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Sunday, May 9, 2010

News...

Well, I've been busy since my last post... so this is pretty long...

I started Humira on Wednesday! Four stab wounds later... ;) It was fine. The shots are like an EpiPen, so they are super easy to give yourself. They didn't really make me feel bad or anything, like the Remicade infusions did. I had a headache from Wednesday to Saturday, but that's not uncommon for me, so I don't even know if I can blame that on Humira! I will give myself the shots every two weeks, and should notice an improvement in 2-12 weeks.

The GI appointment was not really what I expected, I guess. I thought that this was gonna be the green light to do surgery #2, but GI Dr wants to give Humira a 6 week trial first. After 6 weeks, if I have zero inflammation in the J pouch, we can do surgery #2. He is kinda reluctant to do any kind of surgery because of my adrenal issues. The fact that I'm on steroids will, like my first surgery, complicate my healing and increase the risk of infections and troubles and stuff. Also, I will actually need extra IV roids during surgery and recovery, or my body will go into shock! So that's an issue.

After surgery, I will stay on Humira, and we'll see what happens. Best case scenario is that Humira will work to keep the pouchitis in remission. Then, eventually, they will try to taper me off Humira. Or, if it's as helpful for my joints as we're hopeful it will be, I can stay on it. The worst case scenario would be that the pouchitis flares up again despite this last-resort treatment. At that point, the J pouch will need to be removed.

If Humira does NOT work after 6 weeks, we will try it for an additional 6 weeks. If the inflammation is gone after 12 weeks, we'll do surgery #2. If it's not gone by then, I will need surgery to have the J pouch removed and have an ileostomy forever.

GI Dr wasn't super helpful with the dumping/nausea issues I've been having. He thinks (and he's probably right) that they're probably related to the number of meds I'm taking, but there's really nothing that can be done about that right now. Also, we're reaching the realization that the joint and adrenal stuff does not go away even when the GI stuff improves. That's kind of depressing.

I blacked out on Thursday... oops. I've still been dumping really bad. I drank liters of fluids and stuff to try to rehydrate... but I am just not absorbing ANYTHING, so it's not doing me any good to take in things by mouth.

Friday, I had a final at 9. I woke up in pain at 5, and no more sleep was gonna happen, so I figured, this is good, now I will just try to study. Around 8, Twitchy decided to start bleeding out and hurting and my stomach decided that nothing was going to stay in it. I pulled out my last hoarded Zofran (crazy expensive miracle nausea med that dissolves in your mouth) and even THAT didn't help. I spent the morning in the fetal position in the bathroom... so I didn't make it to my test. I am pretty disappointed that I bailed on my professor like half an hour before I was supposed to be there. I had to take my other nausea med (it knocks me out... which was honestly JUST fine with me at that point), because I HAVE to take all my steroids in the morning, and keep them in, or my body will literally go into shock. Thankfully, the meds kicked in, I had a small nap and was able to get my 'roids in. Since I've been dumping everything for the last several days, and was dehydrated to the point of blacking out on Thursday, you can imagine that I was not feeling very well by this point. My stomach was upset and really crampy, Twitchy was very raw and bleeding and unhappy, my pain was through the roof, heart was racing, seeing spots... I called the endocrine people. They decided I need to increase my steroid dosage. It's frustrating because I'm trying so hard to get OFF the steroids, but we keep having to increase the dosage just to keep me stable.

Anyways, I was still feeling pretty horrible. I called TCU Dr, who said it was his office for IV fluids or hospital. He suggested hospital pretty strongly, just because they can give me IV pain meds, too. I almost felt that bad, but not quite. I just HATE hospitals and the rigmarole of going to the ER. So I went in to TCU Dr, and he was like, "Whoa, you look pretty awful." He very kindly gave me IV fluids in the office, staying until 5:30 on Friday to make sure I stabilized and was okay. I was really dry, so it was very tough to even get a decent IV in. Thankfully, I perked up after a bit! My heart settled down for the first time since last Thursday, and my brain started feeling more normal - not "fuzzy." Since getting fluids was so helpful, the topic of getting a PICC line so I can get fluids more easily came up, but I still feel like we need to find the source of the fluid balance problems instead of hooking me to an IV pole all the time. But I have to admit I felt about 300% better after the fluids. The good feeling lasted until this morning, when I started feeling shaky and my heart started going nuts again. *Sigh*

My pain levels have been a little bit better. I'm still really hurting, but most of the time, it's at a level I can deal with without being completely incapacitated, and the pain meds (which I'm taking round the clock) are helping more than they were, which is nice. But it's honestly still pretty bad.

This weekend, Steph was in the area, so I got to see her! Yay! Stephanie had the J pouch surgeries in November and February. Her surgery outcome leaves something to be desired... please keep her in your prayers! Life is definitely livable for her, but she is still sick and in pain more often than expected, which is just no fun at all, and quite discouraging.

I'd appreciate prayers for wisdom and guidance for me and the doctors. My life has been on hold for quite a while. I was supposed to graduate on Saturday. But I didn't. I thought that I'd be having surgery in a week or two, and now instead it's in 6 or 12 weeks. I need to figure out what I'm going to do for health insurance after August... but how can I get a job when a). I'm this sick and b). I'm going to have surgery in 6-12 weeks? How do I go about living life when I can't even predict if I'm going to be able to make it out of bed in the morning, if I'm going to be in too much pain to function or too dizzy to stand up or too sick to leave the house? I truly say these things without bitterness in my heart... I just honestly don't know what to do.

It makes me think of James 4:13-14: "Come now, you who say, "Today or tomorrow we will go to such and such a city, and spend a year there and engage in business and make a profit." Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while, and then vanishes away." It also makes me think of Matthew 6: "Look at the birds of the air, that they do not sow, neither do they reap, nor gather into barns, but your heavenly Father feeds them. Are you not worth much more than they?... Do not be anxious then... for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness; and all these things shall be added to you."

So that's my answer - I just need to keep seeking God, and He will provide and guide!! I've seen Him do that amazingly. I wasn't sure that Humira was something I should do. My parents and I prayed and decided that God would lead "yes" if we somehow got Humira for free. Otherwise, it was a no-go. Humira costs upwards of $50,000 per year. Thanks to God's incredible provision through the pharmaceutical company that makes Humira, I am receiving it at NO COST until August. That's right. That's like someone giving me a down payment for a house. That's unbelievable. God led and provided with such amazing clarity. If God can do that, how can I not trust Him to continue to direct me in the way that will bring Him the most glory?

Hannah ;)

1 comment:

  1. Hannah, I've been wondering how you've been doing, didn't hear anything so was getting worried. I'm glad you've started the Humira and I'm praying it will help. I understand where you are on what to do now since you don't know day to day how you're going to feel. Believe me, I've been there. I was very grateful that I was laid off last year, although, at the time it seemed like the worst thing ever. I've been able to collect unemployment throughout my process which has helped us tremendously. If I hadn't been laid off, I would have probably been fired and who knows what else since I wouldn't have been able to work! As they say, God works in mysterious ways and I'm sure things will work out for you. Just put your trust in him and keep your head and spirits up. Also, don't forget to smile and think of at least one positive every day! Love you lady, Lisa

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