Special thanks to Amy for putting this list together for #GivingTuesday
Here are some FAQs about HelpHOPELive and why we are using them for our fundraising for Pat's Heart Transplant.
****Why are you fundraising? Don’t you have insurance?
Yes, we absolutely have insurance, and, while I sometimes feel like I spend half my life fighting with them, we are grateful to have insurance with fairly good coverage. But there are a number of transplant-related expenses that are NOT covered by our insurance: Deductibles (In 2015, we met our annual deductible on January 8. We stretched it to February in 2016.) -Copays (Pat sees a lot of specialists at $30 a visit). -Prescription copays (One of Pat’s meds was $60 a month before it became available as a generic. He currently is on 10 different prescriptions. We’ve been told that out of pocket prescription costs in the first year after transplant can average $2,000-3000 per month.) -Gas and parking for visits (It’s 215 miles one way from our house to the Cleveland Clinic, and it costs between $6 and $10 each day to park.) -Meals for me when Pat is in the hospital: We are fortunate enough that our dear friends in the Cleveland area provide us with a place to stay; however, a girl’s gotta eat, and, while there are some delicious options at the Clinic, it’s not exactly cheap.
****How is this different than a GoFundMe page?
Great question! HelpHopeLive is a charitable foundation, not just a fundraising page.
-In order to establish a HHL fundraising page, catastrophic illness or injury is verified by a medical professional. Anyone, well-intentioned or not, can set up a GoFundMe account.
-All contributions are tax deductible. HHL is also able to allow for matching funds from employers, where applicable. -HHL has a lower overhead and processing fee than GoFundMe. They only take 5% of contributions and 7.65% of credit card transactions. At least 92 cents of every dollar donated goes toward Pat’s medical expenses. -HHL pays directly to medical providers. They only pay us reimbursements for meals, gas, or other transplant expenses when verified by receipt or proof of services received. -Because HHL is a foundation that pays directly to medical providers, the contributed funds do not count as income that impacts our taxes or Pat’s eligibility for medical disability.
****You’ve said it could be another year or more until Pat is transplanted. Why are you fundraising now? Because that’s what our social worker, Kay, told us to do! In all seriousness, we were advised to begin fundraising while Pat is doing relatively well so that we don’t have to worry as much about the financial aspects of transplant when a donor heart becomes available. While the funds are available to us now -- and we have requested one reimbursement over the last two years -- we’re pretty committed to leaving them there until we most need them -- when Pat is transplanted.
****Can’t I just give you money?
Well, yes, you can. And we appreciate that, too. Processing your contribution through HHL simply ensures that your donation is tax deductible and that it goes exclusively toward medical and other transplant related expenses. If you give it directly to us, it may end up being used to pay our rent or for other purchases, because we just put it in the bank.
If you have any other questions, please ask and we will be happy to answer or find the answer for you.
Sep 11, 2016
When I had my LVAD implanted on Sept. 11, 2014 I was told I could expect to wait a couple of years for a new heart. It's now been a couple of years and by all indications, I'm not particularly close still. This doesn't upset me, but it hammers home the need for more people to register to be an organ donor.
I continue to be immensely thankful for the technology that has kept me alive for the last two years and I continue to pray for those who are in much more dire need of a new heart than I currently am. I hate knowing that 22 people die each day waiting for a transplant.
I have been doing more and more volunteering to promote organ an tissue donation in the Dayton area and the Greater Cincinnati area. I look for every opportunity to share my story in the hopes that more people will register. There are many myths and many more cop outs that I encounter each time. People need to take the time to explore the facts. ANYONE can be an organ donor. Let the doctors and medical professionals decide what they can and can't use.
This week, it hit the news that former Cincinnati Bengals coach Sam Wyche was in the hospital facing the exact same thing as I was two years ago. They are hoping to wait for a donor heart, but daily they are making the decision if he will need an LVAD.
This had me again reliving my experience two years ago and the incredible whirlwind that occurred. I still can't get over the fact I walked the length of Niagara Falls a week before I was told not to get out of bed. I still don't know if I crashed that quickly or if I was just masking how bad my situation had become so well. Perhaps it was a combination of both.
Also, last week, a local mother was faced with the most difficult decision. Her son was killed as a result of a gunshot wound. He had expressed the desire to be an organ donor and she honored that decision. In talking about it, she hoped she would meet the recipient of her son's organs, particularly his heart and his eyes. It was incredibly touching and it makes me continue to remember the other side of what I am looking forward to. It's such a difficult thing to look forward to receiving my new heart knowing how much pain it will cause to another family who will have to say goodbye to a loved one.
I know it's been a while since I posted. Not much has changed. I am still able to function and come and go as I please for the most part. However, I don't feel quite as good as I did a year ago. I am excited that my trips to Cleveland have lessened. I am now only having to go once every three months.
Sorry if this seems like a random collection of thoughts, because it is.
As always, please pray for Amy and I as well as my future donor. Thank you all so much for your prayers and support.
Jun 09, 2016
Tomorrow, Amy and I will drive to Cleveland once again. Only this time, we are not going to follow up appointments, blood tests or other heart related issues. In fact, there is a strong...
May 10, 2016
Who knows what tomorrow will bring.
After about six months free from Atrial Fibrillation, I received a call last week letting me know that my remote monitor sent my doctor a transmission that...
Apr 01, 2016
Tomorrow I will attempt to tackle my second 5k since I've had my LVAD. I don't run, but if intend to walk. Team Patulence is growing in numbers (we are at 5 who will compete this event to raise...
Feb 23, 2016
Three months. If all goes well (and I don't get "the call) I don't have to make the trip to Cleveland until May.
I had an appointment with Electrophysiology on Monday and I continue to have...
Feb 13, 2016
On Monday, I returned to the Cleveland Clinic for routine follow up appointments with my LVAD team, my cardiologist and my bone doctor. Next Monday, I will return for a routine follow up with my...