I have a little bit of bad news for all of you Internet Surfers. This will be your last chance to visit Jo's blog for free. Starting tomorrow, you will have to pay a toll every time you visit Jo's blog, just as you would every time you use your favorite toll road to get across town. Please write your congressman if you have any concerns.
In addition, we will now be charging for photographs with Jo at events and we will be selling "minutes" of conversation time that can be used very similar to cell phone minutes. However, these minutes will be used for face to face conversations, as well as phone conversations. Fees for written responses to email are still pending final approval.
Lastly, I (Mr. Give Until It Hurts) have volunteered to "sell" every inch of visible skin on my body for advertising space. Paul Giovino of Lithia Chrysler/Jeep has already reserved my forehead for his new 4-Door Jeep Ad.
Why the radical changes? The pricing for the PNH "Miracle Drug" has been released. We now understand why it is a miracle drug. It would be a miracle if any insurance company ever agreed to pay for it! The drug, called Soliris, costs $489,000 per year! I am ashamed that just two weeks ago, I was complaining about the cost of Starbucks at the Denver Airport.
I did make Jo double check that figure before I would believe it and according to the NIH, it is accurate. Of course, this changes things a "leetle" bit. Fortunately, Jo's PNH problem is small compared to some people with PNH. Jo has had two hemolysis "episodes" (that we know of) where her body destroyed red blood cells at a very rapid rate. We have talked to doctors who have patients that have episodes every week. This is another reason why Jo was probably never a candidate for Soliris last year before it was approved by the FDA.
The good news is that Jo's PNH problem isn't anywhere near as bad as it could be. The bad news is that we aren't going to start Soliris anytime soon. Don't forget that as demand goes up, prices normally come down, so if you happen to run by a drug store this weekend, pick up a bottle of Soliris to throw in your medicine cabinet. Actually, what if we all buy Soliris on Thursday of this week AND we all boycott gas stations on the same day. I'll bet if everybody that reads this blog emails a copy to at least five friends, we'll have the price of soliris down under $485,000 by the weekend!
Or then again, maybe not.
Tuesday, May 29, 2007
Thursday, May 24, 2007
"Put Your Head on My Shoulder"
Name that artist and the year that the song was released as a single. The first person to correctly log their answer as a comment will receive a gift certificate for one free hour of private dance instruction with Jo, redeemable soon.
Jo and I went to visit with Dr. Kelly yesterday and her hips both look tremendous! Her legs are almost exactly the same length, for which Dr. Kelly took full credit. I had to remind the good doctor that after Jo's 2nd surgery, Jo thought her legs were actually different lengths. It was I who suggested she jump up and down on the new hip to cram it down a little further into her leg bone, thus accomplishing a "self-adjustment".
Once the celebration settled down, Dr. Kelly decided to pull us both back to reality. She very politely asked Jo when she wanted to get going on the first shoulder operation. I think we were kind of focused on enjoying the summer and we had forgotten about the shoulders.
Both of Jo's shoulders have fairly large pockets of necrosis, which can clearly be seen on her x-rays. The good news is that both shoulders are still shaped appropriately and there appears to be minimal collapse. The bad news is that her left shoulder is cracked, which explains why her left shoulder has been bothering her. Dr. Kelly believes that this crack brings about a sense of urgency.
Dr. Kelly would like to do what is called a Core Decompression on each of Jo's shoulders, one at a time. This is a procedure where she would drill a hole into Jo's shoulder and then scrape out all of the diseased bone. New cells are then put into the diseased area to promote healthy growth. There is even some stem-cell research being done where stem-cells are harvested and then transplanted into the affected area. Dr. Kelly is researching the options right now.
Jo could be back in the operating room within 2 weeks. Fortunately, the shoulder surgeries will be child's play compared to the hip replacements. Based on Jo's incredibly fast recovery from the hips, she could possibly be an outpatient for the shoulders. She'll keep her arm in a sling for a week and then she'll need to limit her range of motion for another month.
Jo's blood counts are doing great. She had her counts checked today and her platelets were somewhere in the 150s. I'm still anxious to meet with Dr. Alvarez and see what he has to say about the new medication that is available for Jo's PNH problem.
Jo and I went to visit with Dr. Kelly yesterday and her hips both look tremendous! Her legs are almost exactly the same length, for which Dr. Kelly took full credit. I had to remind the good doctor that after Jo's 2nd surgery, Jo thought her legs were actually different lengths. It was I who suggested she jump up and down on the new hip to cram it down a little further into her leg bone, thus accomplishing a "self-adjustment".
Once the celebration settled down, Dr. Kelly decided to pull us both back to reality. She very politely asked Jo when she wanted to get going on the first shoulder operation. I think we were kind of focused on enjoying the summer and we had forgotten about the shoulders.
Both of Jo's shoulders have fairly large pockets of necrosis, which can clearly be seen on her x-rays. The good news is that both shoulders are still shaped appropriately and there appears to be minimal collapse. The bad news is that her left shoulder is cracked, which explains why her left shoulder has been bothering her. Dr. Kelly believes that this crack brings about a sense of urgency.
Dr. Kelly would like to do what is called a Core Decompression on each of Jo's shoulders, one at a time. This is a procedure where she would drill a hole into Jo's shoulder and then scrape out all of the diseased bone. New cells are then put into the diseased area to promote healthy growth. There is even some stem-cell research being done where stem-cells are harvested and then transplanted into the affected area. Dr. Kelly is researching the options right now.
Jo could be back in the operating room within 2 weeks. Fortunately, the shoulder surgeries will be child's play compared to the hip replacements. Based on Jo's incredibly fast recovery from the hips, she could possibly be an outpatient for the shoulders. She'll keep her arm in a sling for a week and then she'll need to limit her range of motion for another month.
Jo's blood counts are doing great. She had her counts checked today and her platelets were somewhere in the 150s. I'm still anxious to meet with Dr. Alvarez and see what he has to say about the new medication that is available for Jo's PNH problem.
Tuesday, May 15, 2007
Emotional Highs and Lows
Has anyone else noticed that air travel seems to be getting more and more cumbersome all the time? When was the last time you sat on an airplane with an empty seat beside you? What's up with Denver's airport not having a Starbucks? The last time I checked, we were in the 21st Century after all.
The other day I was flying to Texas to rejoin Jo and Anna and my flight left from DIA out of gate B81. Gate 81??? The highest numbered gate I had ever seen was about 51. How could there possibly be another 30 gates in that direction? Well, at the end of the terminal, there was a secret passageway around the corner that did lead to another 30 gates or so. However, the most exciting part was that right around the corner, there was a Starbucks!!! I knew it was going to be a great day...or so I thought.
As I took the last swig of my 20 oz Venti Latte, the United Airlines gate agent came over the PA system and said, "Houston passengers, please be advised that the lavatories on our aircraft are not working, so please prepare yourself as best as possible for the 2 hour flight." Just when I thought I had experienced everything the airlines could throw my way...
By the way, Jo is doing well. Recovery is slow, but steady. We anxiously await upcoming visits to Dr. Alvarez and Dr. Kelly to get what should be very good status updates.
The other day I was flying to Texas to rejoin Jo and Anna and my flight left from DIA out of gate B81. Gate 81??? The highest numbered gate I had ever seen was about 51. How could there possibly be another 30 gates in that direction? Well, at the end of the terminal, there was a secret passageway around the corner that did lead to another 30 gates or so. However, the most exciting part was that right around the corner, there was a Starbucks!!! I knew it was going to be a great day...or so I thought.
As I took the last swig of my 20 oz Venti Latte, the United Airlines gate agent came over the PA system and said, "Houston passengers, please be advised that the lavatories on our aircraft are not working, so please prepare yourself as best as possible for the 2 hour flight." Just when I thought I had experienced everything the airlines could throw my way...
By the way, Jo is doing well. Recovery is slow, but steady. We anxiously await upcoming visits to Dr. Alvarez and Dr. Kelly to get what should be very good status updates.
Friday, May 11, 2007
Daily Progress
Every day, Jo feels a little better. She is now telling me that she is between 80% and 85% of normal. Her headaches slowly went away over the course of about 4 weeks and her hips are really starting to feel good. After a year of hobbling around, she is having to concentrate pretty hard on walking "normal" again and it will still take several months for her to regain her strength, especially in her legs.
Jo has been in Texas for the past couple of weeks and that makes it tough to get any news regarding her blood counts. The TX doctors send all the results back to Dr. Alvarez and unless we make a call to Dr. Alvarez, we are kind of out of the loop. The way I see it, if Dr. Alvarez doesn't call us, everything must be okay.
Jo and Anna will be back in Denver next week. Dr. Alvarez should have information on Jo's ability to take the new PNH drug and Jo's 8-week post-op appointment with Dr. Kelly will be coming up. Currently, we are just enjoying our time away from the doctors and the hospitals.
Jo has been in Texas for the past couple of weeks and that makes it tough to get any news regarding her blood counts. The TX doctors send all the results back to Dr. Alvarez and unless we make a call to Dr. Alvarez, we are kind of out of the loop. The way I see it, if Dr. Alvarez doesn't call us, everything must be okay.
Jo and Anna will be back in Denver next week. Dr. Alvarez should have information on Jo's ability to take the new PNH drug and Jo's 8-week post-op appointment with Dr. Kelly will be coming up. Currently, we are just enjoying our time away from the doctors and the hospitals.
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