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Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Wrap up & heading home

Wrap up & heading home

The alarms went off at 6am... it was early but we were almost done with the transplant evaluation. Friday morning we woke up and packed up our belongings. We would hit the road after our last appointment. Our first appointment of the day was a cardiopulmonary instruction and interview. This was a meeting with a rehab/physical therapy nurse. She went over how Rima could improve her physical health before the transplant.  The three main areas she wanted us to focus on were stretching, aerobics, and muscle conditioning. She suggested that Rima start working out 30-45 minutes 5-6 days a week. After the transplant your body losses a lot of weight and muscle mass. So the more you can do before and the better shape you are in pre transplant the easier it will be to recover. 

Rima and I have an action plan on how we will accomplish this. She will alternate between aerobic exercise and muscle conditioning. The legs are a main concern for us. Apparently that is the muscle group that has the hardest time recovering post transplant. Squats will be her new best friend. 

The second appointment of the day was with Megan her transplant coordinator for the closing evaluation. In this meeting Megan went over all the test results that had come back from the week. Nothing concerning was brought up. Rima's heart is strong which is a very big win for us. Due to her being on oxygen 24/7 and the stress her heart has been through over the last couple years we were very happy to hear that it was beating strong!  Megan also went over all the scans and x-rays with no red flags. The blood tests did find a few antigens in her but nothing major. They are so small that even if the donor lung has minor antibodies against the antigens they don't think it will effect the post care because the percentage is so small. Rima's FEV1 was 24% which is great because that means she is 1% away from being able to enter a study that might help her lungs!

While going over the PFTs and other tests for lung volume, she mentioned how large Rima's lungs were... more than once. They are 127% which means they are 27% larger than normal lungs. Most CFers lungs are larger than normal due to the fact that their bodies try to make up for the fact that they don't get enough air. So the body grows the lungs hoping that larger lungs mean more air. Unfortunetly that's not the case. It was a cool thing to find out though. Evolution in the works right in front of me.  Her body had tried to compensate for her without us even knowing....high five Rimas's body! 

  Rima's chest X-Ray

Rima's chest X-Ray

After the meeting with Megan, Rima had an EKG or electrocardiogram. The test checks for problems with the electrical activity of your heart. It shows your heart's electrical activity as line tracings on paper. This was fairly a quick test, the part that took the longest was applying all the stickers to her. After this test we had our last meeting of the week!!! We met with one of the three lung transplant surgeons at MNU. Dr. Shumway, was very nice. She made us feel very safe. Having trust in her and her team is key especially when undergoing a huge surgery like a transplant. Her father was the first doctor to even preform a heart transplant, so you could say it runs in her blood. We feel very confident in her, go MNU! We won't know her "listing" number until the board meets about her, which can be up to two weeks. So we are back on the waiting game until then.

  EKG machine

EKG machine

   I know, I know...I wanted to press all the buttons too!

 I know, I know...I wanted to press all the buttons too!

After the last appointment we basically ran out of the hospital it was 2pm and we had a 13 hour drive ahead of us. We stopped and picked up some Chipotle for lunch....guac, guac, guac! We were done! I think the total number of appointments we had that week were 30 in 5 days. We were so happy with MNU, everyone was so nice the whole time we were there. The staff went up and beyond to help us out and make us feel comfortable. I will say this, that when the transplant does happen, we will be in very good hands. These are relationships that will grow for us over the years, a transplant family. 

  Editing the blog

Editing the blog

The drive back to Denver was pretty uneventful, thank goodness compared to the drive to MNU. We did not speed through Iowa. We saw so many cops in that state. Next time we are going to try to avoid Iowa, if only for the cops. We did kill a lot and I mean a lot of bugs. Our windshield looked like we had driven through a solid wall of bugs, grosssssss. By 1am I was so over the drive. The last 2 hours were the worst. I have no problem with 13-15 hour drives, but after the week we just had, no thank you. We got home around 3am. I unpacked the car and we got ready for bed. We had made it home in one piece. We had so much information in our brains from the last 5 days. How did other people deal with all of this? I had decided that over the next two weeks to make a personalized binder for us with all the packets papers and notes we had taken. Maybe we would even bedazzle the cover...

That one time that....

That one time that....

Almost to the home stretch...

Almost to the home stretch...