So this is kinda in response to Ronnie's post today at runsickboyrun.blogspot.com about getting his PICC placed yesterday and I'm looking forward to his post tomorrow about why he doesn't want a port placed and this is my PICC and port story.
For the laiman that read my blog PICC's are central lines that are placed in a vein in the arm and runs a line up almost all the way to the heart and can last for a long period of time but are not permanent. And a port is a permanent line that is placed in the arm or the chest that will last for years.
The port conversation has been coming up with this stay for me, because they had a hard time placing my PICC in my right arm, they had to balloon my vein to get it in and said my right arm is not accessible after this and my left arm is not available anymore either, so the dreaded port thoughts are here. I had a port when I was younger and the story goes.. I had it placed when I was 16 the year 2000, I was very against it at the time but at that time PICC line placement was not as "easy" as it is now, so it was my only option, so in honor of vanity I had it put in my upper left arm where it was not very visible. After getting use to it and seeing how easy it was for Iv's I loved it and took very good care of it. Fast forward to 2007... I went in for a clean out and my port was not working properly, it wasn't flushing well and it burned in my arm which was not normal. They stopped using it, I did not know what was wrong with it until the doctor came in and started asking all these strange questions, like had I ever had a heart cath, and any heart operations. I was like why are you asking all these weird questions, and then they showed me the x-ray, a 7 inch piece of my port had broke off at my shoulder and went into my heart, lodged in the pulmonary artery to be exact. They did not know how long it had been there since I had not had an x-ray since 2005 (bad keep up that was my fault) they did not know if it would move anymore, or if it had blood clots around it that would move and cause problems, or cause problems when they tried to remove it. It was SCARY I was afraid I would go to sleep and it would move or a blood clot would move and I would not wake up. So that was the next step how would they remove it and at what hospital because Sparrow in Lansing MI where I was had never seen anything like it. So my doctors called and made arraignments to go to University of Michigan in Ann Arbor MI and a heart doctor did a heart catheter with a special made tool with grabbers on it and went in and pulled it out, I was awake the whole time a little loopy with relaxants but still cognitive enough and watched on a monitor which for me was really cool for me because I like to see whats going on when they do stuff to me. But it came out ok and I recovered, and they took the other half out at Sparrow. So now I'm at a point where my next clean out may require a Port again, and I have mixed feelings about it. I know how great it was and I liked the easy access and not having to wait a day or two to get a PICC placed, but then I think about what happened and it scares me to get one again. Ultimately I will do what I have to for the better of my health and my guess is that will be a Port again some day, but I will cross that bridge when I get there.
Saturday, April 17, 2010
So I'm in the hospital, my life with CF has included these hospital stays about once a year for the majority of my life. There would be times when I would go longer then a year and at one point I went over 2 years before I had to go in. They are what the Cf world calls clean outs, we may not be real sick or look sick or even sometimes feel sick, but our Pulmonary Function Tests (PFT's) the test that measure's our lung function may be down from what we call our baseline which is how well we do when healthy or our most resent highest numbers. Most recently for me this is when I get a cold or some other run of the mill sickness and it ends up going into my lungs and I feel like crap. I usually call the office or go in to my regular doctor's and get a prescription for an anti-biotic to try to get rid of it with that and more chest therapy at home sometimes it works, sometimes it don't and that's how I ended up "In the Hole" as we like to call it. Colton ended up with pneumonia and about 2 weeks later I ended up with it. Pneumonia is not usually contagious but with my compromised immune system it managed to spread to me. So all my life I have had these clean outs, and as a kid they really sucked, they suck as an adult too, but it's much worse as a child being jabbed with neddles, Iv after Iv staying in bed all the time and not always understanding why. But as I got older even if I didn't like it I began to understand why and although it still sucked I was better at doing it, that is if you get better at going in the hospital. But the thing is I got better or it got easier because of my parents. They are amazing people and I could not have done it or do it without them. I was raised as if I was "normal" like I was the same as my brother (who does not have CF), not aloud to use CF as an excuse to not do things or go after my dreams, not aloud to feel sorry for myself, that I would live a long life even when they were told I would not see High School, and to be and always do the best I could, because even though I had CF my life was still a blessing. But the lesson that stuck with me the most was that no matter how bad your life is or have it there is always someone who's life is worse or has it worse. That has stuck with me through my whole life the one lesson that I carry with me all the time, so that when and if I feel sorry for myself I can think about that and it makes me think twice and stop feeling sorry for myself. So as I have this stay in the hospital and it sucks and I miss my husband and my son, and he cry's because he misses me and I get sad and wish I was home, I go back to that thought, because somewhere in this hospital and probably more then one place in this hospital, someone is saying goodbye to a loved one or a mother never gets to go home to her baby, or a mother never gets to take her baby home because as bad as I have had it that would be worse and I feel bad for those people when I think about it, and that is why no matter how much it sucks or how bad I have it I am thankful for what I have, even if I have CF, because it could always be worse.