Good day to you all,
Although I am a published author, I find it sort of awkward to write about myself. My association with the Caring Voice Coalition, I believe, began in early 2010.
Although somewhat related to my PAH, I was diagnosed with breast cancer in 2007, and happy to report that I am cancer-free for more than five years. This chain of events eventually ended with me in the hands of CVC.
Since 2005 I was having Atria fibulations that were misdiagnosed as some sort of heart problem. I have always been an avid walker/gym person and I refused to take heart meds since, after extensive tests, doctors couldn’t find anything wrong with my heart.
My feet would swell and they put me on water pills which resulted in low potassium levels, dehydration and wasted ER visits, and more A-fibs. I was misdiagnosed by a second cardiologist as having congenital heart failure. Nothing could be further from the truth. One can not be swollen with fluids and be dehydrated. My number in terms of failure was 36.
My self-esteem and daily life, as I knew it, was coming to an end. Then in 2009, I was diagnosed with lung cancer, and I opted to have half of my left lung removed. No Chemotherapy nor radiation was needed, and 2 PET scans later, showed no trace of the demon.
During my hospital stay they assigned to me Dr. Navas of Clearwater Florida and Dr. Amin, my Pulmonary specialist also of Clearwater. Both noticed that the right ventricle in my heart was stressed at almost 70%. They summoned for my prior stress tests, and A-fib ER records, and the conclusion was PAH. Suffering from it for about 3-5 years, they said.
Dr Amin performed a heart cath, which confirmed their suspicions.
I cried for the time I had lost, the wrong diagnoses, the money spent that I didn’t have for tests that I did not need, and for the short time that I was given to live. I fought and won two cancers, all alone. I live alone and I am alone. Now this? Devastation? Oh yes, it set in and I sold my beloved bicycle as I could barely walk a half a block.
Dr. Amin my pulmonary wonderful man, finally convinced Etna Insurance to pay for the Tracleer which was his choice drug. I was told that my out of pocket would be $ 1,400 per month.
That’s it, I thought… I am dead. I prayed and cried ‘to please stop this, please let me die in my sleep tonight… There was no way I can pay for this.’ The next day I called the manufacturer who put me in touch with CVC and my contact person was Kurt, bless his heart. Kristen Porter is my contact person now.
Oh dear God, I was approved to be helped in paying for my co-pay by CVC. My life line! Suddenly I didn’t feel alone, and something was telling me that I would be okay after all.
I would see Dr. Amin monthly, and would do the 6 minute walking test feeling drained each time. In six months after the initial prescription of 125 mgs twice per day, I was able to walk around the block! My echo cardiogram in late 2010 showed a 30% improvement.
The meds don’t make PAH better, but they helped me get motivated and gave me my wings back . CVC helped me get there, without their help I would have died 2 years ago.
The question was, where did this come from? According to Mayo Clinic and my doctors, the fact that I have had sleep Apnea for who knows how long, caused my cancer in the lung, and PAH. I have been sleeping with CPAP ever since.
In mid-2011 I signed up at a local inexpensive gym and started to lift light weights and walked for 10 hard minutes as my heart rate would go up too fast. I didn’t give up. Three times a week and very tired, I kept at it. Some days I felt like giving up, and took deep long breaths every 15 minutes. I live in treatment only through CVC’s help.
It is now June 2012, and CVC has been standing with me and by me and I owe them my life!!
I now walk the treadmill and do a 20 minute mile with my heart rate steady at 110. I ride a new bike… I painted my apartment piece by piece, feeling the need to look forward. I have lost 40 pounds and I don’t know of depression or end of life, feeling more positive every day.
PAH ? Oh I know that I have it, just as a diabetic knows their sugar levels are wrong. Feel it? Only if I push my self too hard. I don’t think about it and I go about my life as though there is nothing wrong inside me. If you are afflicted with PAH, know that you are not alone although it feels like you are. If you are being helped by CVC then you are as lucky as I am, and you should get out there and tell yourself that you have someone behind you, someone who truly cares. Get moving even if it feels like you’ll fall apart.
Last month’s echocardiogram and every test since early 2011 showed my condition as “stable”. Ventricle stress at 40%. I do take medicine, yes, but I consider CVC my life line, sent to me by divine intervention. For without their help I couldn’t have lived, I would have given up 2 years ago.
God bless all those who help this God-sent organization to help people like me who would otherwise face a painful and very short life. And I pray that Caring Voice Coalition will continue to stand by me, as I also pray for a cure for PAH since more and more people are diagnosed weekly with this dreadful lifetime condition.
I apologize, if my story was too lengthy, and I thank you for the opportunity to tell others that they are not alone, and that your organization is most needed and needs to continue receiving the funds to help us.
God bless you Caring Voice Coalition! You care, and I can never thank you enough.
God bless all the contributors for supporting you in this effort. I feel truly blessed..
Tarpon Springs, Florida