Patient story

Marilyn Hanft

My name is Marilyn Hanft. I am a 66 year old retired critical care RN. I retired in November 2009 and my husband and I (with a golden retriever and a ragdoll cat) moved onto our 36' motorsailer and headed south from Portsmouth, NH. Our plan was to head down the Atlantic Intracoastal Waterway, stopping eventually in St. Mary's, GA where we would join boating friends. That trip is a major story in itself, but a tale for another time and place. We eventually arrived in St. Mary's and soon fell in love with this lovely small Georgia town. We joined the Yacht Club and bought a house, planning to use this as our home port for future cruising. We spent most of 2010 traveling up and down the Eastern Seaboard, either by car or boat. We arrived for good, on the boat, on December 31, 2010 and went to work organizing our new home.

About mid-February 2011 I began having a lot of trouble with my allergies which triggered my asthma. I saw a local allergist and was started on nebulizer therapy along with antihistamines, prednisone, and various other meds. Nothing seemed to help although I was no longer wheezing. I did have sudden bouts of coughing anywhere from 1-2 episodes to 7-8 episodes a day which made me feel as if I were going to pass out. This was a classic case of the doctor not seeing the zebra among the horses. I had a 25 year history of multiple allergies and asthma, ergo I must be having an asthma flare.

On June 2 I finally gave in and went to our local ER. Once they had my oxygen levels up and my respiratory rate down a little, the MDs told me I had a large blood clot (DVT) in my right calf. They didn't do a CT at that time but they felt sure we were dealing with at least one PE and maybe more. Unfortunately, they didn't diagnose my pulmonary hypertension. I remained in the hospital for 11 days, being discharged when I knew I still wasn't ready. Over the following week I got worse instead of better. My MD had given my oxygen to use with activity, but I didn't think to use it all the time, especially at night. This was an indication that my cognition was seriously impacted. I worked with respiratory patients for 40 years, but I didn't apply that learning to my own situation. Exactly a week after my initial discharge, I had my husband call 911. I realized later that the rescue team thought I might respiratory arrest any minute. We went "lights and sirens" back to the hospital. That is when they discovered I had many, many pulmonary emboli, not just one or two. Added to that I now had a severe right-sided pneumonia. They put me on BiPAP and back to the ICU I went. The rest of that day is a bit of a blank for me. The next clear memory I have is the on-call MD saying they wanted to transfer me to the regional hospital 35 miles away in Brunswick, GA because they thought I would need a ventilator because I was not improving. Again we went lights and sirens to the Brunswick hospital. Again I was admitted to ICU. By the next morning I seemed to have turned the corner toward recovery, so I never did need the respirator. This was when I met my current pulmonologist.

Over the next 11 days he did multiple tests - CT's, blood work, V/Q Scan, etc. Unfortunately, even with a heparin drip and warfarin I still wasn't adequately anti-coagulated and was still throwing clots. At this point my MD decided I needed a venous filter (also called a Greenfield Filter). That finally stopped the PE's. On the day before discharge the doctor told me they finally knew what else I had besides PAH - I have factor V Leiden, a genetic clotting disorder. That explained the problems getting me anti-coagulated and why I had the DVT in the first place. I was discharged on July 1, 2011.

Over the course of the next few months I learned that I would be on oxygen and warfarin for life. My husband and I regretfully decided that cruising was out and we would sell our boat to help offset the $150,000 medical bills, most of which were not covered by our bare bones health insurance. In February 2012 I started taking Adcirca and very quickly went from 24/7 O2 to only using it 15 hours a day. When I finally qualified for Medicare in November 2012, the drug company withdrew my no cost supply of the drug. My pulmonologist and I decided to switch me to "Viagra" as it was the cheaper choice. I had been doing very well, but started a mild decline with the drug change. Then, in January 2014, I started on Adempas. I have responded very well to it and feel the best I have felt since beginning this long journey. In December 2013 I set up a website/blog for those with PAH and/or thrombophilia (like factor V Leiden) called Of Bad Lungs and Blood Clots.  I also discovered this association about the same time and have become very active in it, participating in the Phenomenal Mile walk, looking forward to attending the Conference in June, joining the CTEPH Advisory Board, and last week, participating in the Media Blitz for World PH Day.

The future looks a lot rosier than it did just a couple of years ago.

posted 2014


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