Better late than never...

OK so I know the point of blogging is to keep people updated on what is going on in your life - it is somewhat impossible to be kept updated when said blogger writes one post and leaves it at that - so I say I am very sorry.  I kept meaning to update but life and stuff (not the blog title) gets in the way.  My last post was November 8th, it was about one week after my initial transplant consultation and I think I was feeling slightly overwhelmed, not to say that that overwhelming feeling has passed but I think I am finally ready to get back into my blog and stay focused. 

We had to be in Phily at 9AM and with the horrendous morning traffic it took us close to 2 hours.  The ride there was fairly simple and straight forward and finding the hospital was pretty easy too.  So far so good.  My husband Tommy and my mom Debbie (Zebra) were with me, they tell you to bring people with you to these types of things and people who will be supportive throughout the process, the people that I live with were obviously the first two and only two that I wanted to bring.  So away we went, and let the fun begin!  I met with the transplant coordinator James - we went through my history and had somewhat of an interview - he was cool and relaxed and he is going to be on my 'team' throughout everything.  He told us some transplant statistics and gave us a basic overview of the pre-transplant process, he said that going into the actual transplant process and post transplant process would be a waste since there is such an abundance of information.  This took about an hour and once this was over I asked to use the restroom, he said that almost all candidates at this stage of the interview need to use the bathroom, so far I am status quo!  When my potty break was over I got to meet with the big dog, the surgeon who would be doing my surgery if I was deemed an acceptable candidate.  I have met many a doctor in my day as I'm sure those of you who have CF know all too well, there are some gems in the bunch but I have found that a lot of them are not empathetic and have a bedside manner that leaves a lot to be desired.  This surgeon was nothing like that, he was warm and compassionate and FUNNY, made me feel completely at ease and I immediately knew that I would have no problem having this man hold my life in his hands. 

We reviewed the records that Dr. S had sent over, over the past year of so my FEV1 has not gone over 30%, the average FEV1 of a transplant candidate is around 25%.  They said that based on my FEV1 and that my need for hospitalization and/or home IV in the past year has increased that I would most likely be a good candidate for the surgery, we decided that evaluation testing would be the next step. 

On a side note I learned many many things during this visit, the several things that have really stuck with me are that CF patients generally do well post transplant - mainly because CF patients are younger and usually do not have any other serious health afflictions.  They did say that of the transplant surgeries lung is the most serious and the has the highest risk of infection, etc.  This is because for all other organ transplants the organs are protected and not exposed to the room air, in lung transplants the lungs are exposed during the entire operation because of their placement in the body and size, lung transplant surgery generally takes at least 8 hours. 

The ride home was interesting to say the least, Tommy went to sleep in the backseat and my Zebra and me were left to navigate our way out of the parking deck and to the highway to get home.  This would of course be only 3 days after my GPS car adapter broke, between me and my mom and directions were are like the blind leading the blind.  We were doing okay until we realized that we had gone the wrong way and needed to turn around, trouble is in Phily there are 1 way streets everywhere so we could NOT figure out how to do this.  After about 30 minutes or us being 'lost' Tommy woke up and directed us how to get out of there, somehow it took him 5 minutes!  I will never understand how people have such a brilliant sense of direction when I have none. 

I went home with a little booklet that explains the evaluation testing, everything seems pretty standard to me with the exception of a cardiac catheterization, I have never had one of these and it does not seem like much fun but I guess I better get used to it.  You have to go through a lot of pain and suffering to get to the rainbow and since I was a young child that is where I wanted to be, Somewhere Over the Rainbow.  I will do anything to get there and have no intention to ever stop fighting. 

I got a call from UPenn about a week after my consultation, my evaluation testing is scheduled for January 4th, 5th and 6th, just about 2 weeks away from now!!  It's 2 days of 8 hour testing and then the third day is just the cardiac test but you have to lay flat for 6 hours after the test and have someone there to drive you home because of the mild sedation.  Tommy will be with me for all 3 days, not sure about Zebra yet, I am sure that she will come to at least 1 day of testing (right Mom?).

So I am excited and anxious and a whole bunch of other emotions, the anxiety has gotten the best of me and I am now taking a mild anti-depressant, it seems to help but not as much as I thought it would.  For a while I was ashamed that I even had to take anything, I feel that I have gone through so much in my young life (non CF related as well as CF related) and I have never had to depend on anything other than myself to get  me through but I have learned to accept this and that is the first step toward healing. 

I had my 33rd *gulp* birthday recently, luckily I was feeling good that weekend and we went into NYC and saw Elf on stage and went and saw the Christmas Tree, etc.  It was cold but a nice feeling to be out of house and with my hubby sharing this magical time of year and season.  Overall my health has been up and down, I have been missing a lot of work lately which worries me, I work from home so how much easier could it get?  I just find that I spend a lot of nights awake from coughing/vomiting and a whole bunch of other unpleasant symptoms that I am just too exhausted in the morning to get out of bed, I've been keeping up but it gets harder and harder as the time passes, I have so much value for the days when I get out of bed, go to the bathroom and let the dogs out.  I then stop and pause and realize that I haven't coughed yet, that is a wonder in itself, it always comes (the cough) but when it's not the first thing that happens when you open your eyes in the morning that in itself is a miracle and a blessing from God. 

With the love and support of my family and friends (and my wonderful friends overseas who mean more to me than they could imagine) anything is possible.  Every day that we get to spend with our loved ones is a gift, whether it is a good day or a bad day, just having someone there for you who offers their unwavering love is what makes life amazing...

Well Merry Christmas and Happy New Year to all - I will post again after my evaluation testing - wish me luck although I don't think with all the blessings in my life I really need it ;)