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

Almost there......

Week 6... going on week 7.


97% can you believe them apples??  That was the result of my last PFT test. I was shooting for 100% but failed after 6 attempts. I have PFTs again tomorrow and will see if I can shatter the 97. 

I am currently finishing my first of two weeks of an IV course to get rid of the cough that I previously had. The IV's and inhaled TOBI seem to be doing the trick. I was able to air my port site (where the needle goes under the tagaderm that keeps it sterile) out today. The weather was bad so my medicine was delayed by a few hours. Now when I go to put my needle back in to resume treatment the site will be less dry and itchy. 

This week I have the normal pulmonary rehab excercise and labs plus additional Doctor appointment and bronchoscopy!  I will have stuff to report later this week and early next week!! Other good news is that after a long hard haul, Apria finally came and took all my oxygen away!! I know mom and dad are glad to have the space in their garage back from the bunches of tanks that were on board.  Here's another step to freedom. 

The snow is nice and white, glad i'm not out in it right now! I have a feeling my son is enjoying it greatly right now! 

Good lungs, OK nose, Bad cough!!!

Catch-up! Last time I had PFTs (the 29th of last December) I blew a 85% which was down from the previous 90%. The reason I believe is because I had a 6-minute walk test and my normal pulmonary rehab, plus the walk from the south campus to the north campus. I also had Brayden all week and he made me tired! However, excuses don't really matter.

The 6-minute walk test mostly used to evaluate how much your oxygen saturation drops over 6-minutes is the basic test used to determine if you need oxygen and if your insurance will pay for the use of oxygen. The last 6-minute walk test I had done was pre-transplant. I was able to walk 800ft on 8 liters of oxygen and that was to get my O2 just to 92%. On my latest 6-minute walk I walked 1700ft, no oxygen and 100% oxygen saturation... Common tell me I'm good now! :-p So I'm a little proud and happy about that!!!

The cough... Somehow I developed some sort of dry cough. Its the oddest thing, just annoying. At least before my coughs were deep and productive and like they were doing something. This cough is like I'm just blowing air with a slight tickle in my throat. I am finishing up my Oral antibiotic from the infection they cultured with the bronchoscopy. I told the pulmonary rehab team about my symptoms since they see me everyday and know when I'm feeling good or something is different and can make the proper call on what the next step should be. So the staff listened to me, and I was clear! Clear and I had a cough, weird. They called my coordinator, and after looking at my x-ray, blood work and other cultures, determined to put me on two more antibiotics. Inhaled Tobi and IV Cefepime. I must admit I was a little disheartened by the new regimen, however, it was only one IV every 12hours and once a day inhaled Tobi!! I can handle that regimen for 2 weeks.

OK nose... While walking to and from the two campuses at Barnes, I noticed a familiar face in the hall and was randomly stopped. My ENT happened to recognize me through my fancy face mask and all. She had not heard that I had my transplant, but was quite ecstatic. I had been wanting to get into her office but was just going to wait till the New Year to call and schedule. Turns out she was holding a mini clinic and wanted to see me to check out my nose again after my 5th sinus surgery. While probing away she took some cultures and a good look around. **side note** what a job looking up peoples nasty noses all day, I don't think i would like to do that but I sure am glad someone does **end** She stated that my nose looks so-so, the frontal sinuses (the ones I have the most trouble with) are inflamed again. The other sinuses look decent with only a little inflammation. After removing a bunch of stuff, she gave me the go to resume nose flushes if it was OK with my Pulmonary team. Pulmonary team says go, so here's to a salty nose.

Otherwise no new news, everything else seems to be going well. Despite the cough I am still able to walk just fine without any breathing problems. I have PFTs tomorrow, another Bronch on the 14th, doctor appointment on the 12th. Life is good!

Until next time...Happy New Year, take a walk a day, its good for the body and mind!!

ARB

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Merry be-lated Christmas!

I hope this finds all well and safe through the first week of the big holiday season. I hope everyone had a wonderful Christmas. I was able to make it to Joplin and see my boy on Christmas Eve and then Christmas Day. I must say he woke up super early and he was so excited he wasn't going to go back to sleep so we just got up and enjoyed our Santa time. Brayden then came back with Mom, Dad, and I. Its been great seeing him. I can't wait to get back to him full time in Joplin. Brayden and Grandma have been enjoying the snow together! I took pictures and will post one or two soon. I hope all have a Happy New Year!!!



The glue is coming off my chest finally! The pain is just about gone and I have 3/4 full range of motion in my twisting, as long as I go slow. Pulmonary rehab is going very well. I am topped out at about 1.5 - 1.6 miles in 30 minutes on the treadmill. I just can't walk any faster. I have started to use the incline on the treadmill which will allow my heart rate to get closer to my target rate of 145 minimum. I feel an in shape Adam here before too long. I am noticing when I don't exercise for just one day! Two more weeks and I will be able to use my upper body to exercise!

I have PFTs on the 29th and no other scheduled appointments besides the normal few labs. I have decreased my prednisone and my taste is starting to come back a little bit. I have been eating like crazy. I need to continue to drink a lot of water, starting to get hard to do. I have this mental block I think on drinking water. I was doing really well but need to get back on track. I guess we all probably need to drink more water in reality but making myself do it is Hard.

God Bless!!!

ARB

Over the River and Through the Woods...

Wednesday is my 4 week anniversary!!! 

Exercise -It won't be long and I'll be running over the river and through the woods.  I am now going to do an exercise bike Tuesday and Thursday and treadmill on Monday, Wednesday and Friday.  I'm currently walking 1.6 miles in 30 minutes. I can't walk much faster so to increase my workout I will have to increase elevation. I biked 4.6 miles in half an hour today. It was a first and my legs are needing some workout.  I still do leg lifts with ankle weights to strengthen them for right now. After six weeks I will be able to do some arm exercises as well.  Saturday I branched out and walked two miles on the treadmill.  I am quite excited that I can exercise with such ease at this point in my life!  If things continue to go well I think I would like to try a 5k somewhere just to say I did it, running distance is not my favorite thing to do! I would much rather play basketball or baseball or kickball or you get the point.

Bronchoscopy -  I had my first bronch last Wednesday. It was a pleasant experience and the team was great. They sedate me lightly and then they numb my throat and vocal cords.  When numb, they insert a probe to look at the stitching in the airways, and the lungs themselves.  On the end of the probe is a small forceps that they use to take small pencil point biopsies. The twelve 12 biopsies are use to determine if rejection is present. The other use of the bronch is to get good sputum cultures from the lungs to see if any infection is present. After the procedure I spent the rest of the day sleeping from the sedation. I did eat good and I'm sure I entertained my mom with my silly talk from the sedation.  The final results show NO rejection!!!!!!!!!!!!!!!!!!!!!!!! I did however culture for an infection that is treatable with oral antibiotics, another pill to the regimen for two weeks (no biggie)!

PFTs - Pulmonary Function Test, the test used to determine how well a person lungs are tested by blowing in a machine and measuring different value! See PFT description and variables I now have to blow PFTs every week until 12 weeks and then once a month. As posted before my FEV1 from my first PFT was 72%, the following week 76%, and this week it reached a whopping 90%. I have not been at that level in several years, so here's to hoping I get to 100 and stay there for a while!!  I am super stoked about the results.

Other Mentionables -

• Thanks to Karen Meyers for the nice write up in the Missourian (see link)
• Not culturing for fungus, so I get to drop two pills
• Even though Mom and I spend all day together we still have not killed each other
• I had an excellent weekend with Brayden, and get to see him this Christmas weekend
• I get to stop doing my nebulizer treatments all together
• I get to send my oxygen back to Apria
• My x-rays continue to look well
• I am still thankful to the Lord for everyday he continues to give me
• I appreciate all the thoughts and prayers coming my way
• I can sleep on my side for small amounts at a time
• I am not as sore,  I can feel the muscle and cuts healing up
• I want to encourage Organ Donation as much as possible

Merry Christmas to ALL, God bless you and keep you safe this weekend,

AB

CF gone????

Many have asked if the lung transplant cures CF. The answer is no but here is the description from the CFF.


Once the person has received a lung transplant, does CF "go away?"
Transplanted lungs come from people who do not have CF, so the new lungs do not have CF. However, after the transplant, the recipient still has CF in the sinuses, pancreas, intestines, sweat glands, and reproductive tract. The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa and Burkholderia cepacia (B. cepacia ). These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation when immunosuppressive drugs are given at the highest doses so the body will not reject the new lungs. However, these drugs also make it hard for the body to fight infections, which can lead to lung disease.
Taken from http://www.cff.org/treatments/LungTransplantation


So what does this mean?? I don't have my therapy vest or any of my breathing treatments, inhalers, oxygen, or bi-pap machine. This frees up several hours a day for me and allows me to pack a lot lighter and keep less amounts of medicine on board. It means new medicines, I now have to take about 6 new medicines in pill form to cover my immunosuppressive drugs and antivirals. I still have to take insulin and all my pills with meals to help digest my food.

Good news of the weekend? I saw Brayden, for the first time in 3-weeks, and we had a great visit. I walked outside one day for a little and did some hills. Today was too darn cold to do anything outside, so I took pictures of Brayden playing with Grandpa in the snow.

I was able to sleep (in small amounts) on my side again, giving my back a slight break.

I saw an old friend while taking Brayden (not me driving yet) back to his mom.


Things coming up this week:

My first Bronchoscopy... they are going to make sure the lungs are healing up properly on the inside and takes some biopsies of the lung to make sure there are no signs of rejection.

I have 2 x-rays, 2 lab draws, another PFT (pulmonary function test) and pulmonary rehab. At the end of last week I was walking 1.5 miles in a day. Have to see what happens this week!!!

Oh yea, received my shipment of cookies and pretzels, ummm ummmmm, good!

Thanks for reading and stay tuned!

AB

That Blow...

72% up from 19% FEV1 - What you ask? That is my last blow (Pulmonary Function Test) with my old lungs and my first blow with my new lungs. These new puppies are working.

I feel amazing. I also feel tired, sore and ready to get back to real life. I know, I know, I need to keep taking it slow and recovery and I will. I am just so thankful that I was able to receive this miracle.

Drive...Excercise...Drive...Nap...Eat all night...Sleep and do it again, mixed in with some Dr. appointment and labs. The other great part is the amount of time I save by not having to do so many breathing treatments. Instead I take a handful of pills twice a day and some insulin.

Nurse Mom has been excellent. I'm waiting for the day when all the responsibility assumes back to me, but until then I will continue to enjoy the support she is giving me. I couldn't have asked for better parents for this whole journey.

The rest of this week will be routine. Next week will be PFTs, Bronchoscopy (my first ever), and more therapy.

Thanks for all your continued thoughts and prayers.  I am slowly getting back to the internet, stay tuned!!

AB

Home Sweet Home!

It's good to be home and sleeping in a familiar bed. I've taken residence in my old room and have the place to myself and slowly getting things adjusted for me. It's tough moving, lifting, bending or getting into certain positions as I'm feeling the affects of the radical surgery more and more as I'm only getting oral pain med's. You can sure get used to having an epidural and the "good stuff" but I have to get busy and get past the healing phases so I can get busy with my life.

The past couple days have been very busy working with the local pharmacies to get all my antibiotics and rejection medications...I've had a lot of drugs before but this is a whole new learning curve...can you spell and say, "immunosuppressive drugs" three times, real fast?

I've also started my rehab therapy at Barnes, spending time with the nurses, post op coordinators, respiratory and physical therapists, all monitoring my blood cells, breathing, temp, strength, range of motion, speed, and stamina.  I'm able to walk a half mile at a time and my OXYGEN SATURATIONS ARE REMAINING AT 98% - 99%, which is truly amazing. I've not seen these good numbers in a long, long time.  I'm feeling a bit sore, all over, as I think it's from using my muscles again.  The past few years most of my muscle use was for breathing and all of the severe coughing I was doing...what a transition. So, that's why they have me on a regulated therapy plan and will help me get my body in better shape and monitor my blood counts and look for any signs of rejection, which is something we will have to do for the remainder of my life, as most tranplant recipients know.

FYI...I am enjoying the cards, letters, emails, and posts...just don't have the energy or feel like spending any time on the computer, yet.  I am still napping and trying to adjust to the new meds...ever heard of "SIDE EFFECTS" of immunosuppressive drugs?  Just ask my parents...they can tell you, I'm sure. God bless them...they've been through a lot lately, too.

I'm looking forward to a nice, quiet, relaxing weekend with my parents and perhaps we can get caught up with some emails, letters and thank you's...but, don't hold your breath. As far as visitors go, we're taking it slow and have to be careful not to be around anyone that's had, or been exposed to, colds, flu's, bad bugs, or anything suspicious. It's tough to do, but just taking as many precautions as possible.

OK, time for a nap before I have to travel to Barnes for more PT today...

Mom!  Have you seen my blood sugar level test kit, pulse-oxymeter, nebulizer/compressor, insulin syringes and ice water?  I think I left it in my room...can you get it for me?  Are you serious? Ok, if I have to.

This is it!

At 9:00pm tonight it will be exactly one week ago that I received my new lungs.

I'm being discharged today...orders are written, meeting with the Pharmacist after lunch and I'm out of here.  So long hospital, no offense intended!  I want some home cooking and to sleep in my own bed...I want to see my son, Brayden.

I am so thankful to have this new lease on life and to be able to breathe again.  I have so many people to thank:  the medical teams, doctors, nurses, housekeepers, transporters, aids, dieticians, food service, respitory & physical therapists, x-ray technicians, and all of my family and friends. 

I especially want to thank my maker and Father in heaven...I've been praying, a lot, as many of you have, and feel this gift is truly, a special gift from God.  Words can not explain how I feel.  I also want to think that my brother, Jake, had a lot to do with this. He's up there looking over me and putting in the good word.  I can only imagine he won a poker tournament and the "pay out"deal was to speed up the transplant process for his brother, me.

I want everyone to know I am so grateful for your cards, well wishes, contributions, offers of support, thoughts and all of the prayers that were so successful in my expedient surgical and healing process...what a week this has been.  I think the Doc's in Barnes are all amazed, too.  Hey, maybe they'll ask me to be a transpant consultant?

I will be residing with my parents for the interim time as I recover and until I have clearance to lift, drive, and/or work.  I do have to be very careful with the visitors and any infection items. So, I am asking that anyone considering a visit to please call the house ahead of time to check with me on my therapy schedules and any other health related issues.  I do want to see everyone...it's just going to take a little more time.

I now have 3 months of post operative therapy, both pulmonary and phsysical, at Barnes Hospital. Mom and I will be making daily jaunts to St. Louis.  The transplant team will continue to monitor my progress, watch for signs of infections, and monitor for organ rejection using various techniques to ensure the safety and well being of my new lungs.

It's still a long, uphill battle, but at least I can breath freely, and I don't have all of the debilitating and persistant coughing that I experience the last 26 years.  And, I'm confident I'll be up and running around like I used to, can't wait to play a game of soccer with my son.

Again, thank you, God!

Much Love,

Adam R. Brockmiller
AKA - "The New Man"

More Accomplishments

Tuesday, November 30, 2010, Post Op Day 6

8:00am Remaining chest tubes removed.  Yes!

Nap time, I'm  beat.

More exercising...walking, steps, treadmill.

Arm exercises: up, down, up, down, up, down.

Nap time, I'm beat.

OK...Education time. Let's learn about all the antibiotics and rejection medications, doses and side effects.

Nap time, I'm beat.

OK, time to get up and  do some physical therapy.

I set another record today...walked more than half a mile and was not out of breath, amazed myself. Just another milestone I need to reach to get out of here, shouldn't be long before I get the discharge orders. It's still hard to believe that this time, last week, I could barely stand long enough to take a shower, and had to rest 2-3 hours afterwards due to the exertion.  My what a difference a new pair of lungs can make.

BM...oh yea, baby!

Boot Camp for Transplant Recruits

I'm sorry I didn't update my blog earlier, but the powers to be around here have kept me very busy.  It seems once you get out of "The Unit" you're treated just like any other patient, sort of like Boot Camp for transplant recruits.

Here's what happened today.

Up at the crack of dawn this morning to get ready for PT, that's Physical Training.  My DI (Drill Instructor) came in my room turning on all the lights and kicking all the trash cans to scare me. Believe it or not, I had to kick my slippers off and put my walking shoes on. Then the DI, I mean physical therapist,  made me load up my IV pole with my chest tube containers and march up and down the halls, no rest, no breaks, no snacks and worst of all no naps.

Then it was up to the PT room for steps and stairwell training. It felt like I climbed about 10 stories worth of steps, but was about 14 total if I recall correctly.  Still no breaks, rests, snacks or naps. I'm told I need to be able to do steps if I want to go home.

OK, now it's back to my barracks for another physical. The Doc's came in and gave me the once over, again. I had another set of X-rays to check my lungs...they all look good, nothing to report here, keep up the good work.  They say I'll be getting out of here if I keep doing what I'm doing...it's just another day in boot camp.

It seems I'm doing well enough they don't need to monitor all my heart and lung blood pressurres, so I can now have my A-Lines removed...that's Arterial Lines for you non-com's, had three of them total. The femoral A-line was removed the second day after surgery. Today they removed the A-lines that were in my neck and wrist...ah, that sure feels better, thank you very much, may I please have another. I now have more freedom and flexibility, makes for easier moving around from my bunk, to the deck, to the latrine.

Hey, how about these chest tubes!  The Medical Officers are checking on that now. Oh, still oozing and need to keep them in for a bit longer. OK, guess I'm not in a position to argue that one, we will keep them in for awhile longer. It seems it's smarter to keep them in and help drain the extra fluids out...beats having to reinstall new tubes later...Ouch!

Well it's a good thing I have my Porta-Cath, we'll just access it for the remainder of my IV antibiotics. I've had the "port" for about 8 years now and it's still working well.  This is the normal method I use for most of my IV antibiotics for the many "CF Tune Ups" I've had in past years. I'll (hopefully) only use this in the future for antibiotics in the event some infections flare up.

Uh oh, now they say the epidural can come out too...that means I'll have to toughen up a bit and handle the pain with oral medicines.  Hey, I can handle that, should be a piece of cake since I've been swallowing pills and capsules since I was 3 years old.  I remember taking about 20 pills a day back then...it's up a bit now, around 30 a day, and I'm doing insulin shots on top of it, due to my CF related Diabetes.

Wow, this is nice, feels like I've lost about 80 lbs of gear and attachments, should make it much easier to get around the hallways without all the extra hardware. I should be able to walk further and with quicker times.

Ok, PT's back, now it's time for the treadmill, let's just see what kind of stamina we have now.  Hey, not bad, just walked .25 miles in about 18 minutes...that's pretty good, I think. I bet I can do it again, later.

Well, finally, time for some Benedryl and my IV meds...guess I'll take a nap and hopefully my food tray will be delivered jus tbefore I wake up.

Oh, the life of a transplant recruit...hope I get to write home soon! Mom, send more snacks and money so I can wak down to the cafeteria and buy some pretzels.

Over and Out!

Moving to My Private Room

Good news to report!

I worked hard today walking and exercising and my body's healing quite nicely. So as a nice reward for all my efforts I've been granted a room on "the floor" and I'm out of the OU, or Obersvation Unit.  Sorry, all of my dear old friends with thoracic issues, but I've got new lungs and I'm going to keep on advancing until I get myself out of this hospital and back home.  No hard feelings, but my outlook is "full speed ahead" and I'm not going to look back, at all. I'm moving to Rm 7108 in Queeny Tower.

Since I'm on quaranteen orders I'm fortunate that they will keep me in a room to myself and not be sharing with others. It's nice having the room, I'm actually spoiled from having such nice rooms up on the 13th floor of Quenny Tower.  Everyone that enters my room must gown up and wear gloves to protect me. If I leave the room for my walk and exercise I have to wear protection and a mask...don't want to pick up any bad germs.

I've got a phone in my room but I'm normally too tired to talk today, maybe in the next few days I'll have mom get my cell phone and laptop for me. I wear myself out sitting, walking and doing my new arm exercises, sure will be nice when I can do these and have more strength. They tell me the more exercise I do the faster I'll get my renewed strength and I'll be running a 10K in no time.  Ha, can't imagine that because I haven't been able to run since baseball season ended in High School.  I sure am enjoying these lungs...best thing that has happened to me in a long, long time.

Well, I need another nap, then I'm going to redecorate my room and get it set up just the way I like it.  Hmmm, I can't find any graham crackers around here, better hit the "Nurse button."

Little Hiccups

Good Morning World!

I slept great, have my pain managment regiment going well.  It is still hard to believe that four days ago I was wondering how I was going to catch my breath between coughing up so much mucus.

I had a a nice breakfast in bed...drank lots of cranberry juice and now I have these annoying little hiccups.

It's so wonderful to breathe...and I'm almost on room air, they plan to wean me off the oxygen today. I think Physical Therapy is coming soon. Hey, gotta go, time to take another 1000' hike on level ground, but looks like they have an obstacle course set up, I see carts, trays, cleaning buckets, and X-ray equiment staged for me to manuever around.  No problem, I can get my 5 wheeler IV pole around those with no problem.

Wow, we're actually doing this on room air, no oxygen tank hissing away now. I'm walking a good clip, monitors show I'm Sat'ing about 97% - 98% and have the green light to keep going.  Hey, these new lungs are great, I'm going for the land speed record today...that's about .45mph.  OK, time to turn around and see if I can make it back without running out of fuel, feels like my gas tank might be low...sure could use some more graham crackers.

Good news!  I'm doing so well with my chest tube drainage they are going to remove 2 of my 4 chest tubes. That should be interesting...here's the Dr. now, let you know how that goes in a minute.

Hey, not bad at all, I thought it would be worse than that, but a piece of cake, actually.  I have 2 chest tubes close to my belly button that just came out...removed some tape, snipped some sutures and they just slid right out.  Oh get this, I was "pre-sutured" and all the Dr. had to do was put a few knots in and my tube wounds are all stiched up now.  Once the oozing slows down a bit more I'll get the other 2 tubes removed.

Oh, also talk going on around here about me moving to a regular room, just down the hall. It's been crowded and noisy around the OU...I'm ready to get away from all the commotion and have some privacy...been seeing way to much of everyone, if you know what I mean?

Mom and dad are here now, going to take a break from my routine and see what's going on in the world outside.

Well, good to hear everyone is so excited about my health and are still praying for my recovery. You know, it's so hard for me to believe I had a lung transplant 4 days ago. Hey mom, did you bring my cell phone? Can I have it?  Wow, what are all of these messages, HOLY COW! This is crazy, I can't believe it.  Mom, did you bring my charger, too?

I'm hungry, would you see if they have any bundles of graham crackers? Oh, would you get me some pretzels, too.  Hey dad, would you get me some diet Pepsi, oh and get me another bucket of ice water, this one's empty.  Ohhhh, Mom, would you see if they have a potty I can use? OK, got all of that nasty stuff out of the way, now it's time to get in my bed and eat some snacks.

This is awesome, I can't believe so many people have posted on my blog and my Facebook wall. 

I'm feeling OK now, just trying to read some of them but really don't have the energy to answer any messages or do much online now...maybe later tomorrow or the next day I'll have a bit more strenght. I need to walk again soon, so better keep some fuel for that.  Uh oh, here come's Physical Therapy again, I think they want to see me lifting my arms up over my head and moving them around so I don't get locked in one position, or something like that....Oh, just want to make sure my incissions don't hurt too much and you want me moving my arms to help keep my chest so its not so tight and help my lungs expand, I get it. Oh a one, and two, and three, and four...ouch, that hurts a bit.

Somebody Pinch Me - - -

Wow, am I dreaming or what? It must be the pain medication and the epidural or a combination of both.  Will somebody pinch me? I must be dreaming. I'm in and out of it all day...and guess what, just found out I'm not updating my own blog, my dad is. He's trying to help me keep up with what's going on, but I'm so worn out from my walking I'm not seeing straight.

I'm acutally feeling pretty good. You won't believe this but my oxygen sat's have been around 99% - 100% all day on just 2 liters of oxygen and my respiration is around 15 - 20 per minute. Man, I haven't seen numbers like this in years. It feels SO GOOD to breathe.

Oh, something else happened today...I had something in my throat and I actually had a hard time coughing...doesn't that sound funny? Imagine, me having a hard time coughing?  Well, I think it has something to do with the epideral and the fact that my chest was recently cut and pried open to remove the old lungs and install the new lungs. It sure was a challenge, but I finally coughed that little annoying "whatever it was" out of my throat.  Whew! I'm tired again.

It's 4:00pm and I'm getting very restless...I think I'm going to go for a walk.  Hey dad, would you go find out if I can take a walk down the hallways?  It's OK...I have clearance from the keepers of the OU to take off.  Hey, will somebody help me with all these monitor cables, tubes, IV poles, and oxygen tank?  OK, we're all disconnected from the monitors and I have my chest tube containers termporarily mounted on my IV pole and we are MOBILE. Let's go!  Hey, guess what, I can push my own IV pole and I'm moving down the hallway.  Let's see where this leads...another hallway, let's go right and see where this goes...wow, another hallyway, this hospital is huge....OK, going down this one and we're back were we started. 

Overall I just walked another 1000 feet and I feel pretty good, think I'll go for another round.  I think I remember where I was, let's go over the same pattern and then it should be time to eat back in my "Open Air" room with 12 other patients. Well, there you have it, another 1000 foot walk, put me down for 3 long walks today.  Whew!  I'm pooped out and can barely keep my eyes open, but think I will call Brayden and see what he's been up to all day. I could barely talk, I was so tired, think I'll take a mini-nap until my tray arrives.

It's dinner time and I'm going to eat everything on my plate...except the broccoli, yuch! 

What's that? Oh, my nurse is going to give me my benedryl before my meds, guess I'm going to take another nap and will hopefully sleep through most of the night while they run my anti-rejection medications. I must be dreaming...can't believe I have such good lungs and can readily breathe again.  It feels so good to breathe without coughing...good night!