one day at a time . . .

Posts tagged ‘IV’

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.

Regaining Control…

So my attitude is better now than it was a few weeks ago. After hitting a low on my PFTs at 33%, it went up to 37% a week later, then 40% a week after that. However, I didn’t feel my oral antiobiotics were doing what it needed to, and once my dr saw the color and thickness of my mucus, she ordered IVs.

Ok, so 101 days of IV in 2010, and here we are in March of ’11 and I’m back on IV. I started them a week ago, and I’m already feeling improvement! I got on my elliptical for the first time in a LONG time yesterday and got through 15 minutes – that’s great!

The other thing I did was get my very first PICC line. Yes, 43 yrs old, and this is my first time. I love my PICC – what was I thinking doing peripherals, and having them changed every 5 days! The only annoyance is the wrapping for the shower. I found this product and think it’s awesome. To the CFers reading this that use PICCs, you might be interested: I ordered it through since there was a 20% coupon 🙂

This is my PICC:

Also went to the ENT at Columbia Presbyterian for an opinion on my sinuses, then went to a top notch guy at the NY Eye and Ear this past Monday. They both recommended the surgery. That was no surprise to me… I’ve been told that several times, but my CF dr never recommended it because my sinuses hadn’t seemed to be contributing to my infections. But after the past 2 yrs of craziness, it was worth a look in to.

Went for my 2nd opinion to a dr at the NY Eye and Ear, and he is able to perform the surgery under conscious sedation! And has experience with CF patients. So no worries about any difficulty that may arise from weaning off the breathing tube from general anesthesia. He will be correcting my deviated septum, amd “cleaning out my plumbing”. When reviewing my cat scan, it shows a lot of disease/inflammation. I even have bone that wore away! So my anatomy is not classic. He will perform the surgery with guided radiology. There’s also a section where my brain comes down further than expected – so the guided help is needed in order to map everything correctly. I expressed concerns about so many CFers having multiple sinus surgeries. He explained how many surgeons correct portions of the sinuses, leaving it vulnerable for future problems. He will be improving the drainage of all 8 sinus cavities and hopefully this will improve my drainage and hopefully decrease infections related to  my sinuses.

I realize there is NO guarantee. But, at this point, I am willing to try anything that can possibly decrease my IV occurrences, even if only by a small percentage. The way I see it, I’ll be awake, it’ll be about one hour to do, and it’s not a drastic step. Scheduled my procedure for the 23rd. I’m very anxious! I will still be on IVs and that’s how my CF dr wanted it.

So, after feeling like I was losing control,

I now feel like I’m picking things back up.

The roller coaster joys of CF 🙂

Losing Control…

It’s been a while since my last post. Been trying to get things back to normal after 101 days on IVs for 2010. Also attempted to wean off the prednisone since October of 2008…

Well this past Saturday was 2 weeks off the prednisone and I was going through pretty bad withdrawals. Very achy and it only got worse by end of day, feverish at times, and slight breathing decline. Then Sunday, started with a cold. Off to the dr Monday, and my breathing got real bad, and I blew a 33% PFT! 33%!! Haven’t seen that in 20 years!

So, back to the drawing board. Started oral antibiotics, and only 10mgs of prednisone. Had a long talk with my dr. Took bloodwork, key number to check is the IgE. I suspect it’s elevated again, which of course is treated with — prednisone. We plan to stay the course until Friday, and if not better, re-start IVs. Well my IgE did come back in fact elevated – but she chose not to up the prednisone until we retest it on Friday. We also discussed my sinuses. About 20 yrs ago, the ENT suggested surgery, but once I got my firm CF diagnosis it was determined it was not necessary. Then, back in 2008, when I had my 3 month migraine and saw an ENT, and had a sinus CT scan, he found chronic sinusitis and a deviated septum. He recommended surgery to clear out my sinuses as well as correct the septum. My CF dr decided against the surgery since my sinuses have not been causing me any problems. Now, she wants to repeat the sinus CT scan, have me visit the ENT again, and evaluate any progression. She’s not pushing the surgery, but wants to cover all bases now that I’ve had 2 bad years. She also suggested, as a precautionary measure, to get back with the transplant team over the next few months… “just in case”… I hate going there…

Deep down, I am so scared. On the outside, I am smiling, and believe I can fight through this like I always do. Just typing that brought tears to my eyes. No one really knows what the future holds for me besides God. I fear for how all this will effect my son. Takes me back to the day he was born and I realized that my CF may one day hurt him so deeply. I can’t do this to him. He needs me. He’s only 15, almost 16 and so anxious to get started driving. More fears for me.

Please, I need to find the strength. I have the best family support system anyone can ask for. My fight is just getting harder. Tears are still rolling down my face. Then, there’s the prospect of transplant. After befriending quite a few transplantees, that really scares me. I cannot believe the myriad of problems that exist. Every one different than the other. I just don’t want to go there. Sorry to you transplantees that are reading this, it’s just how I feel.

I realize, in order to be ready for transplant you have to be very sick, and it will be another chance at  more time. I just can’t get out of my head that once transplanted, my days are numbered by ridiculous statistics out there.

It’s so hard. It’s so scary. I’m a control freak. I feel like I’m loosing it. It doesn’t feel good.

Please God, help me to heal… help me to get back to a manageable baseline… help me to be there for my son…

I apologize to anyone reading this for the negativity… I just really need to get this off my chest and cannot burden those close to me with this. It’s therapeutic to get it out and write it down.

Off to the dr on Friday, and we’ll see where my CF Journey will take me.

Best wishes to all you CFers out there…

My Latest IV Experience

This coming Monday will make 3 weeks on my IVs. Not sure when I will be done.  This was a scary IV experience. I haven’t been this sick since 1999. My oxygen went below 90, my breathing was horrible, my mucus production more than ever. I ended up on triple IV antibiotics, and IV prednisone before I started to feel any relief.  High blood sugars were also added to the mix. My dr wanted me in the hospital, but I insisted on staying home.

Scary. While going through this all I could think of was, is this ever going to turn around; will my doctor start the transplant discussion again; will my breathing ever get better; will I have to stay on o2 long term…..

Now things finally turned around 🙂   …. no transplant discussion…  breathing improving … no more o2 needed … what a relief. And my sugars returned back to normal!

My concern now is will my fev1% ever return to baseline. It hasn’t over the past year. I’ve been on prednisone since October 2008, unable to wean off. Through this my fev1% has declined.

Please Please Please let me get back to at least 45%… My last fev1% prior to being sick was only 37% 😦

2011 BETTER be a better year. I’m sick of IVs – four times this year alone – ugh!

IVs… PFT Rollercoaster…


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!


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!


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 ♥

Lists – IVs

One of the blogs I follow – Cystic Gal (the link is on my blogroll), posts lists here and there, and I find them fun to read. So I thought I’d give it a try. Here goes…

    Top 5 Annoyances of being on IVs:

    5. The feeling of metal mouth and nothing tasting right.

    4. Having to have the nurse come every every 5 days to change my IV site.

    3. Before I can get in the shower, having to cut the fingers off of a rubber glove, pull it up over my IV site, and taping it up.

    2. The schedule! EVERY morning for 1.5 hrs, EVERY afternoon for 2.5-3 hours, and EVERY night for 1.5 hrs (the times are longer now that I switched antibiotics – yikes!)

    1. Being tired all the time!

On the FLIP side…

    Top 5 Perks of being on IVs:

    5. Able to catch up on cyberspace.

    4. Able to get lots of rest.

    3. My hubby helps around the house.

    2. and 1. My lungs are getting cleared out!