How I Got Here

In July 2009 I suddenly developed pneumonia. I have never been the same. I was on oral antibiotics and returned to my full job a few weeks later. In September I suddenly began making horrible noises when I breathed and found myself twice in the ER of the local hospital. Both times they felt I needed IV steroids and I was hospitalized, once for two weeks. During the second admission I kept insisting something else was wrong. The lung doctor I was using then tested me for auto immune diseases and found "nothing wrong". I asked to have my cardiologist, Dr. D. called in as well. He agreed when another doctor said they thought I might have a valve infection. I had a test called a TEE and they determined that my mitral valve was infected. (My aortic valve was mechanical and they felt it odd that it was the mitral and not aortic that became infected.) I had a PICC line put in and was sent home under the care of an infectious disease doctor who had me on IV antibiotics for six weeks. At the end of that time I returned to work again. I really thought things were okay until my legs and feet were swelling. I had to purchase EE width shoes and even queen sized knee highs cut off my circulation. It was awful. At times my feet were numb. I went back to Dr. D and he said I had some fluid and gave me a low dose of lasix to take. It didn't really help but I went to work each day. Before I knew it I had pneumonia again (thanks to a sick coworker) and was hospitalized in critical condition. A few days earlier my local hospital ER told me to go home as my pneumonia was "UNIMPRESSIVE". Less than 48 hours later I was told by three doctors at a major university hospital it was one of the worst pneumonias they had ever seen. I was coughing up blood for a few days. After that pneumonia I was so weak. Within a few weeks of being discharged my shortness of breath was horrible. I went to my local internist who told me she felt I had heart failure and needed the cardiologist to take care of this. I went to him again and again he did an echo but told me things were okay. (NOTE: if you don't feel the doctor is correct, get another opinion!) I went back to my lung doctor and she could tell I was overloaded with fluid (pleural effusions, which is fluid in the sack that hold the lungs.) I went to the hospital and had a litre of fluid removed from the lung. I went home and felt so much better. By this time I could not lay down flat and could not breathe bending over or other positions. The lung doctor ordered me oxygen. I ended up back in the hospital with fluid overload. By that time I needed oxygen 24/7. EVEN with the oxygen, at times I gasped for breath. I couldn't even shower without the steam throwing me into gasping fits. It was hell. Late spring I was hospitalized again (this was about my fifth time) and they removed over three litres of fluid from the pleura again. I had to have a tube put in my chest which can collapse your lungs. Not a pleasant experience but one that probably saved my life. During that time I knew I had to find another cardiologist. Dr. A had an echo done and they saw the pulmonary artery pressure was extremely high. For those of you who understand, it was about 90. That is severe PH. He also saw that my mitral valve needed replacing immediately. The combination of the two was why I couldn't breathe. They had to send me to Philadelphia as I needed a heart catherization and the mechanical aortic valve was in the way. I needed a small hole made in my septum by a doctor who did this frequently. I went to Hospital of the University of Pennsylvania where I met the wonderful and caring Dr. Hirshfeld. He gave it to me straight and told me I needed the surgery and he was willing to arrange it there if I would agree to it. I had the surgery July 27th where I received a mechanical mitral valve and hoped to have the PH lowered significantly, if not returned to normal. Sadly, this did not happen. It was lowered to about 70 but since it should be 30, it is still considered in the severe category. Dr. Hirshfeld got me in with a top PH specialist at that hospital (after confirming with a follow up right heart cath that my pressure remains elevated to this level.) The new doctor wants me to receive a medicine, adcirca, to see how much this will lower the number. I am still on a CPAP machine at night, which has oxygen bled into it. It's been over a week and I am waiting for my insurance company to approve the medicine. I have no idea what my copay will be but the costs of these drugs are astronomical. More about that in another entry.