Loss of Indpendence

In the last six months I have come to a realization that I am no longer independent. That I can no longer go where I want, feel free and not have to ask for anyone's help. I constantly feel bad for my friends and my poor husband who have to take care of me and I feel even worse when I have to cancel plans because I simply can't get out of the house. I spoke with my advocate ,but to me he is more like my sponsor like at an AA meeting. He has already been through a heart transplant and gives me advice and checks on me a few times every month and he says its normal and I am only going to get worse before things get better. But every time I hear those words I want to scream. I feel like I am already bad and I can't foresee it being any worse when I can no loner clean my house, climb a flight of stairs, walk in the grocery store or be intimate with my husband without me being doubled over in pain or can't breathe. I get so frustrated with myself but I know I can't really do anything about it. I think back when I was in high school and I pictured this life where Dewon and I would be married, have a big house with kids and me running off to the OR every day to assist with other heart patients just like me. Sadly I will never be able to fulfill some of those dreams. Having kids does sometimes make me upset but I know we will adopt one day and no matter what the child will be OURS. Not being able to have my RN and work on a cardiac floor like I always planned does make me really upset. You can ask my dad from the time I knew what a job was I wanted to be a cardiac nurse and help others and now that can never happen. I did however marry Dewon and well we live in a big house and instead of kids we have two crazy furbabies who keep me on my toes :). And although I have loss my independence I have strength and faith in its place. I know that I will always be humbled by the people who are there for me and so very thankful. I'll just leave it all in God's hands and cherish every moment I have good or bad.


Update:
I have a follow up with Inova Fairfax next Friday with Dr. Desai
We leave for Cleveland February 3rd, my appointments are the 4th and I will update if I get admitted or not the 5th. I want to ask for continues prayers please. Thank you! Also feel free to leave me a comment, I made the blog for support and to help others going through the same health issues.

January Admission (Fairfax) 2013

All week I really was just not feeling well and having a lot of chest pain. The chest pain is not a new thing but having it hurt so bad that I am throwing up and having to take a lot of pain medication is. So Tuesday around noon I started not feeling well all of a sudden and the pain came on fast. I remember calling Dewon to tell him and somewhere between talking to him and lying down on the floor I passed out. I woke up later on the floor of the kitchen with Layla lying beside me barking. I guess she knows now when something is wrong because Dewon said he heard her start barking the minute I passed out. So after Dewon got home I laid down and took some pain medicine. Hour later my pain was still there and I was not able to relax enough to take a nap. Later that night I still had the pain and started throwing up. Everything that I ate and drank came right back up which was not good because I wanted to take more medication but knew I couldn't on an empty stomach. After an hour I decided enough was enough and went to the ER. This time went to the hospital in Farifax called Inova. My doctor had told me when I was there in Cleveland the last time they were really good and would know what to do with me. After a lot of nausea medication (zofran) they finally gave me some pain medication (morphine) because I couldn't bare the pain anymore. I hate taking the stuff because I get all crazy and feel like I am falling. It is not a fun experience but it does take the pain away. I was admitted that night. 

The next morning I met Doctor Desai who is a transplant doctor at Inova. He and my transplant doctor are good friends and he was happy to take my case and work with Doctor Mountis in Cleveland. After we all talked he decided that I had some fluid on me and he wanted to give me IV lasix to get it off and manage my pain. The first few days at the hospital I had pain a lot and was pretty doped up. They talked about putting me on a medication called Ranexa to help my heart out and that would eliminate the pain as well. After considering that medication they decided to hold off on it until they spoke with my Electrophysiologist ( my pace maker doctor). The medication can change your heart rate so the doctors want to make sure it is not going to cause me more problems. After a few days of IV medication I lost a little over two liters of fluid (5 pounds) and felt much better. Plus my chest pain had stopped and I could function again. Happy with the results they let me go home on Thursday which was great because we got to celebrate our Anniversary.

I go back to see Dr. Desai in a week and I go to Cleveland on February 4th. At my Cleveland appointment they will do another heart cath and we will find out if I have to stay until transplant. So I am asking for prayers please. Although I am excited to get a new heart I am also nervous about staying and the whole transplant chi-bang. Thank You!