Sunday, October 9, 2011

The Emotional Part

We can all agree that a benign pathology report is a good, it's a great thing. And, defying the odds, when the odds are bad, is pretty remarkable too, but something happens to you when you come that close to death. I'm not sure it's something anyone can understand until they've experienced it. I know I didn't and it seems to be something that people don't talk about even when they do. When I started writing this story, I promised myself I would be 100% matter the light it may paint me in to some people. The fact is I've wasted months suppressing my feelings... real, God given feelings, because of fear of being judged by that small group. I can't do it anymore. People, especially Christians, who experience these feelings need to be real.

In April 2004, I experienced aspiration pneumonia for the first time post-hysterectomy. At that time, I was given a 20% chance at survival. I had an almost 4 year old and almost 3 year old at home. I was so sick, and on top of that, reeling from having a hysterectomy at 24. I laid in my hospital bed, unable to speak, and prayed over and over for God to just take me. I couldn't do it. I was not strong enough and both the physical and emotional were just too much. Somehow, only God knows, I pulled through. I was left with deep emotional wounds. It took about a year for me to want to live again. I cried all the time. No one around me understood, and to be fair, I didn't really try to explain. I really didn't understand myself. At the time I told Brandon that I never wanted to survive something like that again. That if it ever came to it, let me go.

Every subsequent surgery, I was absolutely terrified of aspiration pneumonia. I always meet with the anesthesia team before and let them know that I have experienced this complication. Every time, they laugh and tell me there is no way it would happen again. After all, the odds of it happening the first time were so slim and we all know lightning doesn't strike the same place twice. But, to make me feel better, they'll take extra precautions, like antacids and anti-nausea medications to prevent me from throwing up post-op, having me not eat the day before surgery, and not removing the breathing tube until I am waking up. These things worked well for 5 surgeries since 2004. After all, they were only for peace of mind.

So, when the emergency doctors let me know that they were looking for either aspiration pneumonia or a pulmonary embolism that Friday morning, my thoughts were "Yeah right! It's not possible for me to have aspiration pneumonia and no way I have a pulmonary embolism!" Well, we all know now how that turned out. When the news was in, I was in shock. This just could not be happening to me. Not only was my chest open, but now this? It's redundant, but seriously, it just couldn't be happening.

This time the physical was worse, but physical pain is physical pain and I didn't wish to die like I did then. The emotional side of the ordeal has been completely different though. Now, I haven't gotten to the whole story yet and haven't even touched on what I'm dealing with today, but I said I'd be real, so here it is...I'm angry. I'm pretty sad too, but mostly, I'm just angry. It's not fair that I've had to deal with all of this. If God loves me, why does He allow me to shoulder it all? I have dealt with far more than my share and it's time I had a break! These are all thoughts I've had. Of course, the logical side of me knows those thoughts are junk. Who determines what fair is? If God's Son suffered so, why should I be immune? But logic doesn't have much to do with emotions in this case. I've had a hard time opening my devotional or my Bible. I can barely listen to Christian music (something I solely did before). I call out to God but it's difficult to pray. I can't drive by the hospital where this all went down. I've been to church one time (we never missed church) and I can't do it again. I'm only 4 months out and I know that these things are all part of the process and I will get there, but it's so hard. I don't want to feel this way. I know what the correct reaction is and I know this is not it. It's hard for me to hear people say that I'm strong or they admire me. I know me and I know that deep down, I'm ticked. It really is not admirable.

So, if you are one of the people cheering me on...THANK YOU! Know that I appreciate it and I need it, but also know that I do not have it all together. And, something you'll probably hear me say a lot, I am most definitely a work in progress.

Thursday, October 6, 2011

Part 2

After writing part 1 and rereading the events up until that point, something unexpected happened for me. I so clearly began to see God's hand in each tiny, seemingly insignificant step. From the nurses being unable to start an IV causing me to need a central line to Kelly staying the night with me that Thursday to give Brandon and my mom a break...all of it was Him preparing and protecting me. Talk about therapeutic!

Friday morning, May 20, the news came in that I was suffering from aspiration pneumonia and a pulmonary embolism. I was taken directly from CT back to the ICU. My mom and Brandon, who Kelly had called and told to get up to the hospital, were there waiting for me. The doctor on staff came in to let us know the diagnosis. At this point, they were unsure if there were any other clots waiting to make their move. This rendered me to complete bed rest, unable to move at all, until we knew. It also left open the possibility of being taken back to the operating room to have a vena cava filter put in to catch clots. That meant no food or drink while we waited. To say I was miserable, would be a huge understatement.

On top of those conditions, my breathing had gone way south. I was struggling. There is no worse feeling that being unable to breathe, literally drowning slowly. Apparently, I also looked pretty bad. All the color had drained from my face and was replaced with an eerie gray tint. It was decided that the oxygen mask I was wearing was not going to be sufficient. So, I went on something called bi-pap. Bi-pap is a machine that does the breathing for you. It fits really tight onto your face, covering your mouth and nose. Air is forcefully pushed into your lungs and then drawn out, effectively inhaling and exhaling for you. As they were hooking me up, the nurse told me to try to relax and not fight it. She said most patients hate it and struggle against the machine the whole time. Once I was connected, it became clear that what I knew of the difficulty I was having and what they knew were miles apart. From the moment that machine was turned on, I was in heaven! Instantly, the relief was overwhelming and all those patients that don't like it, well, they must not have felt the way I did before. My dear friend, Lise, came to visit shortly after Brandon sent out the text saying I had made a turn for the worse. She stood next to my bedside and gently stroked my head while humming hymns. I couldn't speak on the machine and was just too weak to communicate anyway, but this moment still comforts me when I'm upset. It was amazing.

Eventually, a doppler study was done of my legs and revealed no other clots. I was allowed to move (to the bathroom and back) and eat and drink again. Antibiotics, via my central line, and injections of Heparin in my stomach were started to battle the pneumonia and make the embolism "sticky". I remained on bi-pap for about a day and then weaned back to an oxygen mask. At first, I wore oxygen even to the bathroom. It was impossible to breathe without it and I was not willing to try. There were breathing treatments every couple of hours, around the clock antibiotics, chest x-rays (done in my bed) twice a day, Heparin shots, blood draws (thankfully taken from my central line), and several doctors in and out of my little corner of ICU. Not much changed for the first four days or so, other than the addition of Coumadin to my meds and a very slow weaning of my oxygen intake. During this time, I was unable to see my children at all. They were not allowed in the ICU and that was so difficult on all of us. I also began having horrific panic attacks any time I was left alone. No one was allowed to stay the night with me and it seemed like as soon as visiting hours were over, my mind would rush to a place of fear...the horror of not being able to breathe and being alone. I literally passed out from panicking one night when I had gone to the restroom. I decided from that point on, whenever I felt scared of not being able to breathe, I would say, over and over, "Jesus is the breath of life." This worked :)

By the following Thursday night, one week after heading to ICU for the second time, I was ready to move back to a regular room. This was a huge milestone, not only for my prognosis, but I got to see my kids the next day! Sweet Abram was so scared of me in that condition and all Blaine could do was hug me and tell me how much he missed me. It broke my heart.

INR is the measurement used to indicate the rate of time it takes your blood to clot. They wanted mine to be between 2.0 and 3.0 in order for me to be considered stable and able to go home. Finally, on Sunday, May 29, I was within range and discharged. I left that day on Coumadin for what was to initially be six months. I left that day with a 7 inch incision straight down my chest. I left that day with a stomach covered in bruises from Heparin injections. I left that day with a hole beneath my right collarbone from where my central line had been. I left that day with stitches in my lower abdomen from a pulled chest drain. I left that day emotionally and physically drained from such a long, horrific ordeal. I left that day and returned to my husband, my children, and my home knowing God had once again saved me from what the world thought would do me in. I left that day with no tumor in my chest and a benign pathology report.

Tuesday, October 4, 2011

From May 17 to Present...Part 1

I had every intention of coming back here and updating as my recovery progressed. It obviously didn't happen. Things didn't go at all as planned and I have honestly been too emotional to relive it all. It was just too hard to think of going back there. I am finally feeling like it's time: time to look back and find a way to rejoice in how far God has brought me. I know He can use it to help others and while my memory is still clear, I want it in black and white for me to look back on and for my children. So, from the beginning, the morning of May 17, 2011...

We arrived at the hospital on time and were immediately taken back for preparations. They let me know that I was not going to get the privilege of a traditional IV. Nope, the surgeon had requested a "crowbar", as the nurses called it, just in case there were complications. A nurse from the ER was asked to come in and start it because none of the pre-op nurses had ever started one so large. The ER nurse had only done it once, on a severe abdominal trauma. Now, I have been through more than my fair share of IV starts, but this was unreal. I began to sweat and feel faint. Apparently, all the color drained from my face. They flipped me upside down and hooked me up to some cold air. Nope, not going to get this IV started. They decided to put a normal one in and start a central line on me once I was asleep. A central line is a catheter that goes directly into a major blood vessel. It can serve as an IV for the receiving of medicines, blood, and fluids, or it can be used to draw blood from. Mine was inserted just below my collarbone on my right side. I'd only seen these on TV and was not thrilled with the thought, but given the events to come, it turned out to be a Godsend. I was taken into an area where an anesthesiologist implanted an arterial line after the initial IV was in. This was a line put into an artery in my wrist to measure my blood pressure internally. I was then given a moment to say goodbye to Brandon and my mom and then on to the operating room.

There were tons of medical professionals in the room. Thymectomy is a pretty rare surgery and they were all pretty excited to get to see one. Mercifully, I was put to sleep pretty quickly. Surgery lasted only a couple of hours. The doctor updated Brandon, Brandon's dad, and my mom in the family waiting area. He had guesstimated from the CT scan and PET scan that the tumor was about the size of two fingertips. He said he was really questioning doing the surgery out of concern that he'd even be able to find the tumor without much digging. Well, as soon as my sternum was open, it popped up. In a matter of 3 weeks, the tumor had grown to the size of my fist and putting pressure on major blood vessels. He said he was immediately sure he had made the right call.

I woke up in the ICU in an unbelievable amount of pain. I was so unprepared for just how badly this would hurt. I had a hard time speaking, but kept trying to tell them it hurt over and over. The first couple of days are a complete blur. I remember being in pain off and on and really not liking my ICU nurse. That's about it. Surgery was Tuesday morning and by Thursday morning they were moving me to a regular room...ahead of schedule. Not long after being in a room, I began to run a low grade temp. They were concerned, but not overly. They wanted me up and walking and I did, although it was so painful. Thursday afternoon the surgeon came in to remove my chest drain. To say this is the worst thing I have ever experienced is not an exaggeration. Nothing can prepare one for what that feels like. Even now, I get nauseous just thinking about it, but it was one less machine I was hooked to. He said I would likely be released the next afternoon...way ahead of schedule! I walked, I coughed, and did everything they told me to do, in spite of the pain.

That night my friend, Kelly, stayed with me. We had a pretty nice night. I slept better than I had in weeks. About 6am, my mom called to let us know she was on her way to the hospital and to get our breakfast order. I spoke to her and then got up to use the restroom. Once in the bathroom, I began to feel short of breath. I was not thinking clearly or I would have called the nurse from there. Instead, I used every bit of strength I could muster to get back to the bed and pick up the phone. I dialed the nurse and said "need help" before collapsing on the bed. Kelly sat up to see me and ran to my side. My nurse and her supervisor were in the room within seconds. They immediately saw me and called a code. The supervisor came over to me and said, "It is about to get really scary. There are going to be lots of people in here doing lots of things to you. I need you to stay calm. We are going to help you." In no time, my room was filled with nurses, doctors, radiology techs, lab techs, and respiratory therapists. I looked at Kelly and thought I asked her to get to my mom before she saw the hoopla and to call Brandon. I know now I only gave Kelly a look and she knew what to do.

In the meantime, one nurse stood and held my hand while they attempted to check my oxygen level. My hands and feet were blue indicating they weren't getting enough to even check via normal means. They did a chest x-ray right there in the bed, hooked me to oxygen, and took an arterial gas (blood draw from the artery to check blood oxygen. Ouch!). I could hear my mom in the hall asking what was happening and the panic in her voice broke my heart. Something was definitely wrong with my lungs but it was unclear whether I was suffering from an embolism or pneumonia. They decided to take me to CT. As I was being wheeled out of the room, I saw my mom and Kelly. I'll never forget the looks on their faces.

Heading to radiology was like something from a movie. I was being transported in the bed by 3 nurses. They were running and yelling at people to clear the way. Scary. By the time we got there, I was nearly unconscious from struggling to breathe, even with oxygen. They put me into the CT scanner and then came the results...I did indeed have a pulmonary embolism in my right middle lobe, but I also had aspiration pneumonia (pneumonia from inhaling my stomach contents at some point after surgery).  Either one of these is life threatening. The two together, nearly unheard of and incredibly serious. Just when I thought we were in the clear, the fight for my life really began...