Tuesday, October 27, 2009

Seven Weeks Out-Regime Info/pics

Well, today is the official seven week mark. I guess at two months, so next week or so, I have to switch to saying I am 2 months out, instead of the weeks.. It is kind of like having a new born, you know those parents that simply have to say how many months their babies are instead of switching to the year because it must make them feel emotional, or like they want to remain a new mom or dad. Example, 'How old is your baby?', "Oh, he is 28 months"..haha..
hope I don't sound like that.

However, I can't believe it is almost 2 months! Well, I still have a week and half left before that, see I am just not ready to believe it yet.

I was a little worn out yesteday, which was monday the 26th. It must have been from going away for the weekend and doing rehab in the morning. It really wiped me out, and it caught up to me a bit. However, I slept good last night from 1-7am (straight), that is an improvement for me. My nightime meds jack me up a bit and it is hard to fall asleep. Today, I really took it easy. Took a nap, did some light walking, but really used it as a day to recover and it feels like it worked. As, I write this I really have just one underlying issue that is preventing me from really feeling like nothing will hold me back. I continue to have a rattling, wheezing, rumbling sounds from my left lung area. This, if you look back through the posts, has been prominent since the first week. I have gotten many answers about what it could be. They range from a small infection right after transplant, ie. some left over congestion and old CF bugs to either a donor mismatch in size, to a minor repurfusion injury. The treatment, since this injury is minor, and they know this because the bronchs, my progress, blood-work, and most importantly X-rays have all been good; is just to have wait and see approach. But it simply is not resolving. Some days are worse then others, and for a few hours it is even gone. But at times throughout the day you can feel these rumblings with your hand and even hear me wheeze. It sounds like I am darth vadar. And it causes me to sound like I am short of breath (even though I am not), and also have an annoying huffing cough. Now, this is nothing compared to pre-transplant. But it is something that now that I am healing I am eager for it to resolve because it is the only thing left that is really holding me back. My new right lung feels like it fits like a glove and breathes freely and beautifully. I am confident my docs will iron it out before I go home...But I need to press this issue, and get it ironed out, literally. When you get a taste of feeling good, you or I just don't want to settle now for anything but perfection, if it is possible.

I thought you all might want to take a peak at what my new medication regime entails. Overwhelming at first, I am slowly getting use to it. The best thing is it is all pills (except for the diabetic shots), but I have been a pill swallower expert since 3 years old! The preparation of sorting all the pills, which I do once a week, takes a bit of time. So below is a few pics of my meds. Hopefully, a few of these will be cut out over time, but I don't mind trading these pills for what I was feeling like before. If this is what it takes to keep these new lungs healthy, so be it...


So, going left to right with the bottles, we have my Tacrolimus-Prograf(anti-rejection/immunosupressent), Cellcept(anti-reject/suppressent), Valcyte (which prevents me from getting virus' and such), Vfend(anti-fungal to get rid of aspergillus), High dose Magnisium (keep minerals and bones healthy), Bactrim antibiotic (this is just a preventitive measure), Prednisone (my favorite-anti-rejection/steriod), High dose Calcium (again for bone health), the box is just Prevacid/Nexium (prevent acid reflux which can damage new airway), and then the little pens on the bottom right are the Insulin pens for shots to manage the diabetes.


Here is just a close-up of my daily pill box. It comes to about 30/day, plus I do have some of my other maintenance CF drugs as well, but that is not too bad. Well, there is a glimpse into my medication regime.

Take it easy everyone!

-Mitch

Sunday, October 25, 2009

Hitting the Gym With Kristen and Rich!

Hello All,

I meant to post this last week. The good news is the delay was caused because we have been out of town and I had no decent internet access. Last week, things were going well and they medically cleared me to travel for the weekend. So, Reba and I jumped on the chance and went to the Boone/Blowing Rock area of NC, for a quick getaway with the boys. It felt so good to get away and the boys really needed a treat from putting up with such a huge transition, living in such a strange place, giving up their friends, school, etc. We had a great time, but that is the next post.

Today's post is about my Rehab process. The below picture is of my two Therapists who are in charge of returning me to my world-class athletic condition! Come on, you all don't remember the day? Well, I don't either. Perhaps my expectations are too high. But, I do hope and intend to return or get into incredible shape with these new lungs. I would like to introduce you all to Kristen Bergenty, PT, DPT and Rich Crooke, PTA. They are two therapists at the UNC Chapel Hill hospital who have been and will continue to work with me until I go home. Kristen's focus and expertise has been in pulmonary rehab and she works with all the pre and post transplant patients. Rich has a background in track and field coaching and can add that additional focus on training and body awareness.



I don't think I have to point out who is who.

Without them, I would not be where I am even today. They have the expertise and have seen just about every type of outcome to know just what I need. They have been easing me into a more aggressive routine to make sure I progress, but don't get hurt or have any set backs. So far, so good. I look forward to going there and getting stronger and building my endurance.

In just 6 weeks, I went from this: My first walk

To This: Leg Pressing 300lbs!!! Just kidding, but lifting weights nonetheless!!
(doctors and clinicians please note: when picture not being taken, I do have my mask on!)


We wear the mask and gloves to protect us from catching any infections as we are immunosuppressed and this is a hospital. My strength and endurance is getting better everyday. My muscles and body still take a lot of time to recover, which means soreness and fatigue, but it lets me know I am improving. I have gained over 10 pounds since the transplant and there is no end in sight to that. I have been eating everything! It is actually kind of annoying, as I am always thinking about what to eat next and what time it is. Mostly because I have to monitor my blood sugar and take insulin, so it is not as easy as just eating all the time. I have to show some discipline and make sure I take the insulin. This diabetic conditon should improve as my medication decreases, but it might not. If it doesn't it is not the end of the world. The insulin shots don't hurt, they are just annoying. So, that is the update for now. Very postive, as I continue to move forward.

Talk to you all soon,

-Mitch

Tuesday, October 20, 2009

Six Weeks Today!-But whose counting?

That's right today is the official six week mark since transplant. Things have been going exceptionally well the last week. I continue to improve my stamina everyday. Today, I started driving again and although I drove some short distances last week (doctors and transplant coordinators ignore the last statement), it felt really good to regain independence. I had a full day today when I got going around 8 and went to breakfast. Then I went to some special off-site building and tried to get a copy of my hospital bill, so I could file some insurance claims. Apparently, it is 170 pages long and they could not print it out from this particular building?? And this was the "special" building, mind you! The person working there also said it was not quite ready yet, to be summarized?? Not sure why, it has been almost a month. Either way, it gave me something to do.

When the boys got home from school, I took Matias to the mall to try and buy him some clothes. He is very particular about clothing and is down to basically one pair of ripped pants as the only thing he will wear. So, it was my turn to try my luck at finding something. He did agree on 3 pairs of pants, lets see if he will wear them.

The point of all this is I did this basically very easily. I was not coughing, not tired, not agitated, and breathing very well. It is amazing how much has changed the last week or so. I go to Rehab again tomorrow and plan on taking some photos and introducing you to my therapists on another post. They are the ones taking charge now and getting me to where I want to be. So, hopefully a more medical and informative post in the next day or so.

-Mitch

Friday, October 16, 2009

3rd scheduled clinic visit- 5 1/2 weeks after transplant!

Wow!! A lot has happened in the last week! So, not sure what exactly it was but right around the 5 week mark, on Tuesday of this past week, I started to turn the proverbial corner... I hope and knock on wood I don't jinx it here. As you all who have been reading know that my body had been aching, tremendously..My back, my muscles, especially my lower body, I was fatigued and not sleeping great, the medications were wreaking havoc on my mood, my breathing (although much better) was frustrating and at times painful. I was always trending upward, but just not 100% confident yet physically and mentally that I was going to be OK. Hard to explain.

Well, on Tuesday afternoon my body just started to feel better. My legs stopped aching. They still are sore and weak, but it is more like I just did a monster leg press workout and they are recuperating. It is not like they don't want to move and can't support me. My back stopped hurting all the time. I still have the nerve stretch injury, but I can see some progress. My mood improved and most importantly I could tolerate things and concentrate better. This has allowed me to spend more quality time with the boys and start to really interact with them again, which I have missed so much. I'm sure Reba appreciates these changes. One of the biggest things is I started to sleep much better! I can relax at night (without medication!). So, the question is why did all of this happen at once?? What changes were made??

Answer- Well, not quite sure, they cut my prednisone a bit a few days before, I have been eating good, I also started to really crack down on my diabetes management (the meds cause me to require insulin and watch my sugar), I started to really focus on this. I have been exercising regularly, I did cut out all pain medication(even though I was taking very little only at night), but there is no concrete answer. Perhaps my body is just adjusting.

Now to remain focused, I still have a long way to go. I have a lot of bruising and sternum pain still along the middle of my chest. But this is bearable. My breathing at times still has a slight wheeze, tightness, and small congestion to it, but this has improved. In fact, it really makes me so excited to see what it will be like once this is gone. So, this brings me to clinic and rehab today..

Again, the doctors say I look great. No signs of any rejection, or infection in the new lungs. Chest x-ray looked great. Dr. Haithcock, my surgeon, checked me over and said it must have been my haircut that caused all these changes! I don't know if he learned that in med-school or not, but I accepted it. One concrete change though was my red blood cell workup was much much better then last week. Hemoglobin, hematocrit levels etc. They were very low last week and were going to give me a boost this week if still low, but they were much higher. So, the docs lowered my prednisone dose again (yeah), and cleared me to drive next week and start some light lifting with my upper body next week. After clinic, it was off to Rehab. Today I walked on a treadmill at a steady pace (2.6-2.8) for 35 minutes straight no breaks! Even threw in some incline in the middle. No problem. I did leg presses with more weight, I did some much more difficult hamstring and core stretching exercises. It was a great session.

I know there might be setbacks, but what I am doing is amazing me! I hope it continues. The photos below were taken tonight when we were walking to dinner and just goofing off. Everyone should take some time to just goof off..... take care and I'll update you all again soon.

-Mitch



Friday, October 9, 2009

Two posts in one day-Must be a good one


Well today I had my second official clinic visit. Lab work, xray, breathing tests, doctors, followed by a rehab session after all that.

It was a successful day. Everything continues to look great. The doctors are all very pleased. The discomfort and secondary issues should continue to improve. Medically, which is the most important, all looks great. They were able to cut down my prednisone dose just a bit, but hopefully it will make a difference.

Rehab went well. Did more cardio then last time and started some strength training on the legs. It was a long day but a good one.

Finally, not for the faint of heart. I am posting a link below to our public Picassa google albums. The photo above is about an hour before they wheeled me back. I posted my complete transplant photos! That's right, Dr. Haithcock my surgeon, let me bring in a disposable camera and he did not hold back when telling whoever the photographer was to snap away. I am giving everyone fair warning to not look, but I want this blog to be educational as well. That is why the photos are on a link below. It is a chronological progression of before, during, and after the procedure. Click the album that says Mitch's Transplant (Warning-Graphic) And enjoy! HAHA

Transplant photos link: http://picasaweb.google.com/rebabowne?feat=email

everyone,
Mitch

Special Thanks

I wanted to write a short blog post to a very few special people that have helped me and the family out tremendously the last month. It goes with out saying that everyone has been so encouraging, optimistic, supportive, and motivating. I sincerely thank everyone. There are just a few people who I really want to recognize personally, if I have not already.

1) Rebecca- Not to many words can describe what she is doing and accomplishing. I am being nursed back to health in a very healthy, determined and motivating manner. She is the one bearing the brunt of my mood swings, complaining, and generalized unpredictable nature. I love her so much.

2) My parents Bill and Gayle- They have and would drop whatever to do whatever we need. Enough said. Without them this would be much more difficult.

3) Rebecca's Mom Lois- She was here the first day. She was genuinely concerned about me and spent time with me alone in the hospital, especially the second week when she did not have to, making sure I was ok.

4) Rebecca's Aunt Lynn- She also came for a visit the second week when I was out of ICU. I was still very uncomfortable and when Rebec, my Mom, or Lois was needed a break from just coming and checking on me she willingly volunteered and helped nurse me back to health for a few days. It was nice to have someone close, but not as related to talk to and get motivational talks from. She did not have to do this but willingly did. thanks.
'
5) Rebecca's best friend Lyzka- She not only started to drive down during the first "dry-run", but when the second call came, she immediately dropped everything and drove down again to be with Rebecca and my parents in the Surgery waiting room. True Friendship. I know Rebecca appreciatted it so much, and so do I.

6) Rebecca's Dad Larry- He has been continuously checking on me and wishing Rebecca and me well. I thank him so much for his support and his generosity. It is helping so much.

7) My brother Terry- He has the tough job of keeping our business running and is doing awesome. I know how stressful and sometimes frustrating it can be, but for me to not worry about work is probably the biggest gift someone can give. Soon, I will be back and we will not look back. Thanks. I love you.

Finally, all the notes, comments, cards, etc. from everyone. A new perspective on life and compassion I have gained.

-Mitch

Thursday, October 8, 2009

1 Month Out Today!

Today marks the one month date after the transplant. I know the blog has gotten a bit slow and mundane as of late.

However, today is a nice accomplishment. I wish I had posts for you all everyday telling you about how incredible I am doing and how I am running, jumping, driving, and just plain skipping along. But the truth is it is a slow moving process from here on out. Alot of people have been mis-informed with my posts when I say I am home! Well, we are home, but it is our second home here in North Carolina. We need to stay here for at least 3 months, and that is if everything goes perfectly.

I continue to improve at a steady level, but those landmarks are just not daily like they were. However, this past week, I continue to do more and more. I go to rehab 3 times a week, and have been able to ride a stationary bike and pseudo stairmaster for up to 20 minutes with resistance and 1-3 short breaks in between. I could not do this before transplant. The weird thing is my muscles are what really keeps me from getting stronger. My legs are so deconditioned as is my upper exteremities (which I can not do any resistive exercise with for another couple weeks, because they broke my sternum). So, there I just stretch. All of these meds prevent muscles from re-building properly so they stay sore and ache consistently.

But I realize I have made huge progress!! I did my rehab the other day and had alot of energy! I took the Chapel Hill free bus service (amazing) from the hospital back to where we live. There Reba is assistant coach of the boys soccer team and practice was still going on, so I walked to the fields and watched the end of practice. It was nice for the other parents to see me moving around and the boys were happy.

So, things are going well. I continue to adjust to the meds. A few more were stopped, a few started, but their was a net loss of meds. In about 2 more weeks they may start to reduce some of the dosages, that would be nice.

Reba and the boys are enjoying it here. We can walk to so much, there is alot to do, and most of it is free. It is such a nice college town. Thanks for all the well-wishes and if anything interesting occurs, I will put it down...


-Mitch

Friday, October 2, 2009

Just What The Doctor Ordered

It just so happened that Ian Ferguson, my longtime CF friend who is 13 years post transplant, had his annual appointment today. So, he came in last night and we went out to dinner. That was just what the Dr. Ordered. I needed to hear from someone how tough it really is the first few months, and really needed that motivational push and encouragement from someone who has been through this.


Ian and I comparing transplant incision scars.


Hello all,

This is Mitch here 3 1/2 weeks after successful lung transplant surgery. I just returned home about an hour ago from my first official clinic visit. Here they drew blood work, did another chest xray, I saw my surgeon Dr. Haithcock, and the Transplant team. It took the whole morning.

The great news is everything with the new lungs appear to be perfect. They are happy with how the chest xray looks, the results of the biopsy from the other day were completely negative for any acute rejection. This is a great sign that my body is slowly starting to accept the transplanted organ, as it is very common for the majority of people to experience some form of acute rejection within the first 3 months, but especially during the first month. They said my lungs looked clearer and the infection and congestion left over from surgery was resolving. So, they took me off of 2 iv antibiotics, and substituted an oral antibiotic instead. I have just 4 more days of some iv meds left and then on tuesday can get that final IV line pulled out of my arm. That will be a relief to not have any foreign tubes or lines in me!

Dr. Haithcock, the surgeon, came in and was very optimistic with me. He assured me all my aches and pains were justified and part of the healing process. Everyone has different complications or experiences and mine are not out of the ordinary. I have what they call a thoracic nerve stretch injury to my right side and arm. This makes my arm weak, ache, tingle, and the major problem is it causes my scapula to be unstable and wing out when I move. However, as much as it bothers me it is something that they say will get better with alot of time and exercise. He explained all my other ailments as part of my healing process which will take months. He removed all of my stitches from the chest tubes as well.

So, Although I am not feeling that great yet, I am very optimistic that everything is going as well as it possibly could. The medications wreak havoc on my mood and mental status throughout the day, sleep is virtually impossible, I still have some wheezing and fluid in my new lungs (but it is getting better), and of course alot of pain from where they broke my sternum. But I get stronger everyday and just need to push on through.

I look forward to progressing further and although each day is a challenge I look forward to it because I hope I will continue to improve.

-Mitch