Tag Archives: Swollen Ankles

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 | 1 Comment

Lee Ann’s Story

Posted on September 17, 2012 by CVCinfo

It was the third week that my ankles had been swollen consistently. That Wednesday, May 16, 2012 my mother and husband convinced me that an ER trip was necessary. The swelling had come and gone over the past 3 months. As a 41 year old mother of two teenagers, an asthmatic and someone who was overweight, I chalked the swelling up to being heavy. The shortness of breath had been there for years and again, I chalked that up to being heavy. Then I started to notice chest pain with the swelling and shortness of breath. That was when I realized that this might be a little more serious than I thought.

At the ER, the initial thought was that I had had a heart attack. Then blood clots then eventually, the final diagnosis… Pulmonary Hypertension. The language was not new to me or my family as my niece was born two short years ago with PH.

After a whirl of tests and a week-long hospital stay, I was discharged with little knowledge other than what I had learned from my niece. A Cardiac Cath was done and with this I was introduced to my now Pulmonary Doctor whom I love. Now the diagnosis was worse. Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease.

I was told that after 5 years I would have a 50% chance of living without a double lung transplant. My world just stopped. Here we were a family of four making good money and living a great life. I had to quit my job and file for Social Security Disability. I had to deliver the news to my husband and boys that I was going to die.

Here it is four months later; I have had an open lung biopsy and have been taking medications that make my symptoms worse. The money situation is so bad, we’re making enough barely struggle by, but not enough to live. I was approved for disability but have a $5000 out of pocket deductible with my husband’s insurance. Not to mention copays and script costs. Disability wont start until December 26, 2012 and Medicare wont start until May 2014.

Stress is bad, I find myself crying all the time. I try to put on a happy face but it is so hard to ask for help, watch my husband come home tired from work and do housework and cook because I cannot.

Everyone keeps saying it will be ok, my question is ok for who? I have not yet learned to deal with my illness and pray that soon I will see that I can survive.

Thank you Caring Voice Coalition for all you do everyday.