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Breathing is something most of us take for granted. I know I did. But when your lungs do not provide the air you need, you need to slow down and work at the pace your lungs dictate. I’ve been slowly losing lung function since I was diagnosed in 2008 with Alpha-1 Antitrypsin Deficiency. I have followed the advice of my doctors to help make my situation better and it has helped.
I have been told that while I do not need an immediate lung transplant, it will eventually be unavoidable. The medical team at the Cleveland Clinic will keep a close eye on my condition, and when the time is right, we will be ready to move on this.
This brings me to the purpose of my letter. Organ transplantation is life-saving, but very expensive. Even with insurance I will have many uninsured, transplant-related expenses such as: co-pays and deductibles, doctor visits and the costly immunosuppressant medications that I will need to take for the rest of my life. As a result, Cleveland Clinic’s transplant department has recommended fundraising.
To help ease this financial burden, a fundraising campaign in my honor has been established with HelpHOPELive (formerly NTAF), a nonprofit organization that has been assisting the transplant community for nearly 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Great Lakes Lung Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Thank you for considering making a contribution.Your financial gifts will be greatly appreciated and will help me make it through this difficult time.
With sincere gratitude,
Jeremy White
(937)206-1512
jer.n.lorie@gmail.com
As of Friday, July 22, 2022 I have been listed for a bilateral lung transplant with Cleveland Clinic. This has all happened so fast. My doctor at the Clinic expedited my testing to get ahead of my health decline. Now suddenly I'm waiting for a call. It could come at any time.
I'm still seeking help with uninsured expenses related to my transplant. Please, if you can, make a secure, tax deductible donation. Claim it on your taxes next year and get it back.
The Deciding Factor
One night in the last week of 2021, I found myself munching Christmas goodies and watching football. When I headed to bed that night, I laid down and started feeling nauseous. I got incredibly sick and vomited more than I have in a very long time. It got so bad, I called my doctor the next day and made an appointment. She prescribed me a few common medicines to counteract problems with my lungs, as she knows full well my extremely low lung function. The meds were doing great for the first few days. I was on the mend. Then I got hit with an increase in CO2. My breathing became very labored. I tried to push through it for the first couple days. I thought I could get past it as I did many times before. On the third day I decided I should seek help at the ER. My girlfriend, Erin, took me to Riverside Hospital in Columbus, OH. She dropped me right at the door. I took a few steps to walk in and had to stop as I couldn't breathe well enough to take another. Soon a receptionist noticed me standing there, just inside the door, and brought over a wheel chair. A few minutes later Erin came in from parking the car. She wheeled me into the ER waiting room and I got checked in. Because my problem was breathing, they wasted no time and took me back for an initial diagnoses of my symptoms. I was then taken to an ER room where many different professionals came in to talk to me; each with their own specialty in medicine. I was put on a Bi-PAP machine and after a lengthy wait, was admitted. My condition was declining and quite frankly, I was scared of what might follow. The next three or four days were just a blur. The only thing I really remember well was I thought I was dying and all the doctors and nurses were tip toeing around it. I told one of the doctors that and he reassured me that he didn't see any indication that I was going to die. Erin had been gone for a little while at this point. She had to leave the hospital to keep her daughter on her schedule. I was sitting there waiting for her to come back so I could tell her I loved her. I didn't think I'd see another day. I remember her coming back and I expressed my fear while crying. My fear had escalated so much the doctors gave me some anti-anxiety medicine, which I believe pulled me down further. My next memory was waking up in the ICU. I had been told that many blood gas tests had been done and my arteries kept blowing out. My wrists were extremely bruised. They said my CO2 levels were through the roof. I was also told that I had been intubated, sedated, and arms restrained. I don't know how long I was in that situation, but I guess I pulled the tube out with my knees. Erin had been in contact with my kids. Everyone was afraid I was going to die. With Covid restrictions on who could visit, we had to beg, borrow, and steal to get my kids permission to be on the visitors list. From that point on I was back on the mend,... slowly. They took my weight one morning and showed me what it was. The scale read 150 lbs. I said “What!? That can't be right!” I had lost 20 lbs. And for a guy who is 6'2”, I didn't have 20 lbs. to spare. Erin told me I hadn't eaten much at all the first few days being there. After that I started ordering a bunch of food to get my weight back up. I found out why I hadn't been eating. The food was horrible.
Since I'd been on a Bi-PAP most of the time to keep my CO2 in check, we decided it best I get one for home use. We asked the staff at Riverside if that was something we could get tested and approved before I left the hospital. They agreed to do so. The first night of testing was botched. I'll spare you the details, but lets just say the following morning I was so mad I was spitting nails. I expressed my anger to each doctor and nurse I saw that morning. They assembled a different team to do the testing the next night. This time they got it right. Once I got approved for the Bi-Pap, I was discharged to go home. I was still very weak, but after 9 days in the hospital, I was ready to get out of there. It was 4 or 5 weeks of recovery before I felt strong enough to follow up with my Primary Care Physician. All in all it was a very scary episode of my life, or what felt like the end of it. It was enough to make me realize putting off a lung transplant any further was no longer an option.
I had been working with OSU for my transplant evaluations, but they weren't moving fast enough. I kept trying to get a response out of them for 10 weeks after I left the hospital and got nothing. I decided it was time to go back to Cleveland Clinic. I reached out to them and immediately received a response. They got me in for my usual testing on May 4th, 2022. After hearing the story about my stay at Riverside, my transplant pulmonologist decided my need for new lungs was very urgent. We're going back to finish all testing in July and hopefully get back on the list by August.
I'm doing everything in my power to remain as healthy as I can, but the financial needs for my rapidly advancing, life saving surgery have not been met. I'll need those in place for when that time comes. If you could please help, even just a little, it would go a long way towards my success after transplant.
When I lost my wife on my birthday in 2016, my world fell apart. I experienced the deepest, darkest grief of my life. I never knew I could be so low. Somehow through it all, I managed to fight harder for my health, I guess to honor her as she fought a valiant battle with cancer. I managed to improve my health through diet and exercise so much, I got myself off of supplemental oxygen for about 3 1/2 years. I am at a much healthier weight and I believe I've set myself up to survive and thrive after the eventual need for a transplant. During that time of healthiness, I got back out into the social scene and found my way through my grief. I put myself out there in the dating scene, which was absolutely horrendous, but through my perseverance found someone to share my life with. I was enjoying my new life with my new love, and the natural progression of COPD caught back up with me. Now I'm back on supplemental oxygen full time and working towards a transplant again. My hopes are to be back on the list before the end of 2022.
I just found out today that Cleveland Clinic has approved me for a double lung transplant at Monday's committee meeting.
Now waiting for my insurance to give approval and a couple other formalities before getting listed.
I'm very excited about this. Can't wait to be able to breathe easy.
11-18-15
The thought of being opened up and having a transplant is a little intimidating. I've let my health go a little while taking care of my wife during her battle with breast cancer (happy to say she won that battle) and I've been afraid I might be getting closer to being put on the list, although that is the ultimate goal.
I'm proud to report that I've gotten back on track and found the motivation to get back to my exercises and I'm feeling better everyday.
I'd also like to add, though I fear the invasive surgery that I inevitably have to have, I'm very confident in the experience and professionalism of my surgeons and transplant team at the Cleveland Clinic Foundation. They are definitely some of the best healthcare specialists in the business.
Hey there Jeremy, I wish I could donate more, but I’m keeping you in my prayers & truly hope the financial worries are a bad memory soon. Prayers not ceasing for good news and back home!
Susan Sweeney
Susan Sweeney
My childhood friend, Deven Johnson had a transplant a few years ago. Good luck with yours!
Lisa Koch
Blessings and prayers to you.
Laura McNeil
Jeremy, you continue to be in my prayers and heart! I love you friend and I’m so happy for you!
Sherry Priest
Good luck ,Jeremy!
Mindi Golden
I pray you get a donor quickly! Good luck and fast recoveries Jerry
Mike Cain
Mike Cain
Definitely rooting for you, Jeremy!!
Sally Conner
Hi Jerry,
I'll see you Saturday. I hope it's a success and everyone has a great time in your honor. In your honor that you will be with us for many, many, many years to come. :) Rock on man!
Love, Tina C.
Tina Conn Jamestown, OH
You got it, dude!
Chrissy
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Jeremy K White
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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