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.