My wife's double lung transplant updates

(May 2004)
I'm writing this to all of you who have sent me emails and either not received a reply or it tooks several weeks to get a reply. I apologize for my poor communication, but if you read below, you'll understand why.

In September 2003, my wife was diagnosed with a rare lung disease called Broncholitis Obliterans Syndrom (BOS). IF YOU HAVE RHUEMATOID ARTHRITIS, ASK YOUR RHUEMATOID DOCTOR ABOUT IT. 70% OF ALL RA PATIENTS GET THE DISEASE, BUT ONLY 2% SHOW SYMPTOMS!

BOS is one of those health problems that the doctors really don't know what to do about except put the patient on large doses of immuno-suppressive drugs like Prednisone, Celcept and Neoral (Cyclosporin). If you catch it early, and the drugs work, it's possible to stop it from progressing any further. This was not the case with my wife.

Her lung capacity has diminished over the past six months dramatically. A woman her age and height should have a lung function of ~2.5L/min. Her test this morning was at 0.58L/min. If you do the math, you'll see that she has about 23% of her normal lung capacity.

She about to be placed on the lung transplant list and this will effectively end her life. It's only a matter of how much time is left. The average 5 year mortality rate is ~50%. That's not much time left for me to spend with my soulmate.

And just so we have the maximum amount of stress to deal with, I lost my job in November and didn't find a new one (that pays 40% less) until February, we had to move into temporary housing from November to January (yes, that was over the holidays) while our house was being cleaned, disinfected and all the flooring replaced. After we moved back in, her mother stays with us Monday-Friday to take care of my wife while I'm at work.

So, to get back to the intent of this message, if I don't respond to your email, or it takes a long time for me to do so, it's not because I'm trying to ignore you. I'm simply prioritizing my time towards my wife. I'm sure you can all understand that. Thanks for reading this and understanding.

(December 2004 Update)
I lost my job again in August, but found some temp work for a couple months until I finally landed a decent job in December. I think this one will last a while. In November 2004, she finally got on the lung transplant list at Cleveland Clinic. We've even had one "dry run" where we were called and drove to CCF, but the donor had issues that kept us from using the lungs. :-(

She has been steadily declining and is now down to 0.45L/min, or 17% of normal lung capacity.

Thanks to all of you for your support! It really helps to know that others are thinking of us during this difficult time.

(February 2005 Update)
Things are getting a little better. The contracting job I found in December should (fingers crossed) turn into a permanant position on April 1. Then I won't have to be worrying about making the mortgage payment on top of everything else.

Speaking of everything else, my wife is #1 on the transplant list for her blood type. There were two possible matches this past month, but the lungs had problems. We're very optimistic right now. Also, her FEV1 is still holding at 0.45L/min (17% or normal lung capacity) so that should buy us more time.

Below are some links to some very important websites. I hope you take some time from CM to look at them and become an organ donor. Make sure others know your wishes as you probably won't be able to discuss them when it's needed. You can save the lives of 12 people just by donating your organs. When is the last time you thought of yourself as a hero?

(March 2005 Update)
Well, it's finally happened. My wife got her new lungs on March 23rd!!!!!
I don't have time to write much now, but will update this page a little later. Thanks to all of you who sent us your messages of support and caring. It all paid off!

(May 2005 Update)
We're finally back home! The surgery went great. She's already up to 1.58L (63% or normal lung capacity) on the spirometer and will continue to improve over the next several months.
Thanks to everyone for their support, kind words and patients during this time. It's really amazing to see how people will how support for others they've never even met. You guys are the best!

(July 2005 Update)
Every day, my wife gets a little better. She's now up to 1.76L (70% or normal lung capacity) on the spirometer and down to 5mg/day of prednisone, a steroid used to control/reduce the immune system. She had been as high as 60mg/day. All of the drugs have certain side effects that no one would want, but she is one tough chick! Loss of muscle mass, sleepless nights, skin bruising easily plus many others.

We got her a car and she's driving around town again, although not alone yet. She's got her morning routine down now without help from anyone. She goes to rehab 3x/week and exersizes at home 2x week. Her muscles are coming back, but slowly. At her low point, I could put my hand around her calf. But those days are gone! She's still not 100%, but I can see her getting closer to it every day. She even started cooking dinner again this week. Her mom helps prepare and fetch, but my wife is doing most of the work. And she's a great cook too!

It really is amazing how she handles all of this. I don't know if I would have the stamina to keep up the exersizing, the drugs, the doc visits, etc., but then again, I'm a lazy fart. ;-)

(December 2005 Update)
It's been a long time since my last update. My wife's progress has been slow, but steady since the summer. She's now getting 2.00L-2.10L (80%-84% capacity). She had one bout of rejection in October, but has been doing well since then. We go back for another bronchoscopy in January, but expect good results from it. She has been running around this month, playing Mom and Wife, getting everything ready for Christmas. It's her favorite time of the year and I think she really enjoyed it this year. We're looking forward to MANY more holidays like this together!

(December 2006 Update)
WOW!!! It's been a year since my last update, but it's been a good year. My wife a small bout of a bacterial infection (called RSV) in February that required 3 days in the hospital for some drug treatments. But everything turned out OK. We had one son graduate college in June and the other is graduating this month. We went on a family vacation to The Outer Banks NC and had a great time. Then she came with me on a training trip to Washington D.C. It was her first time in an airplane since her transplant. I have started a second business (Law Label Services) and she is helping me while at home. Overall, it's been a wonderful year and a wonderful time with her!

(August 2007 Update)
I really need to update this a little more frequently! ;-)
It's been a very busy, but healthy year. My wife's lung function has increased to an average of 90%-95% of normal capacity. This has enabled us to do some traveling. We went on a long weekend trip to Chicago and we're going to Las Vegas/San Francisco later this year. Both boys now have full-time office jobs and have moved out of the house.

(April 2008 Update)
Well, it looks like I spoke too soon. on September 3,2007, my wife fell and broke her ankle in three places. This required surgery to repair with 9 screws and 1 plate in her leg. OUCH! Normally, it takes 6-8 weeks to recover most movement and 12 weeks for full recovery. Since she is a transplant patient, those estimates are DOUBLED to 12-16 weeks and 24 weeks for full recovery. She could not put any weight on her leg until the holidays were over. It sucked for her because that is her favorite time of the year. She has mostly recovered by now, but needs to have the screws and plate removed to regain 100% movement in her ankle. That surgery is in a few days. Hopefully, after that she'll be back to 100% again.

To see what 9 screws and a plate in your ankle would look like, open the picture below.

Todd Johnston
aka cozog
aka ColumbusOHGamer
aka COG