New Day, New Doctor

Okay everybody...here's the latest!

(Better grab a snack or a beverage because it's a long one!)

I finally found a specialist locally who realizes the importance of getting me medically cleared and put on the transplant list! I had my first appointment yesterday and now we are just awaiting results so that he can either write his letter clearing me definitively or I'll have to have another preventative medical procedure and then he can clear me to be wait listed. Either way...it's progress! The last doctor I saw for the very same clearance delayed me for 2 months without an explanation (other than she was NEVER in the office when I called) which was the very reason that I contacted the News-Press about my plight in the first place. As a medical assistant myself I know that patient care should ALWAYS come first especially when concerning situations like this that require immediate attention. However, this particular physician obviously felt otherwise and her lackadaisical attempt at providing medical care has cost me dearly.

With an average of 22 people being added to the transplant list daily, her delay resulted in approximately 1320 people being added to the list ahead of me and that number grows by each passing day. I had everything but this clearance in place and my coordinator was prepared to take my case to the medical board for approval (which can take up to another 2 weeks after receipt of said clearance) but she failed to do her job. When Melanie from the News-Press contacted her to find out why she was not returning my calls nor had she even been in contact with the transplant center, she immediately got defensive and called me irate regarding being contacted by the media and then she proceeded to discharge me from her practice. Real professional, right? That brings me to where I am today, with a new doctor and paying for the entire exam out of pocket because Medicare has already been billed once for this exam through her office and they will not pay for another.

This is why I speak up. I know that I am not the only patient who has had to deal with substandard care as I have seen it myself in medical offices I have worked in before. Patients are often treated like financial assets rather than people. They come into the office expecting to receive an adequate amount of time with the doctor to discuss their concerns but instead are often rushed out in order to increase the amount of patients seen in a day. Sadly, more patients "treated" = more money in their pockets. It's unfortunate the medicine has become such big business because I remember when doctors actually cared about their patients and formed long-standing relationships with them. Now personalized patient care has become non-existent and instead it has been replaced with an army of emotionless zombies who are there for a paycheck.

THIS IS WHY WE AS PATIENTS HAVE TO ADVOCATE FOR OURSELVES! We are paying for a service therefore we are entitled to a certain level of quality and satisfaction with said service. Do not be afraid to speak up, get a second opinion, or change doctors altogether. The field of medicine needs to return to a focus on the diagnosis and treatment of the individual rather than what it has evolved to which is the fleecing of patients pockets and insurance benefits. With all that being said, my new doctor appears to have the qualities of a great medical provider and I am praying that he does exactly what he has promised which will result in me getting on that wait list within the next couple of weeks. Lastly, I wish that I could give each and every one of you a great big hug for all of the support, kind words, and AMAZINGLY GENEROUS donations! My journey is just one of the many who travel this same road that I am on. I am truly grateful for each and every one of you. My dream is to establish a non-profit advocacy and fundraising organization of my own so that no patient is left behind and I am currently seeking out interested parties to join me on this wonderful project as I know nothing about starting a non-profit or even building a website without the help of GoDaddy but I am eager and willing to learn!

So in closing, thank you again to all of you who are following my story and if you happen to see me out and about don't be shy! Come on up, introduce yourself (just so it's not weird lol), and get yourself a big ole hug!!

Love, blessings, and my eternal gratitude,

Mel

The Kindness of Strangers

One thing I have been blessed enough to learn in living with Chronic Kidney Disease is to see the good in things. While this is not always easy, I think that many of us in everyday life get so caught up in our activities and stresses that we tend to overlook the little stuff that makes this world such an amazing place to exist. When someone with a chronic illness wakes up in the morning most often they are immediately thankful. We've been blessed with yet one more day to share ourselves with the world! While those of you who have circumstances in your life that make you unhappy may wake up angry or resentful, not eager to get out of bed and greet this brand new baby day that you have been gifted. Your eyes did not open on their own this morning my friends, you were part of God's plan for the day and so you were awoken, you did not simply "wake up" on accident or of your own will. So this is your gift, and what will you do with it?


As many of you know I have been raising money to qualify for placement on the national wait list for a donor kidney. Because of my 80/20 insurance coverage (Medicare covers 80% and I am responsible for 20%) and the fact that I do not qualify for state Medicaid coverage until I pay $1314 monthly out of pocket, I was given an exact figure that I had to have in an account to prove that I would have AT LEAST 6 months of post transplant expenses covered because I am not married, I have no assets, and I have no other means of financial support. This figure also includes the $4700 "doughnut hole" in my prescription coverage that I will also have to pay prior to Humana kicking in and covering my necessary immunosuppressive medication. Without this medication, the kidney will reject and the surgery would have been for nothing so it is IMPERATIVE that I am able to maintain taking this medication for the rest of my life, or the life of the transplant itself. After adding together all of these figures, the price on my head was $12,584.00 That was the exact amount that my life is worth to the insurance companies and without this money I can and have been held off of the national wait list.

During the period of time that has elapsed since beginning the testing and evaluation process and raising these funds just about 5,280 people have been added to the list ahead of me on a list of over 123,000 people all waiting for the same thing, the gift of life. You may be wondering how I get this figure and I will be happy to explain. You see, an average of 22 people are added to the list each day and I began my evaluation with Tampa General on May 11, 2015 which was just over 8 months ago or approximately 240 days and with 22 people added daily that is how I arrive at the figure. Now mind you that is merely an estimate because there is also another 10 people or so each day who lose their battle while waiting but every 10 minutes another name is added to replace them. The shortage of available organs for those who are waiting to live has now become an epidemic leaving people like me to take our stories to the media to encourage more living donors to come forward and to educate more people on the importance of registering to be an organ donor in the event of their death. Educating and encouraging those who are not registered to sign up has now become a passion of mine. I have joined forces with two organizations to both recruit registrants and to help spread the word about the immediate need for donors and how each and every one of you can help in your own way. Occasionally someone feels especially moved by my story and the true kindness of strangers, the sort that restores your faith in humanity, occurs. Enter David Hernandez and his team over at Trendnation.


On January 27th David Hernandez probably woke up and went about his business like he would any other day. Only this day, he may not have had any idea just how much his seemingly simple act of kindness would touch the lives of two very lucky individuals and inspire many more to do the same. You see, David came across an ad for an item I was selling on e-Bay which just happened to be an item that is produced by an company affiliated with the very company that David works for. Something within him encouraged him to not only purchase the item and message me to keep it for myself, but he also expressed an interest in helping me further after following the link to my website in my e-Bay ad and reading my why I was selling my items to begin with. David not only purchased the item and allowed me to keep it for my own enjoyment, but he took his generosity and kindness a step further by also making a donation to both my fundraising account, and the account of Richard, the featured patient on my website who is also suffering from kidney disease. But David did not stop there! After having just shared with me his very own financial restrictions and how the company itself just had to do come cut backs he rallied a group of coworkers together, shared my story with them, and I received several more donations from the employees of Trend Nation totaling just about $215!! All because one man chose to make a difference. He didn't think about how big or how little his show of support was, he just wanted to do what he could with what he had. Something that we can ALL do right where we are. So I encourage you today to be more like David. Take the gift of this day and share it with the world. If that means calling an old friend and reconnecting just to tell them how much you care, paying for the person's order behind you, volunteering your time to a cause that ignites your passion, or making a contribution to someone you know is in need.


We have all the tools necessary within our reach to influence change and we can make the world great again through the simple act of being kind and loving to one another the way God meant it to be.


Big thanks to Brad & Melanie Howard, Erika Szymanowski, Dan Brownsher, Victor A Perez Arevalo, Luis Villarino, David Hernandez, and the rest of the team over at Trend Nation. And please go check out the array of products that the amazingly generous team at Trend Nation have to offer via their websites below!


Silverhooks
Cuffcrazy
Reusable Revolution
Baglane
Health in Style
Wallet Nation
Crystalcase
Trend Nation

Love, Blessings, & Eternal Gratitude,

Melissa