CME Patient Panel Q&A's.

I was asked to be part of a Patient Panel at Cincinnati Children's Hospital Medical Center, where I had VSG surgery almost 2 years ago! It was part of a conference to teach people from around the world about weight loss surgery's affect on teens, and to get different perspectives on it (including patients who have gone through it).

I'll make a post talking all about that later, but I had a list of questions from the bariatric team that were basically a guideline of what we'd be asked there, and I thought I'd post the questions and answers here as well. (: We didn't get through all of them, because we added time for the people there learning to ask questions as well.. But they all kind of were the same things we would have gave information on, anyway. So here were basically all the questions that there were for the patients, and how I answered them (or how I would have answered them if I didn't freeze up.. I'm not much of a public speaker, haha.)

1.) Q- What were the triggers that provoked the thought of weight loss surgery?
A- I have a strong family history of obesity and the co-morbidies that go along with it.. I've been dealing with  Insulin Resistance literally since I was an infant.. I was always twice my size, showing signs of high insulin levels and what not.. Just, metabolic problems in adults, let alone children, weren't really relevant back in the 90's.. So I didn't get diagnosed until I was 5 or 6. Regardless, I knew what was happening to my body.. and after watching my grandma die of obesity complications,.. well.. I realized I didn't really want to go through that. I was desperate to find a way to get the weight off.. I was sick of being unhealthy, despite my parents, doctors, and my own attempts to get it off.

2.) Q- How did you hear about us?
A- Well, basically, the internet.. Haha. I was 15, and at a point where I was so frustrated with every diet and exercise regimine I had ever done not working, that I was looking for different 'cleanses' and diets and detox things to do.. I was at a point where I was starving myself, not eating more than a couple carrots or half of a banana a day and I only did that to take my medicines.. I knew my body was in 'starvation mode' but I didn't care, because I was so desperate to lose the weight.. -- I was on some website reading about some diet that I hadn't tried before, when I saw an add for weight loss surgery.. then I got curious. I started to think "Oh, i wonder if they would do that on someone my age?" and I spent some time researching it, then came across Cincinnati Children's program for teen WLS... I spent more time researching it, joined websites like www.obesityhelp.com and talked to people who had had different types of surguries, and eventually made up my mind.. at which point I brought it up to my parents, showed them what I had learned, and we made appointments with some doctors to try and get a referral for a consult.

3.) Q- Was it difficult to lose weight pre-surgery? What were the barriers?
A- Well for me, I've been going to doctors and dietitans and what not since I was a toddler.. Diet and Exercise weren't necessarily my problem at this point, it was more not having the medication portion in piece. Before I got things rolling for the consult and started seeing doctors again, something I had previously pretty much given up on, I hadn't realized how terrible my health had gotten.. I had never really lost weight.. I only managed to maintain for awhile, before gaining more.. No one really knew how to treat IR in kids when I was younger. So once I got the medication part in piece, I lost 35lbs almost immediatley right before my consult.. So weight loss without the medications kind of seemed to be impossible. And still to this day is.. I didn't lose weight whenever I wasn't on my medications, post-op. People didn't think I'd need them after surgery, but I did and still do, at least for the time being. So, yeah.. the barriers were not having my health conditions treated correctly. People questioned why I decided to have surgery, when I lost almost 40 pounds with the medication changes and my answer was always that I wanted somethign more permanent, because I had been in situations where medications didn't help either, and I wanted that tool there in place so I could use it regardless, it's not something that goes away.. It's always going to be there. There's no reversal.

4.) Q- Which surgery did you get, and why?
A- I had the Vertical Sleeve Gastrectomy. I chose the sleeve because I didn't like the idea of the band possibly eroding my esophagus/stomach and needing fills, or the idea of the bypass.. I didn't like the idea of having my stomach removed, but still inside of me.. not really having access to it, you know? It just seemed a little unsettling. -- Also, the sleeve had a shorter anesthesia time, which was definitely a plus.

5.) Q- How were the pre-op clinic appointments?
A- They were good! I got any questions I had answered, lots of testing was done to assure I had the best care possible, and that there weren't any surprises during/after surgery.. And the bariatric team was really good at working with my other doctors (Family Physician & Endocrinologist, specifically) to let them know what was going on, and to schedule testing closer to home since I live about an hour away from Cincinnati, etc.. It was a surprisingly easy and relatively short-lived experience for me, seeing as my insurance only required 3 months of pre-op clinic.

6.) Q- Did you feel better prepared for surgery after these appointments?
A- Well, yeah. I knew what was going to happen and I had met pretty much everyone taking part in it.. I was really well prepared, and totally at ease with my decision.

7.) Q- How was your in-patient experience of surgery and recovery?
A- Aside from me being an idiot and denying myself pain medication post-op for awhile because I didn't think I'd need it, it was pretty easy.. The worst pain was from the gas due to it being laprascopic.. My hospital stay was only 2.5-3 days, and it was really uneventful.. No complications really.. I was a little irritable when I was in pain when I was denying myself the medication, but other than that, that's really it. (:

8.) Q- tell us about your relationship with food.. How did it change pre and post-surgery?
A- My relationship with food is pretty much the same.. I had always been a relatively healthy eater, I was never fond of sugar because it was something I never really had because I was always on diets, I was relatively good with portion sizes up until the year before surgery because i was so frustrated that I was starving myself.. So if anything it's better simply because I'm eating more frequently so my body isn't starving,  regardless of if the quantity is smaller than most peoples.. It's more than I was eating pre-op, and less than I was eating when I was younger when I couldn't seem to lose the weight. So it's alright, I guess. Just more scheduled.

9.) Q- Tell us about food and socialization post-surgery. Did it change? How?
A- I didn't socialize much before surgery, and I still don't socialize much because most of my friends live pretty far away.. It requires driving to the opposite corner of the state to see them, HOWEVER, i have taken more road trips to see them in the past 2 years than I ever had pre-op.. I've also made more friends when I take those trips, than the 1 or 2 i had.. I don't really associate food with socialization. I know most people do, but I don't.. They honestly have nothing to do with each other for me.

10.) Q- What was the worst part of the surgery process?
A- Definitely the plateaus with the weight loss.. I have a lot of metabolic problems, and I started at a lower weight than most people do having surgery.. So my weight loss has been slower, and that's been extremely frustrating for me.. I don't lose weight without the medications I'm on, and it seems like I have to work harder than most to lose the weight, just like I always have when I was younger when I'd try to maintain. I always seem to compare myself to other patients i've kept in contact with, and how they're doing.. I wonder what I'm doing wrong and why they're losing more weight and at a faster pace than me.. When in reality, I'm probably still eating healthier and exercising more than half of the ones that I've spoken to.. My lifestyle is so much more healthy.. They're eating junk and still losing weight, just because it's less junk than they took in before.. where for me, my diet was fine pre-op as for what I was eating, so yet another factor against me losing weight.. My body never went into shock like most peoples do with surgery.. You know? -- So, I 100% understand why I lose weight slower than most patients, but that doesn't make it any less frustrating. Even now almost 2 years out it's still the number 1 reason why i'm ever upset or frustrated, haha.

11.) Q- What was the best part of surgery?
A- Well, obviously the weight loss is great, despite how slow it is. But I'd have to go with the people I've met.. If I had never found out that surgery was a possibility, I would have never fought to get a referral (which my family doctor wouldn't send) which lead me to the amazing endocrinologist that I have here, Dr. Nicholson. She's been a life saver when it comes to all of my metabolic problems, and figuring everything out and organizing all my medications and what not.. Also, the bariatric team, not just for surgery.. But the dietary aspect.. If I didn't have Kathy (the dietitian on board with CCHMC WLS program) to email when I get frustrated when I'm not able to get enough calories or protein or, or Linda (nurse practitioner) to have my mom call to ask about different things, I probably would have lost my mind by now.. Everyone has been so helpful in managing every aspect of my health, not just the stomach-being-removed portion.. That's definitely the best part for me. (:

12.) Q- Tell us about the health conditions that have changed post-surgery.
A- Pre-op I had Insulin Resistance that had crossed over to Type 2 Diabetes, PCOS, Hypothyroidism, Hypertension, and Sleep Apnea. Post-op I still have IR, but the Type 2 is gone.. The Hypertension is gone, and Sleep Apnea is gone. I still have IR, PCOS, and Hypothyroidism.. But it's much better controlled than it was pre-op.

13.) Q- Tell us about taste changes post-surgery?
A- There are some days I don't tolerate bread or pasta well, sometimes pork doesn't go over well either.. But it's not all the time. It just depends on the day.. Generally, I haven't had many food intolerances. Sugar doesn't go down well, obviously, but it never really did for me pre-op either, so that hasn't really changed.

14.) Q- How relationships were and are?
A- I had a lot of toxic friendships pre-op. Friends who treated me like crap, and ended up leaving me when I had surgery.. They either a) were jealous of me getting it or b) thought I was stupid for going through with it.. They didn't (and weren't willing to try to) understand my health problems or why it was a good choice for me.. But in the end, their opinions didn't matter to me.. I had been bullied my entire life for my weight, to the point where I left school temporarily in 7th grade to do home schooling because I couldn't handle the way everyone treated me (some teachers, included.) So I was at a point where I would take what I could get when it came to relationships, since I was so use to people treating me like crap. -- Post-op, those people left. I was in a position where I could go out more, even if it required trips to 3+ hours away to see my friends, it was worth it compared to having bad people around me.. I've made more friends, despite them living further away.. and I wouldn't trade those friendships for anything.

15.) Q- How do you keep yourself motivated to take multivitamin, and stick to diet and exercise?
A- Vitamins aren't a problem.. I have so many prescription medications that I take, I just have all my vitamins out by them and I'm pretty compliant with them. Sure, I miss a dose here or there, but it's not an every day thing. -- Diet really isn't much of a problem either, other than reminding myself to eat.. But exercise is more difficult. But I know I have to do it, to lose weight. and I want to get the weight off. Also, a big motivator for me is this blog. I use it to keep myself accountable.. I want to do well, so this blog does well, so people can see that despite whatever challenges they face that there is always a way to get what you want done accomplished. I know what I have to do, and I do it.. That's really all there is.

16.) Q- Do you think post-surgery follow up appointments are important and why?
A- Yeah I do, because the support system is really important. Also getting blood work done and what not to make sure you're still healthy and to adjust medications that need adjusted. It's just important to your overall health, physically and mentally, to have that support there.

17.) Q- What are the reactions of friends and family about your surgery decision and outcome?
A- Like I mentioned before, most of my friends didn't agree with it.. However my one friend that I go to concerts and road trip a lot with, was really accepting. Her mom had also had weight loss surgery, so she kind of understood it despite it being a different surgery, and there were no problems. -- Most of my extended family was 100% opposed to it, saying that my parents were stupid for allowing me to go through with it and allowing me to 'manipulate' them. However, now that they see there were no complications and that I"m healthier and that I have lost weight, they try to act like they've supported me the entire time... I have to bite my tongue a lot when I'm around them, haha. But I deal with it, I guess. My immediate family though was pretty supportive. My dad was kind of apathetic, my mom was all for it, my little brothers didn't mind it, and that's all that really mattered to me.

18.) Q- Energy level and sleep pattern.. how are they different pre and post-surgery?
A- My energy level is much higher, and I sleep better. I'm still slightly nocturnal, but I'm on a much more normal schedule than I was pre-op, and the fact that the sleep apnea is gone really helps as well. (:

19.) Q- How was your support group experience?
A- I haven't been to many support groups.. Actually I've only been to one, and it was good! But I can never make majority of them because I live a little over an hour away, and I typically don't have a ride. (I don't have a car, so driving myself isn't an option.) However, I spend a lot of time on the Facebook support group page that the team has created for everyone.. I think it's a really great thing to go along with the program, because you can almost guarantee that at any given time there will be at least one person online and willing to talk if you have any questions or need support (I'm usually one of those people.. I have a bit of an internet addiction. shh. :P) Sometimes people feel more comfortable talking to people online through text rather than in person verbally, because you have more time to really form your thoughts into what you want to say/ask.. It's just a really good platform for that. -- I've been told by different members of the bariatric team that people have used my name, saying that I've helped them through the support group page, or that they've taken my advise on things, and I don't know.. I have absolutely no idea who these people are, but I'm really glad I was able to help them with whatever we had talked about, and hearing that I was able to help someone online even though I can't make the support groups is a really great feeling.


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So yeah, those were all the questions that we were prepared with.. There were a few that people asked that I don't particularly remember, so when/if I do I'll add those to this list as well. (:

I hope everyone has a great day, and a post all about the experience of being on the panel will be coming soon!

Bye <3

-Ashley (:

The hospital I had my surgery at is one of the best in the country.

http://www.huffingtonpost.com/2012/06/07/best-childrens-hospitals-_n_1572092.html?ncid=webmail24#s=more230729

Just found this... I had my VSG at Cincinnati Children's Hospital Medical Center, here in Ohio.. It's about an hour away from me. I guess it's number 3 on the list of top 12 children's hospitals in the country? That's kind of awesome.

Just thought I'd share. (:

-Ashley

The hospital (and surgery) is my 'Sanctuary'.

A friend of mine I met through a mutual love for a band, is making a book to give them at a show later this month.. Based off of this song.  http://www.youtube.com/watch?v=KdKu_J5ebMg Listen to it.. Honestly. It’s amazing. <3

But anyways.. The idea is send a picture in of yourself with what you consider to be, or in what place you consider to be your “sanctuary”.. & Write a few words about it.  I sent in a picture of me (That is currently my banner) of me in the hospital bed, in the recovery room after surgery… http://i50.tinypic.com/2mwe1vo.jpg --and I wrote this along with it..

“The hospital... I go there pretty often... I don't mind, because, well, put simply.. The doctors there saved my life. Without surgery.. I wouldn't be able to enjoy concerts or photography or anything else I do enjoy. Every time I go there I'm reminded of how much stronger I am now than I was before. & How much better my life is. so yeah... The hospital is definatley my Sanctuary." <3

It’s the truth…  That song has helped me get through a lot. Hell. That whole band has and they have absolutely no clue. – But without this surgery.. I wouldn’t be in a good place like I am now. I wouldn't be off of my antidepressants. I wouldn’t be applying to college or looking for a job. I wouldn’t be going to a huge music festivle/tour in July. I wouldn’t be able to last all day on my feet, like I can now! It’s just.. amazing. I am getting sick of going to the hospital so much.. But every time I do It’s just an amazing reminder of how far I’ve come.. How much healthier I am.. and How grateful I should be that I’m doing so well and just.. It’s fantastic. It’s reassuring, aswell.. To know people care and are trying to help me STAY healthy. And I can’t imagine it any other way. I can't thank the people that have helped me along on this journey enough. My doctors, the people I've met on ObesityHelp, The other teenagers i've met that had the same surgery (or wls in general..) or are planning to.. anyone who has encouraged this blog.. everything.

It's amazing... I remember the second I got accepted for a consultation.. For WLS... That day was the last time I ever cut myself... I remember the day of the consultation I had so much makeup over the cuts.. Just to make sure no one would see them... Because I needed this surgery. If i didn't seem completely stable.. I didn't think I'd be able to get it. -- I had finally found a glimmer of hope.. a silver lining, I guess. A few months later I was off of anti depressants.. i still have some anxiety every now and then but.. It's controlled.. I'm able to control it now..  I've ahd a few off days.. especially when i was frustrated feeling like the surgery was for nothing but... as of 5-15-2012  at 16 years old, I'm 195 lbs. I havent been 195lbs since I was 13... It's just unreal.  I still have family issues.. but they dont bother me as much as they used to, because I'm not stuck at home all the time... and They're not my main focus. my main focus now is getting healthy.  nothing else bothers me or is as important to me, as that  is, right now.

I've never been more thankful for anything in my life. I don't think I ever will be because, well, the VSG gave me my life back... A life i don't think I ever had.. Absolutely everything doesn't revolve around my weight gains anymore.. Because i havent gaiend any weight in a year and a half.. It's just.. one of those things. It's surreal.

People who havent experienced it can't really understand.. So people think i'm crazy and that I have an anorexic way of thinking.. Because I'm so weight obsessed.. But that's all I know. My entire life has revolved around my weight.. And It's amazing to be able to focus on other things for once.. I'm re-learning how to live a normal life.. Although anxiety provoking, and frustrating, and depressing sometimes.. It's amazing I get to now. I got the gift at a young enough age.. I dont' have to live the rest of my life the way I lived the first 15 years. I don't have to live in fear or the unkonwn about my diseases and I now know that seriously.. If you really want to do something.. You'll do it. You'll find a way. There is ALWAYS  a way. No matter what it is. Now that doesn't mean it will come quickly. or easily. But theres always a way for whatever you want to happen, to happen.

Shoot for the moon. Even if you miss, you'll still land among the stars.

Have a great day. <3

-Ashley(:

What to bring to the hospital..!!

Here are my blogs about the day of surgery, and the hospital stay (3 days total.. including day I had surgery) if anyone is interested. (:

http://ourfightnow.blogspot.com/2011/08/surgery-day.html

http://ourfightnow.blogspot.com/2011/09/hospital-stay.html

Now, on to the post....

When I went, i didn't pack obsessively or anything the day before.. I used (almost) everything I brought. and didn't really need anything that wasn't provided. So to put your mind at ease, here's a list of what the hospital had already provided for me.. (check with whatever hospital you're having surgery at.. because it may be different there..!)

• Toothbrush.
• Toothpaste.
• Blankets.
• Pillows.
• Soap.
• Towels to shower with if needed (I didn't until I got home..)
• Aquaphor (a vaseline type product.. it was a freaking life saver.. my lips got so dry. It definatley helped. a ton.)
• Drinks (you can't really eat in the hospital.. lol.)
• Medications (if needed.. i was swallowing pills while still in the hospital. But I didn't bring any of mine with me.. They had them on file and brought them to me from the pharmacy or whatever, there.
• Internet access.
• They gave me a word-search book to do pre-op while i was waiting.. i still have it.. haha.
• And a gown. they also had socks with grips on the bottom, and like.. sleep pants available. I spent most of my time in a gown, and sleep shorts that i brought from home, though.

So I didn't bring any of that (other than one towel to wash my face with that i never ended up using.) But what I did bring was..:

• The clothes I was wearing at the time.. (Grey cotton Shorts, bra/underwear, tank top, and a cardigan, and flip flops.)
• My laptop & Charger.
• My Ipod & Charger.
• My cell phone & charger.
• a notebook and pen (and a few sharpies.. i love drawing with them.. no clue why.)
• my meter to test my blood sugar.
• some hair elastics/ties and a headband.
• a retainer for my nose piercing (a plastic clear thing you put through it.. they have them for every piercing possible.. i didn't want to risk mine closing up during surgery and my anesthesiologist allowed me to keep the plastic retainer in..
• My nose stud.. to put back in when i woke up..
• Insurance cards and stuff like that.
• chapstick
• deoderant
• face wash (acne wash..)
• perfume/body spray/mist stuff.
• hair brush.
• eyeliner and mascara.
• differin (Rx acne medication)
• wallet
• a pair of pajama shorts, change of underwear, and 2 tank tops.
• (I bought a hospital t-shirt while i was there.. more of a reminder type thing. but i ended up wearing it on the way home.)
• and headphones.

I'm pretty sure I used all of it except one of the tanktops that i brought.. (It was the mid-end of August.. it was pretty hot.. and I was actually sunburnt at the time too.. They were the only thing that made sense untill i was freezing my ass off in the hospital.. haha.)

Oh. and I did manage to fit all of that into one black backpack that I used to use for school. I think my mom brought more than me in more bags.. and she was only there half the time I was.. (Thankfully.. she honestly REALLY got on my nerves.. She's a nurse.. trying to play nurse/doctor lady on me.. I was a bitch to her when I was drugged up.. It was crazy.)

So yeah.. Maybe those lists helped you figure out what you need to bring to the hospital to have surgery.. Keep in mind it all also depends on how long you're staying.. I stayed a total of 3 days.. I went in around 5am friday. went into surgery around 7:45am friday. then I left about 1pm on Sunday. Some people stay longer, others stay less.. (although all the nurses and doctors seemed surprized i was ready to leave on the 3rd day.. They were planning on me staying one more day at least.)

Alrighty then. I think that's about it. Have a great day. (:

-Ashley
ashleyellen1637@aol.com
www.twitter.com/ashleyohara_ (don't forget the underscore.. for some reason it wont let me add it into the url)
www.facebook.com/justashley1637

<3