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Saturday, January 31, 2009

Got Spoons?

So as most of my friends, neighbors and Mom know by now, I've been doing a lot of online reading. Mostly blogs and message boards. Mostly about transplant experiences. I've seen multiple people's scars, learned of their struggles before transplant, wiped tears from my eyes as I read about their recovery, and had this strange mix of jealousy and eagerness as they talk about life after transplant. It's funny, the more I read about it and talk to people... the more I want it.

Even after reading about horrible experiences people have had during their recovery - bad hallucinations, extreme pain, early rejection battles, etc. - I want this. Even if it's just a month of easy breathing... it has to be better than where I'm at. Right now I live a life of waiting on the sidelines. I'm a spectator in my own life and I'm just sick of it. Which brings me to the "Spoon Theory." It's a concept that's been around for a while but was brought back to my attention after reading a fellow CFers blog. She brought her life into the theory and I thought I would do the same. For those not familiar with the theory, check here

For those who are lazy (tee hee), I'll sum it up quick. A girl with Lupus goes out to dinner with a friend who wants to know what it's like to have Lupus. Quickly the girl gathers all of the available spoons in the diner and hands them to her friend. She then explains that everything during the day that the friend did cost the friend a spoon. From showering to getting dressed to walking to her car to eating her dinner or even skipping a meal... each cost a spoon. By the end of the day, the friend was down to one spoon and began to realize that all parts of life is a planned choice.

So on to me. I've noticed over the last few years, the number of spoons that I start with in the morning has slowly declined. For arguments sake, I'm going to assign numbers... but who really knows :) When I was at my healthiest, I think I was about 15 years old. It was before the yeast, before the bad pneumonia which took so much, before I quit seriously dancing. I think at that point in my life I had about 20 spoons. Maybe what happened was instead of borrowing from "tomorrow", I borrowed them from 10 years in the future.... oh well...

But each year took more and more spoons away from me. And these weren't just "spent" spoons, these were "lost" spoons. I think in comparison, I have maybe 10 spoons now. Here's a small peak into a typical day for me...

  • I get up in the morning (some days I get dressed, some days I take a shower. You can tell how well I'm feeling by these 2 things alone.), unhook from my machines (BiPAP, tube feeds, turn oxygen off... it's a small production) and I go down stairs. -1 spoon unless I shower and dress, then -3. But on average, it's just -1.
  • Now I do a breathing treatment. While I know this helps me, it's one of the hardest things I do of the day. It's a conundrum. I need to cough so that I can clear my lungs and breathe better, but in order to clear them I cough so hard that I can't breathe. -2 spoons for having to prepare and do treatments.
  • I eat lunch and try to make a decision on what to eat. If I did a good feed at night, I'm not hungry until late in the afternoon. If I did a smaller feed I'm hungrier earlier, but again... another spoon is lost to make the additional meal. It's a balancing act. So most days I don't eat breakfast or if I do, it's a yogurt cup. So there's another spoon. Unless it's a large or heavy meal... then it's -2. and with CF, they're always telling us to eat large and calorie dense food. Great, but the more full I am the harder it is for me to breathe, the larger the meal, the harder for me to finish. So, on average, -2 spoons for eating. I'm down to 5 spoons left and it's only about 3 in the afternoon.
  • Sometimes I can take a nap and conserve energy, most of the time I lay around and watch bad TV reruns and wait for dinner. But let's not forget the afternoon breathing treatment. -1 spoon ( it's not as hard as the first one in the morning)
  • The rest of my family gets home and it's time for dinner. They usually do all of the work - preparing the meal, setting the table, doing the dishes - and I just sit and watch and wait. -1 spoon for dinner.
  • Then comes the sitting around the TV, sometimes sitting on the computer, very lazy , relaxing activities which allow me to conserve my energy for the rest of the night.
  • When I'm tired, but not too tired, I finally make it up the stairs, and prepare my nightly machines. I pour formula for my tube feeding, I put fresh water into my oxygen humidifier, more water goes into my BiPAP machine, do my nightly pills, and my final breathing treatment. - 2 spoons. This leaves me with one spoons for the night... just in case I have a coughing fit in the middle of the night, or a bout of insomnia. Let's not forget the mid-night bathroom run which requires unhooking from my machines and then re-hooking when I get back to bed. Heaven forbid that more than one of those things happen!

Just like the girls with Lupus, some days I may wake up feeling good. My chest doesn't feel so heavy, I'm not so congested. I slept great the night before and I have the strength to strap on the O2 and get my butt out into the world of the living. I have "extra" spoons that day that don't cost me spoons from tomorrow. There are other days I wake up and I don't have as many spoons. Those days I don't eat as well and I require a lot more care. I need someone to set up my night machines, I need someone to prepare my meals. But I'm lucky. I don't and WON'T need someone to bathe me or dress me. I may have given up a lot during my transplant journey, but won't sick to the point of being an invalid. I have to keep moving, I need to keep moving. If I can push myself now when I can't breathe, pushing myself when it feels like I've been run over with semi, but taking deep beautiful breaths, should be cake... right?

Thursday, January 15, 2009

First Appointment While Being Listed

On Monday Mom and I left for Cleveland. Every 2 months until I get transplanted the clinic wants to check in on me and update my status. I also need to notify them of any changes because that can alter my position on the list.

So Tuesday morning I began the routine of bloodwork, chest xray and then PFT. My FEV1 is holding steady at 24%, I gained a few feet on the 6 minute walk but am on oxygen all the time now, xray looked the same as last time, and all of my other organs are working well. Dr Budev was very pleased with all of that and said that I'm in the perfect position to be transplanted. I need to try my hardest to keep the lung function that I have and work my body as much as possible. By doing this I should be able to recover easier and overall, do better. The only thing she'd really like is for me to gain a few more pounds... but that isn't anything new to my life. I gain one pound, they wanted 4.... but she is happy that I'm at least maintaining my weight.

Tuesday was my first day wearing oxygen out in public. I figured what better place to not get funny looks. I'm able to come off of the O2 sometimes when I'm just sitting on the couch, but any movement causes my sats to drop and on goes the nasal cannula. It's just so hard to hide an oxygen tank or condenser when walking around the grocery store.

Anyway, I signed some papers for some research studies. One is for Tcell something... I can't remember. The only they asked is that they wanted to take an extra vial of blood when I get bloodwork done there and that if there's any left, some of my BAL fluid during bronchs. I figure, it doesn't change anything that I'm doing and it helps them, why wouldn't I sign?! The second one is for a new procedure with the transplant. I haven't mailed the form back in, but I think I'm going to do it. Right now at Cleveland, they only connect 1 of the 2 blood vessels that feed the lungs. It's an easier procedure and there's less risk since you're only connecting one blood vessel to another, not 2. Dr. Petterson is from Denmark and has been connecting the 2nd vessel over there for a while and wanted to incorp. his process in at Cleveland, but needs approval. They've seen quicker recovery time and better longevity with attaching both vessels, but it comes with the risk of the vessel detaching and hemorrhaging. Overall the risk isn't that much more than the current procedure. I dunno. I guess if I'm willing to take such a big leap of faith with the transplant in general, this is just a little step. Dr. Budev feels strongly that connecting both vessels will become standard protocol at Cleveland in a couple of years when they have their research completed.

She also said that she thought I would get transplanted soon. They've already done 6 (I think... long day, I can't remember exactly) and she said she would expect in the next 2 months. I got the green light to go back to school and work as a Medical Technologist after tx and I got the OK to reconsider the pill instead of getting my tubes tied just yet. I just wasn't ready for that mentally.

We then got in the car and attempted to come home... yes, I said attempted. There was limited visibility on the road due to snow and then Mom's car started acting strange. We got off the highway and found an autozone. They did a free diagnostic test and sent us to a Superlube to get the car worked on. While these people were a little strange, they were kind enough to get the car in and fixed in under an hour. Mom had to give them a little more info about me than I cared to share... but I had to sit in the waiting area doing my IV vancomycin.... we were already beyond personal in my book. I explained to them why I was doing IVs and going to Cleveland when I live in Cincinnati. Turns out they had a guy who worked there a few years back who has CF. He got sick this time every year and had to take 2-3 weeks off work (Gee... wonder what he was doing ) It was just a strange coincidence. Out of all the places we could have gone to, we ended up at one where people knew what CF was. Well, a couple of them. One of them asked if I was sick because of smoking. I should have said yes... maybe have deterred some of those men from continuing their nasty habit.

Ok, so my meds are all done and I'm beat. All the IVs and benadryl and treatments and traveling... I can't wait for Tuesday to come and for me to be finished!