Colin's Condition - 2nd Visit to NIH and another relapse

2nd Visit to NIH and another relapse

Journal entry by Laura Benson — Jan 18, 2018

Colin has been getting progressively worse (again).Not only is his skin inflamed (again), but he feels terribly crummy, he is out of breath, very lethargic and extremely weak.

At his last NIH visit for Human Trials (case study) the doctor noted a flair up during the exam portion of Colin’s visit. The primary goal of that appointment was to collect blood and skin for testing and research purposes.  Colin has volunteered to donate blood and skin to science at the NIH to help find a cure for DRESS syndrome. 
Thankfully, we are blessed with an accomplished doctor who has the most experience and continues to study and researches DRESS syndrome patients, specifically in Asian communities. Colin went "home " (back to the Wounded Warrior Barracks at NSA Bethesda) to rest and recover (from the extensive daisy chain biopsy sites as well as the process of transporting him from the Navy Base to the NIH Campus). 

He was at the NIH on Tuesday, and every day thereafter he has gotten worse. Not only has his skin begun to erupt and manifest several different dermatological presentations, but he continues to feel more and more lousy.

I started to panic, as I sent texts and called doctors, from a feeling of Déjà vu, as I have “been there before” and felt (from experiencing this with my husband, many times now) that we may have to take him to the Emergency Room. There is only so much that I can do for him in our room/unit.  Some relapses we struggle to care for him in our unit, while others are so severe that he needs IV and medical attention 24 hours a day.

We ended up speaking with doctors and medial professionals (Walter Reed’s Dermatologists, Internists, Nephrologists and his case manager, and I even reached out to the NIH, since they were the last to see him in clinic) to problem solve and contemplate what the source of this new relapse was. Especially since a new medication was introduced last Friday (due to extremely high blood pressure).

Ultimately, he needed to be seen right away.  So, we went to several clinics at Walter Reed early this morning to get some eyes on him and determine what would be best and safest for him.

 We are attempting to avoid a hospital admission today, but there is no guarantee that won’t be coming.  The doctor noted that he is relapsing and it is coming on strong, so we have to keep a careful watch over him.

There is a fine line in determining what is truly best for him, given his unique condition.  Admit him to give him IV fluids, medications and medical personnel yet how do we prevent Colin from possibly contracting a Staph infection or c.diff. or worse.  According to the medical professionals, we have to avoid a hospitalization if at all possible.  Each time he is admitted he picks up something from the germs in the hospital and has no way for his body to fight. (due to his suppressed immune system)

The decision to send him back to the Wounded Warrior Barracks was made to keep him away from other sick people who he would be exposed to if admitted. (We were told that this hospital has seen many admissions; mostly with RSV and the flu.  Colin's immune system could not handle that right now).
Instead, he will be under my care and observation and confined. 
Thankfully we can walk to the hospital from the barracks and the base has transport, if needed.

They ordered several blood labs and bed rest and now he is back in his room, resting. 

In lieu of hospitalization, they determined that they have to increase his steroids today to help him fight off this recent flair up. (He was hoping to continue to step down, and get away from steroids and the side effects that come along, i.e. diabetes, mania, weight gain, brittle bone, stomach ulcers, liver and kidney disease, Cushing's Syndrome, just to name a few.
He also was given a steroid shot under the skin, I'm sure that was terribly uncomfortable and painful.

The doctors have also added new medications to the list of drugs he already takes.  Unfortunately, each time we attempt to taper him off his meds he relapses and the doctors end up having to bring the dose back up again and sometimes add others.

Additionally, they are transitioning him to a brand new immunosuppressant drug and planning to wean him off the one he has been taking since May. The current drug has lost its effectiveness and also has dangerous side effects when used long term such as pancreatitis and high blood pressure.

For the next week he will be taking both immunosuppressant drugs together, (along with the steroids and all others that he takes for all of the side effects that he is experiencing). They will taper one off as they increase the other. They need time to evaluate how he reacts to the new one without withdrawing completely from his original medication. But, this is a fragile process. It seems each time they add a new medicine, he has a reaction.  

Because, Colin's condition keeps him in a state of constant hypersensitivity 

Just another day in the life of his chronic DRESS syndrome condition. 

The NIH is testing him many things, among the tests ordered is one for something called Cytokines, to get information on how his body reacts and responds to inflammation. He is very much a science experiment and involved in these extensive human trials on chronic DRESS syndrome.

It’s terrible they don’t yet have a cure!

Hopefully the study that Colin is contributing to (on his own free will) can help find a cure for any others that have to go through something as horrible as this.