Another Last Hurrah

I went to the Ohio State Fair on Sunday. My daughter and her Girl Scout troop won awards for the projects they submitted and I was determined I was going to watch the ceremony. I made it, but I think it is indeed the last state fair, or any fair, I will manage to get to before my transplant.

This is the back of my car and the oxygen it took to spend a day away from home. And, I was only able to do it with the help of my husband, who went back and forth to the car several times to switch out the empty tanks. With the oxygen, my IV pump, a wheelchair (for long distances), and a medic bag, I feel like a traveling hospital. I'm getting weaker and I can accept my limitations or I can kill myself trying to do too much. (I believe that even a healthy person would have a difficult time dealing with everything I have to deal with, especially doing so being tethered to an oxygen tank and an IV pump.)

I tried to take it easy and stayed in the air conditioned youth center. I looked at projects until I had a migraine-like headache and was tired. It was getting difficult for me to keep my oxygen saturation above 90%. Then I sat and waited. Even though I was feeling ill we needed to stay until 6 p.m. in order for them to release the projects to the Girl Scouts. A little after 5 p.m., I explained my condition and asked if they'd make an exception for me so I could head home, but they refused. They told me it is the fair's policy to not release projects before 6 p.m. and claimed if they get caught making an exception for me, they could lose their privilege to be involved with the fair. I understand. Policies and rules are there to be followed and, if they make an exception for one person, everyone will want an exception from some reason or another. Once again, I was faced with the callousness and oblivious nature of those in the Well World.

I'm starting to realize this is why I don't see many people in my condition, or a similar condition, out doing things. We are weak and needy and we need exceptions. We need help and we hesitate to ask again and again. Very few want to make exceptions for us and we know this. So, it's easier to stay home; miss out; and spare us, and our family, the stress and effort it takes to plan, and execute such a plan, for a day outing.

I've had a year full of last hurrahs. It's not giving up. It's being sensible. But, missing out is a very sad thing.

I cringe when I see a swan.

Almost two weeks ago I had another right heart catheterization. Other than some minor pain and a nasty rash breaking out all over my neck (probably from the chemical prep), I got through it fine without sedatives. And, if I have to find something good to say... I will admit, it was better than January's right heart catheterization.

In January, the Swan-Ganz catheter was left in my neck for several days. Now I cringe any time I see a swan, or even hear the word swan, despite it being named after the doctors that invented it. I've included a photo of that nasty device here. It is through a large yellow trumpet-like part that goes in the neck's jugular vein (and is not pictured) that several lumens, each with a different function, are threaded. The main yellow line you see, partly covered by a plastic sheath, is the line that ran from my neck, down the vein, through my heart, and up through my pulmonary artery. That is the line remained inside my heart for several days when I was in the MICU. All the rest of those tubes and such hung to the side of my neck.

The test showed that my pulmonary pressures were down a bit. This proved the medicines have helped to relax my heart. However, the following week I had additional pulmonary testing that revealed my breathing is getting worse. It's harder for me to breathe and my lungs are not doing their job getting enough oxygen into my blood. But, this is the expected course of the PVOD and was not a surprise.

What was a surprise, however, is that the doctors have run across a reason for additional testing. My heart sank. I had hoped we were done and I would be officially listed. They ran some more lab-work while I was there and I'm expecting to go back in a couple weeks for additional testing. I won't go into details now, but let's hope it's just a little hurdle.

July is not over.

I keep thinking it's August. Mostly because July has been a whirlwind, not unlike most of this year. I woke up early this morning because of the storms. And, then... the electricity went out. The hum of the oxygen compressor stopped and it beeped out an alarm. I hooked up to a portable tank but I could not sleep because I was too scared I'd run out of oxygen and not realize it. I felt so vulnerable. I need the oxygen compressor (that uses electricity) or a tank of oxygen and I'm on an IV med that must stay cold. I thought about the medicine in the refrigerator and the ice packs I use in my IV pouch and I hoped First Energy's website was correct about their estimated repair time.

It's the same vulnerability I felt when I was caught in a storm last Wednesday on the way back home from the Cleveland Clinic. I had had a right heart cath late morning and my friend was driving me home. After a stop to eat lunch, we headed west on the turnpike. What we didn't realize was that we were heading towards a very dangerous storm. A little past the Sandusky and Norwalk exits we encountered lots of wind, rain, lightning, and hail. And, I could hear the tornado sirens. We turned on the radio and heard the weather service announcing tornado activity and to seek shelter right away. Cars were pulling off on the side of the road, including under the overpasses, which is dangerous in tornado weather. The drainage ditches on the side of the road were completely full of water. My friend put on the hazard lights and followed a semi and we slowly inched ahead. We agreed we really had little choice and that we'd gauge our decision on the reactions of the semi driver since he or she would have communication with those up ahead on the road. We felt it was just as dangerous to park on the side of the road as inching ahead at snail speed.

We reached the Commodore Perry Service Plaza and found what was perhaps the last parking spot left in the whole place. But, we were stuck in the car with the wind whipping and the lightning zapping all around. We knew if we stepped out, we'd become instant lightning rods. (And remember how I calculated my chances of getting hit with lightning was greater than getting some rare, random, lung disease?) So, we sat. Again, I felt vulnerable. I was hooked to an O2 tank I desperately needed. I couldn't leave it in the car and run. Actually, I would be unable to run with or without it.

Once the lightning calmed, we decided to make it into the service plaza. We walked in and everything seemed very quiet. There were a few people standing and looking around, looking just as confused as we were. The restaurants and the gift shop were closed up and dark and the place seemed relatively empty. That was just a brief moment before a lady in a blue uniform came out and announced that people could now leave at their own will, as the tornadoes had passed. Then the place filled with people (and their pets) who had waited out the storm in the plaza's storm shelter.

I told my friend she deserves the best driver award for driving us past a tornado. It's probably a good thing she was with me that day as she is the most cautious and calm driver I know. As for the storms this morning, First Energy had the electricity running again before the estimated repair time. I was able to hook back up to the oxygen compressor and its hum lulled me back to sleep.

Freedom comes with tubes attached...

In my quest for more freedom, and within the boundaries of what my insurance will help pay for, I've gained the privilege to use an iFill system in my home. This only means I now have an E tank (approximately 25 inches tall and weighing over 7 pounds empty) that I can fill at home. It's too big to carry, so I have to wheel it around on a little cylinder cart. But, I suppose that's okay, as my back hurts anyway from the extra weight of carrying around the CADD Legacy pump and medicine cartridge sandwiched between ice packs. Now I just have to struggle getting this tank and wheeled cart up and down the porch steps and in and out of cars. I also have to maneuver it over huge cracks in the sidewalks and avoid potholes in parking lots.

To fill a tank I have to place the valve of the tank into the iFill system and turn the machine on. The machine then pumps concentrated oxygen from the air into the tank. While it does this the machine roars and clicks. It sounds like a trash truck is in my home, running it's engine. It's loud. In fact, it's too loud to run at night. And, the E tank takes over 350 minutes to fill. That comes to about 6 hours. (When I filled my E tank, it seemed to take longer than that.) I've also been warned that the iFill is very finicky. If the house gets over 80-degrees it will probably heat up the little sensor inside and it will crash. Then, I will have to call the iFill experts in to reset this sensor gizmo thing.

Yesterday afternoon we had our year-end celebration for our Girl Scout troop at the local botanical gardens. The girls had a fused glass class and then we presented them their one-year stars and bridging awards out in the garden. It was a beautiful day and my tank lasted all afternoon. I didn't have to have a friend run back to the car for the extra tank and didn't have to watch the gauge and worry about what time I needed to leave. However, as I type this, I'm having to refill my E tank. The iFill machine is roaring and clicking as it sends rhythmic vibrations across the floor.

Freedom?

I can certainly be thankful I live in a country and in an era with such technology that allows a patient to have oxygen at home. Had I lived one-hundred years ago, I'd have to seek out an institution that provided oxygen. I'd be away from my family and perhaps bed-ridden.

Freedom? Yes, I suppose we can say that.

Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.

Oxygen

It has been a month now that I've been on oxygen. I think I would prefer to complain about how inconvenient it is, but it helps my oxygen saturation level. So, it is difficult to gripe about something that plays such an important role.

I haven't ventured out much since getting on oxygen. But, when I have gone places I've noticed people looking at me. Usually they quickly look away before I can give them a reassuring smile. Being that I'm in my late thirties, I assume they may wonder why I'm on oxygen. No stranger has asked yet.

The first few nights I felt depressed about being hooked up to a big air compressor with tubing in my nose. I hated listening to the hum, click, swoosh, hum, click, swoosh of the machine that has taken over the living room. I avoided looking into mirrors. I suppose, like those who see me when I'm out, I too was avoiding my response. The tubing that snakes across my face is, for the most part, the only obvious outward sign of my illness.

Most people walking around with oxygen are older than I am, but there are young people on oxygen for various reasons. I'll leave you with words from Christine, a 43-year old who will be on oxygen for the rest of her life: "I want to let people know that even those of us who use oxygen, whether it's part of the time or all of the time, our lives are what we make it.... Life is worth living no matter what your challenges are. My challenges get me down but I don't let the keep me down. I wear a smile and look forward for those happy days..." You can learn more about Christine and why she is on oxygen at her blog, Living on O2 For Life.