I’ve had to start fundraising to help pay for transplant-related expenses (directly caused by my Pulmonary Hypertension, PDA, and Eisenmenger’s Syndrome) that my insurance won’t cover. For those of you familiar with Medicare, you know that Medicare has been cutting what they pay for and how much they pay for the services still covered. Because of this I’m forced to do fundraising to help make ends meet. It’s not my favorite thing to do, however you do what you have to do.
That being said, there’s a restaurant in North Huntingdon, PA (where I grew up and spent the first 29 years of my life) called Arena Sports Grille. The owner of this great restaurant has agreed to donate 15% of the proceedings for an entire week to my Fund being overseen by HelpHOPELive. The event is being held from the time the restaurant opens on Saturday, May 24th all the way through until they close on Sunday, May 30th!!
I don’t ask for anything from my blog followers. I’m asking for something now though. Please share my health-related Facebook page, or this blog with everyone you can. People in the North Huntingdon area the week of May 24th to May 30th can enjoy good food and donate to my fund to help pay for transplant-related expenses at the same time! It’s a win-win situation for everyone! I personally will be there Tuesday night, May 26th with some of my long-time friends.
Ok to explain my latest health setback. Most PH patients end up having to take a diuretic within the first year of being officially diagnosed with Pulmonary Hypertenstion. I, however, being the medical Wonder Woman I am, have avoided it for 19+ years….that is until about a month ago. I was in North Huntingdon visiting old friends and family. One night after having dinner with a very dear friend, I realized I had some severe swelling in both feet, both ankles, and both calves, with the swelling in my left leg being much worse than my right. Edema in a PH patient with 2 heart conditions is dangerous and never a good sign. Because it was a Saturday night, I had to wait until Monday morning to call my Cardiologist. By Tuesday afternoon I was put on Furosemide (the generic form of Lasix). I was also told to start a low sodium diet and to check my weight every single day. Eventhough I only weighed 105 lbs., I was told my Doc wanted me to lose a few lbs to make things easier on my heart. Welcome to the latest setback, Sandye!!
A PH patient’s life is like a roller coaster. When you’re first diagnosed it’s a slow scary tough uphill climb. Everything is new and you don’t understand anything at all. You have to learn so much about so many different things, none of which you ever wanted to know about. Then after trying different medication therapies, going through an enormous amount of doctors appointments, blood draws, and doctors visits, you finally overcome the first setback and find the game plan that works best for you at the time. That’s the dramatic pause at the top of the hill. This dramatic pause can last days, weeks, or years. Nobody knows or can predict how long it will be. You enjoy that dramatic pause for as long as you have it though! You cherish every single moment. You don’t take one single breath for granted. Then, you wake up one morning to find your screaming, going downhill at unimaginable speeds only to bottom out and have to start with medication adjustments, testing, bloodwork, and doctor visits all over again. It’s all ups and downs that never end.
Pulmonary Hypertension is incurable, unpredictable, and luckily also manageable. However, in the end, the only way to save the life of a PH patient is for them to have a transplant. I was diagnosed and put on the list for a double-lung transplant on February 2, 1996. I’m still waiting for that transplant.
As of right now, with the help of a wonderful Cardiologist, and my strength and determination, I’ve been following my new game plan for about 3 1/2 weeks now. I’ve lost 3 pounds. I’ve managed to avoid having any swelling in my legs for that same length of time! Welcome to your new dramatic pause, Sandye! Way to go! (Yes I give myself kudos because this is a rough road and I have to do something to keep up my bravery!)
I thank you all for joining me on this journey!! I also thank you ahead of time for sharing my pages and blogs and helping spread the word! I appreciate it more than words can say!
Live Well & Breathe Easy everyone!