All the Updates:
Well, to update you from my Colistin problems last week. No, I never got my Colistin. They still couldn't give me an update. They said there was nobody there that I could talk to that would be able to solve it. They said they would contact me when it was fixed, that was on Monday.
I wasn't going to hold my breath. I called Doc Monday and explained to him that Colistin sounds like it wasn't going to happen and I was just getting worse. He called Tuesday saying they could see me first thing on Wednesday.
Wednesday (yesterday) was my 31st Birthday, BUT I just want to get better. Being healthy for Andrew, being a future mom (foster/adoption), and being around for family and friends is WAY more important than whether I have a "Good" Birthday. So I agreed. (I posted a Vlog on YouTube about it). I was frustrated to drive all the way up there (took 4.25 hours) then we'd have to drive another hour to the hospital if admitted. Getting up at 4:00 am is never a happy moment. But we did it, because I needed to do it.
Once at Doc's he did breathing tests. No, I don't know what my numbers are. He knows I'm lil obsessed with them. If they are low at all (it bums me out and I worry). I try to always be realistic, but this is my LIFE we are talking about. So I agree with him not telling me. He never says " I'm not telling you." He is just clever and brushes over it, by starting out by discussing the treatment. So when they came back in they just started discussing hospitalization and med routine. I knew they were worse than the week before's clinic, I felt worse. Also, while I was doing the tests I was wheezing and rattling as I blew into the machine.
We left Doc's with enough time to stop somewhere for lunch. Joe's Crab Shack is right on the way and only 10 minutes from the hospital. So we used my free Bday appetizer email :-) I got my usual KJ Steampot, Andrew got his fish tacos, and we had our calamari for our App. YUM!!!!
Andrew knows I LOVE my Seafood! Also, my parents (being awesome like always) came up to visit from 4pm- 8pm the evening of my birthday (1st night in hospital) and are staying in a hotel nearby so they can spend tomorrow with me too! My mom brought my gift up! She bought terracotta pots, a green metal washtub, a decorate stand up sign, a lil decoration that sits in one of the pots and organic herb seeds. She knows I love gardening! So mom put together my own lil indoor herb garden! I planted 3 herbs last year. My chives grew all winter long (so proud). Okay, back to hospital.
Well, it took 3 nurses 6 attempts total to access my mediport. I can't blame them, it's in my right breast. So it moves around a lot. It's like a target, you have to line up the port in the right spot, and get the needle right in the middle. It got a little bruised and it hurt 4 of the times they tried to access it, but overall I won't complain. Hey, nurses gotta learn, and I have an old port, so I gotta deal.
The plan is doing Tobramyacin IVs 1 x a day and Aztreonam (3x), plus a IV steriod dose daily. Plus bump up nebs to 4 x a days with an extra hypertonic saline. I know IVs in 2015 didn't really bump my numbers up that much and overall the last 2 years I have been low to mid 50s. I was mid- high 50s and even reached low 60s in 2012-2014. But, haven't since. So I really need this to work. I do not want my new "regular" numbers to be low 50s - high 40s.
Doctor said to keep calling insurance and tell them I'm hospitalized, explaining to them why Colistin could have prevented it, etc. So I did. Well, we got a little closer. The answer I got from Insurance was "Well, we re-submitted your information. And now, the pharmacy can run it...But it's saying you owe $1500. We know that's not right as it should be zero, since you met your deductible & out of pocket. We are working with the pharmacy to try and correct this. Feel free to call us back whenever you want an update, but we will call you once it is fixed" --- Are they for real??? Do I have this BAD of LUCK or are they lying to me so they don't have to pay it. I know Insurance can be tough, but the people I talk to on the phone are real people, just doing their job as a Customer Service Person. That's where I struggle wrapping my head around the situation.
To make matters a little or lot worse. I'm super nervous now. Which is why I'm writing this blog at 3am, instead of sleeping. I needed to get everything off my mind. You see, tonight's midnight dose of med wouldn't run through my IV. The machine says its occluded (meaning blocked), we checked the tubing, etc. It's gotta be my port. UH OH! I hope to goodness my port is not screwed up. Doctor said hold off for now, let me get through the night and sleep (which I did for 3 hours). They are having someone come look at it and try to fix it in the morning. I can't help but think:
- Will they have to take needle out? What if they have trouble accessing it again? 6 more trys?
OR worse what if it was hard to access BECAUSE it is going bad. It has been inside me for 20 years this spring. UGH! They don't typically last that long.
I'm not usually nervous of surgeries (although I'm sick enough we had to cancel my eye surgery, so prolly not a good candidate for surgery right now), BUT honestly this is the 1 SURGERY that freaks me out!!! That port is in my chest, the channel of catheter runs up into my neck through a large artery. I just think cutting open a large artery in my neck sounds horrifying. Can't even deal. For the first time ever I feel like I almost had an actual panic attack over something medical. I woke up and started balling my eyes out. Andrew hugged me and calmed me down. But, I decided to blog to get it all off my mind.
But seriously, I'm saying every single prayer right now. Just hoping that in the morning this port works.
I went into the bathroom and looked at it in the mirror. It's not swollen or red. I'm hoping just the vest shook me a little too hard and it caused the needle to back out off the port wall a bit. I pushed down on it a tad.
I'm honestly hoping that did the trick and they can leave this needle in. I really can't handle that right now. I'm stressing over my job too. My license renewal is at the end of this Month. I am signed up for the renewal course next week, I called the person in charge of it at my company, but waiting for them to call me back. So it's just bad and stressful timing for everything!
Anyway, let's all hope tomorrow morning my port works again, I hear back from work about the classes, and all goes smoothly after. Well, that's all for now. Going to try and fall back asleep now!
Oh and Thank you for all the Birthday Love. Andrew being off work and spending a whole day with him, going for a nice lunch, and visiting my parents... a girl couldn't really ask for much more
*stay updated with my hospital stay on facebook and twitter.
Well, to update you from my Colistin problems last week. No, I never got my Colistin. They still couldn't give me an update. They said there was nobody there that I could talk to that would be able to solve it. They said they would contact me when it was fixed, that was on Monday.
I wasn't going to hold my breath. I called Doc Monday and explained to him that Colistin sounds like it wasn't going to happen and I was just getting worse. He called Tuesday saying they could see me first thing on Wednesday.
Wednesday (yesterday) was my 31st Birthday, BUT I just want to get better. Being healthy for Andrew, being a future mom (foster/adoption), and being around for family and friends is WAY more important than whether I have a "Good" Birthday. So I agreed. (I posted a Vlog on YouTube about it). I was frustrated to drive all the way up there (took 4.25 hours) then we'd have to drive another hour to the hospital if admitted. Getting up at 4:00 am is never a happy moment. But we did it, because I needed to do it.
Once at Doc's he did breathing tests. No, I don't know what my numbers are. He knows I'm lil obsessed with them. If they are low at all (it bums me out and I worry). I try to always be realistic, but this is my LIFE we are talking about. So I agree with him not telling me. He never says " I'm not telling you." He is just clever and brushes over it, by starting out by discussing the treatment. So when they came back in they just started discussing hospitalization and med routine. I knew they were worse than the week before's clinic, I felt worse. Also, while I was doing the tests I was wheezing and rattling as I blew into the machine.
We left Doc's with enough time to stop somewhere for lunch. Joe's Crab Shack is right on the way and only 10 minutes from the hospital. So we used my free Bday appetizer email :-) I got my usual KJ Steampot, Andrew got his fish tacos, and we had our calamari for our App. YUM!!!!
Andrew knows I LOVE my Seafood! Also, my parents (being awesome like always) came up to visit from 4pm- 8pm the evening of my birthday (1st night in hospital) and are staying in a hotel nearby so they can spend tomorrow with me too! My mom brought my gift up! She bought terracotta pots, a green metal washtub, a decorate stand up sign, a lil decoration that sits in one of the pots and organic herb seeds. She knows I love gardening! So mom put together my own lil indoor herb garden! I planted 3 herbs last year. My chives grew all winter long (so proud). Okay, back to hospital.
The plan is doing Tobramyacin IVs 1 x a day and Aztreonam (3x), plus a IV steriod dose daily. Plus bump up nebs to 4 x a days with an extra hypertonic saline. I know IVs in 2015 didn't really bump my numbers up that much and overall the last 2 years I have been low to mid 50s. I was mid- high 50s and even reached low 60s in 2012-2014. But, haven't since. So I really need this to work. I do not want my new "regular" numbers to be low 50s - high 40s.
Doctor said to keep calling insurance and tell them I'm hospitalized, explaining to them why Colistin could have prevented it, etc. So I did. Well, we got a little closer. The answer I got from Insurance was "Well, we re-submitted your information. And now, the pharmacy can run it...But it's saying you owe $1500. We know that's not right as it should be zero, since you met your deductible & out of pocket. We are working with the pharmacy to try and correct this. Feel free to call us back whenever you want an update, but we will call you once it is fixed" --- Are they for real??? Do I have this BAD of LUCK or are they lying to me so they don't have to pay it. I know Insurance can be tough, but the people I talk to on the phone are real people, just doing their job as a Customer Service Person. That's where I struggle wrapping my head around the situation.
To make matters a little or lot worse. I'm super nervous now. Which is why I'm writing this blog at 3am, instead of sleeping. I needed to get everything off my mind. You see, tonight's midnight dose of med wouldn't run through my IV. The machine says its occluded (meaning blocked), we checked the tubing, etc. It's gotta be my port. UH OH! I hope to goodness my port is not screwed up. Doctor said hold off for now, let me get through the night and sleep (which I did for 3 hours). They are having someone come look at it and try to fix it in the morning. I can't help but think:
- Will they have to take needle out? What if they have trouble accessing it again? 6 more trys?
OR worse what if it was hard to access BECAUSE it is going bad. It has been inside me for 20 years this spring. UGH! They don't typically last that long.
I'm not usually nervous of surgeries (although I'm sick enough we had to cancel my eye surgery, so prolly not a good candidate for surgery right now), BUT honestly this is the 1 SURGERY that freaks me out!!! That port is in my chest, the channel of catheter runs up into my neck through a large artery. I just think cutting open a large artery in my neck sounds horrifying. Can't even deal. For the first time ever I feel like I almost had an actual panic attack over something medical. I woke up and started balling my eyes out. Andrew hugged me and calmed me down. But, I decided to blog to get it all off my mind.
But seriously, I'm saying every single prayer right now. Just hoping that in the morning this port works.
I went into the bathroom and looked at it in the mirror. It's not swollen or red. I'm hoping just the vest shook me a little too hard and it caused the needle to back out off the port wall a bit. I pushed down on it a tad.
I'm honestly hoping that did the trick and they can leave this needle in. I really can't handle that right now. I'm stressing over my job too. My license renewal is at the end of this Month. I am signed up for the renewal course next week, I called the person in charge of it at my company, but waiting for them to call me back. So it's just bad and stressful timing for everything!
Anyway, let's all hope tomorrow morning my port works again, I hear back from work about the classes, and all goes smoothly after. Well, that's all for now. Going to try and fall back asleep now!
Oh and Thank you for all the Birthday Love. Andrew being off work and spending a whole day with him, going for a nice lunch, and visiting my parents... a girl couldn't really ask for much more
*stay updated with my hospital stay on facebook and twitter.
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