MobilityWorks
Accessibility for all: Helping people connect with who and what matters most
Searching...
No results found. Please try modifying your search.
I have managed to live a positive productive life as an advocate for the aged and disabled, and as a Middle School Substitute Teacher. I am the middle child of 3. I am the sole provider of my household.
I am asking family, friends, and people in our community to please consider a donation of any size to help me cover basic living expenses and a portion of my medical related expenses. Your donation will go towards transplant expenses that are surprisingly not covered by insurance like the cost of lodging near the transplant center for 30 days where I am required to stay following discharge, transportation costs, and monthly anti-rejection medications needed to take for the life of my new liver. I have been told these medications cost upward of $5000 a month.
Before “HeHe”, I had recently graduated from Utica College with a Healthcare Administration degree, and passed state boards to practice as a Healthcare Administrator in my state. My dream was to be an Administrator at an Assisted Living Facility to continue my work with the elderly, and to take care of my family.
But in 2015, I started having pain in my upper right abdomen, lost weight, had problems walking, and had chronic fatigue. Despite endless nights in the Emergency Room, X-rays, CT Scans, PET Scans, and MRI’s I still managed to donate time to the things I believed in like volunteering to teach Burmese people English, worked to protect the rights of elderly and disabled people, and ensured that Nursing Homes and Assisted Living Facilities were kept up to standards according to the laws in my state. I started a “Robe Ministry” in which I donated robes and housecoats to elderly people who were in need. I always had a heart to serve which is why my career in healthcare continued on for 20 years. But now, I am in need. No one ever thinks they will be on the other side in need of help, but it happened to me. It changed my life.
Everything changed for me and my family in June 2016, only months after graduation when severe abdominal pain sent me to the Emergency Department where I was given a possible Cancer diagnosis.
The following months, I went through Biopsies, Endoscopies, and Colonoscopies. It has since become urgent that I receive a transplant because the MRI in June 2016 compared to the MRI in December 2016 showed that the tumors had increased in size. From June 2016, we’ve been in a constant battle to try to save my life with visits to three hospitals and now visits three times a week over 200 miles away After several biopsies, CT scans, PET Scans, and MRI’s in 2017 I was finally diagnosed with Hemangioendothelioma. “HeHe” went undetected for a long time before being diagnosed. Even now, it can spread from my liver to lungs and other soft tissues. Some days I cannot walk because movement causes severe pain especially on rainy days. The cause of “HeHe” is unknown. As the disease gets worse, it becomes like Alzheimer’s–not knowing who family members are or where I am.
What makes us hopeful is that with a transplant and advances in technology there is a chance that I can recover and live a full life. By getting involved you will be helping to save a life. Donations will help ease the financial burden of a transplant and allow me to focus on a healthy recovery and long life. Family and friends of Pamela Johnson is raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.
Pamela has chosen 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.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Thanks to all those that came out and made the "Hope For Pam" Fish Fry Fundraising event a success. Thanks to all the wonderful friends and family who volunteered their time on Saturday. One thousand dollars was raised as a result of all your efforts, time, and donations. It has become eminent that I receive a transplant now because the spots on my Liver had increased in size during my last MRI.
On June 25, we travel to Durham to see the Nutritionist. On June 26, we face another big hurdle as we travel back to Durham for a series of tests, including an updated MRI. Testing will start at 8am.
Currently, my family and I live 2.5 hours away from the transplant facility. My morning will begin around 4:30am and end around 7pm. Thirty minutes of that time is time allowed for parking once we arrive. Last visit, I waited in the lobby to see one physician but once they called me in the back, a different physician had been scheduled to see me for a complete different diagnosis. This is an example of how quickly things can change and how flexible one must be. One should also be willing to take a certain amount of criticism. Criticism is only to help one improve upon areas that are lacking in hopes to make recovery after transplant go more smoothly. I've learned quickly that these doctors are the best in the world. They taught me a lot about myself, and my illness. Along the way I've found strength in small unexpected places. I've learned to have faith and trust and not to worry so much because eventually things will work out.
I will admit I am terrified to see the results of this next MRI. At the same time, I am anxious to see the results of this next MRI. I am learning to live everyday as if it is my last, love like it's no tomorrow and finding strength in unexpected places because any day could be my last knowing that one of these Hemangiomas on my Liver could burst while I am eating and I could die.
I am scared, but I must move forward....always forward, and never back. Looking forward to my future. In my future is my insulin pump that I have waited to receive for 34 years so that my Diabetes is better controlled which means less complications. In my future is my Doctorate Degree in English. In my future is Entrepreneurship. In my future is finishing the work I've started with the aged, disabled, and disadvantaged. As long as I believe my future is worth fighting for I will fight the good fight and win against Hemangioendothelioma. Already on to planning the next event. Look for the "Hope for Pam" Hot Dog Lunch and Yard Sale nearest you.
I was diagnosed with Liver Cancer "HeHe" in 2017. The first hospital I visited to be placed on the Transplant List rejected me.
"HeHe" is a disease that many have only seen in a textbook. During this visit, I could tell that the doctors were hesitant to place me on the list. I have been told that my other illnesses such as Diabetes and Hypertension complicates things. It is alot of unknown factors that they have to make concessions for when I go through surgery....alot of unknown factors to consider.
Nevertheless, looking back, me and my mom stayed in Chapel Hill for three days of testing. She has been by my side since the beginning. During my stay, I was hospitalized overnight because of a low blood sugar. After complaining several weeks of a swollen abdomen, swollen feet, and shortness of breath, the low blood sugar is why I was dmitted.
During this emergency room visit, I was diagnosed with Ascites. I had Ascites or fluid build up of the abdomen where my normal weight was 142, but my weight upon admittance was 172. After the emergency was over, my mother told me that I woke in the middle of the night, and did not know where I was or who she was. Later, we found out that toxins had built up in my blood because the Liver in its condition does not filter everything. In fact, some medications like insulin can set in the body for some time and then all at once it dumps into the blood stream causing a low blood augar that's often dangerously low.
The doctors say that as the disease progresses that this phenomena can happen and the temporary lapse in memory presents almost like Alzheimer's or Parkinson's. Scary to know that toxins can cause me to forget where I am, or cause me to forget loved ones, to talk out of my head, or affect my mood. This is not something I planned for my life.
After this visit, the plan was to always have someone with me. Now, the plan has evolved into having identification on me at all times, no driving, having a diabetic alert bracelet in case I can not talk and I am having a low blood sugar. All the "Unknown Factors" terrify me....can not wait until I get a new Liver to remove some of the fear from my life and live my life with some freedom. Thankful for my family and their support, especially them traveling back and forth with me sometimes 5 hours away, the hospitalizations, and the emergency room visits. I have learned alot of things on this journey and the main thing is that everyone needs someone, everyone needs family, friends, and community....a strong support system to exist, evolve and live this life.
Loading Images
May you all find the help you need--and ALWAYS keep fighting to LIVE! Special wishes today for Pamela Johnson.
Rebecca Peffer
I wish you all the best in your planned liver transplant and hopefully a great recovery. Keep the faith and your positive attitude, it makes all the difference!
Doug Green
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Pamela D Johnson
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
Subscribe to this campaign to receive updates.
Accessibility for all: Helping people connect with who and what matters most
Building leading-edge mobility products
One of the largest mobility dealers in the U.S.
Consult with specially-trained pharmacists, get your medications for pickup or delivery and more
All news, and all that matters to you
Your first step to optimized communications
The event for the disability community
Born to connect, empower and inspire the rare disease community.
A mobility dealer for wheelchair accessible vehicles and adaptive equipment