The Heart Failure Diaries 3 (Doctors score a late goal!)

Since my last post about Mum and her failing heart we have had the Echo results and the review with the consultant. Her Echo showed her heart is working at a quarter of its function at best, sometimes less. The day before the appointment Mum had one of her worst days, breathless at rest. We went to the appointment with the wheelchair whereas the month before she had walked in to the Department. I was expecting the consultant to confirm the inevitable.

He sat in silence looking at the notes for a long time then began to ask questions. ”how are you managing at home?” “Fine” mum replied. ”No you’re not!” I interjected, explaining that mum needs help with everything except personal care. I said we understood what was going on, and wanted to prepare. The consultant wouldn’t acknowledge or admit that this was the end game, sharing miracle stories of patients who have long outlived their prognosis and stating he would ”throw the kitchen sink at this”. Once he remembered I was medical he conceded that Mum’s low blood pressure was the limiting factor for further intervention. We left with drug changes planned, an early follow up, a suggestion we discuss all of it with the GP and confusion. ”I guess he’s not going to tell you there’s nothing he can do at the first meeting in 3 years” I said to mum on the way home, “but the conversation has started. Doctors like to fix people, they don’t like failing”.
I emailed our wonderful GP and he rang me later that week. He too seemed reluctant to accept how poorly mum is but explained the new drug rationale and said he would talk to mum about end of life care and her wishes once we saw how she was with the new drug. She’s very clear she doesn’t want to go to hospital at any point so I want to be sure we can have oxygen at home when we need it.

As no one else seems to think we are nearing the end, thoughts of death and loss have receded and life goes on. I’ve been more focused at work, busy with the horse and seeing Mum more than I would have. I’ve realised that you just can’t plan for death. Neither people nor services work like that. It will catch us out and shock us however prepared we try to be. Best to forget about it until such time as you can’t or it paralyses you too soon.

Mum started the new meds and to her and my surprise they have really helped. She’s not as tired or breathless. She can go out on her scooter and not need to rest all day afterwards. It’s buying her some time and giving her some energy too. We are both surprised and delighted! It’s as if death was looming in front of her and she’s kicked it into the long grass again, off the horizon. When it next confronts her no one will believe me! She’s fairly sure she won’t be here for a grandson’s wedding next September but who knows? Perhaps the doctors are right to be optimistic? I was frustrated by his reluctance to discuss the end or give us predictions, but I really thought that medical options had been exhausted. Who knew he had an ace up his sleeve? Of course her heart is still knackered but more medication tweaks are on there way and given where we were just a month ago this extra time is a precious gift.