As you see by a previous post, I have gone to my first pulmonary support group. I joined the Pulmonary Fibrosis Foundation and followed them on Instagram. Not sure that has been a good thing. This past week I felt very weepy and confused. I may need to navigate the possibility of not having income. Here I was at the top of my game, able to bring in a ton of work, doing the most significant and recognizable commission of my life and this tries to strike me down. This is not where I thought I would be. I pictured myself paying off my mortgage, and school loans and buying property and instead, I’m trying to pay last years taxes, recovering from a loss of income from a tremendous job when a vendor went under and trying to pay off medical bills from the hospital visit last year when I had such poor insurance.
Am I depressed or just overwhelmed? I hear I can’t get disability insurance for two years from signing up for it. I’ll have to pay for my insurance. Do I need it? When will I know I need it? How quickly will this take me down? Will it take me down, from all websites it looks like that is inevitable. What is my next step? Why did everyone warn me against getting a lung biopsy at the last meeting? What are my options? How and when do I apply for a lung transplant? What other options are available to me?
When searching for these answers, I discovered I could get some of them answered through a social worker. I’m assuming I can do that through the hospital where my doctor is, if not definitely if I go to pulmonary rehab at a hospital. Pulmonary rehab is next on my radar, but I have to figure out how to afford it. Twice a week for six weeks and it is $75 a visit is out of my budget.
I have so many questions; I feel so alone. Sometimes you want to be able to talk to someone about dying. Friends and family don’t want to do that. They want to talk about hope and belief, and I’m okay with that, but I also need to look death in the face and talk about the feeling surrounding it.
I emailed the support group back and asked them if they knew of any counselors or individuals that dealt specifically with this. They said, though they were not professional counselors there was one woman in the group who would like to help people one on one. So my new friend (F) and I met up for breakfast.
She let me tell my story and then told me hers. She has been diagnosed with Idiopathic Pulmonary Fibrosis. I know that idiopathic is a word added with a death sentence. 3-5 years is the norm, and it looms over my head until the doctors can figure out some other reason. One who lives with that is pushed through the system; You can get moved up on approval for disability if you have this diagnosis. My new friend has it. However, she was diagnosed six years ago and is not on oxygen.
I left our meeting with some questions answered, a friend and more questions. I suppose the uncertainty will walk with me on this journey a constant companion.
Inogen g3 is not as light as the G4 but I’ll take it!
The other day I went on Craigslist, as I sometimes do, as I was looking at portable oxygen concentrators. Specifically, I was searching for an Inogen One G3 or G4. Looking at the comparisons below, of course, an Inogen G4 would be a better choice, but they are harder to come by.
I have wanted a portable oxygen concentrator for a while and felt stifled by not having one. Tanks are o.k, and the advantage is they are quiet and make a great weapon should anyone approach you and you have the strength to swing it. However, you can’t take them on an airplane, and they run out.
I love being able to go and do. I did this with the tanks, but with the concern that I would run out. Now I can plug mine in the car and charge it while going to my next destination.
I love being able to go and do. I did this with the tanks, but with the concern that I would run out. With a portable concentrator you can plug it in the car and charge it while going to your next destination.
A new Inogen costs about $2,295. . They are not cheap. They run on a battery, come with a car charger and can be plugged in. An Inogen could replace your home concentrator, though I don’t think I can put a humidifier on a portable oxygen concentrator. The other difference is that it gives a pulse instead of a continuous flow. Here are some specs on the two.
Feature Inogen One G3 Inogen One G4
Feature
Inogen One G3
Inogen One G4
4.8 Pounds
2.8 Pounds
Length : 8.75 IN.
Width: 3.0 IN.
Height: 8.25 IN.
Length: 5.91 IN.
Width: 2.68 IN.
Height: 7.2 IN.
Flow
1 – 5
1 – 3
Battery
Single Battery up to 4.7 hours*,
Double Battery up to 10 hours*
Single Battery up to 2.7 hours*,
Double Battery up to 5 hours*
Noise
39 dBA**
40 dBA**
Power Sensing
AC Power Supply 100-240V, 50-60Hz (auto sensing to allow worldwide use)DC Power: for mobile use
Operation
Simple control functions and easy-to-read LCD display
Use
Designed for stationary, portable, and travel
As you know by this blog, I am keeping my identity private. The reason is because I am a public person who gets their work from the Internet. I’m afraid that if people see I have this disease they will not send work my way. I did post a need for one of these when I had pneumonia last year. I had envisioned someone having one of these in their closet going unused. Unfortunately, I knew that if it was unused it probably meant the person that owned it died. Because of my public status and anonymity, I couldn’t post I needed one after pneumonia or do a Go Fund Me or something.
Low and behold while searching for a portable concentrator in Texas I found one for $850 on Craigslist. Buying anything from Craigslist has this haunting feeling, but I was genuinely interested. I snapped a picture of it and sent it to a friend and my daughter and said, this is what I want for my birthday and Christmas. I was half joking when my friend replied. ” I’d love to buy it for you.”
I still can’t believe it. But how? This seller was in Dallas 3 1/2 hours away. I have some dear friends in Dallas and gave them a call. Maybe if they could go and check it out, they could ship it to me? I called and not only did they have the time on a Friday as it was their day off, but they also had a nurse friend who they would take with them to check it out. The man on the phone said it had 31 hours on it, 20 of those hours were testing hours, and apparently, his father only used it for 11 hours before he passed from lung cancer. It came with a regular battery, carrying case, car charger, and plug. My Dallas friends put the money up while my Houston friend and daughter transferred the money.
I was headed to a plant swap the next day. I don’t take home many plants anymore. Mostly I was doing it for my daughter and granddaughter and the social aspect of the swap. I have been going there for years. If I bring things I have to pay my studio interns to help me dig and load things into my van as I get winded doing these sort of things these days, and I’m saving my energy for the studio. Well, my friends from Dallas also used to come to this same plant swap. They decided to drive the oxygen concentrator down for me. I could not believe it. When it arrived, and they wanted to hand it over, I felt like there should be a drum roll or something, maybe the heavens should open up. They handed it to me, and I cried.
I have had it for a day. With it comes the freedom. I do have a concentrator at home with a humidifier and a long cord. It cost me $50. 00 a month plus extra for extra supplies with my insurance. I can get ten small tanks, which also adds cost. I could send this back to the oxygen supply place and use only my portable, but I like having the big concentrator and need the humidifier on there.
However, in the 24 hours , I have had the portable oxygen concentrator this is what I discovered.
No panic— The day after I received it I was vacuuming my house, which is a fine game of jumping over and untangling oxygen cord from the vacuum. I lifted the tablecloth on my front room table. This space is where I keep my extra oxygen bottles. I immediately felt a tightening in my shoulders. These last few weeks for whatever reason I have used more tanks, and there were only three left. Usually, this would make me feel a bit panicked. I can get around 3 hours on a tank at a pulse 2. My kids are moving this weekend which means I’ll be moving around a lot with a tank on my back and it may run out. Will I have to order? Will there be enough time? Then I remembered. Wait, I now have a portable oxygen concentrator, and running out of air is no longer a problem. My body relaxed a bit more in a way that it does when you realize you didn’t even know you were tense.
More energy– when I go back and forth to the studio in my backyard I don’t usually use oxygen. It is a matter of conservation. I’m saving it for travel. On difficult days I’ll use oxygen in the studio if I’m running around a lot, but it means either wearing the tanks on my back or taking the regulator off the small tanks and putting it on the big one in the studio. Honestly since the pneumonia I don’t really need it while working. Though I’m working on small pieces. We will see as I proceed to a large piece in a few weeks.
Because I now have the portable, I charged it up and brought it with me to the studio. I’m working up in the upstairs office. There is no bathroom there, so I have to walk back to the house often. Sometimes if I forget something and have to go back downstairs for it, I get discouraged. I think I know that the extra trips will mean it will be a tiring early day. Today I kept the portable concentrator plugged in and then unplugged it and slung it on my shoulder when I needed to run back to the house. This was so convenient.
I wonder, is the amount of energy that I feel today, is it from having more oxygen during the day? My levels are better than they were when I had pneumonia. Frankly, if I had a 6-minute walk test today to test for an oxygen prescription, I’m not sure I would pass. I’m testing myself on the treadmill. I try not to use oxygen before getting to the treadmill and do an oxygen test. Then I’ll do it after 5 minutes with no oxygen then ten minutes with oxygen. Walking up to the treadmill with no oxygen I’m around 87-92. Of course on the treadmill with oxygen after 10 minutes I move to a 97. That is my highest number. I think 88 is the number required for oxygen on a 6-minute walk test. Still. If I can function at an 87-92, a bit out of breath, but functioning, should I? Today I didn’t have to, and I had a full productive day. The kicker is this— one bad day of allergies, or a bit of congestion and everything changes very quickly.
Freedom
I know now I can fly with this concentrator. Though upon further investigation I still need a prescription to show I need air. What the heck? Really? I think you must also prove you have enough battery life to get to your destination. So it may mean I have to purchase another battery. These are not cheap at $325. – 495.
Sometimes I’m at my daughter’s house, and she says on the spur of the moment, “Mom, won’t you please spend the night?” Lately we both know there will be the conversation of, “Sorry honey I don’t have enough oxygen.” I think sometimes she doesn’t even ask, even though she wants to. Not any more. I’m mobile and air sufficient.
I can go camping. I’m not sure how much longer I’ll be able to camp. I’m not sure how I’ll load the van, and unload the van, but I can camp. I always camp at campgrounds with electricity, so now I’ll have air.
Road trips will no longer be a problem. I don’t need oxygen now while I’m sitting unless I have a coughing attack which means I keep the oxygen ready to go while I drive.
Another freedom is the freedom from the threat of losing my oxygen supply. I’m bound by income, insurance, and doctors prescriptions. Now, no one can take this air away from me. This freedom feels so good.
Inogen G3 back pack is just not as cool as the G4 back pack and because of the size of the G3, they are not interchangeable.
PROBLEMS
The only problem with this oxygen concentrator is carrying it on my shoulder. I work hard with yoga and a weekly massage therapist to keep my shoulders from injury. Sculpting and writing take a toll on them, which then affects my posture. Posture and these shoulders affect how I breath and can make my hands go numb. As you see from a previous post, I had been carrying my tanks in a camelback, which worked great. It also had the advantage that I could zip up the camelback and to everyone looking I was just an active woman carrying a hiking pack. I liked that. If I had to use oxygen, I would be cool doing it. Now I’m stuck with this backpack that shows all the inner workings and what I’m carrying. I’m going from being a cool person that can hide this disease with a zipper to someone who has to have this and carries it in this backpack. The backpack for the G4 is so much cooler. They are not interchangeable because of the difference in size and the placement of the air intake. I bit the bullet and ordered the G3 backpack. Frankly having mobility and hands-free and good shoulders outweigh my need to look a certain way to others. I’ll prove to onlookers my stamina by my actions and staying fit.
The cool looking option for the G4 back pack.
This has been a very long post about a great need met by friends. My backpack comes in soon. Oh and at $100 for the backpack I can hardly believe my friends got that for me as well. I’ll let you know how that goes. Meanwhile, I have freedom.
The Pulmonary Fibrosis Foundation has an Instagram page on which stories are shared. Today this picture popped up and when I saw it I said, there you go here is a woman who is living and doing and experiencing life with pulmonary fibrosis. When I went to read the story I found she is deceased.
How does this help me? I’m living in either denial or faith and I wonder, should I be doing something? Is this getting worse inside of my body. Will I too die in a few years from this? Should I be looking at medication? I know it won’t stop it but only slow it down. I have so many questions. I wish I felt supported by my doctor. I wish I knew what I am supposed to know.
What can I do to prepare my life? Should I live and work toward dying or try to focus on living?
