Progress

So quite a few years back now I was diagnosed with bilateral renal AVMs
(Multiple AVMs on both kidneys) at the Austin Hospital in Melbourne Victoria by a brilliant surgeon.

This amazing surgeon was the person whom gave my family a name for the ‘condition’ so many other doctors didn’t have answers or explanations for which then put me in the ‘to hard basket’.

My AVMs haven’t been an issue for over 3 years now, that was until June 2016, when it all started again.

I now have a great local specialist that has been wonderful. I am so grateful I now have access to treatment that can be done locally by someone so knowledgeable. This being said, after being told there are no other treatment options and finding out my original ‘brilliant surgeon’ had returned to Australia, could anyone blame me seeking his opinion once again?
Honestly I don’t think anyone understood how excited I was to see him again.

Today I made my way to his rooms in Melbourne hopeful he would have some other options for me… with my amazing support crew by my side. (my amazing mother whom has been by my side every step of the way & my beautiful partner whom is rather new to the world of AVMs)

Unfortunately after a long discussion I left his office a little teary. There are no other treatment options for my AVMs which means each time they come back I require multiple procedures to get them ‘under control’.

As previously discussed so many years ago, my AVMs are apparently really rare. Even more so because they effect both kidneys so a nephrectomy
(which is considered for some) is definitely not an option for me.

I am so grateful for what I have & what I don’t have. ( I could have been given a much worse diagnosis)
I guess I was hoping today would be the day I would find an ‘easier’ or ‘less invasive’ treatment option. Life isn’t meant to be easy, Im okay with that but its okay to be optimistic about it getting easier right?

If there happens to be anyone out there effected by renal AVMs or knows of someone that is, I would love to hear from you.

On a side note: My doctor was quite impressed when I told him of this amazing support network!

I hope you are all well!

Kirrilee

I’m with you… I think it’s important to be optimistic about life.

There are already a number of entries for renal avms. If you use the grey search magnifying glass, you might see a list like this one which might help you get connected with some of the right people. (Actually several of those are your own posts!) Sorry, I thought it might help… :frowning:

Richard