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Wednesday, August 31, 2011

#89 - WARNING-GRAPHIC PHOTOS (Not for the faint of heart) Erasing Life Not Wise

WARNING: THIS POST GRAPHICALLY DOCUMENTS A FEW OF MY SURGICAL BATTLES - BUT I AM STEPPING OUT ON A LIMB BECAUSE I WANT OTHER ADDISON/ADRENAL INSUFFICIENCY PATIENTS TO KNOW THAT YOU DO HAVE A CHANCE TO SURVIVE MAJOR SURGERY WITH THIS CONDITION, IF IT IS HANDLED AGGRESSIVELY AND YOU HAVE EDUCATED ADVOCATES ON GUARD, READY TO SPEAK UP, LOUDLY, IF NECESSARY, ON YOUR BEHALF.

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I've learned over the past decade that my health problems are not something that I can just erase. I've tried, believe me. First, I would delete or destroy any pictures of me that looked terrible if they highlighted me looking unwell. My family thoughtfully and delicately took lots of pictures of me during the various serious surgeries I've had and I'd just DELETE any pictures that I found personally disturbing. Soon, I realized that I was deleting everything because I hated the reminder of what I went through.

Over the years, this has left me with very few photos of the challenges I've endured; I now wish that I had not been so eager to hit the button to erase those captured moments. I now wish I had not torn up photos and discarded negatives of moments that were too painful to see again. However, I now realize that I should have honored this part of my life instead of trying to pretend it didn't happen. After learning that patients who have gone through serious illness, injuries and surgeries can suffer post-traumatic stress episodes, I FINALLY better understood the "why" behind my attempts to rid myself of evidence of my battles.

And, there is no escaping the scars on my body. My body has taken a beating. It's been close to hell and back, but I'm still here. During one hospital stay, I had a doctor come to my hospital room with my huge chart in hand and he was flipping through it as he walked in. I was sitting up, in my short set outfit, reading a book. As usual, even in the hospital, I did my hair and put on a bit of makeup. He glanced up at me, back down at the chart and said, "Excuse Me," and he walked back out. A moment later, he came back and basically told me that he couldn't believe that I could possibly be the patient who had gone through all those serious surgeries because I looked completely opposite of what he expected.

He confided that he had to walk back out of my hospital room to confirm that the chart matched the patient, me. He was in disbelief and he said that I shattered any mental images he'd readied himself to see as he entered my room. For the first time in his career, I made him question his pre-conceived, chart-induced notions. Since he was making late night rounds and had been on duty for over twelve hours, he was exhausted. I told him to take a load off and he settled in on the sofa while saying, "I've got my pager on; they'll catch me if needed," and he even laid his head back and caught a catnap. He'd been brutally honest with me and I appreciated it, so we had instant respect for one another and he got to relax while I continued to read my book.

I'm paraphrasing, but his parting words had a continued impact on my life. Before he left my room, he said, "Don't ever let anyone say you are weak because most people would not be able to endure or even survive all of the surgeries you have, especially with your adrenal condition. Obviously, you are extremely strong and mentally warrior-minded...your appearance does NOT mirror what your chart says you've been through."
A few months after my spine reconstruction, getting to finally wear the SOFT brace! Ya!
I'm with my dad as he gets ready to leave for the Houston Livestock Show & Rodeo.
So, I realized that I should not have tried to work so hard to erase the images of my journey. I could not Find Lana if I kept running away from her.
Even if I did not look my best and even if these photos make me cringe, I should've respected my own journey and not shied away from facing the truth in photographic form. If someone doesn't like seeing my journey, they have been warned and can go visit someplace that has flower, beaches and creme puffs. For me, that's not always been my direction.

My Stefie is staying with me until they roll me away for the spine surgery.
 I realized, over time, that my photos definitely are NOT pretty, but they prove that an Addison's patient can survive major surgery --- or in my case --- multiple surgeries that are life-threatening to an otherwise "healthy" patient that doesn't have adrenal issues.

My husband, Deputy Dave, kissing me before I am taken away
in the hopes that my collapsed neck can be stabilized. The spinal
cord has an area where only a pin-hole size
of spinal fluid can pass through.

I've had two cardio-thoracic surgeries. The first in 2005, the second in 2006. Each one left me gasping for air for almost nine months from a collapsed lung and other horrible side effects. But, I didn't have a choice...the surgery decompressed main arteries to my upper body. This condition had put me in grave danger of the compressed arteries creating blocked blood flow which would create blood clots and that means a possible pulmonary embolism among other lovely dangers.

These surgeries were horrendous. Each surgery meant that my first rib had to be cut out, the muscles in my neck had to be cut out and I have clips running along the arteries because there was uncontrollable bleeding that required clipping. Still, after the first surgery I had major internal bleeding. Not fun.

Weeks after my surgery, I saw the pictures that my family had taken of me lying in bed at the hospital with the huge bloody bandage going across my neck/thoracic area along with the bulbs for draining excess blood from inside my body. Not a glamour shot.

I've been looking for these photos. We'll see if I can find them and post at a later date.

Then, I had cervical spine reconstruction...fusion, plating, bolts with screws, rebuilding with cadaver bone. So awesome! Really, it is. I was very close to being either dead or completely paralyzed. My legs were already dragging and the feeling in my extremities was no longer without constant numbness and tingling. After the surgery and long recovery, I got back more use in my legs and hands than they ever thought possible.


My cervical spine reconstruction --- very challenging time in my life, but
I made the commitment to do my best to recover and do as many
"normal" things as I could.
 Again, this neck collapse is mostly due to the steroid treatment I must take to control my Addison's disease, but the steroids have taken a huge toll on my bones, especially my spine.

Dr. Ghosh removing his perfectly placed stables
It's difficult to see all of the bolts in this x-ray, but I believe there are
twelve of them. Or, maybe double --- maybe twelve on front
and twelve in back...I can't remember. This surgery required a halo to be
attached to my skull - the neuro-spine surgeon rebuilt my spine from the
back of my neck thru a five-inch incision, then they flipped
by body to do the same through an incision in the front of my throat.
Talk about horrendous swelling...for weeks I would choke on my own
saliva after this double-sided surgery.  
 
I really am a tough gal. The hospital mistakenly sent me home while
there was still a staple in my skull, near my temple, that had helped
hold the halo in place during my surgery. I am brave...
got the stapler remover from my office to try to remove it
myself and it wouldn't budge. So, here is Dr. Ghosh
removing the staple. With this Photo you can also better see
 the incision across the front of my neck.
 
Here is the back of my neck, before staples are
removed. My neck was very swollen.

A few years after my cardio-thoracic surgery on the right side, I had my minor pectoral muscle removed because the jagged edges of what was left of my rib removal had literally shredded this muscle, so it had to be removed completely. Great, more scars and more muscle removal.


Here I am --- three years ago ---- I made it to age 40!
 Then, I had other things hit me. Such as my gall-bladder dying - no gall-stones, it just died. Three months later I had a horrific surgery to remove a large mass on my right side that required the dissection of my 10th rib. The surgeon really didn't do a great job. You can see from his staples, compared to the staple job on my cervical spine (back) that the abdominal staples were not neat. For six weeks, the wound still bled heavily and I knew something was really wrong. It took a couple of months before they could remove the staples and things did not feel right. Every staple had infected my skin. However, I have been through so many surgeries that I told myself to be patient.

Little did I know, patience would not be enough. Three months later, I was back in surgery because the internal incision had not closed. I don't think this surgeon did a superb job; I believe he was too concerned with setting record time with his surgeries instead of taking his time to do a worthwhile job.

My abdomen is very swollen because it's been pummeled.
This is after the removal of my 10th rib, a large mass and the
staple job is horrible. Did it hurt? Yes.

Within a six month period, I would have
THREE surgeries in this area.
The next surgery of re-opening this same incision
found me with stitches instead of staples - MUCH BETTER -
and a drain tube that definitely alleviated internal bleeding pressure.
But, the tissue transplant had internal sutures all around it
and I could feel those tug with every movement along
with the external stitches. There's no telling how many
stitches it required to accomplish that tissue transplant.

So, back into the hospital I went after a team had reviewed my file, ordered multiple tests and consulted each other. It was determined that I would need one of the largest tissue transplants they'd ever done, but the main problem was the the area of abdominal tissue separation went up so high on the rib cage that they couldn't figure out how to attach the tissue transplant to my body without having to attach it to my ribs. This would have created terrible pain every time I breathed.

On my end, I could not conceive that my painful, bruised abdominal incision would need to be re-cut. I had not even healed from the last surgery and they needed to butcher me again so that I could indeed heal. It was mentally disturbing.

The high-tech surgeons at St. Luke's Episcopal Hospital in Houston, Texas decided that this open surgical wound could not be patched with plastic mesh that is normally used for run-of-the-mill hernias. This was a surgically created, massive hernia...also possibly caused by my body's inability to heal as fast due to steroid treatment for my Addison's disease. Let's see...die or take the steroids daily...I kind of like breathing, so there's not a choice.

During this time of multiple surgeries, our house was destroyed by
Hurricane Ike. The interior was ruined and had to be gutted.

Here are the lovebirds. Again, this me being strong enough to take
a trip within four months of getting the tissue transplant.
I am 41 years old.

To close my abdominal gaping wound, the surgeons decided to use swine tissue that the hospital developed in their own labs. This option is not even available to so many people...those people end up with plastic mesh. Swine tissue is less likely to be rejected and my own tissue was supposed to weave itself through the transplanted tissue to create my own abdominal wall again.

To be honest, I was initially disgusted. For real? Swine tissue? Then, I learned that the military is making great strides in their attempts to repair horribly damaged tissue in our injured soldiers and swine tissue is the stuff that has helped many soldiers recover from injuries that would otherwise have killed them. So, I gained a fresh perspective...made a few jokes about being thankful that I didn't have a pug nose, but I might have a slight bacon flavor. Since I love Emeril, this is A-Okay with me.

In all seriousness, I was told that this tissue transplant saved my life. My abdominal wall was missing and with the 10th rib removed --- which ribs normally offer protection for your organs, my organs were shifting and without a strong abdominal wall in place, one wrong bump or push could have caused organ trauma and a fast death. So, I was thankful to be among the ranks of our soldiers and thankful to the swine for their contribution to my life as I know cardiac patients are thankful for pig heart parts, valves, etc. Our hero, the pig.

I'm glad that I didn't get a chance to erase everything and that I have several photos still around that document those surgeries with such a personal touch.

But, the REAL question is...Does this mean that I am a cannibal if I eat a BLT?

Four months after my 3rd abdominal surgery I'm snorkeling
in Cozumel, Mexico --- in deep waters --- no fear - enjoying the
chance to forget my constant pain.



12 comments:

  1. Somehow I missed the post title and the first paragraph and quickly scrolled down to see your pics first... ;) oh Lana banana, you certainly have been through a lot of traumatic surgical stuff. I admire your faith and strength. You're right, it is good for us to know that it is possible to go through such tough surgeries with Addison's. Keep on telling us, girl!

    question for ya: have you always been on the same steroid, and at what dose? I know I should be more proactive about my bone health and such, so any advice you have would be great. I take HC currently, but my doc suggested adding in dex because I feel so bad in the mornings. I was not excited about the possibility- so for now I am just taking 5 more mg of HC a day.

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  2. Suzanna...I've not always been on the same steriod dose, in the beginning, I was on high doses and I slowly tapered myself off --- making adjustments daily to how I am feeling or as to what is going on in my life that might require an adjustment. Your bone health is extremely important. I did not take enough action to counteract the steroid impact and just the impact of aging with health issues, and I likely had an old injury that worsened with age. In the mornings, I keep my medication and a glass of water by my bed (I usually have multiple drinks by my bed) and I take 15 mg of HC upon waking and I wake up early enough --- usually about 15-20 minutes earlier for me to let it kick in a bit before jumping out of bed to start my day. It helps. If you don't feel good about 9-10 am (depending on when you wake) then I would take another 2.5 to 5 mg until you start to feel more energetic. There are days when I only need 15 mg per day and there are days I need 35-40 mg per day, depending on the stresses, etc. of the day. I'm not sure about dex, but I've been told it is not as good as HC for us Addison's patients, not at all. I'd definitely try extra HC first and play around with your dosing schedule to increase your morning dose because your levels just might be extremely low in the morning and require more than average. It's so individualistic. But, to be truthful, most of my mornings are kind of rough, but I usually attribute it to my pain level, but it is also Addison's related.

    Let me know how things go for you - I think about you a lot and am always rooting for you. I love reading your blog --- you are so sweet and I feel blessed to know you.

    Lana

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  3. Wow Lana, What a medical journey. I can relate to you all too well. You handle your disease with much grace. Best, Lisa aka HypoGal

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  4. It's definitely been a journey --- that's for sure! It's not one I'd ever have thought I would be taking, but here we are! Regardless, my journey has taught me more about life than anything else could have done. I feel as if I have an edge...I'm blessed.

    Lana

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  5. Lana,

    Oh my, I wish you were here...I would give you a big hug! I can not believe how much you have been through and with Addison's. I am new here and still reading all your stories.

    You have endured so much in the past few years, I hope and pray that you get some peace now.
    I feel your pain outside this forum; your story brought tears to my eyes. This is just too much for one person to endure with Addisons.

    You are a beautiful person inside and out for helping others by sharing your experience. Your experience is helping me see that their is a light at the end of this tunnel. I have cervical issues as well. No surgery just yet, just traction. You are a great inspiration to us all and brave to share such trauma. Thank you for sharing your story. God Bless!

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  6. Linda,

    You are such a support system and your encouraging words show your place in this world as being someone who can make others feel good, even when they have suffered. Thank you for your hugs...they mean so much to me!

    In truth, I have endured a lot, if I stopped to put it all together, I think I would crumble. Thank goodness we get to take things day by day, but I will admit that there are times when I feel as if I cannot take much more piled on top of me. I need to get a big breath of air before the next battle. Sometimes it feels as if there is not enough time in between to catch my breath, but I keep going for as long as I can and with as much strength as I can muster!

    Your tears help to carry the burden. I do the same for others. If there is suffering, I don't harden myself to it, I feel it and know that our compassion is linked. It makes us know that we are not alone and others are not alone, we feel for each other. Everyone has experienced some level of suffering in some area, we usually can relate to each other --- the people I feel sorry for are the ones who no longer allow themselves to feel because they are too hardened or too detached from humanity. No matter how much I go through, true battles of pain and struggles...I stay connected to humanity. And it's good...reaching out also gets me into touch with good people such as yourself. I appreciate you reading and letting me know your responses, no matter how raw they might be. That is also brave.

    Thank you for feeling I'm beautiful, even with my scars and imperfections which are tremendous, I appreciate you seeing me as beautiful. In that area, I still struggle. All these health battles have changed me and it's sometimes hard to look in the mirror and not feel as if I recognize myself. But, I try to keep adapting! I adapt because there is a light at the end of the tunnel. There are things to cling to that are precious and worth our energy. I am saddened to hear about your cervical issues and traction! Eeek! I was told to try traction and to get home traction set up, but never did. I've found that when my neck gets too compacted feeling...I lie down and kind of hook my neck onto a pillow and slowly pull my body downward on the bed to get some separation. There's not much relief I can get with all the hardware, but the area above and below the reconstruction is the area of most pain these days. If you can even get some relief with traction, it is worth it.

    Thanks again for reading and God Bless you as well!!!! Stay in touch!

    Lana

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  7. I am so thankful you write this blog... I've been searching for info and help. I am impressed with you--You live life!
    I have not found a place to be well enough to do that yet. Walking winds me, and my legs shake from weakness. But it's not as bad as it was over the winter and spring and summer... so I am making progress slowly. I've lost a lot of muscle the last couple of years.
    I was recently Dx with adrenal failure Addisons after just about 20 years of misery, followed by one year of serious unwellness. Last year I knew something was seriously wrong.
    I had one Dr who figured out I may have an issue with my adrenals after countless Drs and tons of medical bills in search of a reason. My thyroid is a little low... but the real issue is my adrenals. Last year I hurt so badly I thought I might be dying. Sounds dramatic, but... what else could cause that kind of pain, exhaustion and my entire system just shutting down? The fainting started in earnest this spring and summer.
    I've not been offered any medications other than thyroid meds (low dose) and the rest I am doing on my own... natural health stuff. I have to make myself eat every single day. nothing tastes good and I have no appetite.
    I read through some of your posts and I was stunned to read the foot dragging symptom. I have that and have for several years. I had no idea it was due to failing adrenals.
    And the "elevator feeling"... I get that all the time too. I had connected a lot of other things, but it seems the more I learn, the more I realize the symptoms are all connected and related to Addisons.
    I'm struggling a lot with stomach issues at the moment and just getting enough calories. Everything makes me sick. But I suppose I know now why!
    Thank you again... this is very helpful. A lot of head nodding and tears and "uh huh!" going on.
    I wish you well and to keep living your life with so much enjoyment!
    Hannah

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  8. Hannah,

    I encourage you to keep researching and doing your best to get tested so that you can get s solid diagnosis and treatment. There is no way to treat Addison's long-term without life-threatening complications that could leave you with brain damage or death. A condition that causes blood pressure to plummet can cause the brain to the starved of oxygen and can cause your organs to go into failure, so it's best to get tested. Get an AM Cortisol test done so that can give you a good start.

    I am always concerned about people who start getting treatment for Addison's without a proper diagnosis. The treatment for this disease can be harsh. The fact is, there are no long-term studies of treatment effects and we are still the generation of guinea-pigs, so it's best to do all you can to get your medical testing in order, then to begin a regiment of treatments that will surely go through your own body's test and trial stages to figure out what works best for you.

    There are also other medications that can help with other side effects of living with Addison's, but getting the right medicines in the first place can ward off many issues that come with being undiagnosed and untreated.

    I would definitely push for an AM Cortisol test and make sure you follow the directions for getting the test early in the morning, when you normal hormone levels should highest. If your levels are out of whack, that will be a good start to understanding your adrenal problem.

    I am so sad that you are dealing with such struggles. I have been there --- it took forever to get my diagnosis because the possibility never crossed the mind of so many doctors I saw during my desperate attempts to get an answer to my declining health. And that's the problem with having a rare disease...it's not on the top-of-the-mind of most physicians because those aren't the problems they face daily.

    Anyway, stay on top of it. Get that test done, at all costs, get it done. It's a rather simple blood test and it can be life-saving.

    I'm glad you are reading. Keep in touch and letting me know how you are doing. I'm rooting for you to get treatment and to feel better!!

    Lana

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  9. Hannah, I erased, by accident, part of the post, the 2nd sentence SHOULD read,

    "There is no way of treating Addison's long-term, with natural or whole substances, without life-threatening complications that could leave you with brain damage or death."

    You would need steroid treatment to sustain life. The lower your levels get, the more impossible it will be to live or function and food or the wholistic route is inneffective against this disease that requires very specific treatment, which is powerful and addresses many problems caused by this disease. So I am always encouraging to others who feel as if they have Addison's to get it confirmed and then start taking medicines for treatment THAT DAY.

    You cannot hold off on such a thing...it can become critical to where you no longer can make decisions because of the way an Addisonian Crisis leaves you.

    Lana

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  10. thanks for sharing.

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  11. Did you see an internist and consider Lymes disease?

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    1. I see an internist on a regular basis and I believe he has checked me for Lyme disease, but since we live in the country full-time now, I had thought about getting checked once a year, just in case. At the point of my surgeries, I had been tested for everything under the moon. Blah. :-)

      Lana

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