A busy start to the year.

The start of the year has been crazy.  We have had 1 dry run and 2 calls that involved high risk donors in the first 2 months of the year.  A high risk donor is categorize as a donor that may have done intravenous drugs, prostitution or other "high risk" activities. Both of ours were intravenous drug use.

There are a number of risks from this type of donor but the main risks are HIV and HepC. We did a great deal of research and were provided some great links by friends in the CF Community.  A few studies showed that patients with high risk donor organs actually did better than normal donors in recover and over time. It is thought that this is due to the younger age of the donors.  Another finding had stats on HIV transmission and showed only 1 case in 20 years from a lung transplant.

In both cases the transplant coordinators called and provided information far in advance of the normal process to ask about our interest in the possibility of a high risk patient. From there they go through the screening process and evaluate the opportunity.  In both cases they lungs were not good enough and were not even an option.  Needless to say we are hoping for a strong non high risk donor.

Having 3 calls in such close proximity is great and shows we are in a strong position on the list.  At the same time it is a roller coaster and after each pass you feel dejected and think how many more will it take. 

This past week included a check up appointment and general touch base on the other issues that arise when you have an organ failing.  Since she is hunched over coughing so much she has bruised her elbows from the continuous pressure put on them while coughing causing bursitis. This is build up of fluids in the bursa at the end of the elbow.  

Her lack of lung capacity has made it hard for her diaphragm to function properly. This ends up as change in her posture that requires her to prop her upper body up. Hopefully with ice and a change in position the pain and swelling will diminish.

As for lung function she was at 23%.  In December she was at 25%, and January was 22%.  The continued degradation is not a surprise.  Laura is working extremely hard on a daily basis to walk on the treadmill or up and down the street.  The continued effort to gain strength is needed for the recovery but becomes harder as each week passes.

There are other issues such as Anemia that have arisen due to a lack of Iron.  Makes complete sense when you think about how red blood cells carry oxygen and she does not have enough.  More wonderful effects.

As we look back at the blog it seems unreal that we have been on the list for 10 months.  When we first made the list the expectation was set a 3-6 months.  Obviously you hear 3 months not 6 and are excited.  The emotional roller coaster and the constant unknown does make for trying days.  Who knew that every ESPN 30 for 30 was a tearjerker.  The only option is to hunker down and know that we have it so much better than many others in similar positions.  

We can not thank you all enough for the support.  It really does make this possible.  We hope that we will be in the city soon working through recovery and enjoying the second phase of life.

We hope you are all well.