Monday, July 9, 2012

Ask and It Shall Be Given To You

I haven't written a new blog post in over a week and I didn't even participate in last Friday's Seven Quick Takes -- eek! I promise I have a good reason and I will talk about it now.

I wasn't sure I wanted to talk really publicly about this, which is why this is the first time I'm mentioning it, either on my blog or on Facebook in a specific way. I wasn't sure if I wanted to talk about it because it is kind of personal and also because if it didn't work, then I knew I'd be very depressed and upset and I didn't want lots of people asking me how it went if the results were bad. However, things have gone better than I ever could have hoped, so I decided to write this in the event it helps someone else...

For at least the past 20 years I have suffered from something called hyperhidrosis. In VERY simple terms, it means that I am an excessive sweater, however it really is so much more than that. My hyperhidrosis afflicts my hands, feet and my underarms. For my entire lifetime, hyperhidrosis has affected every aspect of my life every single day of my life. Not one hour has gone by that I was not acutely aware of my excessive sweating. The first time I remember being acutely aware of my excessive sweating was in 5th grade when I was 10 years old. I went to a Catholic school, and I remember one week I was entering the pew for mass with my class, desperately wishing I didn't have to sit with my classmates so that I didn't have to shake any of their hands during the sign of peace.

Sweating? You may ask. Well that's not such a big deal, right? Wrong. So, so, so, so wrong. Like many things, until you've experienced hyperhidrosis you don't know how horrible it makes your life. Imagine never wanting to go to a school dance because you didn't want to have to touch your date's hand for pictures or to dance. Imagine not being able to wear certain color shirts -- like light blue or grey -- because your massive sweat stains would show. Imagine writing on lined paper at school and the blue ink from the lines staining your hand. Imagine struggling to sew a pointe shoe because your hands couldn't grasp a needle, almost breaking your ankle because your sweaty foot slid out of your sandal or leaving a sweaty hand print on desks, tables, glass and floors. I know the countless times my hands have been so sweaty I lost the grasp of my steering wheel. I know how I've not been able to lift a kettlebell over my head for fear my sweaty grasp would drop it on my head. I know how many times I have been dehydrated and my hands have swollen because of excessive sweat. I know how many kids in baby ballet have said "Miss Anna your hands are wet!" and how many hot days I haven't been able to wear flip flops because my feet would slip out of them. Imagine your hands, feet and underarms being wet ALL THE TIME. I lived every day of my life in fear that someone would touch my hand. I work in development and public relations and the thought of having to shake someone's hand was TERRIFYING. Thank goodness I don't go on a lot of dates because the thought of my date wanting to hold my hand made me certain it was better just not to go. Not only was the thought of someone else grasping my hand or accidentally touching my foot horrifying, but the feeling of it on myself was awful as well. My sweat was always cold -- my hands, feet and underarms always felt cold and wet -- so moving my arms felt so disgusting. My underarms were always wet and cold. I could be sitting in a 65 degree room literally shivering with cold -- yet my hands and underarms would still be pouring sweat. Perhaps most sadly for my future, as much as I've always wanted a husband and a family, I thought that I honestly never wanted a wedding because I couldn't imagine spending a whole day in that sweaty dress, slipping out of my shoes with my hands pouring sweat and my fingers swelling. That is so sad.

I, and people like me I'm sure, came up with lots of tricks to try to disguise my hyperhidrosis. If I was at a cocktail party, I'd always be sure to hold my drink in my right hand so that when I went to shake someone's hand I could play off the sweat as condensation from the drink. I never wore light colored shirts so my armpit sweat wouldn't show. I wore socks as often as possible because the cotton helped wick the sweat. My family, God bless them, who knew my problem always  made sure to help in any way they could so I wouldn't have to touch a stranger's hand. These are just a few of the tricks I tried to disguise my sweating. The reality was, though, no matter what I did my hand, feet and underarms just kept sweating a cold, clammy, dripping sweat. I never felt comfortable in my own skin.  

One of the hardest things about hyperhidrosis is that it is not a well-known problem. The U.S. National Library of Medicine estimates that only 2-3% of the population suffers from the disorder. Hyperhydrosis can be secondary (caused by another disease such as cancer or hypothyroidism) or, as in my case, primary. The Library of Medicine also says, "In the majority of primary hyperhidrosis cases, no cause can be found. It seems to run in families." Clearly there is not a lot known about the cause of hyperhidrosis, and in my case, no one else in my family is afflicted. One of the hardest parts about it is the toll it takes on a person emotionally. There were times that I'd open up to someone I thought was a good friend about my problem, and often I was met with reactions such as "I sweat a lot too!" or "You might sweat in your hands a lot, but I sweat just as much in my back." To that I say: HAORFGAHOSJFHASOKJDFHASDOFHSOA;FHAWOIUGHWOIUAHGOAIUHGASOIUGHA. NO YOU DO NOT! Telling someone with severe hyperhidrosis that you "sweat too" is like telling someone with lung cancer that you cough a lot too. Normal people sweat when it gets warm, they get nervous, they exercise, etc. And, yes, I agree that some people sweat more than others. But sweating a lot and hyperhidrosis are not the same thing at all.

My mom and I first reported my problem to my pediatrician when I was younger; this is when I first learned of the word "hyperhidrosis" and that it was an actual problem that affected (albeit few) people other than me. For YEARS I tried all sorts of remedies -- I took oral medications whose side effects listed drying of the hands; I used washes and creams, even having my mom wrap my hands in saran wrap before I went to sleep at night to help the medicine work; I tried special deodorants. I did all of this with absolutely no help whatsoever. The most drastic thing I tried was in fall of 2010 when a local dermatologist administered Botox shots to my hands, feet and underarms in an attempt to paralyze my sweat glands. This is supposed to work for over 80 percent of people who suffer from hyperhidrosis. I don't know how else to describe the procedure other than to say it was barbaric. The dermatologist administered literally hundreds of shots in my hands, feet and underarms. Besides being incredibly painful and expensive, the treatment did not work whatsoever. It did not decrease my sweating even somewhat. Even if it had, Botox is not a "cure" and I would have had to go back every few months and re-endure the treatment to stay dry. After the Botox failed, I was at a really low point, thinking I would be suffering forever.

I talked to God for years asking him why I had to endure this. That it seemed like such a little thing in the grand scheme of His creation and why couldn't He take it away. I still don't know why I needed to suffer from this for so long, but I am here to tell you, after over 20 years of praying, God heard me.

For about 10 years I have known that there was a surgery out there that supposedly could cure hyperhidrosis. I did a lot of independent research about it on the internet. However, the surgery was not well-known nor was it performed by a great many people. There was a doctor in California who could do it and one in Florida I think. There was certainly no one who could do it that lived in my area, and there weren't even any doctors here who knew about the surgery who could even refer me to anyone. So after the Botox failed, I pretty much resigned myself to the embarrassment, discomfort and general pain hyperhydrosis would cause me for the rest of my life. I "offered it up" as my fellow Catholics would say, but I'm sure I was never too graceful about it. 

Until...

I was flipping pages in my local newspaper, the Herald-Dispatch, and came upon an advertisement from Cabell Huntington Hospital featuring a Dr. Jonathan Kiev. The large headline -- HYPERHIDROSIS -- definitely caught my attention. In the ad, Dr. Kiev described hyperhidrosis and a surgical procedure, an endoscopic thoracic sympathectomy, that could cure it. Could it be? Was this the surgery I had always hoped for being done by a surgeon in my area?!? I picked up my phone that day and made an appointment with Dr. Kiev, and it would turn out to be the best phone call I'd ever make.

On June 14 I went to see Dr. Kiev for a consultation. I described to him my hyperhidrosis, how long I had suffered, how it impacted my life and all the treatments I had tried. When I finished, Dr. Kiev described the surgery to me: he would make a small incision in my side, and go in and sever the sympathetic nerve and then do the same thing on my other side. He said that my hyperhidrosis is caused by an extremely over-active sympathetic nerve. In my case, my nerve is firing all the time, and this surgery would sever the nerve and break the chain telling my body to sweat. It would cure my hands, and significantly help my underarms and feet. Most importantly, Dr. Kiev told me that this surgery worked instantaneously; I would wake up with dry hands! Let me say that again -- I WOULD WAKE UP WITH DRY HANDS. Dr. Kiev told me that I was a perfect candidate and that I would be the first person in the area to receive this surgery. He moved to Huntington about 5-6 months ago and trained at the Mayo Clinic, where this surgery was pioneered. I scheduled a surgery date and went through my pre-operative screening. During the scheduling and screening, Dr. Kiev asked if I'd explain to the nurses what hyperhidrosis was, how it had affected my life and everything about my personal experience because no one had ever heard of it, let alone knew there was a surgery Dr. Kiev could do to cure it.


This is me pre-surgery. Erin described me as "peppy" but I think that is a kind way of saying "scared to death."
This past Thursday, July 5, I received my endoscopic thoracic sympathectomy. Without going into great detail about the procedure, I will say that the whole experience was relatively easy. My super sister Erin accompanied me to the procedure (lest you think my mom is not a caring person, she was actually across town at another hospital accompanying my dad to a surgery he was having, long story), and I cannot say enough good things about the staff I encountered at Cabell Huntington Hospital. Not only were they kind, they all seemed genuinely excited for me. Dr. Kiev came by and asked if I was ready, I said yes, and a short time later I was wheeled into the operating room. The next thing I remember, I was waking up in the recovery room, feeling my own hands and I said, "Did it work?" This super kind post-op nurse looked at me and smiled and said "It worked!" My doctor came by and informed me that they had put temperature clamps on my hands during surgery, and the minute my nerves were clipped they watched the temperature of my hands climb! I couldn't stop feeling my own hands -- they were dry and so, so warm. My sister came back to see me and she held my hand. I've never been happy to hold anyone's hand in my entire life, but I really didn't want Erin to let go that day.

This is me post-surgery. As I said, "This is a very happy Anna!" As Erin said, "...or just blind" as I didn't have my glasses on at the time and was just coming out of anesthesia. Touche.
I spent a few days resting and recovering. Although I always felt pretty good, my chest and back did have some pain due to the fact my lungs had to be deflated so Dr. Kiev could reach my nerves, and I think anesthesia can really make you feel run down. My sister brought me to my parents' house to recover, and each of my siblings took turns holding my hands. My sister Emma, who was born when I was 10 years old, said "Anna, I really expected your hand to feel like it's always felt my whole life, but your hand is so warm." Each of my brothers and sisters kept exclaiming how amazing it was to feel my hands be so warm and dry. When my mom got home she grabbed my hands and touched my feet and kept saying how she had never felt my hands or feet not be cold and wet. When my dad finally got home from the hospital (with his leg broken in two places and in a cast) the first thing he did was reach for my hand.

That first day, every hour was a miracle. I literally would think "my hands haven't sweat for one hour!" Then it became 12 hours, then 24, then 48. Fast forward to five days later and my hands, feet and underarms still have not sweat. NOT SWEAT ONCE. Never has one day of my life gone by where I haven't sweat profusely. My mom bought me my first bottle of hand cream. I'll be 28 on the 19th and I have never had or used hand cream once in my entire life. I love hand cream! In addition, I went to mass with my parents on Sunday and during the sign of peace, each shook my hand. Usually they hug me at that time because, well, they're my family, but each of them knew what a big deal it would be for me to voluntarily reach  my hand out and grasp theirs. 


This is something I've never had before. It's called HAND CREAM. Have you guys tried this? :)
I honestly can't express in words how grateful, ecstatic and relieved I am. My whole life has changed, and I am so grateful to Dr. Kiev. I am so grateful to my family, who spent years protecting me and supporting me and who have genuinely and whole-heartedly shared in my joy and excitement post-surgery. 

I don't know if anyone who will ever read this suffers from severe hyperhidrosis, but if you do, I just want to say that I UNDERSTAND. I'm not advocating everyone run out there for surgery, but if you have tried the creams, washes, deodorants, Botox and exhausted every option, I sincerely recommend you investigate the thoracic sympathectomy. Today. Right now. It will change your life. It has certainly changed mine. I honestly cannot say how much my life has improved in the past five days. It is a true miracle.

And speaking of miracles, if anyone reading this has prayed and prayed to God for something but you feel like He doesn't hear you, HE DOES. It took twenty years of praying, and I might never know why He waited that long to say yes, but He did. 


"For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord.

10 comments:

  1. Anna, I'm so happy for you!! Your post is so beautifully written...the first part made me tear up:-( However, the ending made me want to dance with you and HOLD YOUR HANDS!!! God Bless!
    Love, Mrs. M.

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  2. Whoo hoo! Go Anna! I love you and your amazing heart! <3

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  3. i love you, big sister. this was such a great experience and i'm so happy for you. <333

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  4. Loved every bit of this post! SO happy for you <3

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  5. Beautiful story from a beautiful heart. To God be the glory!

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  6. Anna,

    Thanks for sharing it always amazes me when people share personal stories and how brave they are when they disclose such a perdonal experience.

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  7. Anna,

    I teared up while reading your post. I'm 23 and I have had hyperhidrosis my whole life. And like you I have tried everything, even botox. Nothing has worked, I just thought, "This is just something I will have to work around my whole life." It's something that is on my mind constantly, trying to work around my sweaty palms, armpits, and feet. I have found myself in tears asking, "why me?" I have dreamed and dreamed of the wedding I would love to have, but knew it wouldn't be possible because of my condition. My parents called me one night and told me they saw a commercial and there's a doctor in Huntington that does the procedure --- we called the doctor and they advised that I should read your blog; I'm glad I did. We are in the process of setting things up and I'm hoping to get this surgery very soon! Have you had any side effects or anything like that? I'm so glad the surgery worked for you and thank you once again for sharing your story!

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    1. Hi Lyndsey,

      Thank you so much for reading my story and for writing me this note. I REALLY appreciate hearing from you. I can honestly say I know EXACTLY what you are going through. Hands, feet, underarms... the Botox, the creams, the deodorants... the crying, the suffering. The surgery was the best decision I ever made for myself, and I'm so glad I did it. I have had a side-effect, which is that my back and trunk have been sweating a lot more than they did before; however they sweat at what I call "appropriate times" -- when I'm nervous, working out, hot, etc. However, it is a LOT of sweat... I can soak a tee-shirt. I wouldn't trade it for the world though. Although the surgery only guarantees success for your hands, my hands, feet and underarms have all been cured, and I LOVE IT!!! I've never been so happy. My hands have not sweat not one time. Yay! I'd love to talk to you more and hear how your surgery goes. If you'd like to email me personally, my email is anna.lafferre@yahoo.com. I look forward to talking with you soon. :)

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  8. Nice
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