Here we go again...
Monday May 21 Dewon and I flew out from Fayetteville to Cleveland. Nothing exciting. We arrived at the hotel and went straight down to get food. After we ate we just hung out in hotel and went to bed early.
Tuesday May 22 I had early appointments. We went over to the main hospital and I had an EKG and labs done. I then went up to see my EP doctor. I first had a regular device check, which I hate, and ended up yelling at the technician. I always ask, please let me know before you start testing, because I feel every change. I can tell you when my heart is 2 beats slower or 50 beats faster. I am very sensitive to the change and it freaks me out. So the guy started the test and said he would tell me when he started testing the rates and leads. Well of course he didn't tell me and thought I wouldn't feel it. So I in turn screamed for him to stop and it pisses me off when I ask for something and they don't listen. All with tears in my eyes. Not a good start. I then seen my doctor and he seemed for happy with how my device was working and said I looked well and happy. He was glad I had been more active and after a quick check he said great! He was happy with my progress and told us I wouldn't have to come back to see him for a year. Great news!!
Wednesday May 23 I went in to see my transplant doctor. After a long wait we finally went back and were "checked in". My physician came and looked me over, asked a few questions and then started making a worried face. This instantly punched me in the stomach because I knew what that meant. Dr. James told me that I was carrying quit a bit of fluid and because my pressures were not good at the last visit she was afraid I was in heart failure and if we didn't get a handle on the pressures in my heart now that the possibility of me being transplanted would be slim to none. So after a long talk we headed for admissions to be admitted into the hospital. The plan being to get the extra fluid off and just check my heart and lung pressures again. I was admitted around 5pm that night to a step down unit and was sure I would be in and out, no big deal. I thought they could just give me some diuretics and send me on my way.
Thursday May 24 I woke up to nurses poking me. More labs and an echo. Around 2pm I ended up heading down to the cath lab. I laid on the cold table and just remember being so nervous. As the doctor went ahead with the procedure I watched though a little tv they have beside the table. He finished up quickly and told me how proud he was that I didn't jump off the table or cry the whole time. Yes, I am a huge baby and haven't been the best patient when it comes to heart caths. He then went straight to the phone and called the transplant doctor to tell the team the news. Just in case you are confused I have 4 transplant docs who see me. Dr. Hanna, who looks like Robert Downey Jr. We call him Iron Man :). Dr Tang who is very frank and often makes me cry. Dr. Mountis who I love and is my main physician and Dr. James, who is new but she seems very nice. He then came back and told me that I would be going to the ICU immediately and my pressures were even worse than the last time. I would be started on an IV drip called nipride and the swan cath would stay in my neck. Let me just tell you this thing is a big pain in the ass. It hurts and is impossible to sleep with, just no fun at all. They rushed me up stairs and I was bombarded with nurses. More blood work, lines being put in, IV poles, meds just chaos everywhere. This of course mad me upset and the worst thing was they wouldn't let Dewon come back. I was an absolute mess. Later they let Dewon come back and Dr. Tang came in to talk to me. He told us I would be staying in the ICU and he was not sure how long. He went over what could happen if my pressures stayed high, which also meant there was a possibility of being taken off the transplant list. He wanted to start the nipride and get an aggressive handle on things. That night I pretty much didn't sleep. The nurses bug you every hour. They take blood every four hours and the machine is always making sounds. I was miserable.
Friday May 25 After little sleep I woke up to doctors in my room tugging at me. They had come in to talk to me about my options and for us to decide what is the best plan for me. Now any physician wants their patient to keep their own heart as long as possible but there is a small window on when is the right time. They try to find the right time when you are not doing so well but also not doing so bad that death might be knocking on your door. I have never understood it but have learned to live with it. I mean after being on the list at Cleveland for a little over two years, hey I am not sure I am really ready for it anyway. Dr. Tang went over his thoughts on me staying in with the nipride drip and seeing if my pressures would go down and if they did try other medications that weren't so invasive. But also reminding me that it might come to the point where I have to be on the IV meds to sustain my heart function. Also that it might be time where I have to stay in the hospital until transplant time. After a long talk AGAIN he left and I just looked at Dewon and cried. The fact is I know all the statistics and facts about transplantation. I know I need it and I know the long road ahead once I do get a new heart BUT it is definitely not something I want to do, just something I know I have to do. I try to be strong but I am honestly scared to death. I just never thought at almost 24 years old I would be dealing with this.
Saturday May 26 When the docs came in they told me my pressures were down and they were happy with the progress and that they wanted to start me on an oral medication to keep them down but this way I do not have to have the cath in my neck. That after noon they stopped the nipride and started me on lisinopril and hydralazine. Well later that evening I had a bad reaction and had the worst chest pain and couldn't breathe well. The nurses came in and ran tests, gave me some good pain medication and oxygen. After about an hour I was finally felling better, loopy but better. The nurse came in and told me they had figured out why I had such a bad reaction and started me back on the nipride. I guess my body didn't like the fact that they took me off the nipride cold turkey and said they would slowly wean me off the nipride while still taking the oral meds. I have to admit I feel awesome on the nipride. My body and heart feels young and energetic again. The rest of the day I just colored, played yatzee and got to finally sit in a chair and get out of the hospital bed. Sounds lame but being in a bed all day and night in the ICU is depressing.
Sunday May 27 I was finally weaned off the nipride and it seemed like things were going well. Until they got labs back that my pressures had went back up. The doc came in and told me he had to adjust my meds again to get my pressures back down. And that if they stayed down there was a possibility of me going home. I did have another case of chest discomfort but I think it was mainly because I was so stressed. I wanted to get out of the hospital so bad and was missing home, my friends and pups. I was worried the increased medication would not work and I was basically relying on prayers to get me through. Later that night when they drew my labs the nurse came back and told me the pressures had went down again and the meds were working. I was thrilled!! And the Dr. Tang said I could be moved to a step down unit the next day if I did alright through the night.
Monday May 28 I woke up early waiting for the doctors to come through for rounds anxiously wanting to be told I could be moved out of the ICU. They came around 11am and said they would be taking the cath out and I would be moved to a step down unit. They nurse came in shortly after and took one of my IV's out. I unfortunately had to have two being in the ICU and started to take out my line in my neck. Let me tell you that taking the tape off is one of the worst parts. They use so much adhesive to keep the catheter in place and to keep infection out, but my goodness it hurts when they pull it off. After getting all the tape off one of the lines got stuck, which didn't make me happy at all. After a few tries the nurse finally came out. OUCH!!! That afternoon I got taken to the step down unit. I was happy. In that unit I can get out of bed, walk around and they have better snacks :) By the way the hospital food sucks!! I spent that night walking the halls and looking at the amazing views off the balcony window. It was nice to feel like a person again.
Tuesday May 29 I woke up to Dr. James telling me that I could go home since I was doing so well. Her an Dr. Hanna came to tell me about my future options and their new plan on how to treat me. I from now on have to come back to Cleveland every two weeks and have to get blood work every week. I have to maintain a certain weight and keep track of my blood pressure. Hopefully with the more frequent visits they can handle my heart failure better and try to keep me out of the hospital. Also, that if things got bad again it was time to stop playing around and keep me until i received a new heart. They changed my medication one more time, just the dosage and also wanted me to have my ICD changed. They wanted my heart rate to be 90 bpm hoping that this would help my heat get more blood and oxygen to my heart and help me function better day to day. We waited all day until they finally got me into the device clinic at 4pm where they tried to change my heart rate. I unfortunately did not do well with the faster rate but did meet them in the middle at 85 bpm. I went back to the step down unit where the nurse was waiting for me and after 10 minutes and a signature I was ready to get out of there. Extremely happy we went back to the hotel and had a nice dinner. I then went to sleep, exhausted from everything and needing the time to just relax.
Wednesday May 30 We flew out of Cleveland and were home bound. I was beyond excited and just thinking of sleeping in my own bed made me smile. I know I am a nerd. We got home around 330pm and by that time I was exhausted from the trip. We pulled into the house and Dewon opened the door. I walk in and my living room, which I had been meaning to paint for weeks, had been painted and it was all decorated. There were beautiful flowers and a little note. I instantly started crying in shock. I have never had such amazing friends who would take the time and do something so nice for me. I am truly, truly blessed to have them and have such a supportive group of women who love me just as much as I love them. What I go through is rough, and I am tired and just want to give up at moments but then I look at my husband and this beautiful life I have, my friends who are just simply THE BEST!! and a family I love to death and realize I have to make it through this. The fight and struggles are easier when you have a support system that backs you and unconditionally loves you.
I once again thank you all for the support and prayers. They work, I am living proof. And thank you to my amazing husband who is there through it all. I know it is not easy, stressful and I know I am a moody baby while in the hospital. To my EOD ladies who have prayed and kept me in their thoughts and prayers everyday. Special Thank you to Cara, Renee and April for what you did to my house. I don't know how to ever repay you. I am home, happy and can't wait to enjoy my summer :) xoxoxo