Skip to main content

Another week over

Between the two of us my partner and i often laugh at how life will be when we are old and senile with him not being able to see and me being powered by a battery we make quite the pair !

This week just marked another stressful week of the calendar with being told Aaron's transplant showing early signs of rejection.

Thankfully we were seen by a cornea specialist who found a broken stitch that was causing all the irritation and an infection. A quick day procedure to remove the stitch. Phew

I also got a call from the cardiovascular centre to say I'm receiving the new updated home monitor. I will now be able to bluetooth my pacemaker info to my phone which gets downloaded by the clinic every night. I've now reached robot update 100% with bluetooth, download features and constant monitoring.

Last Saturday i spoke at the Women & Children's for HeartKids Education day, helping parents to transition their teenage heartkids into the adult health care system.  Personally that was a challenging time for me learning to take responsibility for my own health so i was glad i could pass some help on.

I also held my first movie fundraiser raising a a fantastic $750 bringing my total over $2,000 so a massive thank you to all who came along, i hope you had a great night!

                           Deadpool 2 Movie Fundraiser 


Don't forget to keep an eye out on my page have a few events up my sleeve 😀

Comments

Post a Comment

Popular posts from this blog

I’m in ICU

Thank you all for the well wishes I have been receiving from literally all around the world. I’m currently in ICU, awake and able to take fluids, not up for eating anything. The surgery went well but there was some complications as electrical conductivity was damaged when removing the old valve and ring that was already in there. This means I’ll be getting a pacemaker and that will be fitted either tomorrow or Sunday.  I can hear the valve ticking which is just a very faint tinging noise.  I’m in good spirits and not too much pain just discomfort from all the tubes.  Waiting before surgery  After surgery on ICU
Post a Comment
Read more

Battery Operated

Alright so i guess I'm practically a terminator, invincible and something of the future ! I have not only my mechanical valve and pacemaker but also two wires anchored in my heart at 59cm and 69cm long, my rib cage is wired shut and i also send and receive data wirelessly, 100% battery operated, and i have two serial numbers. Superhero power is being able to ricochet bullets from the chest My weakness is magnets. But in all seriousness  I am now 100% dependant on my pacemaker due to what is called Complete Heart block and have 8 years battery left which will make me 34 at next robot update. Heart Block is the most severe type of heart block and is often caused by an existing condition, CHD in my case and complications during my last surgery stopped the electrical conductivity. Originally Dr's were hoping my heart would find its own rhythm but that wasn't to be the case and now i am completely battery operated.  My Cardiologist saw me about two weeks...
Post a Comment
Read more

X-ray

Just got my chest X-ray back In the top right you can see the pacemaker  The cross-cross wires are were they sewn the sternum up and the small silver ring to the right is my new valve.  My pacemaker is doing 91% of the work so I am literally a battery powered robot- pretty incredible what they can do 
Post a Comment
Read more

Here we go again

This last week has been full of hospital appointments (and a shit load of waiting around) for my 6 month follow up reviews. I got a mixed bag of results, Good news my pacemaker is working wonders, completely pacemaker dependent however at 100% with 8 years battery life left. My bloods are not bad, last INR was 2.3 so only slightly under range I've been given the clear to have an entire month of blood tests which is fantastic for me not having to stab myself every Friday. My new mechanical valve is working brilliant which is fantastic, BUT here's the kicker --- I've developed scar tissue below my aortic valve which is now restricting blood flow out of my heart and to the rest of my body. The only way to fix this is open heart surgery number 4 ! I'm pretty bummed, last year i made some massive life changing decisions and having a mechanical valve came at a cost of not being able to have my own children, warfarin ( blood thinners) daily meds and frequent blood te...
1 comment
Read more