Pump The Brakes!
I saw my new transplant doctor in Dallas last Thursday. Here’s a little snippet of the conversation:
Doctor: So, what can I do for you today?
Me: Hook me up with a liver transplant.
Doctor: OK, that’s our end goal here.
Me: Cool, so can we get this done like next month?
Doctor: Whoa! Pump the brakes there!
I’ll spare you the rest of the conversation. Basically, things are not going to progress as quickly as we hoped. The doctor wants to do more testing over the next three months to make sure I’m a viable candidate for transplant, whether it’s a living liver donation or a deceased donation. We also got not so encouraging news on the living liver donation that my sister volunteered for. She was with us at the appointment and the doctor expressed concern that he didn’t think she was close enough in body type to mine. He didn’t think her liver would be big enough to donate the amount I needed. This news crushed us, of course. With the living donor we thought we wouldn’t have to deal with waiting for a deceased donor. Now, that may be a real possibility. There is still testing that can be done on my sister to 100% rule her in or out as a donor, but they won’t do it until I have been determined to be a viable candidate.
The bottom line is, I will be spending the next three months going through more testing and monitoring. They will also be looking to see if any cancer develops outside my liver. As of my last scan there wasn’t any but because of the number games, they want to be sure it’s not going to happen. They don’t want to waste a liver on me if I am going to kick the bucket due to other cancer.
So, the LeeLander is grounded once again for the next three months. I’m not happy about this, but I have accepted that part. At the end of this three month period, as long as no other cancer has shown up, I will be listed as a viable candidate. At that time they will determine if my sister will be able to donate. If so, then we should be good to go for the transplant. If not, then I will go on the deceased donor list. The doctor said that even with my high priority, the wait could be 12-18 months.
He wants me to stay in the Dallas area until the transplant no matter how long it takes. Yeah, I’m not doing that. Three months without movement is going to be hard enough. I recently expressed my exact thoughts on this matter with a Facebook post.
14 thoughts on “Pump The Brakes!”
Thinking of you. My late husband dealt with the liver /pancreas cancer. He wasn’t given the option of surgery.
Good luck luv…..you are in my thoughts.
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Sorry to hear that you had to go through that. Thank you for keeping me in your thoughts.
This sucks raw eggs! As far as going back to your regularly scheduled life, is there a chance that you could endanger yourself (liver) by going back to hiking? Your poor sister – going through all that mental preparation to be told no because of body type? And what a drag for your morale. I’m so sorry that this is still hanging over you. What kind of testing will they be doing that they haven’t already done before? And the longer they put this off, isn’t there a possibility of cancer spreading due to the passing of time? Why can’t they put you on the list now? Praying that the doctor has a brainstorm very quickly.
The testing will be a lot of the same stuff I’ve already done. There is a chance of the cancer coming back the longer we wait but that’s the point of the delay. They don’t want to waste a liver on someone that might not survive because of cancer. It is a logical reason, but when you are the one that might die, logic is not much comfort.
So sorry to hear this. I was hoping it would be smooth sailing to your transplant…. but I will cross fingers and toes the testing goes well and your sister is a suitable donor.
Take care friend, and know we wish you well.
Thanks River! It was a bit of disappointment to have my Xmas present snatched away. Hopefully I’ll be getting it before next Xmas.
Dammit, Ari. I’m sorry the news wasn’t more encouraging. In your typical fashion, though, you are facing it head-on with an unwavering spirit. We only live once, and to the bitter end, we have to do precisely that…live. I have fingers and toes, and any other crossable bits crossed! Sending lots of love and strength to you and your family, my friend. xo
Thanks Tanya. I’m trying to stay positive. Believe it or not, I think I am more upset about staying still. The one thing I’ve learned being on the road is that movement is life.
Sorry for the bad news. I wouldn’t stay put past the three months either. I hope your sister does end up being viable.
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Thanks! That is our hope as well. She was not at all happy that she might not be able to help out.
Arionis recently posted…Pump The Brakes!
I love the energy behind your closing meme. Keep moving. You KNOW how much that means to you and your well-being. Plus, the dogs need movement, too! Follow their lead.
I’m so sorry you’re dealing with this setback, but I hope/trust that’s all it is, that with (short) time you’ll get the transplant you need.
Relentless positive, forward movement!
Thank you Rebecca! It’s nice to see that someone gets it. There are too many that don’t and can’t understand that I can’t stay still waiting to die. Of course I want things to work out with the transplant, but until that time comes, I’ll keep moving while I can.
I hate this and I’m keeping my fingers crossed. But I am glad your plan is to keep moving and to keep trying and hoping. Some people I know who’ve gotten cancer diagnoses simply gave up. Although we’ve never met in person (here’s hoping for that too, though) you’ve never struck me as the type to give up. In fact your adventures with the LeeLander have so often shown how you remain stubborn and even upbeat in the face of challenges.
Here’s to moving on.
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Thanks Chris. Movement is life. I actually got some good news a few days ago. Imaging on my liver showed that the radiation treatment killed the tumor. So as of now I am cancer free. Unfortunately, in liver cases it almost a guarantee it will come back in the future. They’ve put me on the fast track to get my transplant evaluation done so I can get listed. Once I do, that will open up more possibilities for what type of transplant we are going to go for. I’ll probably make a post about it soon but was tired of all the medical writing. Take care!