Silent Film, White Blood Cells, and Steak!

Well, the bronch results yielded NO REJECTION…. and , oddly (since we believed me to be re-colonized) NO PSEUDAMONAS bacteria!  That iv “bug juice” musta’ done the trick? I hope so! My fingers were all sore from drawing up 6 viles a day for infusion! Ouch!  Now the iv has been Discontinued, but we were hoping to leave my piccline in just in case we needed it again anytime soon. They are a bugger to get in, and I’m running out of good veins… Those of you who closely know me remember I’ve made friends with the piccline, even got married wearing one hidden beneath lace…  but NOW apparently prednisone can make veins wonky… tomorrow we try and fix it with clot buster. Or pull it.

I have my “three month assessment” the first week of February. This means I will get the boot from the treadmill room. I will miss the community of seeing everyone else listed, and their fabulous support persons, to a one. I may rent a treadmill to get me over the February hump in good shape, but will miss seeing Chya and the gang. I will try and photograph them for you: such amazing physiotherapists.  I am up to lifting five pound weights (arms/legs) and doing 2.2 mph on the treadmill, while talking, etc. It’s a great thing to see the oxygen saturation moniter there reading 100% at times!

Today’s clinic findings: my lung function is stuck at 69% and 1.9 litres. Not bad, but not as good as we’d hoped… yet! The Doc (yet another Doctor today: gone is any continuity) says it can sometimes take up to 6 months to get optimul capacity results, and I had the pneumonia to slow my progress.

I also gained weight because I ATE all weekend, starting Friday when I took an awesome hour-long walk that ended with me consuming a pizza and wings myself.  Special thanks to my husband’s fine cooking,  steroidal hunger and insulin management.  And so, in celebration of… Monday… Tom coerced me to eat out for a change! Off we trundled to Le Select Bistro, a french restaurant which we had our wedding reception at. Tonight I did consume the following; STEAK AND FRITES, and Fois Gras, AND French Bread, salad, and fizzy water, (Tom: red wine), AND Creme Brule AND fresh fruit AND gelato. Wow. FULL.  This was my first time out to a fancy place in a while: I put on my new swank jeans (bought during last week’s shopping spree on Queen west) and best jacket for the event.  And then I felt like a junkie, going down into the basement and shooting up in the pissoire… with insulin!  Cmon… that’s a lot of carbs to account for!!!!

So, speaking of my shopping spree, I took myself to the stores this past week. I got giddy with shopping  adrenoline and brought home: an ipod cover, a new purse (big enough to carry my Diabetes supplies in), jeans ($10 each!)  in my new temporarily teeny size, shirts and bras.  All of this stuff was vastly discounted as Queen West is awash with 75% off sales. I had OODLES, yes, OODLES of fun trying on jeans: musta’ had on 20 pair. I was so excited in the store to be wearing “cute clothes” again that I was jumping up and down. And not out of breath! Hoy!  The bra fitting was particularly fun because I got to show off my scar, but the lady set me up with a very well fitting and comfy sea-foam bra: $12! Yes! I can now be tastily tiny, until such time as I eat my way to a healthy Body Mass Index and have to give my new skinny clothes away.  But seriously, it feels SOOOO GOOOD to have better fitting clothes again, as my old clothes were just TOO BIG and bringing down my self esteem as a result: it made me look thinner!

All this shopping took place during what I later learned was a very risky time for me, as we discovered my White Blood Cell count had gotten very low: to 1.1 in fact.  In any event, it was suggested that I drop some of my anti rejection medications for the time being in order that my white cells recuperate. The numbers/soldiers are starting to climb up again, but I’m advised to stay away from crowds and germs until it’s back to normal. That provided me with the prospect of a long lonely weekend cloistered away from the public germ-pool. And so… to make time fly in my bubble world by asking Mom over. She and Tom and Henry and I made a movie, which I do hope you’ll enjoy here. It is a silent movie, and in keeping with my weekend of eating, is called SING FOR  YOUR SUPPER.

Bronch Redux, Christmas Redux

Well, I got a chance to get stoned again on my good friends Versed and Fentenol. Yes, you guessed it folks, another BRONCH! My eyes crossed again as they were passing the camera down my throat and into my lungs. Then I happened to fall asleep while they were doing the biopsy and then I happened to wake myself up snoring! What a hoot! The Doc was super efficient and there was no gagging. In. Out. Smooth. Doc says it’s looking “better” down there,  though pathology will be another few days.  Could having this procedure ever become routine? It would seem so! Even though it is risky. And speaking of risks, I somewhat accidentally found out that sometimes people become vocally paralyzed at the time of their transplant: can you IMAGINE if this had happened to us? I don’t even want to imagine if that had happened. I find it strange, however, that nobody mentioned this as a risk, especially as I was grilling them pre-surgery about the risks to my throat when they passed the breathing tubes down my throat. Perhaps they were afraid I wouldn’t go ahead with the procedure if I would have known! I like to think that it wouldn’t have stopped me as I was in such dire straits.

Things here returning to more normalcy. I joke about my insulin and blood sugar management that I am “pricked more than a french whore”…

I went to bed last night reciting a list of my favorite foods. If I had another stomach I think I’d fill it some nights. Tom’s cooking is brilliant! I’ve even gained a couple of pounds! Eating is a great hobby: not the least of which was: CHRISTMAS DINNER! Yes, that’s right folks, we finally “had” Christmas. The snow was falling on Sunday as Tom, Henry and I arrived at Mom and Dad’s house. Carols played on the stereo, turkey filled the nostrils, and presents were–at last– opened! It honestly felt like Christmas, minus Jennifer mind you (she’s gone back to Montreal).  This was my first Christmas with new lungs. Wow. We went for a walk with Henry after dinner and it was cold, but no problem because I could keep walking and stay warm. Talk about a Christmas Gift!  Mom had done a beautiful job of the tree, table, presents, roaring fire, etc. Truly a blessed day for us!!! Dad looked so happy to have us there, and Henry looked so happy to be begging at his elbow during supper.

Well, that’s it from me for this installment… in a few short minutes Obama will be sworn in as president after having been elected the day of my lung transplant. Wow. What a time in history!

Haroon’s Hybrid

Today in clinic went well enough. My lung function is slightly below what it was previous to the pneumonia, but at 1.9 litres Dr Haroon is “very relieved” that things are going in the right direction (For those of you following in percentages, I’m at 69%).  She says to trust that I will get better, and I love this: she calls her transplant patients “Hybrids” … She’s right you know,  it took TWO sets of parents to create this body! I shall remember that on Mothers and Fathers day.  The other funny thing was that my phosphate was low, and she said, *and I quote*, “eat lots of junk food” (which is high in phosphate): When does a Doc ever say that?!! I love it!!!

“I Feel Pretty…”

... Alex here. Settling in to being home again. I keep a giant check-list now that starts at 7am and ends at midnight; giving everything from anti rejection pills, to my 6 daily ivs, to insulin shots.  I certainly keep busy, but have been enjoying the odd moment of pure pleasure: singing at the piano, home cooking, a quiet night’s sleep with only the sound of Henry’s snoring to keep me awake… and just today I put on full makeup in an attempt to feel pretty again for the first time in two months! I tried on my new black dress which I bought on-line last summer, but was too out-of-breath pre-transplant to try on. Anyhow, I’m delighted to say playing in my closet was fun today (although a lot of things are too big for me at the moment…) and that the new dress is a hit: not only does it cover my picc-line, but it’s stretchy, so will grow with me as I go.  To compensate for my somewhat empty bra cup, I ate a giant plate of designer pasturized cheese today, and even if the bra is a little loose just now, I still consider it a triumph to be back in an underwire support garment, which is directly over my incision area. Some of the drugs have funny side effects as I’ve mentioned, one of which, I’m pleased to announce is hair growth: my eye lashes have never been so long!!! Ha ha ha. How delightful it is to feel girly again after feeling so sick: being back on oxygen for Christmas was not only depressing for all, but very scary.  Hopefully that is the last time, although we’re told this is all very common in the first months following transplant. I appreciate all your kind words and comments to the blog. It’s good to be home with the boys again.  Will update after Monday’s clinic.

Patience, patient! (and husband): (Wednesday, Jan. 7, 2009)

Well I figured something was up when I hadn’t heard a peep out of Alex via cell phone yesterday. No call, no text, no answer when I called. Then, when I arrived home….no Alex.  I’d been over to the hospital on Monday night and retreived all of her stuff in advance of the move.  But between then and Tuesday morning the news came to Alex that she is not coming home for at least a few more days.  Remember when I wrote that tests had been held up over the Christmas holidays due to the fact that no one was working in the labs?  Well, one of those tests finally got done.  It was a synnergy test, a complicated algorithmic sort of test where a computer figures out which combination of antibiotics works best for Alex.  Due to the fact that Alex has CF she has developed resitance to many drugs. The synnergy study indicated that the combination the doctors guessed and prescribed for home care (in the absence of a real synnergy study) was not quite right.

So you can probably guess where this goes. New and different regimen of very strong antibiotics delivered intravenously for several days.  Hospital stay required so that the doctors can monitor the efficacy of the drug combination.  Alex and Tom very sad that they continue to live in two different worlds. Alex and Tom must remind themselves that this is all for the good and the betterment of Alex’s health and general well-being.

Ye must have patience, patient!

Good News: (Sunday, January 4, 2009)

Just a short post to let you all know that plans are afoot to get Alex home by Tuesday afternoon. The immuno-suppressants (in concert with the antibiotics) seem to have worked for Alex. Soooo…with luck we will get her sprung outta there and back home to convalesce. I’ve just now returned from a nice visit, having brought her some fish and chips and sat with her in the beautiful 4th floor atrium. Her appetite is back, which is really encouraging, as is her sense of humour. She joked about how I’d come for a visit and she’d snoozed through half of it. Actually, while she slept I read a great book (which I’d really purchased for Alex) called The Two Kinds of Decay by Sarah Manguso. It is a memoir of a smart young woman’s battle with a rare chronic affliction. This book will obviously resonate with Alex’s experience. I got it to help her feel not only less alone with her fears, but also to get outside of herself and see how another young person copes with an enormous life-altering challenge. Well worth the read. Hope she likes it too.

Let’s hope the next post you read here will be by Miss Alex herself!

Breathing Easier: (Friday Jan.2, 2009!)

Hi All,

Well, I just returned from the hospital where I have been spending most of our “holiday”. First off, I must apologize to the many of you who have written to the blog or phoned me for updates on Alex’s current progress. I’ve been remiss in my reportage, as it were. Quite frankly, I have felt this current round of Alex’s hospitalization to be very difficult, in that it has had a quite depressing “deja vu” about it, and the fact that it’s obscured the holidays has only added to this humbug feeling.  I must say that all of my positive energy has been going to Alex and only Alex (sure, a little bit for our dog Henry too, lest he become inconsolate) but that the end of the day I’ve not had a lot left to give anyone else (including myself). I am, in two words, burnt out. I really needed a little down time after Alex’s transplant and subsequent return home, and unfortunately this was not to be. Something had to give and I am sad to say, dear reader, it was this blog.

So I will get you up to speed, and hopefully set your minds at ease…

Alex is now off oxygen. She is walking much as she did a couple of weeks post-transplant. She still has a ways to go but the last couple of days have been encouraging. She is undergoing an anti-rejection bolus which will be followed by an antibiotic bolus. She has a picc line in her left arm to deliver the drugs. The high doses of anti-rejection steroids have temporarily given her diabetes, for which she is now receiving insulin (on a sliding scale and on an “as needed” basis). We don’t know if she will require insulin post-hospitalization but it remains a possibility. She has more energy this evening than she has had in the last ten days. Her appetite is coming back as the pneumonia is being treated aggressively. We even managed to have a really fun New Year’s celebration with some Chinese BBQ duck and streamers and horns and Christmas lights strung up around the room. She ate a good-sized dinner and we had a blast bringing in 2009, imagining the good times to come.

But here’s what happened at the end of 2008…

The doctors tell us that it is not uncommon for a Cystic Fibrosis transplant recipient to get opportunistic infection(s). CF had slowly ground Alex’s health down through her life to such a point that she essentially had nothing left to fight with. No arsenal, as it were. Transplant was her only option for survival. Picture a prize fighter who has just defended his title, but had the daylights knocked out of him as he did it. Now picture the prize fighter waking up the next morning and having to defend his title AGAIN. That’s where Alex found herself post-transplant. She was still carrying pseudomonas aeruginosa in her sinuses post-transplant, and this bacteria took advantage of her compromised state and colonized her “new” lungs, giving her double pneumonia. Fortunately, the new lungs have proven strong and with the aid of antibiotic therapy the bacteria has been controlled. But it certainly has been a scary ordeal. Alex was really wiped out by this. She watched all the progress she’d made after her transplant disappear in the matter of days. In fact, for a a few days there she was worse off than before her transplant. It has been very frightening for all of us.

Add to this the fact that the health care system essentially shuts down over the holidays (ie. no tests come back, skeleton staffs, no physiotherapy department to speak of) and you can understand how freaked out we’ve been. More on this in days and weeks to come.

So, basically the holidays are over. The care is becoming more attentive. The tests are being processed so Alex can be treated properly and conclusively. We wait and hope that the steroid anti-rejection bolus doesn’t drop her immune system too low so that it cannot fight the infection. AND we keenly wait the day that we can get Alex back home and healing in her own surroundings. It’s going to be tough on her, in that she has lost some ground. But the doctors are confident that after she gets through this she can get back on track and make up for lost (or rather, down) time.

At this point we are hoping to get her out of there sometime next week (fingers crossed!).  If anything changes I promise to let you all know what’s up. Again, sorry that I’ve not been more on the ball with my writing. I’m gonna try to be a bit more attentive that way. And hey, this by no means is a resolution, eh. Just so you know.