It is now 7 weeks post transplant. As far as the actual surgery and her breathing goes, Allie’s been doing very well. She had her first outpatient bronchoscopy and biopsies this past Friday. Great results – There was NO rejection seen on the biopsies and the cultures are so far negative. It’s hard for me to process this sometimes – how she went from being so sick, close to leaving us, and now just weeks later she’s back healthier than she’s been in many years as far as her lungs go. She’s totally off oxygen. For those of you who follow PFT numbers, her FEV1 was 54% two weeks ago in clinic and last week went up to 77%. When she saw those results it actually made her cry…and impressed her transplant team. She hasn’t been in the high 70s in a very long time, I actually can’t remember when. To put this in perspective, the best we can tell is that her FEV1 was in the 20’s and probably dropped even lower in the weeks prior to her crashing and being intubated and put on the vent in Rochester. She was too weak to do the PFTs at that point. Now her PFT numbers are coming close to that of a healthy 30 year old woman without CF. What I’m noticing the most is she isn’t coughing. For those who know Allie, her cough was body wrenching and constant. Now she could be in the other room and I wouldn’t know it; that hasn’t been the case in years. It’s really quite remarkable.

She is still working through some non-lung problems. She has a chronically swollen right lower leg and foot. This is the result of one of the ECMO cannulas that was in her right groin vein. from being on ECMO for a month. She has to wear a compression stocking on that leg. There are also side effects of her anti-rejection medications, including hand tremors and painful neuropathy especially when her right foot is more swollen. She’s getting around great but that painful foot is limiting how far she can walk right now. Hopefully that will lessen with time and with the addition of a medication she’s taking for the neuropathy. Then there’s GI issues causing her a lot of trouble, enough that she had to be admitted to the hospital again last night through the emergency room. The problems are related to both longstanding CF related gut issues (DIOS, which is a type of bowel obstruction unique to CF) and gastroparesis and slower GI motility related to transplant. Wikipedia’s explanation of gastroparesis: Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Decreased motility is a complication of lung transplant in some people. Between the DIOS and the GP, she’s been having a lot of abdominal pain and vomiting despite having a ravenous appetite. Eating anything more than small amounts causes her real problems. We are waiting on delivery of a medication for her GI system which is being sent from Canada (not FDA approved yet in the US) as it has helped some other CF patients with similar problems post transplant. This is one of the medications that is totally out of pocket which COTA funds will assist her with. Fingers crossed it works for her.

She been having physical therapy twice a week for reconditioning and strength training. She’s made such great progress and she’s noticeably stronger every day that they’re discharging her from home PT and she’ll start pulmonary rehab soon.

Overall, It’s really humbling and amazing that she is breathing so much better, getting stronger again, and she is so looking forward to the day she can reunite with her little boy. All thanks to the selfless decision of a donor’s family. April is National Donate Life Month. Allison has already received a letter from her donor’s family. He was a young man, very close to Allison’s age. I thought about him a lot the other day as I watched Allie walking into Starbucks to get her latte, without oxygen, without fits of coughing. She looked like the Allie I used to know before she was so sick. I continue to thank that young man’s family for saving my baby girl. Allie wrote a very nice letter back to his family this week. I thought about how nice it might be for those of use who also have been touched by this family’s decision to donate his organs to also write letters to his family; to let them know the far reaching impacted he had had with his gift. So Thankful.

We are more than halfway to our fundraising goal, thanks to all our wonderful family, friends, coworkers. Please help celebrate National Donate Life Month. From the NDLM site, “For the 2018 National Donate Life Month artwork, Donate Life America was inspired by the image of a rainbow and Maya Angelou’s quote, “Be a rainbow in someone else’s cloud.”  https://www.donatelife.net/ndlm/

Also, there is another fundraiser this coming weekend at Rookies. There will be some really amazing great raffle prizes at this event, including a grill, floor seat tickets to Kevin Hart, a power washer, an Amazon ECHO,  GCs for wine, hair services, and restaurants and much more. There is great mystery prize raffle, too. Please see on our individual Facebook pages for details and I hope to be posting something on this site before the event on Sunday.

Thankful for all of you, for organ donors, for organizations like COTA,

Love to all.