9/25/19 UPDATE: Special thanks to Elmbrook Veterinary Clinic for holding a special fundraiser in honor of Stacie.
Thanks to their awesome efforts we have hit over the $20,000
mark! When Stacie could work, she used to work for them. What a wonderful place ~ they care so much! We are super grateful and now are 1/5th of the way there. We can do this with your help!!!
8/16/19 UPDATE: Stacie is settled in California and received her first heart notification!
It was a crazy 4 hours for Stacie last night when she received word from her heart team there was a potential heart for her and they would begin testing it and let her know in about 4 hours if it was a good enough match. While it didn't end up being good enough, what it did do was solidify that we got her to the right place! She has only been in California for 10 days and she already had a potential match. It gives us so much hope that this will happen for her very soon! Thank you all for your generosity! Please keep those donations coming people, Stacie is definitely going to need it. Her miracle heart is just a matter of time now!
UPDATE: Stacie has been accepted to the University of California - San Diego!!
She leaves Tuesday, August 6th and will have her first appointment with her new heart team on Thursday, August 8th. At that time we will know if she is being admitted to the hospital right away or being allowed to stay with a relative for a bit under close monitoring. This is the closest we have been to her new heart! We appreciate your generosity and cannot thank you enough for contributing and sharing Stacie's story!! Your donations have already helped her get the testing done she needed to be accepted to UC-San Diego, you are amazing!
This is my friend Stacie. After battling a type of heart disease most of her life, Stacie needs a new heart. This campaign is to help raise funds to send Stacie and her husband Rob to California where it is believed she can get help and more importantly get her miracle heart. We need your help to pay for travel, accommodations, transportation and out of pocket medical expenses while she and her husband Rob meet a team of doctors at the University of California – San Diego. While there, she will undergo rigorous testing to determine if she’s a candidate for their transplant program. Please consider donating to this very worthy cause – you may just end up saving my dear friend’s life!
This is Stacie’s story. Stacie is 42 years old and was diagnosed with Hypertrophic Cardiomyopathy in 1991 – a heart condition in which the heart muscle is abnormal and can cause electrical problems. This was much to her and her family’s surprise as they had all been tested when Stacie was younger since it runs in the family and were told they didn’t have it. It was after her father died of the same disease in 1991 that Stacie was tested again and found out she, too, would suffer from this disease.
It’s now 2019 and after a 17-hour open heart surgery for a myectomy and aortic valve replacement in 1998 and a dual chamber pacemaker in 2000, Stacie has lived a pretty normal life. In fact, when I met her, I was surprised to learn of the surgeries and all she had been through because she was so full of life, doing normal life things – getting married, buying a house, taking adventures with friends. But in 2014, symptoms began to rear their ugly heads again. The one thing I can say for certain is that Stacie knows her body and thankfully so, as she has been told many times throughout this journey that she was fine, but she wouldn’t accept that as an answer because she knew something was terribly wrong.
She learned in 2015 her instinct was right after reaching out to yet another doctor for another opinion who told her plain and simply that she is and has been in heart failure for some time. At that time, she was fortunate to be hooked up with a great team of doctors who have fought for her in so many ways over the last 3 years.
Stacie has undergone countless procedures, regular testing and who knows how many appointments to see specialists and anyone else who would try to help. But the fact of the matter is that Stacie needs a new heart. And as if that were not a mountain of a challenge, Stacie is also special. She is O+ blood type and has an extraordinary level of antibodies in her blood – 99% to be exact. Those two items make finding a heart for Stacie almost impossible, especially in the Midwest.
In 2017, Stacie’s team of doctors recommended she try a treatment of plasmapheresis, IVIG and chemo to try to reduce the level of antibodies in her blood to hopefully open her up to more organ donor availability. While the first attempt worked, it was short lived and deemed to not work after 3 rounds of treatment, not a result Stacie and husband Rob were hoping for.
What we have learned through Stacie’s heart team is that California hospitals have had much success in this exact same treatment and so they have been fighting to get her there. Stacie has recently contracted an infection in her heart, making this transplant even more urgent, therefore her team fought even harder. Well, it appears they finally have won! Which is why I have started this campaign.
Stacie has been accepted to be tested by the University of California – San Diego (UCSD) where it is believed they can help her. She will be going there as of July 6, 2019 and undergo several days of rigorous testing including one test she truly does not appreciate! After that they will determine if they still feel she is a good candidate for their program.
I cannot even begin to tell you how this news has affected Stacie and her level of hope! The only issue is that while the testing is covered by insurance, Stacie and her husband Rob essentially need to pay for the travel, hotel accommodations, transportation and all their meals. Not to mention there is an out of pocket maximum they need to pay for. I’m asking for your help to send my dear friends to California to hopefully get Stacie on track to receive her miracle heart. No amount is too small but the sooner we can hit the target number, the more relief Stacie will feel so she can focus on the tests ahead.
I’ve thrown a lot of big words at you and different procedures and I would be lying if I told you I understood them all but I can tell you that my friend needs your help. She is currently a level 4 transplant patient, her heart failure symptoms worsen every day and the infection has increased the severity of those symptoms. She cannot work, cannot do many things – even a daily doctor appointment wipes her out. However, the thought of getting closer to her miracle heart is motivating her to make this trip and do whatever she needs to get help from UCSD.
I can’t even begin to thank you enough in advance for donating to this very worthy cause – you could be saving my dear friend’s life! And while Stacie is too modest to ask for help, I know she would tell you how grateful she is for it.
In case you are wondering how we arrived at the fundraising goal, we estimated the California trip expenses to be $5,000 and then there is an out of pocket insurance maximum cost to them of $14,700. Rob has used up all his paid time off this year due to several hospitalizations Stacie has gone through, so there are also lost wages, and we included an amount for any incidentals.
If you are interested in following Stacie’s story, you can follow her personal blog on Facebook: Stacie’s Heart Journey. I encourage you to do so because while I explained quite a few things about Stacie’s journey, there is so very much more to know. And what you will really take away is how brave, optimistic and truly inspiring Stacie is for surviving this condition every day.
Thank you again!Stacie's Heart Journey Facebook Page