Dustin's Journey with Hidradenities Suppurativa

Dustin's Journey with Hidradenities Suppurativa This page is to keep everyone updated on Dustin as we navigate Hidradenities suppurativa. Dustin was diagnosed 11/2020. with this disease that has no cure.

As we learn, we will share to raise awareness, we are located in Wahoo, Nebraska

12/31/2023

Happy New Year to our followers, Dustin remains in remission he continues to be followed closely by the specialist for any side effects. We truly believe all your thoughts and prayers has helped with this journey.
Our hopes for the new year is long term remission, no surgeries, and no horrible diagnosis that can come from Humira. Again thank you!!

10/09/2023

Thank you to all who have prayed and sent good vibes, Dustin is finally in remission!! We will take this day by day and pray he stays in remission

03/28/2023

Update...
Yesterday Dustin saw an ocular immunologist, he didn't have alot of great answers for us. Dustin was given several eye drops during the appointment as well as two ultrasounds and they took ten tubes of blood.
Because his vision hasn't returned in four weeks he decided to change his drops, these are the 5th, 6th new drops one is 6 times a day the other two. The doctor asked if we'd be ok making Dustin's situation a case study, I absolutely agreed.
Great news is his Hidradenities suppurativa has been very controlled, besides some pain in his eye and his vision I'd say he's doing good.
We've learned to find joy and laughter in these days and yesterday it was mastering the stairs at the Med. Center. It was a good laugh for both of us, he's such a trooper.
Keep those good vibes, hope and prayers coming. Thank you for following his journey.

Dustin had a follow-up at the Med. Center today (UNMC) they did a scan of his eye and nothing has has changed from last ...
03/08/2023

Dustin had a follow-up at the Med. Center today (UNMC) they did a scan of his eye and nothing has has changed from last week. They are starting a new eye drop and we will continue to hope for his vision to return and some pain control. We follow up next week.
We hope you continue to pray and send great vibes so that things will turn around for him!!

02/28/2023

Dustin starting having a watery eye last Wednesday, Thursday we thought it seemed better although he couldn't hardly open it. Friday he saw the pediatrician, they thought it looked like a scratch on his cornea.
The eye seemed to get worse so today he saw a cornea specialist at the Med. Center. UNMC. He was diagnosed with Uveitis, Uveitis and Hidradenities Suppurativa coexist due to inflammation and his autoimmune disease also affects all of this.
Dustin started steroids, we will follow-up with cornea specialist and a Uveitis specialist in the next couple of weeks.
Please continue your great vibes, prayers and following his journey.

02/14/2023

Update..
Today we were given the best news to date! Dustin will no longer have appointments with the surgeons office unless we have a problem and he doesn't need wound clinic. He was given cheers and hugs from surgeon's office as we left, we are grateful for all their help and kindness, it's mutual that we will miss seeing each other.
As of right now his future is unknown with this disease, we hope that he is entering remission by how it's looking. If he stays healthy without any lesions he will transition back to Lincoln and school by the end of March.
Thank you all again for your positive vibes and many prayers, keep them coming. I will not update very often if there isn't issues. Thank you for always following his journey...

02/04/2023

Update..
Since I last updated Dustin has been to the surgeon twice, last Thursday they removed his stitches, he's had a little bit of bleeding, draining but the wound itself looks amazing and we won't be going to wound clinic.
He doesn't have anymore lesions/cysts at this time, the hope is the new medications given are helping keep the disease at bay🤞Other than what appears to be infected hair follicles or rash (unsure as of now) that isn't bothering him, he's doing well.
He will continue to be in Wahoo as long as we navigate pain control, medically since HS started he's endured 3 surgeries November 2020, December 2021, January of 2023, countless consultations, medications, several dietary changes (haven't helped) wound clinic that lasted all of last year with so many unanswered questions. The best and worst part is the feeling of helplessness when your watching your child suffer and it's been some brutal suffering, the honesty from every doctor we've seen that research needs to happen because alot of the disease is unknown but I'm grateful the physicians are honest with us about all of this.
Thank you all so much for the prayers, great vibes, texts, calls, gifts, meals, purchasing shirts and donating to the fundraiser, following this crazy journey with us and anything that has made life a little brighter over the last couple of years especially on the hardest days!!
I'm asking you to continue to pray and send your great vibes for healing and remission.

01/26/2023

Update..
Dustin's been hanging in there as best he can, the pain seems to be the biggest issue. Dustin's drain fell out late Saturday night it's been decided to leave it out and hopefully it continues to drain. There is some swelling under the skin where the drain was but we will just watch it for now.
His wound looks good so far, we will keep our fingers crossed that it heals quick. Thank you for your continued prayers, good vibes and following his journey!!

01/10/2023

Update 1/10
Dustin had surgery last Friday, he has a wound that is 4x6, two centimeters deep. Because the opposite armpit wound took over a year to heal the decision was made to do a few layers of stitches and insert a drain. The wound is not completely closed but we are hoping for a faster healing time...this time.
We were able to see a new dermatologist in Omaha yesterday (his internship was at Mayo clinic) I am always hoping for great answers, Dr. Sheehan was very impressed with Dustin's scarring and how his wound looked, he told us our surgeon (Dr. Fitzke) did a fantastic job one of the best he's seen especially with this disease.
Dr. Sheehan did not recommend Humira, humira and Hidradenities both come with other medical issues, long story short if surgery is controlling the disease maybe it would be best to continue this route. I had asked about remicaid infusions but Dr. Sheehan hasn't been able to get the drug covered by any insurance because it's not FDA approved to treat Hidradenities even though there studies that show it does.
In talking with Dustin yesterday we made the decision to stop getting referrals from other physicians at this time. That doesn't mean we won't in the future but for now we will focus on small victories and trying to treat some of this disease naturally, right now it's keeping his pain under control.
Thank you for all the great vibes and prayers they are much appreciated, always needed and for following his journey!!

12/23/2022

I know I haven't updated much about Dustin but he's basically doing the same routine we have for the last year.
When I look back to where this all started, he was a junior, I had a successful grooming life was good, in the blink of an eye our whole world changed. I don't think I'll ever forget what the surgeon said after the first surgery, I have some bad news, it's unfortunate and he was 100% correct, this disease has robbed Dustin of his entire world.
As we embark on a new year, we will continue to hold onto hope and our faith as we navigate another surgery, I will continue to fight until we find the best care with better results on this disease.
Dustin is scheduled for surgery January 6th this surgery will be in the right armpit but in a different place from the first surgery. I ask for your great vibes and prayers, thank you for continuing to follow his Journey.

12/06/2022

We were given some unfortunate news, We are not going to Mayo clinic as planned.
I am in the process of scheduling surgery and rescheduling appointments for him, as a parent watching a child suffer from pain and worrying about his quality of life especially when he can't do any of his hobbies has been unbelievably hard. We've lived in a constant state of surgeries,(3 for Hidradenities suppurativa in 25 mos) doctors, trying to heal an open wound for 12mos on Dec 9th, little answers and hours and hours of research and doing my best to keep his spirits up.
Thank you for following his journey, sending your good vibes and prayers!!

11/28/2022

I haven't updated because there's not much to update, Dustin's continued to see the surgeon, wound clinic, dermatologist, every other week or three. The wound has basically been the same, looks great just slow healing.
Because of pain and another sore that's causing issues he's spent alot of time at home missing school majority of this quarter,
We are scheduled to go to Mayo in December, Dustin is in need of another surgery and he's trying to hold out until then. (Pain is the biggest factor with this disease so holding out on surgery makes life tough with the pain)
Thank you to all those who check in on us, pray and send your great vibes!!

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