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01.18.2011
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Better Days

Things have been much better this week.  The changes are going much quicker and MUCH less painful.  The granulated skin is really covering the bulk of the wound and we are seeing some acutal healing around the edges.

The one thing I have to really remember to start doing it stretching my arms over my head and around.  With the healing really starting I have to make sure I don’t get any movement restriction.

When Armand did the changes over the weekend, he used a lot more saline than Robin had been using before.  And we went with a larger bandage over the gauze to help the skin that was being taped rest.  Well, it looks like that has been the thing to do.  The wetter the gauze and the less pressure of the larger bandage seems to help keep the gauze from sticking so much.  Of course, the fact that it is healing is helping as well.  But we continue to keep it very wet to maintain the better changes.

2nd week check up is tomorrow.  We will see if we get yelled at for using too much saline.  We are still going to talk to the Dr about the alternatives to the gauze/saline dressing that we have been researching.  There are a couple things out there that seem to offer a much gentler dressing change and even if they are harder to get or more expensive than just the gauze, I am willing to try it.

I will post an update after the appointment and the new 2 week pictures.

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01.16.2011
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Thanks

I want to thank everyone for their prayers and messages of encouragement.  They are really helping and I appreciate everyone one of them.

The weekend hasn’t been too bad so far.  Robin generously asked if she could work from home next week so she could stay and help a while longer.  Her boss was great and said yes.  So she took a quick trip to New Bern leaving Saturday afternoon and will be back Sunday for dinner.  It’s just so reassuring to have her here.

That left Armand to do the evening bandage change and he will have to do the one on Sunday morning as well.  He did a great job.  And he even put up with my nagging and saying “Robin does it this way, or Robin doesn’t do that…” :)

It all looks good and we can see the granulated skin that we are supposed to see.  It just seems as if the saline gauze is sticking more and more.  Therefore causing more and more pain at the bandage changes.  I can go all day without much pain.  It’s just when we have to change the saline gauze.  And knowing that it is coming up, I get anxious about it.  I try to be proactive.  I tried the Tylenol 3 but it just didn’t cut it.  So I have had to go back to the Percocet.  But I am taking an anti nausea with it, and it seems to be helping.  I am not so woozy and wobbly taking them both.  And it takes the edge off the changes.

Again, the pain during the day is minimal and manageable.  I know a lot of folks look at the pictures and say “how does that not hurt like hell”.  Well, pain is realative.  You have to remember that I was living with a certain kind of pain for a long time.  Anything less than that, or even different than that if it takes that original pain away is an improvement and makes it manageable.

My biggest obstacle is remembering that my body has a big job to do in filling these “holes”.  I have to remember that I am going to be exhausted even though I haven’t done anything all day.  That’s a strange feeling.  I’ve always had that problem though.  Anytime I start feeling better from anything I try to do too much too soon.

This has forced me to slow down.  Listen to my body.  Think about myself and what I have to do to take care of me.

But I miss holding that little one.  Man is she being a trooper and being really good for everyone who is pitching in.  Judy took her to a birthday party yesterday and they had a blast.  And she is being so good for Aunt Robin and Daddy and Danielle.  With all that is going on we could be dealing with many more meltdowns and tantrums, but she is holding her own.

She has seen the wounds.  I didn’t want to scare her, but I also don’t want to keep anything from her.  She came in the room one morning during the bandage change.  She just looked at it, curled her nose up and said YUCK!  Then went on her way with her bunny looking for a toy she had lost.  We make sure she isn’t near when Robin is actually removing the gauze in case it is bad.  We don’t want her to hear me crying or yelling (or cursing LOL).  But I am ok if she wants to see “Mommy’s boo boos” so she understands better why I can’t pick her up or play with her.

So thanks again everyone.  I don’t get a chance to answer all the messages, but I promise I read them all and Love You All for the support and encouragement!  I will continue to keep you all posted on the progress.

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01.14.2011
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Bad Day

Ok, yesterday was the worst day to date.  After Wednesday was so painful and stressful with having to drive all the way to Chapel Hill and then feeling sick the rest of the day, I had decided that I was done with the Percocet.  I didn’t sleep well the whole night for feeling sick and I know it was from the pain killers.  So I made the decision to just handle it with Alive.

It was going pretty well.  I handled the morning bandage change pretty well and took a nap whne it was over.

When I woke up, it was to more stress dealing with my Daughter and her behavior at school.  Plus I felt that I was so far behind in work that I needed to gt a lot done.   It was just a very emotional day that really didn’t have anything to do with the surgery itself.

Then it was time for the evening change.  I took an Alive at 8 pm and waited for Robin to come to say that Avery was in bed and I could take my shower to take off the bandages and clean the wounds.  Already being emotional, and having had a day full of “why did I do this?” Naturally the bandages would decide to be difficult in coming off.

I sat in the shower for a good half an hour trying to let the water loosen the gauze from the wound.  It just wouldn’t come off.  And it hurt like hell.  Robin even had to get into the shower with me to help.  I felt so stupid sitting on the shower stool crying like an idiot little girl.

Well finally it came off, again hurting like hell.  The first thing I noticed when I was able to open my eyes was the amount of blood on the gauze.  And I thought I must have just done too much that day. I had never had that much blood in the  bandage before.  I thought, hmmmm, I wonder if that is what they mean by bright red blood, and should I call them as the discharge papers say to do if I see it.  Then I realized that there was blood dripping on the shower floor.  And not just a little.  When Robin realized it, we both decided it was time to call the Dr.

She bundled me up in towels and had me lie on the bed and called my brother Bill in to get the discharge papers and call the Dr on duty to find out what to do.  As Bill was transferred from person to person Robin sat beside me to keep pressure on my arm and we kept trying to see where it was bleeding.  Of course leave it my family to make a joke out of a tough situation. Each time Robin removed the gauze, literally, blood would squirt out.  Like an arch through the air.  All I could think about was Dan Ackroyd and the classic SNL Julia Child skit.  Then we were all laughing and saying “I just cut the dickens out of my finger” LOL

We did not get a very good response from the Dr on call and he just kept saying to put pressure on it. Well after 15 minutes of pressure, it was still squirting out. Robin told Bill to hang up on them and call 911.

So the Fire Dept and Paramedics show up about 10 minutes later.  We asked them to keep the sirens off so it didn’t wake up Avery.  The most frustrating part of the whole ordeal is the fact that I had to explain why I these large wounds under my arms.  The Firemen, Paramedics, LPN and RN had no idea what hidradenitis was or why I would need to have all that skin removed.  I had to go through the whole thing so many times.  Or maybe it was there way of keeping my mind off of everything.  Who knows.

Robin followed the ambulance to the hospital up the road. Not too far away.  After explaining the surgery a couple more times, I finally saw the ER Dr who finally at least knew what I was talking about.  Turns out it was most likely a spot that was cauterized during the surgery, that got loosened and came off during the bandage change.  He was able to inject lidocaine and epinephrine to numb and dilate the capillary that was hemorrhaging. Then cauterized it again.

So it turned out not to be a huge problem, but scary.  I have never seen so much blood.  And to see if coming out of me and literally dripping down my arm and side….that is a bit disconcerting.

They waited a while to make sure it didn’t start bleeding again and then sent us home.  Robin and Bill got me set up in my room again, but sleep did not come.  I was so afraid to move my arm for fear that it would start bleeding again.  I am still worried about taking the pain killer.  I just hate the way them make me feel.  The ER Dr did give me a new prescription for something not so strong.

All in all, the worst day so far of the experience.  Definitely second guessing the decision to do this.  of course, nothing I can do about it now.

And to top it all off, Armand was in LA yesterday.  He was already scheduled to come home on the red eye, but I knew he would be worried and feeling helpless.  But I have to say I have the MOST AMAZING support system.

Thank you Danielle for coming in at the last minute.  I just didn’t know if I would be admitted and thank you for willing to come in and stay the night to take care of Avery if Robin and I didn’t get back last night.  Bill had to clean the bloody mess of a bathroom and bedroom after we left in the ambulance.  And had to deal with calling Armand.  Bryan drove all over looking for an open McDonalds so I could have a cheeseburger when I got home. (I was shaking from the epinephrine and getting over the shock and needed something to eat).  Robin was amazing and didn’t pass out once with all the spurting blood.  LOL.

The next obstacle is the bandage change today.  I am so no looking forward to it.  I know it will be fine, but I will still be a bundle of nerves when it comes time.

Not the best entry to date, but it was my goal to show the good the bad and the ugly of this disease and surgery so the next person has all the info they can have to help them make their decision.

Gonna nap now.  And get ready for the next change.

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01.13.2011
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1st week follow up

Had my first week follow up today in Chapel Hill.  Due to the lovely weather, we had to leave early to make sure we didn’t end up late.  Naturally, we got there early.  lol.

This was my first outing since coming home from the hospital.  At that time, the nerve blocker had not yet worn off, so the ride home from the hospital was fairly easy.  Today, was a different story.  I am usually dealing with motion sickness when I don’t drive.  It gets worse when I have taken a pain killer and as also dealing with pain itself.  Lots of deep breathing and good conversation from Robin to keep my mind off of it all, and we made it with no issues.

Before going in we decided I should take a pain killer so it will have time to kick in before the bandage removal my the Dr.  I have to say that Robin should be the nurse.  Because the one who did the removal today needs to take lessons.  OW OW OW.  I have never bled after Robin removed the packing.  But both sides bled today when the nurse took them off.  And I promise, I let her know it was hurting. :(

When the Dr came in she was very happy with the way things looked.  And with my pain tolerance as well.  I know I have been saying that the pain is just now showing up, but apparently, most others who have this surgery have a harder time dealing with the pain.  I think it is just relative.  Does it hurt?  Yes.  Does it hurt more than an active cyst? No, just hurts differently.  And pain killers actually work with this pain.  They were never able to touch the pain from a cyst.

She was great answering all our questions and said we were doing a great job taking care of the wound; cleaning, packing, taping.  Robin will have to make sure to teach Armand and Danielle her new SKILLS so we can keep it up.

Again, the Dr says everything looks great and we are right on track. I go back again on Wednesday next week and then will start every other week.  Still looking at 6 to 8 weeks for full healing.  And we will have to continue with the saline wet dressing the entire time.  Until there is no more open wound.  That’s a lot of salt water.  The worse part of it is going to be the taping.  I hate tape.  Let me say that again….I hate tape. :)

On a personal level, today would have to be the first time I second guessed having the surgery.  Also the first time that 6 to 8 weeks felt so long.  I think just the fact that the pain is getting more consistent and the realization that I have to go through this twice a day for the next 2 months.  ugh.  I am sure it will feel better when I am able to get around more by myself.  But right now, I feel pretty helpless.  And anyone who knows me, knows that that is one of the worst feelings for me.

I have posted 1 week post surgery pic for those who want to take a look.

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01.11.2011
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Ok, OUCH

Before going in for surgery, I was bracing myself for the pain.  I had seen pictures and read others blogs about it.  The thought even made me reconsider a couple of times.  But then a new cyst would arise and remind me why I was doing this.

Then along came the surgery.  Very smooth.  Very easy.  Got out of the hospital quicker than expected.  And very LITTLE pain.  Just at bandage change time.  Only took the prescription pain killers right before we changed them.

Well, that nerve blocker they used must have really taken.  The Dr. said it would wear off in about 8 to 10 hours after surgery.  It must have lingered longer for me.  The pain is really starting to hit now, 6 days out.  Now having to take more than just motrin between changings.  But itching and stinging is a sign of healing, right?

I keep a mirror close by so I can see the areas after Robin has taken out the packing guaze.  pretty yucky.  Lots of people have asked me if I will be having a skin graft.

That is certainly one way to go.  However, after talking to my Dr. and doing my own research, we have decided to allow it to heal entirely by secondary intention.

Skin grafts, while very successfully most of the time, can cause problems too.  You would have to have another surgery to harvest the skin and graft it.  Now you have another wound site that is now at risk for infection as well.  And you are re-aggravating the original wound.

Also, the most common areas to graft from are the tummy and buttocks.  Both of these areas can be high in apocrine glands.  we don’t’ want to risk that the new skin could have the same problem when moved under the arm.  Even if it was not an issue in it’s original place.

Healing by secondary intention is a long process, but I feel a cleaner one and a safer one.  And Lord knows I don’t need anymore surgeries. :)

Have my first follow up tomorrow morning at 10:30am in Chapel Hill.  Gonna be a long slow ride.  It normally takes about 45 minutes to get to Chapel Hill from Wake Forest.  But with the expected refreeze…..we will take it easy and watch all the other crazy people like us who get out on the road that early.

While I am at the Dr. Armand will be heading to the Airport to speak at an event in LA on Thursday and gets back Friday am after a red-eye home.  Then he and Danielle get to take over for Robin who will be heading home on Saturday.

She has been a real trooper.  For a non-medical person, she is amazing.  She is fine with the gore now, but just hurts as much as I do when she sees she is hurting me.  We have our little routine down and have many questions for the Dr. tomorrow.  Like how long will we have to do the saline packing?  can I start using a water tight dressing so the saline packing isn’t getting me all wet?  etc.

I will keep you all posted and probably have the Dr. take new pics for 1 week out to keep a history of the healing.

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01.09.2011
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Always trying to do too much….

Ok, lesson learned.  Even though I think I feel great, or am not having any pain, I need to still stay in bed and let Armand, Robin and Bill take care of stuff for a while longer.

Robin was putting Avery to bed and I thought I could help things move along by going ahead and getting into the shower.  Everything was fine.  I have so much more mobility than we all thought I would.  No pain or weird feeling while shampooing or washing.  Until….

I took off the bandages to get ready to wash the wounds.  Not sure if it was the heat of the shower, the manipulation of the raw flesh when taking of the tape and gauze or the movements of washing myself….Or a combination of them all….but I almost lost it in the shower.  Light headed, dizzzy, disoriented…I basically was vageling out.  It happened once before after I had sinus surgery and the Dr was trying to clean my nose after surgery.

Vasovagal reaction: A reflex of the involuntary nervous system that causes the heart to slow down (bradycardia) and that, at the same time, affects the nerves to the blood vessels in the legs permitting those vessels to dilate (widen). As a result the heart puts out less blood, the blood pressure drops, and what blood is circulating tends to go into the legs rather than to the head. The brain is deprived of oxygen and the fainting episode occurs

I promise, I was duly chastized by everyone in the house.  I won’t be doing that again.

Then poor Robin was trying to learn how to change the dressing from Armand.  It was hot and steaming in the room because of the shower, and, let’s face it, it’s pretty gross, she had to move away and breathe a bit to make sure she didn’t pass out.  But she is such a trooper and helped finish up the bandaging saying I will get it next time. :)

It’s new to us all and as much as you try to prepare for any surgery or procedure, it is always different for each person.  I know we will get into a groove get this all down pat.

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01.08.2011
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Home Sweet Home

After 2 days in the hospital I was able to come home.  It really isn’t that bad.  Still kind of groggy, but I am sure that is the pain killers.

The pain is not horrible.  Not any worse than any flair up.  And usually only during the bandage change.

I think the area removed was larger than I anticipated, but as long as they got it al, that is all that matters.

It is hard not to be able to pick up Avery or play with her.  I am hoping it will be better faster so I can just hug her tight and not have to worry about her hurting me.

I have attached the 1st post op pics to show how much they took out and how deep.  I really is not as bad as it looks.  However, the look on Armand’s face was priceless when he had to learn how to bandage it.  He didn’t even know he was making a face.  It was really funny.

I will post again after my first return visit which will be on the 12th.

Thanks for listening.

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01.05.2011
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My Hidradenitis Story

 After 25 or so years of living with hidradenitis I have finally taken the leap and will undergo radical axilla surgery on Thursday, January 11, 2011.

This blog is meant to help folks like me who have been searching for other people’s experience with the disease and treatments.  I will chronicle my surgery and recovery in the hopes that someone else will be able to understand my experience, learn from it, and hopefully it will help them make the right decision for them.

A little background info.  I started with this condition when I was about 13.  It doesn’t start out horrible, just grows that way.  Just a cyst here or there,  occasionally.  Used to think I was just not good at getting clean. I actually thought I was lucky that I got cysts under my arms instead of having acne on my face.  Over the years it just got worse.  But we all thought they were just boils.  My Dad would get them occasionally around his hairline on the back of his neck, at his waist band and under his arms.  But only occasionally, and his never got as bad as mine.  My brother would get them occasionally too.  Same places.  My folks took me to our family doctor for draining stubborn cysts that would not pop on their own using a drawling salv or hot compresses. 

Dermatologists prescribed several antibiotics.  While they helped in the short run, and while it was still not chronic or severe, you can only be on any antibiotic for just so long.   I could put up with just so many yeast infections, and now my body is so used to antibiotics it takes stronger and stronger ones to get rid of minor infections like sinus infections and such.

As I entered my 20’s it really started to get bad.  I remember having to call in sick due to the pain.  I missed appointments while I traveled for a nail care company as a trainer.  It is really hard to be a nail tech and file away at someone’s acrylic nails when you can’t move your arm without crying for the pain.  And I gave up wearing anything that didn’t have a sleeve so no one would see the scars or possible open wounds.

It’s been hard romantically, not wanting to have my shirt off in front of my husband because it has become such a gross mess.  As much as it grosses me out and embarrasses me, I have attached photos of both my underarms to show the severity of the condition and the fact that I have even started to lose mobility in my right arm due to scar tissue.  BEFORE PICTURES.

To learn more about what exactly Hidratenitis Suppurative is CLICK HERE.

So, after much thought and much discussion with my husband, I have decided to have the surgery.  Most of the time they do not do both arms at the same time for patients who are affected in both arms like I am.  Due to the debilitating recovery, they will do one arm at a time so the patient has some mobility.

I am very lucky to have an AMAZING support system that will allow me the time to get both done at once and get it over with. 

To learn about what the surgery is CLICK HERE.

Since they will be removing a large portion of skin from under both arms and healing will be by secondary intention (healing from the inside out) it will take about 4 to 6 weeks for enough skin to grow back to function normally again.  I won’t be completely healed in that time, but enough to pick up Avery again, and work at a normal rate.  If all goes well, I should be back up to par in 3 months.

I will have Armand post here the day of surgery to let everyone know how I do and he will continue to post daily while I am at the hospital.  (they say 3 to 5 days depending upon my pain tolerance level)  If I am able to post after I get home, I will.  If not, my sister Robin, who has amazingly taken a week off of work to take care of me and change my nasty dressings, and take care of Avery as well, will post until I am able to.

I will continue to post pictures, but will keep them as links so those of you who are squeamish about blood and gore don’t have to see if you don’t want to.

So, just to recap.  Surgery will be on Thursday, January 6, 2011.  I will have radical excision of both underarms to remove all the hair bearing and apocrine gland bearing skin and healing will be by secondary intention.  Which is to say that the area that will have the skin removed WILL NOT be stitched or have skin grafted to it.  It will heal on its own.  Growing new skin over a period of time (the body is an amazing thing)

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