Winter Fun

I woke up this morning to 23 inches of snow. I have lived in the Northeast all my life so snow is nothing new to me, but I have never seen this much snow. As I looked outside, I was reminded of all the fun I had as a kid. Waking up to snow meant a snow day; it meant making snowmen, going sledding, and hot chocolate when I came in. I felt so frustrated because I couldn't do these things. Not because I was too old, you are never too old, but because of the o2 and my health.

Usually I hate the snow because it means cold. It is inconvenient and you have to shovel, but this morning I desperately wanted to go out and build a snowman. It was probably because after my visit yesterday and feeling like this disease was progressing and having no answers, feeling like it was taking so much from me and having no way to stop it. Going outside in the snow would be one big FU. Yes, I was on o2, but so what. I could go out with my 100 ft. tubing. I knew it'd be long enough. So that is exactly what I did. I bundled myself up just as my mom had done when I was a kid - thick sweatpants, thick socks, ski pants, second pair of dad's wool socks over ski pants, shirt, sweatshirt, jacket, gloves under jacket sleeves, scarf, and hat. I made sure I was well protected.

Bundled up and ready to go outside

The snow was nearly up to my hip. I walked a little ways on the deck, feeling like an astronaut. I was tethered by my o2 tubing just as they are to the spaceship, bundled up as if in a spacesuit. Al the world around me was white with snow flying through the air, more snow than I've ever seen at one time. It was as if I had entered another world.

My original plan had been to build my snowman in the backyard, but after walking only a few steps, I realized I would not be able to walk that far. My breathing would not allow for it. Even after the few steps I had taken, I was short of breath and had to take a break. As I sat down in the snow to catch my breath, I decided to build my snowman in the middle of the deck, right where I was. The snow was not snowman snow. It was soft and powdery and did not lend itself to molding in any way. Typically you would take a handful of snow and mold it into a ball. Then you would continue to mold it until it got large enough to build it on the ground, rolling it and making the ball bigger and bigger until it is the size you want. You do this three times, each ball slightly smaller than the previous one. Then you place the balls on top of one another, the smallest for the head.

Molding my snowman

This snow would not do this. It was so powdery that by trying to make a ball, it just sifted apart through my fingers, but I was determined. I NEEDED to make this snowman. He represented more than just a snowman. He represented my need to fight this disease and not give up. My mother always told me that there is more than one way to skin a cat. So I mounded the snow up in a hill, patting it and packing it as I went. When it was large enough, I started to mold it. I dug out areas to that instead of a mound of snow, it looked like two rounded balls. I didn't have the energy to make three. When finally done, I added two sticks for arms, two Oreos for eyes, and a carrot stick for a nose. I then decked him out in a mask, o2 tubing, and nebulizer. I was so proud and happy. I had accomplished what I had wanted and didn't let my illness or the o2 get in my way.

Masked snowman

Snowman with o2

Snowman doing his nebs

Pulmonology Update #3

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.