FAQ

First, let me say that Emily came "home" to the town house about 2 PM on Wednesday and is doing really well. She was able to enjoy a great birthday with family and friends! Because she was in the hospital, she did not go to Clinic which means she probably had more free time on her birthday than she would have otherwise. Another unexpected blessing. God is so cool. :-)

Here are some answers to a few frequently asked questions:

1. Mail - Please continue to send all mail, gifts, packages, etc. to their home address. They are currently having their mail shuttled from home and will hopefully get there mailbox set up here so they can have it officially forwarded through the postal service. Since they don't know how long they will be at the town house, they don't want to have mail sent here only to be gone before it arrives. If you do not have their mailing address, please email me.

2. Practical Help - If you would like to help them with practical needs, please see this post and this post.

3. Financial Help - If you would like to help them financially, please see this post and this post.

4. Staff Infection - While Emily was in the hospital the first time, they found a staff infection called MRSA during her bronchoscopy. Her bronchoscopy that was supposed to take place this week was rescheduled for next week. However, Emily has no symptoms and said that most "healthy" people can carry a staff infection like MRSA and not even know it. It just becomes an issue if it flares up. So right now, it basically is not an issue or anything of concern.

5. Blogging - If you want step-by-step directions on how to comment on the blog, please see this post. If you are interested in starting your own blog or just understanding more about what blogs are, check out this link.

6. CF - If you are interested in learning more about Cystic Fibrosis, please visit www.cff.org.

7. Lungs - Emily's new lungs do not have her genetic makeup since they are donor lungs. Thus, her new lungs do not contain the CF gene. Because of this, these new lungs will not deteriorate the same way that her old lungs did. They will basically not be damaged by her CF but by having a lung transplant, she is not cured from CF either. Her body, particularly her sinuses and pancreas are still affected. The concerns about her lungs turn to rejection and infection of her lungs which will be an ongoing but hopefully, very minor part of her life. She is advised to wear a mask in unhealthy situations like unclean/dusty air, congested areas like malls, when other people around her are sick, or when children have their vaccinations. She is still clarifying with her medical team about specific situations and it will continually be a learning process to adapt to life with new lungs. She also will always be on anti-rejection meds.

8. Donor Family - Neither party is allowed to contact the other party for at least 6 months, possibly a year. Then, if either party declines contact, there will be no contact. Emily and Jason plan on writing a letter to their donor family and are hopeful that they will want to be contacted and they will get a chance to meet them. I cannot even imagine what that day would be like! Emily also said that UAB has an annual gathering of some sort for donor families and organ receivers.

9. Post-Transplant - Emily's 8 weeks started the day of her surgery. Sunday will mark 3 weeks! Someone has to be with her 24/7 for the first 8 weeks and they are supposed to be close to UAB to attend clinics and for situations like her Monday morning scare. They are hopeful that since home is not too far away, that they will be able to go home sooner than 8 weeks. It will be a couple of more weeks before that is even on the table though. The Town House is a block away from the hospital entrance and is very suitable for their living needs. But, there is no place like home!

10. Post-Seizure - Emily was in the hospital for almost 3 days following her seizure. They ran many tests including CT, MRI, EEG, (and some other ones that I can't remember), and everything turned out fine. The med she was on, Prograf, is one of the anti-rejection meds and one of the side effects is seizures. Emily just happens to be one of those in that small percentage that are affected. They are taking her off of that medication and putting her onto a new medication that is a very similar med. Hopefully her body will like that one much better!

Ok, I think that's it! If I missed one of your FAQs, please leave a comment. Thanks so much! ~Emily T