I'm alive

August 14, 2009

Today I need to purge some of the memories that are stuck in my head.

Just a little background for those of you who may have lost track or didn't know: I was hospitalized on March 24, 2008 for what they found out a few days after that was a severe case of ulcerative colitis. I was 4 months pregnant at that time. I gave still birth to our daughter Harper on April 22, 2008 at five months pregnant. And here is where the memories are particularly pestering me today: April 25, 2008.

When we lost Harper, I had a drastic dip in the number of bowel movements I was having a day, which was a good thing. With the IV steroids, assacol, cyclosporine, and mesalamine we managed to get my number of bowel movements to about 10-15 a day. And then the 24-hours preceding our knowledge that Harper's heart had stopped beating, my number went down to either three or four - I don't remember which. So on the morning of April 25th, Dr. C came into the room to check on me:

"You still have four bowel movements?"

"Well, I had a few more. I think I've had seven in the last twenty-four hours," I said, reluctantly hopeful.

"Seven still okay. You want to go home today?" he asked with a big smile on his face.

"Yes," I didn't hesitate. "Really? I can go home?"

"Yeah. Your bowel movements have slowed down for a couple days now. You can go home today."

I couldn't believe those words. I was prepared to stay in the hospital until I delivered Harper, which was supposed to be in August. Really, what I was prepared for and was expecting to happen was to die there. The thought that I could go home was this unbelievable dream to me. Home meant health and comfort and peace and happiness to me (or so I thought. I wasn't prepared for the sadness and fear - but that's a different blog for a different day).

"So even though my bowel movements are still soupy like diarrhea and there's a little blood in there, I can go home?" He told me I could. And so everything was set in motion. I didn't know how long it would take to get everything ready. All the teams still had to see me and give their okay and write scripts for me to take home with me. I had been able to eat a soft diet for the last two or three days, so they knew I would be able to nourish myself. The plan was to send me home on a high dose of oral steroids (and a bunch of other meds) and hope that that controlled my UC (I still had my colon at this time mind you).

It all happened so quickly for me. I had been nourished by the TPN bag through my PIC line for the last month almost. They came in and unhooked the TPN and pulled the PIC line from my arm. But then something odd - they told me they wanted to give me another blood transfusion because my numbers were a little low and they wanted to send me home on solid footing. Looking back now I just don't know about that - really? You're going to give me a blood transfusion and then I'm out the door in less than an hour? If I need a blood transfusion today, isn't there something still very wrong?

And then there was the matter of Harper. They had told us we could take all the time we needed in deciding what to do about Harper, but I couldn't leave until I knew the arrangements had all been made. "Please Jeremy. Can you take care of that? Can you find a funeral home to have her cremated? I can't leave here knowing she's there in the morgue and that I haven't taken care of her." He told me he would take care of it, and he did. Before we left he had everything set up for the funeral home to come and get her and have her cremated.

We were given our discharge instructions, prescriptions for too many medications for me to wrap my head around (especially because my mind was still pretty foggy - I was confused a lot). Mom and Sara had bought me some clothes to wear that fit me in my larger state (carrying 100 pounds of fluid). Here's another thing that gets me. When I asked Dr. C how long it would be before I could go back to work he said, "A week." "What?! I can't even walk," I said to him. He asked if I wanted two weeks. I almost broke down in tears. There was no way. I really could hardly walk. I felt this incredible pressure from that to be better when I wasn't. Dr. A came in and I asked her if that was feasible. "No. You'll need much longer than that. How much time do you want? A month? Six weeks?" I breathed a sigh of relief. That I could wrap my mind around. I could get stronger then.

So I was carrying 100 pounds of fluid at this time, right? And people kept telling me it would come off, but no one told me how long it would take for it to come off. So I prepared myself mentally to be wearing XXL clothes for the next year, exercising and working out diligently, and to get horrified looks from friends who hadn't seen me in the past few weeks because I was almost twice the person I had been before. I was prepared. I was going home though, so none of that mattered.

The nurse wheeled me around the unit so I could say good-bye to all the other staff who had helped me over the last month. I sobbed. I sobbed all the way out to the car at the joy in leaving the hospital and the pain of leaving my daughter there. I was a mess, plain and simple.

We got home and Mom and Sara went to get groceries and Jeremy went to pick up my medications. Jeremy put together a bench in the back yard for me to sit on because I couldn't get in and out of any of the other chairs because of all the fluid. And my skin hurt so badly. I was so weak I could hardly walk. I walked my tiny four inch steps around the dining room table. I tried walking in the back yard, careful not to lose my balance by looking up when I walked. And then I started urinating - God bless the lasiks (meds that make you pee). I was weighing myself every day (as they did in the hospital). I kid you not, I urinated off 13 pounds of fluid one day. Just like that.

But things got bad. I had a fever the second night. The third night my bowel movements started increasing again and turned to pure water, like someone turned a faucet on. And there was still blood, but the amount of blood was increasing. The blood started coming out in clots. The fourth night we were home the worrying got to be too much.

"I think we should go in Abby. They said if the number of stools increased or you ran a fever you should go in," Jeremy said with nothing but fear on his face. No sooner had I agreed with him, that it was time to go to the ER, when I started to black out. I was losing consciousness. He called an ambulance. The ambulance came. The guys strapped me to the gurney, and then I was without Jeremy in the back of the ambulance.

It was the night of April 29th. I passed out in the hospital bathroom with Jeremy there. I was passing blood clots. I had nothing in me. I was going to die, I just knew it. They wouldn't let me leave the room so I had to go on the commode next to the bed and again as I passed the blood clots I blacked out. It felt so good just to let go. I couldn't hold on any more. But then I heard Jeremy's voice yelling my name. I could feel people holding onto my limbs and trying to lift me, but I couldn't respond. And I just wanted to sleep. And then I could see again. I saw Jeremy and the nurse lifting me onto the bed. "What happened?" I asked. Jeremy told me I passed out on the commode. They wouldn't let me leave the bed any more. So they kept having to bring the bed pan because my diarrhea was getting worse. And I filled the bed pan with blood and stool until it overflowed onto the sheets. And then my whole abdomen began to hurt. I moaned and begged for help. "Please help. Please it hurts. Please make the pain stop!" They told me I was in pain because my colon was so distended. I was writhing in pain. "Oh it hurts! It hurts!" Finally the medication they gave me subdued the pain and made me sleepy.

I spent 36 hours there in the ER. I woke up at one point to find my dad there. My potassium was low so they gave me an infusion, but it burned. I yelled for the nurse because my veins felt like they were on fire. The ER was busy, so it was Jeremy who was helping me with the bed pan. Finally I got up to my room, out of the ER. I think it was Dr. G himself who came and saw me then, not just one of his students or residents. He said that the dose of oral steroids was not strong enough to treat the UC. They put me back on a high dose of IV steroids. But things didn't get better for me. Dr. V came to see me every day to talk about surgery. And finally, ultimately, on May 8, 2008 my colon was removed. I think I was discharged to home the second time on May 14, 2008.

And then there was the hospitalization for my second surgery in October. And then there were the nightly IV's at home for two months and the home health nurse. And then the hospitalization for my PIC line infection/UTI. And then there was the hospitalization for my peristomal skin infection that ultimately led to my third surgery in December. And then there were the 10+ weekly dilations. And then there was my hospitalization for the flu. And there was blah, blah, blah.

So writing about all this, I'm feeling like I don't need to be so hard on myself for not being over all this. Seriously Abby. You are not over this and you shouldn't be. You had loss upon loss upon complication. You are still healing, and that's okay.

And while I really needed to purge these things, I feel like I can't end this blog with the whole thing being so negative. Do you know that Jeremy and I ran six miles last Sunday together? Do you know we're running six miles this weekend too? Do you know how much I love my husband and my family and my dog and my home and my job? And as I've been reminded many times, I'm alive. Yes I am. I'm alive.

So, sorry to be such a drag, but I really did need to just get it all out (again). This probably won't be the last time either.