Day 12: Update and Recap

I was supposed to go home this morning but my counts weren't high enough. They rechecked them at 2pm and my white cell count was 1.1 and my platelets were at 23...just enough to be sent home. Unfortunately, because they keep bouncing up and down, they've kept me another night atleast. They want to monitor me. They have to make sure i'm safe flying home. Even though I know thats right and safe and it's what I have to do, i'm having a discouraging day. I'm getting homesick and frustrated. But I know God is keeping me extra days for my own safety and when I finally get home, i'll appreciate it so much more. I'm having a rough time with the hair loss...bald...*shudder* but I'm trying to stay strong and see it as a symbol of my strength and recovery.

It's emotional for me to consider what i've been through over the last 6 years since my original diagnosis on March 27, 2007. A date i'll never forget. A date that changed my life forever...and honestly, for the better. When I was first diagnosed, I'd never even heard of Crohn's disease yet it was destined to alter my way of life forever. I was in and out of the hospital at first and trying every medication under the sun. By my senior year of college I was going to infusion centers every month and giving myself injections every other week. I managed with different meds and steroids until the summer I graduated with my Master's Degree.

Then the recent flare started...3 years ago...and it was relentless. As time went on, I had to stop going to parks or on walks, working out, going to movies or to bars with my friends. No one understood why I couldn't do the things they did. On top of it, I was battling moving from place to place, being homeless, trying to find a better job, dating an alcoholic, abusive boyfriend for 2 years, before finally moving back home to live near my family. Once I moved, I started a better job but was forced to take medical leave after only 3 months because of my Crohn's. I did break up with the boyfriend when i moved, hoping the stress relief would help some of the medications work better for me. Unfortunately, they didn't. I continued to worsen with daily fevers, chills, vomiting, diarrhea, bleeding, excruciating pain and cramping. My life was spent in the bathroom and throwing up in trashcans and plastic bags in the car. In October 2011, I was hospitalized and put on TPN and had blood transfusions. I was hospitalized several times after that as well.

In September 2011, I read a blog that had all of Dr Burt's information about the stem cell transplant for Crohn's. I knew it was a long shot, but my only other options were traveling internationally for risky hookworms or a full colostomy. Something I still could not be prepared for. I printed all the research I could find, took it to my doctor and told him to refer me. To my surprise, he agreed and immediately sent my medical records to Dr Burt for evaluation. By December, I was finally able to go to Chicago for my first evaluation. My blog explains the rest.

Thank you for reading and keeping up with my progress. And I promise I will keep updating as everything progresses.

God is staying good to me and keeping me strong. I couldn't ask for more.

Day 11: photos of my transplant process

 First few days of chemo

 Hospital food! Not so bad!

 Last day of chemo! 

 Bringing in my cells

 My stem cell transfusion

Day 11

Well I was hoping to go home today but I'm not quite there yet. We will see about tomorrow. My platelets are right where they need to be to go home but they want to be sure they're continuing to rise before sending me home. Plus my white cell counts are at 0.8 and they need to be at 1.0. I'm taking neupogen shots still so they should be up in the next couple of days.

I've barely had any nausea or pain. I'm only using the bathroom a couple times a day. It's loose but they said its most likely because of all the anti rejection and anti viral meds. I feel good. I'm just exhausted. My body has been put through the ringer and I'm feeling it. I think once I'm home with my family in my own house and in my own bed, I'm going to feel amazing!

Amy, Dr Burt's nurse, just discussed my discharge instructions with me which is exciting because it means I'm almost done and I've made it through!

On a different note, my blog was featured on Healthline.com's Top 11 Crohns Blogs of 2012! How exciting!! They specifically mentioned my positive outlook despite my condition and that seriously brought tears to my eyes. I knew I was going through this for a higher purpose of reaching others and that confirmed it for me! That made all of my struggles worth it because someone is reading and someone is getting something from it. God is so good!

Day 10

My counts are finally going up and I should be going home soon! I feel better and I've already eaten twice today!!! Yay!!! Dr Burt said everything looks good and when he pressed on my belly...no pain!!! I'm still weak as can be expected but I do see a difference already. Praying this continues to get better!

Also I haven't used the bathroom in the last day but when I try only blood comes out, Dr Burt says its common in Crohns patients of his. It's almost like the body is expulsing the disease from my body! Praying thats true!

Day 9: no hair, no shame

I  not ashamed of having no hair. I'm embracing it. It's part of the process. It symbolizes strength and road to recovery. I'm proud of it. 

 

Day 9

I shaved my hair off today. It wasn't as emotional as I anticipated. I'm coping well. The pain has been better today. Lots of diarrhea last night with soooo much pain but today has been much more manageable. They switched my picc line because they suspected an infection in it. They're doing stool tests now for more research as to where this infection is coming from. I'm on tons of antibiotics still that will cover all areas of my body. I'm taking two neupogen shots a day to increase my white blood cells.

The doctor says I'm doing really well an they expect discharge this week. My appetite is still crummy but I get like that in hospitals. I eat better at home. But my Crohns symptoms seem better. I feel like I'm feeling more of the transplant side effects right now. But time will tell !

Day 8

Yesterday was rough. Bad tremors, fevers, really high blood pressure, very low heart rate, bad stomach pains. Today I had to have another platlet transfusion and my blood pressure has been super low so no blood transfusion today. Still battling severe abdominal cramping and stabbing pains but they only come a few times a day, in between that, I'm pain free.

I'm on tons of antibiotics and anti viral and anti rejections so Im covered for the infection they found. My nausea is way down and no diarrhea. Just the pain, especially while trying to use the bathroom. It gets so bad I shake and vomit. No fun.

Amy says my counts could be up as soon as Monday. Then once the pain goes away, I go home!!

Day 6

Day 6 I now have chemo brain. Basically I can't remember anything that  or has happened or was said. Sorry if it seems kinda loopy. I am lol not from any new meds. Just chemo brain and sleep deprivation. It took me an hour to post this one. I would be awake and talkin then just slap asleep I think a lot of this memory loss is sleep deprivation

Will have to talk to everyone tomorrow when I'm not falling asleep in between each word

Day 5 afterthought :)

If anyone wants me to post on a certain topic, Crohns related of course lol please leave a comment to this post and I will start posting more! That can include personal updates on my stem cell transplant, or any general info you may want to find but can't. Let me help!

Day 5: still neutropenic

I am so sorry I haven't updated recently. Ever since the day before my transplant day, I was feeling so weak and nauseas and in a good bit of abdominal pain. The pain meds I had been getting were making me worse. So when I realized that, I had them take me off everything but Norco which helps a lot more.

The day before my transfusion, I started getting these bad abdominal cramps and I'd sit on the toilet for forever in writhing pain and nothing would come out. This has continued. They gave me a laxative for the first time the other day. And now, while its still sooo very painful, it's regulating to once or twice a day. The nausea is getting much better and I'm able to sleep again.

Day 0: September 13, 2012 10:18am I had my 2nd birthday. They brought the cells in Luke something from a movie, steam and all lol they blessed the cells (my choice) and started the infusion. They came in a small bag that looked like blood. The second they went in I tasted creamed corn, started breathing heavy and started vomiting through the entire thing. But Dr Burt was in the room with me and in 30min it was all done. I was pretty suck for the next two days but I'm gradually getting better.

It's now Day 5 and I'm full of energy with the occasional pain and nausea and a few other issues...needed 2 blood transfusions, one platelet transfusion, a couple bad fevers, and I have a lot of blood in my urine. So they're monitoring me and as soon as my counts go up, I go home!! Yay!!  Just be praying this really works and I'm gonna be better than I can remember being!

Day -2

Have been really sick today. Very weak. Had to have a blood transfusion but I'm all done with chemo now. Almost there...

Day -3

Last day of chemo is tomorrow!! Yay!! I've tolerated it fairly well. They have me on cytoxan and campath today and tomorrow. They kept the cytoxan on a slow trip and loaded me down with Benadryl and I've been doing well. Getting weak but went 2 days with no diarrhea! And minimal pain now! I'm feeling more myself again. Just as soon as I finish this :)

Day -4

Taking fludarabine, cytoxan, and campath today. Was having a little reaction so they loaded me down with tons of Benadryl and now I feel much better. I can't really eat but my Crohns symptoms seem to be better if not almost gone. They said I'll lose my hair in a couple weeks. And they said my worst days will be these last few days of chemo and the day of transplantation.

Day -5

Started cytoxan with the fludarabine, strong steroids, some anti viral meds, and mesna.  And they have me something to make me per a lot so the cytoxan doesn't give me bladder issues. I've had to take a lot of Benadryl because my nose was burning and my head was killing me. They also gave me merinol. Which is medicinal marijuana and that helped a lot but made me sleep a lot.

Day -7

Started a 4 hour course of magnesium today and now I'm on another 30min dose of fludarabine. I'm a little nauseous today. But I feel like its more my normal Crohns nausea. Will keep you all updated!!

Day -8

Just started chemo today. The picc line had problems going in right so that took 3 hrs yesterday. Then I was admitted yesterday evening. Dr Burt came in and gave the ok to start chemo. Today I'm getting a 30min dose of fludarbine. Almost done for the day!