Pre-Op w/ surgeon

I had my pre-op appointment today at MCV plastic surgery. Not much to say...they went over everything I will be having surgery on..bilateral ear lobes, bilateral axilla, bilateral torso, bilateral breast, bilateral lower extremities, and bilateral groin. They said the won't know until day of surgery exactly what they will operate on first but they are hoping for bilateral axilla and torso. They said it will take at least 3 surgeries to complete everything with other operations between for skin graphs. One of my major concerns was what I would end up choosing as far as surgery on my breast, today I told them I decided to remove them....I'd rather that then be dis-formed, they decided they would wait on that surgery till the last to give me more time to decide for sure since its such a big decision. STRESS. :) I will be in the hospital probably a week could be longer depends on how they can close each area. They will use staples to close some, "skin flap"(http://www.drugs.com/cg/skin-flap.html) to close some, and some will be left open and need graphs. When I get home they will set up a home care nurse to come out a couple times a week. They will have to insert drainage tubes that I will have for a little while, but they shouldn't be that big of a deal, just need to be emptied. Surgery is March 31...6am. I still have a couple more pre-op appointments, but nothing big (I hope) until then.

Medical Update: All things happen for a reason.

I've been out of the hospital almost 2 weeks now, and unfortunately things aren't progressing very well. I'm still dealing with pain and inflammation on the left side of my face/neck/ear. I go back to the doctor tomorrow for a follow up and more test.

This recent stint in the hospital has caused my surgery to be postponed to March 31. I was supposed to go under the knife in 2 days. I've awaited this surgery for months and months and was so happy the time was almost here...and now I sit...waiting, yet again. I have mixed emotions about this, I'm bummed, and I'm at peace. I know that doesn't make much sense, but I believe everything happens for a reason.

This infection was literally out of the blue, overnight thing, which is pretty rare...normally the infections take days to grow, and I have warning signs, I know my body and my disease...but this literally just popped up. I know you all saw me bitch and complain that I had 23 IVs in the hospital and they finally put a PICC line in. Well the reason I had to get so many IVs is because within minutes the vein would clot. Sadly the same thing happened with the PICC line, which is apparently rare...when they went to pull blood, it had clotted and they couldn't get anything. When I had my blood drawn at my MCV visit last week, it took 3 IVs because they would start drawing blood, then stop. They had 3 nurses/techs working on my IV...finally they got one, they drew one tube of blood and one of the nurses looked at the others and said "do you see this" as she is holding my tube of blood. One of them responded "shes clotting fast..looks like mud" this was within secs of them pulling it. They then stated no wonder I couldn't keep and IV. This is something I'm currently reviewing with my doctor, but it looks like I have a clotting disorder which is definitely new. The revelation of this explains a lot about how my hidradenitis suppurativa has been affecting me lately as well. My point in this long story is, I honestly feel this current infection was God's intervention to not have the surgery on Feb 3. I believe there are still some underlying medical conditions that could possibly be fatal to me on the operating table at this time. I will be undergoing a lot of blood work and test to find out why I'm still not healing, and why my WBC (white blood count) is still high, and why I am clotting so fast. I want to feel safe on March 31 when I have the surgery.

For those of you who are tired of hearing about my surgery, I'm sorry. I know my explanation of the surgery to every one is simply, I'm having my skin removed. I don't know how else to explain it simply. This surgery is very serious, and will literally consume my life for a very long time. I will try now and explain it in a little more detail. The actual surgery name is Radical Wide Excision Surgery. The first surgery they will be removing the skin under my arms, torso area, down to the muscle. They will also be cutting the "chicken flap" of my arm off, removing the diseased skin and stapling it back together. The torso area will be left open to heal, a large open wound. They are also going to try and do my breast in the same surgery, but they said it depends on how much they remove from the torso area, if they will be able to do it in the first surgery or not. If they are able to do my breast, there are two options. A. they can cut off the bottom half of my breast and staple it back together which will heal as "cones" (I'll have to pad bra's to look normal, and my breast will completely be deformed) B. I can have my breast removed. (This decision as a woman is very hard). They don't know how long I will be in the hospital but they said I should be able to come home quickly. I will then have a home care nurse to help with wound care. The doctor told me "You will be in pain, a lot of pain, there is nothing I can do or give you to make you comfortable" of course they will give me plenty of pain meds, but he was just letting me know if I decide to do this surgery, there is no easy way out. I'm going to post a couple pics, one pic is day 3 after surgery, the other is day 32...these are very small considered to what I'm having done...I'm having the entire torso on both sides removed, but they will give you an idea of what I'm up against. They are very graphic, please be advised.

2010

I had a wonderful night bringing in the New Year. I hung out with some old friends, and it was nice just to get out of the house and spend quality time with people. It was honestly the best New Years I've had. Just a good time, with no drama (which tends to follow me). I'm excited about this upcoming year and hoping it brings only good things. Although, I am nervous since I will be starting my surgeries Feb 3. So this year will be spent in and out of the hospital and recovery. However, I'm hoping this journey will be a start to a new life for me. Fingers crossed and prayers lifted it will all be okay. I'm ready for this battle in front of me, and ready to begin a new chapter in my life. I hope everyone has a great year, a positive year, and grasp the true meaning of living.

Upcoming HS surgery..ies.

Well the time has come for me to start a difficult journey undergoing many painful surgeries, hoping the outcome will help my hidradenitis. I have put off major surgery for my HS (hidradenitis suppurativa) for years, for many reasons. 1. I'm afraid of the pain. 2. There is only a 50% chance, the surgeries will work. 3. There is high risk of infection..which could lead to death.

It took me 4 months to finally get into the plastic surgeon, because of my insurance. During this time, I studied the surgeries I could have, and spoke with many people who have had the surgery. I knew what I wanted when I walked in the Dr's. office. I told the surgeon before he even looked at my skin, I knew what I wanted, then he asked to see all of my skin. Without any hesitation he said we will schedule the surgery as soon as possible. He didn't sugar coat anything, he asked me if I knew what I was in for, and I did. He told me it would take a long time to heal from each surgery and it would be extremely painful, and no amount of pain killers would keep me out of pain. I just looked at him and cried and said "I'm dead inside, and I need my life back no matter the cost." He understood from the pain in my eyes. I should know by the end of the week the date of the first surgery. He said probably around a month, I'm hoping for after Thanksgiving, but before Christmas.

I opted to have my axilla and torso area done first. (I will ultimately have my axilla, torso, breast, stomach, groin, legs, bottom, and ears done) The surgeon said depending on how surgery goes he might do my breast during the first surgery as well.
The surgery is called radical excision surgery, they will actually remove all of my skin in those areas. On my arms (the part I call the chicken flap..lol) they will just remove the diseased skin and pull to staple the healthy skin together. On my underarms down the torso they will remove the skin about 6 inches across and 12 inches down (what I'm guessing will be the measurements) This will just be open flesh that will be bandaged, and left to grow new skin. Skin graphs will probably be used after a period of time to help the skin grow. The surgery on my breast will have to be stapled because of fear of infection, which means, my breast will be completely deformed when they are done. This has hit me the hardest as a woman. I'm really emotionally torn up about it. My body is covered in scars which is bad enough, but to have your breast mutilated is on another level. My insurance will not cover surgery to correct them in the future, because it is an "elective" procedure.
In a couple years when I've healed from all the surgeries, I'm going to have a SAVE the BOOBIES fund raiser...lol. On a serious note, if anyone knows a plastic surgeon, that might do probono work, please let me know.

Now for the crazy part, guess how long I will be in the hospital? 1 day. That much skin removed, and only one day in the hospital, that kinda scares me, but at the same time, it will be nice to be home. They are going to set up a home nurse to come do dressing changes, and I will work with a pain management specialist, they said I will probably be on Oxycontin all the time, plus meds that will make me sleep the whole time, but I would get "really good drugs" right before each dressing change. Those will not be fun.

I've known for a while I was going to go ahead and start the surgeries, however, now that the time has come to schedule and get them underway, my mind is going crazy. I'm so scared. The risk of infection is high, the risk of permanent nerve damage is high. I'm so scared of the pain that is to come. However, what bothers me the most...I won't be able to hold my niece or hug my nephews for months and months. It literally is tearing me apart inside.

I plan on taking many photos along my journey from beginning till end. I will post them when I can, but be aware now they will be very very gruesome and not for the squeamish.

I've been going through a battle with my HS over the past month with a "hole" in my leg, and I haven't been able to do anything. Pain or no pain, I've only got a few weeks before I begin my journey and it could be a year or more before I'm able to just get up and go again, so I am going to make the best of these next few weeks, and try to get out some, and I'm going to hold my niece and nephews as much as possible.

When all is said and done, I'm hoping for a positive outcome, and to have my life back or at least some of it. I'm trying to stay positive, but I'm not going to lie, I'm terrified.

(I have been very blessed in meeting and talking with many people on facebook with HS, and a couple people on twitter, who I've become very close with that are currently undergoing these same type surgeries. They keep it real with me, but the keep me thinking positive and telling me to think of the future instead of the now. I really want to thank them for being so great to me, and for their friendship, love, and support.)

Halloween

While all my family and friends are getting geared up to celebrate Halloween, today is one of those days, that I lay in bed and cry. Halloween isn't considered a "big" holiday, but when you have nothing but time on your hands to think about how much your life has changed, holidays period are a big deal. I wish I had the energy or strength, or even desire to go and celebrate, rather it be dressing up and going to a party or taking my friends kids trick or treating. These are things I used to do. With all the pain, and medication, simple things are hard to do, and to even imagine, a full night out...brings to much anxiety. What makes me even more sad, is that I have alienated all my friends to the point, they don't even invite me to do things anymore, because they know I won't/can't. Still the invites were nice. I'm just bummed and in a mood. I hope everyone has a great Halloween!

I need my life back.

I've officially been living back home with my folks for a little over a year now, something which I never thought would happen at my age. I'm thankful that I have a place to live, a roof over my head, but its definitely not what I had in mind at this point in my life. I'm hoping to move sooner than later, still waiting on disability to be approved, there is so much red tape and hurdles to jump, I'm just ready to have it happen.

I have tried so hard not to have major surgeries for my HS, but the time has come that I can no longer put them off. I'm cutting daily (I&D's), and I feel like I've had flare up overlapping flare up for almost a year now. Things are not getting any better, so its time to do something. I go on November 12, 2009, to start the process of scheduling surgeries. There are so many options, I'm just not sure what to do. I could have it all done at once, which would keep my in the hospital for a while, and quite a recovery period, or do them in stages. I truly haven't made up my mind. Hopefully the surgeon will give me guidance, however the decision will ultimately be in my hands. I'm pretty scared to be honest. Having HS, the risk of infection is so high. As with anyone having major surgery the fear in the back of my mind is "will I make it back home." The sad part about HS surgeries, statistically there is only a 50% chance of remission with surgery. Its a huge gamble. Sometimes you just have to roll the dice.

I'm at the point in my life, where something has to give. I laugh when I say "my life" because honestly, most days I'm not really living. I'm just here. I don't work anymore, I rarely see my friends. I stay shut in my room, because I don't want to be a burden on my folks. I feel if I stay out of their way, I'm doing them a favor. (They don't feel this way, this is how I feel. They are often upset that I lock myself away.) My only connection to life most days is social networking like facebook and twitter. Wooohooo! I don't answer my phone very much anymore...I really have nothing to say to anyone. The only thing I have to talk about is doctors and hospitals, and I'm sure ALL my friends are sick to death of hearing about that. I'm sick of being me. I need my life back.

I know this sounds so negative, however, its reality. I can't speak of anything else. I do try and stay positive as far as my future, and I have high hopes things will soon be better. I also recognize there are many things that people face much bigger than what I am going through. Things just get cloudy sometimes. I enjoy my pity parties every once in awhile, but you're not invited. :)

HS on the Today Show

They did a segment on the Today Show about a woman with Hidradenitis. Even though it was briefly discussed...its a start.

To hear this woman talk is like hearing part of my own story...it's her story, but for all that suffer with HS it's our story. I'm hoping with it being on National tv it will raise awareness...be a beginning, for research, treatment and a cure.


This is not a part of my life...it is my life...my constant, my everyday.

You can watch the segment here:


http://today.msnbc.msn.com/id/26184891/vp/32673605#32673605