Oh the things I learn…

Toward the end of May I went for yet another follow-up appointment with Dr. Halpin (the surgeon who put me back together again in February) to check how the healing of my incision was going, check my weight, order labs, etc. The incision was still not quite closed. The labs were ordered. And my weight was up – again.

I’ve mentioned here before that I’m freaking out about my weight, right?

My very lowest weight – for less than a week – after coming home from the hospital, and when I was pretty darn sick, was 118 lbs. WAY, way too low. I looked so not good. I knew it. It was the first thing that came out of people’s mouths when they saw me, “Oh my goodness, Dina! Are you going to be okay? You can’t lose any more weight! Just how sick are you?!” It cemented in my mind that that low is NOT a good thing.

Okay. I can accept that. Never wanted to be 118 lbs. No big goals to ever be there again. Promise!

I spent quite a bit of time – before surgery in February – and for a little while after at 125 lbs. I like 125 pounds. It felt comfortable. A little foreign, but something I could get comfortable with for the long term. I still got some comments about how thin I was – but mostly from people who have known me since before my DS.

At 130 lbs people started remarking how much healthier I looked. Probably because I was getting healthier at that juncture after the February surgery. I had iron stores in my body again, my hemoglobin was higher than 6, I’d had 5 units of blood while in the hospital, I was healing, and starting to consume calories by mouth. Everyone agreed – I looked way less frail at 130 lbs. I was comfortable at 130 lbs. I’d happily stay there – although, being brutally honest, I’d probably think wistfully of 125! (I’m just saying!)

At 135 lbs I started to have a little bit of a panic. Not full blown, but it was there. It wasn’t so much the actual number – but the TREND that was so alarming. Dr. Halpin also commented on it at an earlier appointment. She made a remark somewhere along the lines of, “Well, we want you to gain some, but you need to be careful to not gain too much.” She’s a nice girl, I like her a lot, and she’s a good surgeon – but, hello – DUH!

Nowadays I hang out somewhere right around the 137 to 142 range. It’s seriously freaking me out. I *can* get back in one of my size 6 slacks – barely, and not very comfortably. But I’m kinda in that weird sorta an 8 – depending on the brand, or maybe a 10, depending on the brand zone. Know what? The size isn’t that big a deal. I don’t really care what the number is on the label of my clothes so much. What concerns me so much is that it wasn’t that long ago that those size 6’s were roomy – now I can barely stand wearing them, they’re so snug. That’s alarming.

When I was at that late May appointment I remarked to Dr. Irani (a surgical fellow who works with Dr. Halpin) and Dr. Halpin how much I was freaking out about my weight gain. Dr. Irani said, “But Dina, you have so much excess skin!” and right on the heels of that Dr. Halpin said, “The extra skin is fine, the extra fat is not.”

And you know what?

She’s absolutely right.

You couldn’t say it any better, or more succinctly.

And THAT is what’s freaking me out.

Yes, I know – having NO body fat is not good. But having too much is what started this whole journey, right?!

I’ve had a series of conversations with Dr. Halpin about my history – she’s seen my op reports, seen my before pictures, I’ve tried to explain to her how I can diet with the best of them – but to no avail. Thus, the fabulous Dr. Baltasar and the DS he gave me that rocked my world in only the best and most amazing ways. Dr. Baltasar and I talked long and hard before my DS – about how with my extensive degenerative joint disease, osteoporosis diagnosis, need for multiple joint replacements, and the fact that my future would hold no concerted exercise regimes. That’s when he said to me that fabulous thing, “Why should I give you tool, when I can give you a fix?” He so GOT IT (and still does) that my body was better than most at storing.

So – at said late May appointment Dr. Halpin said, “Have you had metabolic testing done before?”

I looked at her blankly. What? What’s that? thought I. “Ummm… no, I don’t think so.”

She said, “Let’s send you to get tested. It’s really easy, only takes about 20 or 30 minutes, and it’s great information to have.” And so she wrote the order.

As I was leaving that appointment, Shannon, Dr. Halpin’s fabulous MA, faxed the order over and gave me the instruction sheet. Here’s what it says:

Metabolic Testing Instructions

The basal metabolic test measures energy expended in a resting state.

The test gives us an idea how your energy expenditure compares to the average for persons of your weight and height.

On the day of your appointment drive to the valet parking at the hospital. Check-in and then you will be escorted to the waiting area for your test. The respiratory therapist will accompany you to the lab when it is time for your metabolic testing.

Day of Testing:

DO NOT

  • Eat breakfast or drink any calorie or caffeine containing liquids.
  • Exercise (Keep overall activity to a modest level)

DO

  • Drink water or non-caloric and non-caffeine containing liquids. (It is important to stay hydrated.)
  • Take your normal medications.
  • Dress in loose and comfortable clothes.

Testing occurs while laying in a comfortable bed. To take respiratory measurements a clear plastic hood is draped over the head. You will not be required to use tubes or mouthpieces. The actual test takes about 20 minutes.

Seems straightforward enough, right?

So, this past Monday (after another weekend in the hospital – but that’s another story!) I duly fasted, avoided caffeine, and pretty much stayed pretty low key. I showed up to the hospital at the appointed time, got checked in, and in short order was in the lab, laying on a very comfortable bed, and wearing the hood referred to above. It took all of about 20 minutes. At the conclusion of the test, the RT handed me a print out that said:

Measured Resting Energy Expenditure (REE): 959 Kcal/day

Predicted Basal Metabolic Rate (BMR): 1368 Kcal/day

REE (% Predicted): 70%

What all does that mean? Here, let me give you Dr. Halpin’s explanation of it:

Your basal metabolic rate is 70% of what we would predict.  That means you are burning about 1000 calories at rest when we would expect you to burn about 1400, or a 400 calorie deficit.  That reinforces what we already know.  The best thing to deal with this in order to maintain weight is to increase activity and try to increase muscle mass through resistance training (or weight training).  I know you have some mobility limitations, but try to do the best you can.

Which leads me to at least think very loudly this question:

So has all of this been for naught?

(Do I sound whiney? ‘Cause I sure FEEL whiney!)

‘Cause I mean – HELLO! – I started this journey with a BMI of 66. But I’m the girl who has been to every nutrition class under the sun – I TEACH this stuff. I know what to do. I do it. And yet I still gain.

THAT IS THE STORY OF MY LIFE!

I have not been through all that I’ve been through in the last 8 years to end up back where I started.

:oh sigh – I miss my DS!:

But what is maybe more disconcerting to me than “just” gaining weight, is the fragile and delicate balance that is my orthopedic nightmare girl state of being.

What may not be known by many is the fact that my left ankle reconstruction was a stop gap measure. It is hoped that it will be a long-term stop gap measure. It is hoped that I will never need the ankle replacement. And if I ever do need the ankle replacement, one of the conditions of being a candidate for that surgery is having a BMI at the low end of the normal range – putting me at somewhere in the neighborhood of about 120 pounds. Yes, lower than I want to weigh – but what would be required for surgery and recovery to have a chance of success. As it stands, I will need to continue to wear the brace that I’ve been wearing for nearly a year now for yet another year. At that time, my orthopedic surgeon will determine if this reconstruction has been a “success” or not. My mobility *is* impacted by this ankle surgery, I must take each stair slowly and carefully and hold on to the hand rail – always. I cannot walk a straight line – the disparity in leg lengths (between right hip replacement side, and left ankle reconstruction side) makes it impossible, as does the severing of muscles and tendons that went on at my ankle reconstruction last year. Standing or walking for every long is not a good thing. In the course of just normal life, I deal with pain, swelling, and must strategize how long I can be upright and active. Keeping in mind that NSAID’s are no longer a part of my world – dealing with pain is just that – learning how to deal with it without aid of medication.

Many more pounds and I will be back in a wheelchair. That is why I went forward with my revision. I was 193 lbs-ish at the time of my revision, and it was a universally accepted fact that my mobility was leaving. When I say many more pounds, I’m not talking a hundred pounds, I’m talking as many pounds as I’ve gained since my February surgery. That’s frightening.

Many more pounds and I will not be a candidate for the remaining orthopedic surgeries that are looming on the horizon. The feeling is that my left hip will need replaced in maybe a year. Both knees need replaced. I will hold off on them as long as possible. I have no desire to see the inside of an OR again for a long, long, long time. So why even factor them in? Because I don’t want to lose my mobility. I’ve spent 2 years of my life in a wheelchair. I. DO. NOT. WANT. TO. EVER. BE. THERE. AGAIN. But, if I do – I’ll deal with it. In the meantime, it will be all out warfare to keep from going there. I am 46 years old. I would like very much to stay mobile – on my own two (somewhat decrepit) feet for another 30 years at least, thank you very much!

Many more pounds and my ability to function in some of the most basic of ways goes away. I can tell you without a doubt that I wouldn’t be able to do the job I currently have. I wouldn’t be able to be in the garden growing the food that we rely on year-round to feed ourselves and our families. I wouldn’t be able to tend my flock of chickens and reap the benefit of the eggs they produce for our own family’s nutrition, and the extra income that those eggs bring in. I wouldn’t be able to get in and out of the house we currently live in.

It’s hard to succinctly sum up the storm of emotions that rages inside me right now over all of this.

So – I do a lot of thinking and praying. It’s a good thing God is patient – ’cause if it was me listening to the cries of this heart, I might be a little tired of it all by now.

I try not to think too much about the course of events that led me to this place and think “if only…” – it’s wasted effort.

I’m counting calories. I hate counting calories. (Have I mentioned yet that I miss my DS?!) I’m trying to eliminate all sugar from my world as much as is possible. I’ve even (for the most part) given up my first thing in the morning cup of tea with honey. I can’t afford the calories that the honey brings with it – no matter how wonderful it is.

I’m strategizing trying to continue to build strength in my left ankle and my ability to be moving more. It’s hard, because it involves significant pain. Pain that I can’t just pop an Advil or Tylenol for.

I’ve decided that if I ever end up needing to go back into the OR for anything gut related I will insist on a shortening of my common channel. I’m pretty much not malabsorbing at all with this 100 cm common channel – everything supports that. And honestly, it’s my only surgical recourse. And of course, every time that gut gets touched in surgery – the higher the chances for significant complications. So it’s not something I would go forward with without a lot of fear and trepidation.

And I’m trying to work on my attitude. I admit it – it kinda stinks. I’m sorta mad, to be honest. And while I’m not mad at anyone specifically – I am mad at the whole big huge ball of wax. It sucks. And I think it’s okay to feel that and express it and be honest about it. I need to work through it, though, because it’s wearing on my heart. And it’s not the only thing in my world that I’m angry about right now. I gotta tell you – I’m so thankful that God is not afraid of my anger, and that I can express it to Him openly without fear of hurt feelings or someone’s need to feel like they have to make it right. I just need to be able to rant to Him – and well – ranting I am. And I’m expressing a lot of my fear to Him, too. ‘Cause fear is a very real factor in all of this… And fear is not from God – I know that with everything that’s in me. I know in my head and heart – and feel in my soul – that He is so carefully, tenderly, and faithfully loving me through this stormy season of my life and heart.

Oh, what a horrible thing it would be to go through this storm without Him!

As usual Kirk and Toby know exactly how to say what my heart is needing expressed. Enjoy.

I Am God by Kirk Franklin.

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7 Comments Add yours

  1. Jenn White says:

    Oh Dina…. my heart goes out to you. I know I could not have handled 5% of the adversity you’ve faced with the grace and poise you’ve shown. I know you think your attitude stinks but, at least you are DOING what you need to do and not giving up. I don’t think I could follow a low cal diet for even 1 day. I am a total food addict and that is STILL ruling my life.
    Interesting that you say a 100 cm common channel means full absorption. I have a 100 cm common channel… I’ve been walking around thinking I am only absorbing 20% of fat and protein… not true. I can tell by my weight (237 and climbing) and by my poop… (TMI). The DS for me has been a disappointment. But- I really, truly do share the blame for that disappointment. I am not calorie counting and I eat what I want to eat.
    Anyways, I appreciate you sharing. As always, you are a great writer. You have a knack for describing things in a way that puts the reader right there with you. Keep it up!

    1. Dina says:

      Jenn – I think a 100 cm common channel is fine for some people. For me – not so much. I’m REALLY struggling with constipation. No more of those DS BM’s that mean your surgery is working, you know?

      And honestly – it has everything to do with that *beautiful* trinity of sleeve capacity (small is best!), alimentary limb (moderate), and common channel (short for me, please!). You get those off, and well – it just doesn’t go as well.

      I’m so sorry you’ve had to deal with a disappointing DS. It’s supposed to be a thrill ride – as in everything about it wild and wonderful. I’m sorry it hasn’t been for you, Jenn!

  2. Linda Taylor says:

    Thank you for being so open about what you are thinking and feeling. I have fibromyalgia and can take/do very little for it so I understand in a tiny, tiny way how you feel. And sometimes I feel the angry “why me” feelings when the fatigue and pain get to be an overload. So it is good to know I’m not the only one who feels that way, even though I can’t begin to compare what I endure to what you endure and face in the future. You will definitely be in my prayers now that I “know all” :-).

  3. Pat Madrid says:

    Hi Dina,
    You’re a very brave woman, always remember that God is on your side, he didn’t bring you this far to not see you thru. You are in my thoughts and prayers. Be blessed.
    Pat

  4. anne ste says:

    Hi Dina,
    My revision (sleeve and hopefully rearranged to a Hess Method in my small intestine) is scheduled for Monday after next (the 26th of July).

    Your entry here is just what I’ve been praying for, and G-d works in mysterious ways. I never would have seen this (your) entry unless I’d seen your Big Loser post, and then followed it here, and then clicked on another one of your links.

    I needed to see this entry at this point in my DS journey. I have been hoping and praying for a DSer who “gets it.” Someone who understands, beyond the shadow of a doubt, that a revision to an original DS is not to be ashamed of. Yet, I cannot help it. I’m ashamed of it. (This, too, shall pass…I know…but…our cohorts just won’t give it validity. I’m pretty sure I’ve got one of the MOST EFFICIENT FAT AND ENERGY STORING METABOLISMS out there…but I just don’t get the props I’m so searching for from our DS tribe.)

    Not many of our cohorts in the DS world are able to relate to a high BMI start weight, nor a slowing-down or stopping of it – without laying blame on the person. As if I haven’t “taken advantage of my weight loss window” enough by being on the Atkins diet as a way-of-life before my “weight loss window” closed. If I could stay on a ketosis-induced diet for life, I’d just do that for the rest of my days. Wouldn’t I?

    I don’t know how to approach my new surgeon, without sounding like a know-it-all. I don’t wish to put him off with my know-it-all attitude, or that I really do believe I need a much more malabsorptive, and much more restrictive surgery than I had the first time around…and while communication is usually my forte…and I’m usually able to get my point across without offending…I have little hope at this point that I can get what I need out of the surgery/surgeon because of my “I think this would work best for me” speech. Help?

    Just to remind you of my situation, I went to Dr. Smith in Atlanta, GA for my first DS. I was 440lbs, and at the time, didn’t want to have it open, since I felt my immune system was not going to be able to handle any infection of a wound (and so many of our DSers at the time were having the need for wound-vacs, and wound nurses, and wounds were REALLY causing SO MUCH trouble for DSers then).

    I went to Dr. Smith because of his stellar reputation, and because he was willing to take me on. I had severe sleep apnea, beginning signs of congestive heart failure, high blood pressure, moderate osteoarthritis, nocturnal urinary incontinence, and depression. Oh! And I walked very short distances, with a cane, due to my back spasms that would come on after only 3 minutes on my feet. Other than that, I’d shop in a scooter in the grocery stores.

    Unusual thing about me is that I was working out aerobically in the water 3x/week. Even with all of my comorbidities. I may have given Dr. Smith the wrong impression of me – that I was an active woman, even if very heavy.

    Dr. Smith and I had a brief appointment the day before my surgery. I was so proud of myself for learning as much as I possibly could about the DS – that I even asked him to go through it – speaking it through as if he was talking to a med student – to see if I could keep up with him in my mind. I was thrilled (not sure if he was or not) that I could do it! Most of what he said made sense to me! (Not things like the names of the tools he used, or the points he had to identify, but the way it was to progress…I thought that was pretty impressive. In retrospect, perhaps I just pissed him off?)

    Anyway, my reason for explaining all of that is that perhaps he gave me a “conservative” DS. Perhaps my limb lengths (alimentary/biliary/common channel) were left longer than some because I’d indicated I was an active woman.

    Holy holy. That couldn’t be further from the truth – I had been active – for years – to try to get my weight OFF my body. I became an aqua aerobics instructor for the selfish reasons of getting my workouts in, while bringing along others who wanted/needed it, too. And who’d prefer to workout with other chubbies so we didn’t feel so alone. I think I may have come across as “bragging?” about my activities…or had given Dr. S the wrong impression of myself – – – cuz – – – as you know – – – and I know – – – my weight loss went from 440 lbs to 300 lbs, and stopped.

    Any ideas for me?

    I’m sure I’ve already shared with you, as I have with so many others, that I believe I was given a non-Hess Method DS (as shown in my Op Report from S). Dr. S doesn’t measure or do the Hess Method. He told me so himself. So now I’m looking for a revision to the Hess along with a much more restricted sleeve.

    Any suggestions on how to approach this with my new surgeon? Dr. Greenbaum?

    Oh! And one more thing! I’m just like you, but undiagnosed so far…my hips, knees, and back are so full of arthritis, that I hurt most of my days through. I don’t take NSAIDS (Advil) like you did BECAUSE of what you’ve been through. (I was taking them, but stopped cold.) I’m 45 years old, but inside, my bones, joints, tendons, ligaments, and muscles can feel like they’re 80 on many many days. (I suppose THAT is what Dr. Smith should have known about me before cutting, huh?)

    Oy. G-d does work in mysterious ways.

    I’ll put you in my prayers, Dina. The emotional trauma of a looming weight gain is tantamount to an iron anvil over your head. So hard to live with – and still be in physical pain.

    Say, one more thing, and I’ll leave you be…have you ever tried a pain patch? I’ve heard there’s such a thing as a ‘fentanyl’ pain patch that helps with bone pain. (Used for cancer patients, but perhaps your doctor would give it to you once? To see if it’d help?)

    Hugs,
    anne s.

  5. Dina says:

    Anne,

    I’m so pleased to hear that you’re going forward with a revision. I know – it’s nothing to be taken lightly. But I agree with you – you did NOT get the DS you needed.

    I’ve got lots of thoughts for you – so will respond via email, okay?

    Hugs,

    dina

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