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"