On January 14th We went for an appoint at the transplant clinic because Jared had been having pain and swelling. We met Dr. Charlton for the first time who is the new head of the liver team. It was a short visit and ended with us heading up to a hospital room for a 3 night stay. Jared ended up having another TIPS revision. Blood wasn't flowing very well which was causing him to swell up. They drained close to 30 liters of fluid off him in those three days. Crazy. He was feeling much better after the TIPS revision. His MELD is hovering at 20 so he still has a ways to go.
Thanks for all the prayers and support.
Monday, February 24, 2014
Thursday, February 20, 2014
A glimpse into my head.
As the months go on it gets harder and harder. I wish I could say I know how Jared feels but I don't. How could I? I am going through it differently than he is, as the caregiver. I do know I would be terrified and often feel like giving up. He is strong, much more so than me. I sit and watch him not be able to stay awake after he gets home from work, and see what his body is going through. The constant fatigue, swelling and pain, severe muscle cramping, the yellowing of his skin and eyes, encephalopathy, weight loss and muscle wasting... He doesn't have the energy or strength to do many of the things he enjoys doing. I wish there was something I could do to make his pain go away.
I apologize for my ramblings but I think it helps to share feelings and not just facts. One reason I wanted to write this is because I think people just don't understand. Now I'm not looking for pity or for anyone to feel sorry for me or Jared, and actually, If I get those things I would probably shut you out, so don't give it.
I have come to understand the very real outcomes that are possible. I am trying to accept what the future could hold for Jared, for me, and for the kids. This is difficult to write because I am not one to share or show my feelings, especially in person. So please don't come to me expecting a heart to heart, or for me to pour out my soul cause it won't happen. If you bring it up in person I will probably make light of it or change the subject. It's not personal its just how I am. Oh, and if you leave me a long sappy message in regards to this I will probably read it saying to myself, "blah, blah, blah" just so ya know. :)
I want people to realize the very real possibilities so they can maybe understand a little better of what we are going through. Waiting, wondering what the coming years are going to hold is hard. Three years ago I thought like I believe most people do. "A liver will come available that is a match relatively soon, Jared will get his transplant and everyone will live happily ever after." Ok not exactly, but pretty close. I guess what I just don't think people understand is that the worst possible outcome of liver failure is a very real possibility. I have met several people who have lost loved ones because their liver finally gave up and there was no donor available in time, and I'm not talking way back when, but just in the last few months. Fear, hope, desire, anxiety, are things I feel daily. If the gift of life does come we will be eternally grateful, Jared will have a second chance at life. But with it comes different fears, trials and hardships, lifelong ones. Ones that will be very hard for him. We hope and pray that his body will receive the new organ and accept it, and that his body will return to normal. He will have a lifetime of medications, a small price to pay for a new life.
All the uncertainty makes day to day life emotionally draining. I try to keep my mind busy by reading pointless material on the web, listening to music or shutting it off, creating distractions and doing/thinking about projects around my house. I am handling things the best I know how. I have stopped telling people we are doing good when they ask, cause things aren't good. We are ok and will go on no matter what happens. If you ask how I'm doing and I say ok then I mean just that. I don't like to get emotional, when I do, I try to think of something annoying to me, or stop whatever I'm doing and move onto something else...Huh I guess that could be why I have a hard time completing anything lol. Anyway, I'm done now so thanks for reading, and I hope you have a better understanding of what we are going through.
I apologize for my ramblings but I think it helps to share feelings and not just facts. One reason I wanted to write this is because I think people just don't understand. Now I'm not looking for pity or for anyone to feel sorry for me or Jared, and actually, If I get those things I would probably shut you out, so don't give it.
I have come to understand the very real outcomes that are possible. I am trying to accept what the future could hold for Jared, for me, and for the kids. This is difficult to write because I am not one to share or show my feelings, especially in person. So please don't come to me expecting a heart to heart, or for me to pour out my soul cause it won't happen. If you bring it up in person I will probably make light of it or change the subject. It's not personal its just how I am. Oh, and if you leave me a long sappy message in regards to this I will probably read it saying to myself, "blah, blah, blah" just so ya know. :)
I want people to realize the very real possibilities so they can maybe understand a little better of what we are going through. Waiting, wondering what the coming years are going to hold is hard. Three years ago I thought like I believe most people do. "A liver will come available that is a match relatively soon, Jared will get his transplant and everyone will live happily ever after." Ok not exactly, but pretty close. I guess what I just don't think people understand is that the worst possible outcome of liver failure is a very real possibility. I have met several people who have lost loved ones because their liver finally gave up and there was no donor available in time, and I'm not talking way back when, but just in the last few months. Fear, hope, desire, anxiety, are things I feel daily. If the gift of life does come we will be eternally grateful, Jared will have a second chance at life. But with it comes different fears, trials and hardships, lifelong ones. Ones that will be very hard for him. We hope and pray that his body will receive the new organ and accept it, and that his body will return to normal. He will have a lifetime of medications, a small price to pay for a new life.
All the uncertainty makes day to day life emotionally draining. I try to keep my mind busy by reading pointless material on the web, listening to music or shutting it off, creating distractions and doing/thinking about projects around my house. I am handling things the best I know how. I have stopped telling people we are doing good when they ask, cause things aren't good. We are ok and will go on no matter what happens. If you ask how I'm doing and I say ok then I mean just that. I don't like to get emotional, when I do, I try to think of something annoying to me, or stop whatever I'm doing and move onto something else...Huh I guess that could be why I have a hard time completing anything lol. Anyway, I'm done now so thanks for reading, and I hope you have a better understanding of what we are going through.
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