For the First Time in 21 Years...

Like she normally does, Jo has worked hard to transition from the heavy pain killers to Tylenol as quickly as possible. I can tell she is in a good amount of pain, but every time I ask she says, "It feels pretty good."

This was quite a bit bigger incision than any of Jo's previous shoulder surgeries so a longer recovery is only natural. I have not seen any sign of her abandoning her sling. We are approaching a week and for the previous shoulder surgeries, the sling was long gone by this time.

We have Meema for another 2 weeks here in Denver and then Jo and Anna will head on down to Texas for a little R&R with Memaw Rita. Anna is in 7th heaven because she and Meema have ice cream together every night.

Oh yeah, you probably want to know about the 21 year streak that has come to an end. This past weekend, Jo did something that she has not done in 21 years. Now that I think about it, why don't we pause and take a moment to hear from the viewing audience. If you think you can guess what Jo did this past weekend for the first time in 21 years, leave your guess as a comment on the blog. The winning guess (closest guess) will receive a set of hand-made gift cards from Jo this summer. If you didn't know this, Jo took several craft classes a few years back and she makes the most beautiful hand-made gift cards you have ever seen.

Kill Ratio Below 25%

It's not even 5:00pm and Jo has been cleared to go home. We should have time to stop at the Cherry Creek Grill on our way home for a quick order of Spinach Dip - exact same Spinach Dip we get at Houstons. If you think I'm kidding then you don't know Jo. She may nod off a few times while bringing a chip to her mouth, but that is not nearly as dangerous as when she drinks hot tea in the morning.

Our nurse's name is Cindy. This is at least the 3rd time that Cindy has taken care of Jo in the last 18 months. Today we found out that Cindy goes to the same church as us and she even goes at the same time. Last year she went on a cruise sponsored by the church with two of our very best friends, Gary and Kathy Weimer. Small world, eh?

You are probably anxiously awaiting my explanation of the "kill ratio". Jo's morphine pump will allow her to give herself a "shot of happiness" every 8 minutes. The machine keeps track of how many total shots she gets and it also tracks the total number of attempted shots. Jo successfully gave herself 25 shots of morphine. She pushed the button trying to get a shot 107 times.

Sadly, Jo's morphine pump was taken away from her this morning. They said something about the button being worn out. She is on oral pain killers. I have already checked the Internet and I have found nothing that suggests any problems that can occur when pain killers are mixed with spinach.

The Morning After

Jo had kind of a rough night. She has a morphine pump for her pain, but in the middle of the night she couldn't stay awake long enough to push the pump. She would wake up in tremendous pain and then fall asleep before she could push the pump. There are pros and cons to being a good sleeper.

Dr. Kelly mentioned that the shoulder pain could be even more than what Jo experienced with her hip replacements. We'll have to wait until Jo feels better and see if we can get her to give us a comparison.

The piece of bone that was transplanted into her shoulder was described as the shape of a mushroom with the top being about the size of a half dollar. The reason the surgery took so long is that the hole that the new bone goes into has to be created very slowly and carefully so that the new piece of bone fits as well as possible. The last thing you want to have happen is to put the new bone in the hole and then find out the hole was too big!

Jo is resting in her hospital room. She is expected to come home tomorrow night or Saturday morning.

Lucky Number 7

Last week, Jo got a call that a bone was available for her shoulder. We were given about a day to decide if she wanted to go forward with this bone or if she would pass. We decided to go for it and plans were put in motion. Yesterday, Meema flew to Denver to help with Anna and Jo went into surgery about 4:30pm today. Dr. Kelly says this surgery could take 4+ hours, so forgive me if I don't update the blog tonight.

Dr. Kelly will take a piece of bone out of Jo's shoulder and replace it with the donor bone that is about the size of a half-dollar. The new bone will be pinned in and over time it should give Jo's shoulder the shape needed to relieve her pain and also give her more range of motion.

Jo is expected to be in the hospital for 2 or 3 nights. Today we joined the hospital's Frequent Flyer Program. For $15 per year, Jo always gets a private room if one is available and I get $6 credit per day at the cafeteria. They do make a great Bacon Cheeseburger! Actually, I'm not sure that I have ever had a bad Bacon Cheeseburger.

NIH - The Rest of the Story

When Jo and I went to the NIH 2 weeks ago, there was actually a fair amount of concern stirred up when we talked about what has been going on the past year. Everybody was extremely concerned about the blood clot Jo had in her head last March shortly after her 2nd hip replacement. A blood clot in your head is very serious. It could lead to a stroke and irreversible brain damage. What surprised us a bit was that it seemed like ancient history to us.

Well, a blood clot is often an indicator used to by the NIH to make a decision to have a bone marrow transplant done, especially in a case like Jo’s where she has a perfect match donor. A bone marrow transplant is extremely difficult and has its own set of risks and jumping to transplant is never a decision made lightly. In Jo’s case, there is enough data to blame the clot on, that we have decided that we can continue down the path we are currently on and keep the bone marrow transplant as a backup plan.

Jo’s treatment for Aplastic Anemia is considered a tremendous success. Her bone marrow is producing good amounts of blood and most importantly, she does not require any blood transfusions. However, Jo also has the PNH problem where her red blood cells have a tendency to burst creating a bunch of cell garbage in her blood that puts her at high risk of clots. For that reason, she is on blood thinners at all times.

Blood thinners create their own problems. Jo has had to have several major surgeries and she will require a few more. When you have surgery, you cannot have thin blood. About 4 to 5 days before any surgery Jo stops taking Coumadin, her primary blood thinner. Coumadin stays in your system about 4 to 5 days, so she has to stop it in time for it to be completely out of her system before surgery. During that 5-day stretch, she gives herself shots of Lovonox, which only stays in her system about 12 hours. As long as her last shot is 12 hours or more before surgery, she can go into the operating room without any blood thinners in her system.

After surgery, Jo starts back on Coumadin, but it takes 5 days to build up. She again gives herself Lovonox shots for 5 days to “bridge” the gap until the Coumadin is built up. This “bridge” is extremely important. A total hip replace is a very significant surgery with a large incision and a lot of potential for bleeding. Jo’s surgeon, Dr. Kelly, had an extremely delicate job to do in managing Jo’s recovery because thin blood was necessary to prevent clots, but keeping Jo’s blood too thin could also cause problems with the healing process of Jo’s wound.

After checking as many records as possible, it appears that Jo was given 2 Lovonox shots in the hospital after that hip replacement. It is very possible that she went through a short period of time where her blood was not as thin as her hematologist would have liked it and this could be when the clot was formed. We’ll never know for sure, but the NIH doctors agree that there is enough data to suggest a reason for the clot. The other scenario would be to find that the clot happened even though Jo was fully “juiced-up” on blood thinners – Dr. Alvarez calls that “therapeutic”. I have no idea what that means. If that were the case, we would already be making plans for a bone marrow transplant.

Yes, Jo does have the PNH problem, but relative to other PNH patients she has it easy. She does not require any transfusions, she only had a handful of hemolytic episodes in the past year (lot’s of red cells bursting) and most of her hemolytic episodes have been fairly light. Therefore, after 2 weeks of discussions we have chosen to stay the course.

The other thing brought up after we talked about the blood clot was the possible use of Soliris – the “miracle drug” that was approved by the FDA last March. PNH patients that take Soliris do appear to experience blood clots less often than patients that do not take it. On the other hand, Soliris also has its issues. First, it is a probable commitment for life and there is no data yet on the long-term effects of taking it. Dr. Alvarez knows of one patient taking it here in the Denver area and after a couple of years now, that patient is beginning to have mixed results. Secondly, the drug costs $480,000 per year. Thirdly, most of the people (maybe all) have PNH problems more severe than Jo’s.

The question becomes this, “If Jo’s blood clot can be blamed on her level of blood thinners after her surgery, is her PNH condition bad enough to warrant the use of Soliris?” I will tell you that the opinions are not unanimous.

Considering Jo has felt tremendous the past 12 months, it seems odd to even have had this discussion over the last 2 weeks. It has made us realize how narrow the tight rope really is. We are very fortunate to have the medical advisors that we do have. Primarily because of how good Jo is doing, we have decided to push forward without any major changes. There are some minor changes and I’ll explain those later.

On a side note, have you ever seen the 1976 Movie, “The Boy in the Plastic Bubble”? John Travolta played the “Bubble Boy”. (I know that most of you are probably more familiar with the Bubble Boy episode from Seinfeld.) The bubble boy was the son of hematologist at the NIH and he developed Aplastic Anemia. The progress made with this disease over the past 30 years has been absolutely incredible. The really neat part is that we found out that Dr. Alvarez was a resident at the NIH 30 years ago and he was actually assigned now and then to take care of the Bubble Boy! Small world, eh?

Happy Easter!

Today we had a "big adventure" for Easter. Last night the weather turned cold and snow began to cover the grass. It appeared that our trip to Coors Amphitheater for our church's Easter service could be in jeopardy. We woke up this morning to clear blue skies and very cold temperatures. We decided to take the risk of severe frostbite and venture out.

We decided to only drive half way to church. For the second half of the journey we jumped on the train. This was Anna's first experience with the Denver Light Rail and she loved it! After a short walk, we found our seats among the other 13,000 people at Coors Amphitheater.

As the sun began to rise and the choir began to sing the entire place warmed up fast. The energy was incredible! Anna's favorite part was the end when hundreds of balloons were released into the sky to the strains of the Hallelujah Chorus.

After Church, we enjoyed a wonderful brunch with our good friends, Gary and Kathy Weimer and their family. Three dogs were present which kept Anna busy the entire afternoon. Overall, today was just one of those perfect days where you can't help but be greatful to be alive. Happy Easter everybody!

NIH 2-Year Checkup

Yesterday, Jo and I were in Bethesda, MD for her 2-Year checkup. When we were there 2 years ago, construction had just begun on a brand new welcome center. It is now almost complete. This was our first trip to Bethesda without crutches since Jo's initial consultation in November, 2004. We found ourselves walking places where we were not used to walking and doing things we were not used to doing. It took a while to realize that we had never before walked around Bethesda with this much mobility.

Jo had a bone marrow aspiration, which is always the highlight of the trip. We did get to talk to Dr. Young, Dr. Scheinberg and Dr. Childs and I found out some interesting history. According to Olga who runs the hematology clinic at the NIH, Dr. Young has been doing research on Aplastic Anemia for 27 years. If you remember, Jo had 4 doses of ATG when she received her treatment, which made her very sick. Back in the old days, patients used to receive 31 days of ATG!!! I cannot even imagine how sick they must have been. Dr. Young and Dr. Childs are going to Vietnam next week to help set up a bone marrow transplant clinic of some sort.

As of today, Jo has officially stopped her Cyclosporin, the immunosuppressant drug she has been taking for the last 2+ years. She will be monitored closely for the next couple of weeks to make sure that she does not experience any sort of relapse after stopping the Cyclosporin.

Van Thompson 9/11/1928 - 3/4/2008

This will probably be the hardest blog I have written yet. Sadly, Jo’s Father Van Thompson, Sr. passed away unexpectedly on Tuesday, March 4. We were in Texas for the funeral last weekend. Jo and Anna were able to stay until today.

I was blessed to have known Van for 14 years and grew to love and respect him greatly. He was a graceful man in many ways. Whether it was rounding up his herds of cattle, playing with his grandchildren, or dancing with his wife of 47 years, Rita, he was a gentleman in the true sense of the word. He was the real deal.

Jo told me she remembered that her "Daddy" was the person who first taught her to dance. At about age 5 she would stand on top of his feet and hold his hands as he taught her to do a waltz box. He obviously did a great job! Van lived a full life of almost 80 years and touched many people’s lives along the way. He will truly be missed. Please send out your prayers for the entire Thompson family as they remember a great husband, father and grandfather.

Jo and I will travel to the NIH tomorrow for her annual bone marrow check up. We are expecting good news and are looking forward to being able to taper Jo's medications. For those of you keeping track, we are now in month 25 of Jo's 18 month taper. Of course, we are also looking forward to our favorite meal of Spinach Dip and Grilled Chicken Salad at Houston's Restaurant which is right down the street from the NIH.

The Prospect Bone Fails Inspection

The bone that was hopefully going to allow Jo to have surgery later this week has failed inspection. Several tests were run to determine if it would be an appropriate bone for Jo's shoulder and for some reason it will not work. Jo and I are scheduled to do her annual visit to the NIH on March 18th, so the shoulder surgery will be put off until at least the end of March.

Throw Me a Bone

Jo got a call from Dr. Kelly's office yesterday letting us know that a bone has been located for her left shoulder partial bone transplant. We will get confirmation on Monday whether it's a "clean" bone that passes all the tests and if so, they will do surgery next Friday the 29th. I hope there isn't anything superstitious about having surgery on February 29th!

A New Plan

Earlier this year, Jo was given some news that we had kind of hoped would somehow resolve itself. Her left shoulder continues to hurt and we have known for a while that it had not healed just quite right. Jo was scheduled for knee surgery in early April, but that surgery has now been put on the back burner.

Jo's next surgery is going to be another surgery on her left shoulder - the third surgery for this shoulder. Dr. Kelly is going to take a piece of bone from the shoulder of a donor (no volunteers please - I think the donor has to be dead) and pin that piece of shoulder into Jo's existing shoulder. Over time this piece of new shoulder should grow together with her existing bone and prevent any further damage to the cartilage.

The ball of Jo's shoulder has collapsed slightly and it is rubbing against the cartilage causing pain and limited range of motion. Dr. Kelly says that there is a 90% chance that the bone transplant will take care of the pain and give Jo back her range of motion.

We are now on a waiting list for a bone donor. Once a match is made, Jo will have to have surgery within about 4 weeks. The recovery is expected to take a little longer than the previous shoulder surgeries with Jo being in a sling for 8 to 12 weeks.

The Light at the End of the Tunnel!

Jo saw Dr. Kelly today and she received the stamp of approval to fly to Texas tomorrow for the Holidays. She needs to be on crutches a few more weeks, but her knee is coming along perfectly!

More importantly, Jo asked Dr. Kelly to x-ray her ankles and her elbows and it appears that no surgery will be necessary. All four joints looked great! She isn't 100% happy with Jo's left shoulder, though - the one that has already been operated on twice. We may need to revisit that shoulder again in the future.

Overall, this is the best news we have had in a long, long time. The idea of maybe being close to finish line should make the next knee surgery a lot easier.

By the way, Jo's platelets are up to 190,000! That's well over the bottom end of normal - 150,000. We are scheduled to go back the NIH in March for Jo's 2nd annual checkup. She is now in month 22 of her 18 month protocol for treatment of her Aplastic Anemia. Yes, I typed that correctly. The math doesn't quite work, does it?

Deja Vu

Wow, the past couple of days have really brought back some memories that actually seem like years ago! Jo's knee surgery has definitely been more similar to her hip surgeries than her shoulder surgeries. There is no shortage of Percoset in the house!

Jo took her bandage off yesterday and she was able to shower today. Her knee is very swollen. She has had a tough time sleeping, but today she is starting to feel a bit better. I seem to remember Dr. Kelly saying that they went into her knee in 5 places and from the looks of it, that is very possible.

In some ways, this is the toughest recovery yet because Jo is not allowed to put weight on her knee. She was using crutches, but today we got out the walker. When she had her hips done, she was able to put weight on her hips very quickly and she walked with both feet. With the knee, she only puts weight on her one good foot. On the bright side, the incisions are considerably smaller than the hips, so that part of the healing process is expected to be much quicker.

On a Holiday note, you should hear Anna sing Jingle Bells. Talk about precious! I'll ask Meema to try to get a good video for the blog.

Do You Remember "Groudhog Day"?

We are hoping to schedule Jo's next knee surgery for February 2nd, Groundhog Day. Do you remember the Bill Murray movie? Maybe some you remember Andie MacDowell more than you do Bill Murray? It sometimes feels like we are living the same day over and over again.

Jo's surgery had a slight weather delay. We left the house at 5:45am and snow was falling. Anna was in her Christmas dress ready to take a picture with Santa at school today. Jo and I felt a bit like reindeer with Baby Santa perched in her seat in the back. Everybody at the hospital was talking about how long it took to get to work. Dr. Kelly seemed a little flustered from the 3 to 5 mph average commute speed.

Jo did see her shadow and we are expecting a very short winter...I mean the surgery went as expected. Dr. Kelly says her cartilage looks great and she did inject some stem cells into one area of necrosis. The knee is a more complicated joint than the hip or the shoulder and getting to certain areas would require doing damage to other areas.

Okay, the truth is that I was pretty tired this morning and I didn't understand some of the things Dr. Kelly told me and what I did understand, I have already forgotten. Jo will have a follow-up with Dr. Kelly within the next 10 days and I'll make sure that better notes are taken!

For now, just think of a football player on the sidelines with his knee wrapped in ice. That's pretty much what we have going on here today.

On Track for Wednesday

Anna has now finished her third Thanksgiving weekend, but this one was special because she took on many of the cooking duties. She seemed to be inspired by her new hat!

We are on track for an early morning show-time with Dr. Kelly on Wednesday morning for Jo's first knee surgery. We are hoping that the knees are similar to the shoulders and Jo is allowed to come home without staying overnight.

Our plan is to get Jo through two weeks in Denver and then send her and Anna down to Texas through Christmas and New Year's. Right now, Jo is being told that she will need to be on crutches for 4 to 6 weeks, but she was also expected to be on pain medication for more than 24 hours after each shoulder...

Shoulder Progress

Jo's shoulder is coming along nicely. The pain is slowly going away and she says that her range of motion is up to about 75% of normal. She went Salsa dancing with the girls two nights ago and that was a good test. She was able to get through the night pretty good. There are a lot of Salsa moves that take both hands over your head, so she definitely put her shoulder through some paces.

Jo's first knee surgery has tentatively been set for Wednesday, November 28th.

Happy Halloween!

Anna has been waiting for weeks and Halloween is finally here! She was sleeping hard last night and I had to go back into her room to put her pajamas back on. I asked her, "What day is tomorrow?" She was so tired she could barely get the words out, but she replied, "Quack Quack."

Jo had her follow-up appointment with Dr. Bazaz on Monday and he was pleased. He pushed her arm in all directions and she responded with multiple shreaks of pain. He seemed to think that meant she was right on schedule. Sometimes it is hard to keep in mind that the surgery was only a week ago. Jo came home from the hospital at noon on the day of her surgery and she was on pain medication for only one night. Dr. Bazaz expects her to see significant range of motion improvement within a couple of weeks.

Jo scheduled her first knee surgery for early December. Whether or not that happens will all depend on how well her shoulder does over the next few weeks. Dr. Bazaz will have to give her the "okay" to go ahead on the first knee. She will be on crutches after her knee surgery and everybody wants to make sure her shoulder can handle it.

P/SL - Take 5

In the past month or so, Jo's left shoulder has been our primary focus. She has had a limited range of motion and some fairly significant pain. The MRI didn't show anything conclusive, so Dr. Kelly referred Jo to Dr. Raj Bazaz and this morning, Jo just completed her first arthroscopic surgery (at P/SL - Presbyterian/St. Luke's Hospital).

Dr. Bazaz just showed me the pictures from the inside of Jo's shoulder and they were amazing! He showed me Jo's biceps tendon, her rotator cuff, the cartilage and a bunch of other stuff that I can't remember. The amazing part is how clear everything is on the pictures.

It turns out that the biceps tendon and the rotator cuff look perfect and the cartilage really looks pretty good. There was no exposed bone and he didn't need to "shave" back any bone. The offender appears to be what Dr. Bazaz called a classic "frozen shoulder".

Many of the pictures showed very red, inflamed tissue. Dr. Bazaz kept referring to it as "angry" tissue that all needed to be cleaned out. Of course, I had to ask how it gets "cleaned" out. He said it is actually more like a little BBQ action. He uses a heat probe to "cook" the tissue. His analogy was that the really rare parts need to be cooked down to about a medium to medium-well state.

Since Jo was under anesthesia, Dr. Bazaz was also able to really take Jo's shoulder through a full range of motion. Due to the pain, there is no way to do this in a conscious state. By moving the shoulder through the full range of motion, he is able to "break up" the pieces and parts that have been "locked down" due to the inflammation.

Overall, Dr. Bazaz felt that what he found was definitely on the low end of severity compared to all of the possible things that could have been causing the pain. When she gets out of the recovery room, she will be in a sling, but he said she can get rid of that as soon as she wants and he will not ask her to limit the use of the shoulder at all. He said that it will only take a couple of weeks to know if what he did today relieves the pain and brings back a significant range of motion.

As for Jo's knees, Jo will need to have surgery on each knee. She does have pockets of necrosis and they need to be fixed. Fortunately, the necrosis is in areas that are not at high risk of further injury, but Dr. Kelly said she would not want Jo to go more than about 6 months before having that necrosis addressed.

We do not know when Jo will have her knee surgeries. Dr. Kelly said that she will need to use crutches for several weeks after each surgery and that will put stress on her shoulder, so we kind of need to wait until Jo's shoulder is fairly well healed.

Follow-Up With Dr. Kelly

Jo saw Dr. Kelly today and she came home with a report card of straight "A"s. Dr. Kelly is extremely pleased with how the right shoulder has turned out. She also said there is a good chance that Jo's knees will not need surgery. The x-rays do shows small pockets of necrosis in her knees, but it is in an area that does not bear weight, and therefore, is not at much risk of further injury.

Next week Jo will get an MRI on her left shoulder and her left knee. The MRI will do a much better job than the x-ray at identifying any necrosis in her knee, so a final decision on the knees has been put off for a bit. Jo requested the MRI on her left shoulder because of the lingering pain. Overall, Dr. Kelly's thoughts were extremely uplifting.

For anybody that really remembers the details of Jo's visit to the NIH, her protocol included taking an anti-rejection drug called Cyclosporin for 18 months after her treatment and her dosages were supposed to be tapered down to nothing over the 18 month period. We are actually 19 months post-treatment and Jo is still taking Cyclosporin, but her dosages are very small. It shouldn't be long and that part of the journey will be complete. If you could see the size of these "horse-pills", you would know that they will not be missed.

I do want to shout out to my Uncle Howard and my Uncle Lenny in Minnesota. Both of them recently spent time in the hospital. Lenny's stay was pretty quick and Howard's stay was pretty serious. Jo and I know from experience that no amount of time in the hospital is much fun. We are very happy that you are both back in the comfort of your own homes. Please know that our thoughts and prayers are with you.

The Easiest Recovery Yet

Two nights ago, I asked Jo how her shoulder felt. She did a big "roundhouse" 360 and she said, "It feels great!" I was actually a little shocked. I think it may be just a bit early to be doing cartwheels on that new shoulder.

Yesterday, Jo mentioned that her surgical shoulder already feels better than her left shoulder that was done in June. On Friday, Jo will go to see Dr. Kelly for a follow-up visit and there may be more discussion about the left shoulder than there will be about the most recent operation. My guess is that the left shoulder is just going to take make time because of the crack that has to heal.

Can you believe that all of this started almost 3 years ago? Back then, Popcorn Lung wasn't a health threat, we still gave Brittney Spears a chance to make it as a mom, and I don't think YouTube even existed. Well, it does now. Jo has had to take a couple of crash courses to catch back up with modern technology and she has gotten straight "A"s. To check out Jo's latest dance choreography, click on the link below:

Jo's Dances on YouTube

A Refurbished Right Shoulder

Yesterday, Jo was first on the surgery docket at 8:30am. By noon she was out of the recovery room and up on the 6th floor, resting peacefully with her morphine pump. I really thought there might be a chance of her going home the same day, but about 8pm, I gave up. She said something even funnier than the swimsuit comment from her first hip surgery, and I tried to make a mental note, but I just can't remember.

Of all of Jo's surgeries, this may have been the toughest from a pre-op perspective. So far, every surgery has relieved some source of pain. This time, there was no pain. We even joked with Dr. Kelly in the pre-op room about maybe doing one more quick x-ray to make sure Jo's shoulder really did need surgery. Even though there was no pain right now, with dead bone in the shoulder, the surgery had to be done.

On the bright side, this surgery has definitely been the easiest from a post-op perspective. Jo said today that she can already tell that this shoulder feels way better than her left shoulder felt at this time. If you remember, her left shoulder had a crack in it and that crack is still not fully healed.

Jo stopped her pain medication this morning, less than 24 hours after her surgery and switched over to Tylenol. She says she may take some percocet tonight to make sure that she sleeps well. I would hate for her to feel alone, so I may do the very same thing!

Again, two thumbs up for the entire Presbyterian/St. Luke's experience. Everybody still treats me like it is our first trip there, but I know my way around pretty good. The registration nurse is the only that really remembers us. She gave Jo a big hug, asked her how Anna was doing and then told her that we really needed to quit meeting like this.

Surgery Gets Delayed

Due to a minor sore throat and some other "cold" symptoms, Dr. Alvarez recommended that Jo push tomorrow's shoulder surgery out another week. We are now scheduled for Thursday, September 13th. With this weekend being opening weekend of the NFL season, this short delay is possibly a blessing in disguise!

Jo's blood counts are a little off due to her cold, but for the most part they have been pretty good. Her platelets have been in the 150 range which is the bottom end of normal and her red blood cell measurements have been holding just below the bottom end of normal, but overall not too bad. Dr. Alvarez has sent a blood sample out to have Jo's PNH issue measured. Hopefully, we'll get results from those tests next week.

Jo Returns to Teaching

The event was only 36 hours ago, but already I am way behind on reporting the big news. Yesterday, Jo made her first real appearance on the dance floor as a teacher in about 2 years. Yes, she has emceed a couple of events and she has even taught a few dances with the help of a "demonstrator", but yesterday she was back on the dance floor as if she had never left. Don't forget that less than 1 year ago, Jo could not put her own shoes and socks on.

This event was put on by two of our very best friends, Scott and AJ Herbert of Colorado Springs (http://home.earthlink.net/~theherberts), who also brought in Joanne Brady from the East Coast. I can remember stories about Joanne for as long as I've known Jo. I can't think of anybody better to help Jo back onto the floor.

Scott and AJ always put on first-class events and they always know how to make sure Jo receives the care and attention she needs. (I must say that they also take very good care of me!) I do want to send out a very gracious "thank you" to Scott and AJ and also all of our other Colorado dance friends and colleagues. Jo is not quite "back" yet, but the rehabilitation process has begun and everybody in Colorado has been tremendous with their understanding and their support.

Over the next year or so, Jo will participate in more Colorado events to work on building her stamina and "testing" her physical abilities. Jo still has another shoulder surgery later this week and then we need to sit down and talk to her orthopaedic surgeon and see just how everything looks. I'll have more on that in the next couple of days, but today I just want to focus on how good it was to see her back on the floor.

So, you may be wondering when Jo will make her way outside of Colorado again. That is tough to say. She still has some physical challenges ahead and then there is Anna. Having a 2-year old is really cool and missing even a single weekend never sounds like fun.

The Dog Days of Summer

This Friday, Jo has a follow-up appointment with Dr. Kelly. Her surgically repaired shoulder is still hurting some and it will be good to get Dr. Kelly's thoughts. We will also confirm that we are still on track to have the other shoulder surgery done on September 5th.

Day-to-day life is really pretty normal. Two weeks ago, Jo started back to Jazzercise, which was a huge milestone! Other than "babying" her left shoulder a bit, she lifts anything she wants to lift and does anything she wants to do. Anna has started a pre-school/day-care 3 day per week program, so Jo is trying to catch up on a lot of lost time from the past 30 months or so. In only 3 days of school, Anna has already learned how to say "stop it" and "mine".

Baseball, Hot Dogs and Apple Pie...

With the 4th of July just around the corner, it is time for us to say farewell to Memaw Rita for the third summer in row. Jo's mom has been with us for a little over 6 weeks and she has been a tremendous help getting us through Jo's first shoulder surgery. Thank you Memaw for all you have done for us!

Speaking of summer, the 4th of July and Baseball (The Great American Pastime), how about those Yankees? At 3 games under .500, this could be the worst start in Yankee Town in recent memory. Jo actually received a call from the Bronx Bombers this week. They heard that her shoulder was feeling so good, they were hoping she would consider pitching (left handed) in their starting rotation. Ultimately, Jo's decision came down to this...

Roger Clemens - $22M
Jo's Offer - $10M
Being a Mom - Priceless

Believe it or not, I voted that she take the job.

Jo has about 95% of her range of motion back in her left shoulder. She does still have a bit of soreness and her incision is a little tender, but overall, the shoulder recovery continues to be incredibly easy.

We have made an appointment for Jo's right shoulder surgery on September 5th which will be here quicker than we can imagine. She could have done it sooner, but to be honest, we chose to take the summer off!

Child's Play

I know that I have a duty to entertain my reading audience, but this shoulder surgery has given me absolutely no material to write about. I asked Jo to give me the real scoop on the pain and she replied, "It's no worse than a paper cut." If the next shoulder is this easy, I may have to take a sabbatical from the blog.

Jo spent one night in the hospital and she was home by noon the next day. She took pain killers for about 48 hours and then she switched to Tylenol. As long as she doesn't move her arm in a lateral motion, she really doesn't feel much pain at all. The lateral movement must be limited for 4 to 6 weeks.

Just before going in for surgery, Jo did have another CT Scan of her head and the blood clots in her brain are completely gone! On the PNH front, Dr. Alvarez thinks that things look good enough right now that we will put any further discussions of Soliris off until we go back to the NIH in February for Jo's annual checkup.

Remember, life is all about perspective. If you have to have shoulder surgery, go have lunch with somebody who just had a total hip replacement. If you have to have a hip replacement, go have lunch with somebody that just had open heart surgery. If you have to have open heart surgery, go have lunch with somebody that just changed Anna's last poopy diaper!

A Refurbished Left Shoulder

Jo's first shoulder surgery this afternoon went completely as expected. Dr. Kelly drilled a hole into Jo's shoulder, through which she scraped out all of the diseased bone. The space was then filled with a mixture of a special putty and bone marrow that was taken from Jo's hip. I did instruct Dr. Kelly to make sure she got bone marrow and not metal shavings.

No surgery is ever fun, but today's procedure was really a piece of cake compared to the hip replacements. I haven't seen it yet, but supposedly, the incision is only an inch or two long. Compare that to a 12+ inch incision for the hip, the total amputation of the femoral head, AND a fairly good size prosthesis inserted into her leg. Jo will experience some bone pain in her shoulder for a while, but with the hips so fresh in her memory, I can't imagine her having any problem handling it.

Due to the complications Jo experienced last time, only a general anesthetic was used today. There should be no chance of a repeat of the headaches from April.

Since the surgery got just a little bit of a late start, Jo will spend the night in the hospital tonight and most likely come home tomorrow.

Please Stop and Pay the Toll

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.

"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.

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.

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.

Bye Bye Emily

Earlier this week, Emily went back to England and we had to say our goodbyes. Emily did leave 10 days earlier than expected and I know some of you have wondered why. In light of Prince William's recent breakup with his girlfriend, Emily felt that she couldn't waste ANY time. The opportunity to potentially marry into the Royal Family is a once in a lifetime opportunity. How could we possibly offer anything but support?

Emily was with us for a total of almost 6 months and she was an absolute gift from Heaven. She got us through both of Jo's hip surgeries and for that we will be forever grateful. Anna is mostly happy that Emily agreed to leave her stuffed "Hippo" behind. We are working on a Green Card for Hippo so that he can stay permanently.

Jo has slowly stopped taking her pain medication and you would think she is doing great. The other day I asked her where she thought she was on a scale of 0% to 100%. I was shocked to hear her say, "I'm over 50%." I was expecting 85% or so. I think that shows how much Jo is just keeping to herself as she works toward a full recovery.

The other day, Jo's platelet count was at 168,000, which again puts her over the 150,000 mark required for the very low end of normal. This was great news since it always takes some time for her blood counts to recover after surgery. As for Jo's blood issues, our primary focus right now is doing some prep work to determine if and when Jo can start taking Solaris, the miracle drug that will help the PNH problem.

Easter Comes a Week Late

With Jo in the hospital last week on Easter Sunday, the Easter Bunny agreed to make a special trip to our house today to celebrate a belated Easter...and we got a lot better weather for our Easter than everybody had last weekend!

Jo is holding steady. The past couple of days she has felt like she might be having some relief from her headaches, but it is tough to tell. The pain medication masks the pain, but she still feels pressure in her head. Sometimes the pressure seems to be going away, but then it comes back. For now, we continue to wait.

Sky Ridge - Two Thumps Up!

Jo came home from the hospital today with a good plan for getting through the next couple of weeks. Overall, she said her experience at Sky Ridge was tremendous, second only to the NIH, which isn't even a fair comparison. At the NIH, each nurse has only 2 patients and every patient on the floor as the same health problems and the same treatment.

Sky Ridge is a great example of progress in the world. Many of the things that none of us like about hospitals have been eliminated. Almost every room is a private room, the rooms are as nice as a hotel and the food is actually very good. When we got home today, Jo got into bed and the first thing she said to me was, "This bed isn't as comfortable as my bed at Sky Ridge."

Now, I am still trying to wrap my brain around the Amenity Suites. These are special rooms on each floor that you can only get if you pay a fee over and above what your insurance covers. Jo and I took a walk one afternoon to sneak a peak and the room was very nice. If you are interested, here is a little info that might push you over the edge when the time comes for your next hospital stay...

A New Drug of Choice

Last night Jo was given a Fentanyl patch for her pain. This is a patch that she wears on her chest for 72 hours which slowly releases Fentanyl into her system through her skin. Fentanyl is another very powerful drug in the same family of drugs as Dilaudid and Percocet, both of which we are very familiar.

Jo isn't feeling much pain and she seems to be doing really well. Her headaches are pretty well masked by the Fentanyl, but they do come and go.

Today, the nurses unhooked Jo from all of her IVs so that we could work toward getting out of the hospital. If Jo can go 24 hours with her pain under control, we will head home - most likely with a handful of Fentenal patches. Then we'll give her body time to hopefully repair the spinal fluid leak on its own. In a couple of weeks, if the headaches are not gone, the "blood patch" procedure will have to be considered.

The End of a Tough Week

I wish I had some good news, but I don't. Jo is having a very tough time dealing with her headaches. Now and then, the pain medication relieves the headache, but then Jo usually feels nauseous.

There is no good solution to this problem in the immediate future. It is possible that the intrathecal morphine shot that Jo received two weeks ago has cause a spinal fluid leak, causing the headaches. The treatment for that is a procedure to attempt to patch the hole. The anesthesiologists are unwilling to attempt that procedure because Jo would have to come off of her blood thinners, which would put her at risk of more blood clots. Since she already has a blood clot, it would be extremely imprudent to put her in a situation where she risks even more blood clots.

The best solution seems to be to tough it out until her body repairs the leak on its own (if there is indeed a leak). How long that will take is unknown, but it could be a couple of weeks. Our primary concern right now is identifying what kind of medication will get Jo through the rough times ahead.

The Headaches Continue

Jo spent another tough day at Sky Ridge today. I did get a chance to talk to Dr. Alvarez and get his thoughts. They have found 2 small blood clots in veins in the back of Jo's neck. According to the neurologist, the blood clots look to be a couple of months old, but Dr. Alvarez thinks they are related to her hip surgery two weeks ago. Jo is always at risk when it comes to blood clots, but especially when she has her surgery since she has to stop taking her blood thinners and then start again after the surgery.

The other possibility is that the headaches are spinal headaches that have been caused by a problem with the Intrathecal Morphine she received two weeks ago. As I understand it, the needle that delivered the Morphine to her spinal cord may have caused a "leak" and her spinal fluid is slowly leaking out. There is a procedure that can be done to attempt to "plug" the hole, but Jo cannot have that procedure until the blood clots are addressed.

Jo has been receiving medicine to break up the blood clots all day. Off and on, she feels some relief and other times the headaches are pretty intense. These blood clots are extremely serious and Jo will most likely stay in the hospital for anywhere from 3 to 4 more days or even a week.

A Bump in the Road

Last Sunday, Jo started to have headaches and by Monday night her head hurt bad enough that we needed to go to the Emergency Room at Sky Ridge Medical Center, Spa & Resort. If you haven't been to the new Sky Ridge facility in Lone Tree, you really should go and take a tour. It is more like a hotel than a hospital.

Monday night, Jo was admitted to the hospital and tonight she will spend her second night there. They have done lots of tests, but so far they have not figured out what is causing the headaches. Anybody that knows Jo, knows that she has a pretty high pain threshold, so her pain has to be pretty bad for her to be in the hospital.

Now, That's Not Natural

At 5:45pm last night, Jo took some pain medication - 5 days and 6 hours after surgery. At noon today, she called me to let me know she slept through the night, she had forgotten to take her pain killers and she was quitting, cold turkey! I told her that nobody would ever give her a hard time if she wanted to at least use the pain medication through the one-week point tomorrow morning. She says she can tough it out. At first, this speedy recovery thing was really cute, but now she's just showing off.

My Sacrificial Spirit...

Jo had another good day of recovery, but I don't want you to think that this hip has been a complete walk in the park. Well, yesterday, we did go for a walk in the park, but you know what I mean.

In one way, this hip has been 10 times worse than the first hip. Because Jo needs her surgical hip toward the outside of the bed, we have had to switch sides of the bed. If you have ever slept on the wrong side of the bed, you know how tough this has actually been on me. It's hard to believe how sore you can get by morning when you sleep on your "other" side.

I guess if that's the worst thing we are dealing with, we should consider ourselves pretty lucky. By the way, I've only asked Jo three times today if she thinks she is up for switching back.

It's All About Priorities

Jo got a lot of rest today, but there was also time for a Sunday morning drive with a stop by Starbucks. You'll have to go back and read the blog entries from the first hip surgery to really understand how dramatically different this one has been. For all of you out there that have been procrastinating having joint replacements, don't read any of that stuff from November. I probably embellished the entire first experience anyway. This 2nd hip is how your experience will probably be. Trust me.

I did get a call from a home health care nurse today that wanted to speak to me and find out how my mom was doing with her hip replacement. Jo and I got a good laugh out of that one. I told the lady that we don't need her to come by. Jo will be going in to see Dr. Alvarez tomorrow and they will take care of checking everything that needs to be checked.

Anna is 4 1/2 months older than she was in November and she is stronger and faster than she was back then. She is having to learn how to be gentle with mommy. She likes to hold on to the side of Jo's walker and pull to try to get mommy to walk faster. She regularly points to Mommy's "boo boo" which is covered with a huge bandaid that covers Jo's entire hip and half of her backside. By the way, at the hospital they call it a "Texas Bandaid". How appropriate.

Has Anybody Seen My Wife?

I think every new parent secretly worries that their newborn baby will accidentally be switched with another baby in the nursery and they will end up with the wrong kid. I'm not sure how it happened, but I think I brought the wrong wife home from the hospital today.

My wife supposedly had a total hip replacement 3 days ago. The woman I brought home is already walking all over the house, sometimes with her walker and sometimes not. She has unpacked and put away all her things, made herself an evening snack and put her little baby to bed. I was expecting slurred speech, a little drooling and incoherent speech for a couple of weeks.

Percocet appears to be a much better match for Jo as far as controlling her pain. I hate to count any chickens before they are hatched, but so far, so good. We'll see how the night goes.

A Day of Experimentation

If the next 12 hours goes well, Jo will be coming home by noon or so tomorrow. Today was another very good day, although not without some minor hiccups. Jo had a fever for part of the day and she had some redness around her incision. The hospital staff will just need to keep an eye on her over night.

Today was mostly about experimenting with different pain medications. Jo would like to come home with some pain medication that would allow her a little more sleep at night, even if she had to deal with a little more pain during the day. Dilaudid was the pain medication of choice last November and it did it's job, but it also came with some not so desirable side-effects - slurred speech, constant nodding off and a fair bit of nausea.

Jo did quite a bit of walking today. She made at least 2 or maybe even 2 1/2 laps around the hospital floor today. The therapists absolutely love working with her. Their normal patients are between 70 and 80, so of course, the progress is normally much slower.

A Speedy Recovery

So far Jo's progress appears to be moving along much quicker than the first hip. About 24 hours after coming out of the recovery room, Jo walked an entire lap around the hospital floor with her walker. Although the pain medication does make her sleepy, she seems much more coherent than last time.

The only thing we can come up with is that in November, she literally didn't have a leg to stand on. This time around, she has one really good hip and a significant amount of her "referred pain" went away after the first hip replacement. Then too, wouldn't a person just want to recover faster with summer coming up as compared to the first time around as we were heading into winter?

I do have to admit that I may have been a little too detailed in my documentation of the first hip surgery. I feel like there isn't anything new or funny to report...on the Jo front anyway. Now Anna is a different story. She has figured out how to get her pajamas unbuttoned and then off comes her diaper. I can deal with her wanting to take her pajamas off, but little babies need to keep their diapers on when they sleep. Tomorrow, we bring out the duct tape!

A New Right Hip

Jo went into the Operating Room at about 9am this morning and she was finished by 11:30am. She is now in her room resting. According to Dr. Kelly, everything was pretty routine. Jo did get "intrathecal morphine" today. That has something to do with the morphine going directly into her spinal cord, which from the look on Jo's face, seems to be quite effective.

Spring is in the Air...

and by noon or so, Jo will start to get some spring back in her right hip. We are headed down to Presbyterian St. Luke's for hip surgery #2. Jo has received a ton of well wishes over the past couple of days and she wants to make sure you all know how much your thoughts and prayers are appreciated. Thank you!

Happy St. Patrick's Day

3 more days and a wake-up until hip surgery #2. We have pre-game at 6am and kickoff at 8:30am. If all goes as planned, Jo will be back home from the hospital by Saturday. Meema will fly in on Monday to help hold down the fort for that first tough week. Oh, by the way...I do plan on taking a swimsuit or two to the hospital for Jo...just in case.

2 Years, 3 Months and 18 Days Later...

Main Entry: nor·mal
Pronunciation:\ˈnOr-məl\
Function: adjective
Etymology: Latin normalis, from norma
Date: circa 1696

2 a: according with, constituting, or not deviating from a norm, rule, or principle
b: conforming to a type, standard, or regular pattern

synonyms see regular
— nor·mal·i·ty \nOr-ˈma-lə-tē\ noun
— nor·mal·ly \ˈnOr-mə-lē\ adverb

For the first time in over 2 years, Jo's platelet counts today were in the "normal" range. If you look at her CBC report above, you will notice the absence of the "L" next to the Plt count that we have become so accustomed to seeing. This is probably the biggest news we have had in the entire 2+ years!

You can also see the three "L"s next to the RBC (Red Blood Cell), Hgb (Hemoglobin) and Hct (Hematocrit). These are all measurements associated with Jo's red blood cells and all three are still in the low category due to the PNH. However, keep in mind that her Platelets have always been the primary source of source of concern due to the critical level to which they dropped. At Jo's 8 week pregnancy checkup in November, 2004 her body was not producing enough platelets to support everyday life.

We've been waiting a good while now to see that little "L" disappear. There have been a couple of times that Jo's counts got close and then they backed off, dashing our hopes. Today we bask in the sweet thrill of victory!

One Year Checkup at the NIH

Jo had another lovely bone marrow biopsy done today at the NIH and I was scolded for harassing the patient. It's just hard not to play with the patient when she is sedated and can't remember anything she says from one minute to the next. Keep in mind that Jo doesn't remember one single thing from the procedure, but my life will go on with even more memories of that giant needle going into her hip. Oh, the emotional trauma I have endured...

We saw Dr. Schienburg and Dr. Childs today. Even though we haven't spent a lot of time with Dr. Scheinburg, he is the primary physician in charge of this particular protocol, under the watchful eye of Dr. Young, of course. Each of the doctors talked about Jo's Aplastic Anemia as if it were "gone" and the primary source of concern now is the PNH problem. Jo will always have to be monitored in case her bone marrow relapses, but for now the Aplastic Anemia has been pushed into remission.

Jo began having another PNH episode yesterday or today, which is maybe good since the NIH doctors will get some blood samples first hand. Our #1 question for today was in regard to the miracle drug that was supposed to come out last fall to solve the PNH problem. It is still on the way. Dr. Childs expects it to be available in early 2008. Dr. Scheinberg said it could be 3 months or it could be 15 months. I think the real answer is that they are not allowed to give us their real thoughts due to the sensitivity of that kind of knowledge.

We did find out more about the miracle drug though. Jo would have to get it administered intravenously every two weeks...for the rest of her life. Those were not the best words in the world to hear. After some thought, it doesn't seem as bad as at first. More than likely, they will continue to improve the drug and develop it into oral form as some point. As for today, they are probably just hoping to get it to market the fastest way possible.

Another thing the miracle drug will do is allow Jo to stop taking Coumadin every day to thin her blood. The primary issue caused by the PNH clones is the potential for blood clots due to the cell debris in Jo's blood. The miracle drug will stop the destruction of the red blood cells - the reason that clotting is a concern.

By the way, yes I do know that I spelled Dr. Shein "Ice" berg's name 3 different ways above. I have no idea how he spells it.

The Love Bug Visits Highlands Ranch

As has become customary at the Szymanski household, Anna has had her holiday photo shoot for tomorrow's Valentine's festivities. Keep an eye out around Denver tomorrow for the Love Bug spreading holiday cheer and maybe a chocolate kiss or two.

The mystery of the fluids of last week has now been revealed. Jo had an "episode" in terms of her red blood cells. For no apparent reason, her body was destroying red blood cells at a very rapid pace, creating a massive amount of cell debris to be processed by her kidneys. Dr. Alvarez had Jo come to his office for extra fluids 3 days to "flush" out her kidneys and she got a red cell transfusion to boost her counts.

What triggered all of the excitement was Jo's blood test on Monday. It was the first time in 2 years that her blood count report ever indicated an "alert". The report shows an "L" or an "H" and sometimes even an "LL" indicating low and high levels. The alert was for a measurement of her kidney functions. All is back to normal now. In less than two weeks, we head out to the NIH for Jo's one year follow-up and hopefully we'll get more information about the miracle drug that is supposed to solve her red blood cell problem.

Jo saw Dr. Kelly today and she confirmed the March 21st date for hip replacement #2. Dr. Kelly is extremely pleased with Jo's progress and she feels like everything is right on track. Jo did also have the opportunity to talk to Dr. Kelly a little bit about what will happen after this hip is done.

Jo's shoulders and knees still have pockets of necrosis that need to be treated. Jo has not had any increase in the pain in her shoulders and knees, which indicates that the joints are not collapsing like the hips. Dr. Kelly's plan is to use the "core decompression" technique on her shoulders next to try to reverse the progress of the disease. Little Miss Overachiever asked Dr. Kelly if both shoulders could maybe be done at the same time. Dr. Kelly replied, "Not if you want to be able to brush your teeth."

"Gearing" Up for Hip #2

All right already! A guy doesn't do a blog entry for 6 weeks and everybody is ready to send him to the gallows. I thought the old saying was, "No news is good news." Plus, I've been shoveling snow nonstop for 6 weeks. Now that the normal Denver winter is back (60+ degrees today), I guess I don't have an excuse anymore.

Emily is now back from England and she and Anna have gotten reacquainted quite quickly. Emily was very excited to get back to the land of Milk and Honey. She said the snow in Denver even made the news in England! Fortunately for us, Emily's memories of the M*A*S*H unit of last November have all but faded completely away.

My mom is already scheduling her flight into Denver to help for that first week or so after Jo's surgery, which is still set for March 21st. My father will pick her up on his drive back from Arizona to Minnesota for the summer.

Jo and I head out to the NIH in Bethesda on February 26th and Jo will have another bone marrow biopsy on the 27th. We will now only be required to go to the NIH once per year. Hopefully we will get some good news about the "miracle drug" that is supposed to take care of Jo's red blood cell problem.

Jo's red blood cells have actually been low for the last week or so and Dr. Alvarez is considering a red cell transfusion later this week. He called her into his office today for fluids and she has to go back tomorrow and get more. We are not 100% sure what the fluids are for, but they may very well just be to make Jo feel a bit better. Low red cell counts also mean fatigue and Jo has definitely been feeling run down.

As for that new left hip, it feels great according to Jo. The range of motion she has in her left hip right now compared to her right hip is amazing! She says it really does feel as good as new and she cannot wait to get the 2nd one finished.

A Serious "Pat Down" at DIA

Jo, Anna and I traveled from Denver to Texas today, narrowly escaping the remnants of the blizzard earlier this week that wreaked havoc on Holiday travelers trying to get out of Dodge for the Holiday. With many of those travelers trying to get rescheduled on flights this weekend, the lines for check-in and security were at all-time highs sometimes wrapping from one end of the terminal to the other and then around a corner and out of sight.

For many of the weary, this morning was an exercise in extreme patience. For the Szymanskis, it was an opportunity to see the glass half full instead of half empty. This was, of course, our first time to travel since Jo's hip surgery. The baggage guys must have noticed Jo trying to navigate the crowd on one good hip and one bad hip and me carrying the baby and all the luggage...or maybe Jo was secretly waving a much larger wad of money than I had in my hand. Either way, their gracious offer to take us straight to the front of the line was much appreciated!

Of course, with one bad hip, it would still be next to impossible for Jo to walk all the way from the main concourse to our departure gate. The only real option is a wheelchair...which does also mean that we cut straight to the front of the security line via the "airport employee/wheelchair only" security entrance.

Anna and I quickly jumped through security and began gathering our bags when the metal detectors started going off louder than I have ever heard. For a second, I thought that maybe Snoop Dogg or P Diddy had just tried to come through security after refusing to remove any jewelry. I turned around to see my lovely wife, lighting up the security machine like a Christmas Tree and a screening agent saying, "So, Mrs. Szymanski, what exactly are you hiding under your clothing?"

Oh well...all's well that ends well, right? To all of our other friends from Denver that I know had to battle those long lines this weekend at DIA, we (almost) felt your pain, but having a metal hip has to come with a few perks.

Merry Christmas everyone! We love you all!

A Tentative Date for Hip #2

Jo has decided to set a tentative date to have her second hip replaced - March 21st - the first day of SPRING! When we saw Dr. Kelly for Jo's follow-up appointment, Jo was given a perfect score on her report card. She does still need to gain weight, but having a point on the horizon to focus on is good motivation (to eat more ice cream).

Jo has her final appointment with the physical therapist tomorrow who says Jo is the strongest patient they have ever had. Dr. Alvarez thinks it will be 6 months before Jo has her next hip done. Good old Dr. Alvarez, always taking the most conservative approach when Jo's health is on the line.

Anna went to the mall to have her picture taken with Santa and she screamed her head off. Can you blame her? Without the ability to really understand Christmas, the big, fat man in the tight red suit is actually quite scary.

Since I am back into one-blog-per-month mode, I want to pass along our wishes for a Happy Holidays for you all! Have fun, eat a lot, be merry and watch out for fat men in red suits (Anna added that last part).

This is Going to Hurt Me More Than it Hurts You...

Here we are on the 3 week anniversary of Jo's surgery and, magically, she is almost as good as new. She is cruising all over the house with just her cane, she says she feels great and it's as if the last 3 weeks were just a dream.

I asked Jo, "Do you remember waking up in the middle of the night and begging me for more pain medication?"

"Nope."

"Do you remember going to Swedish Hospital in the ambulance."

"Not really."

"How about getting me up every 2 hours to help you out of bed and then back into bed."

"Hmmmmm........no."

These days, Jo sleeps peacefully. It is I who wakes up with the cold sweats, worried that if I close my eyes again I'll be back in the jungles of Vietnam, the bombs going off all around me. The Viet Cong are closing in on my location, while I lay beneath the waters of the river bed, breathing through a straw, hoping not to get caught...okay, maybe I was still in diapers when Vietnam ended, but I could have nightmares about Desert Storm, although I never did leave the comfort of my engineering office during the entire campaign.

Anyway, it's funny to look back over the last 3 weeks and realize that Jo remembers very little of it. Just today, she asked Emily who got her the get well balloon and bear. Emily had to remind her that she had gotten it for Jo herself.

Most of my concern centered around how much pain Jo had, but 3 weeks later she has almost no recollection of that pain. It makes you wonder...if Jo can't remember it, did it actually happen? In Jo's mind, or you might even say that in her perception of reality, it actually didn't happen.

Bring on the right hip!!!

No More Walker

Shortly after being released from Swedish last week, Jo came down with a terrible cold that really hit her hard. Her blood counts are still recovering from her surgery and the cold definitely took its toll. Yesterday and today she had to go to Dr. Alvarez' office and get IV fluids, but this evening things are starting to look up.

Jo is now walking around the house with just her cane, and she has been completely free from pain medication for about 3 days. Actually, the cold she had created headaches bad enough that it made her completely forget about any lingering hip pain.

Overall, it looks like the true recovery process is about to begin. Jo needs to gain about 10 lbs. and work on getting her full strength back in preparation of doing it all again after the 1st of the year. On Thursday, Jo and I are going to see Dr. Kelly for a follow-up and I am sure we will talk about a time frame for the 2nd hip.

Even in her weakened state, I have noticed how much easier Jo gets up and down from a sitting position and how much easier she gets in and out of bed. Already, I can see the new hip making a tremendous difference!

Happy Thanksgiving!

Has anybody seen a couple of Pilgrims? I have a dinner date and I don't want to be late.

Clean Bill of Health

Everybody seems to be back to 100% and Meema escaped completely. Supposedly, you are contagious before you even know that you are sick, so I feel sorry for all those kids at Kindermusik last week!

The Occupational Therapist visited Jo today and admitted there wasn't much more she could do to help. She asked Jo if she could take some video so she could create a short film to motivate her 70 year old patients to get back on their feet a little quicker.

And Then There Was One

Jo slept extremely well last night. How do I know? Because I was up being sick all night. Being the student of positive thinking that I am, I have told myself a million times, "I don't get sick." However, last night this little family bug slipped through the cracks. Anna is on the mend, Emily is on the mend and my mother is the last little Indian still standing. Although the doctors never found anything that they could blame Jo's high fever on, I feel that it is very possible that she got this bug that started with Anna and now spread to us all. Jo had a very different experience than the rest of us, but Jo also had very different care.

One thing that I think is important to note here is how well Jo's immune system was able to cope with a very tough situation. She did get a ride to the hospital and she did get medication to boost her white cell production in the hospital, but back before we went to the NIH, this is just the sort of situation that her body may not have been able to handle at all. Of course, it is not the kind of "test" that we want to volunteer for again, but there is some peace to be found in knowing that Jo's body (with some help) can fight off a very serious attack.

As for the new hip, Jo is still using her walker a lot, but she can definitely get around with just her cane and even no help if necessary. The biggest struggle is the fatigue that sets in when you combine some physical exercise with strong pain medication, but progress can be seen every day.

Scratch the Email Idea

Things seem to be changing around here faster than my father's predictions for the Minnesota Vikings' season. After 36 hours in the hospital, not one single thing had turned up to indicate why Jo's temperature may have spiked, and Jo actually looked ready to head on back out to the dance floor. My mom and I walked into her room this morning and she was walking around without even using her walker.

This afternoon, we returned home again - so, scratch that email idea I had yesterday. Once we got home, things got a little tough again. They aren't so bad that we expect to go back to the hospital, but the picture isn't as rosy as it was at Swedish. Some of that is due to the difference between Jo getting pain medication delivered directly to her blood stream vs absorbing the medication through her stomach. Even though it is a bit more of a struggle, Jo would much rather be at home.

Send an Email to Jo in the Hospital

Jo's temperature has come back down to normal today. So far, the cause of the high fever has not been determined. She is expected to be at the hospital for another 3 or 4 days. While she is there, please feel free to email her by clicking on the link below. Volunteers at the hospital will deliver emails to her daily.

If you do email her and you don't live in the Denver area, please include your city, state and/or country. I know that dancers all over the world read this blog and it will be fun for Jo and the volunteers to see where the emails are coming from. Jo is registered at the hospital under the name of Jo Thompson Szymanski and her room number is 7-121.

(Link removed becuase Tim may have jumped the gun.)

Jo's Temperature Hits 103.9°

Today started out really good. It looked like we were over the hump. Anna scarfed down some eggs for breakfast and Jo's temperature had come down to almost normal. A little after noon, things started to go downhill fast.

Jo's temperature started to rise and it quickly got to over 101.5°, which is the point at which we had been instructed to call the doctor. After a quick call to Dr. Alvarez, the decision was made to make a trip into his office. By the time Jo got to Dr. Alvarez' office, her temperature was 103.9° and she was in terrible shape. Dr. Alvarez arranged for an ambulance to take Jo over to Swedish and have her admitted via the Emergency Room.

After 5 hours in the Emergency Room, Jo is now resting easy in a room at Swedish. Her temperature has come down to 101° and the pain medication that they have given her is working well. Dr. Alvarez said he may keep her there 3 to 5 days to make sure she is properly cared for.

The number one concern is that of Jo getting an infection that her body would not be able to handle considering the history of her immune system. The obvious worry is that her incision could become infected, but actually her incision looks extremely good and everybody that looked at it said they would be very surprised if it was causing the problem.

I am sure that by the time Jo leaves the hospital, Dr. Alvarez will have run every test known to medical science and hopefully we will know exactly what has caused this scare.

Never Trust the Patient

Last night, the patient tricked the caregivers into a double dose of pain medication. Of course, Jo did not do it intentionally, but we learned a valuable lesson - never trust the patient. Jo had gotten into bed for the night and I had given her some pain pills. After dosing for a few minutes, Jo woke up and asked Emily if it was time for some medication. I have a new understanding of why hospitals have a system for everything.

Today will be a day filled with visitors. The home care nurse is already here to draw blood and check Jo over. Later today the physical therapist and the occupational therapist will come by. Then tonight, the reserve forces get called into action. Meema is flying in from Minnesota to help out for a week. We really need Emily for another year, and preserving her sanity will help us make that possible. Thanks Meem!

M*A*S*H 10950

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.

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.

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!

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.

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. 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.

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.