“32 Mexican jumping beans” that is what Wayne calls them. His meds have been cut now he is only taking 32 pills a day. His morning physical therapy is trying to put one of those pills in his mouth. Now he doesn’t complain about the “horse” pills, they are the easiest for him to “catch.” Those pills will just not stay put but are jumping around everywhere, or at least that is what a man with tremors thinks. It keeps him busy for bit and gives me a chance to think about what to feed him for his mid-morning snack.
Wayne said I shake, really shake, I said he shakes, really, shakes Doc said shake it, can’t shake it Until no more meds shake, Wayne, shake So…Come on over, whole lotta shakin’ goin’ on.
Wayne is taking extremely high does of immune suppression drugs, higher than the recommended dose. One of the side effects of high doses of immune suppressing drugs, (lots of Rx:tacrolimus) is tremors. NO KIDDING!! He is shaking …and shaking. All this shaking is exhausting. Worse yet, I am sure all this shaking requires energy, which translates to calories consumption. No way will he be able to gain weight when all the calories he takes in are used up shaking. I just bet they have not studied the amount of calories these tremors burn up. Regardless, he isn’t consuming enough, no matter how I try to entice him with food. We now have firsthand experience with some of the challenges and frustrations that people who live with tremors encounter. Man we can now better understand the difficulties that some of our older relatives have dealt with. Don’t try this if you have tremors:
- Sign any important papers – the identity theft alert is sounded
- Put eye drops in your eyes –unless you have large supply on hand, even if you don’t poke your eye out
- Clean your ears – however, in Wayne’s case, it may be too late
- Eat without a bib – have a change of clothing readily accessible
- Eating with glass dishes – man-beating dishes with utensils may cause damage
- Use scissors – can be mixed up with 3-year-old granddaughters pre-school work. Even more worrisome if you happen to be someone whose blood platelets are low and you don’t clot easily. there may be some truth when you say, “ this paper cut is killing you.”
This list could go on but I don’t want to miss the fun. I have just picked a button down shirt for him to wear. That will keep him busy for hours. Maybe it will convince him he better eat.
To avoid a trip to the medical center some words of advice: People who have low platelets (these are folks whose blood is slow to clot) People diagnosed with a stomach ulcer People whose guaiac results (stool sample test) may really be a false positive DON’T EAT BEETS!!!! – The things they forget to tell you.
Wayne has not only lost weight, he has lost his cushion. Yes, he has lost his butt. So now when he sits down he has to have a cushion because he doesn’t have any cheeks to land on. I wonder if the “Mrs. Doubtfire” rump is available for rent?
At every clinic appointment we get the big speech cautioning about infections and fungus (fungus and molds are not always easy to spot, so everything is suspect). Let me tell you that what this does, it terrifies the cook! Just imagine if I made something that really made him sick! This isn’t the “that stuff was so bad it makes you think you were sick,” this is the kind of really sick that a person ends up in the hospital and it could be life threatening. No pressure –huh! But some one must brave the lion, face the enemy, now I taste everything- multiple times, test run my recipes, I am in the Navy cooking for the Commander-in-Chief -our president, assuring the utmost security precautions. All of this comes with a price, I am now wearing my “just-in-case” wardrobe, worrying that I may have to add additional pieces to it if this continues. Oh well, someone has to “take it for the team.”
We all have them. Multiple wardrobes. The winter wardrobe, the summer wardrobe, the dressy night out wardrobe, the vacation wardrobe and yes, the “just-in-case” wardrobe. This “just-in-case- wardrobe may be many things, but for many of us, this is the clothing we keep in the event that we gain back that weight we just lost, who knows it might just happen, right? So “just-in-case” you keep those precious clothes. Wayne has always had his “just-in-case” wardrobe, but sadly it does not cover us in this event, weight loss of a more that one clothing size. If he doesn’t stop losing I will need to go shopping, hum… Worse yet, if he keeps losing and I keep gaining we will be able to share, I can roll the legs up and he can wear them as capris.
Wow – how true is that quote. He truly has gotten thin. The good news- thanks to Wayne’s transplant his purpose is life. Below you will see the graft of weight gain and loss that he has had. Comparing the height of his weight gain (a result of 40 pounds of fluid retention), to his current weight, in total he has lost about 68 pounds. He is down almost 28 pounds from his normal. Fortunately I know where some of it is “hanging around” we just need to get it back to it’s rightful owner.
Cookies are out. Can you believe it, one of my favorite foods and now he doesn’t like them! He does not like anything sweet – it doesn’t taste good. Really, I can see not eating cakes or pies, but cookies! According to his physician this may or may not change. I guess I should be happy and not “kick a man when he is down,” after all, he is really doing me a favor. However there is this little glitch – I cannot waste food, having been raised with the guilt of “you better eat that because there are starving children in Africa” parenting trick, I again will sacrifice for the greater good. There should be a notable improvement in the nutritional status for several of those starving kids.
What, you must be kidding! We have never even had a saltshaker on the table. But his electrolytes are still out of whack and he needs more salt. Doctors advice: salt everything. No more water or ice as it dilutes the sodium in his system. So we are buying lemon-lime Gatorade by the case – it is the only flavor he likes. And of course, salting everything! For some of us eating this salty food results in fluid retention, not a great look and it can really limit the cute shoes you can wear now that your feet are swelling. Why don’t they just give him salt pills, they give him pills for everything else?