Obese air passenger in economy seat has picture taken – Telegraph

Obese air passenger in economy seat has picture taken – Telegraph.

This could have been me 8 years ago.  We traveled to Ohio from Oregon to spend he holidays with family.  I weighed 365 pounds at 5′2″ tall, and was wheelchair bound.  It was the trip from hell.  I was treated rudely – okay – more than rudely – hatefully is a better descriptor – by many that trip.  It was awful.

It just breaks my heart to see this guy – you know he’s in pain.  You know he’s miserable.  You know he’s humiliated.  You know that people have said horrible things to him.  You – like me – might know well the dilemma of being a super morbidly obese person with the need to travel a great distance – and air travel is your best option.

Is there an answer?

Obviously – I love the answer I found.  My DS is nothing short of a gift straight from the hand of the Lord God Almighty.

Is it for everyone?  Maybe not.

I started reading the commets on this article and could only go so far – it just was too painful.  PEOPLE CAN BE SO MEAN!  People who have no clue about what it means walking a FOOT much less a mile in our shoes have NO CLUE whatsoever about what is involved here.

Sigh.

So what do you think?

Any answers?

Insight?

Comments?

While I wasn’t eating…

Never in my wildest dreams did I imagine that going 9 weeks without taking sustenance orally would be a part of my life. Now that I’m officially sipping – as of Friday:

It seems – well – kinda like it was no big deal. IT WAS A BIG DEAL WHEN I WAS IN THE MIDDLE OF IT! Isn’t it funny how quickly our perspective of things changes?

During my season of not eating/drinking some interesting things developed:

1. I had an overwhelming urge to cook and bake. And so I did. A lot. And I’m still enjoying it.

    

2. I started thinking that chicken – which I’ve had a huge aversion/allergy to since my son was born nearly 13 years ago – smelled good. So much so, that I actually took a bite of some to test it out. Yeah, not so much. But at least it doesn’t make me want to hurl quite so much when it’s cooking now.

    

3. I took my first sips of Iced Green Tea on Friday and thought, “Hmmm… not so yummy.”

    

4. I took some sips of iced water – which I’ve pretty much hated since my DS 7.5 years ago – and thought, “Hmmm… YUMMY!”

    

5. I found that I REALLY like being home more.

    

6. I learned that I wasn’t as much of a wuss as I once thought I was. Dealing with the PICC, hooking up infusions, flushing lines – all of it, no big deal. I can’t believe what a baby I was when Dr. Zelko first told me he thought I should get one.

    

7. I met some really amazing people along the way – the home health nurses are at the top of the list of truly wonderful, compassionate people.

    

It’s been a really interesting season of life. I’d never have scheduled it into my life plan, of course, but I’m grateful for the good things that have come about because of it.

They started tapering me off of the TPN on Saturday. They did half volume Saturday night. And then Sunday night half volume again, over just 8 hours (rather than the customary 16 hours). Then Monday morning (yesterday) was the last time I had to unhook from TPN. Happy day!

I do still have my PICC line. I just got off of the phone with Dr. Zelko – and I have official permission to eat whatever I want. Although he told me he wants me to fire up the protein first engine – my albumin level is pretty sucky right now. Pretty much, eating is going beautifully. No pain, no upper left quadrant pain, no fever. Just normal stuff. Normal is good.

Dr. Zelko sent me for another iron infusion yesterday, too – I finally got to meet Dr. Ye, the hematologist at Pacific Oncology who totally gets it about malabsorption and iron labs. Because I hadn’t had a reaction to the iron the last two infusions I had, we decided to give the infusion yesterday a go without a Benadryl pre-treat. Yeah – well, it was a nice thought. I did have a reaction pretty immediately – shortness of breath, vomiting, spike in B/P and pulse. They got Benadryl on board in quick order and then everything was fine, and they went forward with the infusion. I slept through the afternoon, pretty much. And I feel fine today.

I will say that going to an oncology center for iron infusions should be required – it really helps give one a sense of perspective on just how blessed one is! I do have a comment to make though – the nurses there were SO impressed with my PICC line. The poor chemo patients they try so hard to get a line for – and then once all of their veins are blown, they give them a central line. WHY THE HECK DON’T THEY JUST GIVE THEM A PICC LINE? HELLO?! SO MUCH EASIER! I know – it’s a bigger deal for placement, but dang – so much easier once it’s all over and done with.

Of note… The past many months – gosh, I don’t know how long – maybe since I first got sick in April – I have not slept through the night. The past 9 weeks, and the weeks prior when I was hospitalized (cause they don’t believe in letting you sleep through the night in the hospital!) – it was pretty routine for me to be up at least every 1.5 hours during the night. When you’re on TPN and your fluid load starts at 9pm – well, nature takes its course and you gotta pee – a LOT – during the night! Last night – my first night off of TPN – I actually slept through the whole night. It was wonderful! I’m looking forward to many more nights of the exact kinda stuff! J

So… I’m easing back into life quite a bit healthier than I’ve been in quite a while. I like that. I like it a lot.

Pictures – finally!

A year ago…

Me, Ann, and MJ – on the beach in Benidorm, Spain.

Today…

Ann a year ago…

Ann today…

And me a year ago…

And today…

Okie dokie – that’s it!

What a Year!

Tuesday of this week I celebrated an anniversary. It’s been a year since I had the revision to my DS.

WOW!

What a year!

A year ago I returned to Spain to Dr. Baltasar to have him re-sleeve my stomach. I’d also kind of hoped he’d shorten my common channel – but that was not to be. Honestly, today – a year later – I’m glad he didn’t.

Here I was – 5′2″ tall, 193 lbs (okay 192.78 lbs) and a BMI of 35.3.

Okay – not bad, when you consider I started here:

5′2″ at 365 lbs and a BMI of 66. (July 6, 2002 – 4 days post-op.)

I wondered – with just a re-sleeve – if I’d lose enough to satisfy my orthopedic surgeons requirements for me to go forward with the ankle reconstruction surgery. Not only was he satisfied – he was thrilled with my results. Enough so, that I was in surgery March 4^th of this year for the ankle reconstruction. He ended up removing some necrotic bone, using donor bone to fill it; replacing all of the ligaments around my ankle with donor ligaments, adding a donor tendon across my ankle for stability, cleaning up a bunch of arthritis, severing the muscles in the back of my calf, so that he could reconfigure my foot and ankle. It was a big surgery. And I had to spend 6 weeks like this:

Man – I did a lot of knitting this year! I still am!

After my six weeks of non-weightbearing and toes above the nose, I was released to mobility – at first with a walker, then a cane, and a walking cast. The first six weeks I wasn’t allowed to use any ibuprofen, because it can actually cause your body to reject the donor material. Didn’t want that! But when I became mobile, and my pain escalated – and because I hate narcotics and the way they make me feel – I asked if I could take ibuprofen. They said I could.

And so I did.

I buy the 600 mg tablets of ibuprofen in Spain when I’m there. They’re awesome. I’ve been taking them for years. I don’t take them every day or anything, normally, anyway. If I’m having a particularly difficult time with pain orthopedically, then yeah, for a few days I might take it fairly regularly.

I wasn’t prepared for the pain that came with mobility. So I took 600 mg ibuprofen for pain. It didn’t cut it. So next, I tried taking 1200 mg of ibuprofen for pain. It didn’t always cut it, either, so then I tried 1800 mg of ibuprofen at a time for my pain. THAT worked. So I would take somewhere in the neighborhood of 1200 to 1800 mg of ibuprofen – oh, every 4 to 6 hours.

On April 24^th, 2009 I got sick. It was not like anything I’d ever experienced before in my life. I had an upper left quadrant pain and tenderness, fever, and this overwhelming urge to go to bed and just sleep. I was peeing a lot, so I wondered if it might be a bladder infection – I really haven’t had them in the past, so I wasn’t sure. I ended up going home and crashing – and feeling worse by the minute.

Long story short, I ended up getting some antibiotics and feeling better for a while… Thus began the long drawn out saga known as “As the stomach turns…” In short, all of that ibuprofen use essentially burned two holes and caused two fistulas to form in my stomach. Ingested contents were passing from my stomach into my abdominal cavity and causing an abscess, and I would get sick. Then I’d get antibiotics and get better for a little while, and then I’d get sick again. I mean here it is November and I’m still not recipient of the magical “All BETTER!” seal of approval quite yet.

July 2009 Baltasar BBQ at the McBride’s House. John – 5 years post-op. Me – 7 years post-op. Isn’t my husband handsome?!

I was actually pretty sick in this picture. This was not that long before my second hospitalization with this whole stupid ibuprofen-induced illness. Gosh I look tall in that picture! I should always find an old stump to stand on in pictures!

I really look tall next to Michelle! She’s so tiny and petite, though!

Weight loss wise – in terms of the whole revision – I think I was probably about 145 pounds in July.

That was the point in time when I started having a really hard time eating – it would literally hurt to eat – in large part due to the fact that stuff was going through my stomach into my abdominal cavity! So I was not eating a whole lot. Then I went in the hospital and was NPO (nothing by mouth) a lot of the time for diagnostics and procedures.

I know that by late August and early September I weighed about 140.

(Nothing like a really flattering hospital picture to make your day!)

Somewhere in the course of September to now I’ve settled at the weight of 130 pounds.

I think I was in the third grade the last time I weighed 130 pounds.

So – let’s see… I’m 5′2″ tall, I weigh 130 lbs, so that means my BMI is 23.8.

Dang.

I’ve never been a normal weight BMI in my adult life.

To be honest, I’m still trying to get my head around it. It’s really new emotional territory.

My size 10 petite jeans are getting a little too roomy. I have to hike them up quite a lot.

And yet – I still have days when I feel fat! When I was a pre-op, I always swore I’d never say that – I mean – HELLO – I’ve been fat! 130 pounds is NOT fat! I know that in my head. But somewhere in that ethereal zone between logic and emotion and hormones I have days when I feel – no other way to say it – fat. Yes, of course, not as fat as I used to be. It messes with the head – I won’t kid you.

So – would I do the revision again?

Heck yeah!

Would I take the boatload of ibuprofen again? YOU HAVE TO ASK?!

I always harp on people to make sure they take milestone photos – and guess what – I don’t have any! So I tell you what – I’ll work on getting some taken and posted. Okay? People tell me I look a heck of a lot better than I did a few months ago, now that I’m not nutritionally compromised any longer! All I gotta do is find someone standing still long enough to oblige me by pushing the button on the camera! That can be a challenge at our house! J

So – that’s my year as a revision post-op in a nutshell – for the most part.

I continue to be blown away at God’s faithfulness to me – providing what I need, protecting my life, guiding my steps. I couldn’t reflect on this year without saying: Lord God – I love you – I thank you for your kindness to me – even when I deserve nothing! Your mercies are more than I can fathom!

Okay – pictures soon!

Today’s the Day

I have a date with Dr. Kirsten Dunst (Dr. Swanstrom’s partner) to have the stent in my stomach removed. I have to be at the hospital at 3:00 pm. They made sure to tell me that I needed to fast for 8 hours before the procedure. I laughed and said, “Um… I’ve been NPO for 6 and a half weeks.” To which they said, “Oh… what a bummer!”

It’s an outpatient procedure. The speculation is that I will be discharged by about 6pm, and then on my way home.

My question is if they will be able to get me awake enough to get to that point! The last few times when I’ve had anesthesia there was not a whole lot of success in that department!

We’ll see.

In other – but related – news. I’m trying not to have a freak out. I’m not sure it’s working.

I think I may have mentioned previously that the last week that I was in the hospital this last time there was a new resident who showed up – never introduced himself, and did very little interacting with me. I wasn’t so impressed with him. I still don’t know his name – that bugs me. He filled out some of my discharge papers and wrote on them that my condition was a complication from my “gastric bypass” – SEVEN YEARS AGO.

HELLO.

I DON’T THINK SO!

Dr. Swanstrom, Dr. Zelko, and Dr. Halpin all agreed that my condition was due to damage caused by excessive ibuprofen use – secondary to my ankle reconstruction in March.

So – guess what’s happened. Yep. My insurance company is presenting ME with a bill for my 3 week hospitalization – that got billed as $90,041.80 – that’s without any of the procedures that were done – which have now also been denied.

So – now I find myself needing to fight and appeal all of this – which will eventually add up to well over $100,000 worth of treatment.

This is scary.

We are so broke to start with – I’ve been trying to figure out how I can make some money somehow just because we are barely making it with day to day needs! Now this! I’ve been doing a lot of crying out to God for help and advocacy.

And to be honest – not being 100% all better yet – it just feels so insurmountable. I kind of don’t know what step to take first or next or whatever!

I’ve decided to try and not focus on it today, though – I’m going to get this stent removal done and over with, get recovered from that, and THEN formulate a plan and go to work on that… praying desperately all the way!

What?!

As previously mentioned, I had an Upper GI on Wednesday.

It looked good. Really good. Especially when you compare it to where I started!

Yesterday was the last day of my six weeks of being NPO and on TPN.

I was trying not to hold my breath, but I was anxiously anticipating that first sip of iced tea, and first bite of real food! HMMMM…. J

I was just waiting to hear from Dr. Zelko on his interpretation of the films. Knowing him, he probably also rounded up Dr. Swanstrom and Dr. Halpin, as well as the original radiologist who has seen all of my films to get their opinion, as well.

There was a sliver of a chance that he’d call Wednesday afternoon. I hoped – but wasn’t holding my breath. So I wasn’t all that surprised that he didn’t call then.

Thursday morning I got a call from Brittany, the wonder MA, saying that Dr. Zelko would be in the office at 2pm that afternoon – after being in surgery all day long, and likely returning to the OR after that appointment. She would try and steer him to review my films and have him call me before the day was out. Hmmm… sorta thought he might call. But – he’s the kinda guy who doesn’t just do stuff on the fly, you know? So, yeah, wasn’t completely surprised that he didn’t call on Thursday, either.

I really expected him to call on Friday. I knew he’d be in Clinic all day long on Friday – so I planned my day so that I had both the house phone and my cell phone within arms’ reach the whole day. I decided to do NOTHING that would cause me to potentially miss that call!

So I waited…

I’d get phone calls, emails, and text messages from people asking – had I heard yet?

No. Not yet.

Noon came and went.

I did the dishes – with the phones within arms’ reach.

Two o’clock came and went.

I did a couple of loads of laundry.

Three o’clock came and went.

I vacuumed the front room.

Four o’clock came – and I started getting nervous. Dr. Zelko’s office closes at 4:30pm. Should I call him? I don’t want to be a stalker patient… but… Of course, I reminded myself, it’s not like he is a huge respecter of office hours when returning calls. He’s been known to call me as late as 8pm in the evening, and on a Sunday afternoon. I knew he’d call when he could and when he’d had enough time to do the research he’d deem appropriate before giving me a plan of action. But still, I couldn’t help but feel a bit anxious and think – yes, in capital letters – PLEASE CALL ME DR. ZELKO!!!

It was 4:26pm – I was sitting in the front room, a handful of Jessica’s camp pals were arriving – John was going to be transporting them to an event an hour’s drive away – and my cell phone rang. DANG IT! I didn’t have my phone within arms’ reach!!! John grabbed it – handed it to me – and the call DROPPED! It was HIS number, darn it!

I sat there – stared at my phone and yelled, “Call me back!!!”

Two minutes later – while I was having a panic attack, wondering if *I* should call back, I got notification of a voice mail. A VOICE MAIL?! But I wanted to TALK to him!

I, of course, played the voice mail. It was Brittany, and she said:

Hey Dina, it’s Brittany calling. Dr. Zelko wanted me to tell you that he did get a chance to look at that Upper GI. Everything is looking great; you are on the road to being healed in regards to that fistula. He would like to repeat the Upper GI in three weeks. His anticipation is that at that point hopefully everything will be healed and then we can begin starting you back on food. He did say it’s time to get that stent out – so we’ll be scheduling that. I’ll also schedule that Upper GI and get back to you about that. Call if you have any questions or concerns.

WHAT?!

THREE MORE WEEKS?!

WAAAAAAAA…………

Okay – deep breath.

The fact of the matter is this – at the very outset of all of this we talked about and I KNEW that there was a possibility that this would be six to eight weeks of NPO and TPN. Somewhere along the line it became more of an assumption that it would be SIX weeks. But – I’m not stupid; I knew that if the diagnostics showed that I wasn’t healing up, or not completely healed, it would mean more time NPO. And honestly – best case scenario, right? There has always been the option of other bigger, scarier, more horrible options in terms of treatment – like a big huge open surgery that would entail removing my mesh and replacing it with new and potentially – if things were awful enough – removing my stomach entirely. NOT a pretty scenario.

So why am I being such a whiner?

I’m just being a baby. I need to buck up and remember how BLESSED I am!

Yeah – so what, I don’t get to eat and drink yet. There are people around the world who NEVER know if they will have enough to eat and drink to sustain life. Not only do I have enough – I have IV nutrition that is getting me into FAR better shape nutritionally than I have been in months and months.

When it comes right down to it – I’ve had to suffer very little privation in the course of all of this. Everything that I have NEEDED has been provided. Yes, there has been pain and discomfort – but so what, who hasn’t suffered some pain and discomfort?

It’s time for me to pull up my big girl panties and buck up.

Three more weeks.

I can do that.

And I’ll be healthier for it, too.

My very dear friend Brenda sent me this great verse this morning – Psalm 107:1-9 (TNIV)

¹ Give thanks to the LORD, for he is good;
his love endures forever.

² Let the redeemed of the LORD tell their story—
those he redeemed from the hand of the foe,

³ those he gathered from the lands,
from east and west, from north and south.

⁴ Some wandered in desert wastelands,
finding no way to a city where they could settle.

⁵ They were hungry and thirsty,
and their lives ebbed away.

⁶ Then they cried out to the LORD in their trouble,
and he delivered them from their distress.

⁷ He led them by a straight way
to a city where they could settle.

⁸ Let them give thanks to the LORD for his unfailing love
and his wonderful deeds for humankind,

⁹ for he satisfies the thirsty
and fills the hungry with good things.

And I’m back to listening to “Made me Glad” by Darlene Zschech – this has been my theme song for a lot of this year – when dealing with the health challenges – both mine and William’s, financial struggles, dealing with all of the stuff with my brother. It’s just what I need to hear – and it restores my soul.

I have a lot to be thankful for, don’t I?

So – my guess is that some time in the coming week I’ll get the call to come in for the stent removal. It needs to be removed – pretty darn soon, too – to prevent it from embedding into my stomach tissue. I’m guessing that’ll be an outpatient procedure this week. So, another trip to anesthesia land. I can handle it. I’ll just schedule in a day and a half to sleep afterwards! LOL!

Okay – I’m doing better now. I’m getting a grip. Three weeks really isn’t all that long. I can do it. It’s an investment in my future, right? Praise the Lord for this option! It could be MUCH worse in so many ways, shapes, and forms. I have MUCH to be thankful for.

….like maybe eating Thanksgiving Dinner! LOL! J

Wellness Topics – B Vitamins

Wellness Topics.

This is a GREAT resource!

Potassium Citrate May Prevent Kidney Stones in Children on the Ketogenic Diet

Did you know that DS’ers seem to be more inclined to develop kidney stones?

Major culprits?

• High fat/low carb diet
• Insufficient calcium citrate intake
• Chronic dehydration

Here’s a great article – it makes a LOT of sense!

Potassium Citrate May Prevent Kidney Stones in Children on the Ketogenic Diet.

The unofficial word…

Today I visited my friends in radiology at Good Samaritan Hospital.

We had a date for an Upper GI.

I was really looking forward to it – even though it meant I had to drink the nasty gastrografin junk.

I really like it when you get the same radiologist from the time before. It makes perspective pretty accurate, you know?

So I went. I drank the yucky stuff. And I got to view the films with the radiologist – who was nice enough to take the time to share his thoughts. He said:

“WAY better than last time.”

“I don’t see the fistula at all anymore.”

“There’s no communication between the stomach and the abscess.”

“There is a small hair-like shadow along the bottom of the stomach. But nothing is going through it. Maybe it’s just a shadow, stomach angle or something.”

I asked if I could get a cup of water to rinse and spit, and he said, “You could probably just drink it!” But I decided I AIN’T GOING THERE UNTIL DR. ZELKO SAYS I CAN!

All of this is wonderful news! I’ve been doing some good healing these last three weeks! Hallelujah!

So now I wait.

For Dr. Zelko to call.

Might be tomorrow.

Might not be until Friday.

Yes, I’m antsy.

Six More Days

I’ve been kinda quiet here, haven’t I?

Honestly, it’s been sorta boring.

I’m doing the stuff I’m supposed to do – for the most part – the resting thing is harder than some other things! LOL! Doing the TPN for 16 hours each day. The nurse comes once a week for a dressing change for the PICC line and to take labs.

I’ve been trying to catch up on email. That’s been a good thing to do. I’ve got a couple thousand flagged emails left in my inbox. Not sure if I’ll ever get completely caught up!

I’ve been washing a lot of dishes. Our dishwasher gave up the ghost Saturday, and we don’t believe in paper plates here (we’re such tree huggers!) so that means lots of dish washing. Honestly, it’s kind of therapeutic – AND – I love it because it helps warm me up! LOL!

We’ve had a progression of kids getting sick with the flu. Not pretty. But I’m SO thankful that it hasn’t hit me! (Cause it’s all about me!!!)

I decided it was time for me to start helping with dinner, too. I hadn’t been cooking much up until this point – because, honestly, I’m still a bit hungry. But poor John – he’s been so dumped on, I decided I needed to help. And it’s been fun! I’m actually really enjoying it.

Last night was the biggest temptation to put something in my mouth yet. We did breakfast for dinner last night – omelets, hashed browns, and coffee cake. I found an old recipe for coffee cake that I used to make when I was the baker at Sambica – it’s a really good recipe – and the smell of it baking was just about enough to do me in. Gosh I wanted to eat it so badly! And then I cooked up the various toppings for the omelets… bacon, sausage, ham, mushrooms, spinach, lots of cheese…. I just wanted to snack on the little bits of the toppings – I nearly actually reached for a sautéed mushroom! I had to stop myself – it was a reflex, not even a conscious thought! Wild!

The big thing that I’m doing, though, is counting down the days until my next Upper GI. Yes, I HATE, detest, abhor, etc. the gastrografin – but I’m so ready to know how things are progressing – you know?! I have an appointment, though. It’s next Wednesday, the 28^th at 2:15 pm.

I should be getting scheduled for the stent removal for shortly after that, as well. I’m not sure if that will be an outpatient procedure or not – I’m supposed to hear from Dr. Zelko about that after the Upper GI.

So – I’m waiting some more. Seems to be my theme for this year – I’m thinking!

So that’s the scoop!

More as I know it!