Colin's Condition - NIH Discharge

NIH discharge

Journal entry by Laura Benson — Jul 9, 2018

Colin was discharged from NIH tonight 

NIH admitted Colin for a specific autoimmune protocol.
He was monitored closely from May 29 through tonight (July 9) inpatient and finally discharged back to Walter Reed. He will continue to return to NIH as an outpatient three days/week.  Thankfully NIH is directly across the street from Walter Reed.  
Although he is considered an outpatient, we will be spending many days at NIH -  transporting him back and forth from the Navy base to the NIH campus.

We spent the entire first half of this year looking for other solutions or answers to "What is wrong with Colin?"  We even took him twice to Mayo Clinic in Rochester, MN for several weeks at a time.
Sadly, there were no answers, no prognosis and not even a diagnosis.  The only conclusion is that the medicine he is currently on is causing too many dangerous side effects, and unfortunately they aren't helping control his condition any longer. 
He has been constantly waxing and waning - but never healed or even managed.  He has had several relapses and hospitals stays.  And, every day is pain and discomfort for him. 

 

  
The NIH doctors had planned to taper the immunesuppressive drugs that he has been on for the past 1 1/2 years and replace them with a new experimental drug.  
The drug itself is not experimental, but using it for this purpose is experimental.  
To be clear - this drug is prescribed and used on other types of conditions, but not on someone with DRESS syndrome, Drug Hypersensitivity or the type of immune condition that has manifested in Colin. 

 

The goal during his stay at NIH was to get him off some of the meds through a slow taper.

NIH added a new drug: Tofacitinib to target his jak/stat pathway. 
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.  

So basically, add the new drugs and taper off the others.
So far - some of the taper was successful, while others were not.     

Today we were told by one of his doctors that this new drug may not cure him, but we were reminded and do understand that he is helping to further science and research and any others that may suffer similar conditions.  

Colin's Condition - Independence Day 2018

Independence Day (4th of July 2018)

Journal entry by Laura Benson — Jul 4, 2018

This year has flown by.  We have spent so much time living in and out of hotels, hospitals and traveling from Bethesda, MD to Rochester, MN to Orlando, FL.

Colin has currently been inpatient at NIH since May 29, 2018.  He agreed to try a new medication that could potentially help with his JAK/STAT pathway.  Additionally, his condition continues to wax and wane and with that he also has also reactivated the HHV6 Virus.  So, the doctors at NIH are trying to control his inflammatory response and his virus with two additional drugs:  Tofacitinib and Ganciclovir

The goal is to add the Tofacitinib and taper off the other immune suppressing medications that he has been on (prednisone, cyclosporine and cell cept).  Long term use of these medications have been causing secondary problems for Colin (dangerously high blood pressure, Cushing Syndrome, glaucoma, acute kidney injury and many others).  The less medication he is on, the better!  Side effects are nasty and they do cause a lot of damage.  

The taper began, first with cyclosporine.  Doctors make adjustments week by week, so we have to be very patient.  Colin has to have his blood drawn and body examined daily.  We have been trying other new things as well, such as milk baths.  (He uses the hospital walk-in tub/bath and I pour an entire gallon of milk into the bath water with a solution of bleach).  
He was finally completely off cyclosporine on Sunday, but then the doctors didn't like the lab results and were not comfortable seeing his rash breaking through, so he was placed back on cyclosporine. 

So the new plan would be to try to taper his steroids.  
This can be tricky, because his body needs to wake up adrenal glands. In the beginning, Colin was on 125 mg of prednisone!!!  He was on 100 mg then 80 mg and stayed around 60 mg for several months.  It has taken well over a year +++ to get his taper down to 40 mg.  He keeps going up and down, from 80 to 100 then back to 80 and then slower on the way down. And even slower as they get lower.  It's a roller coaster for his body and his health.  He has been down on 40 mg for months now.  The doctors have attempted to go lower, but it wasn't successful. Meaning, his body can't make up the difference.  Trying to taper Colin off steroids always causes another hospitalization - because his own immune system can't wake up.  When this happens, doctors add more steroids back on and go back up, which makes the steroid taper process take even longer.

Honestly, we were told back in Spring of 2017 when this all began that a drug reaction would last 2- 8 weeks and that he would be off steroids in about six months - so much for that!!

He has been struggling with the steroid taper the entire time.  And his condition has caused multiple hospitalizations and the loss of so much skin.  So much damage to his body.  It's unimaginable.  And unceasing.  He is so very strong and patient, but it takes a lot out of him to be in constant pain and misery EVERY single day - without a break.  I have not seen Colin have one single "good day" since this all began. We do the best we can to make life worth living and enjoyable as possible - like trips to see the dogs and family in Florida.  But it's not the same when he is sick, handicapped (wheelchair bound) and has to conserve all of his energy.  It's heart breaking to watch someone you love go through this and realize there is nothing that I can do to help him.

Hopefully with the addition of Tofacitinib he can successful taper down to a lower (less damaging) maintenance dose of steroids.  And then doctors can decide which immune suppressing medicines to taper next, if possible.  

To add insult to injury, Colin's 23 year dedicated and highly successful career in the United States Navy is sadly coming to an end for him. (Too soon and NOT the way he wanted to retire; not his choice and not fair to him.)  
The Navy began his retirement process last month.  We were told to move our Florida home into storage and tie up any loose ends, so that we can focus on his Medical Review Board/Retirement while living in the Wounded Warrior Barracks (building 62 as we call it).  

Thank God that NIH has allowed Colin to remain in their hospital for over a month for supervision.  (He was admitted on May 29)  It's comforting to know that doctors have been carefully looking his body over -literally inside and out, every single day for over a month straight.

We can also thank God that He placed us in Washington DC in 2016, when Colin was given orders to DLI (Language School).  Thank God this serious illness and unknown medical condition did not happen while we were living in Northern Germany. 

We pray every day for Colin's health and strength to keep fighting through this and we thank God for putting him so close to Walter Reed National National Military Medical Center and National Institutes of Health, which are literally across the street from each other. 

We are celebrating the 4th of July in the hospital at NIH.  

Thinking of all of you and hoping you have a safe holiday.