awww, thanks, Debbie
you've been there since day one, and i really appreciate it
something's going to work
you know when you've been waiting and waiting and waiting and waiting for something?
and then, all of a sudden, it's right in your face?
that's how this is going to be
we're going to have a solution!

encouraging news. the hospital called the unit on wednesday. Andrew has been moved farther up the transplant list because of his internal bleeding.
it's still not likely that he'll ever reach the top of that list {unless he goes into a coma and they announce that he has maybe weeks to live}, but st. mike's is trying everything and i laud them for that.

~hugs~ thanks, Debbie

Andrew and i went to st. mike's today.
his hemoglobin is up to eighty-nine from eighty-two. yay!
his fev1 is up to seventy-one from sixty-three. yay!
he has an ongoing requisition for bloodwork that he can take to a local lab so that we don't have to drive to st. mike's every week for bloodwork. yay!
as long as his hemoglobin stays stable for a while, we won't have to go to the CF clinic until october fifth, however, we'll be back to the hospital for GI next week.
ultimately, Andrew will develop more bleeds and will have to be scoped and lasered again, until his transplant, but a little peace would be appreciated.
"R" and "M" have selflessly come forward to donate to Andrew, so we have hope!

the unit called this morning and asked me to take him to emerge. his chest had been tight over the weekend and so he left work. his anxiety symptoms historically have been atypical, whereas that tight feeling in the chest is very typical of anxiety. he told me at the hospital that he was afraid that Andrew's bleeds would kill him, but i said, no, that's not going to happen. st. mike's is working very hard to keep his hemoglobin out of the danger zone. these bleeds are just a pain in the ass. he said that right away his heart felt better and he joked that he was ready to go home.
they had already given him an ECG and put the "hardware" into his hand for an IV, just in case. i left him wearing a deliciously attractive hospital gown, waiting for the doctor. i couldn't wait any longer because i had to get Andrew to his hospital.
i told the unit to make sure that he told the doctor that he had anxiety disorder and about the stress of waiting for Andrew's transplant. i should have reminded him to also mention the conflicting reports he got about his heart from STUPID toronto general {someday, i'm going to egg that place}. i hope you'll all come running down to post bail for me.
i told him to accept anything that the doctor offered him regarding his heart {chest x-ray, electrocardiogram, stress echo, nuclear echo, appointment with the cardiologist}, even though i think that the cause of this recent problem is anxiety.
i left a message for the unit, asking him to call me and let me know how he made out, but i haven't heard from him. when i dropped Andrew off, i asked him to tell the unit to call me. nothing. i'll likely call credit valley hospital in a bit, if i haven't heard from him and see if he were admitted.

two hours later.....
the unit showed up. his ECG at credit valley showed a significant anomaly. they admitted him, but said that he wouldn't be able to see the cardiologist until tomorrow, as he had gone home. his retarded doctor {some dickwad from a walk-in} sent his dickwad wife, who is allegedly an internist, to see the unit.
the unit decided to leave the hospital. he's going to see his "doctor" tomorrow and see if the dude can recommend a cadiologist. but i don't trust this alleged doctor, whom i think got his medical degree from one of those colleges listed on the back of a match book. "D", you have done SO much for us already, but i'm going to beg a favour of you. could you possibly set the unit up with a cardiologist at st. mike's? we would really appreciate it.
next week, when i'll be on holidays, i'm going to draft an email to the CEO of toronto general, and CC it to whomever i can think of. maybe the members of the board of directors. and tell him about the misleading and the misinformation and the lack of communication with his hospital.
both dr. "T" and dr. "A" of st. mike's have said that they don't have a communication problem with the lung transplant people at toronto general, just the liver people, so obviously, there's a problem that NEEDS TO BE FIXED!

i took the unit to trillium yesterday because "D" said that they have excellent cardiologists there. we arrived at about eight pm. the unit had blood work and an ECG, then later, a chest x-ray. the waiting room was packed and hoardes of people streamed in as we waited. the tightness in the unit's chest came and went. as of yesterday, it had moved to a spot perhaps a hand print above his heart. sometimes he had shortness of breath, but usually did not. no fever. tests of cardiac enzymes, taken several hours apart will show if there has been damage done to the heart tissue {ie, heart attack}, and so far, those done at credit valley on tuesday and at trillium yesterday were negative, which is great news.
we were lucky to sit with a gentleman named "N" while we waited in emerge. he had a great sense of humour and we all found things to laugh about, stories to tell. sometimes we snorted with laughter to the point that i thought the security guard was going to toss us out. then the unit's tightness would return and he'd be bent over.
finally, at perhaps two am, i asked the nurse how many people were to be seen before the unit. she said that there was only one person ahead of him in his category {there are five or six categories}. she did another ECG and then, within minutes, the unit was called and hooked up to a heart monitor.
the doctor came. we explained about the results of the previous four ECGs done at three other hospitals, the fact that the unit had a long history of anxiety disorder and also, about Andrew's situation.
the doctor was going to get test results from at least one of the other hospitals. i'm forgetting specifics, as i'd been up since five am the day previous. he said that as an emergency physician, his role was to make sure that the unit was not in danger. he said that chest tightness could be caused by many things, for instance, a problem with the esophagus, but he said that non-life threatening problems would have to be treated outside of emergency. of course, completely understandable.
he was very kind, as was the aforementioned nurse. they both explained that the anomaly that had consistantly been found in the unit's ECGs could simply mean that his test result was not typical, but could just be the norm for him, and therefore, not a danger. if the snot-nosed cardiologist at toronto general had just taken a minute to explain that to the unit, a lot of worry and fuss and endless hours waiting in emerge at two different hospitals could have been avoided.
another cardiac enzyme test was to be done at six am.
i left the unit at 3:30 am after tucking him in the best i could with a thin little sheet. i shut out the lights, drew the curtains and slid the door closed. he was then on a gurney in the resuscitation area.
i came home and called work for the two of us.
he called me today at 4:15, having been moved to a huge single room. he had been visited by an internist at six am, who told him that one of the test results from one of the downtown hospitals had shown a possible uptake problem in one of the heart vessels.
as of 4:15, the unit had still not been seen by a cardiologist.
he's going to call back at six and i'll go and see him. hopefully Andrew and nicholas will come. what a role reversal, to have Andrew visiting the unit in hospital.
i know a lot about cystic fibrosis and mental illness. i have a decent, workable knowledge about liver disease and transplant. i know little about the heart, but i'm learning.
will keep you informed. you know me and my damned updates.

Andrew, nicholas and i went to trillium to see the unit. he seemed okay, although he hasn't slept much, and that certainly showed. he has a huge private room with a shower, and, of course, he has paid for television!
the cardiologist had been in to see him before we got there, explaining test options, etc. the unit asked if the cardiologist could wait until we got there, in order to hear what was being said, but the unit was his last patient, and he was going home.
the doctor talked about doing an angiogram, to get a picture of what was going on with the unit's heart, and he mentioned a second procedure which the unit was unable to describe properly to me. he also talked about the unit having another nuclear stress, to which the unit agreed. this test is scheduled for tomorrow.
the cardiologist said that the nuclear stress from toronto western had suggested a possible constricting of the vessels to the heart.
the nurse came in and answered all of my questions very patiently. i had told him that i had expressed to the unit my thoughts about having the angiogram in addition to the nuclear stress, in order to see everything through thoroughly. the unit had reluctantly agreed that i had a point. the nurse said that the best he could do was to leave word with the cardiologist, dr. "H", regarding the angiogram. it's pretty well out of the question to have an angiogram and a nuclear stress on the same day, as the latter takes about five hours. also, there may be by now a full quota of angiograms booked for tomorrow. the unit could still have the angiogram as an out patient.
the nurse explained that even though dr. "H" had specified that an angiogram would be preferable, that a nuclear stress would actually give a bigger picture of the problem.
i told the nurse that the unit had not slept much and asked if he could have a sleeping pill tonight. hopefully the doctor will allow one, and that if so, the unit will be willing to take it.
i hope that i'm not leaving anything out, but if i am, i'm sure it'll come to me tomorrow whilst i'm delivering stupid flyers that nobody wants, anyway.

oi! i remembered! {and i haven't delivered a single flyer yet!}
the cardiologist told bill that the stress echo from toronto western shows a possible constricting of cardiac vessels.

the unit had a nuclear stress yesterday and also spent an hour with a psychiatrist, because of his history of anxiety disorder.
he was discharged. the chest tightness is not cardiac. it is stress related.
please tolerate a bit of background {okay, a lot of background}.
the unit has been seeing an idiot for a doctor, who works out of a walk in clinic very close by. the man is so heavily accented as to be nearly indecipherable. last year, when the unit was falling apart over Andrew's situation, he asked me to come with him to see this "doctor". the man knows nothing about psychopharmaceuticals. okay, most admittedly, that is not his specialty {a GP HAS no specialty}. i butted heads with him as he confused a tetracyclic anti-depressant {remeron} with an antipsychotic {risperidone}. we talked about another anti-depressant for the unit, the name of which i cannot recall, but then the "doctor" presented the unit with a 'script for wellbutrin. since this is also an excellent drug {and is often used to help people quit smoking}, i thought that was cool. the "doctor" had also prescribed previously an anti-anxiety for the unit, clonazepam, but didn't want him to use it regularly, only when the unit was in a bad state. clonazepam belongs to a group of drugs called the benzodiazepines. they have a notorious POTENTIAL for addiction, but just because there is a potential, does not mean that a person is going to become addicted. i told the unit that in light of Andrew's situation, even an addiction would be the least of his worries, and could be dealt with after Andrew's transplant. i told the unit that he ought to be taking clonazepam regularly, at least until Andrew got a liver and that it was clear that he was going to make it.
the "doctor" gave the unit a list of psychiatists. the unit chose one and saw him in september of '09. this "doctor" gave him a 'script for topomax, which is actually an anti-convulsant. i thought that this was a strange choice, because there are EXCELLENT anti-depressants available, most being "cousins" of prozac, {which is a selective seratonin reuptake inhibitor}, which are good for treating depression AND anxiety. there's also remeron, a tetracyclic anti-depressant, which is good for depression and anxiety. i've been taking it for eons. but i didn't contest the topomax {not that doing so would have done any good, anyway}, because i know that anti-convulsants are often used "off label" for other problems, including psychiatric ones.
the unit took the 'script for topomax, folded it and left it in his wallet, only filling it a couple of months ago.
the psychiatrist that he saw at credit valley yesterday told the unit that the topomax was likely doing nothing for him, but that he could continue to take it if he wished. she said that the dosage of wellbutrin he was on was so tiny as to be totally ineffectual, and told him to discontinue use. he asked if he ought to wean himself off it, but she told him that since the dosage was so tiny, that he could just stop it. she told him that he ought to be taking clonazepam regularly {sound familiar?}. ninety percent of what came of this shrink's mouth is what i've been telling the unit for nearly a year and a half. she sent along a letter for the unit to give to his "doctor".
she asked the unit what psychiatrist he had seen and when he named the doctor, he said that her whole face changed. she told him NOT to go back to that doctor, because he had been, or was, up for review before the board. lovely.
the unit will continue to choose convenience over substance and i wash my hands of the whole issue. as Andrew pointed out, the unit seeks my advice and then ignores me. no, i'm not a doctor. i'm a delivery boy. but i have read extensively about mental illness since 1987, when Paul first was hospitalized, and i've been dealing with depression for thirty-five years. i have an elephantine memory and a certain facility with medical terminology.
my focus will remain on Andrew, alex and nicholas.
ya, i'm pissed off.

ps i DO realize that there is an egregious shortage of doctors in this province. so, it's understandable that a person might have to rely on a doctor at a walk in while he searches for one that is taking new patients. but the unit has not looked for another doctor, and he won't.

FIN