Irene’s PH story
Irene
My story is probably not much different than anyone else’s, but I think it’s horrendous given my background.
First, I have been working since I was 10 years old. I am now almost 54. I am the poster child for independent, self-sufficient people. I was a single mom and raised my son alone, even while working three different shifts a week for a year and a half (police work). I put myself through college early on and ended up with an associate degree. I finished my bachelor’s degree two years ago. I should point out that I was obese at this time and had been for many years and always it seems had blood pressure problems. I was taking blood pressure medication for years, but every time I would go see the doctor it would be really high, which we all attributed to “white coat syndrome” as I’m petrified of doctors, needles, etc.
Roughly two years ago, I started feeling wiped out all the time, and to my horror, I was starting to have trouble walking more than a few feet at a time. I was out of breath with the slightest activity. I started to fail at taking care of myself in the grooming and hygiene department because, honestly, it would wipe me out for a whole day. I had a very physical job which was becoming more and more of an issue for me. I still maintained my workload and got things done, but I couldn’t give the property I was managing the attention it truly needed.
I lived in a nice condo which I rented, finally paid my car off and, after what seemed like forever, I was actually starting to get a grip on my finances. As I’m sure many know, being a single mom with no financial help is a struggle.
I started to cough a lot and along with that came episodes of passing out. It happened randomly, even while driving! I went to my primary care physician who said it was asthma. He treated me appropriately for that, but I wasn’t getting any better. I have a long history of respiratory issues, but nothing that wasn’t fixed with an antibiotic or two. Finally, after researching my symptoms, I went back to my doctor and told him I thought maybe we should look at congestive heart failure (CHF). He sent me to a cardiologist and CHF was confirmed. She started to treat me, but she also recommended I see a pulmonologist to try and determine what may be causing the CHF.
The pulmonologist put me through a battery of tests, all except the right-heart catheterization, which I cannot do because my chances of complications being under anesthesia of any kind, even twilight gas or the like. All of the testing pointed to pulmonary arterial hypertension (PH). The pressures in my lungs were off the charts, and my brain natriuretic peptide results were in the mid-500s. Not good. I started on a higher dose of medicine for the blood pressure, medicine for the edema around my ankles and belly, and two oral therapies for the PH. I started to see a shrink as well because I did my research on PH and the current prognosis of the disease.
In the meantime, I lost my job, lost my condo, and had to sell all my belongings (except the car which I needed for all the doctor’s appointments I have). “Miss Independent” was forced to move in with her son, daughter-in-law and toddler granddaughter. Their home is on the small side, and while I am extremely grateful I have my wonderful son and his family, I now find myself living in an 8-by-10-foot room. To go from being on my own for so long to a bustling, noisy household has been a difficult adjustment. I love my family so it is OK, but it is hard for me.
Thank God I have qualified for disability, but I still insist on paying for rent, groceries, utilities, etc. I will not burden my son and his young family any more than I already am. Besides, they can’t afford to totally care for me. I have car insurance, a cell phone bill (which I need otherwise I would toss the thing), and I pay COBRA premiums (which are ridiculously high, as I’m sure you all know). Remember I said I finished my degree? Well, I did that on student loans, which are now due. I pay for my monthly medications, hospital and doctor office bills that my insurance does not cover. I have a couple of credit cards that I do not use but have been paying off for years. I had to use those to survive after I lost my job, as I still had a lease to fulfill on the condo, etc.
So fast forward to a couple of months ago. I honestly do not remember how I came across Caring Voice Coalition (CVC), but I did somehow, and I went on their website and read all about them. These people are God-sent lifesavers! I applied for help and was contacted immediately by a case manager. I was approved for help and it could not have come at a better time. They have saved my life, literally—as I was falling into such a deep depression about how the heck I was going to pay for everything that I even worried myself. I can breathe a little easier knowing CVC is there for me and all of the rest of you.
This organization is by far the best thing out there, and everyone I have spoken with at CVC is caring, warm and truly engaged in my wellbeing. I can’t thank God enough for them. I can’t thank them enough for them! I wish I could win the lottery—not for me, but for my son and his family and for CVC, to which I would donate a nice, tidy sum! I would also donate to the National Institutes of Health and other research facilities in order to come up with a cure for PH and other lung diseases and disorders.
That’s my story, most of it anyway. CVC are angels on earth and I am so glad they are out there for us. Spread the word about them—let’s do what we can to keep them going. Without them, an awful lot of us would be in big trouble. Thank you, CVC!
We are very grateful to Irene for taking the time to share her story. If you’d like to share your story, we would love to hear it!
Caring Voice Coalition
Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.
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