I am currently in Indiana visiting Dad again and am happy to report that he's feeling better. Well, relatively speaking anyway. Dad is still not up for leaving the room due to his many physical symptoms despite my annoying pleadings to get him out for a short bit, but since he's been comfortable enough during this visit to at least sit with me upright in the living room for several hours the last few days, I will take what I can get.
We visited Dad's physician (his GI or gastroenterologist) on Friday practically as soon as I stepped off the plane from New Jersey. His GI was kind enough to make an exception to see us on a Friday: he usually only sees pre-transplant patients on Wednesdays and post-transplant patients on Fridays. Thankfully, there was some flexibility somewhere in this crazy mess (or mishegoss) called waiting for a liver transplant.
I asked his GI about 20 questions, almost all of them had the answers either I had already heard or had already assumed would be given. We were also told by his GI: "I spoke to [the head of liver transplant surgery] this week about your case and you're near the top of the list!"
Well, to be honest, we heard that before and that really means nothing to me anymore. I guess they're trying to keep my father's hopes up, but I really think it's not right to set false expectations. Nothing I can do about that, though. I'm certainly not going to start screaming at my Dad's only connection to the liver transplant list like I sometimes day dream about: "Stop with this BS and just get my Dad a LIVER!" Only in the movies would something like that ever work.
As other conversations I've had with his physician since Dad has been in Indiana (those were on the phone), he was extremely excited that Dad's viral count has been below detection. He started opening presentations that he's preparing for various conferences to show us exciting new data he's collected in Hep C therapy. He confirmed that--as of now--Dad would be transplanted with a liver that is Hepatitis C-free and Dad would be expected to remain Hep C-free after the transplant. This is fantastic news if it's true as it means that his prognosis would be so much better. He also wouldn't even need to continue with these awful anti viral medications after the transplant in that scenario. Fingers crossed that 'my mazel' really has new meaning soon! Let's not get ahead of ourselves, yet, though--this is really just a hope at this point.
The other topic which is terrible to hear in person, is that Dad will need to be poisoned to get his MELD score up in order to really be at the top of the list. Mixed messages and backwards medicine indeed, although I can't really fault his physician. We all have to work within the confines of the national transplant system--completely 'fair' as it's designed, right? I'll explain the poison plan in another post, but absolutely ridiculous to think that we will have to start literally poisoning my father in order to get him a life-saving liver. What kind of logic is that? Really--have you ever heard of anything like that? And, this is actually one of the best options we have. Mind boggling. As if he didn't have enough to deal with already.
Changing topics--in the middle of the data sharing session with Dad's physician, I learned about the true utility of Google Scholar. Look-out, blog readers--you're in for a treat from here on out! Just kidding--I won't put you all through even more dense posts. I have, however, spent a good chunk of this afternoon having a medical journal battle with Dad. Who says you can't have fun while sitting in a hotel room depressed about Dad's current medical state?
Of course, most of what I have read today is pretty depressing. It has reinforced what I've already thought (and blogged about to some degree) that Dad's condition is not accurately reflected in his MELD score and he really needs a liver transplant soon. His prognosis from certain liver disease-related symptoms may not be good even once he receives a new liver, especially fully recovering from HE which is one of my worst fears (after the fear of him not making it to or through the liver transplant itself). It is so sad to think that not only did I not learn much from my visit with Dad's physician on Friday, but the more I read in the medical literature or read into what the doctors are really telling us (or not), the more scared I am for Dad's near-term and long-term health. At least I learned of a faster way to get more concerned this weekend.
My mazel.
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I asked his GI about 20 questions, almost all of them had the answers either I had already heard or had already assumed would be given. We were also told by his GI: "I spoke to [the head of liver transplant surgery] this week about your case and you're near the top of the list!"
Well, to be honest, we heard that before and that really means nothing to me anymore. I guess they're trying to keep my father's hopes up, but I really think it's not right to set false expectations. Nothing I can do about that, though. I'm certainly not going to start screaming at my Dad's only connection to the liver transplant list like I sometimes day dream about: "Stop with this BS and just get my Dad a LIVER!" Only in the movies would something like that ever work.
 |
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As other conversations I've had with his physician since Dad has been in Indiana (those were on the phone), he was extremely excited that Dad's viral count has been below detection. He started opening presentations that he's preparing for various conferences to show us exciting new data he's collected in Hep C therapy. He confirmed that--as of now--Dad would be transplanted with a liver that is Hepatitis C-free and Dad would be expected to remain Hep C-free after the transplant. This is fantastic news if it's true as it means that his prognosis would be so much better. He also wouldn't even need to continue with these awful anti viral medications after the transplant in that scenario. Fingers crossed that 'my mazel' really has new meaning soon! Let's not get ahead of ourselves, yet, though--this is really just a hope at this point.
The other topic which is terrible to hear in person, is that Dad will need to be poisoned to get his MELD score up in order to really be at the top of the list. Mixed messages and backwards medicine indeed, although I can't really fault his physician. We all have to work within the confines of the national transplant system--completely 'fair' as it's designed, right? I'll explain the poison plan in another post, but absolutely ridiculous to think that we will have to start literally poisoning my father in order to get him a life-saving liver. What kind of logic is that? Really--have you ever heard of anything like that? And, this is actually one of the best options we have. Mind boggling. As if he didn't have enough to deal with already.
Changing topics--in the middle of the data sharing session with Dad's physician, I learned about the true utility of Google Scholar. Look-out, blog readers--you're in for a treat from here on out! Just kidding--I won't put you all through even more dense posts. I have, however, spent a good chunk of this afternoon having a medical journal battle with Dad. Who says you can't have fun while sitting in a hotel room depressed about Dad's current medical state?
Of course, most of what I have read today is pretty depressing. It has reinforced what I've already thought (and blogged about to some degree) that Dad's condition is not accurately reflected in his MELD score and he really needs a liver transplant soon. His prognosis from certain liver disease-related symptoms may not be good even once he receives a new liver, especially fully recovering from HE which is one of my worst fears (after the fear of him not making it to or through the liver transplant itself). It is so sad to think that not only did I not learn much from my visit with Dad's physician on Friday, but the more I read in the medical literature or read into what the doctors are really telling us (or not), the more scared I am for Dad's near-term and long-term health. At least I learned of a faster way to get more concerned this weekend.
My mazel.
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