Day 30. 30 days since the first half of my 8 million+ stem cells were infused back into me up in Iowa City. I was suspicious of a conspiracy; that my cells would be altered and I’d emerge an Iowa Hawkeye. No way! I still bleed Badger Red.
I continue to be plagued by diarrhea. Imodium (at higher doses) and Lomotil help, but haven’t been able to shut it down for more than four to six hours at a time. If I try to crank up the dose of Lomotil, I get the worst case of dry mouth I’ve ever experienced. Food becomes tasteless and dry.
Despite the ongoing complications, I started maintenance bridge therapy this week; 3 mg Pomalyst daily for three weeks, along with 40 mg dex each week.
Speaking of food, most everything looks good. I watch ads for Pizza, seafood, fast food–even Dairy Queen. But sweets overpower me and I end up taking a pass. To heck with safe and bland! Unfortunately, I take only a few bites and I loose interest. My stomach starts jumping like one of those souped up cars the kids bounce in on Saturday nights. I’ve been living on a diet of scrambled eggs, oatmeal and a variety of hard cereal using soy milk so I avoid lactose intolerance. For those of you suggesting I eat yogurt and take probiotics rest easy; I do both daily.
The picture above was taken the weekend before I checked into the BMT unit for the second transplant. Dear Friend, Tim Hanna, and his lovely wife, Lisa, joined us for the photo. This was Lisa’s birthday cake. Packers logo across the front, no doubt! My GI tract and taste buds were almost back to normal; something to hold onto as I recover again now. I enjoyed more than one piece of cake at the tailgate that day.
My food of choice while out: McDonald’s sausage and scrambled egg wrap. Moist, relatively low carb ( I ditch much of the wrap) and affordable. Great timing for Mac’s to start serving breakfast all day.
Food is more than symbolic at this point. How many of you retained large amounts of water after engraftment? At one point my thighs, ankles and feet from above the waste down had been retaining water; so much that it became painful to walk–and I’m not talking about the uncomfortable reality that all of my shoes no longer fit. Thank God I had Ed Wolfman’s gift of over sized UW Badger slippers. They fit. Thanks, Ed!
But even if I can find shoes that fit, the water weight trapped in my legs make it difficult to walk or to put pants or socks on.
The same thing happened this summer. As a matter of fact, it was worse, so I know it should resolve on it’s own. This summer’s water retention was so bad, it pushed my blood pressure up and kept my resting heart rate up over 100 for over three weeks. The stress the first of my tandem transplants put on my heart was one of the reason’s I hesitated to get back on Dr. Tricot’s tandem train.
Both times, the skin at my ankles and feet were pulled so tight it was scary! Notice I’m using passed tense. Some things have improved over the past 30 days. While I’m still retaining an uncomfortable amount of water from my knees down, water weight around my abdomen is gone. So are my puffy cheeks and any upper body involvement.
Good news, right? The water I’m retaining is on the way out. That is until I step on a scale.
Water retention had lulled all of us into a false sense of security. My weight starting out was 150 lbs. When I checked out on day 16, it was up to 156 lbs. My face was full and everything but my stumps looked pretty good. Monday my weight was 154 lbs. But as the water bids me adieu, a scary reality remains. Thursday my weight was back down to 150 lbs–and that’s with shoes, jeans and a coat on.
I’m already so thin. I can only assume that once my legs are back to normal, my weight could well be down to an alarming 145 lbs.
I’m trying to do something about it. Even though most food doesn’t taste good, I’m forcing myself to graze throughout the day. Smaller meals are best; a holdover from the infection in my stomach that wouldn’t allow food and drink to pass into my intestines for weeks up in Iowa. When done right, grazing also helps keep my nausea and acid stomach under control.
I’m lifting light dumbbells (5 and 10 lbs) and doing push ups again. I’ve started swimming laps (with my head above water for another week or so). It’s are private pool. I’ve got the chlorine cranked. And Pattie swims a lot in the bigger pool over at the YMCA–basically I’m the only one using it. It’s a lap pool; 10′ wide and 28′ long. 8 – 10 strokes makes up a lap. A bit tight, but larger than most down here.
I try and subscribe to many of the eating suggestions Danny makes; I eat a very low carb diet, high in fresh vegetables and lean meat. I do eat a lot of dairy–less so to avoid possible lactose intolerance first few months following my transplant. Trader Joes sells an amazing yogurt cheese in two varieties. They also sell the lowest carb, healthiest flax seed tortilla chips. I need to get back there this weekend; the closest store is almost an hour away. Fun to take the St. John’s River Ferry at least one way. Reminds me why we moved here.
It doesn’t take long to realize the muscle mass and weight falls off faster than I can put it back on–at least at first. But when you’re trying to move carefully as not to stir up diarrhea, that doesn’t help the cause.
I was pleased to see that Danny gave recovering transplant patients a pass on eating carbs. No question my body handles pretzels, cereal and pasta better than an overload of protein.
Between the two of us–and knowledgeable reader comments and suggestions–I’m hoping we can help fellow recoverers get back on their feet a bit sooner.
I’ll follow up on this and other ways readers can benefit before Danny’s next installment runs on Monday. Feel good and keep smiling! Pat