Save the date and Research Info

This is probably the last post I am going to make until after my surgery. There is so much going on this week with birthdays, a wedding, and watching my 4 year old grandson for a week that I just want to focus on that for a minute. I will post on my other blog  the good times this month.

I got the date yesterday for my hidradenitis surgery. I’ll be having wide area excision on May 31st at 11AM. The doctor’s office said that I will go home the same day if everything goes as planned. I worried about going home the same day because I read that most stay in the hospital an average of 5 days but, after talking to people in a couple HS groups I belong to, it’s not always the case. In fact, some agreed that it’s safer to heal at home right away because of all the germs. They told me the only reason people stay in the hospital is if they need to control bleeding, my pain is not under control, and my vitals are not where they should be. They really made me feel comfortable and told me that they will be there for me after surgery if I have questions or need help. I am glad I have the support.

I guess I am just a little scared because it’s finally happening and the reality is setting in. the surgeon made it sound like he was booked up for months. When they called me yesterday, the nurse wanted to set it up for May 10th! I can’t do that because my daughter is getting married the 11th and I have my grandson for a week while they are on honeymoon. The next date was May 31st, which is perfect because I also have a repeat upper GI May 30th to check on my ulcer, GERD, and stomach/esophagus inflammation.

The reality that set is was that I have just 4 weeks to prepare for my aftercare. I still need to get a bedside commode, disposable exam gloves, and whatever supplies I will need to change my dressings at home. I also have to figure out how to change everything with one hand! My husband said he would watch and learn from what the doctors and nurses tell us before we go home after surgery. I am so glad he will be there to help me! I know I wouldn’t be able to do this on my own.

I can’t wait to tell you all how it went and show the healing process. I know everyone heals different but, from what I was told yesterday, the worse pain is for the first week or two and then when nerves start regenerating. They made a good point: If I can handle the pain of this disease for 13 years, I can handle this for a few months. I have hope of some remission for a good, long while. I think I made a good choice.

My second point to this blog is to share a call I got. My dermatologist, digestive health clinic, and surgeon are all at a university hospital. I had put myself on a list for clinical trials a few months ago and got a call about one yesterday for hidradenitis studies. I posted the news on the two HS groups I belong to on Facebook and will share this post here:

They called me to tell me about this study for IFX-1. The purpose of this study is to determine whether IFX-1 is safe and effective in the treatment of moderate to severe hidradenitis suppurativa. I have a huge file I was given about it that is 18 pages long, but I am not sure if I would be allowed to share it. Around 175 people in approximately 50 study centers in approximately 8 countries will take part in this study. If you have not been on biologics in the last 24 months (longer in some studies), have 3 or more active stage 2-3 HS, you may qualify. I am having surgery to remove the 3 that would qualify me, but I can participate if they come back in 3 separate areas at stage 2-3 within the next 6 months. If the drug works, the FDA may approve it for HS treatment. I urge anyone who may want to help with a possible effective treatment for HS to search your area for this IFX-1 study. I found one here https://clinicaltrials.gov/ct2/show/NCT03487276  and my own area is doing one too. They will be starting in my area in a couple months. I pray I do not have stage 2-3 come back for a long time after surgery, but I thought this would be good to share. The link states exclusion and inclusion criteria. Please note that this is just a study. if it works, you would have to wait for FDA approval to stay on it from what I understand. When the trial study end, the treatment ends.

I urge anyone who may want to take part in this study to search your area for it. Wouldn’t it be nice to have a drug that actually works to keep us in remission? I am just so happy to see that more research is being done to help people like us. I hope someday they find the true cause of this disease and a cure.

I did ask if I could still qualify after surgery and was told this:

Hi Christina,

I can forward your question to Dr. Martin to answer. If after surgery you develop 3 nodules that are moderate to severe this would qualify you for the study. Since we haven’t started yet and once we do start, we will be enrolling for at least 6 months. You may still qualify for the study. I will discuss with Dr. Martin as well and will let you know her thoughts.

Thanks,
Dyann

 

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