Health UpDATE!

Here are a few tidbits that I learned today at my Dr’s appointments…

My PFT’s are up from 94% to 100%... (2 weeks ago they dropped from 107% to 94%, a 13% decrease for me which alarmed the Drs causing this trip).

            The Drs. are fairly certain that the decrease was cause by infection and not total rejection. Since I have been treated once for a MILD chronic rejection, that damage is irreversible, but seems to be more stable.  During my Bronchoschopy on Friday they will determine if I have a lot of infection (meaning that is the probable cause and culprit) or if there is not much infection then they will take biopsies to see if there is some acute rejection.  If its acute rejection it is fairly treatable with Intravenous steroids, if it’s not acute rejection then they will discuss the how soon we need to do a different type of rejection treatment called photopheresis.  If its infection there will most definitely be IV antibiotics for treatment administered for two weeks and repeat of PFT’s every two weeks.

The polyps in my nose have grown back, with infection. Therefore I will be starting a nebulizer through a mask once a day and rotating antibiotics monthly to fight infection in my nose/trachea/lungs.

            I’m going to start and inhaled steroid to lower my prednisone dose (oral steroid) to reduce long term effects of high dose prednisone.

            The handheld Spirometer that I use daily at home to test my lung function is to determine if there is a large infection prevalent, rejection is determined by long term drop in my PFT.

            Increased exercise is a must to keep airways clear and open and increase the life of the new lungs.

Things are looking good. My new lungs are capable of 5 liters of air which is uncommon for my body size. Cystic Fibrosis increases your chest cavity size, and when the new lungs are inserted they can be larger (helps increase the odds of getting lungs).  My 94% refers to about 3.9L of Air while my 107% refers to about 4.5L of Air.  Directly after transplant (twice) I registered 5.5L of Air, while the average has been closer to 4.7L.  The 4L of air is 3 times as much air than I was getting when I was listed for transplant…

In conclusion, I feel amazing, I can do more than I have been able to in several years, I’m enjoying life and I have a long, long way to go before we have to reevaluate another transplant!! Thanks for all the Love, Support and Understanding over that last two years!!!

If you have any questions please ask!!! 

Just a year!?

Yes Its been a year! Can you believe it? I sure can't. I've spent a lot of the last several weeks rethinking, reliving and revisiting my journey.  I cannot express the gratitude and appreciation I have for each of you reading this, all the support I've had and continue to have on this journey and the series of events that led me to this point in my life. I cannot thank enough the Donor and that family for allowing the gift of life to be given in the unfortunate event in their life. The journey has made me a very humble person, shown me to have no regrets, and appreciate the gift of life that much more. I need to personally thank my Mom and Dad (and Jake) for the side by side steps they took with me, for me, and the incredible patience they showed, when I move back in, recovered, swang my moods, needed to get out of the house, adjusted medicines and the many many trips to St. Louis. I love you and could not have done any of this without you! Another much appreciated thanks goes to my many work friends and friends in Joplin, who without hesitation visited, called, supported, watched my house and kept me up to date on life, and work. My extended family, especially my uncle Neal and Great friend Joe. Jake, Jarrett, Cole and Eric my best friends who were always there if I needed to call and talk. And several new transplant friends. The other bigger family that I have in Barnes-Jewish employees and personnel.  I spent many nights talking, breathing and putting my complete health and well being in the care of these wonderful people. I wouldn't be here if it was not for all the effort of the above people and the grace of God.

Year visit ----

My PFT's remain phenomenal, 115% and steady. I'm getting "fat" according to a certain few friends and holding 135-140 easy. I have to increase some vitamins, adjust some dosages on immuno-suppressants and get my blood sugars back under control.

Prior to my 1-year appointments I went on IV antibiotics to help with a sinus infection. My cultures indicated that I needed to switch different antibiotics and the lungs were cultured again in my bronchoscopy. The bronchoscopy showed that I have A1 rejection, which is very minimal.  I have had this once before, and while not expecting it feel fairly certain that the rejection will be reversed. The treatment is some increased steroids and another bronchoscopy in the middle of December. My bone density scan showed no Osteoporosis. I also have decided to have my 6th sinus surgery in January to help prolong some more infection. The end result: very good reports.

So over the last year, I've exercised, built myself back up and am normal again.  I was able to play basketball the other night for 3 hours without stopping and coughing up a lung. I could compete, I could run, jump and shoot repeatedly and without pain. I played "21" the basketball game and won. I was able to coach my sons t-ball and soccer team this year. I could also run the whole entire length of the soccer field, yell (I mean coach) and think without passing out.  I played in a corporate challenge (kick ball, ya be jealous) and amazed (and probably scared) my co-workers at my incredible new body. I've been able to swim, run, ride bikes, jump, walk, talk, take care, see the first days of kindergarten, and start new traditions with Brayden. I am most thankful for the opportunity to be able to enjoy life and teach my son again. I can give him the attention he needs and enjoy the joyous life of parenting. This Thanksgiving and Christmas season, I am most proud of the fact that I get to enjoy it whole heartily with minimal worry with my son. The love and support I am now able to extend him, was worth every bit of time that I was away from him during surgery time.  Please see some of the amazing times we've had this year below.  The picture above is a new hobby Brayden and I are learning together. Stargazing and photography in the outdoors. This journey, much like the beautiful sky above has been indescribable! Thank you and God Bless you all!

Please leave a comment, your e-mail or ask any questions and I will gladly reply.

Midsummer's day report!

8 Months and counting! PFT's 116% and holding. Weight slowly climbing to the 140's. Life is GREAT!

Many thanks again for all the support and prayers during the last several months. Its been a while so I thought I'd let everyone know whats going on:

Last March (2010) I assisted coaching baseball, and boy was it a chore. Last August/September (2010) I was a head coach of soccer, and I couldn't do it without oxygen or moving more than .5 mph. I couldn't walk up stairs hardly at this point last year and I was no where near thinking about a transplant. Well... the good news is, this year I coached t-ball and could run faster and longer than my 5 year olds. I'm getting ready to coach soccer and am hoping to run circles around the 5 year olds. As for the stairs, they don't even make a dent in my breath hardly.

I've been very busy working. With the recent tornado that blew through, lots of Electric to be put back up. I myself was not personally affected by the tornado other than long hours at work for a week and half but know several that were. Many prayers for them and the area. I was actually in St. Louis for my 6 month check up when the storm rolled in the area (the pictures do not do the damage justice). The check up went almost flawless with only a small report of some normal lung infection which was promptly corrected with a quick dose of IV antibiotics. No sign of rejection and happy reports from the doctor. The only slightly bad thing was that

i'm due for sinus surgery. I will attempt to tackle that at the beginning of 2012.

Brayden starts school this year! He is incredibly excited, and ready to start tomorrow if he could.

I'm so blessed to have these new lungs. I compare the pre and the post transplant lifestyle and the vast differences. I can stay up later, I have more energy. I can keep up with Brayden and Madde. I don't have to take a nap ever other hour, and I don't have to tote as many medicine machines around. I do however make time for rest, I take all my pills with me and I respect the gift that I have been given. I'm grateful for the new opportunities I've been given and the many more to come! I am excited!

For now its back to the grind! Another day gone by, many more to come. Here's to a little rain, slightly less high temperatures, great days, and another breath!

Going on 5 months!

Well can you believe it, almost 5 months on the new lungs! I am still doing wonderful. My latest PFT's were 116%

I have moved back home and am enjoying life very much!

I've established my monthly routine of doctors and lab tests, and daily routine of medicines. Things are going well and really nothing new to report.

I can report that I have been exercising nearly everyday. I walk at least 2 miles a time and am slowly starting to jog more and more. I was at home for my mouse races and amazed mom and dad with how well I could walk and run. I think I outlasted them and the dogs this time.

The mouse races turned out excellent, thanks to all that helped, attended and participated in the event. It was great to see so many supportive people. I'm truly blessed for all the support I received and continue to receive on this journey.

I have been enjoying life, just doing the daily things people do and spending as much time as possible with my son. I've cut the grass and worked in the yard already this year. I cannot tell you how amazing these new lungs are and the ease at which I am able to do anything. The shortness of breathe is gone. The long drawn out coughs, gone! Other news, I am getting ready to start coaching Brayden's t-ball team and am looking forward to the ease to which I will be able to participate with the kids this year. I've also been spending a good amount of time with my girlfriend. Again, just enjoying the blessed life that I have.

Many thanks for all the prayers and support!

Home sweet Home!!

I have made the transition home! The feeling is very Bittersweet, it is good to be getting back to my new "normal" but was tough leaving Mom and Dad. I am glad to be reunited with Brayden and we have spent quite a bit of time together already. I am being cautious as to not to over do it too much, but there is a lot to be done!

The results:

The Bronch from the 15th showed no rejection and just a little bit of infection, which is currently being treated by oral antibiotics. The blood levels, xrays, EKG, and bone density tests all came back fine! The most impressive statistic is my PFTs went from 101% to 111%!!!! Lungs of steel now!

I had a meeting with my transplant coordinator and figured out everything that I need to have done monthly can be done through my local doctor. I have my dentist, eye, blood, family doctor, all setup, working on PFT and XRAY. All results will be reported back to transplant team and any drastic changes will be handled by them and Barnes, smaller infections can be handled by family doctor with approval from transplant team.

I unloaded the packed car, and have slowly gotten things back where they go. I still have some organization to do but all in all things are well. I have been working out at the YMCA and have not quite been able to run on a treadmill, it feels awkward, I have walked some steep variable inclines, building the muscle back up and have been rotating with a stationary bike. The lungs outlast my body all day now, such an amazing switch. The neighbors have a trampoline and I was playing with Brayden and the neighbor kid, and probably jumped for 30 minutes. Vast improvement from that of the pre transplant days. I thought jumping was a great idea at the time, till the next day when I woke up and my legs were sore!! It reminded me of the first time I worked out in Texas and couldn't walk the next day. I am not complaining by any means just incredibly excited. I have been moving a lot more so my ribs are a little sore. Brayden thought it would be a great idea to take a walk one evening last weekend, since it was so nice out so we did that as well. I would say we walked close to 2 miles with Madde and himself and he hung in there the whole time! Walking in talking, the kid can go!

Its very good to be back at my house! Its been an incredible ride, one that I'm sure isn't over yet! Stay tuned and thank you for all the thoughts, prayers and well wishes!

Day 1 of 3-month testing

The blood work, x-ray and pft's all turned out well.

My drug levels are fine. X-ray are fine, and my lungs sounded clear.

My PFT's were the best I've ever had, they registered at FEV1 of 111% The doctor claims that PFT's peak between 3 and 6 months, I'm voting for at least 115% we shall see. I contribute most of the success to being in the gym and working out at the YMCA. I can walk 2.75 miles in 45 minutes now with varying levels of incline. My legs are getting stronger as is the rest of my body.

I have a meeting on Thursday with the my transplant coordinator to discuss the logistics of a possible release. I will not know when I will be released until my bronchoscopy results come back at the end of this week. I have the procedure on the 15th.

Other news, is that last week I had my g-button (feeding tube) removed. The hole has healed up fine and should go pretty close to completely away. My scars are healing up perfectly and hopefully will be even more faint in the coming months. If not, I have battle wounds, but i'm winning!

Stay tuned for Bronch results at the end of the week.

ARB

Its been a while....

Sorry to all my blog fans I failed at a few weeks and boy were they crazy so here ya go...

Week 7

The previous visit to the Ear, Nose and Throat doctor showed that I had pseudomonas and was put on a two week preventative course of IV antibiotics.

Week 8

Pft's dropped to 95% and I had a bronchoscopy. The good news of this week is that I can drive by myself! Small steps right!

Week 9

Pft's back up to 97% and a soon to end course of IV antibiotics

The results of the Bronch showed signs of acute rejection. The severity of this rejection is minimal and treated with 3-day round of IV steroids. The biopsy also showed that I cultured another bug, the bug is treated with a oral antibiotic and the a new 2-week course of IV antibiotics. Just a small set back in the road, if all goes as planned things will bounce back rather quickly. I also found out that I will not be able to return to work until the middle of April. Needless to say this set my mood back, and the high dose of steroid did not help my mood at all.

Week 10

Still doing IVs, almost done!! I developed a rash, so we stopped IVs and all new antibiotics. The rash calmed down slightly and just a severe case of steroid acne!

The greatest news yet! I blew 101% on my PFTs. Now I know most of you are asking how can you blow better than 100%? Well haven't you heard of bonus points! DUH!! ha The predicted value is based on an average for people of the same sex, height and race. Since it is a average and a measurement of the volume of Forced Expiratory Volume in one second (FEV1) and if you blow higher than the predicted then you obviously go higher than 100%

I had a doctors appointment this week and we decided to take my button out, blood draws and xray are only one day a week, and I only have to go to rehab at the hospital one day a week. I still have to do rehab at home and at the YMCA.

My 3-month testing was scheduled for the 14th and 15th of this month. That is my 12-week mark which I should be released to return home to get back in routine so that I can see my boy, exercise and get ready to go back to work.

In summary

A slight bump in the road was hit, I'm feeling very well and exercising better than ever. The acute rejection is treatable and in seems to be in control, we will know if its gone after the next bronchoscopy on Feb 15th.

Things are looking great for a return to Joplin here in the next few weeks! Jump for Joy!

Thanks for all the support!

AB