I had my follow-up at Mass General with Dr. Ginns yesterday. I had been really nervous prior to this appointment because I was scheduled to do a 6-minute walk and pfts. The pfts didn't make me nervous as I had done them a million times before. This is not to say I was looking forward to them. Pfts are often very triggering to my lungs. So much so that often I nearly end up in the ER and once was admitted to the ICU; however, it was the 6-minute walk that scared me. I had never done a 6-minute walk before.
The purpose of the 6-minute walk is to determine your exercise capacity. The objective is to walk as far as possible in 6-minutes. My fears about the test were that I didn't know whether I would be allowed to wear my o2 during the test or if they would try to do the test without. I wear o2 continuously, and without it my o2 saturations drop significantly, especially on exertion. In fact, I have to increase my liter flow when up and walking. Typically, I wear 5L at rest and 6L when walking.
Recently, someone asked me what would happen if I didn't wear the O2. This is a legitimate question for someone who doesn't need o2 and has no breathing problems. This is what I explained to them. First I would become short off breath. I would become so short of breath that talking would be difficult. Then I would have difficulty remembering things and understanding things. If a person were talking to me, I would have difficulty understanding what they were saying or asking. I would also have difficulty interpreting what they were saying, making it hard to give an appropriate response. Then I would become sluggish and lethargic. Finally, I would pass out. It is very uncomfortable to not be able to breathe and have your brain and body deprived of oxygen. Thus, the idea of doing the 6-minute walk without o2 scared me.The 6-minute walk can be done with or without o2. The only reason they would do it without would be to see how much your o2 levels dropped on exertion.
The test was no where near as bad as I feared. In fact, as tests go, it was pretty easy. I was taken to a long hallway, in which a line of tape had been placed on the floor, I was allowed to use my o2 and at the typical settings that I would use at home. Before the start of the test, my o2, bp, and heart rate were measured. I was also asked to rate my difficulty breathing. I then walked as far as po0ssible (up and down the taped line) in the 6-minutes. I was told to go at my own pace and was allowed to stop if needed. I was able to walk 343 feet. I did have to stop a few times to catch my breath.
After the 6-minute walk, I did pfts. I only did spriometry because the technician did not want me to overexert myself, especially after just having completed the 6-minute walk. The good news is that my lung function has not changed since my pfts in October. I am still at 20%.
After all the test had been performed, I saw Dr. Ginns for a follow-up. He went over my previous test results (CT-scan and barium swallow) as well as the tests performed that day. Unfortunately, Dr. Ginns had no answers for me. The barium swallow was negative for acid reflux and the chest CT was relatively normal. So he has no explanation for why my pulmonary function is so severely decreased. Since he has no answers as to why my lung function is so poor, he has no ideas as to how to improve it or fix it. As hard as it was to hear this, it was harder to see how this affected him. I could see how badly he wanted to be able to provide me answers and how it pained him to say that he didn't have any. On hearing this I felt like I was going to cry. I have lost so much to this disease and it's hard not to be discouraged. I want answers, but more than that I want someone to tell me that they can help. What do you do when the best doctors don't know how to help? Yet in these moments I try to be strong for me and for those around me. It is hard not to be scared though. Yet I have faith and hope.
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