. He has developed two serious infections in his lungs, Mycobacterium Avium Complex (MAC), which is like TB but not contagious between people, and Nocardia, a very serious infection that is hard to treat. He has been steadily declining since January, when he started treatment for the Nocardia. Presently, there is no improvement. In fact, he's going backwards.
DH has been having episodes of extreme shortness of breath and fatigue. It happens whenever he does any sort of exertion, like carrying laundry upstairs or carrying baskets of food or clothing to the camper. I thought I was going to have to call 911 on a recent camping trip when he & I took the motorcycle off the back of the truck--this only entails backing the bike down the ramp. It scared the starch out of me! His breathing recovered within 10 min, but he was completely wiped out. The camping trip was much more difficult than it ever has been and at this point we have decided to take a break from towing. DH has no stamina whatsoever.
At this point, DH is only able to ride the motorcycle sporadically, when he's having a real good day. He's having a lot of not good days and sometimes he naps 2-3 times or will nap from 10am-4pm, get up for dinner and then go back to bed at 9pm. He's had a recent CT scan and an echocardiogram.
Today was Doctor Day, almost 4 hours total. We saw the pulmonologist this a.m. and found out DHs lung function is only 23%, down 15 points from Dec. The last time it was this low, he was in septic shock. Then we went to the cardiologist this afternoon. DH has had mild-moderate mitral valve prolapse. The echo revealed that it is now quite severe and needs heart surgery. The big question is, can he even survive it? If he survives the surgery, can they get him off the vent? It is a very serious surgery with lots of risks, even for a relatively healthy person. DHs health is very complicated and poor.
We have an appt next week with a heart surgeon. We will also get a second opinion. The pulmonologist will need to confer with the surgeon(s) to see what can be done. If they do not believe he can undergo surgery, then there's nothing much they can do. He's already on the drugs that are used for severe valve disease. He already has congestive heart failure and that will only worsen without surgery. The cardiologist was very kind, but he is not hopeful.
We don't need anything. Nothing much in our daily lives will change. Obviously, DH and I are having some serious, ongoing conversations. At this moment our June 6 Alaska cruise is still on and hopefully, if surgery is approved, perhaps it can be delayed a few months. If not, we may need to cancel that. We have trip insurance, as always.
Anyway...DH told DS27 today. He's upset, of course. DS is currently mired in a severe depression, for which he will not seek treatment. He's drinking a lot, too. We'll probably see DD20 this weekend and tell her in person. I hate to burden her. She's working full-time and going to school part-time. But I don't think this can wait a month until the semester ends. I feel like our lives are upended at the moment but I'm sure we will get used to a new normal. Just keep us on your prayer lists, please. That's really all we need.
__________________
As you may know, DH has severe lung disease (stage 4 sarcoidosis) and controlled congestive heart failure. He has developed two serious infections in his lungs, Mycobacterium Avium Complex (MAC), which is like TB but not contagious between people, and Nocardia, a very serious infection that is hard to treat. He has been steadily declining since January, when he started treatment for the Nocardia. Presently, there is no improvement. In fact, he's going backwards.
DH has been having episodes of extreme shortness of breath and fatigue. It happens whenever he does any sort of exertion, like carrying laundry upstairs or carrying baskets of food or clothing to the camper. I thought I was going to have to call 911 on a recent camping trip when he & I took the motorcycle off the back of the truck--this only entails backing the bike down the ramp. It scared the starch out of me! His breathing recovered within 10 min, but he was completely wiped out. The camping trip was much more difficult than it ever has been and at this point we have decided to take a break from towing. DH has no stamina whatsoever.
At this point, DH is only able to ride the motorcycle sporadically, when he's having a real good day. He's having a lot of not good days and sometimes he naps 2-3 times or will nap from 10am-4pm, get up for dinner and then go back to bed at 9pm. He's had a recent CT scan and an echocardiogram.
Today was Doctor Day, almost 4 hours total. We saw the pulmonologist this a.m. and found out DHs lung function is only 23%, down 15 points from Dec. The last time it was this low, he was in septic shock. Then we went to the cardiologist this afternoon. DH has had mild-moderate mitral valve prolapse. The echo revealed that it is now quite severe and needs heart surgery. The big question is, can he even survive it? If he survives the surgery, can they get him off the vent? It is a very serious surgery with lots of risks, even for a relatively healthy person. DHs health is very complicated and poor.
We have an appt next week with a heart surgeon. We will also get a second opinion. The pulmonologist will need to confer with the surgeon(s) to see what can be done. If they do not believe he can undergo surgery, then there's nothing much they can do. He's already on the drugs that are used for severe valve disease. He already has congestive heart failure and that will only worsen without surgery. The cardiologist was very kind, but he is not hopeful.
We don't need anything. Nothing much in our daily lives will change. Obviously, DH and I are having some serious, ongoing conversations. At this moment our June 6 Alaska cruise is still on and hopefully, if surgery is approved, perhaps it can be delayed a few months. If not, we may need to cancel that. We have trip insurance, as always.
Anyway...DH told DS27 today. He's upset, of course. DS is currently mired in a severe depression, for which he will not seek treatment. He's drinking a lot, too. We'll probably see DD20 this weekend and tell her in person. I hate to burden her. She's working full-time and going to school part-time. But I don't think this can wait a month until the semester ends. I feel like our lives are upended at the moment but I'm sure we will get used to a new normal. Just keep us on your prayer lists, please. That's really all we need.
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