With a Little Help From My Friends

I can’t imagine someone who is ill and is looking at a long recovery who doesn’t have a support system. Such a system is created for these unfortunate few, the elderly, the homeless, the destitute, by private and public services provided by caretakers and hospital staff. I’ve seen such people, and it breaks my heart. I wonder about the circumstances that they don’t have family or friends to help support them. There are buses that shuttle patients to and fro for treatments, nurses who do home care for a few hours a day. But not everyone has family or friends to help when help is needed. For this reason I count myself to be particularly fortunate because I have the support I need coming from so many directions: friends, family and even strangers, as well as a crack medical team.

I would like to thank some of these people now for their kindness and caring:

* the Wolfe Island community and especially Kayo for organizing bi-weekly meals for our family to relieve Pete’s already heavy burden as professional consultant/PhD student/house husband

* my fabulous and stylish neighbours, even in robes on an early Saturday morning, for letting me know I can call on them for anything

* my other fabulous neighbours whose generosity seems to have no bounds– yesterday I received as a gift a longed for SPF shirt all the way from Japan!

* our musician extraordinaire who has loaned me Willie Nelson’s magical healing hat (see picture below of me soaking up Willie’s vibes)

* other friends who drop off, drop by, rescue stolen bicycles, watch the kids when we are away at an appointment

* supportive emails from people I barely, if at all, know, as well as from those we know well and are thousands of miles away

* family that are able to help us financially as Pete struggles to find work through this period

All of these things help to make my road to health easier, and family logistics smoother.

Thank you, thank you, thank you!


Better Days

As the days coast by, I realize I am slowly, and I hope surely, getting stronger.  I was still struggling with food, and getting quite despondent, when suddenly something happened. Either the Tacro miraculously found its equilibrium, my body had excreted a substantial amount of toxins with the extra hydration or the vitamin D and fish oil kick started things. I decided I wasn’t going to wait anymore for a professional to tell me whether or not those supplements were OK. Besides, I am a professional myself! And the head pharmacist on my team (not involved in the Tacro fiasco) was straight with me months ago when he said then, later, but not yet. So now is later, and I can feel my body starving for oils and getting hormones balanced again. My skin especially, as it is beginning to peel from the irradiation I had months ago. It looks horrid. I assume they will approve the D vitamin anyway since I am to stay out of the sun for a year, so I had no qualms with that. I am also taking probiotics to kick my gut back into shape, and I’m not embarrassed to say, as a new mom would of their newborn, that I had my first real BM yesterday and it continues today. So something has shifted, indeed. My appetite is getting better, though some foods still taste about 60-70% normal, while others are just fine. I can now add shrimp to that list, and beef, and granola bars! What this means is that my spirits and energy are UP!

Yesterday, the whole family ventured into town. We had to go late in the afternoon because I was getting two infusions at once, saline and magnesium, and they required four hours in total. Once the Mg was done, I strapped the portable pump to my waist (remember those fanny packs?) and off we went. I was on the hunt for SPF or sun protection clothing without having to order from the US or Australia, and there was a rumor a store in Kingston carried some. When I called that morning to find out, however, I discovered a private home with a frustrated owner who would prefer not to receive ten calls a day about this business that apparently went under and didn’t take their number with them. So my next options are Ottawa and Brockville, which we will go for on Tuesday.  This left us with only two errands, getting bigger clothes for Skyler who is having a growth spurt, and redeeming his gift card from ToysRUs. We had success in both areas; I picked up a wide brimmed visor for $2 and a wide brimmed flowered hat for $3, plus a pair of slip on shoes which I love because I hate fussing getting my feet into shoes. Even though the store was pretty crowded (it was Saturday, after all) I didn’t feel endangered in any way and constantly used my portable sanitizer.

By now we were hungry, so we headed to our favorite hole in the wall, the Wok In, because I had my heart set on #4: Vietnamese rice noodles with delicious sauce and spring rolls that Jessie and I would share.

Somehow we ended up with an extra dish that became my lunch today, once Pete removed the hot sauce, and I am proud to report that I had a load of rice and three whole shrimp! This doesn’t sound like much, but for me it is a triumph as I could not tolerate shrimp a few weeks ago. Fabulous as the food is at the Wok In, it is slow, run by a mom and pop who are constantly on the move and fussing over the hot stoves and fresh ingredients. As usual we judged how long things would take in relation to the ferry schedule. We arrived at 5pm (the ferry leaves at 6), but everyone knows you need more than an hour there, yet somehow the take outs always get priority… Then Jessie piped up, hey, it’s Saturday! We don’t need to rush! So we all agreed with her wisdom which Pete and I felt should be rewarded with some White Mountain Ice Cream on the way home. We all had tiny amounts, but even so, I was able to happily eat all of mine! Go, calories, whatever you are!

I should mention that as of yet, we have not heard a peep from the pharmacy in Ottawa, which is distressing and disappointing. Pete wrote a letter to the head, explaining the trials I had gone through because of their error, which includes the daily magnesium and potassium infusions to combat fatigue and nausea. Trials that not only affected me physically but also mentally and emotionally. Ever since hearing this was to be my “honeymoon period”, I’ve been waiting for things to get easier, and it’s taken this long to get even close. How many weeks of recovery have been wasted? He also pointed out that others have suggested a law suit, which we will not threaten but did mention.  Mostly we would like some kind of response, some compassion, perhaps asking how I am doing now, or if there is anything they can do to make things better for me, or if there is some possibility of us helping them develop a better policy to avoid such future mistakes.  But we’ve heard nothing at all. If this has happened before, were any changes made or was it ignored? Who knows? Something has to change before someone else gets hurt. So we got fed up and faxed the clinic yesterday. We’ll see what develops.

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!