Duke does not want to see me anymore!!

It has been a while since I last posted and I have some great news!

Since last writing I have been to my pulmonologist a couple of times and just got back from Duke on Tuesday the 21st. Since first diagnosed my Pulmonary Function Test (PFT) has shown a 51% lung function in Nov 07, again in Jan 08, then in April of 08 at Duke my lung function went up to 61%. On Monday my numbers are now 70%. That is a huge increase in lung function and I feel it.

I also have been going to pulmonary rehab for the last few months and it also has shown steady increase in ability.

Let me be clear - this is not supposed to happen. Pulmonary Fibrosis does not get better. And yet I do not have even the slightest hint of it in my lung sounds now. The velcro sound is gone. (again - something that does not go away). My doctors are stumped. They think I was misdiagnosed even though evaluated by Mayo clinic, Duke, and a local pathologist.

Today in my study of Moses I was asked the question "Can you relate a time when you were put in impossible circumstances and God delivered you, thus bringing glory to Himself?"

Can I ever! Prayer works folks. I continue to offer God the praise and ask for Him to bring me back fully. Thank you for your prayers as well.

Update from Duke

I got word this afternoon from Duke what we suspected. All my tests came back fine and I am a candidate for transplant but the doctors at this time feel I am too healthy. They have contacted my pulmonologist here at Charleston and will be coordinating updates as I progress. They also have scheduled me to come back Oct 20th to Duke for a followup and check on my condition.

It is really a praise to God from my standpoint. My medication has stabilized my condition and I have not lost any lung function since last November. I also have great blood-O2 concentration at 96 percent which means my heart is doing a good job at pumping blood through my system.

It could be quite some time before a transplant is neccesary. My next steps are to enroll in a pulmonary rehab program and maximize my lung capacity and endurance as much as possible.

Thanks to all who continue to pray for me. I feel confident that God has me in the palm of His hand.

-Todd

All finished at Duke

Just wanted to thank everyone for their prayers while Dawn and I were at Duke. Your prayers were answered. We had all good appointments and the kids did not burn down the house.

I had a Echo Cardiogram and Cardiac catherization on Friday. The first scan indicated my heart valves are like Tupperware - no leaks (that is a good thing) and the catherization indicated I have two small 10% "leaflets" or blockages that they say is good for my age and family history. So my heart looks good to go.

Dawn and I left at 5 pm on Friday and got home at 10:30. Due to the catherization I am not allowed to drive or lift anything over 5 lbs so it was a perfect excuse to lay around the house all day Saturday.

The doctors at Duke will meet Tuesday to discuss my case and I should have an answer Wednesday or Thursday. I anticipate that I will be a candidate but told to wait.

Thanks again for the prayers. Will update when I have some news.

Added a short video for Keri's graduation banquet at Church.

-Todd

Four days down at Duke

Well I survived the nose tube. It actually was not horrible after a few hours. Does affect your sleeping though.

Dawn and I met with the Duke Center for Living this morning. Duke is very much interested in keeping you as healthy as possible and wants me to go through Pulmonary Rehab to learn how to stay as healthy as possible. I did a six minute walk and my O2 levels stayed up in the 94 percent range which is good. They may want me to get O2 so I can even stress myself more without dipping into the 80's. It appears from most folks I have spoke to that this may be a while before I have a transplant probably measured in years rather than months.

Also met with a financial councelor today. Looks like their projections for the evaluation this week is 55K, Transplant to be 385K and after care to be another 350K in cost. Insurance picks up most but looks like we will still be responsible for the living expenses while here at Duke for 8 weeks estimated at 10K.

Have my heart catheritization Friday and will be heading back to Charleston after that.

God has been good at providing for us and it will be interesting to see how He continues to use this condition of mine to reach others.

-Todd and Dawn

Day three at Duke

Well I am sitting here with a tube down my nose for the next day. Not a pleasant experience. If you haave the opportunity I would suggest avoiding it. They are measuring the pH level in my stomach and asophagus to see if I will have problems with stomach acid. Evidently it can be a real issue for those with lung transplants and cause complications. Initially anyway I am a good swallower so I should not have an issue.

I had a Barium swallow test earlier today that went OK. It is pretty nasty stuff and leaves a very gritty taste. That was normal the docs said so my diaphram is working well.

My prayer is I don't suddenly have the urge to yank this thing out. Check in later. -Todd

Day One at Duke

I wanted to give an update after day one at Duke. Dawn and I are staying in a local hotel that has a shuttle back and forth to the hospital complex. We had appointments all day Monday at the South clinic.

Our day started with an orientation and met several staff members. We are getting a consistent message of delaying lung transplant as long as possible. Duke wants to keep you in your natural lungs as long as possible. They have a large Center for Living that Pepsi helped establish that some refer to the torture chamber. They are part of Duke's methodology to get you as healthy as possible by exercise, rehabiliatation, and pushing your physical limits. We meet with them on Thursday.

I had some trepidation Monday as they drew 28 vials of blood. I was not sure I had that much blood! Also met with the pulminologist and lung transplant surgeon. They both thought I was in pretty good shape but urged it was important for me to be seen as they will track my progress.

After all this week tests the doctors will meet next Tuesday to decide three things: Reject me based on some physical condition, schedule me for a transplant, or have me wait. There does not seem to be anything to reject me at this point and I have a suspicion that they will say not yet.

As a result of this week tests I will be assigned a Lung Allocation Score (LAS) score. It is ranked from 1 to 100 (100 being worst) This is a system that is used to determine need. As I get updated and progress/things change they will update this score. Duke uses this score to schedule your transplant. When they determine that it is time we will have to relocate to Duke two weeks prior to the transplant and then be listed. On average they say it is 28 days from when you are listed. After the transplant we will need to be here probably 6-8 weeks.

So it looks from what we have heard it may be quite some time until a transplant takes place. Listening to the side effects and downside to transplanted lungs I am not sure that is a bad thing. Kidney issues are common, diabetes, and reflux should be expected. Life expectancy is limited to years and it is not a question of if but how long you will last. Average is 5-7 years.

It may seem to be a dismal picture but I am encouraged based on my health, support, age, and response to the medications. The doctors seem to think that it I can keep my current set of lungs for a while. It is a different perspective that I had not thought of. There are certainly people here that are in much more desperate shape. And yet I have hope that God has a plan for me to keep me healthy until it is time for a transplant.

Will update as we progress through the week.

Todd & Dawn

Back from Banff

We just returned from a week in Banff, Canada. It was a great opportunity to reconnect as a family. I have posted some pictures on my picasa page at http://picasaweb.google.com/toddmiles/Banff

It is still very much winter there in March. Plan accordingly. If winter sports are your thing there is lots to do. Skiing, snowboarding, and hiking in snow were hilights.