My Experience with Massive Hemoptysis

Hemoptysis is a terrifying experience for a CF patient. This is my story of massive hemoptysis.

                                           February 20, 2011


The morning of my massive hemoptysis, February 20, 2011, I woke up feeling fine, and ready to enjoy a wonderful day with Michael, my sister, and beloved niece Ava. We had lunch at Carraba's Italian Grill and went shopping afterwards. After lunch my glucose was in the 30's which was an indicator that my food did not empty my stomach (I have gastroparesis, which I will write about in a future blog). I ate several pieces of candy to bring my glucose up and it took much longer than usual. Slowly, my blood sugar came back up to normal levels; but my glucose never spiked to a high level indicating that all my food emptied. Gastroparesis may be relevant in my pulmonary complications, as it contributes to aspiration. However, there is not enough sufficient evidence to support a correlation between exacerbations, hemoptysis, and reflux and/or delayed gastric emptying in Cystic Fibrosis at this time.

Around 10pm that night I warm, watery, bubbling sensation coming up my throat from my chest. I smelled and tasted blood. I had not been coughing much during the day. But when I did cough after I felt the warm sensation in my chest, blood gushed up into my mouth and I immediately sat down over a trash can. I could feel the pressure building up in my lungs. Every time I tried to take a deep breath, I choked on more blood. When I talked, the blood droplets flew out of my mouth and landed all around me. It was in that moment I realized this was life threatening and I needed to get to my CF center immediately. An ambulance was called, but I refused to go with them. The EMT asked me if I just had a bloody nose, and another told me she just knew people with my disease "died before 13 years old." They also told me that I would wait at least an hour and half at the regional hospital before a doctor would ever see me. Needless to say, I refused their transport to the local hospital and Michael drove me to my CF center an hour and half away.

I paged my CF doctor on the way to my CF center, I paged the pulmonary doctor on call twice. He told me to go to the nearest hospital, but I refused. I knew I needed to get to a CF center immediately. Once I got into the ER I had coughed out several cups of blood. I was exhausted. Yet I managed to remain calm despite bleeding constantly and choking on my own blood. I could feel my lungs filling up with blood, and my breaths became shorter and shorter as the hours passed. It is only now that I realize I was able to remain calm because I was in a state of shock and in survival mode.

Once I was assessed by the ER doctor I sat in the ER room for hours. Finally a CT scan and Chest X-ray was ordered (why a CT scan was taken prior to a regular Chest X-ray does not make sense, but I will not go into the details of this in this blog). Hours later I was told "You just have pneumonia" and I replied "No, this is not normal. I am experiencing massive hemoptysis. I am growing weaker by the minute and can barely hold my eyes open. Please page the pulmonary team. They will know what to do." There was a major break down in communication with the ER physicians and their concern for my situation, which made this experience far more anxiety provoking than it should have been. Eventually another radiologist reviewed my CT scan and Chest X-ray and diagnosed a hemorrhage in my left lower lung. Hemorrhaging was obvious, as I filled a small cups over and over with pure, bright red, blood.


Hours later orders were placed to get me to Step down ICU. Once I was in step-down ICU the pulmonaryteam assessed me and I was immediately moved to ICU. I was delighted to see the face of a CF specialist, Dr. Y., enter my room. I knew then that I was in the right hands and with someone experienced in CF and hemoptysis. Finally, I felt a sense of peace that I did not have dealing with the young ER Resident who made my experience far more stressful than it should have been.

Nearly 12 hours after I began experiencing massive hemoptysis I was in ICU waiting for embolization. I was very pale by this point, weak, and drifting in and out of sleep. I would glance over at my family members, tell them I loved them, and drift back into an exhaustion-induced sleep. I was scared. It was this experience that made me realize it does not matter how great your lung function is, you are not exempt from the brutal complications of CF.

I remember being transported to Vascular Interventional Radiology with a nurse next to me. I was on oxygen, still coughing up mouthfuls of blood, and could barely speak. My breathing was labored, I was wheezing, and my respiration rate was very high. I remember Michael and his mother being in my room and kissing me as my nurse helped me get onto a stretcher. I remember my parents being there and kissing me as well. But I will never forget the look on Michael's face. He was terrified and he, too, was in shock. Michael whispered in my ear that he loved me and would be there waiting on me when I returned. I watched as my mother left the room in tears. My heart broke.

Minutes later I was being lifted onto a cold metal operating table in Vascular. The nurses were prepping me for the embolization. They were talking to me and waiting on the surgeon to arrive. The nurses assured me that the physician performing my embolization was experienced. And these nurses worked together to ensure my comfort and to give me peace of mind. I felt comfortable, mostly because they were talking to me and I was too exhausted to emotionally digest everything that was happening.

My undergarments were removed, a nurse shaved and prepped my groin using a sterile technique, and they began strapping me down. My arms and legs were tied and bound to prevent me from moving. I felt out of control and in that moment, I realized someone else was now in control over my body. The doctor who would perform my embolization walked in. I prayed. I did not know what would happen next. A sedative and pain medication was injected into my IV. I grew sleepier, and closed my eyes. I thought about Michael and my family. I felt tears stream down my right eye and onto my cheek, and a nurse wiped them away. I fell asleep and the procedure began.

I woke up in ICU. My legs were heavy and I was told not to move because I could cause a hematoma to develop in my leg. I looked around the room, searching for my loved ones. Once my eyes met with theirs I drifted back off into sleep. It would be over 8 hours until I could move my legs. I was extremely weak and had no desire to move much of anything. My left lung was diminished, and I could feel it with every breath I took. I stayed in ICU for five days until I was finally moved to a regular room. I spent just over two weeks in the hospital. My lung function recovered, but my physical strength has never recovered to where it was prior to the hemoptysis. This experience changed my life and my outlook.

                     I have learned a lot from this experience:

1. Your loved ones are most important (I already recognized this, but it was reiterated by this experience).
2. Always have an advocate with you, to advocate for you when you are too sick or tired to do so for yourself.
3. Life can be taken away in an instant.
4.  Lung function is not an indicator of whether or not a patient will experience serious complications, such as massive hemoptysis, in CF.
5. Your life is in a doctor's hands. If that doctor does not listen to you, you are not receiving quality health care. And it is your life that will be in danger should a doctor not recognize the severity and potential complications of your symptoms.
6. Having an emergency plan in place with your family members could save your life.
7. Do not assume you are exempt from various complications CF can cause just because you have good test results.
8. Make sure your loved ones have a list of your doctor's contact information, medications, allergies, and know your medical history.
9. A health care power of attorney and living will should be on file at your hospital and a copy should remain with your family members.
10. Back pain, for me, was in indicator of something going wrong with my lungs. The day before massive hemoptysis I had horrible back pain that subsided. However, now I realize this was not back pain- this was lung pain that preceded my massive hemoptysis.
11. Having knowledgeable doctors and nurses to assist you during a medical emergency is essential. Your life is in their hands.