Thursday, October 22, 2009
4:50 a.m.
I am lying here awake at 3:32 a.m. due to these crazy steroids! Therefore, I decided to update this page with my actual journal entries. As I stated in my background story, the entries in black below are email updates that were composed by my mother-in-law Beth throughout this whole ordeal. Thank God for them because it has all begun to run together to me. So now that I have
used her updates as a "background crutch" to those of you interested, I will now be writing all of my own personal journal updates as often as possible.
Let me begin where I left off on October 6th. I was taken down to the O.R. around 4:30 p.m. that day, and I was not nervous at all. It really helped me to talk to two other young transplant patients Toni Wild and Jamie Napolitano. I did not wake up from the surgery until around 4:30 a.m., and I wanted that tube OUT of my throat! I felt like I was suffocating! They had me strapped down so that I could not pull it out, so I began banging on the bed to get someone in
there. Within about an hour they were able to pull it out, and I could breathe!
I was sooooo thirsty, but because of the anesthesia I could not have anything other than a couple of ice chips. I begged the nurse for more, and he finally gave in and let me have some, which I in turn threw up. I really did not feel much pain at all, just frustration. The next morning I was able to sit up in chair! I had three stomach tubes and pacing wires in my stomach, a foley catheter in my bladder, and a few IVs. I kind of had to shuffle around slowly. All of these came out about four days later.
When they came to do my first echo, my excitement to see new, normal numbers and images was quickly deterred by the excruciating pain from the pressure of the probe. I screaming in pain. It was a horrific combination of burning and pressure. They gave me two milligrams of Dilaudid. For those of you who do not know, it is eight times more powerful than Morphine but is
not addictive. Needless to say, this sent me straight to the moon for the rest of the day. When Zac came in he stated that I was "higher than a hippie in a helicopter." The echo looked great my ejection fraction is now 65%, rather than 8%!!!
My old heart had become so large that the anesthesiologist called it a "big floppy heart," and Dr. Owen said it was like a balloon. Since my new heart is about half the size, it bumps and bangs around a lot because the pericardial sac had expanded so large accommodate the old heart, and it will take a while to adjust back down.
Last week after my first biopsy, they discovered some rejection due to my
antibodies. Let me just say that the biopsy was extremely unpleasant. They put a cath back in your neck, stick a wire in it, and clip five tiny pieces of your heart. Yes, you can feel it. I cried all the way through and that was after two Adavan, two Percoset, and a mg of Dilaudid if that tells you anything. I think I am just sick of stuff going in my neck. I stings, and the biopsies pull and tug on my heart.
antibodies. Let me just say that the biopsy was extremely unpleasant. They put a cath back in your neck, stick a wire in it, and clip five tiny pieces of your heart. Yes, you can feel it. I cried all the way through and that was after two Adavan, two Percoset, and a mg of Dilaudid if that tells you anything. I think I am just sick of stuff going in my neck. I stings, and the biopsies pull and tug on my heart.
I have felt up and down since then. Because of the slight rejection, they had to perform a process called plasmapheresis. This is were they treat the antibody rejection by putting a catheter in my neck, pumping out my blood, removing the plasma, replacing the plasma, and putting the “new blood” back. The process takes 2-3 hours, and they came in and did it for three days. This really helped, although it did not completely take care of it. So for the past 12 hours I have been IVIG. Which is a continued treatment, through the neck catheter to help
knock out the rest of the antibodies, hopefully. It has made me feel terrible. The nurse just unhooked it for the night so maybe I can get some sleep now, until I have to wake up and take my 21 pills at 8:00 a.m., 3 pills at 2:00 p.m., 8 pills at 6:00 p.m. and 10 pills at 10:00 p.m. Since my throat and tongue has healed for the most part this has been much easier. I apparently bit my tongue with the breathing tube in and caused it to swell enormously to where I could barely swallow one pill at a time.
For the most part, I feel good. I am able to move fairly freely. I cannot use my arms to support myself in anyway, and I am still having trouble getting up and down out of normal height seating because of this. However, I have lost 27 lbs. and have pretty much adjusted to this new diet. My taste has been off because of the new meds, so it has made eating less much easier. However, the pharmacist informed me today that I have to stay very hydrated with one of the
immunosuppressants, and the steroids make you retain fluid - so I am a little worried about all of that. It is now 4:50 a.m. - wow.
12:07 p.m.
Last night was very rough; I didn't even dose off until around 6:oo a.m. The IVIG gives me flu-like symptoms and makes rest very difficult. The steroids also keep me wired. They went ahead and started the IVIG early today
and for only half the time, so hopefully I will get some rest. Dr. Mandras is planning on discharging me Monday to stay in the apartment around the corner for next month. Finn should be here Friday. I am so excited to put him in his Halloween costume and take some cute pics that I will definitely be posting for everyone. :) Even though I cannot pick him up or squeeze him too close, I just
cannot wait to put my hands on him!