December 28, 2012 Appointment

First let me start by saying the past month has not been the easiest for me. We moved from North Carolina to Virginia. 'Thanks Army' I missed my family at Bragg and making new friends was going really slow.  I also had an incident when I was out at the post office and an ambulance had to be called. Thanks Jen Conley for being with me the whole time. You rock!! I had extreme pain in my chest and was not breathing as well as I should have been so 4 mg of Morphine later I was sent home.  Then I went back to the ER in congestive heart failure and had to get some IV meds to help me breathe again. Mix in a little case of the flu, some passing out and the holidays and you get me. Did I mention we have stairs now, well we don't see eye to eye every day ;0) They are my exercise I guess...

So now on to my December appointment. I was super anxious they might keep me because of all the recent issues but we just sat down and discussed my case. I first went to give blood, and boy did I give a lot. Then we went up to see Doctor Mountis and discussed the following. 

1) She was worried about how much fluid I had on and the size of my belly. She did a physical and decided I should get a stomach ultrasound to make sure I was not collecting fluid in my stomach tissue. She also raised the amount of diuretic I take daily. I now take 100 mg of toresemide and a booster pill today to help get the fluid out quicker. So hopefully this will help me not just be able to breathe easier but also my stomach to go down so I do not look pregnant anymore.

2) She was also worried I might have sleep apnea and discussed with us about doing a sleeping study. Just to see if there was anything she could do to  help me any way she could feel more comfortable and double check to see if I needed oxygen while I sleep.

3) We talked about how I have had a lot of anxiety about my health and how I worry because I am getting worse. She also talked to Dewon about the changes he had seen in me in the past year.

4) She also mentioned Farifax Hospital. It's closer to us and we could have some things done there as outpatient instead of having to fly all the way to Cleveland  And also they could help post transplant. She was even going to see if they would take my case and get their opinion on how they should handle me since I am such a "one of a kind" case. We will see what they say.

5) The final talk was about when to come in and stay to get me a new heart. We know I am getting worse and Dr. Mountis is afraid if we keep going at the rate we are going my kidneys and liver might be damaged and then I would no longer be transplant eligible. I have already had kidney problems before because of all the medications I am on and I do not want to be kicked off the list because of that. So when we go back in February if I am still not doing better they will admit me and I will stay until I get a new heart. Which unfortunately could be months. They would have me in the ICU and I would get some good medication to help my heart function. Probably nipride and also get something to help lower my antibodies in my blood so that I do not reject the new heart. This means I would go up on the list and my chances would be 100 times better for getting a heart.

It was a long day and lots to think about. I need to get mentally prepared to stay if it comes to that. I am ready to get a new heart and stop hurting all the time but I am not looking forward to months of being in a bed and being bored. But if it's time then lets get the show on the road.

I want to thank you all for reading my blog and for all the prayers and support. I write to tell my story and to maybe help someone else going through what I am. It is never easy and I get discouraged at times but my love for my family and friends keeps me going. I want to thank my husband who is with me through it all and who is the best nurse and caregiver. He truly is an amazing man. I love you, Dewon.

august cont'd

After we returned from Cleveland I was still not feeling well but at least my bowels were moving again. I did notice the second day after coming home I was having more trouble breathing and was pretty big. So Dewon and I spent the day lying around and trying find something that I could eat..chicken noodle soup won. They next day Dewon went back to work and I noticed a little while after I got up I was really having trouble taking a breathe in. So I called Tammy and asked her to take me to the ER. When we got there they rushed me back to the room and started attaching stickers, taking blood, and poking me. Not fun when you can not breathe. Shortly after Dewon showed up and the doctor came in. He said my kidney functions were still a little high and that it was showing that my iron was a little low. So they admitted me to Central Carolina Hospital and started running test on me. They did an arterial blood gas test and said my O2 level was 30% which is bad and that could also mean I had a blood clot in my lungs which made since to the doctors since I had just flew home a few days before. So the started heparin shots and ran a nuclear med test to see if there was a clot there. They also did an echo and a stomach ultrasound. The doctor came in late and  was in such a hurry to get home that she didn't even tell me all of my test results. When I asked she didn't know and then when I asked her to update Cleveland she acted like she didn't have time to do that. She also didn't  even know I was on a transplant list which told me she didn't even read my chart. This of course didn't make me happy and I kind of went off on her. You have to know you patient and read the case file to know what you are dealing with, especially in my case. So the next day we got a new doctor and she came in and explained what was going on. Well my iron was low so they gave me oral iron, my spleen is enlarged, I have kidney stone and there was no blood clot so the cause for the low 2 sat and my breathing difficulty was still unknown but there was not much they could really do about it. So you know what they means......back to Cleveland.

So this trip I was convinced they would keep me because of all the issues that were going on and I was for once ready to get this whole thing over with. The back and forth and being sick all the time is getting old and all I want is to be "normal". So the days before we flew out I updated my Will, did my care plan, Last Will and Testament and made arrangements for the house and dogs. I get so emotional every time I have to think about this and it is just something I didn't plan on doing or want to do. So thank goodness my friends took me out the night before we left and pampered me and took me to dinner where a bunch of the girls showed up. It sure did make me so thankful and a little emotional. I stop and think all the time how blessed I am to have so many friends who really care about me and are there without question to help me out and take care of me. They just make me smile and make all the bad days disappear with one night of laughs. I love you gals!!!
We flew out and went to my first appointment the 20th. Labs of course and then an ekg. I then went up stairs to see Doctor Hanna and he was just as confused on what was happening and why things had gotten so bad. He did his exam and then sent me to get a Cat Scan of my chest to see if there was any issues with my lungs. After that test we went to my genetics appointment where they went over more family history and did an exam. They still might think I have Noonan Syndrome so they have to do more tests and get more blood work to determine if it is even safe for me and Dewon to have a baby of our own. So a surrogate might be out depending on what the results are in a few months. After that I was exhausted so we went back to the room and I laid down. I don't even remember eating I just slept. The next morning I was suppose to have a lung test done but I woke up trying to catch my breathe and so Dewon canceled it and then called the doctor. They wanted me to go to the cath so we went over to the hospital and before I knew it I was on the table in the cath lab. Let me just tell you THEY SUCK! getting stuck in your neck is no fun and I have got so much scar tissue there now they really have to force it in and use their body weight to push it through, which just makes me want to get off the table and kick them  for hurting me. So after they took the pressures they said they were high and that Dr. Hanna wanted to admit me. So I waited on the table as they taped the wires sticking out of my neck down and put a stitch in it so it wouldn't move. Then to my surprise they brought Dewon in the cath lab and let him wait with me to go up to the ICU where he seen what my chest really looked like and we laughed at all the wires I have in my chest cavity. I know I am cool :) A little while later we went up to the ICU where everyone knows me now. They next few days were spent hanging out in bed getting blood tests done and doctors coming to check my pressures. They did give me some IV lasix because the cath did show I was retaining some fluid on my heart. After another day they were happy with my numbers and sent me down to the cardiac floor and took my cath out. I was only there for a day before they discharged me and sent me to the hotel. They doctors just said that I had become anemic and they thought the combination of low iron and the fluid was what they thought was causing my issues.

So we caught our Cleveland flight to Atlanta and shortly after we took off I started having trouble breathing and the next thing I knew I was waking up to lots of people around me and Dewon no where in sight. I just remember crying and asking for him. There was a PA on board and she told me I had passed out and that my blood pressure had dropped and I was having trouble breathing. So the flight attendant brought me oxygen and the PA and a nurse stayed with me. I finally seen Dewon and he was arguing with another flight attendant and then just sat down. I was trying to focus on my breathing but I was so overwhelmed and embarrassed that all this had happened. They kept asking me if I could make it to ATL or if they should do an emergency landing somewhere. I didn't know...Then a doctor came back and accessed me. I felt terrible, he had just got out of Cleveland Clinic himself and had open heart surgery. Meanwhile he was trying to take care of me. When we were about to land I heard Dewon and some old lady talking. I think she wanted him. She just kept saying how cool my "boyfriend" was. I guess they didn't notice my wedding band. It was funny though to hear him answer all her questions and listen to her giggle like a school girl. Guess I better watch my man :))
When we landed the EMS was there and they took me off the plane. We got through the back of the airport and into an ambulance. Dewon got to ride in the front while the EMT took care of me. He started an IV and ran a rhythm strip and administered some morphine. After that I was sleepy and don't remember the ride to the hospital. Once there the doctor came in and checked me out, ordered some labs and called Cleveland. Dr Mountis was back from maternity leave and asked the hospital to keep me over night to watch me. So we were admitted. Sometime after that I started having chest pain again so they gave me Demerol and put me on 2 liters of oxygen instead of 1. Well if you know me and pain medication I am a little loopy so Dewon says I was hysterically crying and wouldn't let the St. Jude rep check my ICD. And to top it off I was saying I was falling when I was clearly not, So hubs made me go to sleep. What a freaking adventure that was. The Cardiologist came in and said that he believed the hydralazine that Dr. Hanna had prescribed me was too much. So he cut it back to 25mg. It was just making my blood pressure drop and making me fall out.
So today we flew home and thank goodness no problems. I am home relaxing and trying to catch up on sleep. This last few weeks have been too much for me and if I can just get a break I would greatly appreciate it. Way too much excitement for me..... So this week I plan to relax, see a few friends and just try not to have any hospital visits.

As for follow ups I go back to Cleveland the 17th of September and I have to have blood work twice a week for 6 months.  Continue my low sodium diet and try to eat more foods with iron in them.

August 2012

Not a good month for me at all......

I will brake it down in two posts because it is way too much.
My birthday I had a lot of issues. I thought I had got a virus and was feeling cold all day with body ached and not breathing well so I stayed on the couch all day with water and watching Disney movies. I think actually the movies watched me most of the day. The next day I was feeling a little better but still very weak and had body aches. So Dewon tried to get me to eat but it just made me nauseated every time I smelt food. So it was another day on the couch sleeping mostly. The following Monday I woke up not able to breathe very well at all and having stomach tightness. So since Dewon was at work my friend Ashley drove me to the doctor because I just couldn't breathe and was at this time having bowel problems too. The local doctor ended up saying I was constipated and prescribed me some medication and an enema. He also did some blood work just to be precaution. After the medication that night I felt a little better but still wasn't really having a bowl movement. Well the next day Dr. McConville, my local doctor, called and told me that I was in kidney failure and that I needed to call Cleveland immediately. This was a blow to me and I went into panic mode. I called Dewon to tell him, then called my dad and just broke down. For the first time I questioned everything and wondered why this could happen to me when I try so hard to take care of myself. Now I am no saint and over due it from time to time but I like to be independent "run the streets" as Dewon says :) I think between him crying and me freaking out it just took a toll on me. I then called one of my best friends Renee to tell her and cancel our pictures and within an hour she was at my front door hugging me. I pretty much have the best friends in the world cause shortly after Cara was there too. They listened to me freak out and helped me call the doctors to schedule everything and find out what to do next. Well Doctor Hanna wanted us to come to Cleveland immediately so we bought tickets and were packing up that night. Thank goodness my friends are so great cause they just took over and told me to go take care of me. And little did we know that night we would have a "mesican" come visit us too lol. Luis and Tammy came by and of course made me laugh and put me in a better mood. I am so lucky!!

The next morning we flew to Cleveland and went straight to the hospital. Doctor Hanna was there waiting for us. The first thing he did was send me to the lab to get blood drawn and then weighed me in. I had gained about 5 pounds within a week which was not good. He then went over everything that happened and went over the reports from my local doctor. He said they my kidney functions were so low because I was on too much medication and it was causing my kidneys to fail. My potassium was also high and this is very dangerous for a heat patient. So he cut back on all my meds and stopped a few as well. He also gave me a nasty medication to drink to get rid of the potassium in my body and put me on a low potassium diet. So with everything tweaked he sent me home the next day. This was only the beginning.....

July Appointment 2012

7/10/12

Short, Sweet and Simple

This was the shortest Cleveland trip ever. We arrived on Sunday checked into the hotel and had dinner then hung out in the room for the rest of the night. We woke up early the 10th and went over to the main hospital and seen Dr. Hanna. He by the way is cute and looks like the guy from Iron Man, Robert Downey Jr. I think is his name :) Anyways he was happy with the new medications he had put me on and I was doing pretty good overall. He made me walk with him around the hospital to see how well my heart was working and was pleased with the results. So he sent me to get labs and later that night we went home. Like I said for the first time it was short, sweet and simple.

June Appointments 2012

6/11/12

Arrived at Cleveland Clinic this morning and went straight over to the lab to get tons of blood drawn as usual. This time two techs had to draw my blood because they had to cross match me in case I need a blood transfusion during transplant. It is never fun to be stuck more than once though. My first real appointment of the day was with the women's center. We looked into having a procedure done to ensure I can not get pregnant. It is called a tubal ligation which is a non invasive procedure and I can still have a period and keep my eggs just in case we decide later to have a surrogate carry our child later in life. simple appointment and a lot to think about. If I wasn't scared of having menopause at 30 I would just get everything taken out and freeze a few eggs but I do not need another complication. My second appointment was with the dentist. They have to check every six months to make sure I am brushing my teeth and have no infections in my mouth. An infection can be very dangerous and can go into my heart and cause even more problems so I stop in and see them from time to time to get cleared. Good news! No cavities and No infections :) After that appointment I went to get an EKG and then headed to see Doctor Hanna. My appointment with him was brief. He was very happy with how I was doing and changed a few medications hoping it would help long term and make me more comfortable day to day. My last appointment was with the stress test team. I was so pumped and thinking I would do great and beat my record which is 3 minutes, I know lame, but for me that is great. Unfortunately I only lasted a little over 1 minute which really made me upset because I had been feeling so good. The crazy thing was my heart didn't even hurt it was just that I couldn't breathe. Now let me explain they make you get on this treadmill that they hook up all these wires to you and then clamp your nose and make you breathe through this mouth piece. So I am blaming it on that :) stupid mouth piece. Simple appointment and I went home the next morning.

May Cleveland Appointments 2012

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

Cleveland Appointment 2/16/2012

My appointments went great. I did good with all my tests and was declared Cancer free from the dermatology department. My next appointment was with the pacer clinic. The doctor came in and looked at my device. My device has moves slightly and is sticking up but the only way to fix it is to open me back up and move it but I chose to just leave it alone. If it is not hurting me then I say just leave it, no need to go under again. They also tested my device which I am normally terrible at but this time it was easier and I didn't cry which is huge for me.  I then met with the Genetics nurse and she went over my family history and health information. She did some research and thinks I might have Noonan Syndrome so I will be evaluated for that at my next appointment. I will also be tested to see if I wanted a biological child, if the baby would have a heart defect too. Plus we might get lucky and find where and how I got the heart defect. After genetics I went to see my pre transplant doctor and she was so excited to see how well I looked. I weighed less than I had in a year and I was not carrying any extra fluid on my lungs or heart which was great. She was thrilled with how well I was doing and that I was more active. My last appointment was for my heart cath. I changed into a gown grabbed my bear and went to the cath lab. They ended up checking my pressures three times that day because the doctor said the numbers didn't reflect how well I was doing and it didn't make sense. My pressures were worse then the last time they had checked but the doctor was ok with sending me home because I had been doing so well. I try not  to let the statistics and number get me down and just live day to day. I know the numbers look bad for me but I have always been a person who fought and made it through anything a doctor told me I couldn't. I guess that is the stubborn in me to prove someone wrong. So I am taking it one day at a time. Overall I have been doing great and am happy to be home. I go back to Cleveland on May 22-24 for a lot of testing and re-evaluation and hoping for a good outcome again. Until then....

what became my happily ever after

Two years ago I was released from ICU at Shands (UF) Hospital. I had been rushed to the ER by my fiancé at the time and admitted a week prior for heart complications and pre-transplant evaluation “again!” After all the tests and being told it was time to start finding me a heart so I would not have to keep struggling and fighting we were then faced with huge decisions. January 10th 2010, on Dewon’s R&R from Iraq, after being discharged from the hospital we drove to Tallahassee Florida with his family following behind us. When we arrived to my parent’s house a Wedding was all ready for us. We had less than two hours to be ready and I remember thinking “how the heck did they do all of this” A few hours later after make-up, pictures, and kisses from my new husband I was married to the man of my dreams. It wasn’t the wedding we were planning but it was perfect. I had my family, his family and close friends and couldn't have been happier.

Later that week we were told we were dropped from the Shands list again! They told us that I had too many complications when it came to actually transplanting me. Between my high pressures in my heart and lungs I also had high percentage of antibodies in my blood from prior blood transfusions. My body had a 93% chance it would reject a new heart and Shands didn't want another death on their hands. They were not comfortable with the case so it was time to look into other hospitals.

Luckily for me in March of 2010 Cleveland Clinic took my case after another long week of pre- transplant evaluations. The doctors at the clinic were so open minded and were so positive about transplanting me and even thought a lung transplant would not be necessary.  Because of my condition I have to have a peds and an adult doctor to do the surgery and both were on board and ready to get me on the list. On March 29th 2010 I was placed on the transplant list with Cleveland Clinic. I remember being so nervous and when I opened the letter I was too scared to even read it. With my parents close we opened it and I was "accepted" and it was a huge weight lifted off all of our shoulders. Today I continue to wait, and I am in no hurry, God will know when it is the time and I know I will get through every obstacle because I have so much to share with people and a family that I can't leave to mourn me. So I continue to fight and thank Cleveland Clinic for taking my case and giving me hope again. And of course my family, husband and friends.

Letter to my husband:

Two years later we are both still alive, which my grandma says is the first step in a great marriage :) And I cannot thank God enough for sending me such an amazing man. Dewon I cannot imagine how hard it is to have to take care of me day in and day out. I don’t have the words to tell you how grateful I am that you are so patient, caring and loving. I know it is not easy to have to spend weeks in a hospital, pick your wife up off the ground and even have to hold me while I cry because I am scared to death and “just can’t do this anymore”. I never would have thought sitting on your desk in history class nine years ago and saying hi my name is Carmen would lead to the wonderful life we have today. I love you so very much and can’t imagine my life without you and our two crazy dogs. Happy 2nd Anniversary Baby! I ♥ you

Now to enjoy my anniversary. Till next time xoxo