donor letter

So, I debated on if  I should share this part of my journey but I then remembered why I do this blog in the first place. I write down my experiences so that I can hopefully help someone else in the same position that I was in. So here is my letter. It took me awhile to write it because who really knows what to say to someone who has lost someone  they love? Although, I knew deep down that no matter what I had to let them know how thankful I am.

Something else I didn't share was one night I just broke down. I am so overwhelmed with how great I feel and how I was given a new chance at life but then it hit me how much my donor's family must miss their loved one. I grieved for them and vowed I would do everything in my power to take care of this new heart. I also shed tears because I just simply couldn't believe all I had been through and that I made it through. It was an emotional night for me and almost every day I think of my donor's family and include them in my prayers. I hope to hear from them soon.....

Dear Donor Family,

                Hello! My name is Carmen. I live in Virginia with my husband and two dogs. I was diagnosed with a congenital heart disease at 11 months old. My whole life I have been limited to what I could do. I have had many surgeries and procedures to fix and maintain my heart. Most of my memories from childhood are of hospitals but my dad tells me that I was a fighter and always made the most of the life I was given. About six years ago I was told that they could no longer maintain my heart and that a transplant was necessary in order for me to stay alive. So I finally found a wonderful transplant center in which I waited almost 5 years for a match.

In the meantime, life was hard. I could not walk very far without getting short of breath. I had constant occurrences of pain or passing out from simple daily tasks. So I thank you from the bottom of my heart for your generous gift. Because of your donation I no longer have to use a wheel chair, I can now exercise for the first time in my life, and I now have some sense of independence. It is amazing how much life has changed and how wonderful I feel. I hope to go back to school next year and pursue a career with the American Heart Association so that I can help others with similar heart conditions.

I once again want to thank you for donating your loved one’s organ. I am so sorry for your loss but I promise to take good care of this heart. My family and I are extremely grateful that I now have the chance to live a full and “normal” life.

                Sincerely,

    Carmen

biopsy number 6

So this was another short trip. Day 1 was easy. The only test I had was an echo. During the test however, I did cry a little at the sight of my new beautiful heart. It's function was perfect! Although I do think it will take me more time to get used to the sound of a normal heart. I am so used to the swoosh and thump beat I that I have had my whole life. Plus I had a murmur too. I am still in disbelief that everything is going so well so fast.
Day two we had the normal day. Admitting, labs, ekg, and x-ray. Then finally to the cath lab for the biopsy. It went really well and they even checked my pulmonary pressures and said that was good too. After I seen the CNP and this is the new game plan:
-back in three weeks
-decrease iron to one time a day
-decrease prednisone to 17.5 mg a day
-increase the pravistatin to two times a day
-end acyclovir med after December
-add lisinopril due to high blood pressures recently

They were thrilled because my heart was functioning great, ejection fraction was good and the tricuspid valve had settled and there is no longer any back flow from the new heart like there was in my old one.

They also want me to have another head ct, a sleep test and a 24 hour holter monitor test done as well.

So that's it! Thanks for the prayers everyone. We are home safe and I am ready for bed. Good night!!

Biopsy Number 5

Dewon and I went back to Cleveland for a check up and biopsy. We really should by now own part of the hotel and hospital as much money and time we spend there. We got up early and went over to admissions and checked in. Then the usual, labs, ekg, and x-ray. Next we made our way up to the cath lab. I was met there by Ms. Chris who told me I would be going in soon. So I took my meds and a pregnancy test then went straight to the cath lab. This time it went super quick. The doctor was excellent because before I knew it I was being taped up and was ready to go. Next we went to see the nurse who examined me. She told me I could drive again but only short distances for now. That I was healing well and I wouldn't have to come back for three weeks. I was so proud of myself because I had walked almost the whole day in the hospital and was not tired at all.

Got my results...and I got another Zero, No Rejection!!

Today December 4,2014 I exercised for the first time. I was able to do 2.3 miles in 12 minutes. I was so proud of myself. However, now I am tired and ready for a shower and bed. Yay, for my first of many milestones in my recovery with my new heart.