Wednesday, July 21, 2010

Impressive!



Wow, what a word. I've always associated 'impressive' with something totally spectacular, like seeing an incredibly awesome medieval castle or the Eiffel Tower for the first time. I've certainly seen my share of impressive sites and know them when I see them. 

I'm probably one of the most unimpressive people around. I don't try to impress anyone nor am I easily impressed by others. Imagine my surprise when the word impressive was used to describe me, or something about me. It completely caught me off guard, in an unexpected situation. When all was said and done, the word 'impressive' used to describe me, left me, well, impressed. And definitely, made an impact on my thinking.

Today was my surgery consult with the Transplant surgeon, Dr. H. This appt. is the last stop before listing for transplant. After all the testing, many appts meeting the whole transplant team, this is it, the day of reckoning.

Dr. H came into the room, introduced herself to Terry and me, and first thing out of her mouth, "You don't look sick enough for transplant." HA!! Exactly what everyone says. But she assured me, I would not be there, sitting in that room, talking with her, if it was not necessary for me. She had read my case, history and entire file, so only had to ask me a few questions about my wedge resection in 2000. She explained a few things about the antibody issue I have in my blood that could possibly reduce the number of donors I could match too. The antibodies could also change and go away, if the antibodies were showing up because of an infection or virus I had at the time of testing. 

She then proceeded to describe the whole Tx process from getting the call to exactly how the surgery is done, what to expect, pain management, recovery, medications, post check ups, etc. Most of the info, I knew already from many online CF friends who have already had Tx. Nothing she told me surprised me at all. In fact, having already gone through a lung surgery, I probably have a sense of what I'll be going through to some degree. 

The surgery and recovery itself does not scare me. The whole issue with me is TIMING. Like my healthy appearance, I still don't feel sick enough for Tx. I want to get the most use out of my own lungs, before resorting to Tx. I know it is in my future, but not sure if it is time, now.

I told Dr. H that I had seen my CT scan and even with an untrained eye, I could tell that it was ugly. I then proceeded to tell her how I felt about timing. She looked at me and said, " You have B blood, the most uncommon blood type. You have an antibody issue that could reduce the donors even more. Your short stature, again limits the donors." Dr. H tilts her head, raises her eyebrows and says, " Your CT scan is IMPRESSIVE "

There it is, that word!!! 


My mind quickly raced. The word impressive has always been used in a positive light to me. 

Dumbfounded, I said, "Impressive, meaning what?" She said, "In the very worst way. Your outward healthy appearance, does not portray the seriousness of what is going on inside. You could be in for a long wait and there just are not many B donors. You are in good health and your recovery would be excellent. I would suggest to list now to increase your odds of a donor match. If you wait too long, when you're really sick, a donor may not be available to you at all. And that would be a shame."

Finally she said, "You really need to wrap your head around the idea that this is the best chance for you. And then, and only then, be on board, 100%. It is now your decision."

I told her I had an appt with Dr. R on Aug 9, in 2 weeks. I would like to discuss this with him one more time and mull over everything she has told me. She smiled and said, "Fair enough. I have a meeting with Dr. R in about a half hour. I'll let him know I saw you today and what you have decided."

I know what Dr. R will say, since he started this ball rolling. I already know what I must do, add myself to the list on Aug. 9. I just want to be with my familiar Doc and surroundings to make the final decision to go with it. 

The next couple weeks will be filled with some intense, thinking, praying, accepting, and 'wrapping of my mind.'
I want to be in a mental place of 'Yes, I need to do this now and I'm ready." 

I want to know that I'm ready to let go of my God given, impressive lungs. 
And ready for my mind to be impressed by a new set of shiny, breathing lungs.

Friday, July 9, 2010

A sunflower kind of day



In honor of my very dear Aunt Roseanne, I changed my summer blog design to sunflowers!!! Why? Because she and my favorite cousin Cindy, *wink, wink* from my Dad's side, came over for a visit and lunch Wednesday. They brought me a beautiful bouquet of tall, majestic sunflowers. I've been admiring them so much, forgetting how much I truly enjoy them. Their gorgeousness definitely inspired my creative streak to create my own version of summer-y sunflowers, love it. Thank you Aunt Roseanne and Cindy!! 

Our visit was, as always, awesome yet too short. We can never really touch on everything to catch up. We always have a ton to talk about between our kids, families, anything and everything. One common constant that always comes up is our memories of our childhood and family gatherings at our Grandpa's house. The incredible smells of his Italian kitchen still lingers in our memory. Attempts to duplicate his famous roast beef never live up to his secretive recipe, if there ever was one. His delectable cooking and tastes are forever lost in his grave.

Along the same lines, we both discovered our interest in tracing our family tree. Especially our Italian roots that almost seem illusive and mysterious. The stories we have heard over the years about our Grandfather's birth and upbringing are varied and confusing. The stories include him being an illegitimate baby, his Mother dying in childbirth @ 16, being adopted at a very young age, to him being raised by a stepfather. He refused to talk about his years growing up in Italy. We know for a fact he left his roots in Italy to immigrate to Colorado through Ellis island @ 20 years old on Jun 20, 1913.

My father and Cindy's father were brothers, both of whom had horrible childhood memories during the depression living in rural Colorado. Cindy's Dad, Uncle Pete to me, passed away when I was 13 (?) and my Dad was never close enough to my Grandpa to shoot the breeze about his past. Nor did my Dad really care to know. I asked him to tell me as much as he knows, which isn't much. For that, I regret never sitting down with all four of my Grandparents, to 'hear' their life stories. 

As I grow older, my 'need' to know my ancestry in more depth, has tugged at me since our 2004 trip to Germany, Austria, Switzerland and Northern Italy. We visited the small town of Castellamonte, Italy 40 miles north of Torino and just south of the French/Swiss borders. This is the last known residence of my Grandfather in Italy from his Ellis Island manifest. My need was further fueled since the day my Dad gave me the boat load of old family photos about 5 years ago. I know I have 100% Italian from my Dad's side, but my Mom's side is a mixed bag. I feel a sense of responsibility to learn as much as I can to pass the info on to my grandchildren. I don't want their ancestry and what I know to go to my grave like my Grandpa's recipes.

I also feel a inner calling to find out more about my CF genetic links, possible kids who were sick and died, most likely of CF. And boy have I found some, on both sides, who died of 'pneumonia.' 

I've been an absolute mad woman examining photos, notations on the backs, clippings, and memorial cards. The internet has been invaluable . . . I've googled, stalked other's family trees & dug into their family histories, delved into Ellis Island immigrant files, reviewed so many lists of names from death records, census, birth records, & cemetaries, and finally gleaned limited info on ancestry.com. Remembering stories relatives have told me over the years have filled in some of the blanks. 

In the end, I have learned a lot dating back to around 1800 on my Mom's side. But there is still much more to learn and discover. It's interesting that the reason that brought me to this place, my grandfather's Italian ancestry, still comes up with a dead end at his birth and death. I guess my Grandfather wanted his past to die along with his Italian recipes. But that doesn't mean my stubborn trait, that I inherited from him, will give up looking until I finally find some answers.

I'll find them, buried somewhere. :)