I never thought this would be so hard. I was married to David for over half of his life. When we married I asked for 5 years because I knew how sick he was. At the 5 year mark, he had his first double lung transplant. After 3 years, he had a second (due to rejection caused by my giving him the flu!). About 12 years ago his kidneys failed due to the anti-rejection drugs and our best man gave him a kidney. We have a 16 year old who kept him going all these years. I'm so grateful he could coach her softball, enjoy her talents and watch her grow up. I'm grateful that our daughter got to know her Dad but I just wish we all had more time together. Last October we went to the Cleveland Clinic to get him listed for a third double lung transplant (did I mention he was a fighter?!?). We were scheduled to meet with the surgeon in January when the big blizzard hit and canceled our flight and closed the roads. He told me that night that he wasn't going to make it. I never, ever let him give up hope (because I just couldn't give up). We rescheduled our meeting for February and on the day of our appointment, he died. His pancreas failed, blood clots, pnemonia etc. He just couldn't get off the vent and I had to make the dreadful decision. I am going through the motions but just feel like I'm "getting through" the days and events that come my way. I know it takes time but I can't imagine life without my best friend. I miss talking to him so much. I am hoping that someone that really knows the trials and tribulations of CF can help me understand this process. Thanks.
Oh Christine -- my husband Victor is just beginning that long slide down and I am dreading it so much. He's never had a transplant and he's made it to age 63 (soon 64) but his body is just wearing out from the overcompensation for so many years.
He's always so optimistic, telling me I could die first, but we both know that's unlikely. Now, though, he has finally gone on oxygen at nights and when he walks more than a few steps (outside and to the parking lot at work). And yes, he is still working but told me that he might have to go to a four day work week in the near future.
I know he can go down so fast but he has always popped back out of the slump. This time is different. His doctor wants to talk transplant but he won't even consider it. He's a physician and believes that his longevity is due to his extremely strong immune system which would reject the lungs even more forcefully than others. He says he'd rather deal with the "devil he knows instead of the devil he doesn't know." With his past heart issues and other various ailments he might be right.
I woke up with a sore throat and moved into the other bedroom. I don't dare give him a virus as happened 18 months ago and he almost died. I just don't know what's ahead. None of us do, I suppose. But as a CF spouse, you know more than most. I am so sorry about your husband and best friend. Like you, I went into this with my eyes open 25 years ago but I am still greedy for more time. Would love to stay in touch. If I can be of any help, please let me know. I'm in NC.