Halloween update

October 31, 2017 | By Terry | Filed in: Default.

Hiya gang.  Remember my last blog post where I said I got my surgeon’s approval for moving forward with transplant? How all he wanted me to do now was to get off of Peritoneal Dialysis (PD) so I’d stop gaining weight, move to Hemodialysis for a month and lose a few pounds, and we’d schedule surgery in a month?  That sounded great to me! Dennis was all approved, and now the surgeon told me directly that I was good to go in one month.  I got really excited, told everyone I was pretty much approved, and the one month wait began.

Wellll…. I got some pretty crazy news today. My dialysis nurse had me read and sign a “Care Plan” document, which basically outlines my goals of being there.   I read about my “weight loss” goal for being released for transplant. I couldn’t believe my eyes, the number they listed was MUCH lower than what I was led to believe by the surgeon.  I asked about this number, she told me not to worry as that number wasn’t the expected weight loss, it was more of a general guideline for the dietitian.   Ok, I was relieved, because that number was about 25 lbs of weight loss.

But then the nurse went to her office, and came back and said “but you do need to lose 12 more lbs for transplant release though”.  To this point, I’ve lost about 7 lbs… a pretty good clip in 3 weeks. The number that the nurse gave me today is that I have to lose 12 MORE lbs than I already have 😮 That means from the beginning, I was apparently expected to lose 19 lbs.

This is “news” to me – as my surgeon and counselor told me (a month ago) to “go to hemodialysis for a month, and lose a few lbs”… that was it. Well, I’ve been here 3 weeks, and have lost 7 lbs (I’d say that counts as “a few”). They made no mention of a certain weight, and certainly no mention of 19 lbs in total. My counselor has been calling the clinic on a weekly basis, checking my weight.  Why would they call each week if they wan’t me to lose 19 lbs? No way I can lose that in a “month”, which is when the surgeon said they’d call me.

So I’m thinking that there has to be a mistake… I called my counselor today, and of course she’s out of office until Thursday. So I’ll be waiting until then to see if this is indeed a “target weight” I need. If so, it would have been nice for someone to tell me about it, right??? *frustrating*

Look, if that’s the goal I need, that’s fine – I trust their judgement and will lose the rest of the 19 lbs. before surgery.  (I plan on losing MUCH more after surgery regardless) I just don’t see how that could have been a goal from the beginning without them telling me about it.

This brings me to the much bigger level of frustration. For the past two years, I was doing my PD treatments, waiting on Dennis to lose 60 lbs to be approved to be a donor. During this time, I was gaining 40 lbs. Back in April I was concerned about this weight gain, so I called the transplant team to ask to be evaluated – because I didn’t want to be a holdup when Dennis was ready.  If I had to lose weight, I wanted to start then and there by switching to Hemodialyis a long time ago.  Well they called me in for my yearly exam, did all kinds of lab tests, etc… but then I never heard back from them.  I assumed I was good to go, so I continued living my life on PD.

Fast forward to now, Dennis is all approved, and now my worst fear has come true – I’m the holdup now. They are apparently telling me I was 19 lbs overweight (12 lbs as of right now).   I’ve only gained about 5 lbs since April – so why didn’t they tell me back then that I was 14 lbs overweight? I’d have stopped PD immediately to start losing weight wayyyy back then, while Dennis was still losing his weight.

*very frustrating*


(ps – you’re probably wondering  why I didn’t alter my lifestyle back in April to start losing weight when I thought I might be overweight.  That’s just the thing, I’ve been living a very healthy lifestyle for the past 2 years. I eat balanced meals, very little junk/processed foods, and plenty of exercise.  The normal “non PD” me would have been losing 40 lbs over that 2 years, but instead I gained 40… all because of the PD solution I had in me 24/7.  It’s a constant influx of calories that my body could not handle.  Now that I’m off of PD, that siege of calories is no longer there, hence I’m losing weight now in the past month).  I’m very confident I’ll lose these remaining 12 lbs pretty quick, but it’s just crazy I was never told I had to before surgery.

October, 2017

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