I made it through Tysabri #2 okay. They called the TOUCH program because of my worsening fingers and cognitive stuff. Imagine that, a facility that follows protocol! Thanks to my old friend, er not old friend, a friend I've had for a long time that shared lunch with me on such an emotional day for her. Hugs to BJM.
Not even a bruise from the IV which was put on the inside of my right hand. They are some good IV stickers over at the infusion palace. This time I held the remote and switched channels and watched bits of about 5 different cable channels. I don't have good cable at home, just the $8 a month cable that has a few extra channels thrown in for kicks and giggles. I also elected for a warm and pleasant smelling blankie to cover me up while I "relaxed".
I wanted to smack Sally Field in the face again when her once-a-month Boniva commercial came on. Gag me.
Today is my second visit to the new neurologist's office (neuro #5) to see the P.A. I am hoping for a good visit and I will be asking about my MS symptoms, a new MRI, and the supplements I mentioned the other day: quercetin and omega 3 fish oils.
I feel a weight lifted from having turned in the sick bank leave papers. It's done and the committee will say yes or no and there's not much more I can do about it. It's out of my hands and I've done all that I could for that.
My dad is having more problems but did not go back to the ER yesterday; they almost had to go but are playing it by ear for the moment. The heart catherization has been put off for the moment until this other stuff is done playing itself out. Let's just say there has been excessive bleeding, vomiting, and chest pain from a man who had surgery about 20 years ago and told he had about 10 years to live then. Plus, he secretly smokes which he knows, knows, knows is against every rule in his medical book. Eh, men!
I slept more deeply last night and feel tired from Tysabri #2 but if it works, then all of this will be worth it. Maybe there will be a nap in my future this afternoon. Time to go get dressed and ready for the appointment.
Don't forget to vote whoever you choose to vote for in today's election.
Showing posts with label TOUCH protocol. Show all posts
Showing posts with label TOUCH protocol. Show all posts
Tuesday, November 4, 2008
Tuesday, October 7, 2008
Happy belated and infusion paradise
Jiminey Crickets! As I was driving home from work this morning I realized that it is now the month of October (doh!). I also realized that I had not wished one of my oldest friends, er perhaps I should say one of the friends that I have had the longest, a happy birthday a few days ago. So here it is BJM, a belated birthday wish from your loser friend who was too busy wallowing in her own misery to think about someone else.
I took today off as I was dizzy this morning and tired out after Tysabri day. Plus, I was panicking last night and cried again about work, after not crying for a few days. I know I "look" okay to everyone else but inside I feel like it's a freeway backed up in California at rush hour. My thoughts are sometimes racing each other for an open spot and other times they're non-existent.
The Tysabri thing was a breeze. The worst part was waiting an hour for the doctor himself to come in and introduce himself before the infusion started. The place I go to is a palace. It's an infusion paradise. It has a chandelier in the waiting room. It is decorated as if it's a new showcase home that someone is trying to entice you to buy. There is wainscoting for crying out loud.
You get infused in your own little private suite. They have these funky chairs that are better than recliners but hard to climb in when you're five feet tall and about the same width. The doctor himself got me in the hand on the first stick. I could watch my own TV and or bring a DVD to watch if I so desired. They have remotes and the sound comes out by the back of your chair near your ears.
They have a coffee "bar" with coffee (duh), hot chocolate, and juice. I think there were some cookies or crackers there too. Nice big bathrooms if you must drag your IV pole with you and relieve yourself before the infusion is over.
Two nurses' stations to take care of what I think are about 16 suites. Lots of nurses always walking around with their timers checking on people. I was in suite number 7. Must be my lucky day, huh?
There is a real drape type thing to close off your suite for the most part. You get a pillow and a blanket, if you want one. You have a call button just like if you were in the hospital. People are constantly monitoring everyone in there.
The infusions are not only for Tysabri. A teenager was there for some blood/iron transfusion. The guy next to me was getting his IV Solumedrol and unfortunately having all sorts of problems while that was happening. The nurses never acted like he was an imposition. There were children there and older people there hooked up to IVs. The nurses called the doctor over from the other side of his building whenever he was needed and he came.
The building itself is both a pediatric place and an infusion place. The infusion doctor is a pediatric oncologist, I think, by training. He built this palace to make it nicer for both children and anyone who needs any type of infusion. The offices are even done up the way the rest of the place is. It's amazing; I cannot say this enough. This is way better than having it done improperly by my previous neuro in his office while not following the TOUCH protocol.
Infusion doctor/semi-god is telling me that his current patients are seeing a change somewhere between the 2nd to the 4th infusion. He infused Tysabri before it was taken off the market and strongly believes in it, based on his patients' anecdotal experiences. He has asked me to take 2000 IU of D3 daily. He also wants me on a multivitamin with iron. He's a believer in that sort of stuff. He recommends the vitamin D to anyone in this area (the Northeast US).
So today I am dizzy and tired and still depressed. That last part is great for my eating, or rather lack of eating. Cheesecake and Pringles are still here. Yesterday I had 2 small slices of pizza and a half cup of cereal with milk and some water. I also ate a few almonds while infusing.
I'm still having some trouble falling asleep at night. I attribute this to the depression. I prefer to be alone but I am lonely. I still feel like I am in the pit of despair and I don't know how I can fix it to make everyone happier. I feel like each day is another day I move farther away from the human race. I only feel safe in my apartment. Going out into humanity is frightening. Everyone expects things that I just can't give now. The increase in meds have made life easier chemically but the panic and depression are still there like bubbling magma waiting to shoot out the volcano.
Now I am going to rest because I need to do so. I hope your day is going well wherever this finds you. And, of course, to my friend BJM I am so sorry I am such a dolt. I don't even have a card yet. I feel really bad about all of this.
I took today off as I was dizzy this morning and tired out after Tysabri day. Plus, I was panicking last night and cried again about work, after not crying for a few days. I know I "look" okay to everyone else but inside I feel like it's a freeway backed up in California at rush hour. My thoughts are sometimes racing each other for an open spot and other times they're non-existent.
The Tysabri thing was a breeze. The worst part was waiting an hour for the doctor himself to come in and introduce himself before the infusion started. The place I go to is a palace. It's an infusion paradise. It has a chandelier in the waiting room. It is decorated as if it's a new showcase home that someone is trying to entice you to buy. There is wainscoting for crying out loud.
You get infused in your own little private suite. They have these funky chairs that are better than recliners but hard to climb in when you're five feet tall and about the same width. The doctor himself got me in the hand on the first stick. I could watch my own TV and or bring a DVD to watch if I so desired. They have remotes and the sound comes out by the back of your chair near your ears.
They have a coffee "bar" with coffee (duh), hot chocolate, and juice. I think there were some cookies or crackers there too. Nice big bathrooms if you must drag your IV pole with you and relieve yourself before the infusion is over.
Two nurses' stations to take care of what I think are about 16 suites. Lots of nurses always walking around with their timers checking on people. I was in suite number 7. Must be my lucky day, huh?
There is a real drape type thing to close off your suite for the most part. You get a pillow and a blanket, if you want one. You have a call button just like if you were in the hospital. People are constantly monitoring everyone in there.
The infusions are not only for Tysabri. A teenager was there for some blood/iron transfusion. The guy next to me was getting his IV Solumedrol and unfortunately having all sorts of problems while that was happening. The nurses never acted like he was an imposition. There were children there and older people there hooked up to IVs. The nurses called the doctor over from the other side of his building whenever he was needed and he came.
The building itself is both a pediatric place and an infusion place. The infusion doctor is a pediatric oncologist, I think, by training. He built this palace to make it nicer for both children and anyone who needs any type of infusion. The offices are even done up the way the rest of the place is. It's amazing; I cannot say this enough. This is way better than having it done improperly by my previous neuro in his office while not following the TOUCH protocol.
Infusion doctor/semi-god is telling me that his current patients are seeing a change somewhere between the 2nd to the 4th infusion. He infused Tysabri before it was taken off the market and strongly believes in it, based on his patients' anecdotal experiences. He has asked me to take 2000 IU of D3 daily. He also wants me on a multivitamin with iron. He's a believer in that sort of stuff. He recommends the vitamin D to anyone in this area (the Northeast US).
So today I am dizzy and tired and still depressed. That last part is great for my eating, or rather lack of eating. Cheesecake and Pringles are still here. Yesterday I had 2 small slices of pizza and a half cup of cereal with milk and some water. I also ate a few almonds while infusing.
I'm still having some trouble falling asleep at night. I attribute this to the depression. I prefer to be alone but I am lonely. I still feel like I am in the pit of despair and I don't know how I can fix it to make everyone happier. I feel like each day is another day I move farther away from the human race. I only feel safe in my apartment. Going out into humanity is frightening. Everyone expects things that I just can't give now. The increase in meds have made life easier chemically but the panic and depression are still there like bubbling magma waiting to shoot out the volcano.
Now I am going to rest because I need to do so. I hope your day is going well wherever this finds you. And, of course, to my friend BJM I am so sorry I am such a dolt. I don't even have a card yet. I feel really bad about all of this.
Friday, August 29, 2008
This is Tysabri
This is Tysabri. It's not an injection like the other MS meds, so there's no syringe. It's just a vial of liquid gold for many MSers. This is the stuff that costs thousands of dollars, a ridiculous amount of money but for many people this is their treatment of choice. This is often a treatment people move to after trying and failing some of the other MS medications. I've had my two strikes already with Copaxone and Rebif.
I'm hoping that I can afford this medication monthly, that I can find an infusion center with flexible hours and days that work for me and with me, and lastly, I am hoping that this will be like a teeny tiny time machine that will bring me back to an earlier time in my MS when I was feeling much better than I am now. I am hoping for the miracle!
I read another blog, several actually if you look over at the side of this page you'll see the list, and the woman aka Brain Cheese who writes it (who is fabulous by the way!) has been talking a lot about the cost of Tysabri and her insurance. To read more of this, click http://brain-cheese.blogspot.com/2008/08/i-heart-capitalism.html . There appears to be a wide spread of costs for the medication and the infusion center charges.
I know about the infusion centers' charges' variances which really can vary quite a bit. The drill is the same no matter where you go; they have to follow the TOUCH protocol which consists of asking specific questions and handing you the same information each time, hooking you up to an IV to receive the Tysabri, and watching you on-and-off for the two hours that you're there to make sure there are no adverse reactions to the medication. Yet each infusion location can charge all sorts of amounts to your insurance.
My neurologist's office wants my infusion done there, which makes sense coming from a medical perspective and a financial one on their part. However, they only infuse Tysabri patients once a month. One day a month, never on Fridays because they only are open from Monday through Thursday, and you must adjust your life around that one day.
The Tysabri company which is Biogen Idec called me yesterday after receiving the paperwork from my neurologist's office. We talked through a lot of information and I asked about the chance of not being cleared for an infusion on that "one day a month" and then having to wait a whole other month to be infused on the neurologist's schedule.
I had to explain this several times to the representative I spoke with before she could understand what I was saying and she said that waiting another whole month isn't following the schedule. No duh! She suggested we look into alternative infusion facilities which we found through the Tysabri website and there are about 5 others located around the same area, which is about an hour from my apartment home. They're going to look into the availability of days and times and their costs and compare it to my neurologist's office.
That's great, but she also mentioned that I may have to switch doctors if I choose another facility. Why is all of this so darned difficult? I thought the whole point was for me to feel better and do better with my MS. Isn't this all supposed to be about what is best for me, not what is best for my doctor? Sometimes I wonder ...
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