Noah & Dylan @ LPCH's Transplant Appreciation Picnic Over the course of the last few months we've had some sense of relief with Dylan's liver. No major hiccups since beginning of the year (which has been nice for a change). Early on we were advised that it can take a good year or two to get things to a point where life settles down a bit and its not so much of a race back and forth with complications after complications. Although I consider our journey less troublesome than others, we've for sure seen our fair share of hard moments over the last 2 years post-transplant.
As things have been what we consider "good", they've also been very challenging as well. As with so many complicated things like this, there is also some sense of a trade off. Over the course of the last 2 years, Dylan has had major and often times very scary allergic reactions. Pre-transplant Dylan was allergic to dairy and peanuts but post-transplant that list has grown and comes up out of nowhere at times.
Just a few months back we were at Lake Tahoe enjoying Dylan's 2 year Transplant Anniversary and yet again he had another anaphylactic allergy attack...this was especially bad and we probably needed to go the hospital but Amber was able to catch it in time and Dylan was able to get it all out of his system prior to needing to inject him with our EpiPen (although in hindsight we should of). When you go into anaphylaxis your blood pressure drops among throat closing/swelling and a whole slew of other issues. The blood pressure drop is especially troublesome in Dylan's scenario b/c he has a really small Hepatic Artery, which if it clots off or collapses would require another liver transplant. Its such a fine balance this life, from timing of medications, to nutrition, to allergy interference, and still trying to just be a normal kid growing up. Dylan has of course become very scared of trying anything new and eating out at places is very difficult for him, as for him even though we have told him to trust us and we've read all the ingredients sometimes its just not good enough and an attack happens. Imagine being 7 years old and going through what he has and overcome and then fear what you eat. One of the biggest culprits of the allergies changing and having no rhyme or reason to their behavior is due to his anti-rejection medication (Prograf) that he takes. Dylan forever needs to be on anti-rejection meds (hopefully someday this will change but for now and the foreseeable future, this is how it is). The med is a double edge sword, he needs it to keep his liver happy but at the same time this toxic med is responsible for uncontrollable allergies and high instances of cancer among transplant patients.
Dylan has consistently had chronically high Eosinophils in his liver, which are immune white blood cells, these are speculated to be what is causing his constant inflammation in his liver and hyper sensitivity. At last clinic visit with Stanford, they advised about us switching his anti-rejection med to another one called Rapamune and that it should be discussed and considered due to his allergy issues. We have looked up all the pros and cons and at this point see it as his only options available given medical science today. Its a scary time to do this and embrace it, as its a super fine balance to regulate. Dylan will need to be tapered down from his Prograf, while adding in the Rapamune and start a therapeutic dose of Prednisone (I hate this stuff too, its evil) but this is done an an attempt to keep his liver happy during this transitional period. The process will take many weeks/month(s) to be completely done with. Although it has lots of upsides, the risks of downsides is overbearing at times to think about. I feel like we just got his liver to a point where its semi happy (but in looking back its only been about 3-4 months, but as parents who have been in/out of hospitals, tests, and procedures for 7+ years, this break although semi short has been nice....a nice change to say the least).
The risk of this new med carries a lot of the same negative issues as its literally a derivative of Prograf but just has less clinical side effects (or so they've determined at this point in time). It still has risk, it still has the potential of bad things, but the risks outweigh our options at this point, lesser side effects is better than the alternate; its crummy to think that way but its the only thing one can do. We have to give it a shot and hopefully by the powers that be, its better than Prograf. Trying everything in our power to give our little man the best life given his circumstances in his life. I know we are in for hard times over the course of the next few weeks (labs every other day, clinic visits, etc...) and at the end of this time I hope what Dylan is subjected to this go around is for the betterment of his future.
As always thank you for constantly thinking about our family and keeping Dylan in your hearts.
-Noah
As things have been what we consider "good", they've also been very challenging as well. As with so many complicated things like this, there is also some sense of a trade off. Over the course of the last 2 years, Dylan has had major and often times very scary allergic reactions. Pre-transplant Dylan was allergic to dairy and peanuts but post-transplant that list has grown and comes up out of nowhere at times.
Just a few months back we were at Lake Tahoe enjoying Dylan's 2 year Transplant Anniversary and yet again he had another anaphylactic allergy attack...this was especially bad and we probably needed to go the hospital but Amber was able to catch it in time and Dylan was able to get it all out of his system prior to needing to inject him with our EpiPen (although in hindsight we should of). When you go into anaphylaxis your blood pressure drops among throat closing/swelling and a whole slew of other issues. The blood pressure drop is especially troublesome in Dylan's scenario b/c he has a really small Hepatic Artery, which if it clots off or collapses would require another liver transplant. Its such a fine balance this life, from timing of medications, to nutrition, to allergy interference, and still trying to just be a normal kid growing up. Dylan has of course become very scared of trying anything new and eating out at places is very difficult for him, as for him even though we have told him to trust us and we've read all the ingredients sometimes its just not good enough and an attack happens. Imagine being 7 years old and going through what he has and overcome and then fear what you eat. One of the biggest culprits of the allergies changing and having no rhyme or reason to their behavior is due to his anti-rejection medication (Prograf) that he takes. Dylan forever needs to be on anti-rejection meds (hopefully someday this will change but for now and the foreseeable future, this is how it is). The med is a double edge sword, he needs it to keep his liver happy but at the same time this toxic med is responsible for uncontrollable allergies and high instances of cancer among transplant patients.
Dylan has consistently had chronically high Eosinophils in his liver, which are immune white blood cells, these are speculated to be what is causing his constant inflammation in his liver and hyper sensitivity. At last clinic visit with Stanford, they advised about us switching his anti-rejection med to another one called Rapamune and that it should be discussed and considered due to his allergy issues. We have looked up all the pros and cons and at this point see it as his only options available given medical science today. Its a scary time to do this and embrace it, as its a super fine balance to regulate. Dylan will need to be tapered down from his Prograf, while adding in the Rapamune and start a therapeutic dose of Prednisone (I hate this stuff too, its evil) but this is done an an attempt to keep his liver happy during this transitional period. The process will take many weeks/month(s) to be completely done with. Although it has lots of upsides, the risks of downsides is overbearing at times to think about. I feel like we just got his liver to a point where its semi happy (but in looking back its only been about 3-4 months, but as parents who have been in/out of hospitals, tests, and procedures for 7+ years, this break although semi short has been nice....a nice change to say the least).
The risk of this new med carries a lot of the same negative issues as its literally a derivative of Prograf but just has less clinical side effects (or so they've determined at this point in time). It still has risk, it still has the potential of bad things, but the risks outweigh our options at this point, lesser side effects is better than the alternate; its crummy to think that way but its the only thing one can do. We have to give it a shot and hopefully by the powers that be, its better than Prograf. Trying everything in our power to give our little man the best life given his circumstances in his life. I know we are in for hard times over the course of the next few weeks (labs every other day, clinic visits, etc...) and at the end of this time I hope what Dylan is subjected to this go around is for the betterment of his future.
As always thank you for constantly thinking about our family and keeping Dylan in your hearts.
-Noah
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