Life post transplant has truly been an amazing experience. I often look back at life pre-transplant and the time right after, and it seems as if it could've been someone else's life...and I was a mere observer. Then, reality brings me back to the present. Although life is SO much better than life before "the call", I would not say that our life is "normal" (although...truly "normal" is JUST a setting on the dryer). It is "normal" for us, and I would not trade it for the world. We were told before transplant that getting a transplant was like trading one disease for another. Although we got rid of the liver disease, we now have a child that is immunosuppressed and always will be. So, today I thought I would post the "top" 9 things that we have worried about since transplant. Granted, they are much less terrifying than life pre-transplant, but none the less they are worries for us as parents:
1) Immunsuppression - Emma takes a medication two times every day that suppresses her immune system so it does not recognize the "foreign body" that is her liver and attack it. Because of this we have to be more cautious that she is not around those who are sick.
2) Allergies - Since Emma was transplanted at such a young age and then put on the medication called Prograf (immunosuppresant) it has thrown off her allergy system. She has literally tested positive for allergies to every food that we have ever tested. Our allergist (who we love) has eliminated the major allergens (eggs, nuts, and shellfish) from her diet, however she has spells where she will get hives for days for unknown reasons or have vomitting spells. It boggles my mind sometimes! We are anxious to have her allergies tested again this summer because I think some have become more extreme.
3) Aspiration - Now, whether this is transplant related or not, it is something that we definitely worry about! Emma had always done fine with drinking....until one year post transplant. Her first year post transplant she did fantastic. Then, one year out she began having sinus infection after sinus infection...which turned into lung infections that led to hospitalizations. She would literally be on antibiotics for 10 days...be off for 2 and end up in the hospital again. This went on for a year. Finally, we went to Denver for her annual check up. I mentioned it to her doctors, and they were ready to just tell me it was OK. I was adament that something was not right. So, they did a swallow study, and sure enough Emma was aspirating on thin liquids. Since then we have had to thicken all of her drinks. It is a pain, but not all that difficult. We hope that one day she will be able to come off of the thickener.
4) Weakened bones - Emma has been on steroids for so long that it is questionable how strong her bones are. We have "only" had one broken bone so far (knocking HARD on wood right now).
5) Poop color - sorry TMI, however any "liver parent" knows that the poop tells you A LOT about how the liver is functioning. So, anytime that Emma has lighter colored poop....It FREAKS.ME.OUT!!! However, too much milk or too many bananas can also cause lighter poop (there's some food for thought:).
6) Blood draws - Even though we are down to getting blood drawn every 3 months....and they alway look excellent, I still get that high anxiety feeling until I get the results back from the blood draws. There is ALWAYS the chance of rejection. The further out we get the more confident I feel....but I don't think it will ever be a laid back event to get her blood drawn.
7) Teeth - Being extremely jaundice when the teeth are forming leads to....you guessed it....yellow teeth!!! Also, being on so many different medications and vomitting so much have not helped. Therefore we see a pediatric dentist. We will be seeing a new one this summer in Denver. I am frightened of that day.
8) Mom's sanity - LOL....I always wonder about that one:)
9) The thought that we are never promised another day with her. I know that sounds odd, and I know even with a totally healthy "typical" kid you never know what will happen tomorrow. However, when your child has been through so much, that fear just looms in the dark shadows all of the time. I wish that it would go away. Or do I? Would I value every single second as much as I do now?
For now I just take it one day at a time, and I cherish every single moment. Life post transplant is not simple....it is not easy....BUT, it truly is WONDERFUL AND AMAZING! I would not trade one single day of the life that we have had with Emma, and we look forward to many many more anniversaries to celebrate in the future!