December 13, 2019
Happy Holidays and wishing a happy and healthy new year for you and your loved ones. We are feeling very grateful and thankful to have you in our lives.
So, the latest on Ms. Mabel Cecelia: December 11 was the 11 month anniversary of her double lung transplant at the wonderful Brigham and Women’s Hospital in Boston and happy to say the donor lungs are working 100% and no signs of rejection. After undergoing several more surgeries she is living independently, with assistance from Life Path. They are an organization that has been wonderful in helping her stay that way. She has someone come in a couple times a week to help out and a nurse visits once a week to make sure the meds are set up right.
Right now she is dealing with hip and leg pain that has made it hard for her to get around for several months now, maybe a side effect of the major doses of prednisone that she had to take in her fights to survive. So that may end up driving another surgery, which needless to say is a major bummer. If you can give her a call she could use some cheering up.
I am often mindful of how each moment that we have between birth and death is precious. Wishing you joy, compassion and love,
Phil
August 5, 2019
We are way overdue to send a shout out and our deep gratitude to @hospitalityhomesboston and the wonderful volunteer host family that has let us stay with them on several occasions during and after Mabel's double lung transplant. I don't need to tell you that living in Western Mass creates many logistical issues in getting treatment in Boston. A wonderful organization that deserves support! Thank you!!
August 5, 2019
Another surgery coming up on Wed Aug 7 -
I take Cecelia in for stomach surgery to solve her acid reflux problems. The transplant team is concerned that she is going to aspirate the acid indigestion into her new lungs and cause major problems. She will also undergo a bronchoscopy to check for signs of rejection or other problems with the new lungs. This will require general anesthesia, and she is feeling anxious, and not too pleased about the liquid diet afterwards. Please send good vibes and give her a call with encouragement if you can
June 22, 2019
5 1/2 Month update – Overall she is doing really well, though there has been another complication. I did two round trips to Boston this week - 5 1/2 hour drive – to drop Mabel off, then pick her up at Brigham and Women’s for 3 days in the hospital. No planned - a recent bronchoscopy showed signs of low level rejection of the donor lungs, and they’re gonna treat with huge amounts of steroids. She isn’t experiencing any discomfort or symptoms, and we were told to expect this in the first 6 months after transplant. They really monitor her so closely that they pick up on any problems immediately and treat them right away.
April 27, 2019
April 27, 2019
Mabel has been doing really quite well since her last hospital visit. She was released two weeks ago and her clinic visits are showing all systems go, so no hospitalizations required. And, the next clinic visit isn’t for another 10 days, so that’s a good sign.
She has been out doing some clothes shopping therapy and walking a bit around town, grocery shopping etc. – and is back in pulmonary rehab at the local hospital.
And I am no longer spending every night and most of the day at her apartment. She now has a life alert bracelet so I don’t worry so much and have been spending more time at my apartment. I spent every night at her place since she came home after the surgery. My only breaks came when she was in the hospital. Watch the attached video and tell me if you think she’s looking good…
April 27, 2019
April 17
Another wild week. After her chest reconstruction surgery on the 4th, I brought Sis home on Monday the 11th, feeling pretty well. She became very ill overnight and after calling the transplant team, I took her to the local ER that afternoon. They stabilized her and transported her back to BWH (Brigham and Women’s Hospital) in Boston by ambulance that night. Turns out she had a violently bad reaction to a med and they cleared that up so I could bring her back home.
When she has problems, there could be at least 3 different things going on: a reaction to a medication, a virus or bacterial infection (taking immunosuppressant drugs), or worst case scenario, acute rejection of her new lungs. The transplant team figures it out and treats her appropriately. A smarter group of people you will not find on this planet.
So, back on track and doing better for each of the last few days. We have a visiting nurse who is great and have arranged for a Home Health Aid/PCA to come by for a couple hours each week and Meals on Wheels will bring a meal by 5 days a week. Only 1 visit to BWH expected this week.
Hopefully smooth sailing for a while
April 2, 2019
Quick update - it's two steps forward and one step back! Sis is back in the hospital, she has some marker that is off and they are going to do some tests. Looks like that will be a frequent occurrence, so I may not report on every hospitalization. But this is definitely going in the right direction. She was major bummed out yesterday, sick of hospitals, but looks like her new lifestyle.
March 6, 2019
Just had a serious setback. Sis had to have surgery again on Mar 2 to reconstruct her chest and rib-cage - she apparently screwed up by sleeping on her side too much and overusing her arms and upper body. Roughly equivalent to having your chest smashed up in a car wreck. She will probably be back in the rehab hospital. She sends her love and gratitude to everyone.
One word - "indomitable"
adjective
impossible to subdue or defeat.
"a woman of indomitable spirit"
February 6, 2019
She has been working hard with Physical Therapist and Occupational Therapist to regain her physical strength with the new lungs. They took her for a walk OUTSIDE yesterday on a relatively warm day. Anticipating release from the hospital tomorrow.
January 28, 2019
Change of plans. Sis won't be discharged tomorrow. PT/OT want to do more work with her. Not a lung issue. She's just been laid up in bed for so long her knees and hips are weakened.
January 26, 2019
Out of icu and into a rehab facility to continue with her amazing incredible recovery. Today is Sat, expect she will be discharged and come home on tues Jan 29. The transplant team says she is a super star. Indeed!
January 22, 2019
Cecelia is really doing great after her lung transplant! Here she thanks everyone who has helped and supported her...
January 17, 2019
Woohoo!! Sis underwent a successful double lung transplant in the early hours of Jan 11, 2019. Her recovery is progressing well and she is feeling tired and sore but breathing on her on with the new lungs. Thank you so much for your support. More later...
January 4, 2019
Jan 2, 2019
As of today, Sis is in the Hospital at Brigham and Women’s in Boston, Massachusetts. This is where her double lung transplant will take place, but she is not there for the transplant. There are no donor lungs for her yet. She is there because she has had 4 Emergency Room visits/admissions to our local hospital in the last 2 months, only managing to stay home for a few days at a time before needing to be hospitalized again.
The last time after being admitted locally, she was transferred to Brigham and Women’s for the best care available for her condition (interstitial lung disease). She remains active on the transplant list with a fairly high number (a good thing), but realistically may not last long enough to get the transplant.
Overall her attitude remains very upbeat, she can take/make calls and she fully enjoys getting to know and interact with all of the extraordinarily talented people that are keeping her alive, giving her hope and a shot at staying alive. With her Southern accent and feisty attitude, she’s a rock star
Thank you thank you thank you for all that you are doing to help us through these intense and fleeting days.
December 11, 2018
Sis is stabilized and out of the hospital. Will be staying at my place for a while. She was able to live independently the last 6 months. Still in the game.
December 8, 2018
Woohoo! The transplant team says to be ready for the CALL at any time. Packing a bag to leave by the door, the Subaru is gassed up and ready to rumble. A bit nervous to say the least.
December 4, 2018
As I write this, my sister is dying
Right now, my sister Mabel is in the hospital with lung failure due to Advanced Interstitial Fibrosis, a terminal lung disease. This is as serious as it gets. Her lungs are damn near useless. She is close to death. She has been hospitalized a half dozen times in the last year since her initial diagnosis. Each time, she almost died and brilliant, dedicated, compassionate medical professionals have saved her.
Blessings and heartfelt thanks to all caregivers, family and friends that have kept her going, especially the extraordinary people who work in the Emergency and Intensive Care Departments.
We are hoping she can be stabilized and go back home to wait for donor lungs to become available. It's been a race against time this last year, trying to get her qualified and listed for a transplant before the disease kills her.
I brought Mabel here to Western Mass from Birmingham Alabama, where the doctors had essentially sent her home to die after her first serious hospitalization. She was unable to work and consequently lost her job, her apartment, and had to give up her beautiful, beloved dog Iris to adoption. Sis simply wasn't capable of taking care of Iris or herself. We moved her here, and began the process of keeping her alive and restoring some quality to her life, by signing her up with Masshealth. Thankfully, the healthcare system here doesn't just send you home to die.
Mabel has been approved by the transplant team and insurance will cover a double Lung Transplant for Mabel at Brigham and Women's Hospital in Boston, MA. As you may already know, there are a lot of expenses that even a nearly million dollar operation does not cover. The HelpHopeLive site (helphopelive.org explains these in detail.
My name is Phil and I have been my sister's primary caregiver for a year now. I am doing all I can to support her with help from all of you. Thank you so much for everything you do and have done to make things better for Mabel.
Your contribution here is tax deductible, and will help this strong, beautiful woman get through her life-saving but arduous journey. She really, really wants to live. You can help make that happen.
Many people have already contributed to help us get reliable transportation. Now we are asking for your help to cover the expenses of supporting her through one of the most complex, profound and harrowing medical procedures out there - a double lung transplant.
So please make a donation right now, everything helps. And you know this is an urgent request, no one knows when donor lungs will become available, and all the docs are saying it HAS TO HAPPEN SOON!
Donating through Help Hope Live (helphopelive.org guarantees that your donation will be used properly.
So please make a donation now and know you are helping Mabel and the support team get through the upcoming trials and traumas.
Thank you and remember every bit helps!
