Monday, January 25, 2010

How are you doing.....

Let me start out by saying (unlike Carley Simon's song....which I think really is....) this post is not about any of you, it is most certainly about me.

I have to say that the question in my subject line drives me up a fucking wall. To explain why such an innocuous comment would drive me to profanity (like it takes much) I need to give some background information about me. First of all I hate to lie and really don't like those who do. Second I strive in life to be happy and make others happy. If you put these two edicts of mine together and couple them with my subject line they are unfortunately at odds.

See the real answer is I'm not doing well, not at all and I know my friends and family wish I were. The truth is I don't even want to wake up in the morning, not because I don't want to live but because its really hard to do so. The truth is hard to hear and I don't like having to tell people so I say as good as can be expected, or making due...getting by....etc..

See the truth is....right now the best moment of my day is the brief seconds right after waking up; just before my first attempt to breath in, when my breath is still shallow and I have not yet moved. In that moment there is no coughing, there is no muscle ache, no pressure and pain in my head. In that moment all is fine and I am good, and I try to hold onto that moment for as long as I can each day. Because the truth is it's all down hill from there. Once I start to move the clearing coughs begin followed by the deeper coughs, the muscle starts to ache, the head pressure begins, the gurgle and rattle of my chest begins its haunting melody. These days I can't even get up in the night to go to the bathroom without it being a major deal with the coughing and gasping. Hell I don't even like to roll over in bed because the coughing starts and it will wake up poor Denise who is just trying to get some sleep before work. And have I mentioned I have a damn O2 tube hanging out of my nose all the time that keeps getting caught on things!

But the question pisses me off the most because I hate that my main characteristic right now has to do with health or more precisely my lungs and CF. I have accomplished so much in both in my personal and professional lives that I am proud of despite or maybe in spite of my CF. Pretty much everything and anything I have ever set my mind to I have seen through. Over the years I have developed a breadth of knowledge in sports, exercise, psychology, nutrition, bodybuilding, design, engineering, manufacturing, computing, continuous improvement, government, health care, the list goes on and on (well not too much farther really...) but right now none of that matters. Now when people call we are more likely to talk about my health than to discuss other issues and its obviously on my mind more than anything else anyway. It sucks to let people know that this disease is sucking all the real joy out of my life, that my body is really failing me now.

So I'm sure it's no big surprise to anyone that I have unfortunately been becoming more and more withdrawn, and I know it's not good. I know People showing their concern for me is a good thing and a testament to the life I have led. So I'm putting this out there so you all understand a little more of what's going on in my mind and to explain why I may not have answered the phone or called you back right away and to say I'm going to try and do better.

We are one week away from the transplant evaluation now and it will be great to get that behind us.....

See I told you it was about me....LOL

Wednesday, January 20, 2010

Wednesday already....

Man time flies when your having fun....or well...time flies, lets leave it at that...

The temperature here in Bethlehem has finally gotten out of the lung rupturing 20s and even touched the 40's for a few days. I took advantage of this break in the weather by going into the campaign office for a few meetings to catch up on things on Friday, out to Starbucks for coffee with friends on Saturday morning (Thanks Denise, Shannon and Barb!) and out to the Promenade Shops for a walk on Monday with Denise. My trips were very short, but it was great being out never the less. I was even able to walk the length of the mall slowly (with the oxygen on), so that was really nice. Plus I had a chance to get a white Mocha each time I was out, that is my little treat to myself for the effort.

The last few days have been spent mostly reading everything I can find about lung transplants and preparing for the fast approaching evaluation. I'm in crash course mode to learn about lung transplants, goal is to know as much as the Dr does....LOL...(those that know me know I'm only half kidding)

I thought people may be interested in the Agenda for the evaluation. The event should be quite informative I'm sure.

Tuesday Feb 2:

8:15 Arrive at Penn
Bloodwork & Drop off Urine (24 hour specimen)...Yes that's right 24 hours of urine baby!

9:00 Social Work Consult

9:30 Introduction to research

10:00 Nutritional Consultation

10:30 Transplant Finance Consultation

11:00 Lung Transplant Education Session


1:00 Pulmonary Rehabilitation session

2:00 Ventilation/Perfusion Scan

3:00 Echocardiogram and Electocardiagram

Wednesday Feb 3:

9:00 Dexa Scan, Chest CT Scan and Chest X-Ray


1:00 Pulmonary Function Test with Arterial Blood Gas (OUCH!!!)......Hate blood gasses

Thurday Feb 4:

6:45 am Cardiac Catherization....I will be sedated for this, then have to lay for several hours after before I can go home. Good news is the car ride back to Bethlehem is not an issue, I just can't drive.

Then on Feb 23rd:

9:00 Barium Swallow

10:30 Follow up appointment to review results of evaluation and recommendations.

We had a room booked at Penn Towers for the three nights, but after speaking with a few people have decided to cancel and go to another hotel. Apparently there are a few recently renovated full service hotels nearby for an equivalent price. For a $175 a night one should expect a little comfort. And for anyone reading and planning on robbing our house while we are gone, we have pet sitters coming to the house, oh and Dharma bites....

Other open issues are what to do with my CF related Diabetes over this time. and what to do about vacation....

I'm waiting to hear back from the Endocrinologist about how to handle my Diabetes during the fasting prior to tests. Since I have an insulin pump that continually pumps insulin into me to help manage my blood sugars, and I can't eat prior to some of the tests, my sugar level would keep dropping without further intervention. So I'm sure I will have to disconnect the pump and watch my sugar level, it's just a matter of when.

Another issue is on the 23rd I had hoped to be in Florida! I'm going to talk to the doctors and see if I can move the appointment ahead or not. If the potential outcome of this appointment is officially being listed, no way am I going to miss it. Other thought is potential position on list, I can't very well be in Florida if a call can occur. I find it hard to believe that it would happen so quick even if I do get listed right away, but who knows. We will get some clarification on this, but I hope not to miss my little respite in the sun.

An interesting tid bit......I was trying to look at the variables for listing (Lung Allocation Score, I will write about this more on a later date) and Since I do not know my blood type I did some checking. Since my dad is B+ and my mom is A+ I can be A, B, AB or basically anything....LOL....this was no help at all....just going to have to wait to be typed.

On a sad note, I can't believe the Democrats lost Kennedy's seat to someone so against health care reform and the super majority along with it. There is some serious irony there.....Since Massachusetts already obtained health care reform in 2006, they basically said we got ours....fuck you the rest of America (much like many on SS are saying). Being a person with a BIG pre-existing condition, this really upsets me. The plan going through the house now is by no means what I wanted, but it certainly is a good base to work from. I currently have a primary and a secondary insurance plan, and still am very concerned with the coverage needed for this life saving transplant. It's terrible that in this country of plenty that people are so greedy and self centered as to keep others from having the same care they have and withholding medicine and needed surgeries.

Thursday, January 14, 2010

Don't burn the pig...

I actually got out of the house yesterday, took my sweet M3 for a nice ride. It was my first time out of the house in a week. My medical supplies company (Homestar) called and said they had my lancets in for me to pick up. For those of you who don’t know lancets are the little needles that poke a hole in your finger to check your blood sugar. I have to check my blood before each time I eat to determine how much insulin is needed to cover the sugars I’m consuming. Since the temperature outside was actually above freezing for a change I figured it safe to go out and explore the outside world a little. I stopped for my favorite Starbucks drink (triple venti whole milk white mocha), picked up my supplies and since I was already out, proceeded to drive around for a few hours. It was really nice to be out and about for a little while and it not being so bitterly cold.

A little shout out to my mom here about diabetic supplies, she always tells people with the medical insurance to get them through a durable goods supplier as they are covered that way and you don’t have to pay out of pocket, thank you mom for the budget saving tip. So now back to the blog….

Well I am finally feeling a little better. I had been feeling off (more junk in lungs and short of breath) since mid last week and of course started an antibiotic to try and keep things from progressing. My weight after a brief rise has dropped right back to where it was. It seems my body just likes to be 150 pounds. The good news is that for my height (5’-9”), a weight of 150 pounds gives me a body mass index of 22 solidly in the acceptable range for transplant. I prefer to be around 160 simply because when I get sick I drop weight like a stone and if I don’t have the stores to pull from I just keep getting skinnier. My mom and Richard have been sending over some tasty food to help me out. Great soup and cheesecake!

Over the weekend we took down the Christmas decorations or more so Denise did. I did help a little at first, but really over did it when trying to take apart the tree. I got winded coughed some and then went into one of my jags where I literally can’t get in enough air. My oxygen saturation went so low I was teetering on passing out. I sat there gasping for air, even though my oxygen was on full blast I was in and out for a few minutes. This is very scary when it happens and not good for me at all I know. It’s really tough when the mind wants to do something and the body just can’t keep up with it all. I’m a guy who just wants to dive in and get things done and I just can’t anymore, pisses me off really. So I was feeling the ramifications of my actions for a few days after, but seem no worse for the wear now. In a case of perfect timing Denise had just called her brother Dave to cover for my weak ass in taking apart the tree, when her mom and dad showed up. So the short of it was Pop Pop helped pull the tree apart (I did hold the base, much to the chagrin of everyone….thank you very much…LOL). So now my beloved Christmas decorations are down and I do miss them. Being from the Christmas City (Bethlehem Pa.) coupled with a mom who always made the holidays really special made me love Christmas and always miss it when it’s done.

Last night was our Godson Johnny’s birthday, so we went over to see the Callahan crew and give our love. Being the first day out for me in awhile it was really nice. I don’t mind being cooped up, really I don’t, but it was a nice change of pace to be around all the activity and good people.

On the campaign side things are going really well, Congressmen Dent is going to be amazed at what the fledgling campaign has been able to do this quarter, as well as what we have planned for him over the next ten months. It will also be very interesting to see how he handles the tea party candidate that he now has to face in the primary. No more pretending to be one thing here at home and then going and voting completely different in DC. He is now going to be held accountable for his actions and really more to the point, lack of action.

And for those of you who took the time to read the whole post the title line is from the Dave Mathews song titled Pig….

We need the light of love in here
Don't beat your head
Dry your eyes
Let the love in there
There are bad times
But that's ok
Just look for love in it
Don't burn the day away…

Friday, January 8, 2010

What is happiness?

The other night I caught parts of a show Denise was watching on PBS called This Emotional Life: rethinking happiness, it was quite interesting and as titled did get me thinking. I did not agree with all that was said (I more believe we derive our own happiness from within and should not be so reliant on others for it), but it certainly did make some good points. The point is….we all need to think more about happiness and what it means to us. We should think more about what each of us can do to first make ourselves happy and then in turn to help those around us to find some joy in their days. It’s so easy to get caught up in the day to day grind and lose track of what it’s all for, what life is all about. Life should be about being happy and making others happy. Now I don’t think any sane person is happy all the time, but many of us have very little real joy in life. I for one have and continue to face huge challenges every day and as most would attest do a pretty good job of remaining happy and positive. It always amazes me how many people are truly miserable with their daily existence yet feel powerless to do anything about it. Hint….you can change many things in order to lead a better existence….really you can, trust me.

I have to say through the past year so many people have shown such love and caring for me that it’s almost overwhelming. The emails, cards and posts mean the world to me. I’m not the best at accepting emotional outpouring (I have been called the tin man and part Vulcan over the years….LOL) as I am more analytical than emotional and at times use humor to mask it all. So, I want to take a moment and whole heartily thank you all for the joy you have and continue to bring me in my life and hope I can over time return in kind. As my friend Chris said if it makes it easier for me to accept the help I’m going to need, he will keep a list and make sure I repay…LOL, now that’s a friend that gets me.

Now on the health front, yesterday I received my schedule for my three day evaluation appointment. It looks like two solid action packed days of meeting with near a dozen people and getting every orifice poked and prodded, followed by a third day where they decide to make their own holes and probe even further. All I can say is it should be an interesting few days. Which is really the way I’m looking at all of this, it’s an experience and one I’m hoping to come out of better than I went in. After all, life is not only about a destination. If we focus too much on where we want to be, we lose what we currently have. I for one have a lot of living to do before the big transplant event. It may not be action packed due to my health limitations but I guarantee it will be fun one way or another. My life will certainly be different after transplant and hopefully rewarding in different ways, but there is still tons of time to enjoy before the big day also.

Tuesday, January 5, 2010

The great Wii experiment of 2010

Well I hope everyone is having a great year so far. What!? It’s been five whole days already, no read on the year yet?...LOL...

The New Year is a great time to pause and take a good look around. I don't believe in resolutions per say as I feel they are a set up for failure, but do think the New Year is a great chance to see how you’re doing against your own expectations. This is a big point here; not friends, family or societies expectations for you, but an honest evaluation of YOUR thoughts of where you are and where you want to be in life.

This time of year provides a natural break and is as good a point in time as any to establish some short and long term goals that will help to keep things moving in the right direction (I stress again whatever that means to you individually). If you have your goals written down from year to year it's also a good time to look back at what you have from years past and see where you diverged from the plan. You can also re-evaluate if the things that mattered to you before still hold the same value to you today. For example; I always had a large amount of career oriented goals in my list that in all honesty do not mean shit to me anymore. A career may again someday rank high on my list of goals, but for now it’s mostly health related and relationship oriented needs that bubble to the top. See over the next few months I’m going to have to quickly get my affairs in order. In February I go for the evaluation for transplant and could within two weeks from then actually be listed for the double lung transplant. Once listed the wait could be days or years and so I will have to make sure everything in my life is ready for whatever comes next. So this year it’s about getting; the finances straight (and understandable to Denise), the home in order both here in Bethlehem and wherever we will stay post transplant, the will up to date (nothing is so selfish as to not prepare for what could come) and my body in as good a shape as I can to prepare for the grueling surgery.

Which leads me to my subject line, Denise bought a Wii console over the weekend!

Having been a bodybuilder and avid weightlifter for most of my life it should come as no surprise I love to work out. Problem is that right now it’s near impossible to do so. The way things are now I can barely move enough air to get around the house let alone lift any weights. So since I can’t do what I like to do the Wii is a great way to get some low impact activity and have fun doing so. The games are structured so that you can play and lose track of the fact that it’s actually working you out some or at least getting the body moving around some. I was able to do it for a little while before having to sit back and watch, but it was really fun. Our Niece Amanda even came over and was enjoying getting all the high scores.

I doubt it will make me look like this again, but it’s a good start.

Friday, January 1, 2010

Happy New Year!

Well 2009 is in the books, and I must say....thank you! This year was officially the worst year of my life. The year started off with the best promise but never did fully deliver for me. Being the total optimist I am this let down comes as quite a surprise. Looking back, this year took more from me than any other to date. For the new people in my life in late February while vacationing in Florida I got quite ill. I was as usual looking forward to this yearly trip since its so nice to get out of the nasty Pennsylvania winter weather and into the Florida sun for a few weeks every year. Its also a great opportunity to go to kick off summer by catching a few Spring Training games (I'm a baseball nut). This year though, during the second week of our stay I was feeling so bad that it was a huge effort even to leave the condo let alone do anything. We even called the airlines to see about flying out early so I could get home and mend. When we did finally get home the rest of the year has consisted of; hospital stays, home IVs, the experience of desensitization to an antibiotic in ICU, the need to now be on Oxygen, retirement from work, social security and last but not least the need for a double lung transplant. The three types of pneumonia and a staph infection I cultured have taken a huge percent of my lung capacity away leaving me with only 28% to go. The loss of capacity and freedom have really turned my life on end. Lucky for me I had a good job with Air Products and have a long term disability policy that pays 70% of my salary or we would really be screwed.

There was good this year too of course, we did get part of a good week in Florida and a trip to the Outer Banks in NC with the dogs, the yanks did win the series and I did after all get a wonderful BMW M3 for my 40th birthday gift.....

Now a new year begins and I plan to greet 2010 with the same optimism that I am usually known for. I'm not sure what will happen this year, but guarantee it will bring new experiences. Whether or not I get transplanted this year it's going to be an interesting ride.
*****A quick note, I changed the blog settings to allow anyone to post a comment.