Tuesday, January 19, 2016

On this day 9 years ago...

On 19 Jan 2007 I stepped foot into Milpark hospital for the first time. The night before I was playing Ten Pin with friends in PE, and the following morning my dad and I jumped on a plane to JHB to meet the transplant Dr. We were going to fly back later the same day. I was referred to Dr Williams by my PE pulmonologist after researching transplant on the internet, asking about it, and being told that if I were interested I would need to go see this Dr. I expected a "meet and greet" kind of appointment, wanted him to know about me, and expected a "Well done for getting this far, come back in a year's time and we can monitor you annually"....

How very very different things turned out... on the plane I asked for oxygen mid-air as I was struggling to breathe. I had to take it off as the plane was landing. While walking in the airport building I felt like I was going to pass out. My dad called security and the guys from the airport came with a wheelchair and oxygen. They took me to the airport clinic, and my O2 sats were very low (can't remember how low). The were reluctant to let me go, but we explained that I'm on my way to Milpark. So into the rental car we got and off to the hospital.

When we got to the waiting room the oxygen there wasn't working, so I waited in the Dr next door's waiting room. By this time I was running a bit of a fever (as I often randomly did after some excitement). When we finally saw the Dr things went very different than expected. He said I was a "late referral and should have been on the waiting list about a year ago". I think my lung function was 26%. He also said I was sick due to having a fever, and I tried to explain this often happens and is "normal" for me, but it didn't work. He told me girls with CF my age (I was 22 at the time) deteriorate quickly. He wanted to admit me immediately and do the work-up for transplant. I started crying and was taken to the Acute Care Unit.

ACU was a pretty horrible experience. It was a ward filled with old people, I was the youngest person by at least 40 years. There was no privacy, and the nurses wouldn't let me walk 5 metres to the toilet, they wanted me to use a bedpan. I still managed to sneak away to the toilet and they would freak out about how low my sats dropped. They did a lot of tests, which were fine, but I lost it when they messed up my drip and it took 9 attempts to re-drip me. All in all it was a horrible experience, but I got the Dr to discharge on the Monday after 3 nights and promised to continue with the IV's once back in PE. I didn't, as I was fine again once back at the coast. The flight back was also full of drama.... I was in a wheelchair from the start, and was to be taken into the plane via the food truck lift. There were moments of panic where we though that we had missed the plane, but in the end we got on just in time.

We went back in April... this time driving with an oxygen cylinder, which worked much better. After that I didn't come to JHB again, it was too strenuous so Dr agreed that we could just send him updates... Anyways... the point I wanted to make was just that it's been 9 years since Milpark has been in my life,  and despite the bad start I only have good memories of it since my transplant. Hopefully it will stay that way!

1 comment:

Sherry Boyle said...

Wow, what a story! But wonderful that the transplant went so well! Your parents must be amazing people -- like you!!