A Mystery Solved

No news is good news, right? For the past few weeks I’ve been at home living out a daily routine that varies rarely. I get up around 8am (even though it’s a struggle to get out of bed) so that I can eat  a bit and take my first meds. The first couple of weeks this was followed by lying down on the couch to recover from that exertion. As the days went on, I was able to get around more, putter around the house, actually read books, take a baking soda bath (carefully taping my lumens high up on my chest to not get them wet), take another nap, try to eat something, and always always drinking with Pete pestering me constantly with “drinkie drinkie!” I am supposed to take in 2 L of fluids a day. Who can do that? So it was arranged for me to have a nurse come from Home Care in Kingston to set me up with a portable pump and administer a litre of saline solution over 3 hours. I rather like the rhythmic sound of the pump as it puts me to sleep. By then the kids are home and we chat, I try to eat something for dinner, we watch a show together and I am off to bed around 8:30 or 9:00. Tuesdays are devoted to driving to Ottawa Hospital for bloodwork and check in with the doctor. This means some careful organization of child care as it is the same day Jessie has dance, and yesterday was the first time she took the boat over and back to go to dance. I am so proud of her! Skyler usually goes to a friend’s until we pick him up.

Last Tuesday we were told my WBCs were now past 10! prompting me to ask again if it will slow down soon (it did, yesterday they were just over 9). RBC were at 133 and platelets weren’t high but decent. However, the team was confused as to why my Tacro levels were still so high so they asked us to return on Friday. Tacrolimus, if you recall, is the very important anti-rejection drug. Friday we were the one car not to get on the 7:45am so we were delayed an hour. No worries, the clinic says when we call, just get here when you can. What we didn’t know was that clinic ends at noon on Friday so there was no doctor to see us. Someone took pity on us and dredged one up, who did a cursory check up. We went home with instructions to stop the Tacro and let it dissipate until it leveled off. Taking one less drug was a welcome change. However, I had this nagging suspicion about the pill, that it wasn’t the same as the ones I had before. Yet the label on the bottle clearly indicated 0.5 mg twice a day. As the week went by, the levels dropped to a reasonable level.

Yesterday was a very long day– we got the hang of bumping up to the front of the ferry line (which you can do for medical reasons, thanks to the ferry dudes) so this time we actually got to the clinic several minutes early. The first sign that things wouldn’t go smoothly was that the waiting area was packed.  After an hour of waiting, Pete suggested that I get my bloodwork done now, which I did, and then we waited another half hour in the observation room, during which a nurse came to get vitals and ask relevant questions about things like what drugs I am taking and when, this to determine if there is something missing in my dosage to cause the increased Tacro.   The most dreaded part of this was the scale, because I have noticed I’ve lost about 10 pounds. Sure enough, I was just over 10 pounds under my normal weight (and this was with clothes on). I am trying to eat more, and have been, little by little, as I find more things that are palatable and stay down, but it is not enough, clearly.

When the doctor finally came in, we were pleased because it was the head of the team. He explained they were  on half staff this week due to a conference in Europe on transplants that everyone else attended. He was still mystified about the Tacro and was about to suggest switching to another anti-rejection drug when I piped up: Pete, show him the pills. Doc inspected them and didn’t think much at first when I commented that they were different from the ones before, saying that other companies have different looking ones. He looked more closely, at the bottle which said 0.5, and the pill which had a stamp on it with an almost indistinguishable 5 printed on it. Perhaps the decimal point rubbed off? He asked Pete to check with the pharmacy to identify what dosage it really was, while doc went off to see another patient. Pete knew before he even got to the pharmacy what the problem was. When he presented the bottle to the pharmacist, they confirmed it: I had been taking 5mg, twice a day, ten times the amount I needed! Pete did not freak out but was stern and firm with them, and they were clearly shaken. In fact, he said, the lady handed him the bag of new pills with shaking hands. We did not get charged for the  new Tacro and another prescription we were filling.  But this is a huge problem. Doc said he had never seen this happen in his entire career, to which I add, I had, 7 years ago, when KGH pharmacy gave me the completely wrong drug for AA and I happened to notice it was different  just in time. This led to an overhaul of their checking system behind the counter, so in the long run it was a good thing so no one else would make the same mistake. Not being litigious people, we have no desire to sue, considering the consequences of what could have happened had I not been told to stop the Tacro for a week.  I did not get double vision like last time, so there was no obvious sign, but as it turns out, too much Tacro can also cause fatigue, loss of appetite and vomiting, all symptoms I was still experiencing and shouldn’t have been. I kept wondering what nurse Katie meant a few weeks ago when she said this is my “honeymoon period” when I still felt like crap. Suddenly we had found the solution, and now that it has leveled off naturally, I need only 1.5mg twice a day to stay on track.  But the doc and nurse were shocked and befuddled, not knowing what should happen next. We suggested instead of suing, the pharmacy can compensate by covering the rest of the drugs I will be needing through treatment. That seemed like a reasonable suggestion to make. One can only imagine the meeting they are having about it today!

At the last minute I asked how my magnesium and potassium levels are and they acknowledge that they are still rather low. Katie arranged within minutes for me to go up to the day care on the 5th floor to get an infusion. My heart dropped when she says this would take 2 hours, because now we wouldn’t be back in time to pick up Jess from dance. Pete called some friends and arranged for the kids’ care until we got back, which was 7:30pm, hours later than we expected. We’d had no time to stop at the condo to get more stuff, and the owners are coming back on the 13th, so there is a vague plan for Pete to go to Ottawa alone to take care of it, rather than expose me to dust and cleaning chemicals.

Tomorrow I will begin to get a daily infusion of saline mixed with potassium (which unfortunately pushes infusion time to 4 hours, as potassium too fast makes me flushed and uncomfortable), and tomorrow we are going to KGH for bloodwork, both arranged by awesome Katie.

Now all I have to worry about is Easter, which has snuck up upon me. I am not at all prepared. I long for a duck with all the trimmings for Sunday supper, but unless someone delivers that in the food delivery service a friend has arranged for us, we are out of luck. I would eat very little, but it won’t feel like Easter.  I’m hoping Friday the kids will help me color eggs, and tomorrow we will get some goodies for the traditional hunt that the kids love. I wonder if chocolate bunnies will go down my gullet without protest!


6 thoughts on “A Mystery Solved

  1. So glad you solved the mystery, and that you are progressing so well. I continue to do my part… thinking wonderful thoughts and praying for you daily. Love to you and your family. Bruce

  2. 10x the dosage!
    I am going to use this story in my teaching about the importance of accuracy and the importance of decimal places!
    May the appetite return!

  3. Wow unbelievable!! I’ve been thinking about you and wondering how things were going at home. I am so glad you found out the problem.. and what a serious problem it was. Well things should be much better…I’m thinking of you all. Happy Easter and don’t worry, it’ll all fall into place.
    I’m finally back home. Saw Lauren in Lombok and she says hello and sends her best wishes. Randy completed the Lombok Audax 200km per day x 2..without any mishaps. He says it was tougher than Bali with the steeper terrain. We all came down with Sea Lice-actually they are thimble jellyfish offspring that burrow under the skin…nasty, itchy little critters..but the snorkeling was awesome. What can I say?
    Take care…you guys are real troopers and so positive..I am hoping for a better appetite and surge in energy. Hang in there.
    Love Bernie

  4. I’m just getting caught up. I’m so glad you were so diligent in pursuing the mystery. Scary. How often does that happen and the patient doesn’t know and something bad happens. The good news is that when your appetite returns you have ten pounds to gain.

  5. Susan, you are a trooper! Thank you for keeping us so informed with your detailed accounts of all that you’re going through. So glad that you were “on the ball” with those pills and i sure hope the pharmacy graciously agrees to pay for the rest of your drugs-there’s no doubt that they know that a lawsuit would cost them a lot more! So happy to know that you’re back home with your kids. Hope you had a beautiful Easter Day! Hang in there girl. Know that you’re in my daily prayers. Love you, Dawn

  6. What a shocker… and thank heavens you are so incredibly on the ball. YIKES!!! I too am just getting caught up on mail after the Spring Break. Hope the Easter celebrations went well !

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