Tuesday, March 19, 2013

Another Day, Another Doctor's Appointment

Yesterday I had to wake up way to early and head to Edmonton for a visit with the transplant doctors. Three months is a long time to go without seeing them. My alarm went off I thought it was the transplant doctor calling to say he had lungs for me. But no, I woke up and realized it was just my enemy telling me that it was time for me to get up and get ready to go. 

This thing is the devil!

I hopped out of bed, threw some makeup on, brushed my hair, and came upstairs. After my morning physio, I grabbed a banana and we were out the door by 6:30am. 

I don`t remember much of the drive, mainly because I fell asleep and finally came back to planet earth when we reached Leduc and the snow started. Oh great, more snow, more slippery roads. Good thing mom`s little car is a beast and can make it through anything! 

We continued fighting our way through traffic and after a long drive made it to the clinic by about 8:45am. 

Then the usual, I grabbed out my healthcare card and drivers license and waited to be greeted and registered by the much-to-chipper lady in the window. After that I took a seat, two minutes later we were taken back to the little room. 

Once there the pre-tranpslant nurse began another routine. Blood pressure, oxygen sats, weight. I pretty much know the drill now. I always try to remember what my weight was at my previous visit so I can compare. And I remembered it today, 51.9kg. I hopped up on the scale knowing that I had gained some weight, but not knowing how much. I almost fainted when I saw the number........56.5kg!!! I thought really!, this can`t be real, but I looked again and sure enough I had gained almost 5kg. Pretty impressive if I do say so myself. 

The doctor came in and started asking the same questions that I always get asked. How am I feeling. How am I holding up. Then he looked at my weight gain and seemed thoroughly impressed. It was definitely a positive in light of my upcoming transplant. He informed us that they have done 9 transplant since January. That`s pretty good. He knows that I have been waiting for 8 and a half months now and knows how hard it is to just sit around and wait. He told me that they have a soft spot for young women with Cystic Fibrosis and he knows I need a transplant as soon as possible. He told me they are doing everything they can to find me a donor. He was pretty confident that in the next year, they will find one, but he couldn`t guarantee anything. I`m hoping it is sooner rather than later since I am feeling good right now and think I would do great in terms of recovery. 

Mom and I had heard from a friend about a new machine they have in Edmonton that they are going to start using to assist in harvesting lungs and treating lungs that may need treated before being transplanted. The machine is from Transmedics and is called the Organ Care System. We asked the doctor a few questions about it and got some answers. Right now, they only accept about 50% of the lungs that are offered to them because of distance and condition of the lung. This machine will hopefully help raise that number to 80%. That would be awesome! More accepted lungs = Shorter waiting list! With this new machine, they will be able to travel further to get lungs (up to 24 hrs away) and treat lungs with heavy doses of antibiotics to get them in tip top shape before transplanting them. This is the first machine of its kind in Canada and Edmonton is trialing it right now. 

I was asked to take part in the trial of the new machine and of course I said yes! The trial will help to decide if the machine is of benefit to the transplant center. There is two parts to the trial. If lungs come in and I happen to be the recipient, there is a 50-50 chance that they will use the machine to bring the organs back. There is also a 50-50 chance that they will use standard procedure (packing the lungs on ice). The other part to the trial is if they find organs that are of my blood group and size they will use the machine to treat them if they don`t meet the healthy criteria set out by the transplant center. This could increase my chance of getting lungs faster! Click this link to learn more about this amazing new machine!

We left the clinic feeling upbeat. Plus, I was reassured that the team hasn`t forgotten about me and that as soon as lungs come in that match me, I will be getting the call!

After paying the million dollars for parking, we went over to the main hospital to visit some friends that are in. A couple people I met during my 6 week rehab program were in hospital so we stopped by for a quick visit. 

After that it was time to brave Edmonton`s snowy roads and head for home, but not before lunch! Mom and I decided to stop at Boston Pizza for french onion soup and pizza bread. We had a delicious lunch, paid for by me ( I know, impressive right), and then headed home. 

And again I don`t remember much of the drive because I counted sheep the entire way home. I guess my sleepless night was catching up to me! 

1 comment:

  1. Melissa Val sent me a link to your blog, it is very good, I will enjoy following it. Sandie Scott Respiratory Therapist.