How do I even begin to describe the recovery process? Maybe I wasn't paying attention, but I never heard anybody say how difficult these post-surgery days would be. Jo is in some intense pain. She is taking very strong pain killers, but even then, she is never anywhere near pain free.
On top of that, Anna has developed some sort of stomach virus and an ear infection. She is having trouble sleeping, she doesn't want to eat and what she does eat doesn't stay down for long. Emily has put in a request for combat pay and hazardous duty pay. She is now threatening to ask for disability pay due to the mental anguish she suffered when she had to leave Jo at home alone with her pain killers, while she took Anna to see the doctor.
I'll see what I can do to come up with some good news tomorrow.
Wednesday, November 15, 2006
Sunday, November 12, 2006
Back Home Again, Pharmacy in Tow
Jo was let out of the hospital today around 1pm. I know she was excited just to get home, take a shower and lay in her own bed. Just walking from room to room in our house is going to be great exercise. I'll bet tomorrow's lunch money that by next weekend, she will feel so good that she will be begging to go back in and have the right hip replaced sooner than later.
Other than the obvious pain associated with having your hip sliced open, Jo says the primary pain she still feels is her right shin. According to my chiropractor (who, by the way, is awesome if anybody in Denver needs a chiropractor), hip problems can lead to shin pain. I don't know how or why, but I do know that Jo's left shin is not bothering her any more now that she has a new left hip. Interesting, eh?
Emily spent this evening trying to get Jo's medications sorted out and organized. She is already feeling the strain of taking care of 2 instead of 1. Fortunately, I think the elder will regain her independence extremely fast - the younger is going to take some work. One of Emily's toughest tasks will be keeping track of the 40 or so pills per day that Jo is taking. Many of those are still connected to her Aplastic Anemia and the rest are primarily pain pills.
Other than the obvious pain associated with having your hip sliced open, Jo says the primary pain she still feels is her right shin. According to my chiropractor (who, by the way, is awesome if anybody in Denver needs a chiropractor), hip problems can lead to shin pain. I don't know how or why, but I do know that Jo's left shin is not bothering her any more now that she has a new left hip. Interesting, eh?
Emily spent this evening trying to get Jo's medications sorted out and organized. She is already feeling the strain of taking care of 2 instead of 1. Fortunately, I think the elder will regain her independence extremely fast - the younger is going to take some work. One of Emily's toughest tasks will be keeping track of the 40 or so pills per day that Jo is taking. Many of those are still connected to her Aplastic Anemia and the rest are primarily pain pills.
Saturday, November 11, 2006
Intense Physical Therapy, Followed By Complete Exhaustion
Emily, Anna and I went to see Jo this morning and she was doing great. She was energetic and upbeat. I was amazed at how well she was doing and I started to think she might come home sooner than I expected. We took Anna back home for her nap and I came back by myself later that afternoon. In the meantime, physical therapy had come by.
Evidently, the therapy people put Jo through some pretty tough paces. By the time I saw her again, she was completely worn out and fairly disoriented. The nurse said that Dr. Kelly has some pretty aggressive goals for Jo so that she can come home as soon as possible. By 7:30pm, she was sleeping pretty hard with the help of some pretty strong pain medication.
Jo, since you won't remember any of this, but I know you will eventually read the blog, I do want to tell you the funniest thing you said. You came out of the bathroom and asked me to get you a swimming suit out of your swimsuit drawer. For a couple of minutes I tried to figure out why you had brought a swimsuit to the hospital until it finally dawned on me that you must have thought you were at home.
By the way, a lot of people have asked how Jo's lifestyle will be affected by having artificial hips. Dr. Kelly did say that we should do less mountain climbing and more swimming in tropical island locations, we should do less skydiving and have more massages, we should run fewer marathons and possibly drink more margaritas. I told her the limits of my sacrificial spirit run very deep!
Evidently, the therapy people put Jo through some pretty tough paces. By the time I saw her again, she was completely worn out and fairly disoriented. The nurse said that Dr. Kelly has some pretty aggressive goals for Jo so that she can come home as soon as possible. By 7:30pm, she was sleeping pretty hard with the help of some pretty strong pain medication.
Jo, since you won't remember any of this, but I know you will eventually read the blog, I do want to tell you the funniest thing you said. You came out of the bathroom and asked me to get you a swimming suit out of your swimsuit drawer. For a couple of minutes I tried to figure out why you had brought a swimsuit to the hospital until it finally dawned on me that you must have thought you were at home.
By the way, a lot of people have asked how Jo's lifestyle will be affected by having artificial hips. Dr. Kelly did say that we should do less mountain climbing and more swimming in tropical island locations, we should do less skydiving and have more massages, we should run fewer marathons and possibly drink more margaritas. I told her the limits of my sacrificial spirit run very deep!
Friday, November 10, 2006
Enough Resting Already, Let's Get You Back on Your Feet
Physical and Occupational Therapy wasted no time getting Jo back on her feet today. She is walking with a walker, but she made several trips back and forth across the room, practicing various movements and proper technique for getting on and off the bed. I must admit, it was humbling to see one of the most graceful people I have ever known, now reduced to steps of no more than 4 to 6 inches in length.
For the most part, though, today was still a day of half finished sentences. Jo would start to say something and then she would fall asleep before she could finish. She would reach for her Starbuck's cup and then fall asleep with the cup only half way to her mouth. No matter how hard she fought it, her eyelids would get too heavy to hold up. 3 or 4 seconds later, she would wake back up and wonder how she had lost yet another battle with the sleep monster. Jo now has a much deeper understanding of my entire college experience.
For the most part, though, today was still a day of half finished sentences. Jo would start to say something and then she would fall asleep before she could finish. She would reach for her Starbuck's cup and then fall asleep with the cup only half way to her mouth. No matter how hard she fought it, her eyelids would get too heavy to hold up. 3 or 4 seconds later, she would wake back up and wonder how she had lost yet another battle with the sleep monster. Jo now has a much deeper understanding of my entire college experience.
Thursday, November 09, 2006
A New Left Hip
Jo went into surgery at about 11am this morning and Dr. Kelly told me to expect 2 .5 hours, but to give her 3 just to be safe. She ended up using the full 3 and then some. Jo's time in the recovery room was about double what we expected also. According to Dr. Kelly, the operation went very well, but it was a "struggle".
Dr. Kelly said that when she got the hip opened up, everything was inflamed and that made everything a bit more difficult. Walking around on broken body parts for 12 months really took a toll on the entire hip area. I can only imagine how much pain Jo has really been in the past 12 months based on Dr. Kelly's description of what she saw on the inside. Actually, the best any of us will every be able to do is imagine, because one thing I do know about Jo is that she will forever downplay it and say it usually wasn't all that bad.
Jo was pretty predictable throughout the evening. She would try to hold a conversation, but then she would fall asleep while she was talking. She said it reminded her of being in labor with Anna - not the painful part of labor, but the falling asleep between each contraction part.
Yesterday, Jo had an MRI on her knee, shin and ankle. She has had some pain in those parts of her legs. Hopefully the shin pain is associated with the hip problems (which can happen), but of course, we worry about necrosis showing up in the other joints. We should have some data from that test next week.
Dr. Kelly said that when she got the hip opened up, everything was inflamed and that made everything a bit more difficult. Walking around on broken body parts for 12 months really took a toll on the entire hip area. I can only imagine how much pain Jo has really been in the past 12 months based on Dr. Kelly's description of what she saw on the inside. Actually, the best any of us will every be able to do is imagine, because one thing I do know about Jo is that she will forever downplay it and say it usually wasn't all that bad.
Jo was pretty predictable throughout the evening. She would try to hold a conversation, but then she would fall asleep while she was talking. She said it reminded her of being in labor with Anna - not the painful part of labor, but the falling asleep between each contraction part.
Yesterday, Jo had an MRI on her knee, shin and ankle. She has had some pain in those parts of her legs. Hopefully the shin pain is associated with the hip problems (which can happen), but of course, we worry about necrosis showing up in the other joints. We should have some data from that test next week.
Monday, November 06, 2006
Dr. Emily
Anna's favorite part of every week is gong to "My Gym" where she sometimes plays the roll of a traffic cop, making all the little kids line up and go one by one into the ball pit. These hand motions will also come in very handy when she learns Jo's dance, "Don't Stop".
Just when I decided to end my blog procrastination, things have started to change fast enough that yesterday's news is already out of date. Jo will now get a red cell transfusion on Wednesday to get her ready for her surgery on Thursday.
The other big news is the ever-expanding duties of our wonderful nanny, Emily. Jo has been on coumadin to thin her blood for quite a while now, but she has had to stop taking it to prepare for surgery. However, in order to combat the risk of clotting due to the PNH problem, she has been switched to a medicine that must be given as a shot in the morning and another at night. That's where Emily comes in.
Emily was trained by Dr. Alvarez' staff this morning on how to adminster the shot and she is doing extremely well. According to Jo, the only part of the training that seems to have escaped Emily is the part about inserting the needle "quickly". Well, tomorrow is another day to further refine her technique.
Sunday, November 05, 2006
The Stars Begin to Align
Only 3 more days and a wake-up before Jo's surgery and it looks like any potential hurdles have been removed. This past Friday, United Healthcare and the Health One Hospital Network came to a resolution, which is a huge monkey off the shoulders of our doctors. We now know for sure that Jo will have her hip surgery at Presbyterian St. Luke's in downtown Denver, the hospital her Orthopedic Surgeon normally works out of. All of the contingency plans for using other hospitals can be tossed to aside!
Jo's surgery is schedule for 10am on Thursday morning and she should be recovering by noon. For anybody familiar with hip replacements, you know that this surgery is considered very easy. When the doctors talk about replacing a hip, the conversation doesn't sound much different than a conversation about changing a light bulb. The only thing that might make Jo's procedure a little tricky is her blood situation - and even that appears to be a non-issue.
There was a lot of talk about Jo getting transfusions in the week prior to surgery to get her counts up to where they need to be, but even that is not going to happen. Her platelets had gone up to 114,000, but they are now back down in the 90,000 range and her red blood cells, which still have the PNH problem, have come up high enough that she won't need any red cell transfusions before she goes in on Thursday. Of course, she will get whatever she needs once she is in the hospital, but not needing transfusions prior definitely gives us a nice feeling of independence.
Jo's surgery is schedule for 10am on Thursday morning and she should be recovering by noon. For anybody familiar with hip replacements, you know that this surgery is considered very easy. When the doctors talk about replacing a hip, the conversation doesn't sound much different than a conversation about changing a light bulb. The only thing that might make Jo's procedure a little tricky is her blood situation - and even that appears to be a non-issue.
There was a lot of talk about Jo getting transfusions in the week prior to surgery to get her counts up to where they need to be, but even that is not going to happen. Her platelets had gone up to 114,000, but they are now back down in the 90,000 range and her red blood cells, which still have the PNH problem, have come up high enough that she won't need any red cell transfusions before she goes in on Thursday. Of course, she will get whatever she needs once she is in the hospital, but not needing transfusions prior definitely gives us a nice feeling of independence.
Monday, October 23, 2006
A Date is Set for Surgery #1
Jo was actually supposed to have her first hip surgery last Thursday, but due to several factors, most notably the feud between United Healthcare and the Health One Hospital Network in Denver, things have been delayed. Jo's first hip surgery is now scheduled for November 9th. It's hard to believe that in barely over 2 weeks, the process or regaining mobility could begin.
Of course, Jo has the most amazing attitude you could ever imagine, and she would probably never admit the truth, but for the sake of accuracy, I will share with you how tough her hip problem has become. From a standing position, Jo can bend down toward her feet no more than about 45 degrees. Try putting your socks on while only bending 45 degrees. It cannot be done.
Jo uses a cane to get around the house and that helps a lot. When she goes outside of the house, she still uses her crutches, which come with their own hazards. Yesterday, we were at the Park Meadows Mall, taking Anna for a little walk. Jo's crutch slipped on the marble floor and Jo was instantly headed for the floor. Fortunately, before coming to a rest on the floor, she landed partially on our new nanny, Emily. We were all scared to death, but when it was over, Jo was okay - a little more sore than normal, but no pain that would indicate bone damage.
Some of the toughest things for Jo are getting in and out of the car, getting in and out of the bath tub and picking something up off the floor. Back in February, when we were at the NIH, they gave us a bunch of "tools" to help with daily activities and we are now becoming more and more dependent on those tools.
Jo's blood counts are very good and they are holding steady. She is still taking Cyclosporine, which is an anti-rejection drug normally given to transplant patients. She will not be completely off of the Cyclosporine until sometime around August of 2007. It's amazing how non-threatening Jo's life-threatening blood disorder seems compared to the problems she has with her hips.
Our nanny, Emily, came to live with us from England at the beginning of October and she and Anna are already best friends. Emily has been absolutely tremendous and we are extremely lucky to have been put in touch with her. Emily is a very good friend of Rachael McEnaney, one of the top line dance instructors in the world and a very good friend of Jo. Thank you Rachael for getting us in touch with Emily.
We are coming up on 2 full years under the care of Dr. Alvarez and to commemorate this anniversary, we have something very special in the works for him. Believe it or not, The Pussycat Dolls are working on a remake of one of the hit songs that will be dedicated to him on the two-year anniversary. I have personally volunteered my time to try to make it possible for them to come and sing to him in person. Stay tuned...
Of course, Jo has the most amazing attitude you could ever imagine, and she would probably never admit the truth, but for the sake of accuracy, I will share with you how tough her hip problem has become. From a standing position, Jo can bend down toward her feet no more than about 45 degrees. Try putting your socks on while only bending 45 degrees. It cannot be done.
Jo uses a cane to get around the house and that helps a lot. When she goes outside of the house, she still uses her crutches, which come with their own hazards. Yesterday, we were at the Park Meadows Mall, taking Anna for a little walk. Jo's crutch slipped on the marble floor and Jo was instantly headed for the floor. Fortunately, before coming to a rest on the floor, she landed partially on our new nanny, Emily. We were all scared to death, but when it was over, Jo was okay - a little more sore than normal, but no pain that would indicate bone damage.
Some of the toughest things for Jo are getting in and out of the car, getting in and out of the bath tub and picking something up off the floor. Back in February, when we were at the NIH, they gave us a bunch of "tools" to help with daily activities and we are now becoming more and more dependent on those tools.
Jo's blood counts are very good and they are holding steady. She is still taking Cyclosporine, which is an anti-rejection drug normally given to transplant patients. She will not be completely off of the Cyclosporine until sometime around August of 2007. It's amazing how non-threatening Jo's life-threatening blood disorder seems compared to the problems she has with her hips.
Our nanny, Emily, came to live with us from England at the beginning of October and she and Anna are already best friends. Emily has been absolutely tremendous and we are extremely lucky to have been put in touch with her. Emily is a very good friend of Rachael McEnaney, one of the top line dance instructors in the world and a very good friend of Jo. Thank you Rachael for getting us in touch with Emily.
We are coming up on 2 full years under the care of Dr. Alvarez and to commemorate this anniversary, we have something very special in the works for him. Believe it or not, The Pussycat Dolls are working on a remake of one of the hit songs that will be dedicated to him on the two-year anniversary. I have personally volunteered my time to try to make it possible for them to come and sing to him in person. Stay tuned...
Sunday, September 17, 2006
A Belated Goodbye Message to Mamaw
Yes, I am a delinquent blog poster. Jo's health has been pretty steady and there hasn't been much to write about. Her platelets went up over 100,000 for a couple of weeks and then they dropped down to 86,000 or so. For the most part, we are waiting to see if the new hip resurfacing technique is going to be an option or not. The hope is still to have one hip operated on before Christmas and the other after the first of the year.
I do have to say (a belated) thank you to Jo's mom, referred to as "Mamaw" by the grandchildren. The chill in the air today made me think that it wouldn't be a very good day for strolling. Jo's mom was here from April until the beginning of September and she took Anna strolling around the neighborhood multiple times per day, every day. Everybody in the entire neighborhood knows Anna pretty well after this summer.
I am not 100% sure that Mamaw knew exactly what she was getting into, but she handled it like a champ. Anna was pretty close to 20 lbs. by the time Mamaw came to Denver, and lifting a 20 lb. sack of potatoes a hundred times per day will wear you out. I know because on Sunday nights I was exhausted and all I could think about was getting to my office Monday morning so that I could get a little rest.
The days of carrying Anna all over the place are quickly diminishing. Anna is in love with her new walking skills and I am sure running is only a few weeks away. For now, she is trying to master going up and down some small steps.
Thanks for spending the summer with us Mamaw. You were a tremendous help and I know that Anna absolutely loved having you here!
One last cute story. Just a couple of minutes ago, two of the neighborhood girls (about 5 or 6 years old) came to the door and asked, "Can Anna come out and play?" This has happened 3 or 4 times per week all summer long. Kids are amazing. Age really doesn't mean much to them. To these girls, Anna is just another kid on the block.
I do have to say (a belated) thank you to Jo's mom, referred to as "Mamaw" by the grandchildren. The chill in the air today made me think that it wouldn't be a very good day for strolling. Jo's mom was here from April until the beginning of September and she took Anna strolling around the neighborhood multiple times per day, every day. Everybody in the entire neighborhood knows Anna pretty well after this summer.
I am not 100% sure that Mamaw knew exactly what she was getting into, but she handled it like a champ. Anna was pretty close to 20 lbs. by the time Mamaw came to Denver, and lifting a 20 lb. sack of potatoes a hundred times per day will wear you out. I know because on Sunday nights I was exhausted and all I could think about was getting to my office Monday morning so that I could get a little rest.
The days of carrying Anna all over the place are quickly diminishing. Anna is in love with her new walking skills and I am sure running is only a few weeks away. For now, she is trying to master going up and down some small steps.
Thanks for spending the summer with us Mamaw. You were a tremendous help and I know that Anna absolutely loved having you here!
One last cute story. Just a couple of minutes ago, two of the neighborhood girls (about 5 or 6 years old) came to the door and asked, "Can Anna come out and play?" This has happened 3 or 4 times per week all summer long. Kids are amazing. Age really doesn't mean much to them. To these girls, Anna is just another kid on the block.
Friday, September 01, 2006
Would you rather have The Luck of the Irish...or a little Polish Persistence?
First of all, Jo's health is holding steady. The big news is that for the first time in almost 2 years, Jo will only be getting her blood checked once per week instead of a minimum of twice per week Yes, Dr. Alvarez gave her his official blessing to cut back to weekly CBCs. Considering the amount of time a little trip to the Doctor's office actually takes, this is wonderful news for Jo!
Enough of that though. Let's get on to the juicy stuff! Last night Jo's mother, Rita, was informed by somebody in Texas that just recently, this person saw Colin Farrell being interviewed on some late-night talk show program and the host asked Colin about his first job. He mentioned that he learned how to line dance in Ireland from Jo Thompson and then he taught line dancing for about 8 months.
A search on Google revealed the following from March, 27, 2005:
COLIN FARRELL revisited his embarrassing past on comedienne Ellen Degeneres' chat show in America when he had to teach the host and three audience members linedancing moves.
The movie star used to teach country dancing in Ireland when he was a teenager, and Ellen insisted he gave a demonstration.
Embarrassed Farrell told her, "There was a craze for a year when I was 17.
"This bird came in from Texas and taught us all how to linedance and then she went back to Texas and we linedanced and went around Ireland teaching people how to linedance."
The Irishman was left red-faced when he tried to recall his skills.
He said, "This is mortifying... We've had enough. I'm dying here, man."
It makes you wonder, doesn't it? Mr. Farrell has achieved significant fame and fortune in his life, but does he know how close he was to one of the most valuable treasures ever found on this earth? Well, Mr. Farrell, enjoy your money and everything that comes with your life in the fast lane, but always remember...you met Jo Thompson first, but I married her!
Enough of that though. Let's get on to the juicy stuff! Last night Jo's mother, Rita, was informed by somebody in Texas that just recently, this person saw Colin Farrell being interviewed on some late-night talk show program and the host asked Colin about his first job. He mentioned that he learned how to line dance in Ireland from Jo Thompson and then he taught line dancing for about 8 months.
A search on Google revealed the following from March, 27, 2005:
COLIN FARRELL revisited his embarrassing past on comedienne Ellen Degeneres' chat show in America when he had to teach the host and three audience members linedancing moves.
The movie star used to teach country dancing in Ireland when he was a teenager, and Ellen insisted he gave a demonstration.
Embarrassed Farrell told her, "There was a craze for a year when I was 17.
"This bird came in from Texas and taught us all how to linedance and then she went back to Texas and we linedanced and went around Ireland teaching people how to linedance."
The Irishman was left red-faced when he tried to recall his skills.
He said, "This is mortifying... We've had enough. I'm dying here, man."
It makes you wonder, doesn't it? Mr. Farrell has achieved significant fame and fortune in his life, but does he know how close he was to one of the most valuable treasures ever found on this earth? Well, Mr. Farrell, enjoy your money and everything that comes with your life in the fast lane, but always remember...you met Jo Thompson first, but I married her!
Friday, August 25, 2006
What do you want first...the good news or the bad news???
Let's start with the good news. Last week, Jo's platelets hit 94,000 - an all time high! I was naked and ready to run down the streets of Highlands Ranch hootin' and hollerin', but Jo slammed the door shut just as Anna had gotten her diaper undone and was about to join me.
Yesterday, Jo talked to Dr. Young and he was very pleased with the results of her bone marrow tests. He said overall, Jo's bone marrow looks good. However (that usually signals the bad news, right?), her PNH problem has increased. Back in February, 30% of her red blood cells were defective due to the PNH clone issue. This time, 80% of her red blood cells showed the PNH problem.
Even though Jo's bone marrow is producing more red blood cells, the cells are bursting as soon as they enter the blood stream. When the cells burst, they leave "garbage" (i.e. cell membranes) floating around in her blood stream, which increases her chances of having blood clots. According to Dr. Young, the miracle drug (code name: eculizumab - Alexion Pharmaceutical) is supposed to be approved by the FDA within a year and it should prevent the red blood cells from bursting. In the meantime, until the drug is available, Jo will have to take Coumadin to thin her blood to prevent blood clots. When you think about that, it's kind of ironic - Jo's bone marrow wasn't producing platelets, which meant she would have trouble clotting and now she has to take a medication to prevent clotting. Hmmph?
Today, we saw Dr. Kelly (the orthopedic surgeon here in Denver) again. She has been waiting for us to get permission from Dr. Young to move forward on Jo's hips. Dr. Young didn't exactly say, "yes, go ahead", but he did say he understands Jo's situation and he feels she will be fine to go ahead. His hesitation is easy to understand. Hip surgery will put a good deal of stress on Jo's body. The way Jo sees it is that if Barry Manilow can do it, she can do it.
Dr. Kelly is getting trained in late September on how to do a new hip resurfacing surgery as compared to the existing total hip replacement surgery. She wants to wait until after her training to make any decisions so she can find out from the experts if Jo is a candidate for this new technique which would give her more strength and flexibility than the traditional total hip replacement. Dr. Kelly did agree that it is reasonable for us to expect to have one hip surgery complete before Christmas and the other hip done approximately 3 to 4 months later.
We also questioned Dr. Kelly on the pockets of necrosis that are forming in Jo's shoulders and her knees. She said that there are a lot of options for the shoulders and the knees, but (sort of the same as "however", eh?) nothing can be done until the hips are fixed. After that, things can be done to try to stop or reverse the damage to the other joints.
Yesterday, Jo talked to Dr. Young and he was very pleased with the results of her bone marrow tests. He said overall, Jo's bone marrow looks good. However (that usually signals the bad news, right?), her PNH problem has increased. Back in February, 30% of her red blood cells were defective due to the PNH clone issue. This time, 80% of her red blood cells showed the PNH problem.
Even though Jo's bone marrow is producing more red blood cells, the cells are bursting as soon as they enter the blood stream. When the cells burst, they leave "garbage" (i.e. cell membranes) floating around in her blood stream, which increases her chances of having blood clots. According to Dr. Young, the miracle drug (code name: eculizumab - Alexion Pharmaceutical) is supposed to be approved by the FDA within a year and it should prevent the red blood cells from bursting. In the meantime, until the drug is available, Jo will have to take Coumadin to thin her blood to prevent blood clots. When you think about that, it's kind of ironic - Jo's bone marrow wasn't producing platelets, which meant she would have trouble clotting and now she has to take a medication to prevent clotting. Hmmph?
Today, we saw Dr. Kelly (the orthopedic surgeon here in Denver) again. She has been waiting for us to get permission from Dr. Young to move forward on Jo's hips. Dr. Young didn't exactly say, "yes, go ahead", but he did say he understands Jo's situation and he feels she will be fine to go ahead. His hesitation is easy to understand. Hip surgery will put a good deal of stress on Jo's body. The way Jo sees it is that if Barry Manilow can do it, she can do it.
Dr. Kelly is getting trained in late September on how to do a new hip resurfacing surgery as compared to the existing total hip replacement surgery. She wants to wait until after her training to make any decisions so she can find out from the experts if Jo is a candidate for this new technique which would give her more strength and flexibility than the traditional total hip replacement. Dr. Kelly did agree that it is reasonable for us to expect to have one hip surgery complete before Christmas and the other hip done approximately 3 to 4 months later.
We also questioned Dr. Kelly on the pockets of necrosis that are forming in Jo's shoulders and her knees. She said that there are a lot of options for the shoulders and the knees, but (sort of the same as "however", eh?) nothing can be done until the hips are fixed. After that, things can be done to try to stop or reverse the damage to the other joints.
Friday, August 18, 2006
NIH - 6 Month Checkup
Earlier this week, Jo and I traveled to Bethesda, MD for her 6 month checkup Tuesday morning at the NIH. It's hard to believe it has been 6 months since we were there for her ATG treatment! The primary physicians were not in town, but we did get to see one of the attending fellows and Jo did have a bone marrow aspiration and biopsy. We should have the results by the end of next week.
The fellow, Dr. Aliu was a very interesting "fellow". He claims to have just gotten over malaria, but it wasn't that big of a deal to him. He says he has had malaria a hundred times. Dr. Aliu said that he was very pleased with all of Jo's blood counts, but only Dr. Young or Dr. Scheinberg had the authority to label Jo as "responding" to the ATG and give us the green light for Jo's hip surgeries. We are pretty sure they wouldn't have given us the permission we are looking for until after they had a chance to see the bone marrow results anyway.
So, we hope to get good news next week and get official permission to take the next steps. Speaking of next steps, Anna is just about ready to walk. She pushes her walker all over the house at break-neck speed and she will stand for several seconds without holding on to anything before plopping down on her homper (that's Texan for dupa - which is Polish for buttocks).
Monday, July 24, 2006
Does Anybody Remember Anthony Carter?
Anthony Carter was one of the greatest wide receivers ever to play football. He played for the Michigan Wolverines in college and then his best years in the NFL were spent with the Minnesota Vikings. He wore the number 81. Well, place your bets now for the Vikings to win the Super Bowl this year!!! Jo's platelets were 81,000 today. It's got to be an omen!
Yes, Jo's platelets hit 81,000 today - the highest they have been since she was diagnosed with Aplastic Anemia. This is tremendous news. Her white cell count was 3.6, a full point higher than last week. Her other counts were also very good, although most of them I cannot understand well enough myself to try to explain to anybody else.
The news is not as excellent on the hip replacement front. Dr. Kelly has asked Jo to consider holding off until at least October to schedule any sort of hip surgery. This is actually comforting news to Dr. Alvarez. When Jo told him that she was ready to move forward with her hip surgery and she asked for his blessing, he was hesitant. He said, "I feel my daughter is asking me if she can go to the prom." Being the "blood guy" he would like Jo to wait as long as possible for her counts to stabilize, but he also knows that it would be unrealistic to hope for his daughters to wait until they turn 21 to start dating.
Dr. Kelly also took an x-ray of Jo's shoulders and they are also showing small pockets of avascular necrosis. Jo's shoulders and her knees all ache, but don't present nearly the problems caused by the hips. The hips are the primary weight bearing joint and the compromised bone really takes a beating just from normal, every-day activities.
Anna is on the verge of walking, which is actually making things easier around the house for Jo. If need be, she can take Anna by the hands and walk her from one room to another. Our trip to the NIH is scheduled for August 15th and 16th, and Jo will have a bone marrow biopsy while we are there.
Yes, Jo's platelets hit 81,000 today - the highest they have been since she was diagnosed with Aplastic Anemia. This is tremendous news. Her white cell count was 3.6, a full point higher than last week. Her other counts were also very good, although most of them I cannot understand well enough myself to try to explain to anybody else.
The news is not as excellent on the hip replacement front. Dr. Kelly has asked Jo to consider holding off until at least October to schedule any sort of hip surgery. This is actually comforting news to Dr. Alvarez. When Jo told him that she was ready to move forward with her hip surgery and she asked for his blessing, he was hesitant. He said, "I feel my daughter is asking me if she can go to the prom." Being the "blood guy" he would like Jo to wait as long as possible for her counts to stabilize, but he also knows that it would be unrealistic to hope for his daughters to wait until they turn 21 to start dating.
Dr. Kelly also took an x-ray of Jo's shoulders and they are also showing small pockets of avascular necrosis. Jo's shoulders and her knees all ache, but don't present nearly the problems caused by the hips. The hips are the primary weight bearing joint and the compromised bone really takes a beating just from normal, every-day activities.
Anna is on the verge of walking, which is actually making things easier around the house for Jo. If need be, she can take Anna by the hands and walk her from one room to another. Our trip to the NIH is scheduled for August 15th and 16th, and Jo will have a bone marrow biopsy while we are there.
Sunday, July 02, 2006
Listen Up Anna, Just 230 Years Ago...
Anna is anxious to see fireworks for the first time, but I am not sure how she (or I for that matter) will be able to stay up late enough to see them. We may have to ask mom to take some video.
Jo's platelets are holding steady in the low 50s. This week, we hope to move our NIH appointment up to August 15th and then get a date on the caldendar for the first hip surgery. Assuming a 6 week recovery period for each hip, our goal remains to have Jo back to full mobility by Christmas!
Sunday, June 25, 2006
Anna Already Earning Her Keep - Is It Too Early to Say "Supermodel"?
So, many of you may not know that Anna has already had her first "paying" modeling job. At the tender young age of -1 week, Jo and Anna posed for an advertisement for St. Anthony's Hospital. That ad has just now shown up on a billboard in Denver. If you are in the neighborhood, you can take a look for yourself at the corner of Speer and Federal.On the Jo front, the NIH has said that we must wait until after Jo's 6 month checkup in August before we move forward on any type of hip surgery. So, for now, we wait.
Monday, June 19, 2006
The Little Girl Turns One and Mommy Gets a Hip Update
It has been an eventful week. Anna turned one over the weekend, and we had all of the neighborhood kids over for cake. Anna was more fascinated by all of her guests than she was by the cake. Our neighbors need to get busy making more babies so that Anna isn't always the youngest kid on the block. We actually have a few neighbors without kids, so I don't think Anna will be the youngest for long.
Last Thursday, Jo and I went to visit Dr. Cynthia Kelly. Dr. Kelly politely denied being the Colorado "expert", but she did admit that she does more work on patients with Avascular Necrosis than anybody else in Denver. I must admit that talking to her was much like talking to the doctors at the NIH. She was very precise with her thoughts and really left very little doubt in our minds as to what needed to be done.
The ball joints in Jo's hips have both "flattened" more in the past several months and there is a good chance that both hips will need to be replaced. Replacement is most probably the only choice on the right hip. Dr. Kelly mentioned that when she gets into the left hip and takes a look, it is possible that she would put a metal covering over the hip bone, which could buy several years before needing a total replacement. She said to think of this option the same way we might think about putting a cap on a tooth.
Both of Jo's knees also showed small pockets of Avascular Necrosis. Jo does have some discomfort in her knees that comes and goes, but nowhere near as bad as her hips. The next time we see Dr. Kelly, we will have to ask Dr. Kelly what she thinks will happen to Jo's knees.
Jo has sent an email off to Olga at the NIH, asking her to get official word from Dr. Young as to when we can pull the trigger on hip surgery. As soon as we hear from the NIH, I will let you all know.
Sunday, June 04, 2006
Holding Steady
Jo's platelets are holding steady at about 53,000. Due to an eventful weekend, she did have red cell transfusions last Friday to get her energy levels up. Jo's red cell counts and her hemoglobin counts have been hovering just high enough to not need transfusions, but low enough that her energy levels are just not where they would normally be.
The next big event on the medical calendar is to meet again with an orthopedic surgeon to evaluate Jo's hips and propose a plan of action. Once the plan is agreed upon, we can press the NIH for approval on a timeframe.
The next big event on the medical calendar is to meet again with an orthopedic surgeon to evaluate Jo's hips and propose a plan of action. Once the plan is agreed upon, we can press the NIH for approval on a timeframe.
Tuesday, May 23, 2006
NIH - 3 Month Checkup
This morning, Jo and I were in Bethesda, MD at the NIH for her 3 month checkup. Her platelets had dropped to 43,000 and I wasn't expecting good news.
We spent about 15 minutes with Dr. Young and he had nothing but positive things to say. His first words were, "You are clearly responding [to the ATG]." His second sentence was, "Your bone marrow is definitely producing blood cells." He explained to us that the patients that show this type of response by 3 months or 6 months are the patients that experience the best long-term results.
Dr. Young also explained that Jo could live for the rest of her life at the levels she is currently at. A level of 40,000 to 50,000 platelets is nowhere near normal, but it is a level that does not require transfusions. The only time she would need to be transfused is before any type of surgery, such as is required on her hips. He did say that Jo should start working with the orthopedic surgeons on a plan for her hips that could be implemented as soon as September!
Dr. Young went way over my head with a brief explanation of all the other things in Jo's blood that we are keeping an eye on. There is a lot of stuff happening that isn't considered life-threatening, but it must be watched. The bottom line is that he was extremely pleased with the progress so far and we'll just have to wait and see what happens between now and Jo's 6 month checkup.
The PNH Clones are still in Jo's blood and many of her red blood cells are bursting after they are created, but Dr. Young didn't feel this was a major issue right now. By year's end, a new "miracle drug" will be released that Dr. Young (and Dr. Childs) both believe will control the PNH problem.
We spent about 15 minutes with Dr. Young and he had nothing but positive things to say. His first words were, "You are clearly responding [to the ATG]." His second sentence was, "Your bone marrow is definitely producing blood cells." He explained to us that the patients that show this type of response by 3 months or 6 months are the patients that experience the best long-term results.
Dr. Young also explained that Jo could live for the rest of her life at the levels she is currently at. A level of 40,000 to 50,000 platelets is nowhere near normal, but it is a level that does not require transfusions. The only time she would need to be transfused is before any type of surgery, such as is required on her hips. He did say that Jo should start working with the orthopedic surgeons on a plan for her hips that could be implemented as soon as September!
Dr. Young went way over my head with a brief explanation of all the other things in Jo's blood that we are keeping an eye on. There is a lot of stuff happening that isn't considered life-threatening, but it must be watched. The bottom line is that he was extremely pleased with the progress so far and we'll just have to wait and see what happens between now and Jo's 6 month checkup.
The PNH Clones are still in Jo's blood and many of her red blood cells are bursting after they are created, but Dr. Young didn't feel this was a major issue right now. By year's end, a new "miracle drug" will be released that Dr. Young (and Dr. Childs) both believe will control the PNH problem.
Sunday, May 14, 2006
And, in the 11th Month, God said...
"Let there be mobility!" This past week, Anna started crawling pretty good. Fortunately, she is not too fast yet, but the amount of effort needed to keep up with her is growing exponentially.
Anna is having a little trouble sleeping. The past 2 days, when we put her down for her nap, she has fallen asleep sitting up in her crib. Her little head bobs up and down and sometimes bangs the side of the crib. However, being able to sleep sitting up is a good skill to develop for when she has to take some of those less-than-useful "core" requirements in college.
Jo's platelets are at 51,000. She really hasn't had any major changes to her counts in several weeks. In just over a week, Jo has her first checkup at the NIH. We are very excited to go back and touch base with the doctors and see what they think of Jo's improvement so far.
Anna is having a little trouble sleeping. The past 2 days, when we put her down for her nap, she has fallen asleep sitting up in her crib. Her little head bobs up and down and sometimes bangs the side of the crib. However, being able to sleep sitting up is a good skill to develop for when she has to take some of those less-than-useful "core" requirements in college.
Jo's platelets are at 51,000. She really hasn't had any major changes to her counts in several weeks. In just over a week, Jo has her first checkup at the NIH. We are very excited to go back and touch base with the doctors and see what they think of Jo's improvement so far.
Monday, May 01, 2006
April Showers Bring May Flowers
Jo, Anna and Mamaw Rita come back to Denver on Wednesday. Jo has only had her blood checked once in Texas and her platelets were at 47,000.
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