5 Needles, 2 Xrays, 1 EKG & 6 Hours Later...
And I'm eating at Joe's Crab Shack! That's right my boyfriend and I decided to go out to eat at Joe's since we were in the area and it was a REALLY long day. We both love Joe's, but live an hour and a half away. It's only 15- 20 minutes from my Doc's office though! And by the time I got done today I was worn out and starving!!!
No, it's not the worse day I've had, but still really long! I had my last Clinical Trial Appointment for the current Trial I'm on and received my last IV (drug or placebo, I'm unsure). I only have one more follow up appointment and this trial is over. Doc is already discussing some new ones I could join! I've done 2 clinical trials this year. The first one was testing the outcome of switching the anitbiotic nebulziers by rotating the two back and forth. That trial was simple, since I have already been doing that for years.
But this second trial was new for me. It was an intravenous drug (or placebo) given to me over a 2 hour period in the office. I get one IV per month, which is either placebo or the psuedomonas antibody. While receiving the study drug we do not do our antibiotic nebulizers at home. This shows whether the antibody is helping keep the psuedomonas aerginosa at bay and we can go longer without anitbiotic meds. I did get sick at the beginning of September, but it was a common/ simple cold I caught and my body fought it off after a week of being on CIPRO and doc did put me on antibiotic nebs for 28 days to make sure! Overall, I've enjoyed being a part of research and hope to continue to do so.
Also, since my surgery is TUES the 14th I needed to get my Pre-Operational stuff done for my surgeon! I'm really looking forward to this surgery and hope I don't have to stay over night. My surgeon wants to book a hospital room just incase, which is probably smart. But ugh.
So this morning I woke up early to do my Nebulizers and everything before heading to the hospital (that's 1 hour from home) to do my blood work, X-rays, and EKG that the surgeon needed. I decided to get them done on my way to the Clinical Trial and CF appointment, since the hospital is right on the way. It worked out well, but made for a long day.
During the X-ray portion I walked in and right up to the board and got in the right position. He goes "Oh, you've done this before" I replied "Yep, I'm a Pro" but I was thinking in my head "sir, you have no idea, no idea..." Overall, the procedures all went really fast and we headed to my Doc's office a half hour further away.
So Clinic news... Yeah, my weight is still low, but I'm managing to keep it at 101 now. I'm working 3 x harder to keep it up with this hole in my stomach, so I'm hoping that will be solved after the surgery. But my lung function by Docs standards is 51% (FEV) lung function (note: the trials standards are a couple points higher). Doc said with my weight down, just getting over a cold, and with my stomach problems that a small dipin lung function is very normal. He told me Not too worry, if it dips more or doesn't go back up from 51 to 55 ish by the next appointment then we will take action. That made me feel better. I focus too much on those numbers sometimes. But honestly, sometimes I feel my life equates to those numbers. Those numbers equal years of my life. But I need to not freak out, we will keep an eye on that 51% lung function. No worries folks.
So as you see it's been a long day, but it gets worse. Since the first hospital drew blood from my left arm middle vein ( my ONE GOOD vein) we were kinda screwed for my trial. See I have Cerebral Palsy and no matter how many tries nobody can ever get a IV in my right arm (my veins are teeny tiny on my right side and my muscle spasm). The guy who always does the IVs and has NICU experience with IVS in newborns couldn't even get an IV in on my right arm. He had to dig around (but he was good at it making it hurt less and warning me on big digs). But eventually had to give up and we looked for another vein. I felt bad he was so dissappointed. But my one left arm vein is the ONLY ONE! So he had to put the IV in above the puncture the first morning blood test made. But the scary part was he said we had to push extra saline through to test it and watch it carefully for the 2 hour IV. Why? because the first puncture makes it more vulnerable so it might blow my vein. shouldn't be a biggie, I mean many IVs have blown on my before. EXCEPT that it wouldn't be a normal IV drug pumping into my muscles. It would be an experimental antibody and he wasn't sure what that could do to my muscle in my arm. So I was a little weary and so was he, we just had to be extra careful.
But it went okay, after I was done he took it out and we finished everything like normal. I bruised really bad, but otherwise all seemed good. But on the way to Joes my arm felt really wet. I took my jacket off and my sleeve had blood on, not like a drop, but quite a bit (for a needle mark). I was bleeding through the bandaid still. CRAP! We pulled into Target. I bought a new shirt to wear to Joe's ($6 workout shirt in the little girl's section- booyah!) then I went into the bathroom and changed. I proceeded to wash my stained shirt.... Hope you aren't squeamish cuz I decided to post the picture. I had originally taken it to send to my mom in a text, cuz I always send her everything and keep her updated with everything medical on clinic days!
But, I was just amazed that a simple IV would bleed that much, especially when I'm already taking Vitamin K and I've never had that problem before. But I guess the IV and needle this morning were too much. Which is weird, I've had more than that done before on my one little vein.
But even a little blood wouldn't stop me from enjoying Joe's Crab Shack. After spending from 8-4pm doing medical procedures I felt like the day needed to end with Joe's for dinner.
Then home to eat a piece of raspberry apple pie and mug of hot apple cider and catch up on a TV show I've been watching! Hopefully, the rest of my week is less eventful!
I said this wasn't my worst medical experience, it was far from it. But it was a long day either way.
And I'm eating at Joe's Crab Shack! That's right my boyfriend and I decided to go out to eat at Joe's since we were in the area and it was a REALLY long day. We both love Joe's, but live an hour and a half away. It's only 15- 20 minutes from my Doc's office though! And by the time I got done today I was worn out and starving!!!
No, it's not the worse day I've had, but still really long! I had my last Clinical Trial Appointment for the current Trial I'm on and received my last IV (drug or placebo, I'm unsure). I only have one more follow up appointment and this trial is over. Doc is already discussing some new ones I could join! I've done 2 clinical trials this year. The first one was testing the outcome of switching the anitbiotic nebulziers by rotating the two back and forth. That trial was simple, since I have already been doing that for years.
But this second trial was new for me. It was an intravenous drug (or placebo) given to me over a 2 hour period in the office. I get one IV per month, which is either placebo or the psuedomonas antibody. While receiving the study drug we do not do our antibiotic nebulizers at home. This shows whether the antibody is helping keep the psuedomonas aerginosa at bay and we can go longer without anitbiotic meds. I did get sick at the beginning of September, but it was a common/ simple cold I caught and my body fought it off after a week of being on CIPRO and doc did put me on antibiotic nebs for 28 days to make sure! Overall, I've enjoyed being a part of research and hope to continue to do so.
Also, since my surgery is TUES the 14th I needed to get my Pre-Operational stuff done for my surgeon! I'm really looking forward to this surgery and hope I don't have to stay over night. My surgeon wants to book a hospital room just incase, which is probably smart. But ugh.
During the X-ray portion I walked in and right up to the board and got in the right position. He goes "Oh, you've done this before" I replied "Yep, I'm a Pro" but I was thinking in my head "sir, you have no idea, no idea..." Overall, the procedures all went really fast and we headed to my Doc's office a half hour further away.
So Clinic news... Yeah, my weight is still low, but I'm managing to keep it at 101 now. I'm working 3 x harder to keep it up with this hole in my stomach, so I'm hoping that will be solved after the surgery. But my lung function by Docs standards is 51% (FEV) lung function (note: the trials standards are a couple points higher). Doc said with my weight down, just getting over a cold, and with my stomach problems that a small dipin lung function is very normal. He told me Not too worry, if it dips more or doesn't go back up from 51 to 55 ish by the next appointment then we will take action. That made me feel better. I focus too much on those numbers sometimes. But honestly, sometimes I feel my life equates to those numbers. Those numbers equal years of my life. But I need to not freak out, we will keep an eye on that 51% lung function. No worries folks.
So as you see it's been a long day, but it gets worse. Since the first hospital drew blood from my left arm middle vein ( my ONE GOOD vein) we were kinda screwed for my trial. See I have Cerebral Palsy and no matter how many tries nobody can ever get a IV in my right arm (my veins are teeny tiny on my right side and my muscle spasm). The guy who always does the IVs and has NICU experience with IVS in newborns couldn't even get an IV in on my right arm. He had to dig around (but he was good at it making it hurt less and warning me on big digs). But eventually had to give up and we looked for another vein. I felt bad he was so dissappointed. But my one left arm vein is the ONLY ONE! So he had to put the IV in above the puncture the first morning blood test made. But the scary part was he said we had to push extra saline through to test it and watch it carefully for the 2 hour IV. Why? because the first puncture makes it more vulnerable so it might blow my vein. shouldn't be a biggie, I mean many IVs have blown on my before. EXCEPT that it wouldn't be a normal IV drug pumping into my muscles. It would be an experimental antibody and he wasn't sure what that could do to my muscle in my arm. So I was a little weary and so was he, we just had to be extra careful.But it went okay, after I was done he took it out and we finished everything like normal. I bruised really bad, but otherwise all seemed good. But on the way to Joes my arm felt really wet. I took my jacket off and my sleeve had blood on, not like a drop, but quite a bit (for a needle mark). I was bleeding through the bandaid still. CRAP! We pulled into Target. I bought a new shirt to wear to Joe's ($6 workout shirt in the little girl's section- booyah!) then I went into the bathroom and changed. I proceeded to wash my stained shirt.... Hope you aren't squeamish cuz I decided to post the picture. I had originally taken it to send to my mom in a text, cuz I always send her everything and keep her updated with everything medical on clinic days!
But, I was just amazed that a simple IV would bleed that much, especially when I'm already taking Vitamin K and I've never had that problem before. But I guess the IV and needle this morning were too much. Which is weird, I've had more than that done before on my one little vein.
But even a little blood wouldn't stop me from enjoying Joe's Crab Shack. After spending from 8-4pm doing medical procedures I felt like the day needed to end with Joe's for dinner.
Then home to eat a piece of raspberry apple pie and mug of hot apple cider and catch up on a TV show I've been watching! Hopefully, the rest of my week is less eventful!
I said this wasn't my worst medical experience, it was far from it. But it was a long day either way.
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