Hey there! A lot of you saw my Facebook post last week and know the good news, but I thought I’d make an official blog entry to put in more details. We’re getting close to transplant time! There’s no actual date yet, but there will be shortly.
Getting to where we are now has been a very long, strange chain of time periods and events, I’ll try to explain everything that’s happened, and touch on a few things that went wrong along the way too.
As you’ve read in a previous post, my cousin Dennis has been on a very dedicated journey in getting approved to donate one of his kidneys to me. It’s been a very long road for him, and he’s stuck with it and deserves all the praise in the world. What a great guy. He’s lost almost 70 lbs, and has done countless lab tests on pretty much every system in his body. I can guarantee you he’s been through more testing than I have through all this.
Back to my chain of events… back in 2015 I did my initial testing for transplant eligibility. There’s no sense in looking for a donor if I can’t receive a new kidney, right? Well I passed everything no problem. I was in great health otherwise, and was at an acceptable weight. The problem was, Dennis was a great match for me but he was too overweight to donate. So he set on a 1.5 year journey to lose 60 or 70 lbs. During that time span, I was doing Peritoneal Dialysis . This is a method of filtering your blood by pouring a dextrose(sugar)-water solution into your abdomen, which pulls excess water and toxins from your blood (through your blood vessel walls), and into the solution. You then “drain” the dirty water, and “refill” with clean solution 4 times every day.
This is an amazing method, I can’t believe it actually works. I did this for two years – my numbers were great, I felt great, it was working wonders for me. The bad part was – at the same time it was pulling bad things out of my body, it was also pushing a lot of calories INTO my body. My body was taking in an influx of several hundred calories per day by doing these peritoneal dialysis treatments.
I tried to battle this seige of daily excess calories. I went to the gym 3x per week, rode my bike, walked, was as active as I could be when I had the energy to be. I ate healthy (for the most part, I’d splurge like anyone else once in awhile), but almost immediately after starting this treatment two years ago I noticed the number on the scale was rising.
All told, I’ve gained over 40 lbs in the past 2 years. So – while Dennis was losing all his weight, I was gaining all mine. I knew it was a race for our lines to cross at an appropriate time on the “weight” lines, but the ugly reality is, after he was at his target weight, I was over mine.
Here’s where the gray areas come in… The problem was, I didn’t know I was too overweight for surgery. I was supposed to have a “yearly evaluation” with the transplant team. I had the initial evaluation in August 2015. But come August 2016, nobody called me for a yearly evaluation. I knew Dennis was still quite a ways off from his goal, so I just let it slide. I had gained about 25 lbs that first year, but I was going to the gym, I was feeling good, so I just shrugged it off and I continued my treatments. Finally, in April 2017, I realized it had been 1.5 years since my last evaluation. I had gained another 10 lbs, so I was up about 30-35 lbs now. I decided to call the transplant center to ask for another evaluation.
They brought me in, was surprised (and apologized) for not calling me in 6 months ago. I re-did all my lab tests, and went on my way again. Nobody from the transplant center called me for a followup, nobody called for me to see a doctor, etc. So naturally I assumed I was “good to go”. I’d gained 30 lbs but I must still be good since nobody called me back, right?
Now it’s 6 months later (October 2017), Dennis is now at his goal weight, so they call me in for my final transplant evaluation. I see a doctor this time, and much to my horror he told me that I was probably too overweight for the surgery. I’d gained too much weight since my last assessment which “was in 2015”.
I told the doctor that he was missing some info, I was tested in April 2017, I did a bunch of labs but was never called in to see a doctor. I told him that I’d only gained about 5 or so lbs since April 2017 (I’d lowered my dialysis strength to save on calories)…. I told him that if someone would have told me in April 2017 that I was too overweight for surgery, I’d have been back to Hemodialysis way back then to start losing weight.
I don’t know the reasons why I never saw a doctor back in April 2017 – whether it was a bad counselor that I had, or miscommunication, or whatever – the important thing is, I have a new counselor now and she has been very good in communicating with me in the past few weeks.
Anyway, back to the doctor I saw here last week – he told me I was too overweight for surgery, and I’d have to lose weight. My heart sunk. I was so upset that nobody had told me this before. He then did me a favor by texting the actual surgeon, who was in the office that day. He popped in and did a visual inspection of my body. I had my PD solution in my abdomen that day (imagine a giant water balloon in your belly, it’s basically what it is)… He said that I appeared to be too overweight that day, but it wasn’t a fair assessment since I had the fluid in me. He told me to come back the next day “empty” so he could get a better judgement on it.
So the next day, I go see him (the surgeon) again.. “empty” this time… nothing in my abdomen. He laid me down on a table, felt my tummy a few places, pulled back and said “ah, you’re good, you’ll be even better in 4-5 weeks”. He did say that I was right on the border of being turned down though – and to not gain any more weight. In fact he wants me to lose a little.
So in short – both Dennis and I are approved for surgery, they just want me to go about a month without PD, to lose a few lbs. There’s no “goal weight”, but he wants to see a downward trend.
So that’s where we stand now. I immediately stopped peritoneal dialysis – I started back on Hemodialysis this past week. I’ve already had two sessions this week (Tuesday and Thursday), and I go back tomorrow (Saturday). That will be my weekly schedule.
My body is going through a big change this week. Since I’ve been carrying around 6 lbs of water in my belly for 2 years, you can imagine the “void” that’s left down there. I’m actually really sore being “empty”, but it’s getting better every day. I’ve started jogging again, which I haven’t been able to do in 2 years. (it was really tough before with all the water sloshing around in my gut). I’ve even lost about 5 lbs in the past 5 days – that’s amazing as I’ve done nothing but gain in the past 2 years!
I’m devoting this next month to losing as much weight as I can. I’m hitting the “fad” dieting hard. I’m not following a single diet plan, I’m just cutting out any and all carbs, eating nothing but healthy meats veggies and fruits, and exercising like there’s no tomorrow. I’m not going all “Paleo” again, but pretty darn close. It’s basically a short term “fix” – once I get through surgery I’ll get back to my normal lifestyle, which was already pretty darn healthy to begin with.
My counselor said after a month or so we can schedule the surgery (assuming everything is still ok with Dennis) – and right now their schedule is pretty empty for November. So we should be able to get a date pretty quickly after my month of Hemodialysis.
Terry (Oct. 2017)