Monday, August 23, 2010

Brady's eye and getting listed!

After my hospitalization and the adventure we had on the way home, I was happy that I still had my cousin, Sarah, at my house to help out with Brady. I was able to get the sleep that I desperately needed. I was on pins and needles, waiting to hear if/when I would be listed for the double lung and liver transplant. However, life still went on. On August 24, 2006 Dale (my father in law) and Sarah took Brady to his appointment in Rochester for his right eye. We thought that Mike was going to make another conformer, but to our surprise, he started preparing a prosthetic eye for Brady. Before leaving that appointment, Dale made another appointment for Brady to actually receive his prosthetic eye on September 18. This was about 4 months sooner than we had originally anticipated. I couldn't wait to see Brady with an eye instead of a conformer!!

On that same day, August 24, 2006, I got a phone call from someone at Cleveland Clinic. I had finally been placed on the double lung and liver transplant lists!! I was informed that the decision was made that the lungs and liver would all be done at once and the organs would come from the same donor. That meant that the donor had to be perfectly healthy for me to get their lungs and liver. I was told that my LAS (lung allocation score) was 35, which was pretty close to the top of the list, but it wasn't the very top. Since I was to be a multiple organ recipient, it would also move me closer to the top, we just weren't sure when.

My appointments in Cleveland on September 8 didn't bring any good news. I didn't do so well on the PFT's, I was running fevers, my six minute walk distance had decreased, and I was still losing weight. The doctors wanted to admit me to the hospital. I was told that if I didn't get the transplant soon I would be taken off of the list because I wouldn't be healthy enough to remain on the list. If this happened, I would have no hope for recovery, and of course, that scared a lot of us. With this news, I wanted to be home with Nate and Brady as much as I could because either I wasn't going to live much longer, or I was going to be gone for a while when I finally did get the transplant. Dr. Budev put me on Cipro for 2 weeks and I went back home.

When I returned home, Sarah had returned to her home because school had started. I was back to taking care of Brady by myself and that had been my biggest challenge thus far. He was getting bigger and was needing more attention to keep him occupied and happy, and I just couldn't do it on my own. My crappy CF lungs wouldn't allow it. Sometimes just changing his diaper was too hard and it made me so unhappy to think that I couldn't even care for my own son. I wanted to be the mother and wife that I knew I should be, and I was getting so frustrated that I couldn't. I was hoping that I would get the transplant and be home for Christmas and Brady's first birthday, which meant that the transplant had to happen immediately...but it didn't.

On September 18, 2006, Dale, Brady, and I left the house around 8:30AM to go to Rochester to get Brady's new eye. We went in for Brady's appointment and almost right away, Mike had the eye almost finished and put it in Brady's eye socket to test the size. Since it wasn't completely finished, it looked a little weird. Mike took it out and gave it to Michelle to finish painting it. We sat there and watched her paint the eye for a little while and then went to lunch at a small diner while it was being finished. While we were out driving around, we found Brady a new friend. It was a HUGE snapping turtle! No, we didn't bring it home, I just took a picture of it and left it where it was.

When we got back to Strauss's, Mike explained how to put the eye back in if it were to fall out and then we watched him put it in Brady's socket. From that day on, I had a new baby boy! He looked so different and even more handsome!

The next day, Nate, Brady, and I had an appointment at the Picture People to get family portraits done. Most of them turned out really nice, even though Brady was cranky because he was a little tired. We were going through the poses we wanted to order when I started crying. I was just thinking about being away from Brady when I have the transplant. It was something I wasn't looking forward to (leaving Brady) but I knew it was for the best. The best part was, the people who did the pictures asked why I was crying and we told them what was going on, and we think, because of that, the check that Dale and Gina wrote for the over $300 that the pictures cost, was never cashed!! We got all of those pictures for free. If they truly did just disregard the check, and not lose it, I thank them with all my heart for what they did.

With Brady having his new eye, and the family portraits being done, there was only one thing I wanted done before the transplant, have Brady baptized. My Aunt Kate worked on this for me and found a lady from the Clinton Episcopal Church who would perform the baptism for us. She came to the house to do his baptism on September 24. His Godparents were officially name. We chose people who have always been there for us and have one child and had decided not to have anymore because of the complications the wife had while she was pregnant. We were so proud to name Larry and Mandy Pealo as Brady's Godparents. We knew how much they would love him and take care of him if anything happened to us and no one else could take Brady. The people who were at the baptism included Me, Nate, Brady, Dale, Gina, Aunt Kate, Uncle Tommy, Alex, Barb, Makayah, Destiny, Cobey, and the Pastor. The Pastor included Makayah and Destiny by having them help our and bless the water. It was a very nice ceremony and Brady was a good boy thorughout the whole thing. We received Godparents certificates that I gave to Larry and Mandy at a later date, because they couldn't make it that day. With all of this done, I was now ready for the phone to ring, and for one of the doctors to tell me to head and meet the plane, because they had organs for me.

Saturday, August 21, 2010

Released from Cleveland Clinic

While I was in Cleveland in the hospital, the doctors scheduled a date to talk about my case and how they were going to present it to the board. They were to all gather together on August 4, 2006 and decide if they could do a double lung and liver transplant. If they couldn't do both, in the very least, I would need a double lung transplant as soon as possible. After the meeting, it would be about 10 days before we would hear from the board.

At this point, the biggest concern, from the doctor's point of view, was infection control. The infectious disease doctor was concerned about all of the antibiotics that I had been on since February 2005. Since that date, I had pretty much been on IV antibiotics for 3 weeks and off for one. Another doctor said that if they could keep the infections at bay, he wasn't too worried about weening me off of them. But, if infections keep setting in, and I have to go on stronger antibiotics, it could be a really bad thing.

On a good note for that day, I talked to Ally (girl I saw on Deal or No Deal) for about 45 minutes. It was good, I needed that. She was sweet and she answered all of my questions.

On August 4, 2006, we were told that there were about 50 doctors, nurses, coordinators, case workers, etc. in the meeting. They decided unanimously that they would go ahead with the double lung and liver transplant. The next step was to go through the Ohio State Board, but the doctors didn't see a problem with getting through to them, because the hospital requirements were higher than the board requirements. So, we took this as an almost definite yes, that I would soon be listed.

I was released from Cleveland Clinic on August 8, 2006 to finish IV antibiotic treatment at home and was to return for follow-up appointments in September. My Mom and I left in Grandma and Grandpa Croop's vehicle and almost immediately, it started making a weird noise but Mom wasn't sure what the noise was. We had just gotten over the Ohio boarder, into Pennsylvania, when we had to pull off the road into a rest area because the noise was worse and the vehicle was pulling to the left with the steering wheel turned completely towards me (the passenger seat). When we got out of the truck, it was smoking and the driver's side front tire was about falling off. We also noticed that the oxygen tank, that was given to me from the clinic, and was supposed to last until we got home, was almost empty. The total drive was about 6 hours and we were only about an hour into the drive. The oxygen wasn't going to last.

We tried calling Grandma and Grandpa, but Grandpa wasn't around and Grandma was in Canada with Aunt Kate and Uncle Tommy. I called Nate to let him know what was going on and Dale and Gina gave us their AAA number to try to get help. AAA would not help us because Dale and Gina were not with us and it wasn't their vehilce. Then, I ran out of oxygen. It was the one thing I desperatley needed, and it was gone.

I dialed 911 and told them that we were broke down, I have Cystic Fibrosis and was being evaluated for lung transplant, and I was out of oxygen. They sent EMT's and an ambulance. The EMT's got me hooked up to some oxygen and took us to Brown Memorial Hospital in Conneaut, Ohio so I could stay on oxygen until we could get a rental car or until someone could come get us. Grandma and Grandpa's vehicle was towed to a repair shop, where someone would pick it up when it was fixed.

When we got to the hospital, my Mom tried getting a rental car, but most places were closed, and the one that was open was 30 miles away, in PA, and they wouldn't travel state-to-state to bring a car to us. The ER doctor (Dr. Namey) did everything he could think of to help us. He tried to help Mom get a rental car, he got me in the hospital and hooked up to oxygen quickly, and he found a way to get me some food even though the cafeteria was closed. He was really a wonderful man, and eventually, we learned why he was so willing to help. He told us that he had a CF patient a few years prior who eventually got really sick and passed. He wanted, more than ever, to see that I was okay and that I made it out of there safely. Mom eventually got Barb (my sister) and her husband to come get us. In the meantime, Mom slept in the waiting room and I was on a stretcher in the ER. Dr. Namey kept checking on me to make sure I was okay and I slept on and off.

My sister and Corey got to the hospital around 2 in the morning and I finally made it home safely at 9 in the morning. What was supposed to take only six hours or so to get home, ended up being an 18 hour trip! I was exhausted, but glad that things worked out. I dreaded another trip to Cleveland, but I knew that it would eventually happen.

We still hadn't gotten in contact with Grandpa by mid-morning, so I okayed the repair shop to fix the vehicle and I gave them my credit card number to pay for it. The vehicle needed new ball joints, the axle broke, and it needed an alignment. It came to just over $1,000 for the repairs. All of my and my Mom's stuff was in the truck and we didn't get it back until that Friday when Mom, Nate, and Alex (Nate's cousin) went to get the vehicle.

It was all quite an adventure, that I didn't care to take again. I was happy to be home and see Nate and Brady. I felt better after my admission to the hospital, but I knew that it would take the transplants for me to really feel better and get back to living my life. I continued on my antibiotics at home for another week and I scheduled my next appointments in Cleveland for September 8. The doctors were positive that I would be listed and have the transplants by that time...but it just wasn't to be.

Friday, August 20, 2010

The months following the birth of Brady.

This entry is taken from my journal, written August 4, 2006....

"It's been about a month since I wrote in here and Brady is doing great. He now weighs over 15 pounds and is over 25 inches long. He has been growing so fast. We eventually found out that he does have a right eye, but it's underdeveloped and he will not be able to see out of it. He goes to Strauss Prosthetics in Rochester for work-ups for a prosthetic (glass) eye. We have also been told that even though he has a couple of things wrong with his left eye, his vision should be okay.

Anyway, for his right eye, Michael Strauss put that whey call a conformer in there to help the socket form around the eye so that a prosthetic will fit properly when they make one for him, which should be when he's about a year old. Brady got his first conformer in April and a month later, he started pushing it out of his eye all the time. We went back to Strauss in June and Michael made another conformer that was more than double the size of the first one. In the beginning of July, Brady started turning the conformer the wrong way in his eye and made his eye really red and irritated. We were told to take the conformer out and leave it out until the new one could be properly fit.

He had an appointment on July 14 to go under anesthesia so that Michale could make a mold of his eye so they can properly fit a prosthetic. The whole procedure took about 15 minutes. Dr. Merriam was there to get a better look at Brady's left eye and he determined Brady's vision in that eye is fine for now. We have the Oneida County Early Intervention program working with Brady on his vision and also doing occupational therapy because he wouldn't open up his hands or reach for toys. Jamie is his OT and she is excellent with him. Brady's hands are opening more and more, he's learning to roll over, and he's "tracking" more things with his eye, especially toys with lights. He's so smart and his smile brightens my day. He's beginning to look more and more like his Daddy.

As for me, I feel like I have been on a roller coaster ride since I became pregnant with Brady. I cannot believe that it was one year ago that we found out that I was 9 weeks pregnant. Anyway, since he was born in January, I have had a lot going on. I started going back out to Cleveland for more tests in March. Those tests were for my lungs and I had to go back to Cleveland in April for more tests for my liver. I took copies from the PFT's in March and sent them directly to the disability office so they could see the current results of my lungs function. That must have helped, because I was approved for disability in the beginning of April.

While I was in Cleveland in April, not much happened. My Mom came out there with me that time. We were watching Deal or No Deal on TV and there was a girl named Ally on there who had just had a double lung transplant at the Cleveland Clinic in January. She, like me, also has Cystic Fibrosis. She looked really well for only having the transplant in January. I so want to feel like that again! Ally ended up winning $124,000!!

In June, Brady went to the genetic doctor and everything is fine genetically. They did chromosone testing and that came back normal. I joke with people saying that Brady is the first in the Prince family with papers stating that he is "normal." This is the appointment where it was determined that he could benefit from Vision and Occupational Therapy. I was also back out to Cleveland in the end of June with my Aunt Sally and my lung function was down from March, but I still wasn't placed on the list. They wanted me to come back out during the time that Brady was going to have his eye procedure, and there was no way I was doing that, so I cancelled those appointments and they were re-scheduled for August (this month).

Throughout the summer, Brady has continued to do well and is getting bigger. He has had a few more appointments with his pediatrician and eye doctor, and Jamie continues to work with him for occupational therapy. Sarah, my cousin, has been staying with us to help me around the house and with Brady. I'm getting too sick to do it all by myself during the day. She has been a great help so far.

In the end of July, I was admitted to my CF hospital in Syracuse for coughing up a lot of blood and running fevers. Dr. Sexton didn't feel comfortable doing the embolizations in Syracuse anymore since my lungs were getting worse, so I was flown, by medical flight, to Cleveland Clinic on August 2, 2006. My Aunt Sally had already headed out there and was there when I got there. She kicked butt and got the doctors moving on a lot of things. They had their huge meeting to talk about my case and they sent my case to the Ohio Board for approval to be listed for the transplants. The Interventional Radiology team in Cleveland did the embolization to stop bleeding in my lungs, and after a few days, the blood was gone again."

So, now you can see some of the stuff I started to go through as I was getting sicker. Taking care of Brady was not easy. I had too many infections, I was couging a lot, bringing up a lot of mucus, and overall not doing well. It was only to get worse from here.

Thursday, August 19, 2010

Newborn Brady! You may need tissues.

I know that it has been over a year since I have written on this blog. What can I say other than I have been really healthy and busy since I had my bilateral lung and liver transplant in 2007?! I am going to continue where I left off and talk about immediately after Brady was born and the months following.

After the doctors finished "tying" my tubes and closing me up, I was taken to recovery. There, the nurses monitored me to make sure that I started to heal and that I had no fevers, bleeding, heart issues, and whatever else after this major surgery. I had family memebers come in to tell me they had seen Brady and that he was doing great and that he was a tiny, handsome baby who looked like a little man. My sister, Barb, had taken some pictures with her digital camera, so other than seeing Brady before the doctors took him away, my first time seeing him was in a camera screen. I cried, I wanted to hold him so bad. He looked perfect, he was my and Nate's creation, and I wanted to hold him close to me and never let him go. Yet, I had to wait, while everyone else got to see him.

Once I was recovered enough, I was taken to the NICU to see Brady. He was so precious and looked so fragile. He was breathing without the use of oxygen or a ventilator, which is great for being seven weeks premature. I got to hold him for about 10 minutes before I had to put him back in his little bed, with the lights that were keeping him warm and keeping the jaundice at bay. He was so tiny, I had never held a baby that tiny before. I couldn't believe that he was finally here and that things turned out much better than expected. I cried, any mother would. I'm actually beginning to get teary just writing this because I remember the feeling all too well. Some of it was fear of the unknown...I didn't know what was going to happen to me, if I would get listed and get the transplant on time and get to be a Mother, or if Brady would just have Daddy to love and care for him. Either way, he would be loved by many, many people.

After just staring at him for a little while longer, I was taken to my room to get some rest. I know that I layed there, but I don't remember if I slept or not. I remember that it wasn't much longer and the nurses had me up and walking around. They thought that they would just have me walk a few feet, but were surprised when I walked around the whole maternity ward. I wanted to get stronger, I knew that I had to. When I got back to my room, I was starving from not being able to eat. I ate some food and wanted to go back to the NICU to see Brady. I didn't want to be away from him. After a brief visit, I went back to my room for the night, and fell asleep crying. Not because I was worried about Brady, but because I wanted him by my side like all the other mothers had.

The next morning Brady was not in the same nursery. He had been moved from critical care to a "less care" nursery in less than 24 hours! Sometime during my visit with Brady, Dr. Sexton came in because I wasn't in my room when he went to check on me. He looked at Brady and got teary-eyed. I'm sure he was happy that things turned out so well, when just a few months earlier, he had told me not to go through with the pregnancy. I spent as much time as I could with Brady in the next couple of days. People were allowed to come see him but we could only have 2 people at a time in there. The only people allowed to hold him were parents and grandparents, and it wasn't even for more than a few minutes at that. When in the nursery, you would walk in and see Brady in the "incubator" with this little cloth thing over his eyes that looked like sunglasses, to protect his eye from the lights. He was hooked to monitors and had an IV in his arm for nutrients. He wore only a diaper, so clothes didn't get in the way of the monitors and IV. He looked like a little old man, with wrinkly skin, who had room to grow. He was tiny and he was handsome.

Over the next few days, Brady continued to progress, and I continued to hold him when I could, change his diaper when allowed, help with his feedings (which were done by putting a tube down his throat and letting the formula slowly run in, called lavage), and staring at him when I couldn't hold him. He was perfect and I didn't want to leave. That Friday (the 13th no less), just three days after Brady was born, I was taken into Interventional Radiology to replace the port that I had in since August 2001. Both the upper and lower loomens weren't working because it was clogged and we couldn't get the clog cleaned out. The old port was taken out of my right side of my chest and a new one was put in the left side.

I was discharged from the hospital the next day but Brady had to stay there until they felt he was doing well enough to be able to be transported by ambulance to our hospital in the Utica area. I took a little cloth that had been with him in his bed so that I could have something of his to keep close to me as I had to leave him behind. I fell asleep crying that night, with the cloth in my hand. I made the 45 minute trip back to Crouse every day to see Brady, until he could come "home." I think I spent the next few days just crying on and off because I missed Brady so much and wanted him closer to me.

After what seemed like an eternity, he was transferred to Faxton St. Luke's hospital on January 18, 2006. He stayed in FSL mainly for weight gain, jaundice, and he eventually needed to learn how to suck on a bottle. It took a while for his jaundice to go away, and at one point, they tried to get him to suck on a bottle, but he wasn't quite ready for it yet. All the while, we continued to try to see what was wrong with this right eye, because it still wasn't opening. We also found out that he has retinal coloboma (mishaped pupil) in his left eye which would effect his vision but we weren't able to tell how much at that point. It was about a week before Brady was realeased, that we were finally able to see that he did have an eye in his right socket, but it was very small because it didn't form all the way, and he would never have sight in that eye.

The day finally came where he was doing really well with all of his bottle feedings and he was able to come home. After a month of being in the hospital, Brady Michael was welcomed home on February 14, 2006...Valentine's Day! He weighed 5 pounds but he was still tiny. It was so weird not seeing Brady hooked to monitors/wires. My friend Mary came to the hospital with me to pick him up because Nate had to work, and I had to have someone with me. We got him home and it felt so good!! I was so worried that something would happen, that I kept checking on Brady constantly when he was in his crib. That first night of him being home, I didn't get much sleep because he needed to be fed every 3 hours and even when he was sleeping, he made all sorts of noises, which kept me awake. Overall, he did great coming home and he was the most perfect baby anyone could ask for.

Within the next month, we had visitors come and go and Brady continued to do well. I, however, was a different story. I was getting sick frequently and was on IV antibiotics more often than not. With having a new baby, and me having infections constantly, Nate and I decided that it would be best that I do not return to work. I ended up resigning from my position at the House of the Good Shepherd in the beginning of March and I filed for disability. I started going back to Cleveland Clinic for transplant evaluations near the end of March. Pulmonary Function Tests (PFT's) showed that my lung function was down to 20 percent.

When I returned to Cleveland, it was confirmed that my lungs were getting worse and I could tell, because I could feel the effects of it. The lung doctor that I saw that time, was Dr. Mehta. He told me that he was happy that I had a baby. I was stunned to hear a doctor say that to me, so of course, I asked him why. He told me that "Having a baby and a c-section shows how much stress your body can handle." The appointments did not bring much good news about my health, but I was still not put on the list because there was more testing to be completed. I would continue to go to Cleveland every 3 months or so, and would have to complete more tests there and at home, and then I would be able to be listed. I was so ready to be listed, get the transplant, and be the Mommy that Brady deserved.

Wednesday, March 11, 2009

The Pregnancy

August 1, 2009 is the day that I took a digital pregnancy test and found out that I was pregnant. I went into work that day and tried getting an appointment through my GP for them to do a blood test or something to make sure that I really was pregnant and to go from there. They were not much help at all so I called my CF doctor (Dr. Sexton) to see what they wanted me to do. Dr. Sexton was not in yet so I had to wait for the nurse to call him and then for her to get back to me. The nurse sounded a little worried when she called me back a little later and told me that he wanted to see me at 4:30 that evening. I told my boss that I had to leave early and of course she had to ask me why, so I explained to her that I was most likely pregnant and had to see the doctor pretty much right away. So, I left work early and made my way to Syracuse.

Dr. Sexton and I had a long talk and he told me that it would probably be best if I terminate the pregnancy because I was pretty sick and it would delay getting listed for the double lung and liver transplants. He was pretty sure that an OB would feel the same way. He ordered an ultrasound and some blood work to be done and then we would talk some more after that. Since we weren't sure how far along I was in the pregnancy, it was decided that I would have an internal ultrasound. I had no one with me and of course it was a really difficult time, so my social worker, Kim, at the clinic went to the ultrasound with me. I got down there and settled on the table and no sooner did the technician start the ultrasound, we saw a tiny little baby, swimming in my belly. I started bawling because I was so happy to be pregnant but also because I knew what Dr. Sexton wanted me to do. The technician asked if I wanted a picture and I told her of course I do. It was my baby, and depending on the way the pregnancy went, it may be my only picture. It was determined that I was approximately 9 weeks and 1 day pregnant on that day. I took my picture with me up to Dr. Sexton and I think that he was a little surprised that I really was pregnant. Believe me, I absolutely was too!!

I understood the concerns that people had and was well aware of how hard this pregnancy could be, but I didn't see how I could have an abortion when things were fine at that point. I would never know if I didn't try. The baby was a very unexpected part of me and Nate coming together, and if I had terminated the pregnancy, I would have gone through my life wondering if the baby would have been okay. At 9 weeks, the baby had normal growth and had a heart beat of 169 beats per minute. There was no way I could just give up on the baby now.

On August 11 I had my first OB appointment with Dr. Silverman in Syracuse. They also suggested that I do not go through with the pregnancy because of my Cystic Fibrosis and being evaluated for the transplants. Nate and I decided that we still wanted to go ahead with the pregnancy.

On August 25 I had another appointment with the OB and I also saw a genetic counselor to talk about the possibilities of the baby have CF. They wanted to do an amniocentesis to test the baby for CF and I told them that I didn't want it. I knew that there was a possibility that I could have a miscarriage and, on top of everything else that I was dealing with, I didn't want that statistic to deal with too. I knew very well that Nate could be tested for the gene to find out the possibilities of the baby having CF, so that's what we did. Nate was tested for the CF gene (the common mutations) and when we learned that he didn't have any of the common mutations, we were told that there was still a 1/900 chance that the baby would have CF. Either way, the baby would be a carrier of the gene no matter what because he/she would get the gene from me.

On September 2 I was admitted to the hospital because I was having an increased fever, cough, shortness of breath, and I had lost 6 pounds in one week. I didn't want to be admitted but Dr. Sexton thought that it would be best for the baby so I agreed to go in. I learned something that disturbed me during this hospital stay and it made me realize that going through with the pregnancy was the best thing to do. Dr. Sexton had talked to Dr. Budev and Dr. Winans (doctors at the Cleveland Clinic) and they suggested that I get my tubes tied after this pregnancy because having a baby after the transplants would be way too risky. I think what disturbed me the most was if I had terminated this pregnancy, I would likely never have another chance at having a family of my own. I was upset that this was not mentioned to me while I was making my decision to go ahead with the pregnancy or not. I now knew that I was completely justified in my decision to go ahead and have the baby. I started feeling better after a couple of days of being in the hospital and was sent home on the sixth to finish another week of antibiotics through IV at home.

September 12 I had another appointment with the OB and it took the nurse a minute to find the heart beat, but she found it. The heart beat was 169-175 beats per minute and people were telling me that normally a heart beat that fast belonged to a girl. I was hoping to find out on the 26th when I would have another ultrasound. On September 21 I felt the baby move for the first time. It really just felt like butterflies in my stomach but I knew what it was. It's really a feeling like no other. The baby moved from the left of my belly to the right and the feeling was amazing!

On September 26 I had another ultrasound to check on the baby and to make sure that it was growing properly. Everything was looking great and the baby weighed about 7 ounces at that point. The baby cooperated with the ultrasound and the baby showed that it was a BOY! I had a lot of people there with me but the funniest reaction came from my brother, Harlan, who had wanted me to have a girl. He asked the technician if she was sure that it wasn't just the baby's fingers in the way, making it look like a penis. She said that she was sure, and that left my brother disappointed. We had been keeping a list of boy names and girl names that we like and I guess that it was destiny that we were having a boy because we had a name that we agreed on...Brady Michael Prince.

On September 29 it was determined that it would no longer be safe for me to continue working so I left work on a temporary leave, expecting to go back to work after the baby was born.

Nate felt Brady move for the first time on October 21. On October 25 I was admitted back to the hospital for a staff infection in my lungs. I had some cramping in my stomach on the 27th and Dr. Folk checked me to make sure that I was not dilating and going into premature labor. I wasn't and he ordered an ultrasound for the next morning to make sure the baby was okay. The baby was in some weird position when the ultrasound was performed and he was also playing with the umbilical cord and kicking it. I got a picture of the baby sucking his thumb and it was determined that the baby was okay. I was released on Halloween to go home.

Picture of Brady's face in an ultrasound on 11/21/05

On December 5 I had an appointment with Dr. Silverman and he decided to admit me to Crouse Irving Hospital in Syraucse because the baby hadn't been showing much movement, my oxygen was low, and my breathing and cough were getting bad again. I was 27 weeks along and the doctors felt that it would be best to keep me in the hospital from that point until I had the baby. A sonogram showed that the baby was growing fine and he weighed about 2 pounds 3 ounces.

On December 20 there was an ultrasound performed and it showed that the baby was growing fine and that he weighed 2 pounds 9 ounces. The blood flow through the umbilical cord was a little slow and the doctors decided to keep track of that by doing and ultrasound every Tuesday and Friday. The doctors also were talking of doing a c-section in the next two to four weeks. On December 26 I got the news that I will have the c-section to deliver the baby on January 9, 2006. There was much debate back and forth about if I could have a vaginal delivery or if it really had to be c-section. I was a little worried about having a vaginal delivery and I voiced my concerns about it...that I didn't have the lung capacity to push and that it would make me too tired. In the end, it was decided that it would be a c-section and that I would have my tubes tied also.

January 9 came and went without a baby being born...well, not mine anyway. I had my blood drawn early that morning and my platelet counts were really low and they didn't feel that it was safe for me to have the c-section with my counts being that low. I kept telling the nurses and the doctors to call Dr. Sexton because he has dealt with my labs being low and me needing surgery...he would know what to do. They didn't call Dr. Sexton, instead they had a hematologist come see me and in the end, the hematologist said that he wanted to talk to Dr. Sexton because he knew my case more than anyone. I was so happy but also so annoyed that people didn't listen to me sooner. The decided that they would do the c-section the next day.

January 10, 2006 the doctors decided that it was really necessary to get the baby out. Brady had not been showing much movement and with my blood levels being low, it was not a safe environment for the baby. I was taken up to the 8th floor of the hospital shortly after one o'clock to prepare for the c-section. The nurses ran a bag of fresh frozen plasma into me to increase my platelet count and as soon as the platelets were in, I was taken into the operating room to be prepped for surgery. The anesthesiologist gave me a spinal which wasn't as bad as I thought but it was still uncomfortable. I was situated on the table and then Nate came in to be by my side. Dr. Folk performed the c-section while Dr. Nosavich stood by his side in case there were any complications. Dr. Folk started the c-section and when he started making the incision I could feel him cutting into me so he had to stop and put some local anesthetic in to finish numbing the area. Once that settled in, he continued and I couldn't feel it anymore. There was another point after a couple of minutes that I could feel some more pain so they put some medication in my IV and then continued again.

After some tugging and pulling, the baby was out and he came out screaming with some nice and healthy lungs. Brady Michale Prince was born at 2:45 in the afternoon and weighed 3 pounds 5 ounces and was 15 1/4 inches long. I was so happy to hear that I had a screaming baby but also couldn't help that think all of these doctors didn't want me to go through with carrying him. The nurses checked Brady out really quick and then bundled him up. I got to see my tiny little thing for a brief moment before they rushed him off to the NICU. Dr. Folk then continued with the tubaligation and then closed me up. As I was being closed up, Nate went to report to everyone that Brady was finally here. He was 7 weeks early but he was breathing on his own, needed no oxygen, and no other machines other than some heart monitors. He was also a little jaundice so he needed to be under the special lights. As I was in recovery I was informed that there was something wrong with his right eye. The doctors weren't quite sure what was wrong yet, but his right eyelid was sunken in and he was not opening it. But, other than that, he was healthy and I was happy. He had 10 fingers and 10 toes and a head full of blonde hair that looked like it needed to be cut already.

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.