Rosemary’s Story
I was diagnosed with Pulmonary Hypertension November of 2011. The years before that, I was very active. I had earned a Masters Degree in Counseling in 2006, the same year I was diagnosed with asthma. I have since learned that Pulmonary Hypertension is often misdiagnosed as asthma. Despite the diagnosis, I worked full time, took care of my parents, my nephew, and I worked with horses, caring for them and cleaning up after them. I was very physically active, constantly going somewhere or doing something.
Then I started getting tired having more “asthma attacks”. I couldn’t seem to catch my breath. I started sleeping more and becoming less active. I told my doctors that I thought something was wrong with me, but they said, “There is nothing wrong with you. Exercise more, take vitamin D and lose weight”. I knew something more was wrong, but I did what they said.
I forced myself to start doing everything again, despite the exhaustion. I joined a gym and went swimming every single day and changed my diet. I could only eat a yogurt and six crackers twice a day – anything more than that and I would get sick and start coughing badly. I did lose weight but my ankles and legs were swollen from retaining water. I started going to the doctor or ED at least once a month because I couldn’t breathe. I stopped losing weight and started retaining water so badly that I could not put on my shoes.
They said, “It is nothing, just your asthma” and gave me more asthma meds. In July of 2010 the doctor diagnosed me with COPD. I asked to see a specialist, but he refused to refer me, stating the treatments for asthma and COPD were the same. I started having chest pains and my legs were so swollen they were often purple. Again, I was told to lose weight. I no longer had the energy to do anything besides go to work and come home and sleep. I was now going to the ED or my doc 2 to 3 times a month because of the chest pain and shortness of breath, swollen ankles, anxiety attacks, lack of energy and the cough.
I was given a nebulizer and a pat on the head and told to lose weight and get more active. I said “there is something very seriously wrong with me, this is not right”, but no one listened. On Nov 5th, 2011 I was taking a shower and felt a stabbing pain in my right lung – it literally knocked the wind out of me. I could not breathe and it lasted for several seconds. I finally caught my breath, did a nebulizer treatment and went to work. People kept asking if I was alright as I had lost my voice and was coughing every time I moved. I said “it’s just my asthma acting up”. The next day, I went to work and it was a blur – I was in pain, having a hard time catching my breath and then having to stop every few steps to catch my breath. That night I could not sleep because every time I laid back I couldn’t breathe and was coughing constantly.
I went to work the next morning and was only there for three hours before I saw that my fingers had turned purple and again I couldn’t catch my breath. My chest felt like it was on fire and I felt like I was going to die. I told my boss, who told me to go to the hospital or call an ambulance. As soon as I walked in the door of the hospital, the nurse at the check in took one look at me and called out “We need a wheelchair. Shortness of breath”! They took me right back to a room and were undressing me and hooking me up to machines. I was told that I had a blood clot in my right lung and I was being admitted to the hospital.
They sent me to a regular floor, however the nurses there refused me, saying I was to unstable I needed to be an a more acute unit. So, I was sent to the PCU. I told the doctor, Dr. Dexter what had been happening and he said “I don’t think this is just a blood clot, something else is going on”. I asked “Does that mean you are going to discharge me?”, to which he replied, “No, you are not leaving until I know what is wrong with you”. I was on oxygen and hooked up to IV’s, but for the first time in months I was not scared – – someone was finally listening to me. Later, I learned the doctors and nurses were wondering how I was even alive my oxygen was so low. If I had not been talking they would have put a tube down my throat to breathe for me. They said I should have been dead.
Dr. Dexter consulted with Dr. Filner, a pulmonologist before both of them said they felt I had something called Pulmonary Hypertension. Over the course of the next three weeks I was given every test imaginable. Dr. Filner requested a right heart cath, but since it was the day before Thanksgiving the cardiac team did not want to do it. They said it could be done as an outpatient, but thankfully Dr. Filner was insistent. As I was on blood thinners for the blood clot, I had to have a plasma transfusion to slow down my clotting time.
At this time a nurse said I should be discharged since my oxygen level was now at a 100 percent. “I am going to go talk to Dr. Filner about discharging you. We need this bed for really sick people and you can take off that oxygen – you don’t need it”. So I took off the oxygen and watched my numbers drop from 100 percent to 90 percent to 85 percent. The nurse almost immediately returned, very red faced, and put the oxygen back on me saying, “I guess you are staying”. He left and I did not see him again.
Soon thereafter, I had the right heart cath procedure done. At first all the doctors and techs in the room were joking around, talking about what their plans for the holidays were. But then when the surgeon performing the test said “Ok we are in, oh look at this” all of the sudden people got serious and stopped talking. They were asking if I was ok, adjusted my oxygen mask, hooked me up to more wires. The surgeon came around to see my face, laid his hand on my arm and said, “The pressure in your lungs is 80. It is supposed to be four.”
It wasn’t until Dr. Filner came and saw me and told me it was confirmed that I had Pulmonary Hypertension and I would have to quit my job and take meds for the rest of my life. I stopped listening at “quit my job”. I was at the top of my career, I was opening my own office… quit? Never I had worked so hard and long to get were I was. I didn’t hear a word he said as he was explaining things. My boss sent over paperwork for FAMLA which she said would protect my job until I came back. My co-workers took up donations for PTO and money to help my family, as I was out of my own PTO. I was discharged without oxygen and a with a whole lot of new meds.
Three weeks later I went to see Dr. Dexter’s wife, who was considered to be the best when it came to Pulmonary Hypertension. In her office they tested my oxygen levels and she immediately put me back on oxygen. She then told me I would have to be on oxygen 24/7 from now on. I tried going back to work, even though Dr. Dexter said it was not possible, which unfortunately proved to be true. Every time I tried, I was back in the hospital for at least a week. The longest I made it was when my schedule was dropped to 5 hours. I made it for three days but on the fourth, I slept through the day and couldn’t be woken up. I ended up back in the hospital for a month.
That is when I threw in the towel. I told my supervisor who advised me to talk to HR and apply for the life insurance policy. The HR Department took up another collection for me and set up a day for me to quit three days before my FAMLA was up. They did this so that if I ever wanted to work again, it would not reflect poorly on me. The HR Director also helped me with COBRA.
The company raised enough to hold me over until the insurance started, which would match 60 percent of my salary. I was going to receive $1761. It may sound like a lot, but my mortgage and car payment alone took $1000 and COBRA took $531. The oxygen I needed was $50 and the co-pay for doctor’s appointments and meds took up the rest. I had no money for food or gas but thanks to friends and my family, we struggled through.
In August of 2012 I had to choose between making my COBRA payment or getting food for the family. I had already stopped a couple of meds because I could no longer afford them. I was turned down for state assistance because I “made too much money”. I was referred to a helpline and ended up on the phone with Caring Voice. The person who assisted me said that they could help with the COBRA payment, which meant I could now spend that money on food and gas and my other meds that I needed. It was the help I needed at a time when I had lost all hope. I was about to return all the oxygen equipment go off all my meds and drop COBRA. CVC stopped me from having to do that and basically saved my life. ‘Thank you’ just doesn’t seem enough, but it is all I have right now. My gratitude and thanks is all I can give.
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