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???

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