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.

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...

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.

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!

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.