Tina had been experiencing shortness of breath for several years, since she had previously been hospitalized with severe pneumonia in the past. This was most evident when climbing stairs or walking up an incline. She was instructed by her doctor to increase exercises & use an inhaler. Unfortunately, this did not seem to be helping.
With symptoms worsening she sought the care of a Pulmonologist which ultimately resulted in a diagnosis of Pulmonary Hypertension (very high blood pressure within the lungs), a rare (terminal) disease that continues to cause lung deterioration, may lead to heart failure & has very few treatment options, depending on the underlying cause.
She was started on some medications that may help to at least slow the progression of the disease, but there basically is no cure.
With PH there are three possible causes, arterial, venous or capillary involvement, the worst case scenario being capillary. Guess what? Hers is caused by the capillaries! (Pulmonary Capillary Hemangiomatosis) This was determined by genetic testing.The only treatment for that is double lung transplant, which brings us where we are today.
Tina has now been transferred to Duke Medical Center, Durham, NC. She has follow-up appointments later this month. If her condition is what is considered "stable" then she goes back every 3 months until her condition is deemed "end-stage respiratory failure". At that point things will move very quickly! We must be ready to move to Durham. During the initial month there we need to attend very specific classes in preparation for transplant. Then she is placed on the transplant list, which could occur anytime so she needs to be "ready" at all times for surgery.
This particular surgery is extensive with a lengthy recovery time of up to a year during which we must stay in Durham! The costs for living there are a major concern.
Since it is unknown when all of this will occur we are in need of having the funds available as soon as possible. Due to requiring high levels of supplemental oxygen Tina is unable to fulfill her current duites at work & has filed for disability. This is a terminal diagnosis so even after transplant she will continue to need expensive medications & care. Due to large medical bills plus a decrease in her income she has immediate financial needs. Her husband is working but may not be able to during part of the time spent in Durham, another financial concern. Her medications are very costly & will continue to be so, ranging from $1500.-$5000. per month on an ongoing basis.
I consider the needs to be urgent & am asking for your help so my beautiful daughter can have the chance to receive her new lungs allowing her to enjoy watching her little grandson grow up, along with so many other of life's joys!
Even though she is only scheduled to be seen at Duke every 3 months she could develop "end-stage respiratory failure" at any time. If that occurs before there is financial means for the surgical deductible along with all of the other extensive financial needs she will not be able to move to Durham for the surgury until funds are available. Please consider helping NOW so we can be ready!
Thank you :-)
- Marcy Mulligan
- Mark Dugle
- Patty Breazeale
- Andrew McKenzie
Organizer and beneficiary
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