one day at a time . . .

Posts tagged ‘meds’

18 Hours at the ZOO!

So my last post was about regaining control. Little did I know that 2 days later I’d be in an 18 hr ZOO!

A week ago today I ended up in the Columbia Presbyterian Emergency Room. I NEVER go to the ER. But, the night before I woke up at 3:30am with excruciating pain in my right lung. It hurt to breath, to speak, to anything! It was scary and frustrating since I had been feeling better after a week on IVs. My husband was nervous and wanted me to go to the hospital, but I refused to go at that hour. The thoughts of a NYC ER during the night didn’t sound like a place I wanted to be. I eventually fell back asleep and woke up for my morning IVs and the pain was just as bad.

I spoke to my CF dr, and since it was a weekend, she told me I needed to go to the ER for an x-ray to rule out a collapse or pneumonia. She said she would call the ER and let them know I was coming and she would meet me there later.

So we finally got there around 10am. The waiting room was busy, but not crazy. I didn’t wait too long to be seen by the nurse. Then I was brought into the actual ER. HOLY CRAP! People everywhere… even in the hallways and walkways… I guess I should have been happy that my gurney was in a “proper” spot with a curtain on each side. The space was slim, my hubby had to sit at the foot as there was no room on either side of me!

They took blood and by 12:00 finally had my x-ray. I notified my doctor, she called radiology and called me back. They told her there was no collapse, but there was a pocket of pneumonia on my right side. I assumed that’s where the pain was coming from. She also mentioned that I had a lot of mucus plugging, which could also cause the pain. So by 2:30 my dr told me she was consulting with infectious disease to determine what to do with my IVs; either add or change meds. She said once they decide, then I’ll get a dose in the ER and can then go home.

By 3:30 some bloodwork came back and my liver enzymes levels were off the roof! What should be 20 was at 700. It was determined I took too much tylenol and fioricet in a 24 hr period. I basically OD’d on them and now toxicology got involved. I was taking tylenol instead of motrin because I can’t take motrin before my sinus surgery (that I was to have on the 23rd). Fioricet and tylenol both have acetaminophen. So I was then told I HAD to be admitted until the liver enzymes come down. I also had to have an antidote administered, which is a 20 hour IV of mucomyst!

By 6:30 the IV antidote was started. One hour into it I began feeling very hot in my face and very itchy all over my head. Well, apparently 1% of people have anaphylactic allergic reaction, and I’m one of the lucky ones. So it was disconnected and they gave me benadryl through my IV. The toxicologist told me I now needed to take the oral version every 4 hours. Apparently no one has a reaction to the oral version. I asked why wasn’t I given that to begin with, and she said because it’s awful tasting. WHAT?? BTW, it smelled horrible, but tasted like water to me… I was given my first oral dose at midnight.

All this time, knowing I needed to be admitted, also knowing there was a 2 day wait for a bed, and since I need a private room, it makes the finding of a room more challenging. There is a priority for CF patients, however, not fast enough for me.

Let me break here to fill you all in on the craziness of this ER. Try to nap? Pshhhhh… The gurneys are so close to each other you hear everything. Not to mention the constant need for a Spanish translator. I lost count as to how many times I heard on the loudspeaker “translator to area c” – and of course I was in area c. Then there was the patient next to me that was apparently mugged by 7 guys in the subway and when he was asked his name he insisted he had no last name! This ER was filled with people and no way enough doctors and nurses. It’s a ridiculous situation. I don’t know how they do it!

I had my blood redrawn at midnight to check the liver levels. I also had a sonogram of my liver at 11pm and a chest CT at 1am. By 11:30, I was finally given my next 2 doses of IV antibiotics. I missed the midday doses because they wanted my liver to have a break, but when my CF dr realized they decided that, she was pissed and told them I absolutely needed the meds, my lungs took priority. But, it took forever to get the meds! The sonogram was normal, the cat scan confirmed lots of plugging, lots of mucus,  and no clots. My breathing got progressively worse through the day since I had no PT and no IVs.

Let me take another break to discuss my IVs and blood draws. I have a PICC line in, but the ER policy is to not use it so as not to risk infecting it. They had to insert a peripheral IV. Now I’ve had 100s of these. I usually do my IVs with them. This is my first PICC. I have awesome veins. The damn nurse insists on placing the IV on my hand. She said the veins in my arm were small – HUH??? Fine… When they disconnected the antidote to insert morphine for pain, it burned. I told her and she said it was the medication and she put it in slowly. Then, when they disconnected the anticdote to administer the benadryl, it burned again. I knew it wasn’t right. When the night nurse came to give me my IV meds I told him the IV line is not right and I didn’t want the meds put in through that IV line. He agreed to use my PICC. Then, when I went later for my cat scan with contrast, I told the lady not to use the line in my hand. I asked her to insert another IV. She did in 2 seconds on my arm – beautiful! I later ripped out the line from my hand. So annoying! Shouldn’t ER nurses be good at inserting IV lines?! Oh, and the nurse that came for my 2nd blood draw – OMG – my veins are bulging out! She decides to use the top of my left hand. WHAT? Well, it didn’t last. I told her where to go and WOW – she got all the blood she wanted. WAS THIS FOR REAL???

By 3am, I simply could no longer take this ZOO! I told the nurse I will no longer wait for a bed, to get me my next dose of the oral antidote, then I’m leaving. They contacted my dr, she checked my liver levels, they came down to 500. She told the nurse it was ok for me to leave. I got my dose at 4:00. left, got home at 5, and fell asleep in about 2 seconds flat!

18 hours of craziness! People thinking they were sick… not having last names… needing translators… overworked staff… patients everywhere! I swear I will never go to the ER again!

When I spoke to my doc in the morning, she decided to keep me on the 2 IVs I was on and added a 3rd. As the day went on and I got my meds and PT my breathing began to improve.

I was still not allowed to take tylenol of fioricets for my headaches. It was torture. We reran bloods Monday, the number came down to 200. Still high, but she said by Wednesday I can take 2 fioricets, twice, and only if I really need it. Wednesday didn’t come fast enough. I popped those pills first thing!

I ended up rescheduling my sinus procedure for the 30th.

I’m now getting better every day.

IVs… PFT Rollercoaster…

Hello!

I went to the dr today, my 37th day of IVs. I was sure I would have great PFTs – like 47% or 48%. The past 2 days I finally felt better – not winded anymore and not junky.

So, I blew a 44% – but the blowing sound was awesome – no junky or wheezie sounds – just clear air! So why only a 44% – I don’t know – but what matters to me right now is that I FEEL better. The PFT roller coaster can be very frustrating, especially when it doesn’t go in the direction I’d like it to.

Dr said my right upper lobe was FINALLY clear.

The decision is to infuse my last 2 bottles of IVs, which I am doing right now – then I can pull the peripheral out!

WHOOOOPIEEEEEEEEEEE ! ! !

I am down to 7.5 mgs or prednisone and will keep it there for about a week then touch base with my dr again and hopefully drop to 5mgs.

I had  my last xolair injection today. Not sure if I’ve mentioned this before. She tried it as a long shot – but after 6 doses, it didn’t really seem to do anything.

So for now – I will enjoy my IV freedom and hope for 3-6 more months of this freedom!

IVs………

Looks like switching one of the IV meds made a difference. I’m not winded. But, I’m still junky. My PT told me my upper right sounds much better so that’s great news.

Anyway, since I’m still junky and I won’t see the dr until Thursday, instead of ending the IVs at the 5 week mark tomorrow, they are being extended until Thursday. Hopefully by then all will be well and she clear me from these IVs

I cannot believe how long I’ve been on them! This is a first! I hope I’ll be free for a good 3 months after this – 6 months would be awesome! A little part of me wonders if getting off the IVs might just result in everything starting again… Hoping it’s just paranoia.

I AM still on the prednisone. Only 7.5mgs. Not sure what we’re gonna do with that yet.

One step at a time ♥

IVs – 4 weeks in…

After a discussion with my dr, since my upper right still seems to be congested and I’m still short of breath, we’re going to extend the IVs to 5 weeks, but change the craftazidime to merrim.

I’m REALLY hoping the med change makes the difference I need…

I NEED a break! It’s been 18 months of annoyances….

But if it works – Bring it on!

Flagyl

OK… so today I started a new antibiotic, called Flagyl. It’s an antibiotic effective against anaerobic bacteria. Anaerobic bacteria are single-celled, living organisms that thrive in environments in which there is little oxygen.

It’s just something my doctor thought to give a try. Apparently, in CF, these bacteria, because they are buried so deep in the lungs, cannot be found. So, if you have them, they don’t know. So, since I’ve been having so much trouble for 18 months and not much success – it was worth a shot.

I am SO hoping this helps.!

4/8 – well, don’t know if this would have helped, had to stop it once I started my IVs. Maybe we’ll try it in the future…