Friday, December 5, 2008

Mid 2005

On June 3, 2005 I turned 24. I couldn't help but thinking how far things had come in the CF community and the new medications that were out that helped people with CF live longer. When I was diagnosed, my Mom was told not to expect me to live past the age of 12. Here I was, 12 years past that, and although I was getting sicker, I was still alive. I had actually thinking about things that I wanted to do before I die and started to make a list of things that I wanted to do before I did or things that I had accomplished that meant a lot to me. Below are some of those things....

1. I had lived past the age that my Mom was told I would.
2. I had graduated High School with Honors.
3. I had graduated college with an Associate's Degree in Business Administration.
4. I got married and started a new life with Nate.
5. I wanted to be a Mommy although I knew that it was next to impossible with the upcoming transplants.
6. Go on a hot air balloon ride.
7. Go to France...I didn't take 7 years of French in school for nothing.
8. Go swimming with the dolphins.
9. Teach people who don't know about CF at least one thing about it.
10. Live to tell people about my experience with transplant and to urge others to get one too if they needed it.

I felt fortunate at that point that I had lived 24 years with CF but there was no way that I was going to give up that easily. That was not my style.

June 7-9, 2005
We left for my first trip to the Cleveland Clinic on June 7 for my appointments on the 8th and 9th. Nate, my Mom, and Mary (a friend of my and Nate's) went to Cleveland with me. We got into Cleveland and checked into our hotel around 5PM. We got to bed at a decent time that night because we had to be up early the next morning and I had a lot of appointments that day.
June 8
I first had to have x-rays and a CT scan of my lungs. I then met with the social worker who thought that I had a great attitude toward transplants but thought that I should also get some things resolved with Walt (my Dad) who had not been there for me since I was 4 years old. I then had to have PFT's, and do a 6 minute walk test. Overall, the doctors at the Cleveland Clinic said that my lungs were still functioning well enough for now but they had said that my x-rays and CT scans showed that my lungs looked really bad. They had a lot of mucus and scarring. I also saw the liver doctor that day but he didn't have much to say about the liver aspect of the transplant. Those talked were deferred until I had to go back out to Cleveland for the liver tests in July.
June 9
I had some time free of evaluations that morning so we went and met with one of Nate's college buddies and then it was back the the Clinic for more tests. I had an appointment with Dr. Marie Budev that day. She was the transplant doctor for my case. She informed us that there were 4 different surgeons doing lung transplants at the Cleveland Clinic and they had done 35 lung transplants so far in 2005. For my case, they had to decide if they wanted to do the lungs and liver at the same time. Dr. Budev liked the results of my tests and informed me that I still had time before I actually needed the transplants. She didn't want to do the transplants too early because of the risks that we would be taking when I was still fairly healthy. Dr. Budev put it really straight forward and said that if we took the 5 people who were in the room and give them all lung transplants, one person would be dead within the first year because of complications, infections, and/or the body rejecting the organs. So with these statistics, she would rather take the time to do a complete work-up before placing me on the transplant list. It was a very informative visit.

Over the next 8-10 months after those appointments, I had to have my liver evaluations (July 12-13) and had to have other tests to make sure that my body was okay to go through with the transplants. I had to have a mammogram, PAP smear, electrocardiogram, echocardiogram, bone density test, and regular dental work-ups. I also had to go back to Cleveland occasionally to have regular evaluations to assess if my lungs and liver were getting worse. At the end of all of this testing, there would be a decision on if I should be listed. If they didn't list me, I had to go back every three months for more testing. If I was listed at that time, Dr. Budev felt that the tranpslant would happen fairly quickly because I was young and I have Cystic Fibrosis. She had told me that CF patients are normally listed toward the top and that's why it would happen fairly quickly. I would only have 2.5 hours to get there because the lungs have a preservation time of 6 hours. In most cases the patient is in the hospitla for 12-14 days and then have to stay within an hour of the clinic for roughly 30 days for frequent check-ups and labs.

Jornal Entry from around that time....It's nice to know that I still have some time before the transplants really need to happen. After the appointments, everything is definitely more of a reality and it also makes it more scarey. Everyone keeps telling me that things will be fine, but who's to say that it will. I can only hope that the transplants are a success and that it prolongs my life a lot longer than the average age (mid 30's) for a CF patient. There are so many things that I feel that I still have to accomplish and I hope that I get to do so.

More from June/July 2005
On June 20th I had a normal appointment with Dr. Sexton. I told him that I had an increased cough and was getting short of breath more often. Other than that, I had been feeling fine. While I was at his office, I had a coughing fit and it led to me coughing up blood. He felt that there was an infection starting so he put me on Zosyn (IV antibiotic) and sent me home. At that point it was taking longer to get better than the previous times I had been on the IV.

I went to the oral surgeon in the end of June and found out that I had a wisdom tooth that was badly decayed and that it had to be pulled. The oral surgeon, Dr. Flihan, would not do anything with it until he talked to Dr. Sexton. He needed to know if it was okay to pull it in the office with just novicane or if I needed to be put under and have the wisdom tooth pulled in the hospital. It ended up being that it was okay to have it done in the office and it was pulled without a problem.

My co-workers at HGS started putting fundraisers together for me to raise money for the transplants. They did a dress down day where people had to pay to be able to dress down and that money went into my benefit account. My surperviser Lori was also putting together lunches to sell to people and she took the money out that it cost her to buy the supplies and then the profit went into my benefit account. They had atually raised a lot of money for my benefit account and it really helped.

July 12-13, 2005
I went back to the Cleveland Clinic for my liver transplant evaluations during this time and things went well. I flew out there by myself because Nate couldn't really take anymore time off of work and since there was no one to drive me out there, I had decided to fly. I met with the liver doctors on the 12th and it was mentioned that if I did not need the double lung transplant, I would not be getting the liver anytime soon. But, it had been decided that everything would happen all together because it was felt that with my liver being sick and failing, that it would not handle the new medications that I would be on for the lung transplant. Cleveland Clinic doctors had never done double lung and liver all together so none of us were sure as to how the transplant would work and how long my stay in the hospital would be. I knew that I was taking a risk with them and they were taking a risk with me, but apparently it was a risk that we were all willing to take.

End of July
A couple of weeks after I got back from my liver evaluations at the Clinic, I ended up back in the hospital from 7/25-7/29. That meant that I was in the hospital for my and Nate's 3rd Wedding Anniversary. I was in for breathing difficulties and after a few days, I got better and was sent home on IV antibiotics. I had since realized that I had not had my period since the end of May. My cycle was very irregular so I hadn't really thought much about it. Just to be on the safe side and to get the pregnancy test out of the way before I went to my doctor's office, I decided to buy a pregnancy test and take it at home. I thought that it would just get it out of the way so that I could tell the doctor that I had already done that test and that was not what was wrong with my cycle. Well......surprise! There were two lines (although one was faint) and that meant that I was pregnant! I was still not sure about this so I called my sister and asked her about false positives and she told me that it's normally only false negatives. She also told me to get one of the pregnancy tests that are digital read out and will say either "pregnant" or "not pregnant." I went out with Nate that night and bought one of those and I took the test the next morning before I went to work. Again, surprise!!! This test said pregnant. Now what was I to do???

Beginning of 2005

The beginning of 2005 was a little rough. I went to see Dr. Sexton a week after the cruise because I had not been feeling well. I had started running a fever and coughing up blood again. So, on February 7th I was admitted to the hospital. My fever kept spiking to 104 degrees and my oxygen level had fallen into the eighties. While admitted this time I had more CT scans, x-rays, blood work, and plasma transfusions (Fresh Frozen Plasma-FFP). Sputum tests revealed that I had pneumonia and staff infection. I was on a few antibiotics, breathing treatments, and had another embolization to stop the bleeding in my right lung. The CT scan and the blood work showed that my lungs and liver were worse than they were in November 2004. With the medications and embolization, I started feeling better except for the extreme bruising that I had from the embolization. I was released on Valentine's Day. I had to stay out of work for another week and stay on IV antibiotics through my port during that time.

During this time, we moved on with plans for the double lung and liver transplants. I was set up to have appointments done at Massachusetts General (although they were not sure about doing double lung and liver) only to find that the insurance (MVP) that I had through work was not contracted with MGH and they wouldn't pay for the transplants if I went there. We changed the clinic that I was going to go to to the Cleveland Clinic and waited to have the initial appointments set up there. In the process of this my insurance at worked changed to Blue Cross Blue Shield and I learned that BCBs would have paid for MGH but I decided to stay with the Cleveland Clinic. I received a phone call from Alan Stewart at the Cleveland Clinic and I received my appointment list in the mail for my initial appointments with them. I was to go to the Cleveland Clinic for the first time on June 8-9, 2005, just days after my 24th birthday.

I was busy for a little while in these months organizing a team for the Great Strides walk for Cystic Fibrosis. There was a total of 36 members on my team and our name was "Team Patti." I alone raised $968 and my whole team raised $1,643. Everyone who walked that day raised a total of over $35,000 which probably helped immensly with CF research. I met a few people that day but the people that I will remember forever are the people from "Team Tammy." I learned that Tammy had a double lung transplant at the age of 24 and died at the age of 35. She was a leader in a lot of things that she did and she had even carried the Olympic Torch. The last name of the family sounded familiar and I tried to figure out where I knew the name from and then finally it hit me that I had a French teacher at Groton High School by that last name. I mentioned that and they all looked at me and one of them said that she was part of their family. Mrs. Twitchell wasn't there but her husband was and I talked to him for a little while . He remembered that she had mentioned a long time ago that she had a girl in her French class who had CF and that must have been me. Sure enough it was!!

On the down side of all of this, I started getting sick again and went back to Dr. Sexton. I started back up on TOBI, kept taking Zythromax, and also had to take Cipro and Bactrim on top of that. Below is a journal entry from that time.

May 24, 2005
I'm so irritated with being sick constantly. I can only hope that the transplants happen soon and that things are better afterwards. I'm just looking forward to simple things such as being able to have a good laugh without coughing, playing my flute without getting out of breath, and just overall being able to breathe easier. It's the simple things that I really look forward to.

Wednesday, December 3, 2008

Caribbean Cruise 2005

As I mentioned in my last blog, I was to go on a cruise in early 2005. I went with Nate, his parents (Dale and Gina), Nate's brother (Shane), and his brother's girlfriend. We left from Syracuse, NY on January 21 to fly down to Ft. Lauderdale, FL and we took off on our cruise from there the next day. This was the first time that I had ever been on a plane that I could remember. It really was not that bad other than the coughing fit that I had when we were taking off. I am going to take what I wrote in my journal and put it in here because if I didn't, I wouldn't remember the details of the cruise.

Sunday, January 23, 2005
We started off on our cruise yesterday! It's so unbelievable that we are out in the middle of the ocean. Getting here wasn't as easy as we had hoped though. Our flight was scheduled to take off at 11:11AM on Friday and we didn't end up flying out until 1:55PM. When the plane that were supposed to fly on landed in Syracuse from Atlanta, they had a hard time opening the door. They later found out that the door was bent and the flight was indefinitely delayed. The airline employees suggested that we get booked on another flight and that's what we did. We were booked on the next flight out to Atlanta at 1:55 and then from there to Ft. Lauderdale. We were also bumped up to first class from Atlanta to Ft. Lauderdale. We coudln't complain! We ended up in Ft. Lauderdale at 9PM instead of 4PM like we were supposed to be.

Saturday morning I woke up at about 6AM and got dressed. After we were all ready and most of the way packed, we went to breakfast and then for a walk around the area of the hotel. It was a nice sunny morning and the walk was fun. We saw a lot of buildings that were just built with stores that will be opening soon. I was also taking notice of all of the palm trees because that was my first time ever seeing one other than on TV.

After the walk, we gathered our things and waited for the hotel transportation to take us to the pier to board the Carnival Legend. We saw a bunch of different ships, seven of them to be taking off that day, including Celebrity Cruises, Princess Cruises, and the Queen Mary 2. That ship is HUGE! Boarding the ship wasn't as much of a hassle as we thought it would be. The line was long but it moved fairly quickly. They took our luggage first, then we went by a place and had our "welcome aboard" picture taken, showed our tickets and got our cards, went through security, had our pictures taken to be put on our cards, and finally boarded the ship.

Once inside the ship, I was amazed! It was so fancy. There are so many different restaurants, bars, and a bunch of other things, inclusing a pizzeria that is open 24 hours a day. I love it!

Monday, January 24, 2005
There's still even more that amazes me about the ship. Last night was our first formal night on the cruise. I went to the salon and got my hair highlighted, cut, and styled. Nate and I had formal pictures taken and most of them turned out really nice. We bought a few of them and had one pose copied into wallets. These are the first portraits that we have had done in the 6.5 years that we have been together.

The Captain's dinner was fun last night. The waiters and waitresses all formed a line and went running through the dining hall flinging their towels all around. They all sang a song to us too. For this dinner, I had Victorian Perch with some sort of fancy shredded potatoes and sauce. It was good.

Thursday, February 24, 2005
So, here we are, a month from when I last wrote. There has been so much going on and some of it is kind of frustrating. I don't know whether to cry, laugh, or just shrug things off. Anyway, the rest of the cruise was excellent. We stopped in St. Marrten on January 25, which was Dale and Gina's 30th Wedding Anniversary. On that island we went to a butterfly farm. There were these blue butterflies that were amazingly beautiful! It was awesome just to have butterflies flying all around me. The tour of the rest of the island was okay. To me, it kind of looked like a 3rd World country with all of the houses looking like run-down shacks and goats and sheep on the loose everywhere. It was interesting to see it but I don't think that I would want to go back there. That night, we all went to the Dinner Club on the ship for dinner and the food was excellent!

The next day (1/26), Nate and I went on a tour of Harrison's Cave and on a Tiami Sunset Cruise in Barbados. Barbados is such a beautiful place and I wouldn't mind living there. The cave was interesting to me but Nate says that Howe Caverns in the US is better. The catamaran that we were on for the sunset cruise in Barbados was nice and the views were awesome. We went by the hotel that Tiger Woods bought out for a whole week for his wedding/honey moon. The tour guide told us that one night in a room there costs $3,000. That's a little bit too rich for my blood! Overall, our day in Barbados went well and I want to go back there for vacation sometime.

Our stop in Martinique on January 27 was interesting. I was amazed with the sites on this island. The water was breathtakingly blue and the scenery was the greenest and most beautiful that I had ever seen. I saw a valcano for the first time other than seeing it on TV. This valcano last erupted in 1902, killing everyone on the island except for one man who was in prison at the time. So, on this island, we went on a Calypso party boat tour. Within 10 minutes of starting out on the tour, a guy had spilled his rum punch all over me and I had to put up with the smell for the rest of the trip. We went out to a beach and spent two hours there. I found some interesting shells, saw a sea cucumber for the first time ever, and also found some live starfish. Gina packed up some of the starfish and brought them home. On the way back to the ship, we stopped near a bat cave. There were a lot of bats in there and there were also some very pretty tropical fish in the water near the party boat. I would love to go back to Martinique sometime and see more of the island and not just the beach that we were on.

The last two days of the cruise were spent at sea, making our way back to Florida. Our last day in the dining room was very memorable. We had a very good dinner and a special dessert. It is called Baked Alaska and it was delicious. All of the waiters, waitresses, and hostesses sang a goodbye song to us and I almost cried. Our last day on the ship was very rocky as the waves in the ocean were 10-14 feet high. They closed the outside decks to keep us all safe. Many people were sick, including me. I stayed in bed practically all day because I was too sick to be up and moving about.

The cruise came to an end when we got off the Carnival Legend and were back on dry land in Florida. We spent the day in Ft. Lauderdale doing some touring on a water taxi. The estates that we were seeing cost millions of dollars and so do the yachts. I could only imagine what I would do with that kind of money!! We went to the Cheesecake factory for dinner that night and I didn't like anything that I got for dinner. There seemed to be no true flavor in any of the food.

January 31, 2005 was our day to travel back home. When we were boarding the plane for our flight from Ft. Lauderdale to Atlanta, my seat was changed due to my inability to feel comfortable opening an exit door and directing people to it if anything were to go wrong. I ended up sitting next to a girl named Laura Czarny. When we took off, I started coughing really bad and she asked what was wrong. I told her about my medical history and she tole me about her sister Cheryl. They had also had a rough time throughout their lives. Before we got off of the plane in Atlanta, we exchanged e-mail addresses and promised to keep in touch. She also said that she wanted to give me something because I needed it more than she did. I was thinking, what on earth could anyone give me that I needed mor then them when they just met me?? And then she handed me a Rosary. It is very beautiful and she told me that it used to be her mother's. I told her that I couldn't take it and she told me that I must, so I did. I truly believe that someone was watching over me and she was my Guardian Angel that was sent to prove that everything will be okay.

Coming back to NY that day was the realization that our vacation was over and that it may be my last one for quite a while. The weather was completely different from where we were. We had been in 70-90 degree weather and we came back to freezing temperatures. That made me wish that we lived in temperatures like that year round. Maybe I wouldn't get sick so often.

Now back to present day 2008.....the cruise was an experience of a lifetime! I believe that we are going to be going again in the next couple of years. I would recommend that everyone go on a cruise if the opportunity arises. Healthwise, that week was the best that I had felt in a really long time. I still have the Rosary that Laura gave me and the last time that I talked to her was earlier this year. Her sister has since published a children's book about being in the hospital and that book sits on my bookcase in my room.