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Archive for the ‘Tummy troubles’ Category

[This is the fourth and final part of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Phew! Ladies and gentlemen, we’ve made it through the world of tubies! I gave you an update on my own situation, a small glossary of terms commonly used in the tubie world, and an overview on types of tubies (and the corresponding who, what, where, when, and why of each). And now I’m to the most important part: the impact. The “so what?” So how is life with a tubie different? Well, everything is different, but nothing has really changed. Confusing? Obviously, as a person, I haven’t changed, but how I interact with the world has. Some days that change seems insurmountable, but on other days, it doesn’t make a dent. Most days, however, it’s somewhere in between.

I know I’m not the only one who feels like this. And maybe it changes, becomes less (or possibly more?) difficult as the years pass. I don’t know. I’m not there yet. But I do know that the good that comes with it (at least in my case) far outweighs the bad.

Because this series has been full of my words (and I know listening to the same person drone on can get old), I wanted to share the words of my friends who have been so helpful with this process. I asked them what they want people to know about feeding tubes and the people who have them.  Here are some of the responses:

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[This is Part 3 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Today’s blog is brought to you by the Letter “W.” Yep, we’re going to talk about the Who, What, Where, When, and ever-important Why involved in the use feeding tubes. There are tons of types tubes and even more reasons why an individual might get one. So I’m going to give you and general overview of the primary classes of tubes. I know everyone who has a tube, or “tubie,” has gotten those looks and questions. Truth is: most people don’t see tubes everyday; they may be curious, weirded out, or even afraid of them. When I first got my GJ tube, my nephew – the sweetest, most empathetic kid you’ll meet – was so incredibly gentle with me. I think he thought he was going to break me by giving me a hug. It took him a while to warm up to it and we talked a ton about it, but I’ve got those bear hugs back.

Tubes aren’t something to be scared of. Tubes don’t necessarily equate to loss of freedom and worsening of disease. In fact, feeding tubes prevent the progression of disease! And I have more freedom with my feeds and infusions than I have had in years. There are very few people that I know with tubies who don’t feel the same.

So let’s get rid of all the stigmas attached to tubes and take a journey with some of my incredible friends who just happen to also have tubes…

I want to issue the same warning I did yesterday: there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂

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[This is Part 1 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week.]

Today I went to see my tummy doc for the second time since I got out of the hospital in January. In honor of that visit, I’m going to start off what I intended to be my series on Feeding Tubes for Feeding Tube Awareness Week back in February. As one of the newest inductees in the tubie world, I want to take you on a journey. A journey through feeding tubes, why they’re necessary, and who may have one. But I’ll start it off with a bit on today’s visit and an update on our progress and my current state.

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As you may have noticed, I’ve been mostly absent from the internet for over two weeks now. Following an internet snafu at our apartment that took far too long to remedy (thank you, Comcast…), I’m baaaack! And we are now the proud owners of a land-line with a Massachusetts phone number! Yahoo!

I must say that it was somewhat nice not having internet. I didn’t stress over e-mail or Facebook or even the weather. Whatever happened, happened. It’d still be there when I got the internet back. I was able to check for important e-mails and monitor bank accounts and the like by borrowing internet from friends every few days, but it was for minutes at a time and just for the essentials. It was almost as if I were back in the 1990s! And I loved it!

But now that I’m back, I’ll give you a brief update on the last 18 days, you know, in the few hours I wasn’t catching up on sleep! 😛

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About 7 hours after I posted my last blog, I was finally settled in my room. By that time, my temperature had started rising. Before I fell asleep (around 8:30pm), my temperature had risen to 100.6. That’s nothing, my body told the nurses, just you wait and see! But the next vitals (around midnight), my temperature had risen to 101.8. I can’t still do better than that. My temperature at 4am was 102.4 and rising. Almost there… I hit 103.2 before it started going back down.

But my temperature wasn’t what really had them worried.

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I checked back in to Chateau de MGH last night. Yup, they just couldn’t keep me away!

Over the last couple days, I had been getting increasingly worse sharp pain in my upper left abdomen. I joked to Keith that my spleen and pancreas were duking it out. But I hadn’t pooped in three weeks so it could just be constipation, right? We started pushing mag citrate through the tube. 3 bottles over 30 hours, to be exact. No success.

It hurt to move, it hurt to breathe, it hurt to sneeze and cough and burp. I laid on the couch in the fetal position all day on Tuesday with the occasional moan or whimper. Keith threatened to take me to the ER on numerous occasions. I resisted. I had just escaped; there was no way I was going back so soon. I gave in to pain medication and took 4mg dilaudid PO. I didn’t even get a slight buzz… there was something wrong with that. Four hours later, I crushed another 4mg and put it through the tube. Still no relief. No wooziness even. What was wrong? Why wasn’t my body absorbing it?

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On Wednesday, after 25 days in patient at MGH, I broke out! But I did not leave empty-handed. They sent me home with a nifty new pump and GJ tube to help me get nutrition, 5-6 new medications, and gram-positive staph (as well as another bug I can’t recall) UTI.

The different fluids, formulas, and supplements that were able to get me home: Peptamen 1.5, TPN, Potassium, Magnesium, and Saline

I was so happy to get out of there that I didn’t even care they were sending me home with a REALLY nasty UTI. And – as luck would have it – we got a call from Dr. Sims’ office literally one hour after we left. My biopsy was back. Brilliant. Unfortunately, they wouldn’t tell us anything over the phone, but they were able to squeeze me in for an appointment in two weeks. (Usually it takes months to get in with her, so we’re pretty happy we don’t have to wait too long.)

Now that I’m home, I want to reiterate how much we appreciated everyone who called, sent cards, and visited. I don’t think I could have kept my spirits so high without you all. Especially our amazing visitors: Stef, Karen, Sarah G., Liz, Nana, Beepa, Ralph, Will, Sasha, Katie, Elena, Corynne, Missi, Erin, Crystal, Tapas, Sophie, Jonah, Rebecca, John, Sarah F., Aly, Rachael, Tali, and Kevin. Sorry if we missed anyone! And a huge thanks to everyone who sent cards. They helped keep the room festive during the holidays.

My Card Corner - Thanks for all the love! 🙂

Now I’m just readjusting to my freedom. I’m experiencing a bit of culture shock, coupled with how much more complicated my life has become with new medical devices and medications. But we’re hoping that with the better nutrition, we can better keep the mito from progressing. While I was inpatient, Dr. Sims added a few new supplements to my mito cocktail and we’re hoping that those will decrease the episodes of dystonia, seizures, cyclic vomiting, etc. and increase my quality of life. It has certainly been a tough year for us (and for so many of our dear friends), but we’ll keep fighting and looking to a better future. Thank you, once again, to everyone who has stood by us on this crazy journey. It wouldn’t be possible without you!

The beautiful view from our hospital room - Floor 22 of MGH

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