Feb part 5

Friday evening I went for my CT scan. The results came back that there was no trauma to my brain besides the stroke that they already knew was there. So that was a positive thing. The rest of the night we relaxed. Right before bed I got a visit from a young lady who had just had a heart transplant earlier in the week. She looked amazing and was sitting up in a wheel chair and smiling. We spoke for over an hour about transplant and what I could expect after transplant, her personal story, my story and also her family and boyfriends experience through her transplant. It was so nice of her to come talk with me and it really put me at ease. The similarities that we had were crazy. She has the same exact heart disease that I do, she had an ICD , and a lot of the same problems that I am having now. The only difference is that she does not have the antibody complication like I do.

It is a scary thing when you feel like no one can relate to you, and even though my family tries they will never know what I feel. She however knew exactly and it was the most amazing experience to relate like that and feel the joy she and her family had. This is what it all comes down to. Hearing her say how great she feels and how relieved and happy her family was just made my heart smile. Her dad even gave me a hug and told me good luck which made me almost cry. It's funny how my heart disease has brought on some of the worst moments in life and how I fear so much of the unknown. But then they have also brought me so much love, kindness and so many relationships that just make me feel undeserving of it all.

Saturday morning the doctors came and and wrote my scripts and signed my discharge papers. With the following orders. Increase my diuretic medication (toresimide), come back in one month for a check up, keep phone on me at all times and have my bad packed for the day they call me and tell me they have a match, and to take make sure I know how to get to the nearest airport which is in Manassas, VA.

Sunday we flew home and so far I have been feeling pretty darn good. I have had two bad days but that is a blessing when before I was having 5 out of 7 days being bad. I am now just anxious for the call. I have probably packed, unpacked and packed again my Cleveland bag. I want to make sure I have everything I need and always think of more stuff I might need or want. I'm Ready!

Next appointment is March 4th so I will be updating you all again soon :)

Feb appointment part 4

Thursday night was a little eventful. I stood up to get on the scale and the next thing I know I was lying on the bed and a bunch of people surrounding me. I was told I had passed out and that I needed to make sure I sit up for a few minutes let the blood and oxygen get to my head and then try and stand up. They also said that I was not drinking enough so I really have to make sure I am getting the full two liters of fluids in since I am on such a high dose of diuretics. After that episode I was not allowed to get up so I decided sleep was the best choice.

Friday- Doctor Lee came around and told me he had spoke with Doctor Mountis and they had decided to let me go home. I have lost 6 liters of fluid all together and they were happy with my progress. I also got the official word that I am a status 1B. I had been waiting for the board to come back with their decision on if I qualified to be upgraded on the list. So goodbye to status 2 and hello 1B. This gives me a much greater chance to get a heart. In my blood category, I am A+, there is one 1A and 6 1B waiting for a heart. But because I have a smaller body frame I am technically a little higher because the ones on the list who are heavier have to receive a heart from a heavier person as well. So we were told to have our bags packed and ready to go in a moments notice. We have found the airport that the Cleveland Jet can fly into and they staff have briefed me on what to expect on the flight back to Cleveland. Meanwhile Dewon says he will probably be giving me anxiety medication the whole way there because I will probably be freaking out. When it come down to it I am so excited, I have been struggling my who life and have been on the list for so long that I finally feel like I am progressing and moving forward. We will also try to set up with Inova Fairfax to start my plasma  floresis. Hopefully they can do it there so I can continue to stay at home and wait for the heart. If not we will have to stay in Cleveland.

Lots of exciting and scary news to process so I am going to talk with my family and get everything set up for the big day.I am just thanking God and leaving it all in his hands. Prayers Please!!!!!

Feb appointment part 3

Wednesday night I had a weird rhythm and some chest pain that followed. When I called the nurse everyone started freaking out and they called the response team, meanwhile Dewon went to the ice machine and got me ice water to stick my face in. While the nurses and doctors were freaking out Dewon got me settled and with the help of placing my face in the icy water my arrhythmia went away. By the time the response team got there they had nothing to really do and I guess the head guy was mad and was telling me I had the arrhythmia because of anxiety. So after I told him how I felt about that (it was not nice) he left. There are a lot of things I don't know but one thing I have become an expert on is my heart rates. I can tell you if its fast, slow, skips a beat, anything. After I calmed down I ate a late snack and went to bed. Since I have to be NPO (no food or liquid) after 12 am I always eat a snack  my favorite is hot Cheetos :)

Thursday- I woke up bright and early. The night before I had to wear a pulse oximeter to see if my breathing fluctuates as I slept. Hopefully I should know those results on Monday. At 9 am I went down for my heat cath. The doctor who did my consent didn't want to give me Ativan (anxiety medication) so when I went down to have the procedure the nurses could tell. So after a kiss goodbye from Dewon they got me back to the room. Then quickly gave me some versed and started the procedure. I guess I was a great patient this time because before I could ask any questions it was over and they were taking the swan out of my neck. When I got back up to the room Dr. Lee was there and he said that there was no significant change in my pressures but there was more fluid on my heart. He also said they had not heard back about my status change with unos and that he was going to discuss with Doctor Mountis about starting the plasma floresis to clean my blood of the antibodies.   He said he would come back and tell me what they had decided but he never did.

I also spoke with a transplant patient who had the plasma floresis and she said it was very easy. You sit for three hours and while the machine cleans your blood. She said she had no side effects besides being tired after and that if she did not eat before the procedure she would get nauseous. So that helped ease my mind about the whole situation.

The Psychiatrist for transplant also came to check in on us and explained what would happen post transplant and answered some questions that we had. She is going to set up so I can talk to two ladies who just had a transplant in the last month so that they can explain what I will be going through in the early stages of transplant and what to expect.

Now Dewon and I are watching TV shows and trying to relax, I finally feel better so we did go on a short walk to get me out of the room. But I am still very tired so I am off to bed. Keep the prayers coming. Thank you all!

And don't forget Congenital Heart Disease Awareness Week starts today.

February 2013 part 2

Tuesday- I had a horrible time trying to sleep. I was so physically drained and restless that I could not fall asleep and just broke down. So the doctors gave me some ambien and shortly after I had a great nights sleep. Although I was rudely awakened at 4:30 am for a lab draw. Then followed by an x-ray and an echo. The echo was neat because they injected me with a dye so that my heart would grow in the pictures. It was extraordinary. In the afternoon they took me to get a device check. If you know me you know that I hate device checks, the feeling is terrible but I did very well this time, no crying and I let them test all three leads. The rest of the night was pretty calm. No chest pain, even when I walked around, and I even got to take a bath. We watched some movies and Dewon cuddled with me, he really is an amazing man, I am so very lucky!

Wednesday- Another early morning lab draw followed by the cardiology fellow coming in to tell me I had lost some weight and was looking ten times better than when I got admitted.  They are going to continue the lasix for another day and then try and get me scheduled for a cath tomorrow. So after the cath I will know what they are going to do with me long term. I also had a visit from two men who had already had transplants. Hearing their stories makes me a little more nervous. Neither one had a transplant until they were a 1A status and were both coding and basically dying. One of the guys said his ejection fraction, which is how your heart is squeezing/functioning was only a 3 before transplant. Well mine is 22 so I guess I have a little ways to go...Plus I thought I was already doing terrible due to loosing my independence, being tired and hurt all time. To realize most people are 100 times worse and dying before they are found a heart is not something I am looking forward to. They also stated I have to be mentally prepared for everything I am going to go through, that the transplant fixes one big problem but after there are other problems that come along with the new heart. I think I am am prepared but who really knows. Mentally, I am not going to lie I have bad days when I cry and am so utterly pissed that I am sick. Which according to my grandma I am allowed to have 3 "I feel sorry for my self" days a year. Then other days I am so excited to be able receive a new heart and start a new life that the bad days are just an obstacle. Plus its exciting to think one day I will be healthy enough to be able to chase after our kids makes everything worth fighting for. So all the small things in life like childish petty women, not being able to walk in the grocery store and not being able to drink aren't even worth my time. The things that make me who I am are my family, friends and the wonderful team who took my transplant case three years ago. For that I am truly grateful and know that I will get through this whole thing as a healthy, happier and more humbled person. That's what life is about!

The doctor came in as I was writing this and talked us. He said that they had submitted the paper work for me to be moved up on the list to a 1B YAY!! and they were also seriously considering starting me on the transfusions to help remove the antibodies in my blood so that I would have a better chance of getting a heart and not having instant rejection. So if I get approved to be a 1B and they get my antibodies down I could even get a heart this admission, that's mind blowing! Still this is all in the first stages so who really knows until it happens. One  thing that is set in stone is I will be going to the cath lab tomorrow for the heart cath.

So prayer prayer prayers please. A lot going on and a lot to look forward to :) Thank You!

February appointment 2013

I had a rough start on my way to Cleveland. Between the army not following through and our tickets not being paid for, then an hour delay and the cab driver taking off with Dewon not fully in the car. It was not the way I wanted to start the trip but we did make it safely to Cleveland so that is a plus. After a quick meal and some tv time we went to bed early, I was exhausted!

Monday-  We started out with 6 am appointments. I had an eye appointment. Let me state that the Cole Eye Institue is amazing. It's a whole building just for eye exams, surgeries and lazer treatments. Although I did not like the tests. The optometrist scares me and I hate the drops and eye tests. I did however pass with flying colors besides the damage to my eye from my stroke. I have absolutely no right pereferial vision. The rest of the appointments flew by. I did stop to eat some eggs and fruit and then continued on to the transplant center. Dr Mountis was there and we sat down and talked. After a quick exam she stated that I had about 11 pounds of fluid that she wanted to try and get off. I really had not noticed I had got so big. Although I did know I was having a lot more issues. So I am admitted to the heart failure step down unit. They will give me a couple days of IV lasix and then either Thursday or Friday they will do a heart cath. Depending on what the cath reads depends on if I stay in hospital or go home again. She also said she was going to meet with the transplant board this week, I believe they meet on Wednesday and ask for me to be moved up on the transplant list to a 1B. This gives me a a much greater chance of getting a heart so that's exciting and a little scary all at the same time. It seems like Dr Mountis thinks I am getting real close to transplant time because she also is going to speak with the pediatric surgeon who will be assisting in my transplant to make sure everyone is on board and they have a good plan on what to do next with me to make sure I have a good healthy future.

So Dewon and I are relaxing, he is playing a game and I'm coloring, painting and trying not to be board. Meanwhile peeing like there is no tomorrow. I did have some chest pain tonight but with oxygen and some pain medication I am feeling better and ready for bed.

I ask for your prayer not just for Dewon and myself but also for the physicians.
A huge thank you to the Conley's who have taken on our fur babies and everyone who has called and text me. I love you all and am so thankful for your continued support and encouragement.