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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9 Responses to Rosemary’s Story
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Your story is very similar to mine. Thought i had chronic asthma, hubby thought i needed to lose weight. Many doctors. I did get swollen from water retention but i kept fainting and blacking out from 2000 to 2004. My black out spells were at night, no one saw then happen. It was so hard to even walk though aa arking lot. I finally fainted in 04 in front off family. Rushed to ER My doctor was too get too the bottom of this. 3 days later had a diagnosis of idiopathic pulmonary hyper tension. I was happy until i got home and found out i would die in on2 to 5 years. I was referred to a great pulmonary doctor. My first right heart Cath, my pressure was at 93. I was put on a study med called tyvaso. My pressure after years of trial and error is right around 37. I am doing okay now and hanging strong. Do not give up keep fighting. Try new meds if you can and I thank the CVC fort helping me when my hubby was out of work.
rosemary..what an amazing story !! i can see what a strong woman you are. i too, have PAH, my story was in an earlier article…
remember you need to BELIEVE…
I too was loved by CVC. There when I needed them. PAH changed my life. Never saw it coming and has become very hard to deal with at times. Became ill in 2010 and diagnosed with PAH in 2011. My prayers go out to you and your family. It is a blessing to wake up and share time with my family………
I too have PAH .went through 2 of the three Med’s that can treat this condition. I am unable to take these drugs due to side effects , both drugs were very expensive , thanks to CVC they helped a lot. At the present time we are doing nothing?? Why?? Side effects too great. .What next any one that knows please email with heading PAH . We are all hanging in there
ask about Veletri. I am a new person!
It is so unfortunate that this is a recurring theme. My daughter was diagnosed with asthma at age 6 after having double lung bacterial pneumonia. The pulmonary doctor said he believed her asthma had been caused by this. As the years went on her fingernails started turning blue but I didn’t know this was abnormal. In 2010 she got to the point that she couldn’t even ride a bike down the street. In Jan. 2010 at 15 years old my daughter was finally diagnosed with PH caused by a congenital heart defect that had never been diagnosed because of a misreading of an EKG years earlier.
I wish you well and that the treatment will help you.
Hugs:o)
Jane ~ mom to Nicole, 18 yo, VSD, PAH, Eisenmengers (dx 1/22/10) BHJS (dx 2/4/11)
“You’re braver than you believe, and stronger than you seem, and smarter than you think.”
Richard–where did you hear that there are only three meds for PH? There are at least 9, and research is ongoing to find/develop more.; Please talk to your PH doctor, or his/her PA or nurse practitioner. There is much hope for those of us wit PH. I wish you luck in finding the right result for your illness.
My husband was diagnosed with PH a couple days before Thanksgiving 2011. Caring Voice helped us to o with the cost of medication. My husband died on Mothers Day May 13th, but I will always be grateful to Caring Voice.
I too have been blessed with help from the angels at Caring Voices. I was diagnosed in 2003 but was able to continue working. When it became to difficult, I was able to retire. I had just retired and found out about the dreaded donut hole. I was terrified as to what that would do to me. I’d go broke. Caring voices came into my life and has saved me ever since. Thank you.