Feeling Overwhelmed

Early this morning Ryan, Laurel (his mom) and myself headed out for our big visit to U of M.

Our first appointment (8:15) was transplant class where we met with the post-transplant coordinator, Cathy. She explained all of the ins and outs of transplant...there was so much information coming at us.

At 10:00 we walked over to the University Hospital where Ryan had a blood gas (very painful) and did his 6 minute Hallwalk (he must always be able to walk 450 ft. during this walk with as much oxygen as he needs -- he exceeded the 450 ft. by a lot this time, but as transplant gets closer it will become more difficult).

After the Hallwalk, we went back to the Transplant Class. We met with Jennifer, the pre-transplant coordinator; Dr. Pickens, one of the surgeons; and Lisabeth, the social worker. Most of the information given to us was a repeat of stuff we had heard in the earlier session, but it allowed us another chance to ask questions as well as meet more members of the transplant team.

Around 12:15, Ryan had a Chest X-Ray done and then we went to the cafeteria for a quick lunch.

At 1:00, we went to the Pulmonary Clinic where Ryan had his Pulmonary Function Test (PFT'S). We squeezed in a visit to the Blood Lab where Ryan had 15 vials of blood drawn.

At 1:30 we went back to the Pulmonary Clinic where we met with Dr. Ojo. She is Ryan's "primary" doctor at U of M. She is very supportive and is a great source of information, but this was probably the most difficult meeting of the day. She said that Ryan really needs to cut back in the amount of time that he is working in a week and focus that energy in exercise and in life. This was hard to hear -- Ryan is such a great provider for our family! He does not want to lose that role -- it will be a difficult balancing act as we try and figure this out. She also wants Ryan to continue going to Pulmonary Rehab twice a week until he actually has his transplant. This would be a huge benefit to him in his transplant recovery, but it will no longer be covered by insurance after next week.

3:00 brought us back to the University Hospital (we went back and forth for almost each visit). Ryan had a Lung Vent. This was an hour long procedure done to measure which of Ryan's lungs is healthier -- this will have a major role in deciding which of Ryan's lungs to transplant first.

At 4:30 we were back in the Taubman Center for an EKG. This was our last "event" for the day. Thankfully for Ryan this was a very quick procedure and they allowed him to stay in the wheelchair.

We were in the car at 5:00 and home by 7:15. This long day for me was completely grueling for Ryan. Not only did he have to be subjected to several uncomfortable procedures, but he was and is not feeling well today.

Key Information:
- Ryan needs to have a right ventricle catherization and meet at GI doctor at U of M before he can be listed for transplant. He has several tests he needs to get done here as well. He will probably also need to have his sinus surgery done at U of M as well.
- Once listed for transplant, we will not be allowed to travel more than 4 hours from the hospital without Ryan being put on "hold", meaning if his name comes up he would not be called. Ryan will also be put on "hold" during any hospitalizations not taking place at U of M.
- The wait for the transplant could be as little as 2 days and maybe up to 2 years.
- Information that listing goes by: blood type, size, and Lung Allocation Score (determined from all of the different tests).
- Ryan will have a minimum of 5 broncoscopies in the first year.
- Time in the hospital due to actual transplant will be between 7-14 days if all things go smoothly.
- Ryan will be on 3 medicines for the rest of his life to fight rejection.

I know that I am missing important information, but I am tired and it has been a long day. Both Ryan and I are very overwhelmed with all of the information that has been thrown at us today and we will probably need a few days to process it all. Please feel free to email us with any questions, but if possible give us a few days to figure things out before calling. We really appreciate the prayers of our family and friends! We would not be able to go through this without your support!