I've been meaning to write my "story" about getting sick and all that went down at the beginning of the month but I have just been lazy. No, that's not entirely true, I have been on oxygen and IVs and doing ALL THE TREATMENTS and just pretty worn out at the end of the day with not much incentive to write.
So...I have to go back to the end of March to really begin. Maybe all the way back to November. In November I had this crazy pain in my right lung. It was almost intolerable though I did tolerate it for about 10 days because I knew I had a clinic visit coming up and I try not to do ANYTHING remotely CF related outside of my clinic because, for you non-CFers out there - the medical profession at large really knows very very little about CF and you wind up in a big cluster fuck of nonsense of you try to get anything accomplished without your CF team on board.
Anyway, I had an x-ray which demonstrated a right middle lobe atelectasis (basically it's like a collapsed lobe) and I had my first bronchoscopy. I think this was in November...maybe it was in January? I was definitely in the hospital in November and January (and March and April/May), though my timing might be off here. Either way, I ended up admitted again in January for the SAME infection.
My normal routine is to go into the hospital where I am desensitized to the antibiotics I need because I am allergic to them and then I finish up the course of abx at home. During my Jan admission I desatted during my sleep and required supplemental oxygen - which isn't weird for a sick CFer, but I didn't know it was going to be a thing.
Then it was March and I was sick, again. Once again, I put things off until I had my clinic appointment. I had my usual pulmonary function test and my FEV1 was 35%!! My baseline is about 55% so that's a significant dip. My doc ordered a CT, another bronch, and an admission for more IVs. The thing was, I had plans to go to CA the beginning of April that I wasn't willing to put off. Quality over quantity I rationalized. I did have the CT before I left.
CA wasn't that fun, simply because I felt like SHIT. I was so damn tired the entire time. I was almost relieved to be going to the hospital and I actually stayed for 4 days instead of my usual 24 hours. It was at this time that my need for continuous O2 was discovered. My oxygen sats actually went down to 77% at one point before I was put on 3L of O2. I was not taken off the O2 upon being released from the hospital and was told the only way I was going home was to go home with oxygen.
Wearing O2 and carrying a tank with you everywhere you go SUCKS. And it's pretty hard to convince your family that your OK when you have an oxygen cannula stuck to your face. So once I was realeased, I found myself resisting going places more and more. Which was OK because I really wasn't feeling well still. at.all.
My doc put me on an IV med called Meropenem, an inhaled med called Cayston, and an oral antibiotic called Zyvox. Zyvox is a nasty drug. It gave me terrible lethargy and the worst diarrhea of my life. I chalked feeling so poorly up to that medicine. As well, I found that if I wore the O2 at home and in the car, I really didn't feel THAT BAD if I took it off to run into the grocery store or the kids' schools. haha. little did I know.
So on Thursday, April 25th (I think), Miss M had a "Muffins for Moms" event at her school. I was there for about an hour and I left the O2 in the car.
I am going to back up a tiny bit to complain for a minute. My family were kind of dicks to me during this time. I asked for help a few times and mentioned more than once that I just wasn't feeling well and I was told to "step it up" and "quit complaining" by two of my family members. In their defense, I have spent the last 35 years pretending everything is fine, even when it hasn't been, so they really didn't know. But I mention that because 1) it comes into play about how I feel regarding fam later and 2) I was pushing myself really hard to feel that I accomplished something during the daytime rather than having to face everyone and say NO, I didn't do the laundry, NO I didn't make dinner, NO I haven't swept the floors. Retrospectively, who gives a fuck, right? But I felt guilty about doing nothing all day.
So, anyway, after "Muffins for Moms" I went home, stuck on the O2 and proceeded to watch a bunch of "Arrested Development" episodes. About 1 that afternoon a friend stopped by. This friend was a boy but not a romantic boy. Still, when the doorbell rang my vanity kicked in, and I locked up the dog, hung the O2 cannula on the doorknob and answered the door.
My friend knew I was on O2 and even said that he could see the indentations from the cannula and asked why I took it off. I shrugged and said, "No big deal, you will only be here for a few minutes anyway." We both noted how out of breath I was. I could not seem to catch my breath and I lamented how weird that was, as I had been wearing the oxygen all day and had only gotten up to answer the door.
I decided I needed the O2 after all and went into the other room to get the cannula. By the time I sat back down my dexterity seemed to be impeded and I could not get the cannula over my ears. Then I noticed my friend seemed to be going in slow motion. I said something was wrong. Then I started to pass out. It was like I was the drunkest I have ever been. I could not keep my head up or eyes open and I was trying to hold the O2 to my nose because I still could not get it on. I told him he needed to call for help. I could hear and think just fine, but I could not react. It was like I was a little bit asleep and could not control my body. When we heard the ambulance, my friend tucked me into my table so that I would not fall and went to open the door. The problem was he caught my accessed port between me and the table and it hurt, so I tried to push away and ended up falling out of the table and onto the floor which is where the paramedics found me.
They gave me some oxygen via a c-pap (I think) and an Albuteral breathing treatment. After those two things I was alert and actually felt for a bit that I need not even bother with the hospital (ha! that is SOO me!) Nevertheless, I was taken to the ER. When I got there, luckily, the BEST RT was called and being familiar with CF, she had everything in motion: I received another breathing treatment, she called my CF doc (who heads the ICU at the hospital), I had an arterial blood gas drawn and was told fairly quickly that my CO2 levels were quite high (62.5) and so I got to wear the bi-pap Darth Vader mask from hell. This ended up causing a lot of my problems. So anyway.
Now my mom and dad and husband and kids had made it to the hospital. My parents were very worried, and while I understand why, they caused me a great deal of anxiety with how they reacted to the situation and new boundries MUST be drawn before anything like this ever happens again. I am a bit irritated still about how the situation was handled in the beginning. I want to reiterate that I have a HUGE loving and supportive family, but it was spearheaded by two people who have had very little interaction with my disease over the years, and thus were a little bit misinformed, and were too blinded by their own worry to think rationally. I don't blame them for this, but I'm lying if I don't admit to some resentment about how they acted when I needed them to be calm and cool.
Ok. so I was admitted to the ICU on the bi-pap and I was miserable. My RT wanted my bi-pap settings very high in order to eliminate some of the CO2 in my system but this was extremely uncomfortable for me. If you don't breathe with the bi-pap it feels like you cannot breathe at all. Occasionally I felt that the machine was making me hyperventilate and then my family was trying to come in and talk to me - which at times was fine, but occasionally I got so irate with them that I would start to panic. I'm also clausterphobic and the bi-pap mask was giving me a great deal of anxiety.
My mom called my entire family. I mean ENTIRE. My brother flew in from California, that's what I mean. And my step-mom called the minister from her and my dad's church. Can you imagine seeing this from my point of view? What exactly were they doing? What were the thinking? DId they know something I did not know? I was angry that they were all coming to say goodbye. No matter what they say ("we were just there to support you" - um no. Because if you wanted to support me you would not have made me a circus freak that you all stared at from the hallway), they were there in case I died. That was fucked up and it makes me mad. These words might be enough to make my family very upset with me, but the fact of the matter is my doctor never said anything remotely like, "She has 24 hours to live." It was all reactionary. and it did not calm me in any way. So, sorry guys. I love you, but next time, please wait for the death proclamation before rushing to my bedside in droves. Yes, I am a bitch. Sorry. I don't think my family reads my blog, so maybe they will remain oblivious to this? If not, all I'm saying is PLEASE LISTEN TO HOW I FEEL. Thank you.
So at this point everything gets hazy. I know that my abdomen became painful and distended and some of that was the bi-pap forcing so much air into me. I was miserable. I know I was given a shot of morphine at some point in the night with the hopes it would make me sleep. and I know my nurse that first night and I did not get along very well. I give her credit that she probably did all for me that she was allowed to do, but she just could not do enough to fix my misery and I was super annoyed with her. She did express her irritation with me unkindly though and I won't forget that trauma.
My sense of time is skewed, but at some point Friday afternoon I requested to be vented. I could not take the pain and anxiety any longer and I wanted to be sedated and oblivious. I think that this request came at the relief of much of the staff as I had initially been very against a vent. You know your sick and exhausted when things like a ventilator start to sound good.
The last thing I really remember was my doc saying, "So you want to be intubated?" and nurses pulling supplies out all over the place.
I'm told that I was then heavily sedated and put on the vent at 100% vent dependent. I remember nothing from that point until maybe Monday or Tuesday when they began turning down the vent and the sedative. then I was able to read some FB, write notes to people about what I wanted/needed, etc. Still, the notes that I was writing at that time, some are pretty funny and I have no idea what I was talking about.
Actually, I do remember on Sunday that my Infectious Disease doc changed my antibiotic...so I guess maybe I was a little bit aware. Anyway, by this time only my mom, dad, step-mom, and close friends were coming up to see me as well as my husband and the kids so though I sometimes found these visits exhausting, I wasn't irritated as I had been that first 24 hours. I do think and will probably always maintain that having visitors in the hospital sucks and your forced to give attention and energy to people who often don't give you a choice if you want to see them, they just show up. My friend Laura texted before she came, which was nice, and my kids wanted to see their mom, so I couldn't be upset about that, though they did tire me a bit. Still, I am lucky and loved and I have not lost sight of that. It would have been far worse to have no one come rather than to have too many people. My internet family really sustained me. The beauty of the internet is that you can deal with people when you want to, but there is no shortage of love and support either. I am so grateful for everyone who cared for me and prayed or sent intentions or whatever people do during these times. This was far harder, and will continue to be so, on my family than it was on me. Hell, I spent a good portion of the thing in propofol land with Michael Jackson.
My family, not completely understanding transplant, got it into their heads that TX is the logical next step. I'm pretty sure I am still too healthy for TX and I am certainly sure that I am NOT certain about TX. I KNOW I am not ready for TX yet, even if I was deemed worthy. No way. But I have been listening to a lot of TX and religious propaganda from my fam and it's hard not to be annoyed. I saw something I wrote on FB when my mom put a call out for prayers that I wrote that it "is their belief in the occult that is helping" and I know at one point I got mad at my dad and drew a 6 pointed star, lol, so feistiness never quite left the building and I haven't changed my ideas about any of that, no matter how much whispering they did in my sedated ears.
So, that's pretty much it. On Wednesday of the next week they significantly turned the vent down and on Thursday it was at only 5% and after my 150,000th ABG draw the tube was pulled (disgusting and horrifying) and then it was just a matter of hanging out. I was sent up to a regular floor Friday morning and was discharged Monday afternoon, 12 days after I went in.
I have been doing much much better. Today I went a few hours without O2 with no desatting and I have my follow up appointment next Thursday, the same day I start work on a new tattoo, a mermaid with the word "adapt" worked into the piece as an homage to life with CF and being a mom and wife and all these different hats I wear every day. I make them each work in whatever way I can.
