Skip to main content

Amazing, Terrific,Yet Disbelieving News!

The NEWS!


I had another appointment today at 9:30. I came back last night on the train to go to it. I've been really looking forward to this day for a while. I've had a lot of setbacks with surgeries and procedures in the past. So I was really nervous that my Surgen. Doc C. would push the stomach tube removal surgery back a few weeks. My plan was to get it out first week of July. I've had the stomach tube in since 1997 (Read all about my Stomach Journey Here). Needless to say, I was super excited to talk to the surgeon about getting it out. I know some patients in the past just had them taken out and their holes closed up quickly on their own. However, this thought freaked me out whenever it entered my mind. I've had my g-tube in for 15 years, so sewing it shut will be my only option right?

Wrong... Cuz guess what happened today??? My surgeon took out my G-tube...

Here is me right afterwards in the car. Don't worry I didn't post a picture of the actual hole once the tube was taken out. However, if you would like to see it (If you are getting one out and are nervous), just
comment below and I can email you it.

But, here is the rather funny story about how it came out.... I had only planned on scheduling a surgery for its removal today and had no idea he'd take it out. I got in there and told him Doc B gave me permission to have it out. I asked him how he'd remove it. And he said well let's see here. It's a peg right? So.. (and he started putting on gloves and got a syringe...)

 I was like " whoa, are you taking it out? Now? Don't I need to have a small surgery to get it sewn up. I mean it's been in there for 15 years."

He then explained to me that really the stomach would collapse in around the hole (in the actual stomach) and close very fast. That if they used stitches I'd have a greater risk of infection. That this way I'd have no restrictions, I can eat and drink whatever, shower, etc. No problems. He said the outside skin would take a little longer to heal (up to a couple weeks). I had to keep gauze over it and clean it frequently. But, otherwise, I'd be fine and it will heal nicely.

I told him about my fear about the scar ending up dipping inward (like a permanent poke mark on my stomach). I want it to be flat. He said I should be pleased with the way it heals, but if I'm not let him know and he can reccommend me to a plastic surgeon to make it look the way I want. So that's nice to know, it can be fixed up a little if I'm unhappy.

Overall, I'm a little concerned, but since it came out at 10am this morning, it hasn't been leaking or anything. And I think its shrunk a little already, I guess it has been fine. I've been off and on a little nauseous and a little sore. But my tube was raw around it by the time I got it taken out. So that might be why. I'm not that scared about it healing, because I trust Surgeon C.

My only worries are that now that it is gone, my safety net is gone. If I drop in weight, a night feeding can't be done to pump my calories up. Which means working a lot harder on my part with eating and keeping up with my energy level. But I'm ready for this new challenge and privilege I have be given. I need to focus on how amazing it is to hug someone and not worry about my tube snagging. I gave Andrew a BIG HUG I can't wait for it HEAL!!!!!!!

Also side note: Princeton Walk is on Saturday, June 28th We have 110 walkers and have a goal of raising $10,000 (Read about the Walk here)

Next Monday I have my next clinic and I get screened for my next Clinical trial too! I'll keep you posted on how my weight is there and how the healing is going! And I hope to see everyone Saturday at the walk! :-)

Comments

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

Planning ahead (yay, for being organized).

Organization: it is a great thing! I'm doing another CF Walk in October! It's on the 6th at 9am. Why am I posting this now? In the past I wasn't organized. I would end up asking a couple friends to walk it with me. I didn't fundraise much, but I want that to change! I've had people tell me they would have walked if they knew about it. I'm blogging now, being more active on CF communities online, and there is no reason why I shouldn't invite others to do the walk. Everyone knows I have CF, why did I never invite more people?? No clue. So here I am inviting everyone to come and walk with my team! Here is the link the Facebook Event: Cheriz's CF walk FB event Also a link directly to my GreatStrides Walk page is on the upper lefthand side of the blog! I want to start to be more active in fundraising walks (along with 5ks). I'm planning on doing 2-3 CF walks a yr, and the ALS/PLS Walk every year! If you want to cheer me on at my first 5k i...

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...