Archive for May, 2005

Return from Saint Louis

Thursday, May 26th, 2005

Well, I went into St Louis for an extended weekend and returned Tuesday May, 24. I had such a wonderful time. I was very busy and was unable to see several people that I wanted :( But I did so much in the little bit of time I was there. I attended Jacob’s graduation from pre-K, Alex’s event for Boy Scouts in which he became a Bear, two weddings, a reception and my very own birthday party. Well I should say the party was for Mike and Ike, but I celebrated more than they did. They even recieved a cake!!!! Have you ever seen a cake with lungs on it? Well you will when I post the picture it was unbelievable!!!!! If you have any bakery needs go to McArthur’s!!!!!!

The gathering was a BIG surprise for me. My immediate family was there, family-friends and my best girlfriends. I kept calling my girlfriends all day to get together on Sunday and they wouldn’t call me back. Well, now I know why. I had such a good time visiting. And everyone did so well keeping the secret. I really was oblivious until about 15 minutes after I got to my brother’s. I even got a box of Mike and Ike’s, mmmm. I’m much better at overindulging in candy. I recieved the Mike and Ike’s Friday and I just finished them today–Weds.!! They were very tastey–Thank you Mindy!

On my trip I was able to finally meet Scott’s neice Lauren who was born several weeks early. We are all so thankful she is doing so well–wonderful actually and she is adorable!!! I believe she weighs around six pounds now. But she has the family eyes, big and blue!! Congrats to Rod and Wendy!!!

As I sit here I realize how fortuante I am to have such a wonderful family and friends. I really do not think I could have made it throught the surgery and rehab without you. Thank you so much!

Okay now I have to go study. June 6th I have three exams. I need to buckle down and study, study, study! I begin summer classes on June 12 and the Fall semester begins in Aug. People at school keep saying that getting my AA will be fast. I hope they are right!

May 17, 2005

Tuesday, May 17th, 2005

Well the celebrations for my 1 yr anniversary have ended. But I am still smiling and glad for my fortune!

It is ironic that this time last year the hospital staff were trying to get me out of bed and strengthen me up, with much hesitation from me. I just wanted to lay in bed and that is not what you are supposed to do.

Mike and Ike are feeling well. Saturday I worked out in the gym for two hours (part of make up time for a gym class–HAD TO DO IT!) and my chest is so sore!

I am just about finished with my 1st semester back to school since 1995/96. I feel confident that my grades will be good. I just wish I was this interested in learning when I was younger. Sometimes I feel like I have been reborn. Not only bc of the surgery, but partly because of the time that I waited for “the call”. It gave me a chance to slow down and evaluate a lot of things that I normally would not have thought of if I were working a 9-5 job. There were times that I hated waiting because I was so bored, but looking back on it I think it really helped me.

Sometimes I hate that this one-sided conversation/writing bc I love to know what other people are doing. I like to know when wonderful things are happening in your lives Sometimes we forget how large the world is. Well, I’m trying real hard to remember that.

It is beginning to get hot here in Southern California. We had to install the air conditioner yesterday and start it up. I love the cold air but I hate the bill! Since they cut all of the gorgeous trees from in front of our building it gets so hot. I loved those trees, but I guess they were effecting the roof. But now I think about it the roof still leaks and the trees are gone. Pretty sad!

Hope this post finds you well.

Friday May 13, 2005

Friday, May 13th, 2005

Hello there.

I hope things are going well for those of you reading this.

Yesterday was a wonderful, I don’t think I lost my smile once the entire day. We ended up at JAXX up the street for dinner, I wasn’t too crazy about the idea bc I loved the resturaunt that was there before, a small family- owned, greek place. But JAXX ended being a wonderful place to celebrate my 1 yr anniversary. Scott, Jill and I all had a beer to toast “a year”. We were sitting there, together again, same time totally different circumstances than last year. Jill did something real cute. I guess the day of my surgery she snagged that day’s calendar and laminated it for me. Now I need a frame to frame it!I thought that was a really good gift. I actually got a lot of birthday gifts, maybe more than for my REAL birthday–June 18th if you need to know. haha

But back to the important thing, JAXX and the food. I had a steak sandwich, cole slaw and 1/2 fries–waffle fries + two amber beers. We sat outside and enjoyed the evening by eating drinking and reminisced about the the day exactly one year ago. It was very fitting. The only thing that would have made it better is my family and girlfriends

And last but not least I would like to wish Billy a Happy Birthday! Billy is Scott’s uncle and his birthday and my “lung” birthday are the same day. We forgot to call ):

Good Morning

Thursday, May 12th, 2005

Okay today is the day! This time last year I was napping and becoming increasingly annoyed but the telephone ringing over and over again. Little did I know that it was the hospital-Brandi  trying to contact me to tell me there was a possible match. When I finally answered the telephone it was around one. I’m surprised that the hospital did not give up on me and call the next in line. Lucky for me.

When I did answer the telephone I thought I was dreaming. Especially since I had never met Brandi before, usually I had dealt with Jay. At one point Brandi had to put Jay on the phone bc she could hear the confusion in my voice. I was so confused that I asked Brandi if I would have time to go get Scott?. She replied with “I think your boyfriend can find another way home from work”. Can you believe I thought of that before the BIGGER picture.

I was also a little disappointed because the Dodger’s were playing the Cub’s here and we had tickets. I really thought that Scott should go ahead and go to the game and catch up with me later. I’m glad he didn’t. What was I thinking? I believe that Dr Hodges was out of town, but he called me also to ask me what I thought. He really brought me out of the confusion and soon after our brief conversation I was running around the apartment trying to figure out what I needed. What does one need when going to the hospital for a double lung transplant?

The one thing that I had always wanted to wear during my surgery was my grandmother’s’ ring, it was actually her mother’s ring with my Dad and my uncle’s birth stone in it. Can you believe that I left the house without it? And the only reason I returned home was because I thought I had left a candle burning on the coffee table, once I came back in I realized there was no candle burning, but remembered that I wanted THAT RING! I grabbed it quickly and headed out the door. To my disappoinment I couldn’t wear in the surgery after all.

The ride to the hospital was long. Longer than usual. I really paid attention to the way things looked, the hills, houses, flowers, trees Everything just in case I would never see them again. I drove straight down Santa Monica Blvd East to the 101 South–alone. And I even stopped at a gas station on Santa Monica because we were low. How I did I will never know. I was calm and that is not always my strong point. The entire trip to the hospital took about an hour. I know this because I listened to the entire Jack Johnson, On and On CD and sang along with every song! Maybe that is what calmed me down, his music is very laid back, beach music with acoustic guitar. Thanks Jack. If you like laid back music you should take a listen to him!!! When I was alone Jack was there. I guess it gave my mind a chance to calm before the storm. I still LOVE Jack Johnson!!!!

So I get the hospital and find a meter. Wow was I lucky, that hardly ever happens. After Scott and Jill got to hospital, Scott double checked that I put money in the meter and was surprised that I had especially under the circumstances.

The next few hours were pretty crazy. I walked into the ICU department and sort of freaked out. I’m sure you have been into a ICU before, it is sad. Lots of monitors beeping and most people are just in their beds, sleeping or in commas. When I told the nurse behind the counter that I was there for a double lung TX she looked at me like I was crazy. Luckily a respiratory therapist that I know, Mike recognized me and said that I was a CF patient and yes I was on the transplant list. Thank good he happened to be there otherwise I would have been tripping on my words. I was actually on the wrong side of ICU and had to go to the other side where a room was ready for me.

The room was scarey and sometimes I still have bad dreams about it. Picture this: A bed that is VERY high off of the ground, about 15 machines behind the head of the bed and the front of the bed facing a HUGE window where people can watch you. It was like a fishbowl without the fun little toys at the bottom. I don’t like to be watched and especially doing something I’m not sure of. The fishbowl is a great thing because it allows the drs and nurses to watch your every move and see the machines behind you. I serves its purpose!

I think the 1st thing I had to do was many breathing treatments and paperwork out the wahoo. Just think about how much paper work you have when something like x-ray, labwork or other tests and multiply that by 25.There were nurses everywhere. I got a IV and I think an angel that gave it to me. In order for my IV to stay in the nurse had to find a large vein. He was so careful and only had to stick me once, surprising for my type of veins. Anyway the reason I think he was an angel because he came in for the IV + a cute little sticker with a smiley face on it and then I never saw him again! But also the way he spoke to me. You could tell by his voice and what he said that he was very spiritual man with an Alabama accent. He calmed me. After the surgery I wanted to try to contact him to tell him but for the life of me I couldn’t remember his name.

Scott and his sister Jill were there from the IV time and on. I don’t think I could have been in their position, to watch all of this take place and perhaps not seeing me after the surgery bc of any problems. My parents were not there. At first it really bothered me, but then after the surgery I was glad that I hadn’t seen them before. Otherwise I think I would have been a mess. When the donor lungs were a good match and good quality I was heading towards surgery.

And just like in the movies when they take the gurney from ICU down the halls to surgery. I remember feeling nauseous laying flat on my back and watching the ceiling lights as I’m speeding towards the operating room. When we got to the double doors I had to say goodbye to Scott and Jill. That was very hard. They were both calm which calmed me. If my Mom had been there I probably would have jumped from the gurney into her arms. That’s why I say I’m glad my parents weren’t there.

Next was the pre-operating room. I was alone, but had many warm fuzzy thoughts. Mostly of playing with my nephews, niece and Sosa. With a few people in gurneys waiting for surgery also, all different types of surgery. I laid there for a while and it was so cold and quite. A little while later a two young drs came to me and ask me if I am ready. I didn’t know how to respond. But before I knew it a guy came to me, injected me with something (pain killer or sleeping stuff)and said we were going in. The operating room was soooo scarey! I just remember how tall the ceiling was, but felt a little comfort when I saw a stereo. Music is so good for the soul. But when I asked what music the surgeons listened to the nurses responded with COUNTRY.

                                                                                    OH MY GOSH!!

The next thing I remember is being back in the fishbowl, looking for my parents and questioning if the surgery went through. My Mom was there and soon after my Dad appeared.

Happy Birthday

Wednesday, May 11th, 2005

How lucky we are!! In a few days it will be your lungs 1 year anniversary. I think back to that terrible/wonderful night almost a year ago. Your mom and I trying to find someone at 11.30 at night that could speak english in East LA or try to find a highway sign that hasn’t been painted over, two miracles happened that night, your new lungs and your mom and I finding our way back onto the interstate. I think back too the day you were diagonoised and the Doctors at Cardinal Glennon put  us in a room and played a video and explaining there wasn’t much that could be done and your life expectancy would be about 5 years….How far we’ve come.I’d also like to acknowledge the donor family who I often wonder about, there has been no response to my letter but that’s ok, I’m very sad for their loss but very thankful for their decision to donate their childs organs so many others could live. I also know that Grandma Willie is smiling down on you. It’s so wonderful to hear your voice (how different it is) not to hear your constant agony with coughing spells. WE ARE TRULY BLESSED.

Frank