Reporting...

I am due to report in... here in the blogging world. But, there seems to be little to share. I feel like there should be some substance, some point, some news behind a post rather than me getting on here and babbling.

I get very little done each day. I do but a small fraction of what I would like to do... and what I used to do. I make sure my daughter is doing her schoolwork. I spend a few minutes prepping it, checking it over, and helping her with things she may be stuck on, or spend more time with her on the more involved projects. Then, I take care of the most pressing issue of the day... like calling insurance companies or ordering and organizing medicines. A lot of times I try to nap on the couch in the afternoon. At times I am successful and it makes me feel better in the evenings. I take oral medicines four times a day and have to change the cassette on my IV pump once a day. (My husband has been doing most of the work mixing the medicine in the evenings.)

If I want to do something, like bake cookies, or go somewhere for a few hours, I have to plan ahead. When I go out I have to have a ride and help, and I have to save my energy. I have to make sure I take several oxygen tanks and my medical bag. Often, I'll try my best to schedule a down day or two between outings. And, depending on how I handle the outing, I may need a couple days to recover. The weeks I spend a day or two in Cleveland are the worst.

This month I have been to two different department stores for the first time in weeks. And, the only reason I've been able to do this is because I finally broke down and accepted the fact I could... er, need to, use the electric scooters at the stores. My oxygen tank proves to be unwieldy though and makes it harder to maneuver around the store. Most of the aisles are impassible and many people seem to not even notice, or care, that I am trying to get by, or that I'm stuck waiting until people allow me through an opening big enough to accommodate the scooter. It feels a bit like when, stopped at a crosswalk one will wave some slow person through, and then for the next five minutes a cascade of people use the crosswalk while one tries to patiently wait.

Just going outside to get a few minutes of fresh air proves to be too much trouble now. The joy no longer outweighs the effort or the energy I have to spare. I have to disconnect my oxygen from the big compressor, hook up to a tank, and preferably, make sure my IV line is nicely tucked away so it doesn't catch on any protruding objects. By the time I walk out of the house and down the whole four steps on the porch I can feel my oxygen saturation dropping and my poor heart thumping. My poor heart. It's so tired of trying to overcompensate for the lungs.

In the evening I work my way upstairs, stopping twice for breaks, breathing, coughing, letting my oxygen saturation bob back above 90% before tackling the next few steps. Once upstairs, I prep myself for a shower.

Showers are an ordeal. In attempts to keep them dry, I cover the joints on my extension tubing and cover the catheter site that goes into my chest. I wipe down the catheter area with alcohol and a skin barrier wipe and then I cut the Aqua Guard cover down to fit well enough and add extra tape. The Aqua Guard covers are a whole lot bigger than my site and If I leave them as they are, they just pull up and get everything wet. Then I'd be forced to change the whole dressing at the site for fear that if I didn't, I'd get an infection. I have to take showers with my oxygen on. I hang my IV pump on the towel bar. The tubing snakes out of the shower and water trickles down, making a puddle of water on the bathroom floor.

Going to sleep at night is becoming more of a challenge. I'm still doing well cutting out the sodium, but with the warm, humid weather, I've had a hard time limiting liquids. I miss guzzling water. Even though I am not guzzling liquids, I find it difficult to resist several small glasses of cold tea each day. Of course this adds to the water retention, the swelling, and just general achy, puffiness. Lately it has been a toss and turn battle, trying to find a spot where it feels comfortable enough to attempt to sleep. If I were not sick I could get up and read a bit or work on a project. But, I know better. Even if I cannot sleep my body needs to just rest.

If I can get settled and somewhat relaxed, my oxygen saturation goes up and my heart rate slows down. I feel better, even more normal, during that flitting moment between being awake and drifting off into sleep. I suppose, it's as normal as I am going to feel with an oxygen tube secured to my face and an IV line running from my chest to the pump on the bedside table. It's this quasi-dream-like state that reminds me of what used to be, before the loss of lung function and before the heart failure. It also reminds me of the hope we hold close, knowing that one day I will come home with new lungs.

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.

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.