Thanks for asking, the appointment was good. It is a nephrology clinic in Toronto General Hospital that includes the doctor, nurse, dietician, pharmacist and research wing. Greg has joined the research observation study in the hope of helping those in the future who are diagnosed with FSGS. It follows progression and looks at possible dna links between participants.
Swelling has gone waaayyyy down since he has started the low sodium diet.
And yes we are feeling a bit less overwhelmed now - it really helps to talk to others who are going through the same thing. We have talked a lot about the holiday season and staying in a good schedule with rest, sleeping when he can and eating well in spite of all the treats around!
Some nights he is only waking up once before early morning and it's a small victory! Some nights are still 4-5 times a night but then he is sure to have a nap at some point during the day. Getting less frustrated with these life changes has been key - keeping calm and carrying on!
He is getting blood work done every week now to monitor cyclosporine levels as they are keeping it really high for a few months. Trying not to focus on the weekly numbers.
Thanks for the tips and for checking in, it is very appreciated.
All the best to you and your family over this holiday season.
Friday is revision #1 (and hopefully the last). On my 5th visit to hemo they finally figured out how to freeze my arm and insert IV's for hemo WITHOUT PAIN. Woo Hoo. I'd spent the start of the first four sessions in tears. Crying sucks.