Hoops and Hurdles (Fistual Plug)

As many of you know I have a gastric leak and a fistula that I have had for nearly a year. Initally the thought and hope was that it would heal on its own, but that didn't happen. I had several visits to the hospital because of it climaxing in April when food and liquids would come directly out of the hole in my stomach. I was like a circus freak!  A catheter was inserted in my chest and I was put on TPN (IV nutrition) and told that I had to be NPO. Again, the thought was that if I got my nutritional levels up (albumin/pre albumin) that my body would heal the leak and the track. Four months later, my albumin level has never been above 3.6 despite being given 150 grams of protein a day. Recently, my level dropped to 3.2 and have started to recover, but as of Monday it was just 3.4.  Please note, that this is fully absorbed protein and STILL I can't get my levels up past 3.6.  So in June Dr. Greenbaum referred me to Dr. Matt Kirkland at Pennsylvania hospital. He is a gastro surgeon. He suggested fibrin gluing and referred me to an Interventional Radiology doctor who said no to the gluing that it would not work for me because my fistula tract was too mature, meaning, I have had it too long and that the gluing would likely not work. He recommended a fistula plug which would act as a scaffold for my body to build cells on and eventually close the leak in my stomach as well as the fistula tract. However, for the hospital it is a new techonology and thus many hoops and hurdles had to be jumped through and over.

First I had to be approved by the fistula plug company. Why? Well it seems that the plug is rarely ever used for a gastic leak (though in some other hospitals it has been) and so there is scant if any information out there on if it will work or not. Mostly I found it's used on anal and vaginal fistulas and the success is varied due to the high pressures in those areas. I suspect that my issue is somewhat of an annomoly and if it works for me it might work for others. I can't get anyone to confirm or deny that I'm a guinnea pig. Anyway, the approval by the fistula company came through, but it took three plus weeks from when I met with the IR doctor.

Then I had to be approved by the hospitals New Product Review committee. This took another 2.5 weeks from when I was approved by the fistula plug company. Approved contingent on Insurance paying for it and would be taken on a case by case basis. 

Lastly I had to be approved by the insurance company. I spent a lot of time on the phone herding everyone on the same page. This took an additional two weeks because the predetermination did not include costs and of course the insurance company wants to know how much they are going to have to pay.  Well today I sailed through the last hoop and was told that the procedure was approved.   

Now I hurry up and wait. The plug has to be ordered, this will take a couple of days and then a couple or more days for the plug to come in. Then I have to wait to get an appt. in the radiology department, but I'm coming up to the end of the race. I'm SO close to getting this thing done and to getting off of TPN.

If you are keeping count it's been about 10 weeks since I had my inital appointment with the gastro doctor and 8 weeks since I had the fistulagram with the interventional radiology doctor.

In total I have been on TPN for 3 months and 3 weeks, but for sake of ease and by the time I get the damn plug it will be well over 4 months.

I'm cautious at this point. I know that after the plug is put in I will be NPO for another week, then can start clear liquids, and continue to move on from there. Once it is determined that my body isn't going to reject the plug I can get the catheter removed.  As for healing it potentially will take three or more months for my body to build enough cells to close the tract and the leak. If it doesn't close I will have exhausted my chances of staying out of surgery and will need to have another open abdominal surgery to fix and close the leak.

I'll keep ya'all posted on when I go to get this damned thing put in. I wish I could do it tomorrow.

I really hope they make this work, you deserve it!

All I can say is OH MY! (As I was previously laying here in bed feeling sorry for myslef!) I am so sorry you are having to go through all of this. I had a fistulagram on Monday and they removed my drainage tube. Beginning yesterday, I am having some pain below there and it seems to move - has me very worried! My doctor has the same philosophy as yours apparently that he wants to give things a chance to heal on their own. I have been so worried since yesterday that I don't want to move! I called my doc this morning and he is working me in between surgeries tomorrow. This isn't just due to the pain, but also a wound I have that is causing complications.

I want to wish you the best as this stuff is no laughing matter. I hope and pray all will go well for you.
Terri-Lynne

I wish you the very best.  You have been through the ringer and it is your turn to start living life fully again.  Please keep us posted on your progress.  Warm wishes.

It sounds like there is finally a light at the end of the tunnel. Still swingin' critters for you.

Molly

You are a real HOOP star!! Let's hope this works for you.

I'll keep my fingers crossed that this will soon be behind you, Maddie!  Swinging critters!
Lisa

Bad things happen to such good people! I hate that you have had to go through this. I am wishing you a successful and quick recovery and that there are no long term repercussions. In the meantime, here's a hug.

 All I can say is "holy smokes woman!"  What a long journey this has been.  I am hoping upon hope that this is the answer for you!

((((Hugs))))  Enough is Enough.  I am so glad you are starting to see the light at the end of the tunnel.  I will swing everything I can get my hands on for you to get this done soon and heal fast. 

I hurt for you Maddie. 

Love Carla.