The Last Straw

Okay, technically it’s the last tube, but it is out!

Two weeks ago I had two appointments in Ottawa, back to back. This was inconvenient as it meant overnighting in the capital, something that drew no sympathy from the receptionist who called to tell me about the date change; the surgery for Hickman removal had been Monday July 9, and here she was telling me that could not be possible, as it was for the 10th and at 7:30am. That was not possible, as we’d never get there in time from here unless we overnighted. So we arranged to spend Monday night at someone’s house and go to the regular clinic appointment and then head out early for the 8:30am surgery (which they told me when I got there was actually 9:30… really, we are in the same time zone!).

First of all, what I learned at my clinic appointment was twofold: one was not surprising, that swimming and sunshine were still verboten, and two, definitely a surprise, was about my weight. I was having some concern that I was not gaining it back speedily enough– no, I am not in a hurry, I was just wondering if it was normal to take so long, despite my unhinged and untempered diet. It turned out I was barely approaching my pre-pregnancy weight, which I had been at all my adult life. As it turns out, something about a bone marrow transplant actually “resets” the metabolism (to factory settings, I imagine). So given my normal lifestyle and no chance of future pregnancy, I should expect to reach no more than 110lbs. Now before you start groaning in mock sympathy, you should know that I have a rather small frame and my metabolism suits it. And no, I do not recommend BMT for weight loss! Consider it one of the perks of the many risks faced. But it is a fascinating concept, that the body would know how to do this. The doctors certainly don’t know why this happens, any more than they can explain how cells know where to go in a transplant. Fake moans I am sure will come from you as well when you learn that I must now replace at least half of my wardrobe!

We left that meeting with our next appointment even further apart, at 5 weeks. I will continue to take Acyclovir twice daily, and Septra twice weekly. It has come to my attention that this particular antibiotic is nationally in short supply  (a topic for another blog). I have arranged to get a few more, but I suspect sometime soon we’ll have to switch from Septra to something else until I am off antibiotics completely.

Tuesday morning we headed to Civic Hospital, a different campus in Ottawa, to be “de-cyborgized”, as Pete called it. My Hickman, once literally my lifeline, is now out of me and all that remains is a tiny hole that will close up soon enough. The procedure was simple enough– a 20 minute preparation by a pleasantly chatty nurse, then a five minute extraction of the tube by a brooding and mumbling surgeon who seemed intent on antagonizing the nurse. It was an interesting dynamic of who had the most power in the room. Before the actual “surgery”, I signed a waiver and was told by the surgeon (who did not ever meet my eye) of a list of possible yet unlikely events that might occur as a result.  One was deterioration of the tube, something more possible if it had been in me for several more months. I pictured a worm being pulled out and breaking apart. Eww, right? If that had happened to the tube, which is made of silicon rubber, it would have to be retrieved from the other end, through the urethra, a rather scary and invasive procedure. “But that probably won’t happen to you,” the surgeon mumbled not convincingly, and then he proceeded to numb the area with several pricks from a needle carrying a very effective anesthetic. Now he was free to hack away with a small scalpel at the area. I was completely conscious the whole time, at one point actually conveying to the masked man that I was in some pain. He pricked me again with a needle and went back to it. Seconds later he continued with what I pictured was cutting away the tube. I assumed this brutal treatment was directed at the Hickman, that he would cut it in half and present me with two halves. Instead he held up for me to see, as if it were a newborn, a fully intact tube which surprised me by its length (I had imagined it longer). The doc sutured the hole with one stitch and left the nurse to bandage it and clean up his workspace, something I could tell irked the nurse as this seemed to have been his job before scurrying off to the next patient.

I left feeling, being, freer than I have been in over 5 months.  Home care is now over. My energy level seems to be back to normal. I am able to be out and about for hours without any fatigue, I have not thrown up in 2 weeks, the other night I went out to a gig and had a glass of wine with friends, all on my own! It was fabulous. It’s still unclear if and when I will still experience any GVH symptoms, so we’re not completely out of the woods. But given my progress, we confirmed that it is a good sign that things will continue smoothly. In a few weeks I will be celebrating my half year. Time has been hard to navigate, from my weeks in Ottawa, the summer starting so early it feels like it should be ending when it’s not even half way. Our bodies have a natural rhythm, systems that know how to work to keep us alive and prospering. And an incredible self healing mechanism that will engage as surely as a dandelion will grown in the middle of your sidewalk, no matter what you do to stop it. That is the power of nature.

One last thing I wanted to mention was a meeting that convenes monthly in Kingston of local survivors of transplants or donors. My friend Leann turned me onto this group from a newspaper ad she happened upon. The Transplant Advocate Association is an organization developed to bring together people whose lives have been touched by organ transplant and to develop an awareness of this procedure so that more people sign up to donate. At this, my first meeting, there were no fellow BMTers, but there were at least three double lung transplants! One was a little younger than me and shared her story of surviving cystic fibrosis through a donor’s gift of two matching lungs.  Several things fascinate me about this. There are people in the world, and you may be among them, who selflessly declare, usually through signing a card that comes with a driver’s license, that in the event of their death, their organs may be donated to someone in need.  Some people choose specific organs, but most offer whatever is needed. A deceased relatively undamaged individual is capable of supplying several organs (eyes, liver, kidneys, lungs, stem cells, skin, etc) and the US Department of Health site says that as many as fifty people’s lives can be improved (or, I dare say, saved) from the organs and tissue donated by one single person. Different countries, and regions within them, have different protocols for donation. Surprisingly, and rather embarrassingly, Canada has been rather behind in national donor registries. It wasn’t until 2000 when the need for a national registry was acted upon! The government created the Trillium Registry, now called the Trillium Gift of Life Network, which is an organization designed to plan, promote, coordinate and manage the organ donation system in Ontario. Other provinces have similar set ups but even within a province the system is fractured.  And only last year, the first online registry was created in Manitoba! It is reported that over 4000 people in Canada are on an organ transplant waiting list. How, in this day and age of technology, can such a thing be possible? In 2008, the organization needed to fix this mess was passed on to the efficient and extremely active Canadian Blood Services. Yet the Canadian government offers them less than four million over five years to promote awareness and develop a strategic plan? This is an insult. Did I mention the thousands of people right now waiting for an organ in order to survive? According to the governmental report from 2009, it is mediocre indeed. Why?

Looking globally, and through a religious eye, I discovered that most religions support organ donation as it is considered a donation of life. The one country that stood out is Japan, which in 1968 instituted a 30 year ban on organ donation due to religious reasons and mistrust of Western medical practice. Fortunately, this is starting to change.  Then there is the controversy about organ “harvesting”, most notably in China. David Kilgour is a Canadian former MP (who coincidentally happens to share my birthday!) and advocate for human rights who is spearheading a campaign to draw national attention to the persecution of the Falun Gong in China. Kilgour, and his partner David Matas, won a human rights award for their work with Chinese organ harvesting. Occasionally an article about human organ harvesting becomes newsworthy, but they seem to be outdated so it is unclear, other than the work of Kilgour, how prevalent this horrific practice is internationally.

Now for some good stuff: Helene Campbell is a double lung transplant survivor who recently was made famous on Ellen and the Canadian media for broadcasting information about cystic fibrosis and transplant survivors. Yay, Helene!

So what can I do, I hear you saying! Well, if you’re in Ontario, you can make sure you sign your organ donor card that comes with your Ontario drivers license renewal. Or you can go to the Be a Donor site.  British Columbians can go here or here. This is also the site for other provinces to go to find information about registries.  It seems at first glance that the US system is also scattered across the States, but the US Department of Health site seems to be a good starting point. Countries such as Spain, France, Belgium and Italy are at the top of donor registry lists. If you want to learn more about global trends in this topic you can check out the UK organ donation site.

Meanwhile, the organ lists grow.

Give the gift of life. Donate.


The Disease of the Year?

Greetings, Happy Canada Day and Happy Summer to all!  I see that other parts of the continent are suffering from extreme weather, but in our little neck of the woods it has been absolutely perfect. Something about this part of Ontario, even though we are surrounded by heavy rains, tornadoes and heat waves, protects us from such elemental calamities. This weekend was a good test of how I can manage in full sun– the gazebo is screened and offers great protection and cool breezes from the lake, there are shades on the patio that one needs to follow as the sun moves, and if it is not too wavy, I love the comfort and shade of the docked motor boat so I can supervise the kids dive bombing off the dock. I long to jump in with them, but alas such antics remain taboo for me this year as there are bacteria lurking in lake water that can find any number of entry points into my body.

I was saving this blog for the following week, after my Hickman was to be removed. But recent news events have prompted me again to post this now.  As you may have heard, we lost a prolific female Hollywood director/writer, Nora Ephron. Who didn’t love When Harry Met Sally? She is known for other works as well, and wore many other hats in that entertainment field. You may have also heard about Ms Ephron’s cause of death, attributed to leukemia. What is not as commonly known is that her leukemia was preceded by MDS, as reported by AAMDS.  The New York Times added some more detail but didn’t really put much emphasis on the blood disorder that she suffered from, which is unfortunate as it doesn’t draw as much attention to it as it could have. However, the report was fortunate to have the executive director of AAMDS explain the difference between Nora Ephron’s MDS and that of Robin Roberts (reported in previous blog). In Roberts’ case, it was determined that her MDS was caused by chemo treatments for breast cancer five years ago. In Ephron’s, it was a development that was so complicated it restricted certain treatments, namely a bone marrow transplant, and that in fact it was her damaged immune system that made her vulnerable to pneumonia that ultimately led to her death. This is indicative of how complex bone marrow diseases can be, and how important it is to learn more about them and draw attention to them for funding and research.  What I was hoping might result from Robin Roberts’ case has in fact happened, and that is that since she announced her predicament, additions to the bone marrow registry at Be the Match spiked significantly!  And while I have your attention, I should mention that the Canadian marrow registry One Match is asking for specific donations to support their pool for “ethnic males 17-35”. If you or someone you know fits this category, I strongly encourage you to go to the website to find out how to help.

As for me, my greatest success has been the end of Tacrolimus, the anti-rejection drug (second week). Does this mean I can put grapefruit back in my diet? I miss it so much!! Even in reduced strength, Tacro had been creating some kind of havoc on my digestive system, and even now on occasion I have a bout that takes me to the bathroom or omnipresent bucket in a flash. I would say such an event happens every 7-10 days, usually because I have not been paying close enough attention. In fact, I have been a little cavalier about what I put in my body these days, preferring gustatory satisfaction over nutrition. I am still underweight, so I don’t see much harm in this, and I have begun to tone up my body with weekly yoga (I know, it’s not enough, but it’s something!) and three times a week I put on some tunes to motivate me to work with my free weights. So some progress is being made. I continue to take magnesium and potassium and have added vitamin C to my regimen. Next week I will be losing my Hickman at last! Apparently it is not as simple a procedure as I thought, as it took some time to get it organized with surgeons at another clinic on the Ottawa hospital campus. It requires an overnight in Ottawa, however, as it is scheduled for 8:30am, the latest possible time.  My regular clinic appointment is the day before, later in the afternoon, so the scheduling is about as convenient as it could be, otherwise we might have had to make two trips to Ottawa. But it does mean an overnight, and we don’t know enough people in the area to make this easy for us. We have a tip or two but if they don’t pan out, then a hotel it will be.

Yay, the end of Tacro! Grapefruit, anyone? (NB: Not wishing to further patronize the pharmacy that was poisoning me, and to save money, we discovered the advantage of the COSTCO pharmacy in Kingston.)

Just for fun, a fabulous double rainbow over our house last week, reminding us how blessed we are!