This 'Caring Bridge' page has been created for Dan so that everyone who loves and cares for Dan is updated on how he is doing and any other details regarding his health, upcoming surgery, the actual surgery and the healing journey after. It’s also a place you can leave a message for Dan. I would love to have as many messages to Dan prior to his surgery that is only days away. The ‘GoFundMe’ has been created to help Dan with the financial strain this has brought on by not being able to work and now needing to undergo this surgery that we pray will help but will also keep him ‘out of commission’ for some time. We actually don’t know much about the recovery until we know more of what the surgeon is able to do on the day of surgery.
The disease Dan has been diagnosed with is an auto-inflammatory disease called Hidradenitis Suppurativa (HS). Only 1% of people in the U.S. have it. With it being a very rare disease, few if any doctors ‘specialize’ in it. There is little research being done and therefore, there is a lack of resources.
Dan will undergo a very invasive surgery on October 23rd (this Friday).
What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa is a skin condition that causes small, painful lumps to form under the skin. The lumps are infected and will fill up with fluid causing pressure and pain. The way to relieve the pain is to wait until it ‘opens up’ and then allow it to drain. Most find relief after the lump is drained because the pressure is now gone. For patients that are as advanced as Dan, those abscesses stay open and constantly fill up then drain. This process causes sinus tracts or tunnels to form under the skin. The sinus tract / tunnel is a narrow opening or passageway that extends from the abscess under the skin and then extends out through the soft tissue where it stops at some point. That leaves the end of the tract open to creating its own abscess and the vicious cycle continues. The condition mostly affects areas where the skin rubs together, such as the armpits, groin, buttocks and breasts. Hidradenitas Suppurativa is not contagious.
Dan’s life with HS . . . . . . . .
Being that this is such a rare disease then it’s rarer to have it at a stage 3 and as bad as Dan’s that the treatment is a lot of 'trial and error'. Dan has tried countless medications from antibiotics (continuous) to Humira which made him so sick for months. The medications the doctors have prescribed, both oral and topical gave him no relief nor did any really make his condition worse.
It became harder and harder to work as sitting in the car on the open abscesses was very painful. He began losing weight. At one point, he had lost well over 50 pounds. His muscles are atrophied due to not moving much along with the compromised way he has to move and walk. Hiding the illness was beginning to get harder and harder as he could barely walk added to the drastic weight loss.
So much comes with this disease when it’s at the stage Dan is at. Depression, isolation, embarrassment and on and on. This is not an illness that most people go telling people about like they would if it were Crohns or Lupus. It’s hard to convey the severity of it because it can be so different from person to person. If you google it, it sounds like it’s ‘uncomfortable’ but because most people still function, it can almost sound like a really bad rash or eczema-like.
This disease is life-long which Dan has 'accepted'. He just can't accept living the way he is now because it is far from 'living'.
Job loss . . . . . . . .
Dan lost his job due to not being physically able to perform. So, now he begins applying for disability which can take some time.
Surgery . . . . . . . .
Taking the severity of Dan's HS along with the LONG list of tried medications, he is at the point that surgery is the ONLY option left. The surgery is very invasive and very serious. The recovery will be very long and painful, but Dan is hopeful for it to provide relief and the ability to do some 'normal activities' like walk INTO Target or go to a restaurant or anything that requires some mobility that we of course take for granted.
Like I said, the surgery will be very invasive. Some decisions will be determined once the surgeon begins and sees how Dan’s body is reacting. The surgeon has a large team of doctors and surgeons that will be in the operating room. The ‘ideal’ situation for Dan but also the most invasive and painful is to fully remove all of the HS. The best way to explain it is that they will remove all of the skin from ‘hip to hip’ on his back-end. The abscesses are on the top and go into the tissue, so the surgeon then also has to cut 2” – 3” deep to remove the sinus tracts / tunneling. They will attempt to keep going and remove the groin area skin and tunneling as well. There are many risks and potential complications so I personally ask for prayers (or good vibes) as he faces this surgery.
A day in the life of Dan. . . . . . . . .
To get the full picture of how this disease has affected Dan, I can quickly give a rundown of his 'typical' day. Wake up in terrible pain, especially if he slept well and took no medication during the night. He will give himself a 'pep-talk' to actually endure the pain that he knows well, but dreads to get up out of bed. He will typically change pants as his abscesses have drained all night. He will make his way to his chair and take his meds. He will then wait for them to 'kick in' so that he can 'function' - essentially sit and not cry from the pain. Aside from bathroom visits that take triple the time that it would take anyone else, that is about it. He will attempt to get comfortable moving between his chair and the bed Danny and I put out in the family room. Then it's like 'Groundhog Day' as Dan says. It's a cycle of food, meds, bathroom and back. Taking a shower is something he needs to mentally work himself up for being the energy that is exerted along with the pain that elevates from the movement. I will spare the details of taking care of the wounds and drainage, but that is part of the day as well. If it's a 'good day' - it's a win........if it was a 'bad day' - he will hope to fall asleep fast so he can start again the next day.
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If you google HS and look at photos, the people that are at a stage 1 or 2 can appear to have mild bumps under the skin that look painful, but by appearance, it really doesn't look 'horrible'. It can look very mild and treatable, and for many, it is. 68% of all people with HS are in the 'mild' category. What stage 1 and 2 mean for the person is that they have 'flare-ups'. Stage 3 is significantly worse, where they can be ‘flared up’ at all times. This is where quality of life is truly impacted. It's hard or impossible to complete basic tasks and most comfortable when not moving.
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What does advanced HS look like?
I saved some photos of advanced HS but they are not 'pretty' so they are in the link below so you can choose if you would like to see what HS looks like or not. ** None of the photos are of Dan, but similar to what his looks like.
https://1drv.ms/u/s!AlYX9epcJZjngihIo2KUQBd1sEky?e=OxmcZo _____________________________________________________________________
This disease has its own ‘stigma’ to it because of the embarrassing nature of it, but Dan feels that putting his experience out there will bring some awareness to it. No one should have to live the way Dan has and no one should have to endure the level of pain that Dan has. And it will get worse before it gets better as the surgery is terrifying and nothing that anyone should have to go through.
The only thing that we can do is PRAY and be present for Dan. Please keep Danny in your thoughts and prayers as this has been very hard for him to watch his dad suffer so much.
A GoFundMe has been set up for Dan to hopefully relieve some of the financial burden this is all causing. We only want him focused on the surgery and the healing and we hope this will help.
Here is the GoFundMe site for Dan: gofundme.com/f/dan-greco-hs-journey
*You may have to copy and paste into a new tab. I will put the link in a comment box as well.
Why am I a part of Dan's battle with the HS? Because God has a sense of humor. :)
Blessings,
Kelly
