Monday, October 22, 2007

Here's the "short" version of my story:

TENS is a severe adverse reaction to medication (a more severe version of Steven Johnson Syndrome - SJS), which causes the epidermis to blister, die and come off over 30% of the body, internally and externally. In my case it was over 80%.

I live in Decatur, GA where I was misdiagnosed twice by one hospital and then correctly diagnosed at another hospital and then sent for treatment at a third hospital where I stayed for over a month in the trauma burn unit. I wish to be on your program because I appreciated to way you have handled peoples stories in the past and because I am alive because that little voice in my head simply would not stop telling me that something was REALLY wrong.

Here's the long version of the story - please excuse any repeat of information - this is the same version of the story that I have shard with people in my online support group. I apologize for the length.

I am a 30 year old caucasian female and the short version of my story is that I developed TENS over 80% of my body and spent over a month in the trauma burn unit at Grady Memorial Hospital as a result of taking Piroxicam (Feldene).
Here's the long story - I am going to try to be as specific as I can, so that people may contrast and compare thoroughly. I feel that this is the best way for us to better understand the what and why of SJS/TENS. If I seem to state the obvious for some things, please keep in mind that not all cases are the same and some other people may need explanation. Also, please excuse any misspellings.

As of June this year (2007) I was in fairly good health prior to this incident, with the exception of having severe pollen allergies with asthma and mildly bad joints. I am also moderately allergic to many fresh fruits and vegetables and tree nuts. Latex has also caused minor irritation to my skin (i.e. I cannot use traditional condoms). Last, I had a reaction to the antibiotic Augmentin a couple years ago in the form of a rash on my stomach and legs as well as feeling hot - not like a fever but internally hot - a feeling I am sure most of you are familiar with. Looking back and knowing what I know now, it is my personal belief that I experienced Erythema multiforme from the Augmentin. At the time I was treated with a shot of steroids and discontinued the medication and the symptoms went away.

Then, on June 2nd of this year (2007), I noticed that what I thought was a vaginal yeast infection was not improving but getting worse, even though I had used a over-the-counter yeast infection treatment that I had used with success in the past. In addition, my eyes were irritated and had some mucus in them (not from an outside source - I was not using any kind of eyedrops and I did not have contacts or glasses).

I was concerned that instead of a yeast infection I might have a urinary tract or bladder infection, so I decided to go to the hospital emergency room (because it was a Saturday). After waiting many hours I finally was seen by a doctor. By this time my external vaginal area was inflamed and somewhat painful to the touch. My eyes also continued to be affected with mucus. In addition, I could feel that my mouth was beginning to get sores - I could feel my gums swell in places and I had that distinct metallic taste of blood.

It was faint and the doctor claimed she couldn't see anything when I asked her to look in my mouth. I was struck by and mentioned the oddity that all of my mucus membrane areas were reacting at the same time. The doctor brushed it off as mere coincidence, saying that I just had a bad yeast infection and just needed regular eyedrops for my eyes, completely disregarding my mouth. I left the hospital, got my yeast infection prescription filled and went home. I applied the medication as prescribed but over an hour later I still was continuing to feel worse and not better.

I called the hospital and somehow managed to speak to the doctor I had seen. I asked her if I should have at least some relief from the vaginal cream and she said yes. I told her my situation and she advised me to come back to the hospital. It was around 11:00 p.m. at this time, but I went anyway because of my increasingly inflamed and painful state. I was taken to a room fairly quickly, but once I was there I had to wait a long time again.

By now I was unable to sit because of the pain. My eyes were worse and my mouth felt very raw. My fiance noticed small red pimple-like spots on my back. A different doctor saw me and told him about my previous visit. He did pay closer attention to my eyes - he put some sort of florescent dye in them and looked closely with a blacklight flashlight. This was his diagnosis: a really bad yeast infection and a viral infection in my right eye.

The connection of all mucus membrane areas and the red spots were brushed off as nothing and I was told that these are not issues that are important enough to come to the emergency room for and I should not come back. By now it was around 2 a.m. and I went to the pharmacy to get my prescription eye drops. I went home, took the medication and went to bed.

I woke earlier than usual the next day (June 3rd) in a state of anxiety - I KNEW something was not right. Over the course of a couple hours, the red spots spread, my lips began to swell, my skin looked grey and I felt hot. (As with the Augmentin reaction - this heat is different from a regular fever. I felt hot in my body, like my insides were boiling) I decided to go back to the emergency room - a different one this time.

When we pulled up to the ER my breathing was becoming labored and I was processed fairly quickly. At this time I asked my fiance to document how I looked with his camera. (He continued to take pictures throughout the whole experience. I am debating whether or not to post them) The first photo shows me with red spots all over my body, red inflamed eyes and huge, swollen lips.

The ER staff quickly realized that I was having some sort of reaction and, because they are a teaching University hospital, called in a group of various specialists to look at me. At first it was a toss up between adult chicken pox (shingles) and SJS. They put me in a private room, put me on IVIG and took a skin biopsy. I was kept there overnight for observation. The diagnosis of SJS from the NSAID Piroxicam came in the morning after I was moved to their ICU because my breathing had become difficult again.

By now the red spots were getting bigger in size and it was clear that this was not going to pass quickly or easily because I had been on the Piroxicam at the strongest dose for over a month and this particular medication has one of the longest half-lives of any medication on the market. In other words, it builds up in your system and it takes a very long time for it get back out. I was put in an ambulance and taken to Grady's trauma burn unit in Atlanta, Georgia. I stayed there until July 6th.

Over the course of my stay the SJS became TENS when over 80% of my top layer of skin (the epidermis) blistered, died and came off. I was treated the same as someone who had 2nd degree chemical burns - only mine came from the inside out. My internal organs also sloughed, causing my throat to get filled up with dead tissue. I was given a catheter - a very painful event because by then my vagina was so severely inflamed that even regular urination felt like razor blades (please know I am not exaggerating). I was given Hydrotherapy every day - an intensive bath in which dead skin is actively removed. After a week I was put into a medically-induced coma with the drugs Versed and Phentonyl, given a tracheotomy and put on a ventilator.

I stayed like that for over 3 weeks, including 10 days when my lower layer of skin (the dermis) was almost completely exposed and my epidermis (top layer of skin) was failing to grow back. With each day that passed my chances of survival decreased greatly. Amazingly, my skin finally began to grow back and my recovery thereafter was actually fairly and comparatively fast. Over time I began to breathe on my own and learned to walk again. On the second to last day the feeding tube that had stretched all the way from my nose down to my lower intestine and the life-saving yet annoying tracheotomy in my neck were finally removed.

Since coming home this has been my life:
-Moisturizing my dry, scarred skin, including the patches on my left arm where I had a secondary infection and on my neck from the tracheotomy
-Dealing with my severe dry eye by using preservative-free eye drops, Restasis eye drops and nightly ointment (I don't believe the Restasis is working)
-Not being able to drive, work or do any other eye-focus oriented activity
-Going to physical therapy twice a week for strengthening, stretching and conditioning
-Trying to find a general physician who will be my doctor. I was turned away by 7 so far
-Going to appointments to see Dermatologists, Opthamologists, Rhuematologists, Gastroenterologists. etc.
-Having to stay out of the sun
-Struggling with chronic fatigue
-My pre-existing allergies and joints continue to be problematic and now I am advised not to use any medication unless I absolutely must, so treatment is tricky at best
-Last but not least, I had to postpone my wedding. It's hard to be bride when your fingernails are falling off, you have a bald spot right on top of your head and your skin is unpleasant to look at. I would say the emotional toll is nearly as great as the physical.

Thank you for taking the time to read my story. I hope the information herein is helpful to others. Feel free to contact me if you have any questions.

Thursday, October 11, 2007

Not preachy but promising (I think)

First, I have to warn you this is a very long post! But it is full of great news!

I will start with telling you my latest medical news: Last week I had a blood test done for a condition called "Sjogren's Syndrome" because I am showing all of the symptoms of dry skin, eyes, mouth and fatigue (you can learn more at I was actually disappointed to learn that the test came back negative. It may not make sense, but considering that I have the symptoms anyway, it would have been comforting to be diagnosed because then there is one less unknown. Of course I may just have to accept that this is just how my body is now and it may never have a "name" and that is okay.

Yesterday I had my long-awaited allergy test without any complications. The test was done not so much to find out if I have allergies, we knew that already, but to find out specifically what I am allergic to. With this information a special serum will be made up into "allergy shots" made just for me which we hope will greatly improve my quality of life. You may not have known that I was already home-bound this spring because my pollen allergies were so bad.

Then today I went to my also long-awaited eye doctor follow-up appointment. I was not surprised when the Opthamologist told me that the Restasis medicated eye drops were not working and that is okay with me anyway because they burned when I put them in my eyes. I was pleased when she immediately suggested trying a new treatment with these "scleral lenses" because after much research of my own, these seem like the best option. And it was good to find out that they can fit me for theses lenses there at Emory University, instead of having to fly several times to Boston like I originally thought. I believe this is great news because I have heard other SJS survivors claim that they get "their life back" and their eyes are no longer in pain after getting the scleral lenses. God-willing the lenses will do the same for me! I am grateful because I am going for my first lens fitting tomorrow morning.

In addition, she (Dr. Song) was very pleasant and more understanding of my situation than most doctors I have encountered, which was relieving and comforting because it helped me feel more at ease and confirmed that I am not crazy. It is sad that many doctors brush me off or disregard my concerns, for what reason I do not know, but it
makes me feel ashamed or like I am blowing things out of proportion when in my heart I know I am not. She is leaving Emory to go bless Veterans at a hospital in Asheville, NC next month, but she has referred me to an opthamologist somewhere else who she holds in high regard, so I am hopeful about that.

Last, the doctor told me that she would normally suggest plugging up my lower tear ducts to help my situation. The lower ducts are actually where your tears drain and plugging them up helps keep the few tears that do come from the upper ducts to stick around longer. BUT the prayers are working and my lower tear ducts were scarring up and therefore plugging up themselves! Isn't it weird and wonderful how something that otherwise would be a bad thing can become something so good? So instead of having to go through surgery and putting some foreign object in my eyes, it is God's hand that is helping my own body "heal"!

Now on to a response to an email I received from a woman who sent out a mass email prayer request that reached people ALL OVER THE WORLD. Yesterday I received a forwarded response from a woman in Africa who has AIDS and leads a women's AIDS support group. Here is a snippet from her email:
We continue to pray for her total recovery and we trust that her tear ducts start functioning well again.Yesterdy it was our independence day and my prayer group and I went to our Diocesan prayer mountain.They fasted for Katie's total recovery I can not personally fast because am diabetic but I also forego something to plead for Katie's condition.

When I first read Beth's email my brain and heart became twisted up into a knot of almost sheer lack of understanding. It was and is still nearly incomprehensible to me that these women, who are complete strangers and face dire straits of their own, took the time and energy to go to a mountain and fast with me in their hearts and prayers. It is simply ASTOUNDING to me.

It made me feel so moved and so small at the same time. This, in combination with recently listening to "Mere Christianity" on audiobook led me to write the following diary entry today. I want to share this with you as a matter of testimony to God's power and to offer a reciprocal embrace in His Love.

...I am still facing some difficult and lasting after-effects of SJS/TEN. All-together the situation has been traumatic and life-changing. But I cannot just think of the bad things like scars and fatigue because there are positive facts and that is what I am working to focus on in life:

1) I did not die - I am alive! Other than the obvious reason for my personal gratitude, I am thankful for the sake of my loved ones. I shudder to think of what kind of grief Jon would have gone through, especially considering the previous loss of his Mother. And my family also would have had to deal with losing me at a young age in such a drastic and truly gruesome way. During the worst of it my physical
deterioration would have certainly prevented an open-casket funeral.

2) Jon and I have a closer and deeper bond. Like many people who endure hardship together, our love and commitment reaches to a greater extent than before. To experience such devotion expressed towards YOU is something that moves and changes you in a way that can hardly be explained with words. My level of respect for Jon, which I am sad and ashamed to admit was poor before, has risen greatly and will not be called into question again if I can help it.

3) GOD. Before this happened to me the phrase, "God is good" was just a saying to me. Now I KNOW it is TRUE. God IS good in the truest, deepest and most amazing sense. My self-inflicted disconnect with God before SJS/TEN has lost it's strength. I used to be dismayed that my occasional moments "with" God didn't last. But now I am mindful that I MUST turn to God again and again with each new breath.

I was blessed by prayer from people all over the world. I am humbled, strengthened and positively challenged by this. I was doubtful of the power of my little prayers, but now I see that doubt was less in me and more in God and that was wrong. God does not need perfect prayers to do His perfect work. In fact, I am not sure he needs my prayers at all to signal to Him that someone is in need of His care. He is All-Knowing already without my help! But instead of discouraging me, this fact ENCOURAGES me to pray as a matter of showing my faith in His work and a willingness to accept His will.

My personal truth is that if it had been His will for me die, I think I would have actually been quite pleased. I like to think that though my faith-growth at that point (and still) was meager, I would have been accepted into His arms in heaven. And while causing grief to those still on earth, I would personally have been very happy. It is HEAVEN, after all!

But I am not really surprised or disappointed that I was not gathered up by angels to go on to my "immortal life." I am confident that there is still much for me to do on earth and I feel that my continued life (or lack of death) confirms this. And while I am frustrated with my momentary human confinement and physical limitations, I try to not be bitter. The frightening and mutually comforting thing is that this not my path to Him but His path for me.

I feel, and hope that it is true, that I am surrendering more and more of my "self" to Him and as a result I expect to exponentially improve my life and who I am. I use the word "expect" not like a parent expects a child to obey, but rather in the hopeful sense, like hoping the cake tastes as good as it looks. And anyway my expectation comes not for myself but from a desire to please God. So, really, it comes from God for God. Just like the electrical cord conducts the power from the wall socket to the light the lamp, I just have to open myself up to become a good conductor of His energy/love/goodness/will.

I imagine all of this will take a lifetime of practice, but then that's the point I suppose. And that is GREAT, as far as I'm concerned.

I pray to my/our Dear and All-powerful God with love, respect and with
a goal of surrendering my "Self" to Your will. I am grateful for the
life and guidance You have given to me by way of wonderful, loving and
strong people around me, as well as the love and strength I have
within me. Please accept my efforts to learn that while I may not have
the power to carry on, You DO. I ask for and am grateful for Your
never-ending Love, Forgiveness and Grace in my life as well the life
of each and every person on earth. I am in awe and wish to become
nothing but a reflection of You. In Jesus' name I pray - Amen

With that I hope this post finds you well.
In loving faith,