Author Archives: CVCinfo

Holiday Hours

Posted on November 20, 2012 by CVCinfo

In honor of the holiday season, our office will be closed:

December 24th, 25th, 31st and January 1st, 2013.

Thanks and Happy Holidays!

Posted in Events, Featured | Tagged Caring Voice Coalition, CVC | Leave a comment

It seems like the holidays begin earlier every year, and this November is no different. Already we hear the carols on the radio, see white lights twinkling in the shop windows and see Santa popping up on every other commercial. And while it may be easy to shake your head and say “No! It’s too early!”, it’s hard not to embrace the season. Or is it? Holidays can often be hard for a lot of people; whether it’s the absence of a familiar face, dealing with a new diagnosis or just generally not feeling up to it. But, like the children in all the holiday classics, we implore you to not lose the spirit!

So, if you can’t get into the festive feeling, how can you make it through the coming weeks?

1. Decorate. Yes, this may sound like the least desirable thing to do when you’re feeling down, and you certainly don’t have to go all out, but it is often easier to give into the path of least resistance than to dig your heels in with adamant objection. If you exclude yourself entirely from celebrating, it will end up bringing you down more than lifting you up. Especially if you’re alone or missing someone, don’t let yourself feel like everyone else is celebrating except for you.

2. Stick to your guns. You may feel like you’re being a grinch, but be honest with friends or family about what your limitations are. You’re an adult, and if facing the endless parties or dinners or events is too much for you, stand up for yourself. This is your season too, and if things get to be too much, remember your a self-determinant adult.

3. Talk it out. There’s no better way to bring yourself down than to isolate yourself. Just because you don’t want the month of December to happen, doesn’t mean it will go away. Talk to friends, family, support groups, anyone! You’ll often find people are far more giving with their time than you might think (even when it’s not the holidays).

4. Give yourself some quiet time. This may sound contradictory to the last suggestion, but there’s a healthy balance between keeping busy and burning out. It’s also ok to acknowledge that you’re sad or going through a hard time. The whole month can be a lot harder to face if you have to fake it the whole way through. This is just as much your time of the year as anyone else’s, so when you feel like you need a break, politely decline and have some healthy “me” time.

5. Give back. If you’re reeling from a personal tragedy, hearing “it could always be worse” is a slap in the face. However, deep down inside, you probably know that doing something to help others when you’re feeling poorly will probably lift your spirirts. It doesn’t have to be a competition of “who has it worse” by any means, but doing something to make someone else happy, when you feel bad will improve your spirits and point some pretty good karma in your direction. And again, this is a great way to keep busy without having to talk, talk, talk or fake happiness with old acquaintances.

Whatever your situation is this time of year, remember that the underlying spirit of this time of year is HOPE. There’s something that quietly nags you, asking you to remember that there is good in the world, there can be a certain attainable peace and people can be better than you imagine.

Do you have tips for someone who may be going through their first December in a period of flux? Please share! You may make someone’s holiday not only bearable, but truly enjoyable.

Posted in About Us, Caregivers, Diseases, Events, Media Center | Tagged chronic illness, Depression, Depression at Holidays, Loneliness | Leave a comment

Remember

Posted on October 26, 2012 by CVCinfo

This week’s blog comes from our friend Scott Chippendale. He graciously allowed us to share his beautiful poem. We hope you enjoy as much as we did. Thank you Scott!

When the golden threads of twilight give way to the cold, lonely grip of night and the world seems to be an uncaring and distant place, lay your head upon your pillow and remember…..

Remember the gentle breath of flower scent…..
Remember the sweet breezes that dance through the leaves…..
Remember the soft lilt of a child’s laughter…..
Remember the cool waters cascading over the rocky stream……
Remember the loving glances of a tender lover…..
Remember the familiar whispers of childhood memories…..
Remember the joy of friendship fulfilled…..
Remember a birdsong melody caught in mid-flight…..

And when the radiant beams of gold peek through the window to wake your spirit with the promise of a new and brighter day…..
You may realize that we are never truly alone as long as we have the chance to remember…..

Posted in Diseases, Featured, Media Center, Uncategorized | Tagged chronic illness, Hope, Inspiration, Poem | 4 Comments

Cindy’s Story

Posted on October 19, 2012 by CVCinfo

I have had a long history of coronary heart disease so it is not uncommon for me to experience angina on a regular basis. However, in November 2009 it became stronger than usual and my doctor ordered first a stress test, then a heart catheterization. The doctor preforming the cath found no real changes in the left side, so he decided to do a right sided cath and check the pulmonary artery pressure, which was elevated but not too high. He told me that I was begining to show signs of pulmonary hypertension.

I was not familiar with this and when I went to the follow up with my doctor he put me on a new medication which I assumed was for the PAH. It wasn’t, so in September 2010 I had to go to the ER due to severe angina again. Another heart cath was done including a right sided one to further assess the pulmonary pressure. It had gone from mild to severe in less than a year with a pressure of 80.

I discussed this with my doctor and asked why the new medication had not worked and I was then told that the medication he put me on was not for the pulmonary hypertension. I asked why he had not addressed the PH and he shrugged and left the room. It was at that time that I found a new cardiologist as well as a pulmonologist who put me on PH meds. I was on the lower dose for a year and a half and there were episodes of shortness of breath and I asked about possibly increasing the dosage, but the doctor did not want to do that. I had planned a trip out of the country for vacation and the doctor did a HAST test and said I was fine to fly without oxygen.

He was wrong. I thought I was going to die the enitre trip. I became very sick and really could not participate in my own vacation. By the time I got home I was even sicker. I went to the doctor to explain what had happened and he said it was not from the PH and that I should talk to my cardiologist. It was at that point that I looked for a PH specialist that my insurance accepted and found one in my general area. He is still in the process of adjusting my medications and has done two cardiac caths, one right side the other left side. I have still not been able to return to what I was able to do before the trip and the doctor isn’t sure if I will ever be able to.

When I was put on the PH meds, I had no idea how expensive the medication was and when they told me what my co-pay was I said, “Well they might as well shoot me because there is no way that I can afford that as I am on disability.” It was then that the speciality pharmacy referred me to Caring Voice. They made everything so easy and within only a couple of days had me approved for the balance of that year as well as the following year. I cannot thank them enough for making such a difficult time easier as I don’t have to fight to get my medication.

So that’s my story so far. I am still working on getting back to where I was before the trip and I am determined that I will do so. I will just have to take baby steps, but I know myself, and I will get there.

Posted in Diseases, Featured, How We Help, Media Center, Uncategorized | Tagged Angina, Coronary Heart Disease, Hosiptal, Misdiagnosis, Pulmonary Hypertension, Share Your Story, Swollen Ankles | Leave a comment

Stories from Caregivers

Posted on October 12, 2012 by CVCinfo

Imelda’s Story:

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.

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Keli’s Story:

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!