I am a spouse of someone that was diagnosed with Pulmonary Hypertension almost 6 years ago. Although the therapy medications worked and helped for 5 years it came to a point where the medication stopped working for him and the only thing that could save him was a double lung transplant.
He was put on a transplant list at UCSD in August of this year. Just two months later he got the call this past Monday that they had a potential donor. He cried when he heard the news. Two hours later from having had received the call we were at UCSD waiting to hear if the lungs were a match. At 11 :00p.m. that night the doctor came out to let me and his siblings know that the surgery was a go. On October 9, 2012 my husband received a second chance at life without PH. Never give up and always keep the faith.
My mom, Nelda Backus, suffers from Pulmonary Fibrosis and has been kept alive only via medications. In one month, her cost of the medication escalated from $447 to $1894 per month. My dad had always handled anything to do with mom’s medical issues, but we lost him last October. My sister and I were aghast at what the pharmaceutical company had done and didn’t know what to do to help our mother. Please understand that we are talking about a widow who receives $2013 a month in social security benefits. We started calling everyone and anyone we could that might possibly be able to help, only to be turned away time and again because her medication hadn’t been traditionally approved for her illness. Then we were fortunate enough to find out about Caring Voice Coalition.
Caring Voice did everything but stand on their head to ensure that she was able to receive the medication that has kept her with us since 2003. There was a young woman there named Tye who has held our hand through the process and who fought the battle for us! Tye called me to let me know that they would be issuing a grant for my mother that would greatly offset her costs and allow her to be able to buy groceries each month!
Our family owes the Caring Voice a debt of gratitude and we can’t speak highly enough of what they did for our mom. Please get out your checkbook and donate to the cause. They help so many people who are just like my mom, living on a fixed income with no way to generate enough income to pay the rapidly accelerating costs of medicines. I truly believe that they were put in our path by a higher power and that we are blessed to have found them!
Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged caregivers, chronic illness, Coping, Medical Bills, Pulmonary Fibrosis, Pulmonary Hypertension, Transplants | 1 Comment May 31, 2012
It is safe to assume that any and all stages of a chronic illness can induce anxiety, both for patients and for their loved ones. From the diagnosis, to awaiting test results, to doctor visits, to medicine changes; panic is bound to be a prevalent factor. Issues such as these can and should be discussed with your doctor, but what about when you want to take a more natural approach? If, for example, you don’t want to take another medication, or have tried one and it isn’t quite the right fit for you? Or as you may have experienced, one of the worst things about a panic or anxiety attack, is that it can swoop in with no warning or reason. It’s times like those, where other approaches might benefit you.
Of course what works for one person may not work for another. And here at CVC, we can’t predict or tell you what will work. But we do believe that part of patient support is simply suggesting a solution to problem you haven’t yet solved.
It seems these days you can’t turn on the news or go on the internet without seeing how integral your diet is to your health. And we don’t mean your waist-size. There is a direct correlation between anxiety and nutrition. Obvious stimulants like caffeine can increase feelings of panic and anxiety, but things like salt/sodium can also make those palpitations come in plagues. Next time you reach for food at the store, really take a second to see how much sodium is in the product – you may be surprised! Foods that are recommended for people with anxiety include asparagus, garlic, eggs, fish, molasses, carrots, onions, beetroot and more. Additionally, crack a cold one! A cold soda water that is; soda water increases the levels of carbon dioxide that helps the body to become balanced when someone is hyperventilating. Soda water also decreases smooth muscle contractions and dilates blood vessels, which allows blood to flow easily around the body.
The term “Happy Place” didn’t come into existence for no reason. Whether this is a place you love; your childhood home, your favorite vacation destination, or even someplace totally fictitious, taking the time to calm down and visualize can work wonders. Not only will you feel simply more at peace by associating yourself with your “happy place”, you will distract your mind and your body from thinking about whatever is mentally ailing you. And remember, a lot of times, the magic is in the details. Actually remembering the way the sand feels on your feet, or the way a certain place smells can help you to envelop yourself in your serene setting. Don’t knock it til you’ve tried it!
We promise, this isn’t as new-agey as it sounds. A lot of times just talking to yourself can ease the tension. Although usually associated with the Alcoholics Anonymous program, reminding yourself to take it “one day at a time” is more useful than you may think. The key behind this saying has more to do with acknowledging that you shouldn’t worry about the future. Just focus on the now. You don’t know what will happen tomorrow, so why worry? And even if you do know, there’s not a lot to be done about it. You can deal with tomorrow, tomorrow. Other times, reassuring yourself is a big step. ”I can do this. I am doing this”. And though it’s certainly not for everyone, prayer can have the same effect. We’re not touting that you take up a religion by any means, but sometimes, if you do know a prayer, repeating it to yourself can have the same hypnotic and calming effect as a saying or phrase. Especially in the throes of a panic attack.
Talk It Out:
Not everyone understands anxiety. Some people have never felt panic before. They are lucky. However, a lot of people out there have. You may be surprised to find that one of your friends, carers or even family members has had a panic attack or two of their own. One of the worst things about a panic attack is feeling like you are all alone. However, having experienced one yourself, surely you would want to comfort someone who is having an anxiety problem, wouldn’t you? So why wouldn’t they want to do the same for you? Knowing someone has walked a mile in your shoes can take a huge weight off your shoulders, and it can create an even stronger bond between yourself and your support system.
As previously mentioned, everyone is different. They feel differently, react differently, and have their own methods of coping. However, sometimes, the hardest aspect of coping with anxiety is trying something new. We would love to hear how you deal with your anxiety and stress, or tips that have helped you so that they may aid others. And you know the old saying – “Keep Calm and Carry On!”.Posted in Diseases, Featured, Media Center | Tagged Anxiety, chronic illness, Coping, Panic | Leave a comment