So this is how I came to my decision...
The doctor wanted to talk to me before we went forward with Tysabri. My parents decided to come for a visit the week of my appointment. My little girl Lucy had to have day surgery and my parents wanted to be there to help. My appointment with my doctor was Friday morning, and my mom said she wanted to attend. I wanted someone on my side because I was prepared to tell the doctor that there was no way that I was going to take Tysabri...
We get into the appointment, the doctor goes through what has happened in the last few weeks with patients taking Tysabri. He goes through all of the risks and all the other medications too.
My mom asks about the risk if I just do not take anything...the doc says that there is a 95% chancethat I will be permanently disabled from my MS if I do not take anything. My mom is speechless (which if anyone reading this knew my mom, we know Marsh is never speechless).
The doc wants me to go home and talk about it with family and friends. I was driving home and my mom started crying in the car. She said, "I just want to rock you in a rocking chair until all of this just goes away. I am so sorry that your life is so hard." That touched me in a way that I cannoit express in words. I feel like for the first time since I have known that I actually have MS, someone finally recognizes what I am going through. Sadly, my husband does not quite understand it. That is a struggle that happens to TONS of people that have diseases. I remember talking to my doctor soon after I started getting treatment for MS and my doctor told me that divorce is a complication of MS. Spouses often are not understanding, and on top of the stress of the disease, the financial burden of the treatments, the marriage suffers too. I can see this happening to my relationship with Terry. I am very frustrated with him because he is completely in deniall over the whole thing.
Terry likes to blame other things for the way thatI am feeling, he does not like to acknowledge tha multiple sclerosis is something that effects me everyday. If I am trying to nap, he acts like I am wasting the day away. (Fatigue is a horrible symptom of MS) If I forgot to pick up milk at the store, or make a deposit at the bank Terry sometimes acts like I have been irresponsible (Cognitive/memory issues are a big part of MS) If I complain that I cannot walk to the back of Target, so I will sit and wait in the car, Terry gets frustrated because he has to do it instead. My skin is numb from my chest to my toes, my legs feel like they are buzzing, I am tired beyond being a stay-at-home mom of 3 kids under the age of 4. I cannot go outside when it is hot because I lose my vision in my left-eye. I dread the heat- I wear a cooling vest so that I can go to a neighborhood picnic, or take the kids to the park. Life is a little tough, and there are days that I think I would like to have someone elses life. I do feel sorry for myself sometimes, because if I did not I think that no one else would feel sorry for me. I want someone (BESIDES MY WONDERFUL GIRLFRIENDS**STEPHANIE DEANDA**JILL LOSSER**AMBER GORE**JAMIE BUSHMAN**ANNE ROSS) I just want someone to acknowledge what is going on with me. I am feeling a little selfish- I think after the last 2 years of my sometimes rotten life I deserve to feel this way.
Back to my point- I am so happy that my mother heard form the doctor that things are not going to get better. In some way, it makes me feel more connected to her.
So I decided to go ahead with Tysabri, all the other meds offered pretty scary side-effects too. I am going to give it a shot and see what it does for me.
Yesterday was my first dose- 30 minutes of questions, 1 hour of infusion, 1 hour of observation. The rest of the night I rested as best I could....(I had to bring some bodily fluid samples to the lab for the doc***don't ask- that is another BLOG alltogether!!!)
So - I am feeling a little headachey, and super tired- like first trimester tired!! No I am not pregnant! Those tubes are tied! I just am adjusting to the medication.
So if anyone actually reads this- I am so sorry for the rambling, my tired head cannot sort my thoughts.
On a brighter note- my brother Jeff and his wife are coming for a visit from LA. They are bringing their 2 little girls JOSIE (3 years old) and NOLA (11 months). I have yet to meet NOLA and they have never met Cooper! So I cannot wait to see them.
Also we are set to close on our new house in 6 days. We are doing the final walkthrough with the builder on Friday- I am so thrilled to be in our new house.
I do not want to have to go through all of the moving stuff all over again.
Anyway, I am so excited to be starting a new chapter in our lives. It is time to focus on my family and not my MS!
be good
Showing posts with label Tysabri. Show all posts
Showing posts with label Tysabri. Show all posts
Wednesday, August 20, 2008
Friday, August 1, 2008
Okay, I am listening!
I thought that I was doing the right thing by taking Tysabri...in fact, yesterday, I received a phone call to set up my 1st Tysabri infusion (they wanted me to schedule for today, but I rescheduled it to Monday).
So as the days have gone by, I have thought a lot about what COULD happen...the risk of PML is like 1 in 1,000. In my history, if there is going to be a side effect, I will get it. I had to put those thoughts aside for a minute and listen to my doctor. His words were something along the lines of, " The risk is greater if you are on NO therapy, than if you are on Tysabri" Listening to those words really made me think a lot about the way I am handling my disease. I am thinking of the present moment...not looking at things down the road. I really need to stop worrying about what MS is doing to me right now, and think about what we are going to have on our hands 10-20 years from now.
The medications I have taken in the past, have all done "nothing". No effects are measurable from Copaxone. Rebif and Betaseron both gave me painful side effects. I think that I am willing to go back on those therapies - only because they do not have deadly side effects.
By the way- It was one year ago right now that the 35W bridge collapsed. I am sure that I will remember that day for the rest of my life. I was leaving HomeDepot in St Louis Park- and a young man than was collecting carts in the parking lot came running out to us and said- "Do not get on 35W- it just collapsed!" I just stood there - in a moment I heard ambulances and fire trucks and helicopters all racing to the scene. It was one of the worst days I have ever experienced living in Minneapolis. Driving home, listening to the radio, trying to call friends and family. It was one of the worst things when you are driving and look at a car next to you and the person is crying. I deove by a coffee shop in the neighborhood we lived in- and the people were all standing in the streets crying. No one could actually comprehend what had happened. I did not understand what had happened until 6 months later I actually drove to the site and took a look for myself. I had a really hard time doing it before that- I used to live just blocks from the bridge, that is the exit that you get on to go to the Aveda Institute. I lived on 5th Street and the exit that collapsed was the 4th street and University Avenue exit. Pretty intense. Bless all the people that were affected that fateful day. I took the time to sit and be still for the moments that were observed on the news. It stilll gives me chills.
Back to my lesser important rant---
Okay, this is what happened this morning. The phone rings and I see that it is Dr Calkwoods office. I answer, Brenda says, "Hello Kim Its Brenda! I wanted to see if you have gone in for your Tysabri dose today?"
me "No I changed the appointment, now I am going to take it on Monday."
Brenda" Okay Kim Hold the line, Dr. Calkwood would like to speak to you personally."
Me -thinking...is he calling to wish me luck? WTF? I am getting a little nervous now...
Brenda "Here is Dr. calkwood"
Calkwood" Kim I am so glad I caught you, did you already take your dose? Because I need you to NOT go to that appointment. Information that was released last night says that there are 2 new cases of patients that have PML. They are in Europe."
me "wow"
Calkwood "Canary in a coal mine, remember I told you about that at your last appointment?"
me "uh huh"
Calkwood"Well, until I have further evidence and research...I am pulling everyone off of their Tysabri"
me"Wow, I feel really lucky that you caught me just days before I was going to start Tysabri"
Calkwood"Well, 1 dose would not have hurt, but it also would not have helped either"
blahblahblah
So this is what I think-
I think that all of the waiting and the fighting the insurance company and the hospital...I think that that was the reason that I never got the chance to take Tysabri. I think that DEVINE INTERVENTION actually does happen- I think that because I waited so long and my doctor called me at home ans told me not to take the drug- I think that I will NEVER take it!
Further proof-
I went to sit on the couch to digest what had gone on with the Dr and the phone call. I turned on the tv and turned it to the NasDaq report...the report that was on was about Biogen Idec and how their stocks plummeted today because of these new PML cases. They went on to report that Biogen Idec makes Tysabri for Multiple Sclerosis patients who cannot tolerate other therapies (ME) and patients who have severe cases of MS.
If that is not proof enough- I do not know what is.
So WHOMEVER is looking out for me...Thank you. I am listening to whatever the universe is trying to tell me.
So as the days have gone by, I have thought a lot about what COULD happen...the risk of PML is like 1 in 1,000. In my history, if there is going to be a side effect, I will get it. I had to put those thoughts aside for a minute and listen to my doctor. His words were something along the lines of, " The risk is greater if you are on NO therapy, than if you are on Tysabri" Listening to those words really made me think a lot about the way I am handling my disease. I am thinking of the present moment...not looking at things down the road. I really need to stop worrying about what MS is doing to me right now, and think about what we are going to have on our hands 10-20 years from now.
The medications I have taken in the past, have all done "nothing". No effects are measurable from Copaxone. Rebif and Betaseron both gave me painful side effects. I think that I am willing to go back on those therapies - only because they do not have deadly side effects.
By the way- It was one year ago right now that the 35W bridge collapsed. I am sure that I will remember that day for the rest of my life. I was leaving HomeDepot in St Louis Park- and a young man than was collecting carts in the parking lot came running out to us and said- "Do not get on 35W- it just collapsed!" I just stood there - in a moment I heard ambulances and fire trucks and helicopters all racing to the scene. It was one of the worst days I have ever experienced living in Minneapolis. Driving home, listening to the radio, trying to call friends and family. It was one of the worst things when you are driving and look at a car next to you and the person is crying. I deove by a coffee shop in the neighborhood we lived in- and the people were all standing in the streets crying. No one could actually comprehend what had happened. I did not understand what had happened until 6 months later I actually drove to the site and took a look for myself. I had a really hard time doing it before that- I used to live just blocks from the bridge, that is the exit that you get on to go to the Aveda Institute. I lived on 5th Street and the exit that collapsed was the 4th street and University Avenue exit. Pretty intense. Bless all the people that were affected that fateful day. I took the time to sit and be still for the moments that were observed on the news. It stilll gives me chills.
Back to my lesser important rant---
Okay, this is what happened this morning. The phone rings and I see that it is Dr Calkwoods office. I answer, Brenda says, "Hello Kim Its Brenda! I wanted to see if you have gone in for your Tysabri dose today?"
me "No I changed the appointment, now I am going to take it on Monday."
Brenda" Okay Kim Hold the line, Dr. Calkwood would like to speak to you personally."
Me -thinking...is he calling to wish me luck? WTF? I am getting a little nervous now...
Brenda "Here is Dr. calkwood"
Calkwood" Kim I am so glad I caught you, did you already take your dose? Because I need you to NOT go to that appointment. Information that was released last night says that there are 2 new cases of patients that have PML. They are in Europe."
me "wow"
Calkwood "Canary in a coal mine, remember I told you about that at your last appointment?"
me "uh huh"
Calkwood"Well, until I have further evidence and research...I am pulling everyone off of their Tysabri"
me"Wow, I feel really lucky that you caught me just days before I was going to start Tysabri"
Calkwood"Well, 1 dose would not have hurt, but it also would not have helped either"
blahblahblah
So this is what I think-
I think that all of the waiting and the fighting the insurance company and the hospital...I think that that was the reason that I never got the chance to take Tysabri. I think that DEVINE INTERVENTION actually does happen- I think that because I waited so long and my doctor called me at home ans told me not to take the drug- I think that I will NEVER take it!
Further proof-
I went to sit on the couch to digest what had gone on with the Dr and the phone call. I turned on the tv and turned it to the NasDaq report...the report that was on was about Biogen Idec and how their stocks plummeted today because of these new PML cases. They went on to report that Biogen Idec makes Tysabri for Multiple Sclerosis patients who cannot tolerate other therapies (ME) and patients who have severe cases of MS.
If that is not proof enough- I do not know what is.
So WHOMEVER is looking out for me...Thank you. I am listening to whatever the universe is trying to tell me.
Sunday, June 22, 2008
Tysabri
Okay, by now most everyone knows that I have multiple sclerosis. It sucks. It really sucks. The worst part of the disease is finding a medication that will help me. I take a bunch of pills- to help with the pain, muscle spasms, to keep me awake, to help me to sleep, and to help with the depression. The medication to actually modify the course of the disease- THAT is the problem. There are 4 standard injectable therapies. I have taken 3 of them. All of them have done nothing! Everytime I go in after being on Copaxone, Rebif, or Betaseron...there are new lesions on my brain and spine. That essentially means that those medications have done absolutely nothing to help me.
This brings us to last week. Last week, I saw my brain doctor. He informs me it is time to start the drugs with the bigger problems. By bigger problems I mean- death, brain infections, liver failure, melanoma, leukemia, weakened heart muscles...need I go on? My choices include- CHEMOTHERAPY or TYSABRI. Chemo works to mess with your immune system enough to kinda trick your body. In MS your immune system is attacking itself. Chemo has been around for years and years- but you are only allowed 9 doses in a LIFETIME. So my doc thinks that this would be a bad option because I am so "young" and the problems involved with the chemo are not pretty - oh and it may make you sterile. Well, in my case that is not a problem- my little tubes are tied!
This is how we chose Tysabri. Tysabri has been on the market for 2 years. No one knows what will happen to you after being on it for more than 2 years. I guess that it had been on the market a while ago, but 3 people came down with PML, a deadly brain infection. The FDA pulled it off the market. Well, my doctor seems to beleive in this drug enough to prescribe it for me and some of his other "hard to treat" patients.
I have only known that I have MS for a year and a half. I am worried about what the permanent disabilities are going to be. I am walking with a cane, I have a handicap permit to park close to wherever I need to go. The hard thing is I do not look "sick". I am happy that my looks are not failing- but sometimes I wish I looked like I felt, so prople would understand what it is like to live like this.
I slept 8 hours last night...woke up fed the kids, and had to take a 4 hour nap becuase I could not keep my eyes open! Exhaustion is the biggest struggle lately. I want to do things but my body will not let me. I am embarassed by how tired I am all of the time. It is a hard thing to get used to.
The physical symptoms are easier to deal with - sometimes anyway.
Time to make some dinner. More to follow.
This brings us to last week. Last week, I saw my brain doctor. He informs me it is time to start the drugs with the bigger problems. By bigger problems I mean- death, brain infections, liver failure, melanoma, leukemia, weakened heart muscles...need I go on? My choices include- CHEMOTHERAPY or TYSABRI. Chemo works to mess with your immune system enough to kinda trick your body. In MS your immune system is attacking itself. Chemo has been around for years and years- but you are only allowed 9 doses in a LIFETIME. So my doc thinks that this would be a bad option because I am so "young" and the problems involved with the chemo are not pretty - oh and it may make you sterile. Well, in my case that is not a problem- my little tubes are tied!
This is how we chose Tysabri. Tysabri has been on the market for 2 years. No one knows what will happen to you after being on it for more than 2 years. I guess that it had been on the market a while ago, but 3 people came down with PML, a deadly brain infection. The FDA pulled it off the market. Well, my doctor seems to beleive in this drug enough to prescribe it for me and some of his other "hard to treat" patients.
I have only known that I have MS for a year and a half. I am worried about what the permanent disabilities are going to be. I am walking with a cane, I have a handicap permit to park close to wherever I need to go. The hard thing is I do not look "sick". I am happy that my looks are not failing- but sometimes I wish I looked like I felt, so prople would understand what it is like to live like this.
I slept 8 hours last night...woke up fed the kids, and had to take a 4 hour nap becuase I could not keep my eyes open! Exhaustion is the biggest struggle lately. I want to do things but my body will not let me. I am embarassed by how tired I am all of the time. It is a hard thing to get used to.
The physical symptoms are easier to deal with - sometimes anyway.
Time to make some dinner. More to follow.
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