Drained

Dr. V has no explanation for the fluid return. He thinks it could be possible Dr. S perforated my bowel during surgery, and if that's the case I would need surgery to make repairs. Another surgery!? He orders a CT with barium to check for any "leaks" (his word). 

This is where I fall more deeply in love with Dr. H's office staff. When Dr. H orders a CT, it's scheduled at check out within minutes. When Dr. V orders a CT, I have to call and bark at his office staff to get it scheduled. After multiple calls, over several days, the CT with barium is scheduled for Friday. 

Later, as I'm drinking the blasted barium, I learned the scheduling delay was because the radiologist argued the procedure wouldn't show what Dr. V wanted so he changed it to a CT for better imagery. Yeah. You don't want to tell someone drinking barium the test may not work. Especially someone in my mental state...

Mindset:

What is a word for worse than miserable? My birthday is around the corner. I never make birthday plans, but this year I wanted to do something special. The last two months have been full of hospitals and doctors offices. I desperately needed time for myself. A moment to live. To forget C and celebrate another year lived. 

Now there is a possibility of an additional surgery, which would kill our vacation plans. A vacation that was planned a year ago, months before C re-entered our world. And who cares about me, Fred needs this vacation. He deserves a break from a being caregiver. Good grief. I know that stress. I know that heartbreak. And it kills me that I can't do anything make it better. He has given of himself so much, and I haven't been able to do anything in return. But I can make sure he has a fun & relaxing vacation. Please, sweet Jesus, let me give him this one thing!

The number of tears I have shed during this infection are innumerable. Its winning on so many levels and I hate it! I mean, loosing my hair and identity was a low point...but I still had a life. This is not a life. 

---

The Monday following the CT. We arrive at Dr. V's office for the regularly schedule supply pick. And wait...

"Oh, can you guys come back later today? Dr. V wants to meet with you and go over the CT results."

Dude. I'm pretty sure it's a miracle Fred didn't jump the woman. Sure lady. We don't have jobs like you. He explains to the woman that he has taken off work in order to be there, and now she's asking him to take more time. She looked at him as though he was speaking Mandarin. Consideration of others time, what is that?! And now I officially HATE this office.

We return. And wait all over again. Finally some good news. (Good news usually gets an exclamation point, but I'm so drained at this point my cheer is broken.) The fluid is clearing three more weeks of antibiotic, and if the drain is clear it can be pulled this week. He orders a CT for the week of Thanksgiving to check progress. And it's that fast. From scaring me with surgery to all is well. The C roller coaster is super fun guys!

Another Day, Another Drain

Three weeks pass. I'm feeling better, and am able to get out and drive myself for the first time since the liver surgery. Dr. V orders a CT to check the fluid has/is clear. The results are not good. The fluid has returned, and needs to be drained. An additional two weeks of IV antibiotics. 

Just as I start to feel better, this infection knocks me back down. And sure enough by the weekend I'm feeling the pain again. 

By this point I'm an old friend with all the nurses at the outpatient center, I walk in and one of the nurses sees me and gives me a hug. (50 points!) Today my nurse is Cletus (Janice...she has lots of names). 

Cletus was with me when the first drain was placed, so she knows how much pain I went through. And the same doctor for the procedure, so based on the previous pain he picks a different route for the catheter. No under boob this time! 

It is much easier going in blind not knowing the pain you're about to experience. Once you know, nerves and anxiety take over. Cletus held my hand the entire procedure, and anytime I started to squeeze her hand she pushed a little more sedative. Thankfully going through my back was much less painful than the under boob. Shocking, I know. 

The drain is left in place, and I get to go home with a bag wrapped around my leg. It's painful to move, but I can walk upright vs hunched over with the under boob drain. Small blessings. But the drain makes me miserable. I feel good, but it's too painful to get out and live, and I know once it's removed I can live again. 

I spend the next two weeks at home in bed only getting out for our weekly IV supply run. The drain is clear, but week two the abscess fluid returns. Before the drain was place, we had planned a get together with my dad's family. I was desperately hoping the drain would be pulled & I could enjoy that time pain free. But no, the infection wins again. 

Boob Rigged

So you'd think once a drain tube is removed the pain goes away, but this is not the case. The morning after being released from the hospital, I have an appointment with the Russian's office for IV training. Recall the drain tube site was basically my under boob. Right where underwire or elastic of a sports bra hits. You get where I'm going. I was going bra-less. To some no big deal. To others...

Pain. Walking hunched over with my right arm bent to support my boob. The Russian's staff looks at me like I'm a complete idiot. "Girrrrl! Why you walking like that? What's going on wich your boob?" I explain. "Well girl, we gotta rig that mess up. Can't have you walking around like that!" They grab a roll of gauze and get to work. When finished, I have a figure 8 wrapped from boob to neck. And it worked. 

Then they get to the business of teaching me the IV routine. The process itself isn't a problem, but the whole scheduling life around the IV schedule...not so fun. I get my first infusion in his office, and other than leaving a funky taste in my mouth that made me a little nauseous all goes well. 

We return home, and as scheduled I start the second infusion. Nausea is worse. By the time I complete the third infusion, I'm reaching for a barf bags. (By now Fred keeps them strategically placed around the house, I typically don't get much warning when nausea hits.) We call the 24-hour nurse line. She tells me to stop infusions until further notice. 

The next morning Dr. V's office calls. We need to go back to his office and pick up supplies, he wants me to switch back to the first antibiotic I received in the hospital. Recall he switched meds in the hospital, but I only got one infusion in because he forgot to put in the orders. So if he had done his job, we would have known antibiotic #2 makes me sick. Fantastic! 

This is a Thursday. I can't drive myself, and by this point Fred has taken off far too much work, so we make an appointment to pick up the new antibiotic/supplies Monday. We get to his office around 9AM, and wait. And wait. And wait some more. They finally call my name...

"Oh, I'm sorry antibiotic #1 is on back order you'll have to stick with what you have." 

Guys. We about lost it. First, Dr. V's office is not what I would consider a convenient drive. Second, they had since Thursday to figure out the back order situation AND call us. More importantly why did we have to sit for 45 minutes in the waiting room for nothing! They may have rigged my boob, but I'm otherwise thoroughly unimpressed with Dr. V's office. 

About Nurses

The nursing staff at Gwinnett Medical Duluth deserves some praise. While I was terribly miserable in the gerbil cage, they kept me laughing and entertained. I guess it comes with being young and not a complainer, but fairly often they would come into my room just to chat. So see terrible-awful Emory GenPop nursing staff, it's not me - it's YOU! 

It's here that, try as I may, I have accepted I'm never going to be able to connect with Asian nurses. The older the more difficult. Its cultural. You are their job. Filipino totally different. I recognize the accent. Talk about lumpia and throw out the only Tagalog word I know and I've got 'em! Yep, totally made it a game at this point. 

-10 points:  make the Asian nurse smile

-100 points:  make the Asian nurse laugh

-1 billion points:  Asian nurse gently removes a bandage

[Note:  Filipinos are Pacific Islanders not Asians, but I know...white people have difficulties distinguishing the two. If you're going to call them Asian, call them happy Asians. Watch Manny Pacquiao enter a boxing ring and you'll understand.]

It's here the nurses share hilarious stories about other patients. Like the guy that, not even kidding, asked the nurse for a back rub. I nearly laughed out the drain tube from that one. Or the man (not elderly, not paralyzed, no broken bone, or so much as a scratch on one arm) asked if the nurse was going to feed him his lunch. I was in such shock I couldn't even laugh. Either his wife does everything for him including wipe his butt, or the man is watching way too much porn!

It's here, that although I've heard it over and over, I start to accept that yes I am a positive person. And I can't quite understand why they tell me this. They always ask (because I'm young), I share my story (caregiver turned cancer patient), and they tell me I have a good attitude. Is it a feeling I project? Is it because I smile and make jokes? Or simply that I don't break down in tears? And in fact, on occasion, my story brings them to tears. Basically, show me the opposite so I can understand what a bad attitude looks like. 

It's here I get my first hug from a nurse because, while happy for me, she was sad to have me leave. And it's here I make it a challenge, 50 points per hug. 

Hospital for Days

Weekend hospitalists. Those in the know...KNOW! They don't understand your personal case, and they don't bother, so they give orders to take the most random junk meds that cause more harm than good. 

This time the hospitalist had a genius idea. I was anemic, so he ordered iron pills. Pills. Recall my visit with Dr. H, before all this started, was for an iron infusion. Well, I was stupid and took them knowing exactly what would happen. Stomach cramps, metal mouth, and because everything tastes like metal I loose my appetite. 

After three doses, I refuse to take anymore iron, but my appetite is already dead. And then the hospitalist freaks out because I'm not eating, so genius orders Ensure & sends in the hospital nutritionist. 

Ensure. Not sure if you've ever tried Ensure, I myself have only attempted the "juice" version. They should have named it Liquid Sand. It sucks all the moisture from your mouth and leaves behind a delicious gritty feeling. Lovely, right? Refused that asinine order without batting an eyelash. 

Oh, the poor nutritionist...

Before this tale you need to fully understand my mindset. I was admitted into the semi-ICU. At Gwinnett Medical Duluth, that means a room with windows for a door and a privacy curtain that no one fully closes when they exit. Basically an introvert's version of Hell. The drain tube made it terribly painful to move, so simply getting up and closing the curtain wasn't so simple (especially when attached to an IV pole). Hell I tell you. Visitors walking by looking into your room like you're a caged monkey. Pure Hell. Add in some nutty hospitalist's orders, and now the scene is fully set. 

I was not wearing my wig, so even if she hadn't reviewed my chart, it's pretty clear I've been on chemo. She asks why I'm not eating. Because everything tastes like metal. Because doc ordered iron pills that my personal doc wouldn't even think to prescribe. Oh boy, I gave her some attitude. She asks if I've lost weight recently. I'm not sure how I didn't bust out laughing, but I do turn and give Fred the "bitch lost her damn mind" look. (Sorry. That's what it's called. And you know that look because you have one yourself!) Eventually she leaves, probably thinking I'm pretty much the rudest person. Ever. Grace hit the escape button that day. 

Monday comes. Monday I'm told I'll get out Tuesday. Tuesday I'm told Wednesday. I'm getting frustrated. Stuck in a gerbil cage of a room with zero privacy loosing my mind. Tuesday night the social worker comes in and tells me Dr. H's office told her Friday. TEARS! Fred fills her in on why I'm crying. 

[We later find out the social worker flat out lied, and Dr. H's office never said Friday. In fact, she told them Friday because of paperwork she would need to file.]

Wednesday comes. Dr. H says it's up to the Russian (Dr. V, the infectious disease doctor). The Russian says I'm good to go, but wanted me to try a new antibiotic. One he wanted me to be using for several days, but never put in the order. 

My Aunt comes in for a visit, I get one IV bag in, the drain tube gets removed, and I'm out the door within maybe forty-five minutes. I'm scheduled to visit the Russian's office the next morning to pick up supplies, and learn the IV routine. 

Abscess Treatment Plan:  

IV antibiotic, 3 times/day, every 8 hours for four weeks. 

Meaning no chemo for at least six weeks. Meaning while I had everything perfectly scheduled, and my 12 rounds of chemo & reversal surgery would have been completed by year-end, that perfect schedule just blew up in my face. I wanted so desperately to start 2016 fresh. And more importantly, before our insurance deductible reset. So, after some tears, I edit my thought process:  I'll get my 12 rounds in & start 2016 chemo free!

The Infection

The day after liver surgery I had a blood clot and right lung collapse. No chest tube. They sent me to ICU, gave me high flow oxygen, and let it "reinflate" itself. This meant when I left the hospital, I still had fluid around the lung. 

Two weeks later I returned for a follow up MRI. The fluid was still there, but Dr. S's thought was it would clear itself naturally. And natural is always better than shoving a catheter into someone's back to drain and risk infection...hahaha. Ha. Infection. Funny story. 

Another two weeks pass, I'm cleared for chemo and knock out round #7. The following week the pain is worse. It's painful to breathe. I cannot hold my breath more than 10 seconds. Just getting to my doctor is a feat. Fatigue is one thing. I can push through the loss of breath...because I can breathe. When you're working with one and one third lung, walk 15 feet without stopping and you're a darn hero!

I had mentioned the pain was a little worse during my pre-chemo chat with Dr. H, but this appointment I complained more and was sent for a chest x-ray. I was also anemic, so while waiting for x-ray results the plan was to get some iron through IV. That didn't happen. The finding was an abscess, and I was immediately admitted to the hospital. 

And then the talking heads got together. Dr. H was generally uncomfortable making decisions about the abscess. (It's another doctors work, they know the area, what they did, blah, blah, blah.) So he calls Dr. S (liver surgeon), who explains only 10% of his patients need draining and he still thinks natural is best. And the infectious disease doctor (Dr. V, aka The Russian) says no temp, no infection. So while I'm still in pain, and after two days of waiting in the hospital, they decide to release me. If I run a temp, I go to the ER. 

Fun fact. It seems every time a doctor throws out a percentage, I am that stupid fun percentage. Hours after I get home I start running a low grade temp. And by that night we're minutes from going to the ER, and then the temp drops. I was taking Loratab with Tylenol and didn't realize it was causing the temp drop. The next morning another fever, so I call Dr. H's office and we're off to the ER. 

I'm admitted around 9:30 AM, and by 2:30 PM we finally get rolling and the abscess is finally drained. Up until this point I thought the abscess was in the lung area, but I find out it's actually located where the liver surgery was performed. Upper liver. Hard to get to..remembering the first biopsy. 

Thankfully they kept me pretty sedated for the drainage, but it was still painful. The catheter was inserted right under my boob, practically going through breast tissue. Yeah, pain! And then I see the syringe of fluid they are pulling. It's not fluid. It's blood tainted white gunk. Like "light chocolate milk" according to one of the nurses. And these are not small syringes that are being used. The doc instructs the nurse to admit me into ICU. 

Five gigantic syringes later, I'm moved to my side, and they start to drain the fluid in my lung. There was a problem with the catheter so they only remove 100cc, but it's all clear. Basically the abscess was causing the fluid build up in my lung, it was unrelated to the lung collapse, and would naturally clear now that it had been removed. 

The drain tube is left inside. It's about 2 feet of tubing that is shoved under my boob & ribs. This thing is painful. I learn as long as I don't move the pain isn't bad. Bathroom visits required a shot of morphine to manage to pain of moving. 

Dr. H stops by for a visit during his evening rounds. He's shocked that I was walking around with all that gunk, and not really complaining when I had every right to complain. "Oh, here's Heather with a football of abscess fluid...it kinda hurts here Dr. H." Before he leaves we ask when I'd be released, he said Monday. 

Liver Surgery

To be completely honest, my memory of this hospital stay is hit or miss. I went into surgery praying they would use my port, but then they "didn't have the right needle". Emory University Hospital. Didn't have the right needle!? The same hospital the CDC sent Ebola patients. Rrright!? We made a deal, as long as the IV could be switched to port after surgery. It took 9 pokes before they even found a vein. Then as each vein failed during surgery, they had to find another. I awoke from surgery with an IV line in my wrist, elbow, and neck. Ever had an IV in your neck? 

The most. 

UNCOMFORTABLE. 

IV placement. 

Ever!

[Not even going to mention the super fun part when they removed the neck IV and the adhesive from the tape pulled my skin off.]

They were nice enough to start my IV drip for pain early, so I awoke from surgery in much less pain than usual. (I'm usually in non-existent tears "screaming" barely a whisper 10...it's a TEN!) By that evening I was able to comfortably sit in a bed side chair, and the next day I was out walking working hard toward a quick recovery.

And then it happened...

In every caregiver story, there is a moment that occurs that scares you to death. It's the moment you truly realize you hold someone else's life/death decision making powers. This was Fred's moment. And most of this comes from Fred...

The second night I fell asleep around 8:00 pm. The nurse tech came in an started taking my vitals. She notes my O2 levels dropped dramatically to around 35%. Normally they don't want O2 to fall below 90%. My right lung had collapsed. Fred quickly went to get help. I was hooked up to high capacity oxygen and moved into the ICU, where I awoke to another barrage of needles. I counted 26 pokes. "We only poke twice." Per nurse! (I can only imagine the call for backup and a line of nurses, 26/2 = 13 nurses.) I was out of it, I completely forgot I had been through surgery, and kept asking them (terrified) if this would change my surgery date. 

By the time the ICU doctor started asking the basic questions I was still out of it. Typical who is President, where did you go to school, do you have pets/what are their names. Snuggles & Seven. No...Seven & Dexter (Snuggles had passed a good five years ago). I looked at Fred terrified and in tears. 

Fun story. This doctor is the sister of an old high school friend. The Laird sisters have unmistakable piercing blue eyes. I could recognize that, but not recall my pets names. I think asking if she was who I thought she was put her at ease medically. 

My stay in ICU continued with more tests until they finally found the collapse was caused by a clot in my right lung. Just earned myself six months on blood thinner meds. After three days in ICU, I was moved to a regular room with regular nurses. In prison terms, general population. And in hospital terms, I'm pretty sure the experience is the same. 

I was going to go into a bitter diatribe about my stay and care in "general population", but I prefer not to go there. If you're stuck at Emory, you want the specialty floor & nurses. In general, my stay at Emory taught me to fight. I will not be poked another 26 times in a row while someone searches for a vein and refuses to use my port. It taught me I know my body better than anyone else, and it's okay to refuse meds. I will not take ridiculous meds that I know do more harm than good. 

Of course, when you're drugged, the fight gets harder, and that's where always having someone present to help you fight becomes necessary...

At one point our AC went out at home, and Fred had to leave to get it repaired before I was released. Enter our dear friend J. A friend that had her own health issues she had been fighting through the last two years (TWO YEARS!), but she dropped everything to stay with me while he was away. And fight we did! When the doctors made their rounds the next morning, I told them I was leaving that day and didn't care if it was AMA. I couldn't put up with the nursing staff one more day. 

Usually I don't make such a ruckus, and later apologized to the doctor. I explained the nurse care was frustrating, and the doctor really didn't seem too surprised. The day I was released, the nurse was fighting with the doctor in front of me. I mean, I don't know hospital policy, but fairly certain that's a no-no. In the very least it's classless, but a testament to the care I received in GenPop.