What to say next

It's hard to know what to say when things you have imagined happening in the future seem to be hurtling towards you too fast and too soon, and there isn't a damn thing you can do to stop them.  Events develop under your nose and you just don't put all the pieces together to see the bigger picture until someone who is further back points out what you don't want to see.  They do it kindly, and with the best intentions, but it is still like a smack in the face.  It hurts.

Yesterday, the sleep clinic nurse was sufficiently concerned when I mentioned some of the FH's most recent symptoms, that she contacted the transplant clinic and we were sent along there to be seen by a doctor.  Although the two clinics are not that far apart, the FH almost collapsed on the mooch along the way, and I had to call for help to hold him upright - a nearby worker helped me to hold him whilst another fetched a wheelchair.  He was shocked at that episode and it put the wind up him before we even reached the transplant clinic.

As we weren't scheduled for an appointment yesterday, we had to wait some time to see the cardiologist - a lovely man that the FH has seen a lot of over the past 14 years that we have been in this area.  When we did see him eventually, it was after a caring charge nurse had taken down some details, and done the usual BP and weight checks.  Finally I was able to wheel him in to be seen.

The levels of fluid in the FH's body are rising, and his heart is under increasing strain.  The doctor described it as a stiff, thick balloon - hard to inflate and not very flexible any more, so it is not pumping the blood around his body very efficiently.  It is weakening, and at an increasing rate of decline, it seems.

The doctor was kind, and explained that there are still a few other diuretics that can help with the fluid, but that they will exacerbate the gout and probably increase the level of pain that he is experiencing.  He has largely had the gout at a manageable level these past few months, and has always been able to walk around lately.  His weight is increasing, but we are aware that that is fluid retention.  The doctor, with the best will in the world, is running out of options for the FH, it seems.

The FH was told yesterday that he should begin to think about how he wants to be cared for at the end.

His words were that it is not "imminent" but that we should discuss it and investigate the options, that he will write to the GP and ask him to talk with us about support available.  Thinking about this, there are a lot of questions arising in our minds, and so we plan to speak with the nurse practitioner at the surgery on Monday when we go for the next INR check.

Thank you for all your support and prayers - it means the world to me in all of this.