Axis wound taken on September 29th, 2010

The picture pretty much sums up the progress of the wound as of today. Less pain now. I am now finally on the upswing of my recovery. You can still see the squares from the skin graph on the inside of the wound. The depth has decreased from 3 and 1/2 centimeters. to now .5 centimeters.
The nurses and surgeon are amazed at the rate of healing and recovery. I have to admit that when I originally saw my wound, I was sure it would take months to recover to this extent. The graph wound is getting better but has been more painful that the axis wound. The adaptix bandage is finally gone. the wound is now scabbed, itchy and peeling. I still cannot wear anything except skirts and dresses. Finally yesterday I made it to half of my sons football game. I overdid it. I thought I was recovered enough to make the attempt and the nurses gave me the thumbs up as they understood for weeks now that it was my only goal. I have missed every game since this process began. The car drive and maybe two hours away took a serious toll on me. I even said on the way home that I just wanted to cry. It really gave me a reality check. The nurse and therapist who came to see me today was not surprised that I am paying a price for the decision to go to that game. Even just half of the game. I am proud that I made it. I feel defeated that I was wrong about my own progress.

Removal of the Vac machine from the wound

Here is the wound after wound vac removal. I believe this was done on Monday, September 20th. I am not sure now. I have been in so much pain. My arm and leg prevents me from doing much of anything. I still have not been out of my house except for surgeries and appointments and didnt care to even really even make it to the bathroom. Which was another intense task in itself! I cannot stand, be seated, walk, change clothes, reach anything, or even get into or out of bed without help. Lori gives me sponge baths and shampoos my hair every few days. You can see clearly the graph from my leg, inside of axis wound. The vac machine has done an amazing job of speeding up my healing process. So many things would have gone wrong without the help of my Home health care nurses. I would not have survived without my family. I would not recommend this surgery without Insurance, home health care nurses, vac machine, family support, and lots of money in the bank. I have spent a lot of money on wound care supplies that I didnt even know existed!
Also, plan on being off work and completely unproductive for atleast a month.
No matter what your surgeon tells you!

This is a photo of what I look like daily.
I have not left my house since the surgery on 9/13/2010. I have a hard time just managing going to the bathroom, getting sponge baths, shampoo every other day and making it to bed.
I must admit when I am in pain I do manage to get to my computer in the kitchen. This blog has occupied my mind and helped me focus on other than the pain.
The outfit that I wear is a swimsuit cover as the tape from the graph wound on my leg tends to stick to shorts. Also the swimsuit cover is forgiving to my underarm area where the Vac is.
You can notice the swelling of my feet, hands and legs. My blood pressure has been high due to pain and I did have to take blood pressure meds and water pills again. My diet is high in fiber and I am taking stool softeners to avoid constipation.
Constipation is common with pain medictions.

The wound Vac machine.

This is the wound Vac machine.

It has a permanent place of residence with me now.

I am thinking of naming it, but there are no names that I can think of for it that young ears can hear!

The cord is attatched to my would vac sealed under my left arm.

I watch my blood go through the line across the floor and into a cannister that is attatched to the right side of the machine itself.

I carry the machine in the black pouch around my neck or hang near me when I am not mobile.

The machine has alarms that warn you if the "seal" to the vac on the wound has been broken. I have been careful and successful at avoiding an alarm thus far.

 I have been through one canister of blood from the wound. It has been five days since the vac was placed.

It comes with a charger.

Therefore I now have limited mobility by the charger cord and by the tubing that transfers blood from my wound to the machines canister.

The Wound Vac

This wound Vac was put on overtop of the skin graft on my last date of surgery.
It is supposed to make the healing process faster and with minimal risks of infection.
The skin graft and the wound Vac was done all in the same day 9/13/2010.
The range of motion of my left arm is now minimal and I apologize that I could not lift it entirely to show you the entire wound and wound Vac.

The "Donor" site.

I call this skin graft the "donor" site. It is where the surgeon removed layers of skin to be placed in the axis. (armpit) to close the open wound. It is a much larger skin graft than I ever anticipated and the pain of the graft site is about as painful as the open wound itself. There is much to be said about the healing of this portion of my experience as well.. for now I will just upload the picture and get into the gory details later.
This is on my left leg thigh from near the groin area to almost the knee. I will take measurements as my home health care nurse arrives again tomorrow.

Graphic video. Third day nurse visit.

This is video of the nurse actually unpacking and repacking my wound. 

Yes! Ouch!

 The home health care nurse does this daily. This was my most painful day as of yet, due to going to my Uncle's funeral. I overdid it. Lesson learned!  

Click on the the next line below to see the video.

Youtube video of nurse unpacking and repacking wound

WARNING:

Do not watch this if you are squeamish!

This video is very graphic!

The first day after surgery, after wound was unpacked

The day after surgery.
This is after the nurse unpacked the wound.
The dark spots were from "bleeds" that I had during surgery.
He had to cauterise the bleed.
Cauterise means to burn or sear.

The day after surgery before unpacked.

The day after surgery.
This is a picture of my left arm before the nurse unpacked it.
Now you can see why I have been afraid all along!

Finally surgery was done.

My surgery was rescheduled for September 1st, 2010. Again I mentally prepared myself.
We packed a bag and off to the hospital to check in  at 6 a.m. again after fasting for another 24 hours. I found myself again in a gown on a gurney with I.V.'s of gatoraid (or close to that) and antibiotics flowing through my veins. I spoke with the anesthesiologist and all set to go. After my third hour I was informed that my surgeon had an emergency and my surgery will be late. After my fourth hour waiting I was informed that the surgery will be rescheduled due to my doctors emergencies that came up that day. I was there for six hours. They took the I.V.'s out. I got dressed and now had another week of dread for yet another scheduled surgery.
I almost chickened out. Remember the pictures and experiences that I had read of testimonials before me. I could not believe that I had CHOSEN to go through the pain and risks that I would endure for this surgery and still be brave enough to decide to carry on.
I could only recall the days when my disease made my life unbearable and no one could understand. I just want an end to the suffering even though I knew it meant a lot of pain to endure for what I was told in the beginning.... near 15 days.
Finally, I went to Samaritan North on September 8th, 2010 surgery that was finally performed!
The surgeon said that he is opting to do only my left arm due to the amount of pain and risks of infection. I will have to come back for surgery on the right arm after healing.
Although I was looking forward to getting it all done and over at once, I am now VERY happy about his decision. The pain is nearly intolerable!
I have Home health care nurses now that will come daily. They will take off my bandaging( painful) Unpack the open wound (more painful!) and repack the open wound ( I thought I may pass out each time!) Then they would be back again tomorrow to do the same thing.
I now realize that there are several types of pain.
There is a constant burning pain as if it is on fire. There is surging pain that pierces through the wound only occasionally. There is a dulling (my favorite) pain that lets you feel the pain but feels also numb. AND THEN..... there is the pain that I feel when the nurse unpacks and repacks the wound!
I have no words to describe that pain. I can only say that I get hot,things turn dark and hazy and my mind wants to erase what is happening.
The nurse is a home health care nurse and I already know that these woman are wonderful angel's sent to me by amazing fate!
As usual I find Lori very tolerant, understanding and comforting through this whole process.
Here are some gory details and pictures.
Warning! The images and descriptions of what you are about to see are "graphic" and not for intended for viewing by young children and the squeamish!
It is funny now that I feel like I should come with a warning label!
The open wound measures 13 centimeters wide, 6.5 centimeters long, and 3 centimeters deep.
The measurements and pictures are very important to evaluate the healing process.

The worst is yet to come......

Since I expected the complete surgery to be done on 8/23/2010 I was extremely upset that now I will have to endure a second surgery in 7 to 10 days. I had mentally prepared myself for this surgery for at least a month. I also worked with my boss to make sure this could be done in a manner where I could miss minimal time from work without pay.
 My surgeon decided at the time of my original surgery that since I had a "flare up" of infection and boils still, that it would only be dangerous to have the original surgery done due to the infection already set in. It could in fact cause more infection post op. Since I now have a resistance to antibiotics. ( Since I have been taking so many antibiotics due to the disease) She has informed me that she will be leaving the country and now I will be introduced to one of her fellow associates to perform the surgery instead. The surgical group office has informed me that they will be calling me to see how I recuperated from the first procedure and updating on the infection that I already have before they can make further arrangements.
I will keep you posted.

right arm after packing was removed. Taken 8/25/2010

Left arm after packing was removed from inside of arm taken 8/25/2010

Right arm after surgery procedure taken on 8/24/2010

Left arm after surgery procedure taken on 8/24/2010

I showed up for surgery at Good Samaritan hospital in Dayton, Ohio. I was admitted three hours before surgery actually would take place. In a hospital gown and given bags of I.V.'s my surgeon informed me that it would be an unwise decision to perform the complete surgery  at this time as my infectious boils were still present. Infection before surgery would make my healing process and risks much more dangerous.

She decided instead to only lance and drain the infectious boils and continue antibiotics again. I was put to sleep in the surgery room and was waken in the recovery room with instructions to return for the next surgery in approximately seven more days.

This was a delay that I had not anticipated. I was told it would be one surgery. I did though, respect that I could not risk infection. Therefore, I was grateful of her decision.

Right arm prior to surgery 8/23/2010

Again infectious boils that lay deep inside of the axis (armpit)

As well as scars from recent lacerations.

Left arm prior to surgery on 8/23

Infection had set in prior to my surgery scheduled on 8/23/2010 and I had to be "lanced" and put on antibiotics of Bactrim before showing up for my surgery date.

These boils were mostly internal and not seen as intense as they actually are because they lay deep inside of the axis ( armpit). However you can see the "lumps" from the infection and internal boils.

My name is Jennifer

My name is Jennifer.

Since possibly the late 80's I have been suffering from Hidradenitis Suppurativa.
Believe it or not, I did not have a name to this disease until finally July 19th, 2010 when I was sent to a general surgeon. A few short weeks ago.
I had seen my family doctors, dermatologists and many urgent care facility Physicians about this matter.
Now, I could research it and see blogs from people with cases similar to mine.
I was amazed to know that others deal with this and that it is a disease. I am also still more surprised at the fact that my friends, relatives, and strangers have confided with me the same problem once I became verbal about it.
I decided that I should blog my experience. This is my first "blogging" attempt.  You must all be forgiving as to my mistakes. I feel that if this blog can "enlighten" just one person suffering then it was all worth while!
Even in the truth of my embarrassment of the experience, I cannot express how painful H.S. has been for me. I have learned to try to ignore the pain..... just so that I could continue to function at work, home and play. The truth be known, I just pretended that I was not in the terrible pain that I was in mostly on a daily basis. I faked the fact that my pain was unbearable and that it kept me from concentrating as well as usual on my job and usual daily responsibilities.
I never grew a tolerance for the pain but I thought I had to live with it because it was a "closet disease" for me and I felt ashamed to talk about my "infectious boils" with others. I did expose the disease to my loved ones at home and they tolerated me on days when the pain was unbearable. I finally did expose my infections to my work "family" by showing the underarm boils just so they could understand. They did understand and have sympathy. But after all we still had a job to do.
I believe that in knowledge there is power.
In the power of knowledge, you can make informed decisions. I decided to be brave. I seen the blogs, gruesome photo's and read painful testimonies of those who chose surgery before me. I have to tell you that it was one of the scariest decisions I ever made to agree to end this torment with surgery. I cannot live with the hazy fog of pain any longer. I want to live to my fullest potential and cannot do so with this horrific disease.
Please do not live with this disease full on myths just to keep from your own embarrassment. If a disease can be healed, heal it, and find yourself lucky.
I will try to post the pictures I have taken from the beginning to the end. Wish me luck on learning how to do just that!