The big switch

My pulmonary doctor said we could look into switching to Veletri, from Flolan, after my right heart cath. As promised, he had the wheels in motion by the time I was home. Last week an Accredo nurse came to my house to monitor me during the switch.

Basically Veletri is the room temperature stable version of Flolan. It's the same medicine but contains a preservative that reduces the need of the medicine cartridge to be sandwiched between ice packs constantly (with the exception of those really warm days). Since Veletri has a different chemical structure, the nurse monitored my vitals for a short time to make sure I had no adverse reactions.

Several cartridges of Veletri can be made at one time and stored in the fridge until I am ready to use them. So now, when I travel to appointments, I should not have to mix medicine away from home. I can plan ahead on what days we will mix cartridges and then have some flexibility on the other days.

Not having the constant need for ice packs is liberating. It also lightens the IV pouch by about a pound. And, that makes a big difference when I must carry the IV pump with me everywhere.

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.

Family Fun Night

Thank you.

I wish there were more meaningful words to express the thanks I feel my family and friends, and even a handful of people I had never met before, deserve. Family Fun Night was successful and the kids had a blast. There were bounce houses, carnival games with prizes, a silent auction, baked goods, food, and more. I was completely overwhelmed by the attention and the outpouring of love and support my family received.

Thank you, thank you, thank you.

Seeing red...

I've heard stories, from others with permanent IV lines, about the tubing disconnecting, the IV pump beeping in the middle of the night, medicine cartridges running empty, and waking up in either a pool of leaking medicine, or worse yet, a pool of their own blood. One story came from a friend who forgot to clamp the Hickman tubing before disconnecting the extension tubing. There's a little device, mine is called a BD Q-Syte, that goes on the end of the tubing that is spring-loaded and holds back the powerful pressure from one's heart. It is replaced every week to reduce the risk of infection. When a person forgets to clamp and takes this device off, blood shoots out. And I've heard, it's a lot of blood. That's why, when I change this little extension piece, I chant: "Don't forget to clamp."

Yesterday my BD Q-Syte malfunctioned on the way to my mother-in-law's house. I felt something wet on my shirt when I realized it was blood I pulled the tubing out of my shirt. Blood and medicine were leaking from the joint. We pulled up to the house and hurried in to change the piece, which we assumed had gone bad. (Thankfully I am a good patient and carry my suggested medic bag, that includes extra medical paraphernalia, tubing, a backup meter, batteries, etc., wherever we go.) We acted quickly and my husband got the Accredo nurse on the phone. She assured us we did the right thing and that the line would eventually run clear. Sure enough, the blood in the line was eventually pushed back by the medicine but it had been a relatively frightening experience.

This is the tubing I keep tucked in my shirt. The white tubing (and clamp) is part of the Hickman catheter that goes in my chest and directly to my heart. The round thing on the extension tubing is a filter. The joint between the extension and the white Hickman tubing is the BD Q-Syte device. That is the piece that malfunctioned and caused blood and medicine to leak out.

Getting my ducks in a row...

After two days of testing and appointments at the Cleveland Clinic at the end of May, I arrived home in a bit of a fog. Shocked, but yet, not surprised. I felt better after a hug from my daughter and a night in my own bed.

I was told I don't have long without getting new lungs. I have to finish the testing and get listed. Soon.

June was a blur. I overdid things, especially in the later part of the month. And, I paid for it... ill and swollen, and it has been taking several days to recover.

Remember those two bags I talked about? I'm still packing. Most days I feel like I am trying to beat the clock and doing so with limitations due to my medical condition. I'm getting my ducks in a row, making end-of-life decisions, going through personal possessions, and working on scrapbooks. I won't get everything done. But then, that is what the other bag is for. Everything else gets packed in there. Sentences around here are frequently started with "When I get my new lungs" and "When I can breathe again."

Not all ducks are orderly. There are a few that weave in and out, and another that always stops to look at something and falls behind. I'll probably never get comfortable with this uncertainty but I must accept it. I may not know where I am going, and my ducks are in a, er... sort of a row, but I must paddle onward.