weekly medical update -- all star edition

hello my little droogies.

every tuesday, in addition to rehab, i have an appointment in the transplant clinic with Dr H and one of the Nurse Practitioners. this appointment is basically the full medical touchpoint, with issues ranging far and wide, long- and short-term, small and large, minor and major. and while medical news creeps into most every post on this blog (that is the point, isn't it?), i figured, since i'm getting a comprehensive update once a week, i'd give you one too. aren't i considerate?

this week, my regular nurse practitioner, B, was on inpatient duty, so dad and i met with N instead. we know her pretty well from emails during the listing and waiting process, and she's super smart and calm and prepared. we had a long talk with her and Dr H joined in after a while to add his doctorness to the equation. so here's the deal.

on my inability to sleep: basically, i haven't been sleeping too well. i'm up every day by 5:30 when the nightly percocet wears off. and i'm waking up about once every two hours (which is an improvement on the once-an-hour pre-transplant). part of it is pain, part of it is medication side effects. they don't want to prescribe any sleep aids, because i'm already on so many other meds that might interact, and because i've never before been on anything for sleep. so N's recommendation is to a) cut out caffeine after noon, b) relax in the afternoon but don't nap, and c) establish a consistent sleep routine with good sleep hygiene (which i think is a pretty awkward/funny phrase; makes me think more of bedwetting than anything else). i'm not really sure how i am supposed to simultaneously a) cut out caffeine; and b) not nap. coffee has always been a crutch for my inability to nap. as for establishing a sleep routine, it's harder than it sounds. for my whole life, my sleep routine has revolved around the 40-60 minutes of nebulizer treatments i had to do before and after bed. i don't have to do those anymore -- which is awesome, obvi -- but it leaves a big gap in my routine. tucking myself in these past couple weeks has felt awkward and unnatural to me. i have a feeling neither of these is going to counteract the drugs/pain issue, but i'll give it a try.

on my malfunctioning gut: the combination of a) cf digestive issues, b) the trauma of transplant, and c) the side effects of so many meds, has also resulted in some seriously uncomfortable gastroparesis. things just aren't moving properly through my gi tract. the result is some serious pain and discomfort after eating, and major gas issues (from both ends). (tmi? yea.) the problem of course is that i need to eat, and i need to really eat more than i normally would in order to get through the recovery process. which is, of course, in total conflict. i'm already on plenty of gi meds to try to counteract the side effects of the other meds, but they only do so much. the gastroparesis seems to be getting slowly better, but it is still mighty uncomfortable. (and the distended belly that comes with hides my previously perfect abs, which is disheartening.) but apparently, the only brilliant scientific resolution is: time. so i'm just supposed to keep doing what i'm doing and it will slowly resolve itself (hopefully) over the next few weeks.

on my swollen ankles/feet: my dame judy dench cankles returned this past weekend. i'm told it is not a major concern, as long as the swelling goes down every night, which it does. so i'll just keep an eye on it and try not to think of margaret thatcher.

on diabetes and blood sugar levels: not sure if i have mentioned this before, but i have added diabetes to my list of maladies. it was not unexpected. in fact, the incidence of diabetes in post-transplant cf patients is something close to 90%. it may go away as i am weened off some of the drugs, or it may be permanent. there's really no way to tell. but for now, i am cutting out lots of sugars, taking my blood-sugar levels three or four times a day, and dosing with insulin with every meal. it's a serious pain in the ass (or really, in the fingers) so hopefully it is transient. but it is under control for now, at least. i just have to keep the milkshakes to a minimum.

on tac levels: the major/most important drug i am on is an immunosuppresant called tacrolimus (or prograf). it is the main weapon in fighting organ rejection post-transplant. my blood levels are tightly monitored (twice a week) to keep the tac level at the proper range, and then the drug dosage is adjusted accordingly if things are not quite right. it often takes a few weeks for the tac levels to really settle into place, and mine have been fluctuating up and down from the low 5s to the high 19s. at this stage in the process, my tac is supposed to be between 8 and 12. monday's blood test put it at 5.2. so we have upped the tac dose back to 2.0mg. more blood will be drawn thursday to see how that's going.

on prednisone: in other dosage adjustment news, the weening off the prednisone has begun. prednisone is use post-transplant to help fight infections. it's also used to fight rejection, should that occur (it hasn't yet). it is one of the drugs that is a) screwing with my sleep; and b) causing the glucose/diabetes issues. so it's a good thing to start dosing down. Dr H dropped it from 30mg to 25.

and now on to the lungs, the part i know you've all been waiting for.

on my lung function: the primary test used to monitor my lung function is a pulmonary function test (pft) called a spirometry. it basically measures how much air i take in and push out. from that test, the benchmark number used to gauge my lung function is called the FEV1 (forced expiratory volume in 1 second). basically, it is a measure of how much air i can blow out in the 1st second of exhaling. pre-transplant, my fev1 was about 22% of normal/healthy/predicted. yesterday it was 41%. that is only a slight improvement on the 38% from last week, but it is higher than it has been since high school, and it is moving in the right direction. my FVC (forced vital capacity), the other major benchmark, measures the amount of air i blow out in the full exhale. that number is climbing at a much slower rate (and is actually still lower than pre-transplant), but this is to be expected. so all this is good news, droogies.

on my chest CT: last week, my chest xray showed two small pneumothorax. this means there were two pockets of air in my chest cavity where my lung should be. it's often caused by a partially collapsed lung. in this case, the pneumothorax is the result of a slight mis-sizing of the donor lungs. (it wasn't an error, it's just the reality of the situation that no two people are shaped alike.) basically, the lungs didn't quite fill my chest cavity, so there are some air pockets in the spaces. this should resolve itself over time, as the lungs expand, but we have to keep an eye on it to make sure it doesn't get worse for whatever reason. to that end, last week i had a chest CT done to rule out any major issues. the chest ct showed that a) the pneumothorax is very small and not a major problem, and not getting worse; b) the sternum is healing/fusing nicely and smoothly; but c) there seems to be a slight infiltration of pneumonia in the lungs. Dr H has decided not to overtreat the pneumonia since i am not showing any symptoms, but he has moved up the 6-week bronchoscopy to this week (which will be about 4 weeks) just to be on the safe side (and because he's going on vacation soon). so the bronch is scheduled for friday, which sucks something awful because i had some much anticipated visitors planned, and because i may miss the end of the netherlands-brazil quarterfinal. (go orange!) they'll be taking a biopsy to check for rejection and assessing the pneumonia issue. it should be fun.

a further note on the chest CT: over the years, i have seen dozens of my chest xrays, but i'd never really looked at one of my chest CTs. a few months ago, A, a med student friend of mine, showed me examples of a ct of lungs with bronchiectasis (present in CF, it is the enlarging/inflammation of the large airways). she also showed me a healthy lung CT (where the large airways -- those enlarged/inflamed circles -- are not visible). the difference, you'll noticed, is pretty marked. i had much the same reaction to that juxtaposition as i had when i saw the pictures of my explanted lungs: how did they work at all? yesterday, my ct looked like the healthy lungs. and to see the clean, healthy ct was sort of exhilarating, just like seeing the clean xray not long after transplant. it's mind-boggling to think what was there before.

my regular NP, B, stopped in to say hi and pulled out the final stitch from the chest tube holes. so all the stitches are out and i'm left with just scars and scabs. (and some staples in my chest, but you can't see those with the naked eye.)

overall , the visit went well. to give you a sense of the big picture, i'll tell you what N told me. when i asked her how i am doing in terms of the overall progress of my recovery she said, "you are an all star."

i refrained from agreeing with her out loud. you know, because i'm modest.


thanks to everybody at audible who sent a note with the care package. they took me quite some time to read through, which is a very good thing on so many levels. i look forward to seeing you all soon. no, really, i do.


perc dreams update: i've noticed that i've been getting beat up or shot in a large percentage of my dreams, especially toward morning (ie, when the nightly perc is wearing off). i'm wondering if this is my brain trying to explain why i feel like i "got hit by a bus" (which is a phrase every one at upenn uses to describe how your body feels post-transplant). that's not helping my sleep either.

a good weekend

well, it's been a good, visitor-filled weekend.

friday was visitor-free so i took the opportunity to shave off the transplant beard, which looked like this:
combined with my pre-transplant laziness, it had been growing for about 7 weeks. now, it is gone. it was never quite wayne rooney's unkempt hobo beard, but it was getting a little out of hand. and i swear my chin changed shapes while hidden behind it.

saturday brought with it a visit from 6 friends and my cousin. they came bearing gifts, as though i were jesus. even without the beard. so i got pizza (from nj), bagels (that smelled like home), pie (that was totally worth cheating on the diabetes for), and chocolate mousse cake (sugar free, but surprisingly good). unfortunately, they also brought bad luck, and the us fell to ghana 2-1 on some missed opportunities and ghastly defensive lapses. i hope you never play another game for the national team, ricardo clark. long live benny feilhaber.

lucky for me, all my friends were there to mitigate the misery of defeat. i was reminded how much it hurts to laugh a lot after major surgery. but, of course, it was worth it, and great to feel like things were semi-normal, even if i was in bed by 9 o'clock.

today i got a visit from two college friends. once again, we did very little but talk and watch soccer. and find out that most of the restaurants around me are closed for lunch on sundays. this would, of course, never have happened in dc where the restaurants are always open for sunday brunch. and once again im ready for bed mighty early, but pleased to be exhausted for good reasons.

mom has been here all weekend and made a lovely dinner this evening. she and dad will swap philly and nj tomorrow afternoon.

rehab tomorrow. then more rehab tuesday.
with the u.s. eliminated, ill be cheering for the netherlands. you should, too.


best percocet-induced dream last night: me as a guest on a late night talk show hosted by jack white, discussing jonah hill's new hiphop album, which was produced by jack white. oh, perc.

one week of rehab down

i've been told by a certain friend -- whose name rhymes with boysenberry, sort of -- that i need to update the blog. for the record, i was already aware of this. i was just being delinquent. and, to be fair, i warned you that i would not be as diligent as mom.

breathing continues to improve every day. im still working out in my head how to exactly describe the difference in feeling. it doesnt feel quite as "foreign" as it did at the outset, but it doesnt jive with my feeling of "normal" either. for the most part im feeling stronger every day, but by about 3 oclock every day i am pretty exhausted. and after dinner, due to various stomach/bowel issues, i usually feel kind of miserable. i need to eat smaller dinners.

thursday was the third and final day of the first week of rehab. the deceptively and demoralizingly simple rehab is every monday, tuesday, and thursday morning for two hours. thursday went something like this:
1. walk for 30 minutes at varied speeds averaging 2 mph; (time will be increased gradually to 45 min; then speed is increased)
2. take these pink 3-lb dumb bells and do really simple arm and chest building exercises, 2 sets of 10 for each arm; (weights will be gradually increased, i suppose, but because of the sternum cut, i am not supposed to lift anything over 5 pounds for a few weeks)
3. strap these 3-lb weights to your legs and do half a dozen different leg lifts and step exercises, 2 sets of 10 for each leg.
i couldnt help but think back to high school gym's weight training class as i concentrated on the reps. that was probably the last time i actually worked out in a gym.

despite the simplicity and the light weights, my legs are sore and my feet are starting to swell again. im not looking forward to tuesday's rehab, which will come without any luxurious days off beforehand.

mom i s back in town for the weekend. today we went to the reading terminal market and picked up lots of local, fresh food, and some much needed and delicious coffee and coffee beans at old city coffee (thanks for the rec, kowit). mom and dad are cooking up the tuna and scallops now. which will make the smaller dinners thing difficult. again.

of course, i totally forgot about the crowd restriction while at reading terminal. because of all the immunosuppressants, i am not supposed to be around crowds, especially indoors, for a few weeks. we tried to go before the lunch rush hour, but took longer than planned. dad managed to avoid freaking out about it though, which was nice. and we got out before it got too too crazy. death by the common cold averted. for now.

in more important news: go USA! i hope you all watched the US v Algeria game on wednesday. it was pretty intense. tomorrow i will be plopped in front of the tv (sadly must avoid the crazy soccer bars, thanks to aforementioned crowd restriction) with a whole gaggle of friends. dr. h cleared me to consume a beer or two in celebration if the US advanced out of the group stage (yes, i asked this specific question at my appointment on tuesday), though i'm not sure ill take myself up on the offer. we shall see.

tomorrow: official transplant beard pictures before i shave it off to begin the rehab beard.

down with ghana.

1st day of rehab

today was the first day of outpatient clinic and pulmonary rehab. which means three days a week of being at the hospital by 8am for blood work, chest xray, rehab (ie. walking on a treadmill and lifting weights a newborn baby could throw across the room), and doctor's appointment (only once a week).

the first day of rehab is basically just to get some baseline numbers to work off of, so it wasnt too strenuous. and my baseline turned out to be a bit higher than they expected, which means im doing better than is typical 2 weeks out.

my goal is to get myself into running shape. this is kind of a big deal considering a) i am the slowest walker this side of 90 years of age; b) i am historically physically lazy; c) my peak, strenuous, tryinng my hardest walking speed is apparently 2.64 mph; and d) i have not run (sober) for anything in over 8 years. the last time i actually ran was in the spring of 2002. i was in galway. i was about 50 yards from a bus that i was about to miss -- a very infrequent bus, this being ireland -- and i ran to catch it, so that i would not miss the train to dublin. well, i caught the bus, spent the whole ride to the train station catching my breath, and got to the train 2 minutes before departure time. but -- remember, i'm in ireland -- the train proceeded to sit at the station for 45 minutes for no apparent reason. as it pulled out, so late that i couldve skipped the bus and just walked all the way to the station, i resolved never to run for any reason ever again.

so today i went to buy running shoes. (i tried to do this sunday, but ran into some availability problems.) it is a purchase i hae been looking forward to for many months. and i am now the owner of a shiny new pair of aasics. the first pair of running shoes ive bought since the summer of 1999. ill be breaking them in tomorrow at rehab day 2.

the trouble now will be to not overdue it and hurt myself. eventually, my competitive nature is gonna kick in. i imagine itll be like the opening scene of that episode of house when house's leg is tempoprarily healed. he runs 8 miles to work and arrives dripping in sweat. so im gonna try to avoid that. at least for now.

in other news, the beard is coming off. as soon as my razor and brush arrive from nj. off with the transplant beard, on with the rehab beard.

i wonder what it will be like when im no longer a lazy gimp....

explanted lung pics

looks like mom had trouble with the pic loading. ill give her the benefit of the doubt and blame her iphone. but here are the pics, for your viewing (dis)pleasure. for some reason, the docs were shocked i wanted these pictures.

left:

right:

im debating whether to have tshirts made or to get a framed wall print for the living room. thoughts?

-chris.

Day 14

Christopher is HOME,  Of course “home” is now his apartment in Philly, but he is out of the hospital!  He had his first home-cooked meal last night since the transplant.  He likes his new digs, and complimented his dad on his efforts to find this place.  All the important comforts of home including his cappuccino maker and coffee grinder.  Chris even ventured out on his own least evening on foot, checking out his new surroundings, finding an ice cream shop, a breakfast place, an “interesting looking” restaurant, and the park.  Apparently the walk went well though a few rest stops were included.  Walking is good not only for lung exercise, but also to get away by himself. So now he can get settled in a new routine, getting in shape and getting his new lungs adjusted to their new occupant.

Pulmonary rehab starts tomorrow.  It’s quite novel thinking about not including aerosol machines and IV medications into his daily schedule.  And to not hear him cough and gag in the morning.  Thank you to the donor, the transplant team, the nurses, and all the prayers from family and friends.

Just to put things into perspective, Chris gave me the okay to post a picture of his “old” lungs.  He volunteered in a research project to donate his old lungs for research and asked that they send him photos of the explanted lungs.  So these are the lungs that he was functioning with prior to June 7, 2010:

     

          --Dana (aka Mom)

"home"

chris is now taking over the blog from mom. she has done a commendable job, but i'm sort of tired of seeing her inadvertantly post her work contact info over and over. sorry, mom. but thanks. you done good.

with my hijacking, the following things will now be true:
1. updates will likely be LESS FREQUENT. frankly, if things go properly, there shouldnt be a lot happening, which is good, because there will be less crap to bore you with. and frankly, im not nearly as diligent as mom, so things will slip.
2. you can now expect regular injections of SARCASM (and insulin).
3. TYPOS will abound.
4. the blog will be FUNNIER. obvi.
5. you will get TIRED of me. unfortunately, if you signed up for email updates, youre gonna have to figure out how to unsubscribe by yourself. cause i dont care.
6. entries will probably be LONGER. because i am verbose. and terribly lonely (see #2).

as you know, i was discharged this morning. i am now "home" at the new apartment across the river from the hospital. pretty sweet digs, really. dad far exceeded my expectations. i guess i underestimate him sometimes. post-transplant requires that i have someone around all the time, so dad and i will be living the bachelor life (except when mom comes to town). he is out now stocking up on whiskey, beer, pizza, potato chips, and cigars. and tonight they are installing the stripper poll in the living room. ahh, the bachelor life. sorry, mom.

lungs are good, though they still feel sort of foreign. i dont know how else to describe it. i have to sort of relearn to breathe, in a way. but everything seems to be healing properly, as far as anyone has told me. but the new medication routine will take some getting used to.

today's big decision will be about my playoff beard. whether to a) shave off my transplant beard and start afresh sunday with my rehab beard; or b) keep the transplant beard through rehab as one long playoff beard. its getting itchy, so im leaning towards shaving. either way, i feel it is an important symbolic gesture to overgrow my facial hair like a superstitious atthlete until this is all over. we'll just have to wait and see if symbolism is more important than looking like a crazy irish hobo.

lastly, thanks to everyone who sent cards, emails, texts, comments, etc. it was overwhelmingly helpful to know that so many people were following along and pulling for me. (that is the first and last sentimental thing i will say on this blog. its just not how i roll. but it all really did help.) the staff was pretty impressed with my massive mail haul. and y'all know how i llike to impress strangers. you guys are the best.

Day 13 10:41am

Discharge papers have been signed, and he is ready to go!
A new segment of his journey has just begun...

Day 12

Actually, it is now Day 13.

Day 12 started out with some scary moments:  Chris experienced 2 episodes of pretty severe tachycardia (that means, increased heart rate), the second episode more severe than the first.  Scary for Chris and mom, but apparently it is not uncommon after such major surgery (what “major surgery”?, Chris asked—haha) when there has been manipulation of the heart, and much of the circuitry has been rewired.  So a bunch of IV drugs and he was again concentrating on the world cup.  Priorities—and diversion!

Justin, Chris, and I had our “Medications Discussion” with the transplant nurse, who very patiently and efficiently explained the purpose and dosing off each of the meds.  There are actually 24.

 

The pneumothorax of Day 11 had resolved by mid-afternoon and his last chest tube was removed.  He “celebrated” by taking a brisk stroll around the 10^th floor unassisted and unattended (by a nurse), with an entourage of his 2 cousins and mom. 

And the plan is for him to be discharged this morning.

          --Dana

Dana O. Doheny, MS, CGC

Genetic Counselor, Research Coordinator

Mount Sinai School of Medicine

Department of Genetics & Genomic Sciences

1425 Madison Avenue, 14-75A

New York, NY 10029

212-659-6779 (O)

212-659-6780 (F)

866-322-7968 (toll-free)

Day 11-pm

Minor set-back today: chest X-ray this morning showed a "slight"
pneumothorax. That means that he has a small pocket of air in one of
his lungs. It is not uncommon, but it means that the last chest has
not been pulled out and his discharge from the hospital will be
delayed a day or two while they try to resolve it. So Chris was a bit
bummed out. But we had some visitors from home so that brought some
laughter into the room. Meanwhile his appetite is good; even he is
amazed that UPenn hospital food is not too bad. Or could that be
because he was starved for 9 days. Whatever the reason, he is eating
well. And he is now walking unassisted--yay! No more walker! Only a
nurse to accompany him and carry his chest tube drainage box (his
"suitcase", as he calls it) while he takes his scenic tour around the
10th floor.

In preparation for his discharge from the hospital, I picked up all
his new medications from the pharmacy today. And there are alot of
them--I think 19.

On the other side of the river (the Schuykill River, that is), Justin
and I are moved into the apartment, spent our first night there last
night, and I even walked the 1 1/2 miles or so over the bridge to the
hospital and back. So we are anxiously waiting for Chris to get out
and start the next phase of his recovery.

Go, Chris!

--Dana
Sent from my iPhone

Day #10

Life is good in Silverstein 1024. Chris has successfully transitioned
into a Regular diet and is a true member of the clean-plate club. Is
the food here at HUP that good or is this what happens when you are
deprived of food for over a week--you will actually look forward to
hospital food? His scenic tours of the 10th floor are brisker and
easier every day--no, he is not ready for a mini-marathon, but he is
getting ready for his 6-minute walk as part of his pulmonary rehab
starting next week. One more chest tube was removed this morning; one
more to go, but probably not until Friday or Saturday. But once the
last tube is out, he will probably be discharged the following day.
Awesome!! Chris would like to remind you that as of discharge he will
have a new address, probably for the next 3-4 months as he is closely
followed by the post-transplant team and does intensive pulmonary
rehabilitation. If you would like the address, please contact one of
us. Also noteworthy: at least for the first 8 weeks mom and /or dad wl
be around so don't plan any big weekend bachelor parties yet.

--Dana
Sent from my iPhone

Day 9 afternoon

Another good day. A few minor issues--his ankles and legs are
significantly swollen so they gave him "old lady stockings" and put
him on a diuretic. Temporary diabetes is commonly seen with steroid
treatment and should resolve as the steroids are decreased. He was not
too pleased with his first meals of supposed solid food cuz somebody
goofed and ordered thick liquids. Pudding and grits were not on the
top of his list.

We met with the transplant nurse for pre-discharge discussion (#2 of
2). And Justin and I got moved into the apt. So we are getting closer
to discharge. That is it for now.

--Dana
Sent from my iPhone

Day 8-pm

It has continued to be a good day. The 2 chest tubes are still in but
getting closer to being removed. His last meal of clear liquids was at
6 pm. And now he graduates to real hospital food. He has already
warned me that "regular diet" may mean mom or dad getting take-out.
And a cup of good coffee. The doc continues to be encouraged about
his progress. Way to go, Chris!

Chris wants me to tell you all that he greatly appreciates all the
emails, blog responses, and cards. He has been reading them and will
respond as soon as he is able to.

And Justin and I thank you for all your prayers.

--Dana
Sent from my iPhone

Day 8

So far it is a good day. Chris had a bit of pain this morning but it
is better now with some drugs and lidocaine patches. Solid foods start
tomorrow so only one more day of brown water and jello. Walks getting
longer and brisker. Thank goodness for the World Cup to entertain him
during the day. I doubt even post-transplant recovery could get him to
watch Soaps and Oprah Winfrey. In preparation for discharge I
attended a transplant support group lecture on medications this
afternoon. Yes, chris does not get out of taking drugs, just into
taking a new regimen of drugs to fight rejection. Shelley Merritt,
old-time friend who now lives in Philly and works a few blocks away
from HUP, came for a short visit--his first non-family visitor. A good
day.

--Dana
Sent from my iPhone

Day 7 pm-addendum

I forgot to let you all know that Chris has been moved to another room, same floor, just a different room:  Silverstein 1024.  The room is bigger, away from the noise of the nurse’s station, with a view of the UPenn football stadium and the skyline of Philadelphia.

          --Dana

Dana O. Doheny, MS, CGC

Genetic Counselor, Research Coordinator

Mount Sinai School of Medicine

Department of Genetics & Genomic Sciences

1425 Madison Avenue, 14-75A

New York, NY 10029

212-659-6779 (O)

212-659-6780 (F)

866-322-7968 (toll-free)

Day 7 pm

Chris is doing incredibly better.  He seems to be tolerating food—if you can call beef broth (which Chris describes as “brown water”), jello, raspberry flavored ice, cranberry juice, ginger ale, and tea “food”.  His assisted walking is brisker paced and a longer distance (the full length of the hallway). He is more conversive and his sense of humor comes to the surface every once in a while.  He still has some back pain, but it appears to be more localized rather than diffuse.  The pulmonologist showed us the before and after x-rays of his lungs which was incredible—no more junky lungs.  Awesome!  Thank you to the donor for taking such good care of his/her lungs.

It is the end of day 7, and it was a good day.

          --Dana

Dana O. Doheny, MS, CGC

Genetic Counselor, Research Coordinator

Mount Sinai School of Medicine

Department of Genetics & Genomic Sciences

1425 Madison Avenue, 14-75A

New York, NY 10029

212-659-6779 (O)

212-659-6780 (F)

866-322-7968 (toll-free)

Day 7 am

Chris seems much better today. His back still hurts, but he got a
better night's sleep (thank you, sleeping drugs!). The belly issues
seem to be resolved so they are starting him on clear liquids for
lunch. He said that last night watching tv was brutal--every other
commercial was for food; KFC popcorn chicken never looked SO good! He
has been on supplemental oxygen since the surgery (standard procedure)
and that was discontinued yesterday afternoon. Even with walking his
oxygen level remained at 98%! He is anxious to get the last 2 chest
tubes out, which will not happen today, but things are definitely on
the up-side today.

--Dana
Sent from my iPhone

Day 6 am

Things keep improving a little bit day by day. Chris' belly pain is
significantly better so it seems that the NG tube technique worked.
The real test will be if he can tolerate food. Though he is not real
excited about chicken broth and jello. Nope, not even a taste of
coffee yet. The surgical NP removed 2 more chest tubes yesterday
Afternoon so he is down to 2. Those 2 will remain until the drainage
gets down to a certain amount in a 24-hour period. Back pain is still
a problem, and sitting in a chair brings more relief than heated packs
or lidocaine patches. His walking is still with assistance but is
getting a bit faster and he is able to go farther each day. He is now
sitting in a chair, checking email, and watching the Nigeria-Argentina
(world cup soccer) game on tv.

As for Justin and me, we had our first "preparation for discharge"
lecture on Thursday. Lecture #2, scheduled for yesterday, was pre-
empted by the bronchoscopy so will wait until Monday. More business
in preparation for Chris' discharge, Justin found an apartment about 5
minutes away which will be our temporary home-away-from-home for 3-4
months after Chris gets discharged, hopefully next week. The apartment
is right across from a park and overlooks the river (Schullkill, I
think), in a city residential area. Not the museum district which is
what Chris had wanted, but there are shops and restaurants around
within walking distance.

So that is about it for now. More later, I am sure.

--Dana
Sent from my iPhone

Day 5

Good progress today. His pain is greatly reduced after some tubes were removed and some excess air and fluid.

Just finished a bronchscopy to see from the inside how things are healing. Doc said it looks excellent and thinks things are going well.

He is still wiped out, think crash-test dummies after the wall.

Overall things continue to progress on or about the expected course of recovery.

Last night Dana and I sent a thank you card to the donor's family. Tough to write but we wanted to get something to them quickly. On that note, any one that has not signed an organ donor card please do so ASAP. We never know when tragedy will happen and we might as well do what we can to have something positive come out of tragedy.

More later.

Justin
Sent via my BlackBerr

Day 4--update #2

Just as a follow up after Justin's posting yesterday early afternoon:
Chris continued to have severe pain. He was taken off all narcotics
because of intestinal blockage (i.e. Severe constipation--definitely
something new for chris) due to "motility problem" as a result of
surgery but worsened by the narcotics. So no PCA. Belly pain. Back
pain. Pain from chest tubes. Pain specialist was consulted. NG (nasal-
gastric) tube was inserted to slowly suction out the gas and contents
in his gut. By the time we left last night at 8:30 (visiting hours end
at 8, and they DO kick you out), he was feeling better and actually
sleeping, seemingly comfortably.

More later.

--Dana
Sent from my iPhone

Post-Transplant Day 4?

Today is Thursday, Dana and I cannot seem to decide what number post-transplant today is, so that gives you some idea of how crazy/disoriented we are.

Chris continues to have a great deal of pain despite everyone's best efforts. Good news is that two chest tubes were removed this morning so that should help reduce the pain eventually. He is walking with assistance and this is very good.

Some of Chris' friends have been emailing him directly. He asked me to tell you not to expect a response as he is not up to it. Just so you know, I do read to him all the comments that you post to the blog, I get them real time on my Blackberry.

Justin
Sent via my BlackBerr

Mailing Address

Forgot to mention that cards would be great at about this time. Mailing address is:

Christopher Doheny
1016 Silverstein
Hospital of the Univ of PA
3400 Spruce Street
Philadelphia,PA 19104

Thanks.

Justin
Sent via my BlackBerr

Day 3

Things continued on a positive note today. He walked with assistance, several lines were removed and he is doing well enough that he was transferred out of ICU to a step-down unit.

He is still on large doses of pain meds and much of the day is sleepy/groggy, the long-lasting anesthesia from the operation has worn off and now he is left with pain meds through his PCA pump.

Still connected to 7 or 8 tubes, lines and drains. So we are making progress but slowly.

Justin
Sent via my BlackBerr

End of Day 2

Day 2 went well. Chris was out of bed in a chair for about 6 hours, his sarcastic humor is beginning to return and he has been started on a clear liquid diet, and no, that does not permit consumption of beer and vodka.

All of the above is good news, but he is still recovering from major surgery and is drained. So please no visitors yet. We will let you know when he is up to having visitors.

He is talking but it takes a good deal of effort, so no phone calls yet either.

His pain is pretty well controlled by using a PCA pump, he pushes a button and the pain med is delivered, within limits set by the docs.

No live plants (or animals) permitted, at this point flowers are a no no as well. For those interested in sending a card I'll get the address out in the morning.

Thanks. More as it develops.

Justin
Sent via my BlackBerr

Vent Tube out

Good progress this morning. He is off the ventilator and eating ice chips. With any luck the nurses will get him up and moving this afternoon.

He is doing well. It also looks like the attending that has followed him here for the last few years just happens to be covering inpatients for the next two weeks. "Dr. H", he is a pulmonary doc and he does CF as well as transplant, so we have all the bases covered.

Justin

Sent via my BlackBerr

According to the docs and nurses, Chris is doing great. Since he is
ventilated, he has not been able to talk--which has been quite
difficult for him as you can imagine--so he communicates by sign
language and writing. Within 2 hours after surgery he was "talking" by
writing on my hand. One of his post-surgical requests has been ice on
his knees so I have become ice-mom, filling my hNs with ice and
rubbing his knees. Be ause of the vent he Also cannot swallow
anything more than saliva so dry mouth is somewhat relieved with tiny
sponges on a stick dipped in ice water that he can suck on but only 2x
or so an hour. His hemoglobin was quite low so he received a blood
transfusion early this morning. Meanwhile all the monitors keep
working away, sometimes sounding out some musical sound alerting the
nursing staff that something is not quite right.

The nursing staff has been wonderful. Emily and Valerie.

Shortly, they are expecting to extubate--remove the vent-- him.

That is it for now. It has been 34 hours since we got the call.

--Dana
Sent from my iPhone

End of Day One

Looks like day one has been a success. The plan is to try and extubate Chris first thing in the morning, standard weaning protocol and we will have to see how it goes. Time to try and get some sleep for all involved.

So far so good. More tomorrow.

Justin
Sent via my BlackBerr

End of Day One

Looks like day one has been a success. The plan is to try and extubate Chris first thing in the morning, standard weaning protocol and we will have to see how it goes. Time to try and get some sleep for all involved.

So far so good. More tomorrow.

Justin
Sent via my BlackBerr

End of Day One

Looks like day one has been a success. The plan is to try and extubate Chris first thing in the morning, standard weaning protocol and we will have to see how it goes. Time to try and get some sleep for all involved.

So far so good. More tomorrow.

Justin
Sent via my BlackBerr

Chris Update

4:00 PM He seems to be resting comfortably with some good drugs on board.

Justin
Sent via my BlackBerr

First Look. 1:15 PM

Chris made it up to ICU, pretty heavily sedated but looks good considering what he has been through. The tube means he can't speak but with gestures he has made his wishes clear. Dry mouth, pain meds and sleep.

Thanks for all your well-wishes and prayers.

More later.

Justin
Sent via my BlackBerr

Surgeon's Report 10:49AM

Attending surgeon just briefed us on the procedure...things went well, he called the lungs "excellent" and was pleased with how things look.

Chris should be up in ICU by Noon or thereabouts. He will likely be intubated and sedated at least through part of tomorrow.

Overall a very good report and seemingly good prognosis.

Justin
Sent via my BlackBerr

6/7. 8:51 AM

Chris is still in the OR but we do know that things are going well and they are working on the second lung.
Looks like it will be a few more hours.

Justin
Sent via my BlackBerr

June 7 6:25 Update

Just heard from one of the staff that he is still on bypass but that everything is going well.

Justin
Sent via my BlackBerr

Surgery

Not sure what the process is but the staff are reporting a procedure start time of 3:13 AM. So things are underway.

Justin 6/7/10 3:35AM
Sent via my BlackBerr

Chris in Surgery 2:00AM June 7

HUP, called about 10 PM and indicated that they had a set of donor lungs, so we drove like crazy and made it down to Philly about 11:30 PM.  They did some tests and wheeled him to the OR about 12:30 AM.  He is there now and we are waiting for word.  I expect that we won't know much until sometime in the morning. 

More as it becomes available.

Justin