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My pulmonologist said he wanted me tested and referred me to another specialty pulmonary team because he thought I had a serious lung infection; I did. I was diagnosed with a bacterial infection known as MAC early 2019. I was so sick I was admitted to the hospital to treat the infection, dehydration and they almost inserted feeding tube but fortunately the team of doctors said they’d monitor me on meds and my appetite, fortunately, I did NOT have to get the feeding tube. But I was on a bunch of meds, was in pulmonary rehab or physical therapy to build my lung function, muscle mass I lost and ability to breathe back up. I was doing good. Finally, after about a year and a half, I had what they call culture conversion (meaning the MAC bacteria was no longer present in my sputum or labs/my CT was stable) late 2020 until early this spring 2022.
Spring 2022 ‘the MAC was back’ but I felt fine, stronger and had no symptoms! Until I started feeling bad. Then I was diagnosed with pulmonary hypertension (PHT). It’s not regular high blood pressure, my BP is usually low. PHT is a thickening in the walls of the arteries (lung to heart connection). But by mid-summer I started feeling more fatigued (MAC was back) and winded and fast forward to August I had to restart rounds of antibiotics and infusions to treat the MAC infection. My doctors told me my lungs were worsening and I’d need a double lung transplant. By the week of September 15 I was in a weeklong transplant evaluation, the team saw what looked like a secondary infection on my CT. To prepare and make sure I am in the best possible condition to receive new lungs treated that as well, meaning another antibiotic via infusion.
My team of pulmonary doctors had already introduced me to the transplant team because my lungs were not in the best shape and wanted me to be aware transplant may have to be considered in the future ( we discussed this in 2021, years in the future, maybe five or so) but here we are less than a year after that conversation and I need new lungs.
My lung scans and my current physical condition along with the medical diagnosis made by the teams treating my sarcoid, MAC and PHT suggest I consider the lung transplant evaluation so I do not miss a window of opportunity for a better quality of life. Truthfully my lungs are getting worse, quickly. In short, I said all this to say, I now need a double lung transplant and need to be put on the transplant list.
I’m faithful that I’ll be put on the list and while I go through the process and next steps, I need your help to breathe easy again…
Before I am even added to the list, I must secure a minimum $5000.
Some of the uninsured expenses I’m facing for 3 months minimum during and after surgery are outlined below but the transplant team has said to plan for at least the first-year expenses and related costs.
Some uninsured related costs included but aren’t limited to the below that I know I will face:
Food/Gas/Parking for at least 3 months $3,500
Copays/Coinsurance for 3 months $500
Lodging (caretaker must be w/in 10miles MUSC while I’m in hospital) per week $1,100
My family and friends are raising money for the nonprofit Help Hope Live in my honor, George Myers, to fund uninsured medical expenses associated with transplantation.
I chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share my page on your social media platforms.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
2023 - February and I am still awaiting listing and my lungs are honestly not working with me like I want. I have had a two hospital stays, one in December and one in January. I lost weight both times. This is a tough journey sometimes just sitting up in bed out walking from the table to a chair leaves me gasping for my next breath. I continue to push to gain weight so I can be listed. I have a feeding tube now (it was placed while I was hospitalized in January) to help. I never imagined I’d be experiencing anything like this and I’m grateful for my family & those who support, they encourage me to keeping pushing and not give up, to make it to transplant and be a success as a transplant recipient. I’m fighting y’all!
My PICC line is out as of 10/15 and no more infusions for now! Thank goodness!
I am back on another inhaled medication, I was not too happy but I still have to take this to get rid of this infection.
This week (10/31/22) I'm in Charleston for pulmonary rehab and I will see how this goes. I just wanted to give an update and again thank you all who have contributed, prayed and given unselfishly. I am truly Thankful!
I restarted pulmonary rehab (going into my second full week now), this past week I increased minutes and reps on my rehab exercises. Which is good, it pushes me physically but to get new lungs I have to be physically ready to take the stress of the surgery. So pushing me over my limits helps. It is hard because I felt my legs burning the other day, whew!
Some days its not the physical stuff its the other stuff. My portable oxygen concentrator started messing up. It was cutting off and I exchanged it for a replacement and the replacement didn't push the air like I needed. Which made my oxygen levels drop. Stressful. So now I have tanks. My doctor already said they wanted to increase my oxygen liters (I needed more oxygen flow from my machine to decrease the stress on my heart and lungs - they work harder when you can't breathe). The increase in liters of oxygen means I have tanks (the cylinders) now, 8 liters of oxygen to walk around or when I exert myself and 2 or 3 liters while I am just sitting watching movies. That is a lot to have to deal with when going somewhere and those things don't last very long, maybe a little over 3 or 4 hours. In order to just breathe I will take it.
Just wanted to share a lil update. Again thank you all for the donations, sharing my link and sending prayers.
092822 Pet Scan testing at MUSC (the pic of me in hospital) was much better than the MRI machine during the week of evaluation. I actually took a a nap. At least the doctors will be able to tell if there is any sarcoid of my heart which could complicate my case. I trust God!
Also since yesterday so many have reached out to offer prayers, support, to share my link, donate or promise to donate...THANK YOU ALL! THANK YOU!
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Wishing you and your family strength during your journey! Praying you find better health soon!
Lenia Christensen
Prayers for your healing. May God perform a supernatural miracle !!!!!
Yolanda Roary
Cuz, I love you and I pray this transplant is everything you need and deserve it to be.
Saran Martin
Hang in there George... you've got this!!! Sending continuous Prayers
Tonya Pearson
My prayers are with you my friend and I hope you have a full recovery.
Darrin Skinner
Continuous prayers for strength and healing.
Jeanine Hunt
May OurLord and Savior continue to bless you and your family just continue to trust in him Please don’t hesitate to let us know if we can do anything to help out
Linda and James Reid
I\'m on it nephew,Love you much.
Brenda S Blackmon
George, my prayers are with you my classmate. God sees, God knows and God cares!! He is still a Miracle worker!! May God’s peace be with you always.
Camille
Camille Harrington
I am my brother's keeper
Joseph Simmons
Praying for you and your family!
Tamora Parker
My prayers are with you as you travel your journey.
Anonymous
We wish you the very best George and are praying with/for you during this process.
Tony and Nikki Edwards
Nicole Edwards
Sending prayers and positive energy your way.
DAISY RICHARDSON
Wishing you the best and my prayers are with you! Keep your trust in god!
Tammy Tomlin
Wishing you the best sending love hugs and prayers
Tammy L Humphries
You can count on me to began my race for you.
Brenda S Blackmon
Keep your Faith in the Lord Brother
Anonymous
Prayers that you get your lungs and health back. My husband is dual listed for a liver. We have been waiting at MUSC 501 days and Gainsville FL 103 days. We know what you are going through as his liver is affecting his lungs and is on 24/7 oxygen.
God Bless and praying you get this soon!
Tonimarie Babiarz
Make checks payable to:
Help Hope Live
Note in memo:
In honor of George Myers
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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