Amber Is Doing Great!

Hi Everyone!
After 70 days in the hospital, 21 of them post-transplant, Amber was finally discharged last Sturday. Sorry for the gap in updates, but things were hectic with medication and equipment deliveries, new schedueling, and sheer fatigue. She was in a week longer than normal because her right lung would not stay inflated off of sucion to the chest tube, but time took care of that, along with Dr. Davis yanking the suction tubing off of the canister and saying “well, there ya go!”
It is so nice not to be at the hospital everyday…just home with the three of us (except we can’t stand Susie being gone..she was such a pillar of strength for us all!) We have had a few visitors lately; my dear friend Joannie, Rick, and Leah’s friend Katie. Amber has been taking alot of long hot showers, catching up on sleep, eating homecooked meals and doing all the meds and measurements she’s supposed to (daily weights, blood pressure, blood sugars, spirometry, etc.). She started her pulmonary rehab at the Duke Center for Living yesterday and did great! She blew through her workout without a hitch. Her breathing is perfect and her endurance is only limited by her muscle weakness from inactivity for so long. She will be there 5 days a week for 6 weeks or so, except on the days she goes to clinic, which will be once a week for now. Today was her first clinic day which was a long one. Blood work, chest x-ray, pulmonary function tests, ABGs, then lunch followed by waiting for hours to see Dr. Snyder, one of six transplant pulmonologists on the team. She said she couldn’t find anything wrong with Amber, and she looked wonderful. Her PFTs were 60 today!(FEV1) A far cry from the dismal 11% not so long ago. That’s 1.97 liters compared to .4 liters! She also got all of her staples and stitches out, and consequently feels less restrictive through her mid section.
I realized that Amber has quickly made friends here, chatting with people in the waiting room and people stopping her in the halls and cafeteria. They ask each other about their experiences, meds, where they’re from, etc. Some are patients, others have just seen her around. People here are extremely friendly and outgoing, not nosey but genuinely interested in other people’s wellbeing. It’s a refreshing pace from Boston, although we all miss our friends there terribly.
Leah is leaving tomorrow to come home for 10 days for her job, to ski and see friends, and take a well deserved break. I am coming home for 6 days at the end of March. So one of us will always be with Amber, but she is getting stronger and less dependent everyday. I believe as days go by she will do better and better, pushing herslf at rehab and continuing to heal, and her pulmonary function will soar upwards to a remarkable new baseline that has us ALL breathing easier! We celebrate this gift of life and Amber’s second miracle, and have to shake our heads when we think of ‘MGH’ stating that all there was to offer Amber was “palliative care” (basically, hospice). Even when something seems hopeless, don’t ever give up!!
Thank you all soooooo much for taking the journey with us, for your support, encouragement, caring and love. It keeps us going and nurtures our souls, and it is cherished more than any of you know. Love, Laurie