I have had quite a few people indicate that they thought transplant is a cure. I would like to spend some time to let you all know what day to day life is like for us right now.
I would like to start out by saying that a transplant is not a cure its just a really good life saving band-aid but it is not a cure. It is also not permanent when Charlie got one of Jeff's kidneys we were told that Jeff and Charlie were such a good match that if we do a good job taking care of Charlie's kidney it could last 35 years. That is a really long time for a transplanted organ to last and we think that it is god watching over Charlie that we were given those odds. With that being said there are many things that could put Charlie's kidney into rejection. His medications are balanced carefully to make sure he has the right therapeutic dose of meds. Currently that is monitored through monthly lab draws that means he gets poked in the arm and they take a few vials of blood. Since he has gone down to once a month lab draws he gets upset when we talk about labs. He is a brave little boy and does an amazing job getting poked but that doesn't mean he doesn't fight back a little. They would like urine samples but Charlie isn't potty trained so that means either bagging him till he pees (Not fun for him at all) or he has to have a catheter put in to collect urine (even more not fun). This is the first time since Charlie first got sick that he has had labs this far apart. he is also down to seeing his amazing Dr. every few months. also very strange for us as we were seeing her every month for about 2 years now.
Charlie currently has to have meds 5 times a day. His one anti rejection medication has to be taken every 8 hours with in 10 min of the time he needs to have the dose, he has that med at 6 am, 2 pm, and 10 pm. Then his next med he also needs 3 times a day, 8 am, 2 pm, and 8 pm at the 8 am time we have a few meds that he takes. All the meds are liquid and taken orally, then he needs to drink at least 40 ounces of fluid a day to keep his kidney happy and healthy (that can be a challenge some days with a little kid). He does a great taking the meds but when we add a new one he gets really upset. We also have a blood pressure machine at home so we can take Charlies blood pressure a few times a week.
The meds that help his body to not reject his kidney also cause his body's immune system to be weakened. So if charlie gets sick it is much harder for him to fight it off. It also means that there is a possibility his body could decide during whatever sickness to recognize his kidney as an object that doesn't belong and cause him to go into rejection. If Charlie has a fever over 101.2 that is automatic labs. If he has the fever with other symptoms that could mean a trip downtown to the hospital for and Emergency Department visit and possibly a hospital stay. All of this will always be a part of our lives. Charlie will never have a life free of meds, labs, potential hospital stays fear of going into rejection (although right now he doesn't really understand that he could ever go into rejection) this is his normal, our normal.
For over a year now charlie has had and been fighting Epsom Barr Virus ( EBV) it is a form of mono. To be able to fight it he is on a lower dose of anti rejection meds to give his body a little extra fighting power. With that comes a few different risks. On one hand the lower anti rejection meds could cause his kidney to go into rejection. It also makes it so he can fight off smaller illnesses. On the other hand prolonged elevated numbers of EBV can cause Lymphoma in transplant patients. At Charlie's last appointment with his nephrologist (kidney dr) I had Jeff ask if we could have Charlie go back on to the normal dose of medications. To that Charlie's Dr said she would rather risk Charlie going into rejection then him getting cancer. All of this is hard on Jeff and I.
One of our fears that we may not talk about often is that Willa or the new baby will get the same kidney disease that Charlie had/has Diffuse Masangial Sclerosis ( Natalie is to old to get it). It is a very rare disease that shows up before you are 3 years old. It is also said to be genetic. So we watch Willa a lot and ask each other do her eyes look swollen? How about her feet? Could they be a little bit swollen?
Needless to say Kidney disease is still very real in our house and if we know you are sick we will probably avoid you and if we are sick we will probably stay home a lot more often as to not spread germs. Charlie has had his vaccines up till his 2 year shots and now for the rest of his life he can never get a live vaccine. He depends on the herd to keep him healthy. We are aware that we can't protect him from everything (even though we may want to) but when we can we do what we can to keep him healthy.
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