It's time

Lord knows I've delayed this as long as I could. But it's time.

Time to get in shape and to lose weight.

Did you know that centers have weight/BMI limits as part of their transplant qualifications?

They do.

In some instances, they'll require weight loss before they'll add you to the active transplant list.

And if you attempt to lose weight (or not) and don't, they may even recommend bariatric surgery.

That seems a bit extreme... to have an invasive surgery so you can have another invasive surgery.

Additionally, there's some controversy about how much weight to lose. Studies show that heavier dialysis patients have better transplant outcomes than dialysis patients with lower body weights.

So what's the happy medium? How do you satisfy the transplant centers while assuring that your transplant odds are as high as they can be?

Honestly, I think it's just using some common sense and making an honest effort.

My goal is to bring my weight into what I consider a healthy, maintainable range for me - this factors in my preferences, lifestyle and body type. Technically, the CDC will still classify me as 'Overweight' but I'm okay with that. Anything lower will give me that gaunt, "she's lost too much weight/is she sick?" look.

With an eGFR of the high 20's, I still have a while before my weight truly matters. So I'll thoughtfully be addressing my eating & exercise habits (or lack thereof) and focusing on developing my coping skills (so stress doesn't equal ice cream binge). No "lose it all in two weeks" mentality for me.

I'm confident I'll get there in time.

Comments

It's a family affair

Both of my brothers have ADPKD as well. The odds of a PKD parent having a child with PKD are one in two. The odds of having two with PKD are one in four, or 25%. Three? a 12.5% chance. We "beat the odds" (i.e. the PKD is strong in this line). Thankfully - for me - my PKD is less aggressive (although still not good). While I have a bit of a "PKD belly", it's not excessive. And instead of true pain, I only suffer from discomfort. Not so for my little brother. Despite being nine years younger, his kidneys are MUCH larger. You can actually see the outline of them on his belly. And instead of discomfort, he experiences true pain. So much so that he recently went in for surgery to have the size of some of his larger cysts reduced. The surgery is called Percutaneous (through the skin) Sclerotherapy and is an outpatient procedure. Larger cysts are identified through a CT scan or MRI, during which the doctor inserts a needle to aspirate (drain) and then s...

It's getting real...

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.

Not quite two gallons a day

All I know is that one person lives at my residence (ME!) and I have seven empty five gallon water bottles that are ready to be recycled. So 35 gallons OF WATER over the first 24 days consumed AT MY HOUSE. And that doesn't include all the water and nugget ice consumed at work... or the clear sodas... Actually now that I think about it, I MAY have hit the two gallon a day mark. #feelinggood #hydrated

My Two Gallon Habit

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