Things I’ve Learned.

18 03 2012

There are a few things I’ve figured out recently.

1. I need a lot of sleep. I’ve been telling people that for years, but I think deep down I always wished I could be one of those people that sleep for two hours and wake up ready to go. I’m not. Turns out, when I get eight or more hours a night, I’m a much happier person.

2. People don’t understand that as a 24 year old I go to sleep earlier than my second graders. But that’s ok.

3. Sometimes it feels just as good to say no and step back from commitments as it does to get involved. Taking that extra hour a week to do something for me, like walk the dogs or read a book over lunch or bake cookies makes me feel much more centered and whole.

4. Sometimes my mother is right. Scratch that, she’s right most of the time. The entirety of this post up to this point consists of things she’s told me for years. Right now I’m sure she’s somewhere shaking her head and rubbing in the fact that she is wise and she told me so.

5. Tysabri has got to start working soon, right? In that vein, I’ve taken down my Prednisone a notch. I’m hoping that’ll make me more mellow and easier to be around. It’s sort of a Dr Jekyll/Mr. Hyde scenario.

6. I am reminded again and again that the experiences I have had can be used to help people around me and advocate for others. Today at church a girl told me a family member of hers is going through a similar surgery to mine tomorrow and her family is having a hard time processing it. She didn’t even know that I had that experience, and I was able to just sing the praises of an ostomy and how it has changed my life. The funny thing is, before my surgery, I didn’t hear people having these conversations anywhere. Now I feel like God puts those people in my life so I can offer a little bit of light. Not all challenges are bad. Not all scary experiences need to feel torturous. There is nearly always a light at the end of the tunnel and all of these obstacles make us who we are. They build character and add layers and nuances to you as a person. They make you more interesting and more empathetic and more beautiful and I am thankful every day for the ability to appreciate that.

What’s up with this weather guys? March and 82 degrees? Not ok! I miss cool, rainy days. Sweatshirt weather. But I’m doing everything I can to embrace the sun and count the joyful moments in my life.





Tysabri

21 12 2011

I just had one of the best doctor appointments. Seriously.

I’ve been freaked out about Tysabri for a long time and every doctor I’ve talked to hadn’t helped the situation. That drug seems incredibly scary and they had no real data to offer me suggesting that it would be a magical thing. Until today.

Today I met with my new doctor. He is one of the best doctors in the country and he’s absolutely amazing. At the University of Chicago they have more patients on Tysabri than any other institution in the country so they know what they’re doing, and my doctor is an expert on this medication. He is the first person that I’ve talked to that has been able to answer all of my questions satisfactorily and give me the information I need to feel comfortable with the drug.

So here’s the dealio.

Tysabri is a slow-acting drug and will take 3-6 months to really kick in. It works by blocking new white blood cells from attaching to the intestines and causing more inflammation, but it allows for normal immune activity in the rest of the body, which means I will be able to fight off kid sicknesses that I’m constantly exposed to. It also is one of the most stable drugs on the market and research shows that if it’s effective, it has at least an 80% chance of staying effective for over three years. Three years! That’s incredibly long for a medicine. I’ve been on Cimzia for less than two years and I really felt like that had a good life time as far as medications go.

They ran a test to see if I had the virus that causes the scary brain disease and I’m negative for it which means I have a super tiny chance of that side effect. They also said that what people don’t talk about is that PML, the scary brain disease, happens in immunosuppressed patients, i.e. patients who are on meds that I’M ALREADY ON. As in Prenisone and Cimzia. Yeah, nobody said I’m already at risk so I might as well take a ¬†medication that works!

Once they confirm that I’m all good to go they will get me set up for a once a month infusion and I get to go off my Cimzia and azathioprine and will only be on Prednisone as long as it takes for the Tysabri to kick in. I’ll be able to slowly taper over the next few months and then that’s it. All I’ll have is an IV once a month for an hour. ¬†Which is crazy incredible.

I’m feeling really positive about this and so is my family. We are excited about the new doctor and excited about the possibilities that this gives me. He even said that next year a new version of this medicine should come out that should make it even less likely to cause PML, and if all these things stop working, even more new medicines look likely to be ready in the next few years. So if Tysabri works like it should and gives me a three year window, I’ll have even more options to look at from there.

Thank you all so much for the prayers. I firmly believe that they work. If I hadn’t gone to this specific doctor I never would have been comfortable making the decision to try out this medication and it would have made me constantly stressed out and anxious. This is the first doctor in a long time who has looked me in the eye and said, “You’re going to be just fine,” and meant it. How awesome is that?





Mission Accomplished!

18 11 2011

We had pretty good news today!

My scope went really well and everything looked good. While that doesn’t show what’s going on with the whole middle part of my intestines, it bodes pretty well. The steroids are working. While they aren’t supposed to be a long term drug, at this point they are recommending that I stick with them for a while.

I still need a CT scan but I’ll get that at home. Hopefully I’ll get it before my appointment with my new doctor, Dr. Rubin, at University of Chicago. Mayo was pretty excited that I was going to be seeing him which makes me happy. He specializes in hard to treat cases, which I am.

At this point, unless I go off the steroids and cause a flare, I don’t really qualify for a lot of things. You need to prove a flare before you are allowed to take Tysabri or be a part of clinical trials. The steroids always work well for me so my inflammation is down. As long as the CT scan looks good, I’ll be ok for a while.

The prednisone is killing me though, so they are letting me taper my dose. I’ll go down five mgs a week until I get to twenty, which is far better than forty. The thought is that if I get a maintenance dose working for me the Cimzia might stretch out for a while longer, which would be fantastic.

Overall, this was a pretty good appointment. It sucks to have to be on steroids, but the side effects of those are far less than that of Tysabri or some other scary meds. This will buy us some time until new drugs can be approved and put on the market.

Before my appointment today I tried to walk around and take pictures of Mayo to give you guys some idea of the scope of this place. It’s incredible. It’s huge and there is art and everything is shiny and new and the people are just so nice.

Walking up to one of the hospital buildings

It was super windy and we literally almost blew through these doors.

Chihuly glass hanging from the ceilings

Andy Warhol has quite a bit of art hanging around here...

Anyway, I know I’m blasting you with pictures but this place is hard to comprehend. That’s just a little taste. Now we’re relaxing before our drive home tomorrow morning. I’m looking forward to being home, seeing the dogs, and taking less steroids tonight. Success.

 





101.3

29 10 2011

I was hoping to update today saying that I woke up without a fever and I’m miraculously better. Unfortunately, not so much.

Instead, I woke up with a fever of 101.3. Then I had to take tylenol and get to work.

My family and I have been having serious conversations. My mom wants me to go back to Mayo Clinic and get checked out there. My parents both want me to get back on prednisone, and my mom wants me to be on IV steroids.

My doctor wants to see if the Cimzia can turn me around this weekend. If it doesn’t, we have to start thinking about backup plans. This, as I’ve said before, is a pretty scary thing.

Here’s a lesson for all of you. It’s so important to be aware of your medication’s side effects and to be an advocate for yourself. In that vein, we’ve researched the other medication that doctors keep bringing up, Tysabri. Here’s a link to the important safety information. A brain infection that has no treatment or cure? Um, not ok. Also, a greater risk the longer you are on the medication as well as a greater risk if you have been on immunosuppressants in the past (which all my medications are) means that no matter what doctors say to sugar coat it, the risk is serious.

Have you ever seen Joe vs the Volcano? Super amazing movie that nobody has heard of. Joe is diagnosed with a “brain cloud” and has six months to live. It has no symptoms. We call this brain infection that Tysabri has a brain cloud, although it really isn’t as funny.

So as a patient, it’s my job to tell doctors that I’m uncomfortable with this treatment. It’s my job to do the research and find all the information I can. Could this medicine really help me? Yeah, it could. But the risk, although mathematically small, is too much for me.

When I thought I was allergic to rubbing alcohol, even the allergists I saw told me that it was “impossible, because it was too rare.” First of all, that doesn’t make sense. Rare=impossible? So I researched medical journals. No, not google, webmd, or wikipedia. Then I was able to take that information with me to doctors and finally get the consideration I needed.

My medical life is in limbo right now. I don’t know what we’ll do next, if I’ll wake up tomorrow feeling wonderful or if we’ll be back at Mayo Clinic before Christmas. But I do know that I’ve done everything I can to be well, including being an advocate for myself. I am so tired of hearing people who don’t find a doctor that does a good job because they are afraid to try. I’ve shopped around for doctors until I found one that I love. Don’t settle when it comes to your health.