Journal entry by Laura Benson — Jun 9, 2018
Colin has had a rough week. Last weekend NIH gave Colin water pills to remove fluid around his heart. He lost a lot of water and became severely dehydrated. This took his very high blood pressure and brought it far too low. Since he already has kidney injury from last year at the onset of his condition, this only made matters worse. So the team of doctors spent the entire week getting his kidneys functioning and his blood pressure balanced with IV Fluids and medications (although blood pressure is slightly stable, it is still high). Only then were they willing to finally let him take his experimental medication: Tofacitinib.
He took his first dose of Tofacitinib on Thursday. He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly. (Cyclosporine is known for causing high blood pressure and kidney problems. Colin has been on it for over 12 months).
He is now taking Tofacitinib twice a day.
Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.
Colin has a reactivation of HHV6, which is something we all had when we were babies. There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS). Colin has been tested for HHV6 many times this last year. Occasionally it shows up in blood tests, but has not been consistent. So, the NIH doctors would like to treat it while he is being closely monitored. He continues to donate his blood for testing that is used in this type of research.
All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning. And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening. As you can imagine, he is getting weak and tired from fighting whatever "this" is. And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated.
Thank you all for your prayers because we know God is listening.
He took his first dose of Tofacitinib on Thursday. He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly. (Cyclosporine is known for causing high blood pressure and kidney problems. Colin has been on it for over 12 months).
He is now taking Tofacitinib twice a day.
Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.
Colin has a reactivation of HHV6, which is something we all had when we were babies. There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS). Colin has been tested for HHV6 many times this last year. Occasionally it shows up in blood tests, but has not been consistent. So, the NIH doctors would like to treat it while he is being closely monitored. He continues to donate his blood for testing that is used in this type of research.
All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning. And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening. As you can imagine, he is getting weak and tired from fighting whatever "this" is. And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated.
Thank you all for your prayers because we know God is listening.
We have had the best doctors examine and treat Colin. Walter Reed, John's Hopkins Center, Washington Hospital Center, Mayo Clinic and NIH and many others have been consulted from various other hospitals. They genuinely care and are working hard at learning more about Colin's condition and why his own immune system won't kick in and fight for him.
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