About 5 years ago, my lung function started to deteriorate rapidly. There seemed no particular reason for it - my lungs had just decided that after many years of relatively problem-free adult living, it was time to give me a kick in the butt and remind me of the difficult times I’d had when I was younger. They had endured enough infections and scarring, and apparently it was time for life to be "all about them".
We had a small lease cabin in the woods around that time, at a high elevation. When my fingers turned blue on arriving there, we knew that trouble was brewing, and sadly gave the cabin up. Around the same time, I experienced some episodes of haemoptysis (bleeding from the lungs). One of these was quite major - this type of a bleed is not just a little bit of blood working its way up your throat to dribble out your mouth. Instead, it fires forcefully and uncontrollably in large volumes from your mouth (you’d think you were in an Exorcist movie). After the major episode, I entered hospital for the day to have Bronchial Artery Embolization done. Basically, this involves sending a camera image from your bronchial arteries to show areas of weakened bronchial walls - a substance akin to mini Styrofoam balls is then injected which float to those weakened areas - much like a mud patch on an adobe hut. Oddly, the access point for this surgery is at your groin - perhaps to give you humility.
At my local CF Clinic, I was asked if I had ever considered a lung transplant. I was thrilled to be asked - I had no idea that they would consider me at my "advanced years". I had thought that my "best before" date had long since expired, and was quite pleased to find that I was just being marked down rather than being outright tossed off the shelf. On June 10, 2006 I was scheduled to begin my pre-transplant workup as soon as a hospital bed was available.
The tests came fast and furious and included Echocardiogram, EKG, X-Rays of chest and spine, CT scan, walk tests, Pulmonary Function, abdominal ultrasound, Carotid Doppler, Bone Densitometry, Lung Perfusion, 24 hr Esophageal PH Monitoring, Right Heart Catheterization, MIBI Scan, Cardiopulmonary Exercise Test, and full lab tests. These were all to ascertain that I was sick enough for transplant, yet healthy enough to survive the surgery. Also, they (thankfully) proved that I had no other underlying complications (heart disease, cancer, etc.) which would have excluded me from transplant. Once these tests were completed and judged favourable, I had appointments with various people at BC Transplant - Social Worker (to make sure I had a support network for before and after transplant) and Clinical Dietitian (to make sure I was eating properly and had a body mass index sufficient to withstand the shock of surgery and subsequent weight loss). I just squeaked over the line for having enough meat on my skinny frame!. I also had an Anesthetic Consultation and met with the Surgical Director who would perform the surgery. Last but not least, I met with the Clinical Psychologist, who made it clear that no matter what the physical tests showed, if he thought I was mentally incompetent, I would not be placed on the transplant list. My tongue bled from the effort of holding back smart-ass answers to his questions...
Five months later, on November 1st, I was officially placed on the waiting list for a bilateral lung transplant. In the meantime, I had been put on oxygen 24 hours a day. I was told that the average waiting time was 2 years. In my head, I decided that 1 year was more than enough and I settled in for the wait. The following August, I had a "false alarm" - I got a call that some donor lungs were being checked out and not to leave the phone for a few hours. When the next call came, it turned out that the lungs were not a good enough match. I said "Don't worry about it - I'll wait for the perfect match!"
The one year mark came and went. Psychologically, the wait became challenging. My health was deteriorating - I couldn't get off the couch and walk across the room without panting for breath. The effort of having a shower would leave me collapsed across the bed for half an hour while I recovered. I was sick of dragging oxygen tubing around the house, and was fed up with the constant puffing of the oxygen concentrator. Physically, I had no ambition nor strength to do any work around the house and felt more and more useless. The only thing that kept my spirits up was my wonderful network of friends and family who never chastised me for being such a lazy-assed lump.
Then finally, 15 months, 7 days and 18 hours after being listed, the call came.
Monday, April 28, 2008
The Preamble...
The Call Comes - Friday Feb. 8/08
“Hello, Larry?”
I finally am on my way to the ICU, en route to the OR. A porter has whisked me out of the 12th floor room with no advance notice while the family scrambles to gather gear and follow. As we pass through the doorway of the ICU, said porter informs the family that “Oh, no one past this point except for the patient”. Now, understand that we were given no warning of this rapid trip so have not had a chance for final words before the operation. Needless to say, this causes a bit of an uproar which the dense porter was unwilling to listen to, and I started up off of the gurney prepared to go back outside. Hearing the commotion, cooler nursing heads inside the ICU prevailed and the family was allowed in.
9:30 p.m.: I have only been out of surgery for a couple of hours, and Dr. Yee has planned to leave me on the ventilator for at least another 10 hours. Bear in mind that at this point, he hadn’t yet come to really know me, nor had he been coached by any of my family about what they perceive (falsely, I’m sure) to be my stubborn streak. Apparently I started fighting the restraints and as they slowly brought me out of the anaesthetic, all I wanted was to get that rotten tube out of my throat! I had the feeling of needing to cough and as I couldn’t speak, attempted to draw letters in the air with my finger that spelled “Cough”, quite pleased with myself and thinking that this was a very bright thing to do. Nobody seemed to be taking any notice, and I remember thinking “Good grief, people, don’t just stand around yacking – I’m supposed to be the center of attention - look at ME!” Finally Cheryl noticed my air scribbles and figured out that I wanted to cough. Thankfully, Dr. Yee trusted me and obliged by pulling out the ventilator tube. The experience of coming out of life-threatening surgery was not as depicted in the movies – I saw neither a bright light, nor a dark tunnel. I do distinctly remember that when the tube was pulled out a man kept on repeating in a loud voice: “Breathe, Larry, BREATHE!” – an occurrence that I was later assured never happened! I could barely fight me eyes open enough to see my family come to my side one by one, speak a few words and hold my hand. By this time my sister Linda, brother in law Brian and niece Kim had also arrived to take in the festivities.
Dry as the Desert - Day 2
My left eye is swollen almost shut and will remain that way for days.
Oh yeah, and I'm pretty much stoned...
A physiotherapist arrives and, 18 hours after the completion of surgery, gets me standing beside the bed (thankfully with her support) and then sitting in a chair. What’s a physiotherapist doing hunting me down in ICU anyway? Can’t a guy get a break? I would have been just as pleased to remain lying in bed, hugging my pillow, where I was somewhat comfortable. Oh well, I know that the faster I’m up and moving around, the faster the anaesthetic will work through my system. My body will have a better chance of a quicker recovery if I “cowboy up” and get on with it.
"Giddyup"
Mentally, moments of clarity seem rather far apart. Much of what happens has to be related to me afterwards… often quite a few times before it registers. Apparently I am a good source of humour for certain family visitors. Did I mention good meds?
Wall of Water - Day 3
Busy day today! I get moved to Room #220 on 12A. Because we CF lung-transplant-types are special, I get a private room. Here, as everywhere else, they suffer from overcrowding and throughout my stay there is usually at least one patient in the hallway, so I’m very fortunate. I have a large window, although the view is nothing spectacular – I’m looking south as
During surgery, I had 2 chest tubes inserted in each side for a total of four to drain fluid from my chest cavity. I get my first one out today, along with the central line in my neck (for some unknown reason called a “swan”). I have 1 peripheral IV line removed altogether, and one other replaced. My physiotherapist assists me for my first stroll down the hallway and back, complete with 3 still-draining chest tubes, IV pump and paraphernalia, and the ubiquitous Bag-O-Pee.
At this point I have not eaten for 72 hours. At dinner time, my water restriction is removed at long last, and I get a dinner of clear broth, a tetra-pack of Boost, and 4 little squares of Cherry Jello. Hard though it might be to believe, that was one of my best dinners ever – to have something hot, wet and flavourful flowing down my throat was sublime. After dinner, Dr. Yee stops in for a check. He looks at the naso-gastric tube, says “you don’t still need that”, and promptly reaches up and pulls it out! Finally. It was an unpleasant thing (having it in, not pulling it out).
There is a whole team of medical professionals working with me – surgeon, surgical fellows, surgical residents, 2 pulmonary respirologists, medical interns, nurses, and nursing assistants. One of the head docs stops in to say that Day 3 can sometimes be the end of the “Good Times Euphoria” and not to be surprised if something unforeseen crops up.
"X" Marks the Spot - Day 4
Apparently the mention of things unforeseen was prophetic. I was to have had 2 chest tubes pulled out early this morning, and in preparation various people have examined the lines and the readings on the vacuum system they are attached to. During this exercise, black “X’s” have been placed on the tubes to show which ones are to come out. However, when it is time for the procedure, there is confusion over whether the “X” means “take me out” or “leave me in”. Great consultation and mulling-about ensues with the result that portable in-room x-rays are called for to be on the safe side.
Meanwhile, with all the commotion I haven’t been able to wash (yuck!) which I am in dire need of. Also, the room traffic seems to have scared away the meal-delivery people, and breakfast is a no-show. By the time the x-ray results come back, it is determined that there is still a bit of an air leak happening, and the removal will have to wait another day.
Since my room arrival, the nurses have desperately tried to feed me a lovely clear red capsule. As I never accept any meds at face value without questioning what they are and what they are for, I know that they are to get my bowel functions, um, “flowing” again. As someone with CF, I find this quite comical, as it is really not a usual problem for us. So, each time I have refused to take it, convinced that everything will… work itself out, if you get my drift. Most of the nurses are excellent as far as post-surgical care goes, but a little shy on CF knowledge as this really is not a CF ward, so they’re not as convinced as I. We struck a deal that we’d try it my way and if it didn’t work, my penance would be to receive something more volatile than the little red capsule. So, just to spite them, I manage to have my first post-surgical bowel movement this afternoon. (Aren’t you glad you started reading this blog? No conversation is off-limits!)
Patrolling the Halls - Day 5
I manage to get 2 of the chest tubes pulled this morning. They do this in my room with a bit of local anaesthetic. One of the many wall switches controls a light over my bed referred to in some literature as an examination light. It is so brilliant that is more aptly called by those in-the-know as the Interrogation Light. With said Interrogation Light at full throttle: a couple’a snips, a healthy yank, a stitch or two and that’s that.
The diabetic counselor (which is not to say that the counselor is diabetic, but rather the counselor that does diabetic training) visited today to train me in how to administer my own insulin shots. Turns out not to be a big deal at all – there’s this cool little Novopen dealy-bob that makes it pretty simple.
I’ve been walking in the hall with Bill, the RT aide, who has me wear an O2 saturation monitor (also measures heart rate) just to be sure that I won’t keel over on him mid-stride. He’s pleased with my progress, and says I’m not walking so much like a penguin any more. I’m surrounded by comedians. When I get back to my room, my oxygen sats are at 99%, and my heart rate is 110. The HR may seem high, but as I was 130 at rest pre-transplant I’m very, very pleased. This is when it really hits me about how fortunate I am to be going through a fast recovery. Many others before me have had a much tougher time, some spending weeks just in the ICU. Pretty sobering.
Blushing Red - Day 7
Valentines Day. To celebrate, Nurse Sarah takes my catheter out! This is the exciting one (the urinary catheter). The curtain is closed across the doorway, my frock is unceremoniously drawn up practically to my armpits and the Interrogation Light is beaming with glee down upon my privates. Now, Sarah is no toothless hag by any means. She is young and sweet, which makes my embarrassment even more acute. By the time she yanks (yes men, gasp and shudder along with me here…) the catheter out, I have no bashfulness left. There is just nothing else that could equate with this particular procedure!
Since I left the ICU, the docs have been gradually weaning me down from the intravenous pain medication delivered via the epidural. Today, they have the nurses remove my last chest tube (hurray!) and then the epidural itself. This now leaves me strictly on oral pain meds (narcotics). Over the last few days, the nurses would ask me how my pain level was, on a scale of one to ten. I dunno – I have no idea what a “10” would be, as I’ve been fortunate enough so far in life not to have experienced much in the way of what I consider to be serious pain. So, I pick a number and they oblige with what they believe to be an appropriate pill. Soon, I am able to just tell them how many milligrams I want, and when. I’m well within the “boundaries” of appropriate medical practice, so they’re not worried. I, on the other hand, am anxious to get off the narcotics as soon as possible.
Dr. Yee pops in and is pleased enough with my progress to tell me I can probably go home next Friday. Imagine! Only 2 weeks in hospital? Can it be?
Oh, and that night? I find out what pain is…..
Rumble in Room #220 - Day 8
This morning, one of my favourite respirologists arrives and I talk it over with her. Today, I can distinctly feel a rhythmic vibration (playing in three different octaves) within my chest every time I breathe in or out, and by now I am quite worried about it. Turns out that it is a “pleural rub”, which is common in newbie transplantees and is caused by the lung rubbing against the chest wall. Normally there is a fluid lining which acts as a lubricant between the lung and the wall, but my fresh fluid to go with my fresh new lungs has not developed yet. I am very relieved to know that it is nothing serious and that it will go away (about 4 weeks later!).
Cheryl arrives after this visit, and washes my back for me. As I haven’t yet been able to raise my arms over my head with any amount of success, she also does a nice thorough hair wash… heaven. Today I manage two full circles of the ward, 3 half-circles later, and two trips to the elevator! Whoo-ee! I’ll be marathon-ing in no time…
Sleeping at night is very difficult. Tuning the pain meds and finding a comfortable position in bed turns out to be half science and half art. I’m probably averaging about 3 total hours of sleep at night. I spend a lot of time in the semi-darkness practicing deep breaths and silently giving thanks that I am actually here. I wonder who my donor was… how old? Male or Female? Why did they die? How is the family coping? It is very difficult to reconcile the fact that while my family is rejoicing, another is in mourning. How can I ever thank the family? Where will I find the words? Everything is kept very confidential with regard to donor & recipient, but I will be writing an “anonymous” letter which BC Transplant will pass on to the family. I hope that in time they will respond, and that my letter will not bring up sad memories and wound them further.
The Executive Suite - Day 9
To my right, BC Place Stadium dome.
North Shore mountains in background.
This is a better view than most 5-star hotel rooms. I’m not complaining about the change of rooms now! On occasion, I also get to see the Air Ambulance arrive or take off. It lands on a roof deck roughly 4 floors below mine. I watch people and equipment being transported, but never did see anyone carrying a cooler full of donor organs!
Now, I have no complaints about my medical care at all, but it has become quickly apparent that not only is there an “A” side and a “B” side to the floor, but there is also an “A” team and a “B” team within the nursing staff. The “A” side gets the most serious patients, and those just discharged from ICU, so therefore requires the more astute staff. The “B” side of the floor is for those patients who are, or who have become, less critical, so perhaps there’s a little more “give” on training levels? I’m not too concerned, as I’m not shy about saying “No” to a nurse regarding a request that I feel is unreasonable. I am quite pleased to find out that Rosemary is my nurse tonight, so obviously my “A” nurses are scheduled occasionally on the “B” side. I have a favourite “top three” who are simply outstanding. No names mentioned, of course.
STAT! - Day 10
They can examine anything they wish while they’re in there – including looking for holes (!) and checking the connections. Just as long as they don’t find a leftover hose clamp… They can also take a bit of tissue for biopsy. When they brought me back around I can remember the doc standing at the foot of the gurney telling me what she saw. Unfortunately, all I absorbed was the fact that her lips were moving, but had no clue what she said! Took me a long time to recover – supposed to be about 1.5 hours, but easily took me 4 – I quaked from head to toe in bed as though I was in an ice storm. Still feverish – what a crappy day. They’ve changed up my meds again, and are trying to control the fever with Tylenol. The pain between my shoulder blades is determined to be nerve pain, and I’m given a new, non-narcotic pain med for that. The surgery entailed slicing through the nerve bundle when they opened my chest. As nerves regenerate very slowly, I’m told that I may continue to have pain and require this particular med for a year or longer.
Another Chest Tube - Day 11
Inhaling a nebulized dose of amphotericin, a particularly rude-tasting antibiotic
My haemoglobin levels have dropped and I’m told that this means I will need a blood transfusion tonight. This is yet one more side effect of the anti-rejection drugs. I am not at all pleased at the thought of a transfusion. When Allisan asks me why, I tell her that the thought of some else’s blood dripping into me just freaks me out, to which she gently replies “Dad. What about the new lungs in your body?” Oh, yeah. If you put it that way…
Whaddya Mean, No Sushi? - Day 12
Horrid night again. Had lots of pain from the new chest tube site in addition to the “normal” pain. Fever was up and down and my sheets were soaked from sweat again. I had to give in at 3 a.m. and call the nurse to double up on the pain meds. The doctors and nurses all tell me that the best road to recovery means not having pain, so to take all the pain meds I need, but I find it difficult to comply. Narcotics are fun and all, but I’ve now had that fun and don’t want anything more to do with them. I finally slept a couple of hours, and woke to a normal temp and vitals. My haemoglobin level, thanks to the transfusion, has come up just enough that the doc says it’s OK, and it should climb on it’s own from here.
The dietitian visits with a reminder that I can no longer have grapefruit or grapefruit juice – ever. I knew this, even though I love grapefruit. It inhibits an enzyme which aids the absorption of the anti-rejection meds (as do Pomelos and Seville Oranges). She also mentions, kind of off-handedly, not to have raw fish either. WHAT? As in sushi? Wait a minute, nobody told me that, and it’s too late now to call the deal off…. After some discussion and gentle persuasion, she concedes that it’s a safety precaution for the first year or so, but to use my discretion and only eat where I am convinced of cleanliness and appropriately prepared fish. Whew. There are a ton of things that I’m going to have to remember are now unsafe for me. Little things like working in the garden – bacteria in the soil which a “normal” immune system defends against is something quite dangerous now for me. I’m going to find it hard not to work in the garden once I’m feeling well again, so I may be relegated to scurrying about with mask and rubber gloves in the twilight so the neighbours can’t see me.
Speedwalker - Day 13
Balloons from work.
Mr. Happy Face can be a bit frightening in the middle of the night.
Today I started doing consecutive full laps around both “A” and “B” wards without needing to stop in between. Hoo-rah! (in his best Marine voice)
Two weeks! - Day 14
2 week mark!
The only plastic contrivance still attached to me is IV tubing. I will continue to be flooded with antibiotic cocktails as a precaution until I’m discharged. I think I’m on my sixth type of antibiotic so far. Looks like one more week before I break free.
Street Clothes - Day 15
On the down side, today I have a wheeze in my chest, which I’m told not to worry about. Easy for them to say.
On the plus side, now that all tubes are removed from my chest, I can put on jammies and street clothes! No more wind blowing up my backside from those silly gowns! Now, I’m starting to feel more normal. Which is to say, as normal as I ever am.
Feelin' Good, Baby - Day 16
Had a good night. I’m still foggy-headed (what else is new, you ask?) and at this point I’ve no idea which drugs to blame. I’ll be glad when that is past.
I ventured downstairs to the lobby for the first time and walked around, maneuvering alongside my IV pole like those loser patients you see in hospitals…. Went to the coffee shop, sat in a sunny window and treated myself to a lovely mocha with whipped cream (blood sugars be damned!) while I watched the outside world go by. Mentally, this is a huge boost as it feels like a few more steps to freedom. The exercise did some good, as when I got back to my room I hacked up a bronchoscopy leftover and ta-da! The wheeze is gone! Hey, if you’re gonna get grossed out you should never have started reading…
That evening, Dr. Yee stops in with his video camera. He is going out of town to speak to a CF chapter about lung transplantation, and has asked me to speak for a couple of minutes about my experience so that he can share it with the chapter. The 2 minutes turns into 10 as he asks me questions. The combination of the fresh rawness of my experience, together with the prednisone (which can make me choke up at a moment’s notice), makes it the most difficult speaking engagement I’ve had. I’m glad I’ve done it though, and by all later accounts it was well-received.
What a Blowhard - Day 17
Went on the treadmill for the first time, and managed to do 6 minutes at 1.2 mph – I had no idea that the machine could go that slow! They won’t let me try faster yet… maybe next time. Afterwards, I have my first spirometry test (a breathing test that measures air flow in various parts of the lungs and bases the results against a “normal” person). The literature says that it will take a year to gain whatever is destined to be my full lung function – whether that destiny is 50% of normal or 100% of normal. With my “old” lungs before transplant, one of the most important readings shows 21% function – my first post-transplant reading shows 92%! And it’s only supposed to get better! Boggles my mind.
Blood Sugar Hell - Day 18
Today’s nurse (one of the top 3 “A” team) de-accesses my IVAD for me (through which I have finally been getting my IV treatment for the last little while) so that I can have my first shower. Yes, that’s right, first shower 18 days after surgery – bliss! Sponge baths just don’t cut it.
With Sandra, an angel disguised as a nurse.
Sandra also removes the stitches from my first four chest tubes (leaving only the stitches from the last one), and my IVAD is re-accessed.
Another Bronch - Day 19
Another bronchoscopy is scheduled for mid morning, just for a little look-see to make sure nothing untoward is going on, and that there are no more surprises lurking in my lobes. Early in the morning, I am once again hypoglycemic (although dosages are now straightened out, so this is presumably a “left-over” of the insulin OD’ing episode) and have some orange juice and crackers to bring the blood sugar levels back up.
Around 10:00 I am wheeled down to the “Bronchoscopy Theatre”. I get the local anaesthetic, my throat is nicely frozen, and the attendant is poised with syringe in hand to give me the happy-time drug when she off-handedly mentions to the doctor that I had orange juice and crackers earlier. The doctor, incredulous, looks at me and says “Really? Then you can’t have a bronchoscopy! If you aspirate during the procedure, it’s game over – there’s nothing I would be able to do!” At first I feel guilty about being unaware of this little tidbit of knowledge, but I get over it when I think about how many medical people upstairs new about it and never mentioned the potential danger. At least I know for next time!
Cleaning Up Loose Ends - Day 20
Today, the bronchoscopy goes ahead as scheduled. Some hours afterwards, I’m asked if I would like to see the pictures… hell ya! I also get to see a matching picture from the last bronch, which to my untrained eye looks pretty black and ugly. Today’s picture, by contrast, is pink and sweet. This proves to be the pictures of the bronchial connection of the lungs – the black and ugly bits are what I hacked up earlier!
The stitches from my last chest tube are removed, and I plead my case to also have the IV disconnected as well. Unfortunately, to no avail – tomorrow will be the day for that.
I'm Out'a Here!
I pack my bags, put shoes on my feet for the first time in 3 weeks, and take the cards and pictures off of my bulletin board. I have time to reflect on how glad I am to have such a great family and so many friends. Since I was admitted, I’ve had numerous visitors, cards, phone calls, and constant news of supportive emails and Facebook messages. I appreciate it all – they are what have kept me going both during the wait pre-transplant, and my stay in hospital post-transplant. My bosses at Pacific Bindery continue to bend over backwards with their support to accommodate my needs.
I have learned that I am one of the oldest, if not THE oldest, CF adult to receive a lung transplant in B.C.. My age was apparently a topic of consideration at BC Transplant before my acceptance into the program. I am pleased to have proven their judgement correct, and hope that I may have smoothed the entry for other CF adults of my generation (although sadly there aren’t many still around).
I have many other things to be grateful for as well – the whole medical team that has helped me, Vancouver General Hospital, living in B.C. where the surgical costs are covered, all the people at BC Transplant, the CF Clinic at St. Paul’s that have got me to this point, and it couldn’t have happened without my donor and their family. I’ll be eternally grateful to them for giving me their precious gift which is allowing me a second chance at life.
Matt, Me, Dr. Yee, Allisan, & Cheryl