The next step in the process of pump placement is a visit with the psychologist. It just so happens that while I was waiting to make that appointment (it took 20 days to get the call to even make the appointment), my family went to central California on a four day trip!
It was wonderful, and the timing could not have been better. Angels watched over us the whole time because in addition to perfect weather, there were ZERO major complications and the trip went smoothly. If you are interested in knowing more about the trip, please visit my personal blog "Greatly Blessed by Kate the Great" (found under my blog list on the left of the page) for pictures and stories. I haven't posted it yet and it will take me several days to get it done, so patience is key!
The reason I need to see the psychologist is to make sure I'm not crazy. Haha! No comments from the peanut gallery please. Seriously, he needs to determine that I do not have unrealistic expectations about what the pump is going to do for me. For example, a woman in her late 20's had been in a wheel chair for 5 years and expected that the pump would allow her to return to aerobic exercise. After much counseling, the clinic would not approve the placement of a pump for her, and they parted ways.
I see the psychologist this Thursday and the appointment is scheduled for an hour and a half. Wow. I cannot begin to imagine what we're going to talk about for that long. I hope we don't go all the way back to my time in high school. Maybe it's just me, but I think it's safe to say most people had issues back then. Teenage drama issues.
I'll let you know if he thinks I'm okay. That is, if I'm not immediately admitted to the psych floor...
Wednesday, March 31, 2010
Saturday, March 20, 2010
Feeling Better, Finally
I had no idea just how much the test dose was going to wreak havoc on my body! I went from massive drug level (oral dosing), to zero drug level (no oral dosing), to massive drug level (IT dose) followed by rapid zero drug level (metabolism), to slow reintroduction of oral dosing. My body was in a state of shock for about a day and a half as things got back to somewhat normalcy. I am not yet to pre-test dose levels and control of my spasticity and am wanting so bad to wake up tomorrow morning with everything done and over with!
I am most hopeful that surgery will be scheduled as early as mid-April, though that is being optomistic. After the pump is surgically implanted at Tacoma General Hospital (one overnight stay at best), I will be discharged and immediately admitted to Good Samaritan Hospital for 7-10 days where the pump experts will tweak my dose levels and perform aggressive physical therapy. After that, it should be just a matter of maintenance of both. Maintenance depending on my response to changes, but estimated to be monthly at the most, every 3-6 months once stabilized.
For now, I have completed my 2nd of three doses of IV steroids. These are high dose, pulsed infusions for the sole purpose of immuno-supression. The root cause of MS is that it is an automimmune disease; an overactive immune response, such that it attacks the neurologic system. Every three months I will be getting these infusions, as before I would only get them in response to a relapse. Ever had them? So not my idea of a good time.
The current drugs on the market for MS (doesn't treat it, just shows that over time cause LESS disability) are no longer viable options for me. I have tried many of them without much success. Rituximab is the next promising drug for me, a drug currently used to treat Rheumatoid Arthritis and Lymphomas. It is in phase III trials and is showing excellent results, but since it is not "off-label" for MS, insurance won't pay for it. My neurologist is asking the manufacturer on my behalf to donate it to me on humanitarian grounds.
There is much on my plate, but I am ever faithful that things indeed are looking up. I appreciate the support from friends, family, and now coworkers. It is a tough thing to share this stuff, so thank you all for the wonderful words of encouragement. I do feel myself "virtually" hugged by them!
I am most hopeful that surgery will be scheduled as early as mid-April, though that is being optomistic. After the pump is surgically implanted at Tacoma General Hospital (one overnight stay at best), I will be discharged and immediately admitted to Good Samaritan Hospital for 7-10 days where the pump experts will tweak my dose levels and perform aggressive physical therapy. After that, it should be just a matter of maintenance of both. Maintenance depending on my response to changes, but estimated to be monthly at the most, every 3-6 months once stabilized.
For now, I have completed my 2nd of three doses of IV steroids. These are high dose, pulsed infusions for the sole purpose of immuno-supression. The root cause of MS is that it is an automimmune disease; an overactive immune response, such that it attacks the neurologic system. Every three months I will be getting these infusions, as before I would only get them in response to a relapse. Ever had them? So not my idea of a good time.
The current drugs on the market for MS (doesn't treat it, just shows that over time cause LESS disability) are no longer viable options for me. I have tried many of them without much success. Rituximab is the next promising drug for me, a drug currently used to treat Rheumatoid Arthritis and Lymphomas. It is in phase III trials and is showing excellent results, but since it is not "off-label" for MS, insurance won't pay for it. My neurologist is asking the manufacturer on my behalf to donate it to me on humanitarian grounds.
There is much on my plate, but I am ever faithful that things indeed are looking up. I appreciate the support from friends, family, and now coworkers. It is a tough thing to share this stuff, so thank you all for the wonderful words of encouragement. I do feel myself "virtually" hugged by them!
Wednesday, March 17, 2010
Not for the weak of heart
The test dose was on Tuesday, and it was a doozy of a day. I'll spare you the gorey details, but the good news is I passed and am deemed a candidate for the pump! Now the challenge lies in scheduling, and the aggressive physical therapy that follows recovery and dose tweeking.
My husband thought he'd try to calm my nerves by video taping me first thing. This video was taken right after I was admitted.
My husband thought he'd try to calm my nerves by video taping me first thing. This video was taken right after I was admitted.
Saturday, March 13, 2010
So what is a "test dose"?
There are four steps to complete before someone can be approved for the surgery.
1.) referral from my neurologist -Check
2.) evaluation by my rehabilatation physician -Check
3.) assessment and final approval by the pump clinic -Check
4.) test dose of intrathecal Baclofen -March 16th
So what does a test dose of intrathecal Baclofen entail? Here are the nuts and bolts of the procedure:
Beginning at noon on Monday 3/15, I have to quit my oral dosing cold turkey. This part I am NOT looking forward to. Currently, I take my doses 5 hours apart during the day and by the fourth hour I'm wishing it was time for my next dose.
I check into Good Sam on Tuesday morning and am admitted straight to PACU. A pre-dose assessment by PT is done for a baseline of the severity of my spasticity. Then I am prepped in the OR for a lumbar puncture (spinal tap) which is when the Baclofen is injected into the intrathecal space of my spinal cord.
Funny story about my last LP 6 years ago...after 20 excrutiatingly painful minutes of repeated attempts to access my cerebral spinal fluid, the physician finally got the needle in place and the specimen was taken. When she was finished, she explained that the reason she had such a hard time was that given my petite frame, she didn't want to go too far and nick my spinal cord. I thanked her for her precaution and quipped "I guess that means I don't need to grow a back-bone"! Being of middle Eastern descent, she gave me a blank look. After explaining the expression, she chuckled.
Back to the test dose...I am then moved to a patient room where the same Physical Therapist will repeat her assessment hourly. This is to determine when the medication peaks and how long it takes to clear my system. The pump clinic RN and rehab physician will also be assessing me thoughout the day. I am expecting to be able to leave the hospital around 3 or 4 in the afternoon.
If I respond well to the test dose, I will be scheduled for surgery of the pump implantation at Tacoma General Hospital (where I work). I do not know how long to expect. So this is it! Please pray the test dose goes well!
1.) referral from my neurologist -Check
2.) evaluation by my rehabilatation physician -Check
3.) assessment and final approval by the pump clinic -Check
4.) test dose of intrathecal Baclofen -March 16th
So what does a test dose of intrathecal Baclofen entail? Here are the nuts and bolts of the procedure:
Beginning at noon on Monday 3/15, I have to quit my oral dosing cold turkey. This part I am NOT looking forward to. Currently, I take my doses 5 hours apart during the day and by the fourth hour I'm wishing it was time for my next dose.
I check into Good Sam on Tuesday morning and am admitted straight to PACU. A pre-dose assessment by PT is done for a baseline of the severity of my spasticity. Then I am prepped in the OR for a lumbar puncture (spinal tap) which is when the Baclofen is injected into the intrathecal space of my spinal cord.
Funny story about my last LP 6 years ago...after 20 excrutiatingly painful minutes of repeated attempts to access my cerebral spinal fluid, the physician finally got the needle in place and the specimen was taken. When she was finished, she explained that the reason she had such a hard time was that given my petite frame, she didn't want to go too far and nick my spinal cord. I thanked her for her precaution and quipped "I guess that means I don't need to grow a back-bone"! Being of middle Eastern descent, she gave me a blank look. After explaining the expression, she chuckled.
Back to the test dose...I am then moved to a patient room where the same Physical Therapist will repeat her assessment hourly. This is to determine when the medication peaks and how long it takes to clear my system. The pump clinic RN and rehab physician will also be assessing me thoughout the day. I am expecting to be able to leave the hospital around 3 or 4 in the afternoon.
If I respond well to the test dose, I will be scheduled for surgery of the pump implantation at Tacoma General Hospital (where I work). I do not know how long to expect. So this is it! Please pray the test dose goes well!
Thursday, March 11, 2010
Big News
I saw my neurologist on 3/9 as a regular "just checking in" appointment. The first item of business was to go over the paperwork and latest request from my employer to permit me to use my wheelchair at work. I don't want to use it to provide patient care, just to help me get around. After that he wrote me some more prescriptions to help me sleep, did the exam (I can do it in my sleep by now), set me up for more IV steroid infusions, and I was on my way. I'll see him again in June. Wow, a whole 3 months this time!
I went to the Rehabilitation Clinic at Good Sam on 3/10 for the next step in the evaluation of the placement of the Baclofen pump. I don't sleep well at night anyway, but this REALLY kept me up the night before! I was worried that for whatever reason, I wouldn't meet the criteria. The Physical Therapist checked me over and recommended the pump. I met with the Registered Nurse (who runs the show at the clinic). She took one look at the amount of my oral dose (I'm up to 140mg/day)and about fell out of her chair! After interviewing me further and reviewing my history, she wanted to make sure I understood what I was getting into. After I said "let's do it", she agreed!
Now for the big news...my test dose is this Tuesday! I am shocked! I thought I'd have to wait another 4 to 6 weeks for this next step, but the planets must have aligned because they could schedule it that quickly. I will be encountering nursing, PT, anesthesia, and my rehab physician. It truly is amazing that all four were available.
If the test dose goes well, I'll be scheduled for surgery. I'll write more about what the test dose procedure entails later. For now, the dishes in the sink are calling...
I went to the Rehabilitation Clinic at Good Sam on 3/10 for the next step in the evaluation of the placement of the Baclofen pump. I don't sleep well at night anyway, but this REALLY kept me up the night before! I was worried that for whatever reason, I wouldn't meet the criteria. The Physical Therapist checked me over and recommended the pump. I met with the Registered Nurse (who runs the show at the clinic). She took one look at the amount of my oral dose (I'm up to 140mg/day)and about fell out of her chair! After interviewing me further and reviewing my history, she wanted to make sure I understood what I was getting into. After I said "let's do it", she agreed!
Now for the big news...my test dose is this Tuesday! I am shocked! I thought I'd have to wait another 4 to 6 weeks for this next step, but the planets must have aligned because they could schedule it that quickly. I will be encountering nursing, PT, anesthesia, and my rehab physician. It truly is amazing that all four were available.
If the test dose goes well, I'll be scheduled for surgery. I'll write more about what the test dose procedure entails later. For now, the dishes in the sink are calling...
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