PLEASE HELP SANDYE BREATHE EASIER
Sandye is a 45-year-old woman who is in need of a double-lung transplant. For half her life, she has been living with Pulmonary Hypertension (PH), a rare progressive and incurable lung disease that is caused by the narrowing of the blood vessels and arteries leading into the lungs. This will worsen and eventually lead to heart failure. By the time Sandye was officially diagnosed (February 2, 1996), she was well past the point of early diagnosis already. The heart failure was already clearly apparent, and the PH was to the point where she immediately was put on Oxygen therapy 24/7/365, which she still remains on today. While there are drug therapies out there to help prolong and slightly improve her quality of life, a double-lung transplant is her only hope.
Sandye grew up in the North Huntingdon area (just outside Pittsburgh, PA), and graduated from Norwin High School in 1992. She dedicated herself to helping others whenever possible. While working as a sales associate and attending college she received the devastating diagnosis of PPH. With just 4 classes left before getting her degree, life as she knew it came to an end. The years of waiting for a transplant began.
Over these many years, she has become engaged and received her Associates degree, trying her best to live a life as full and rich and rewarding as her illness will allow. The biggest obstacle she faces in her fight against PH, is the medical expenses not covered by Medicare including insurance premiums, medication co-pays, and oxygen supplies just to name a few.
To help with the financial burden of Sandye’s uninsured medical expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent of the law, are held by Help Hope Live in the Mid-Atlantic Lung Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider a contribution.
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Thank you for your prayers, support and generosity. Keep an eye on this Help Hope Live campaign page because we will be planning some fundraising events soon and posting updates regularly.
Dawn (Sandye’s best friend) 412-651-2503
October 27, 2020
I am a person that’s in the high risk group. I have a compromised immune system. A simple cold could turn into pneumonia overnight. Because of how dangerous it would be if I were to get sick, I always go into a self-induced hibernation from October to May each year. I stay home as much as I can. I avoid people whenever possible. When I do HAVE to go out, I have always worn a mask to protect myself. In the past, I’ve continued to celebrate and enjoy the holidays with friends & family. In 2019, starting on October 1st as usual, my self-induced hibernation began. I have plenty to do to keep me sane, busy, and happy. Just because I’m constantly battling PAH, doesn’t mean everyday life stops for me. There’s still bills to pay, dirty dishes to wash, groceries to buy…all the things everybody has to do. I had no idea that my October 1, 2019 hibernation wouldn’t be over until May 1, 2021. I have gone to a few stores this year in July & September. I still had to get my bloodwork drawn at least once every month no matter what. I tried home draws and the bloodwork results were always inaccurate, and then my blood thinner dosage would be adjusted according to those inaccurate results. I found this out purely by accident. Thank God I did! So I have been out, and have been as careful as possible. I am happy to say that I have been and still remain cold, flu, virus free. I never get the flu shot because I found that when I did, I got sick more often and much worse during those winters compared to when I didn’t get the flu shot and was more vigilant about avoiding people. I do what’s comfortable for me, and it’s been working so far. So, what have I been up to in 2020? Reading, 106 books so far this year, mostly cozy mysteries! Napping almost every day. Battling PH is exhausting. Enjoying TV shows & movies, my latest favorite is After Life, a Netflix original series created by, written by, and starring Ricky Gervais (rough language, great show though). Cross stitching small designs for charity, no reason not to give back if I’m able to, right?! Finally going through drawers, closets, etc. leaving me with a pile of items to be donated somewhere at some point. Venturing into the world of online grocery shopping and curbside pickups, and contactless food delivery when ordering in. Word puzzles. Board games with the love of my life when we get time together. Watching the antics of the small animals outside my living room window. And most recently…watching the unbelievable spectacle(s) surrounding the 2020 Presidential election. 2020 may be an odd year, it sure hasn’t been boring! That’s what I’ve been up to. I wish everyone well. I hope you are all safe and healthy. Please be respectful, try to stay positive, and always remember…You’re stronger than most, better than none.
January 7, 2020
January 7, 2020 ~~ I can’t tell you how exhausting and frustrating it is dealing with PH every single day. I don’t get a day off from it. I don’t get a break of any kind. Every single moment of every single day, I’m PHighting to survive. The little daily things everyone has to deal with; i.e. refilling prescriptions, paying regular bills such as electricity and phone…none of that ends. You have to deal with your PH symptoms and all of that as well. PH doesn’t rest. I don’t sleep and have constant headaches every day. The PH meds I have to take (2 separate meds a total of 3 times a day) cause fatigue and headaches. PH causes insomnia and headaches. It never ends. And I’ve been doing this for almost 24 years now. What keeps me going? Unconditional love and support from my very dear friends and family. Without them, I seriously don’t think I’d be here. They are the reason I PHight as hard as I do. Every single day I struggle, and every single day when it’s quiet at night and I’m laying awake in the wee hours of the morning, I thank God that I am still able to PHight and to be here to spend time and share my life with those people. They know who they are because I make sure to tell them as often as I can how I feel about them. Just in case any of them read this (which they probably will) I love you all and I’m so beyond Blessed and grateful to have you in my life! Thank you all. And for those of you who I haven’t met personally who may be thinking of donating to my page, thank you as well. It means a lot to me that you took the time to read what’s on my campaign page, and even thought of donating to my fund! Hugs and Happy New Year! Let’s hope 2020 is the start of a wonderful new decade for us all!
July 11, 2017
I know that I haven’t posted many updates here. Frankly, the emotional roller coaster, and overwhelming fatigue that accompanies most chronic illnesses is taking its toll on me. I just haven’t been doing nearly as much online as I used to.
I did have a great short vacation over the 4th of July holiday. I got to celebrate in the quiet peaceful albeit low elevation mountains! It was nice to hear birds chirping instead of cars and sirens. I forgot how calming that can be!
Today, I received notification that my monthly premium for my Medicare supplemental insurance will be going up starting in August of this year. It is now going to be $262.89 a month for the supplemental insurance. I have been trying to cover my monthly rent, my supplemental insurance, and my electric bill all on my own. I just can’t anymore. Your donations to my fundraising campaign here at Help Hope Live will help me to pay for part of these expenses. I obviously need my supplemental insurance in order to continue with my monthly bloodwork and regularly scheduled doctor’s visits and medication co-pays when I have them. So, as you can see the donations made to my fundraising campaign do help me a lot, and for that I am beyond grateful. To those who have donated in my honor, as well as those who lend encouragement and emotional support, I thank you with all my heart as “broken” as it may be.
February 8, 2017
I know that I have not posted an update in a very long time. I apologize for that. Life got the better of me, and this time the outside stress was a little tougher to bounce back from. In true Sandye-style though, I have gone through all of the stages of emotional healing that I needed to go through. My process is complete and I’m back to being me!!
I have just celebrated the 21st Anniversary of my PH diagnosis. Why do I celebrate such an awful diagnosis? I celebrate not the diagnosis itself. I celebrate my strength, my ability to overcome the constant obstacles that PH throws at me. I celebrate my courage. I celebrate the friends, family, and the PHriends (other people dealing with the same horrible disease) that have either stuck by me, or have joined my journey along the way. I celebrate the simple fact that..I…AM…STILL…HERE. That last reason is reason enough all on its own. I’m here. I’m here to laugh and talk with friends. I’m here to love family and friends who have become family. I’m here to experience the best, the worst, the good, the bad, the funny, the tragic, and well just….life. I wasn’t supposed to be here. I am though, and I am thankful for that every single day.
My word of advice to everyone out there; the healthy, the sick, the poor, the rich, the angry, the happy, whoever you are, whatever you feel, whatever you believe….listen up because this is important; Life is NOT a privilege or entitlement. Life is NOT guaranteed to last to a ripe old age. Life will give you back what you put into it. No matter what your situation is now, or what it becomes in the future…make the most of every single second as best you can. Have no regrets. Do what’s right no matter how hard “right” might be. Until next time…..Live Well and Breathe Easy. <3
May 12, 2016
ANNOUNCEMENT: The fashion show fundraiser that was scheduled for Sunday May 15th 2016 at First United Methodist Church has been officially cancelled. We needed to sell 100 tickets before the fashion show coordinator would agree to follow through with the show, and we did not meet that goal.
Please stay tuned to my patient page here at HelpHOPELive and any further fundraiser events will be listed here as they are planned. I’m sorry for any disappointment or inconvenience this has caused anyone. I have contacted my HelpHOPELive coordinator who assists me with everything here and asked her what to do about refunding people’s money who have purchased tickets to this event. I will post another update when I have more informaiton.
September 29, 2015
I’ve had two weeks packed with activity. I can’t remember what I’ve updated everyone on and what I haven’t at this point. Please bear with me if I repeat anything.
First, I saw my Cardiologist (the fearless leader of my transplant team right now) on Thursday, September 17th. After a thorough exam and conversation with him, it was decided that I’ve lost too much weight and need to re-gain a couple pounds. He had originally asked me to lose about 4 pounds to make things easier on my heart. I have Eisenmenger’s Syndrome, which basically is right heart failure. It’s part of what led to the Pulmonary Hypertension in my lungs. Anyway, when he saw my weight was down to 100 lbs. even, and heard that I had been having random dizziness (not exactly fun moments), he immediately increased my daily sodium intake limit by 500 mg and told me to make sure I eat full meals including protein. So now my new daily sodium limit is 2500 mg per day and I’ve already gained back those 2 pounds thanks to a vacation I went on last week! It’s extremely tough to monitor your sodium intake when restaurants you only go to once a year don’t have nutrition information available to their patrons. This is something that every single restaurant should make available. There are literally hundreds of thousands of people that need to watch different things for dietary and medical reasons. Just because we’re “sick” doesn’t mean we don’t enjoy eating out like those individuals who enjoy good health. OK, I’m done. Sorry. Back to my positive self!
Doc also said to keep my lasix as is for right now. If my weight fluctuates too much then we’ll explore the possibility of adjusting the lasix and sodium limit again. Until then I check in every so often, weigh myself every day, and keep track of my sodium intake.
Now for a dose of cold hard reality: As of right now we’re not going to move forward with the pre-transplant testing to get me reactivated. However, should my condition worsen throughout the upcoming colder months, I will call my Doctor in Pittsburgh and he will arrange and schedule the pre-transplant testing for Spring 2016. How do I feel about this? To put it simply…confused. I told Doc that while I wasn’t ready for the transplant just yet, I’m frankly sick and tired of being “stuck like this” for so long. Only time will tell I guess…
I am pleased to announce that the Spaghetti Dinner fundraiser organized by some of my very dear friends earlier this month was very successful! I created a photo album with pictures from the event! Please feel free to browse through them when you have a chance! Unfortunately I was unable to attend this event in person. I was there in spirit though and am grateful for all of the hard work, donations, and unconditional love shown for me during the entire process.
As October is quickly approaching, so does my “hibernation time” as I like to call it. I have found that when I get a flu shot and/or pneumonia vaccine, I tend to get sick more often and more severely throughout the winter months. For the last few years I have chosen to NOT get a flu shot or pneumonia vaccine for this reason. My immune system is already compromised and these vaccines just seem to compromise it even more to the point where I can’t fight any infection all winter long. Instead I choose to stay in my apartment and limit my exposure to anyone and everyone as much as I possibly can. By doing this instead of getting 3 or 4 sinus infections throughout the cold/flu season…I tend to get maybe only 1 or 2 at the absolute most. I’ll take being healthier longer any day of the week. That being said, I wish you all the greatest throughout the coming Holiday season. Please be safe and take care of yourselves! Thank you for your continued support and interest in my story! There will be ups and downs along the path, I promise to keep it as positive as I can though! Together we will journey through this PH adventure, and no matter what it may bring, no matter what the final outcome may be….I will be a better person because of all that I have faced, and you would’ve gotten to see the transformation first-hand. Until next time, live well & breathe easy!
July 30, 2015
Why do I love the autumn season so much? On a personal, more emotional level…I love to see the leaves changing into beautiful vivid colors. I love apples and just about anything you can make with them. I love seeing the kids trick-or-treating on Halloween. On a physical/health level though…I don’t have days like this week! Here in Philadelphia, PA we are under an “Excessive Heat Advisory” for the rest of this week (it’s now Thursday) and probably well into the coming week as well. This means that the temperature will be no less than 90 degrees, and the humidity will be extremely high. In other words, I can’t even step out into the hallway of my apartment for 2 seconds, let alone go out anywhere. Yes the car I’m usually in has air conditioning that works. Yes the stores/restaurants I usually go to all have air conditioning that work. However, if I literally cannot breathe to get into that car, or to get from the car into those stores/restaurants, then that simply means I DON’T GO OUT! The AC is on in my apartment right now as we speak and it’s hard for me to breathe. I either have to turn it down to make it even colder in here, or I have to just do the best I can to deal with it as is. Yes I’m fully capable of turning the AC back to make it colder. What happens then? My electric bill (which I’m fully responsible for paying, and which won’t be covered by transplant fund here) will sky rocket even more than the $34 jump I had last month. It will be so cold in here, that I will literally have to be under my winter blanket(s) with my winter PJs on. It may come down to doing just that though. Because when you have PH, you do what you have to do to survive!
On another note, I am on liquid oxygen. My doctors prefer I don’t use concentrators. Why? Because with concentrators you don’t get oxygen that’s as pure as you do with liquid oxygen. Not to mention the fact that concentrators pull in the surrounding air and turn it into a purer form of oxygen. Unfortunately the filters in the concentrators don’t filter out ALL the bad stuff in the air. If there are germs, viruses, etc. in the air around that concentrator, guess what? It’s going to pull all of that in as well. I tried being on a concentrator several years ago. I was on it for 3 weeks, I had a sinus infection for 2 of them. This was in the summertime, not during cold/flu season. Nobody around me was sick either. Concentrators and I just don’t get along. Why am I getting into all of this? For the simple reason that heat and humidity make liquid oxygen evaporate at a much faster rate. Granted, having the AC on in my apartment does slow that process down a good bit. I have 3 main tanks and 1 smaller travel tank that I draw off of when I’m home. 2 of those tanks are completely empty as I write this. The last bigger tank, and the 1 smaller travel tank both have less than 1/4 tank left. I’m hoping that I can stretch that out (without compromising my health by turning down the liter flow) into tomorrow, since tomorrow is when my regularly scheduled delivery of oxygen is. Just another day in the life of a PH patient. So when you’re sitting there complaining about the heat as you go about your daily routine, or sit beside the pool….stop and think about those of us that are physically unable to run our errands, sit by the pool, or even do simple small daily chores in our own homes because of that heat. Be grateful for your health everybody. Be grateful you can physically do whatever it is you do every day. People like myself don’t have that luxury. Don’t take it for granted! Until next time, Live Well & Breathe Easy!
July 28, 2015
Hi everyone! I know I haven’t posted an update for awhile, and I apologize for that. I recently had to make the trip out to Pittsburgh (I currently live in Philadelphia) to see my Cardiologist, and have a Transthoracic Echocardiogram. I believe I posted an update as to the outcome of that appointment/test.
This update is to show you how your donations help me pay for medical bills that I didn’t even know I’d be getting. Apparently Medicare only approves one Echocardiogram a year per patient. My last one was in June, so because I went 1 month too early, Medicare is only covering a portion of that exam and test this time around. Lesson learned for next year that’s for sure! Anyway, I recieved a bill for just over $76, which was the part that Medicare wouldn’t pay for. Because Medicare wouldn’t pay for this part, my supplemental insurance wouldn’t pay for it either. I immediately printed, filled out, and calculated all allowable expenses connected with this trip and mailed it in to HelpHOPELive. I haven’t heard back from anyone yet as to whether or not all requested expenses were approved although I don’t foresee any problems.
You are allowed to submit any medical bills related to your condition/transplant. I therefore submitted a copy of the $76 bill for the Echo & Exam. You are also allowed to request a refund for any parking fees, as well as a sum of money to cover all travel expenses (gas, tolls, etc.) to be calculated at a certain rate. Because this trip was strictly to see the doctor, I did ask for a refund for travel expenses, however I did not ask for a refund for the Turnpike tolls or parking at the Hospital the day of my visit.
The total came to a little over $200 including everything I requested. I’m not sure if everything will be approved, at the very least I will be able to get back the money for the test/exam! I wanted you to see that your donations do make a difference! I do truly appreciate them! I don’t know where I’d be without them.
Another more personal update will be posted in a few days. Life is trying to knock me down again (personally this time) and I’m still battling to keep from falling down. Until next time, live well & breathe easy!
July 12, 2015
I had an Transthoracic Echocardiogram (complete with Doppler and sound) done on May 27th of this year. Thanks to cuts in Medicare, it is no longer completely covered. I received a bill in the mail today from the Hospital where the Echo was performed. After receiving payment from both Medicare and my supplemental insurance, I owe $70.39. Not a lot if you compare it to what they tried to bill Medicare initially for the test. However, in my little world, anything over about $25 extra a month is a lot when it has to come out of my own bank account. Why am I telling you this? Because this is what this fund is used for! This is one of the transplant related expenses everyone who donates helps to pay for. I just wanted you all to know that your donations do matter! You do make a difference! Thank you from the bottom of my damaged heart! I send you all much love and many prayers!!
June 26, 2015
I’ve been focusing on a new way of life. It always takes me about a month before it starts to become routine, and at least 2 or 3 weeks before I perfect it. That being said, the first part of my new life was not a personal choice but rather a choice forced upon me because of my health. Thank you PH. If you’ve been following these posts then you know the first part of my new life included both taking a diuretic for the first time ever, and also starting a low sodium diet. Good bye junk food. Yes, I realize eating a lot less junk food is a good thing. Maybe this was God’s way of making me do that because He (and everyone else who’s ever met me) knows I couldn’t have cut out junk food myself. The second part of my new life is exercising on a regular basis, and this time sticking with it for more than 2 months (which is my current record so far). I’m currently on day 3 in a row of either riding the stationary bike or following a workout program on Amazon Prime or Netflix. I ride the bike to strengthen my legs and elevate my heart rate just a little. I do the workout programs to work my heart a little harder and keep my joints limber. I don’t overdo it. I do push myself a little bit because you have to or you won’t make any progress, and I’m not in this for the status quo anymore. The status quo let me down, no more settling. When someone is here with me, I push a little bit harder because they’ll be able to get help if it’s needed. *Knock on wood* *Cross Fingers & Toes*. I’m being smart about this! If I have anything to say about it, this will be my new “norm” and I’ll be just fine….or you know, as fine as PH will let me be. I can regain a little of the control I’ve recently lost. I know I can do it. Since starting this new lifestyle, I’ve gone from 106 lbs. to 101 lbs (as of weighing myself a few moments ago). As I said, I’ve exercised 3 days in a row (my right knee is totally hating me as I type this). I think I’m on the right track! Again thank you to all of those who have made donations to my fund. Thank you to those of you who have been my fans, and been cheering me on every step of the way! Thank you to the new members of my support system. I cherish you all! Until next time, Live Well & Breathe Easy!
June 16, 2015
I just recently took a small vacation. I was thankful to escape to the peace and quiet of the PA mountains. It’s an inexpensive trip (which a close friend paid for) because I had somewhere to stay that didn’t cost anything! I was able to relax, work on my most current cross stitch project, and enjoy some classic TV show episodes (mostly Columbo and Designing Women).
Although I was able to relax and enjoy myself, the humidity on my 2nd day there was pretty high. No matter what I did, it was really hard to breathe. The slightly higher elevation (Doc doesn’t want me to go above 2500 feet) didn’t help things either. All in all though, I was still grateful for a brief get-away!
I hope that everyone is enjoying their summer so far! Stay safe in the sun and heat, pig out at all those cookouts, and roast lots of marshmallows on those campfires! And most importantly…..live well & breathe easy!
June 9, 2015
I’ve been on the Furosemide for just under 2 months. I’ve been very dilligent in keeping up with my low sodium diet, and weighing myself every day. I’ve stayed under 2000 mg of sodium every single day except 2. Those 2 days I only went over because I went out to eat unexpectedly. It’s hard to stay under your sodium limit when eating in restaurants instead of at home. I love to go out to eat! I just have to make sure I allow for it during the day though. A new adaptation to get used to. That’s all. No big deal! That’s what this PHight is all about after all…learning to adapt so that I can survive.
I’ve been thinking about the double-lung transplant a lot this evening. It’s not something I think about often. This latest health setback though has brought it back into the foreground for me, a lot more than it had been. I have tons of mixed feelings about it. Am I ready for it? No. Do I have to have it eventually whether I’m ready or not? Yes. Can I change that fact? No. Am I scared that I won’t be up to the battle afterwards? A little if I’m truly honest. Am I strong enough to survive despite being scared? Yes without a doubt. Does it bother me that someone else has to die before I can live? Yes more often than No. Does it worry me that if they do the Pre-Transplant Testing soon, that they’ll find out that my condition is worse than any of us think? Yes, a little bit. I trust my doctors, they haven’t done testing other than echocardiograms for a few years though, and with me you have to expect the unexpected.
Just wanted to share what was going through my mind tonight. This is part of being a PH patient and part of the transplant journey. Welcome to my life….every. single. day.
Live Well and Breathe Easy <3
May 30, 2015
Health update & new gameplan as of Thursday, May 28, 2015… my Cardiologist increased my Lasix to 40 mg a day. I have flexibility with this new dose. I can take it all at once or split it up into two doses. I have my kidney function and potassium levels checked when I have my other blood work done. I stay on the low sodium diet. I weigh myself every day. If I have any additional swelling, if I have any unusual dizziness, if I drop below 100 lbs I have to call right away so they can address the issue. I see the Cardiologist again in September. We’ll take it from there. In the meantime, he’s going to pow wow with the lung people and come up with a reasonable time frame of when to start pre-transplant testing. It takes 2-3 years, and it will take longer to find a donor because I’m O+ blood type. We are not ready to do the transplant yet, it may be time to start the process so things are in place when it comes time to start seriously looking for a donor again. Thanks to everyone who is rooting for me! I appreciate the help, prayers, donations, and genuine friendship
May 16, 2015
Latest update on my most recent health setback…I’ve continued to take the Furosemide every day. I am down 3 lbs as of a few days ago. I had some bloodwork done on May 12th. It included my regular 4 tests: PT/INR to test my clotting factor to make sure my blood thinner med is doing its thing properly, Liver Function Tests to make sure the Tracleer isn’t making it spike too high, Blood Count to make sure I don’t need therapeutic phlebotomies again, and a Pregnancy test which is required by Medicare to prove I’m NOT pregnant due to the risk to the fetus from the Tracleer. It also included a test to check my potassium levels as Furosemide is known to deplete potassium, and if you’re potassium dips too low it will cause heart palpitations among other serious issues. That being said, luckily my bloodwork came back perfect!! Welcome to my new plateau! Hopefully this one lasts for awhile!! Thank you for following my journey! Live Well & Breathe Easy!
May 2, 2015
I’ve been on Furosemide (generic of Lasix) since this past Wednesday. I already notice a difference. I’ve lost 1 pound so far. I have more energy. I’m sleeping better at night. My breathing is slightly less labored while doing small tasks. I’ll take it!!!
I am beyond grateful to have such a tremendous medical team on my side! Hoping this will the beginning of finding the new plateau for me.
PH patients are on a constant roller coaster. You do well for a period of time, you have a setback that causes you to do not so well, and then you deal with that setback however that has to happen and then you reach your new plateau where you’re doing well again. In the end though, there’s going to be that setback you can’t bounce back from and that’s when the transplant is vital and time is crucial. All of us PH patients are living every single day the best we can, surviving the best we can, and trying to make it to the point where we can have our transplants and live life as a “normal” “healthy” person!!
Live Well & Breathe Easy! Get out and enjoy the fresh air and sunshine if you’ve got it! Every breath you take is a gift!
May 2, 2015
Been on Furosemide (the generic for Lasix) since Wednesday. I am starting to notice a definite difference! I have real energy for the first time in ages! I was able to swap out my summer and winter clothing today (with help of course). I couldn’t have even thought about doing that a week ago! Grateful for a productive day! Grateful for feeling a little better! Live Well and Breathe Easy everyone!
April 29, 2015
I will be calling my Cardiologist today…in a few minutes actually. I had swelling in the outer side of my left ankle yesterday and my breathing all day yesterday was not nearly as good as it should’ve been. Granted I was exhausted from not having slept well the night before. This morning I woke up and was out of out of breath again. The humidity in my apartment was awful. I turned on the AC and now that the apartment is a lot cooler, my breathing is better! All this back and forth, not knowing from one day to the next how my breathing is going to be, and how my legs will feel, etc. is frustrating. The life of a PH patient definitely isn’t an easy one. I’ll keep PHighting though! Take care and have a great day everyone! Don’t forget…live well and breathe easy!
April 28, 2015
It’s 5:20 AM. I can’t sleep. My mind is stuck in the dungeon of despair as I’ve nicknamed it over the last hour. Ever since the swelling in my legs came up about 10 days ago, I can’t get out of this dark funk. Welcome to one of the biggest problems with PH….depression. I’m angry, scared, frustrated, and just plain fed up with this whole disease all at the same time. This is not who I am. I’m the girl who has the set back, says a few curse words, asks what we do about it now that it’s happened, and tackle it and move on. That’s who I am. I can do that forever. I’m great at that….until now. Why is this time all of a sudden different? I have no idea. Being in new PH territory sucks!! I see my Cardiologist on Thursday, May 28th. I have an Echo that same day. My best option between now and then is to pray, lean on the strongest of my friends/family, and conserve my strength (physical, mental, and emotional) so that no matter what the outcome of those two appointments are, I can tackle them with as much strength and bravery as possible. When I first started these updates, I promised myself I’d teach people what it was like to be a PHighter. Well Folks, here it is…the good, the bad, and sometimes the ugly. This is my reality. Sometimes even the strongest ones need someone else to be strong so they can just break down and get the negativity out of their systems. I guess this is one of those times for me. I’ll keep updating. Thank you for sticking with me through this. Remember, no matter what…live well, breathe easy!
April 27, 2015
I haven’t posted any personal updates in a little while, so I feel I owe you all one now. A little more than a week ago, I went to my old hometown for a few days to visit with some dear friends whom I’ve known most of my life. As is the case when I’m on vacation, I go out to eat a lot more than I normally do because it’s simply just easier on me that way. Well, a week ago Saturday night I had some major swelling in my ankles/feet/legs. I was unnerved by it to say the least. My Docs always check for swelling in my legs whenever I have an exam with any of them. This was the first time it had ever happened. I didn’t freak out or panic. I laid down and put my feet up and went to bed for the night. Sunday morning rolled around and the swelling was gone. I got dressed and not long after that I was on my way back to my apartment in Philly. Half way there I had swelling in my left ankle again. I rode the rest of the way with both shoes/socks off. By Monday morning everything was back to normal again. I called my Cardiologist’s office first thing Monday morning. Unfortunately the head nurse (whom I love) couldn’t get back to me until Tuesday morning because she was out of the office. I talked to her Tuesday morning and she showed Doc some pics I had taken of my swollen feet/ankles and talked the situation over with him. Bottom line is this, if I felt I needed to come in early to see him I could’ve gone this week. All I had to do was call this morning and tell her. In the meantime, I was asked to keep track of my weight (because fluctuations from day to day of 3 lbs or more is a sign of water retention), keep my sodium intake to less than 3000 mg a day (sometimes harder than it sounds, sometimes easy as pie), and monitor my feet/legs for swelling and keep track of all of that. Since Tuesday morning I had managed to not only keep my sodium intake below 2000 mg each day, and my weight rarely moved from 105 lbs, I did have some mild swelling in just my left ankle this past Friday night. However, I had gone out to eat with someone Friday evening unexpectedly and the restaurant couldn’t provide any nutritional information on anything they made/served. I did my best guesstimating and I truly just think that with not allowing for restaurant eating throughout the day, and not knowing nutritional values for what I had ordered, it threw my sodium completely off the chart. I’ve been fine ever since, my weight has been consistent and yesterday I even managed to keep my sodium under 1000 mg! I called the head nurse this morning and got her voicemail, beginning to think Mondays might be her regular day off. I told her that I was happy to wait for my previously scheduled appointment on Thursday May 28th. That morning I will have an transthoracic echocardiogram complete with doppler, and an exam with my Cardiologist. I’m keeping a log of everything (weight, salt intake, swelling if any, breathing) and he and I can discuss it at that time. Of course between now and then if anything major comes up, I can call and they will squeeze me in if necessary! I love my medical team! So that’s my news update for now. Remember everyone……Live Well and Breathe Easy!
April 8, 2015
The best resource to learn about Pulmonary Hypertenstion is at the PHAssociation website! They have started a new-ish campaign called PHAware. They are trying to spread the word about this horrible disease all over television and social media! I have recently discovered their YouTube channel found at:
Hopefully this new online campaign will raise awareness even more. A few celebrities have even started to get involved. Kudos to: Michael Buble, Courtney Cox, Jeffrey Hayzlett just to name a few. Maybe now we can actively work towards a cure for this absolutely horrible life-altering disease.
Because in my opinion 2.8 years average life expectancy for anyone diagnosed with Pulmonary Hypertension just isn’t good enough. We’re no longer accepting that number! Let’s work together to change it!
Don’t forget, Laugh A lot, Live Well, and Breathe Easy!
April 2, 2015
A few minutes ago I joined in the Blue Lip Kiss Challenge that was started by a young lady who is also PHighting Pulmonary Hypertension. She wanted to do something to raise PH Awareness as she fights her own personal battle. I admire and commend this young lady for her efforts in bringing this disease on to the social media sites in a unique and fun way. I am now extending this challenge to all of you! Please join us in raising awareness for Pulmonary Hypertension. There’s no cure for it. Patients have to be on oxygen, take very strong meds (often times 2 or 3 different ones of the same type), and can only be helped by having a transplant.
I’m asking everyone who reads this to watch the 2:20 video this brave young lady posted on YouTube: www.youtube.com
Also please visit and post your blue lip photos on her Facebook challenge page found at: www.facebook.com
As I said I did the challenge myself. I pasted my photo you see here on my patient page into a blank Paint window and “colored” my lips blue. I posted it on Twitter and Facebook and will add it to my photo album here as well! I’m not asking you to do anything I haven’t done myself!
Live Well and Breathe Easy!
April 2, 2015
Each month I get a statement from AARP, my prescription insurance coverage provider. It details what medications I got for the month, what AARP paid for, what I paid for in copays, and what Medicare paid for. I need to explain this in a little more detail.
AARP is as I said a prescription insurance coverage provider…one of many. It is backed by Medicare. Why did I then list AARP and Medicare both as paying for my medications? It’s simple. Being on Social Security Disability and unable to work, my annual income is well below the poverty level. Because of my low income, I qualify for what’s called Extra Care Help through Medicare. This basically means that while AARP is my primary coverage provider for my prescription medications, Medicare covers what AARP does not after I’ve paid whatever copay is due that I’m personally responsible for.
I promise, I am going somewhere with all of this! I received my statement in the mail yesterday for the month of February. I wanted to give you an idea of just how much these meds cost. Keep in mind that there is no cure for Pulmonary Hypertension, and these meds are my only option at this time. I feel that I should add this little factoid as well: Between the month of January and February, one of my prescriptions rose in cost by $652. Yes you read that right. Six hundred fifty-two dollars. I should also mention that the only medications listed here are the ones that I take for my heart/lung issues. They are my transplant related prescriptions, and the only ones that my funds here at helpHOPElive would help to pay for That being said, here we go:
DIGOXIN–AARP paid $87.46–I paid $2–Medicare paid $0
WARFARIN (blood thinner)–AARP paid $37.13–I paid $2–Medicare paid $0
TRACLEER (lowers BP in lungs)–AARP paid $4,202.77–I paid $6.60–Medicare paid $4,037.68
AMOXICILLIN (have to take it before all dental work, get 4 pills per refill)–AARP wouldn’t cover it–I paid $0–Medicare paid $2.46
ADCIRCA (lowers BP in lungs, Tracleer alone isn’t enough for me anymore, this is the one that went up $652 in just one month)–AARP $2,268.28–I paid $0–Medicare paid $119.38
Total for February 2015–AARP paid $6,595.64–I paid $10.60–Medicare paid $4,159.52
So far for the first two months of 2015, my transplant related prescription costs have reached a combined total of $13,153.42! My personal responsibility for the year so far was $17.20.
I just wanted to shed a little light on how much the medications cost for me. I do realize that what I pay out-of-pocket is nothing compared to what the medications actually cost. A few years ago I had no insurance coverage at all for an entire month. If anything like that should happen again (It was unexpected and totally devastated me), the total amounts is what I would have to come up with if I wanted to continue to take these life-saving medications. Please don’t misunderstand, I’m not someone who is pessimistic and always looking at the glass as being half-empty and about to break. However, I’m not one to ignore reality until bites me on the rearend either. If I lost all insurance coverage for an entire month once before, it could happen again. I need to be prepared for this because there is no way I’d come up with this kind of money on my own.
March 14, 2015
After a bitterly cold winter with freezing temperatures, and lots of windy days…I finally got out of my apartment for more than an hour or two!! I had gone out in early February for about an hour. I had gone out for about an hour at the end of February. Other than those two days, I was inside my apartment for the entire winter.
Yesterday was warmer (near 60 in Philadelphia), and the sun was bright! It was good to be out. The wind was wicked so I had to have someone drop me off and pick me up at the door whenever we stopped anywhere and even with that, I had a lot of difficulty walking in the wind. It took my breath away. If you’ve never tried to walk when you weren’t able to inhale at all, I’m here to tell you it’s not a fun adventure!
I managed to get my monthly bloodwork taken care of. Why don’t I have a visiting nurse come to my apartment and do it for me? Because I tried that and she never handled the vials properly and my PT/INR (how fast my blood clots) was always off. The Anticoagulation Services (the people who monitor my bloodthinner medication) were adjusting my Warfarin (generic of coumadin) every 2 weeks and I was getting it redrawn every 2 weeks. After having 4 blood tests in 2 months time, I cancelled the home draws and started going to a nearby hospital to have it done again. It’s been right ever since!
As Sophia on The Golden Girls would say though, I digress! I did a little bit of shopping at WalMart, with much help from my future In-Laws thankfully. Got my bloodwork done as I mentioned. We went out to breakfast…one of my favorite things to do! I could definitely tell I had been hibernating all winter though. My breathing is horrendous. It’s even scaring me and I’m used to it after dealing with it for 19 years. I know I have to suck it up as they say and start exercising. It’ll be slow going at first. I’m hoping I’ll be able to improve my breathing by the time I see my cardiologist in Pittsburgh in late May! Wish me luck everyone! I’m going to need it!
February 16, 2015
I recently discovered a song which I am falling in love with! It’s performed by an amazing woman who is also fighting PH, just like I am! I wanted to share this song with all of you! It’s inspiring…I hope you enjoy it as much I do!
January 22, 2015
OK, so I now have 4 doses of the Doxycycline Hyclate left….and I’m NOT taking them. I know you’re supposed to finish all antibiotics. Believe me every other time I have finished my prescribed antibiotics completely without hesitation or question. This time though, no way. The longer I took this medication, the better my sinus infection got, and now it seems to be gone completely. It did do it’s job, which I’m thankful for. However, The better the sinus infection symptoms got, the worse the side effects for the Doxy. got. Today I had absolutely no signs of the sinus issues, great! Earlier this afternoon, I had gone to the bathroom and was totally fine. Just the minor dizziness & headache which is common with the Doxy. Everything was going well, and up to this point the dizziness & headache caused by the Doxy. were annoying but manageable. I had every intention of finishing the med at this point. On my way back down the hall (heading back to the living room), I suddenly got really warm, really super dizzy, and really shaky and weak. It hit me out of the blue. Being hypoglycemic I assumed I hadn’t eaten enough. I did have 3/4 of a turkey, salami, & cheese sandwich, and a full baked potato with butter & salt on it. I also napped twice. Despite all of that, I almost collapsed and couldn’t figure out what was causing it. I tried eating fruit, didn’t help. I had a single serving packet of raw sugar trying to bring my levels up, that slowed the shaking down a bit, didn’t completely stop it. I had a mug of orange juice (organic, no preservatives or anything). That helped a little more. The dizziness was still horrible. I then had some pizza and some baby carrots. I laid back down again after eating that and when I woke up an hour later, I had a raging headache. The dizziness was gone. The shakiness was gone. Neither has been back since. I seriously think the Doxy. was wiping out too much of the good stuff along with the bad. I’m going to quit the Doxy with 4 doses left, and if the sinus stuff starts back up, I’ll have a little visit with my Doc again. The fun & excitement of being a PHer…it’s never dull.
January 7, 2015
What is it like to be fighting PH and ending up with some type of other sickness at the same time? It’s officially day 8 of being on antibiotics. While I’m definitely not 100% better yet, there is definite improvement. I’m feeling so run-down right now. As a PH patient, your body’s natural defenses kick on automatically the minute the disease shows up. In the easiest terms I can come up with, this is what’s going on; The blood pressure in your lungs is elevated. Because of this it becomes hard to breathe, no matter what you’re doing (even just sitting still). Because of this your body realizes you’re not getting enough oxygen and starts making more red blood cells. The red blood cells carry oxygen throughout your body. It’s your body’s way of trying to heal itself, a defense mechanism if you will. So this is going on 24/7/365 even after you’re put on PH meds. The battle doesn’t stop. In the meantime, you end up catching some type of virus whether it’s cold/flu/sinus doesn’t matter. Your body is already battling hard and now it has to fight off the infection as well as the PH. See, your body doesn’t realize that the PH battle is a losing one. So now you’ve got your body fighting 2 separate things at the same time. Please don’t misunderstand, the antibiotics do help fight off the viral infection. The PH med(s) do help make the battle easier on your body. It’s still exhausting though. My nose is so stuffy that the oxygen isn’t completely getting through. Two of my fingers on each hand are blue from lack of oxygen. Getting up to walk to the bathroom (less than 50 feet away from where I normally sit) and back gets me so out-of-breath that I get dizzy. At that point I have to sit calmly and work at not panicking as my chest tightens up and my breathing becomes fast and shallow. Deep breaths are never an option. The pressure in my sinuses is still bad enough to cause me to have a constant headache, as well as having pressure building up in my ears now too which wasn’t there initially. I cannot take anything with ibuprofen or a decongestant or aspirin in it. Those products don’t play well with my PH meds. So I’m forced to sit and wait it out as the antibiotics do their thing. I’m sleeping a lot. Because I’m sleeping a lot, I no longer have any clue what day it is. I have no idea what the weather is like unless I check online sites. Being winter though with colder temperatures, this is more of a good point rather than a pain in the rearend!! I haven’t been out of my apartment since I went to the doctor’s for the sinus infection on New Years Eve. I’ve only seen my Fiance since that time as well. You do everything you can to stay positive and to keep an upbeat feeling going no matter what. When you’re down though, you’re DOWN. I know I’ll get better at some point. There’s already been some improvement.. I just wanted to give you a little insight of what it’s like for a PH patient to have a viral infection as well as the PH. I know this isn’t the most cheery of posts that I’ll put up in 2015. However, this is reality. If I’m going to give you a glimpse of what it’s like to have Primary Pulmonary Hypertension, I have to post about both the good and the bad. That’s just how it is. Thank you for following me on my journey! Better days will be here soon! I know it! Until then, remember….live well and breathe easy!
January 5, 2015
I’ve been fighting a sinus infection since New Years Eve. I’m just now starting to feel human again. However, because I have breathing issues to begin with, and have been all stuffed up for about a week now…my breathing ability has greatly declined. It takes me forever to do anything because I have to keep stopping to catch my breath. Welcome to the life of a PHer (that’s what those of dealing with Pulmonary Hypertension call ourselves sometimes). This too shall pass though! Just biding my time because when I am completely over this stubborn bug, I’ll be able to live my “normal” life once again!! Just wanted to give you all a quick update! Thanks for sticking with me on this ever-changing journey!
January 1, 2015
HAPPY NEW YEAR to everyone! I hope you celebrated safely and with lots of good times shared with loved ones!
Unfortunately for me, 2015 is starting off with a sinus infection. I’ve been living like a hermit basically since early October. Being a transplant patient, and having a compromised immune system, I have to be very careful about staying healthy. I wash my hands constantly. I’ve gone out to eat 2 times since October, both times asking to be seated as far away from other patrons as possible. I’ve gone into a grocery store 2 times since early October, both times very early in the morning before the stores were crowded and pretty much had the whole store to myself and my Fiance who was helping me. Just goes to show you that no matter how careful you are, germs are everywhere!
So 2014 may have gotten the last word, it lost the fight though ’cause I’m still here and I’m taking my antibiotics and next week I’ll get to start my new year happier and healthier!
For right now though, I’m living on scrambled eggs and noodle soup (doesn’t hurt my sore throat as much), and watching movies so I’m a happy girl despite being sick! It’s all about perspective!
I wish all of you happy times, good health, and lots of wonderful memory-making times in 2015!
Take care and don’t forget….live well and breathe easy!
December 29, 2014
Two of my dearest friends just created a new page on Facebook. We’re trying to create a social media page that everyone interested can access for easier availability. This page has a link to my patient page here at HelpHOPELive, as well as updates, upcoming events once they’re planned, basically anything health-related. I just wanted to share the link here for those that might be interested! Thanks for checking it out and remember; Live Well and Breathe Easy!
Photo Galleries (1)
February 4, 2017
Love you bunches, Girlfriend!!! Keep kicking this thing's butt! I fully expect to see you in the group nursing home (raising all kinds of hell) when we are in our 90s!
Amy Bourne Joy
June 10, 2015
Big Hugs with Love and lots of Smiles and Sunshine all around for you Sandye!!
Dorey (Stabile) McCarron
October 17, 2008
Hi Sandye. I hope you''re doing well. I just made a contribution to help you out. I hope you raise alot.
Missi Thomas, North Huntingdon, PA
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