I wanted to first and foremost point out that April is National Donate Life Month, If you aren't a donor please take the time to educate yourself on the pros/cons of being one (click image for link).
I don't even know where to start about the last weeks events. What an emotional last few weeks it has been.
Since I last updated the journal I personally have had a Upper Endoscopy last Thursday and and CT Scan was just a few days ago (Monday). The endoscopy contradicted the Barium Swallow from week prior, which is exactly why they requested to put a visual on my internals of my stomach. The Endoscopy showed that I have ZERO Gastritis and no visible acid issues. I will say the Nexium I've been on has been working great for the acid issue from before. The endoscopy did show that my stomach was very small and had large nodular folds in it, which were biopsied as a precaution, and my stomach was somewhat "J" shaped. The doctors discussed and compared the tests that had been done and they all agreed I needed a CT Scan. The Endoscopy was an interesting experience, I literally don't recall a good portion of my day.
I arrived on Monday to clinic and the two surgeons advised me that they felt my stomach "probably" had adhered to my liver by the sounds of things and tests they've conducted to date. I was advised that to correct this issue I would need surgery again (a bit less intrusive but surgery none the less) and surgery could be as soon as next week. I was a bit bummed out to think I might have to do this all over again but at the same time also relieved to know they had a fix. To try and live this way forever would be a nightmare to be honest. I feel I'm fully prepared for whatever happens as a result of all of this but if they had the means to fix it I would be the first in line to sign up...this is all very uncomfortable to say the least. After clinic I was happy to hear they could get me into CT a few hours later. I made my way over to CT and was advised I needed to drink 16 fl. oz. of contrast on top of the IV contrast I would be getting as well. I chugged it down and was extremely uncomfortable but wanted to make sure they got what they needed. CT was done and over with and I figured I would hear from them sooner or later.
I didn't hear anything on Tuesday from my doc but I did hear from the chief of Transplant, he had called me to thank us for a little something we had done and to advise me he was aware of my situation and agreed I most likely had this side effect going on and I would hear from my surgeon ASAP (which he was unable to call b/c the team was in surgery with a transplant). I knew I wouldn't hear any definitive word that day b/c the focus is on the transplant patient and I know exactly how that goes.
The following day (Wednesday/Yesterday) I decided to call the surgeons office to hear if they had time to read my scan and to see what the plan was. As of this moment I had now gone 48hrs being told more-or-less I would need surgery as early as next week. I left a message for my surgeon and was called back by one of the assistants and advised my scan didn't show any adhesion and that my stomach was fine, that I should just keep taking my current Nexium and be sure to take the Gaviscon for the reflux, and to not stress as this can cause my issues as well. I was completely shocked and caught off guard...but that really doesn't even say it well enough, I felt blind sided and offended. Just 48hrs before I had 2 surgeons prepping me for surgery and even showed me scans of my problem area and how they would go fix it but now I'm being told over the phone that I have nothing wrong and to basically chew tums and fart (this is how I felt, not what was physically said to me). I had to step back for a second and ask if she was sure she was reading the right chart, person, scan, etc...as this was nothing that was said before. I got some push back from the assistant as I was re-advised that this was the doctors words and that she was just relaying to me. I said there is something physically wrong with my stomach, I can only fit approx 8oz every 6-8hrs and that the night before I actually threw up all my food. She again advised me that there is physically nothing wrong with my stomach, that none of my scans suggest any of that and that was that. I pressed on a bit more out of frustration and she let me know she would make an appointment with the surgeon for him to tell me the same stuff in person. I was setup for the following day (Today) to meet with my surgeon and hear it from the horses mouth so to speak.
I arrived at clinic and was nicely greeted by my surgeon and the assistant whom called me the day before. He quickly showed me my CT Scan and how it showed no adhesion, which I replied with "that is great as I really don't care to have surgery again and glad I don't have to". The surgeon told me that "he couldn't rule out that I don't need surgery, as my stomach is showing signs of issues and not working properly. That he can see there is a motility issue for sure". I was completely shocked to now hear this again, just 24hrs prior a spokesperson for him advised me that I didn't need surgery as "everything is fine". The surgeon advised me that he wishes to not dive into surgery just yet but rather try another medication for 2 weeks and see if it helps with getting my stomach working again. That I could have nerve damage which in time "should" go back to normal, that I might be having effects from anesthesia, or that I might by chance have a small adhesion somewhere that isn't being picked up on the CT Scan. He said if the meds don't work within 2 weeks he would more likely than not need to do surgery to take a look inside and see if they can get my stomach straightened out or just see if anything is in wrong placement or anything else that might/could of happened. He also advised me that I need to keep my Nuclear Gastric Emptying test for next week as this would help him more in his diagnosis. I really appreciated my surgeon's candor and him being straight forward, I really wish his assistant wouldn't have done what she did and would of just explained things a bit more like it truly is. So that's been my last week, the emotional roller coaster keeps on going and hopefully we get a step closer to a "fix" for my stomach, I'm optimistic the new med will work. Enough about me though, onto Dylan.
Today we got Dylan's labs and unfortunately his liver enzymes are up, platelets and white blood cells are down, and this has been going this way for 2 weeks in a row now. The other not so great thing is these liver enzymes have doubled in 2 weeks, we were hoping to see his labs better today and were hoping his higher labs last week were just a lab error but our luck was no such thing. Today they also tested Dylan for Ebstein-Barr Virus (EBV) and he tested positive; this is a virus that 90%+ of adults will have in there life time and most kids by age of 5 have been exposed to it. In healthy people, its no big deal (most end up with mild cold like symptoms and the more severe get Mono), in transplant patients its a very bad thing and one that needs to be closely monitored as it can cause Post-transplant lymphoproliferative disorder (PTLD), this can lead to certain cancers and must be monitored very diligently to ensure it does not progress to that. The hard thing about being a transplant patient and having EBV or CMV is that while on immunosuppression your body can't fight the virus properly. There is this fine balance of lowering the rejection meds in order to give your body the chance to fight it off and get it to go dormant, often times this can result in having to completely remove the meds that prevent the liver from rejection. We knew this is something that would most likely happen in time but defiantly never even contemplated it less than 2 months post transplant. Dylan's virus level is at just about 3,000 copies. The transplant team will act on Monday with Dylan's new labs (if they are still elevated) and if it continues to trend upwards the team acts aggressively at 6,000-10,000 copies. For now we await to hear what Monday brings.
Today is such a hard day, this week is such a hard week, we feel so blessed to have Dylan doing so well but also kicked down by our various setbacks that can't be undone and the new challenges that lay ahead. I can't help but be jaded by this roller coaster ride our life is on and have the overwhelming feeling that its never going to end. Each day brings new hope but also new upsets...its a constant 2 steps forward and 1 back, then 1 step forward and 2 back. Life can be so unfair at times. ALL I WANT IS A BETTER LIFE FOR DYLAN, why...why does he have to endure so much and never catch a break. Just for once I wish for him to have a break and enjoy being a kid, a healthy kid.
-Noah
I don't even know where to start about the last weeks events. What an emotional last few weeks it has been.
Since I last updated the journal I personally have had a Upper Endoscopy last Thursday and and CT Scan was just a few days ago (Monday). The endoscopy contradicted the Barium Swallow from week prior, which is exactly why they requested to put a visual on my internals of my stomach. The Endoscopy showed that I have ZERO Gastritis and no visible acid issues. I will say the Nexium I've been on has been working great for the acid issue from before. The endoscopy did show that my stomach was very small and had large nodular folds in it, which were biopsied as a precaution, and my stomach was somewhat "J" shaped. The doctors discussed and compared the tests that had been done and they all agreed I needed a CT Scan. The Endoscopy was an interesting experience, I literally don't recall a good portion of my day.
I arrived on Monday to clinic and the two surgeons advised me that they felt my stomach "probably" had adhered to my liver by the sounds of things and tests they've conducted to date. I was advised that to correct this issue I would need surgery again (a bit less intrusive but surgery none the less) and surgery could be as soon as next week. I was a bit bummed out to think I might have to do this all over again but at the same time also relieved to know they had a fix. To try and live this way forever would be a nightmare to be honest. I feel I'm fully prepared for whatever happens as a result of all of this but if they had the means to fix it I would be the first in line to sign up...this is all very uncomfortable to say the least. After clinic I was happy to hear they could get me into CT a few hours later. I made my way over to CT and was advised I needed to drink 16 fl. oz. of contrast on top of the IV contrast I would be getting as well. I chugged it down and was extremely uncomfortable but wanted to make sure they got what they needed. CT was done and over with and I figured I would hear from them sooner or later.
I didn't hear anything on Tuesday from my doc but I did hear from the chief of Transplant, he had called me to thank us for a little something we had done and to advise me he was aware of my situation and agreed I most likely had this side effect going on and I would hear from my surgeon ASAP (which he was unable to call b/c the team was in surgery with a transplant). I knew I wouldn't hear any definitive word that day b/c the focus is on the transplant patient and I know exactly how that goes.
The following day (Wednesday/Yesterday) I decided to call the surgeons office to hear if they had time to read my scan and to see what the plan was. As of this moment I had now gone 48hrs being told more-or-less I would need surgery as early as next week. I left a message for my surgeon and was called back by one of the assistants and advised my scan didn't show any adhesion and that my stomach was fine, that I should just keep taking my current Nexium and be sure to take the Gaviscon for the reflux, and to not stress as this can cause my issues as well. I was completely shocked and caught off guard...but that really doesn't even say it well enough, I felt blind sided and offended. Just 48hrs before I had 2 surgeons prepping me for surgery and even showed me scans of my problem area and how they would go fix it but now I'm being told over the phone that I have nothing wrong and to basically chew tums and fart (this is how I felt, not what was physically said to me). I had to step back for a second and ask if she was sure she was reading the right chart, person, scan, etc...as this was nothing that was said before. I got some push back from the assistant as I was re-advised that this was the doctors words and that she was just relaying to me. I said there is something physically wrong with my stomach, I can only fit approx 8oz every 6-8hrs and that the night before I actually threw up all my food. She again advised me that there is physically nothing wrong with my stomach, that none of my scans suggest any of that and that was that. I pressed on a bit more out of frustration and she let me know she would make an appointment with the surgeon for him to tell me the same stuff in person. I was setup for the following day (Today) to meet with my surgeon and hear it from the horses mouth so to speak.
I arrived at clinic and was nicely greeted by my surgeon and the assistant whom called me the day before. He quickly showed me my CT Scan and how it showed no adhesion, which I replied with "that is great as I really don't care to have surgery again and glad I don't have to". The surgeon told me that "he couldn't rule out that I don't need surgery, as my stomach is showing signs of issues and not working properly. That he can see there is a motility issue for sure". I was completely shocked to now hear this again, just 24hrs prior a spokesperson for him advised me that I didn't need surgery as "everything is fine". The surgeon advised me that he wishes to not dive into surgery just yet but rather try another medication for 2 weeks and see if it helps with getting my stomach working again. That I could have nerve damage which in time "should" go back to normal, that I might be having effects from anesthesia, or that I might by chance have a small adhesion somewhere that isn't being picked up on the CT Scan. He said if the meds don't work within 2 weeks he would more likely than not need to do surgery to take a look inside and see if they can get my stomach straightened out or just see if anything is in wrong placement or anything else that might/could of happened. He also advised me that I need to keep my Nuclear Gastric Emptying test for next week as this would help him more in his diagnosis. I really appreciated my surgeon's candor and him being straight forward, I really wish his assistant wouldn't have done what she did and would of just explained things a bit more like it truly is. So that's been my last week, the emotional roller coaster keeps on going and hopefully we get a step closer to a "fix" for my stomach, I'm optimistic the new med will work. Enough about me though, onto Dylan.
Today we got Dylan's labs and unfortunately his liver enzymes are up, platelets and white blood cells are down, and this has been going this way for 2 weeks in a row now. The other not so great thing is these liver enzymes have doubled in 2 weeks, we were hoping to see his labs better today and were hoping his higher labs last week were just a lab error but our luck was no such thing. Today they also tested Dylan for Ebstein-Barr Virus (EBV) and he tested positive; this is a virus that 90%+ of adults will have in there life time and most kids by age of 5 have been exposed to it. In healthy people, its no big deal (most end up with mild cold like symptoms and the more severe get Mono), in transplant patients its a very bad thing and one that needs to be closely monitored as it can cause Post-transplant lymphoproliferative disorder (PTLD), this can lead to certain cancers and must be monitored very diligently to ensure it does not progress to that. The hard thing about being a transplant patient and having EBV or CMV is that while on immunosuppression your body can't fight the virus properly. There is this fine balance of lowering the rejection meds in order to give your body the chance to fight it off and get it to go dormant, often times this can result in having to completely remove the meds that prevent the liver from rejection. We knew this is something that would most likely happen in time but defiantly never even contemplated it less than 2 months post transplant. Dylan's virus level is at just about 3,000 copies. The transplant team will act on Monday with Dylan's new labs (if they are still elevated) and if it continues to trend upwards the team acts aggressively at 6,000-10,000 copies. For now we await to hear what Monday brings.
Today is such a hard day, this week is such a hard week, we feel so blessed to have Dylan doing so well but also kicked down by our various setbacks that can't be undone and the new challenges that lay ahead. I can't help but be jaded by this roller coaster ride our life is on and have the overwhelming feeling that its never going to end. Each day brings new hope but also new upsets...its a constant 2 steps forward and 1 back, then 1 step forward and 2 back. Life can be so unfair at times. ALL I WANT IS A BETTER LIFE FOR DYLAN, why...why does he have to endure so much and never catch a break. Just for once I wish for him to have a break and enjoy being a kid, a healthy kid.
-Noah
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