tag:blogger.com,1999:blog-60519254274759000252024-03-14T02:04:05.481-04:00Something Less Awfultranspiring post-transplantJustinhttp://www.blogger.com/profile/15274988637650668578noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-6051925427475900025.post-5424364339273967782013-03-13T10:53:00.001-04:002013-03-13T10:53:57.480-04:00Postscript from mom<div class=WordSection1><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal><b><span style='font-size:8.5pt;color:#3A669C'>WEDNESDAY, MARCH 13, 2013<o:p></o:p></span></b></p><p class=MsoNormal><b><span style='font-size:16.5pt;color:#3A669C'>POSTSCRIPT by Mom<o:p></o:p></span></b></p><p class=MsoNormal><b><span style='font-size:8.5pt;color:black'><o:p> </o:p></span></b></p><p class=MsoNormal><span style='color:black'>Christopher returned to work at Audible in November 2010, at first part-time, transitioning to full-time effort through the next months. In February 2011, he moved into his own apartment in Jersey City, a 3-flight walk-up, walking distance to the PATH train, restaurants and friends. He played. He walked. He worked. He wrote. He read. He fell in love. He enjoyed life.</span><span style='font-size:10.0pt;color:black'><o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>During the summer of 2011 complications began to occur. Lung infections occurred intermittently, requiring IV antibiotics. The post-transplant gastroparesis became severely problematic, compromising his nutritional status, and necessitated surgery (pyloroplasty and fundoplication). A jejunostomy feeding tube was surgically inserted in March 2012. Meanwhile hospitalizations and rounds of antibiotics became more frequent. On April 10, 2012 he was informed by the Transplant team that there was nothing more they could do. <o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>Christopher came home and his family and friends prepared to say good-bye. We were then introduced to a nursing team that became invaluable—a nurse, social worker, and physical therapist who became an indispensable and integral part of our lives. During the next months family and friends filled our house, sharing time with Christopher, playing scrabble, watching movies and soccer games, chatting about fun-times, updating activities at Audible, discussing books, enjoying tea-time and his pour-over gourmet coffee, sharing meals, laughing and crying. Morning routine included his daily dose of soduko and catching up with the news on his iPad while enjoying a pot of his coffee. When able, he wrote, working on a manuscript. By January 2013 his status had deteriorated significantly. Episodes of severe breathing difficulties occurred more frequently, morphine requirements increased, fatigue was overwhelming, appetite decreased. On February 1<sup>st</sup>, in the company of his nurse and his mom, he announced “I am done”. <o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>On February 20, 2013 at 11:05 pm, with his mom and dad, two brothers, sister-in-law, nephew, and best friend close by, Christopher took his last breath.<o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>Christopher’s cremains (he elected to be cremated because he had had enough poking, prodding and injections in life, and wanted no more in death) were buried on February 25, 2013. <o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>We thank all our family and friends and Christopher’s many friends for their thoughts and prayers as we walked through this part of our journey with Christopher. The wake was indeed overwhelming. So many people…waiting an hour outside in the cold on Sunday afternoon. Friends from grammar school and high school, old teachers, friends from Georgetown, some coming from Colorado and England, people from Audible, including the CEO and the guy who hired him initially, plus the audible “tea ladies” and his close working cronies. His doc from HUP. Of course, his nurse here and the social worker who were such a tremendous part of our lives these past months. And our wonderful family. Such a tribute to Christopher, a testament to how many lives he touched. The funeral was the same, overwhelming with people. The service was inspiring, the priest doing his homework, talking about Chris with the passion that Chris had, even though he did not know him directly. We had a police-escorted caravan of 50 cars driving the 32 miles to the cemetery. The repast was full of tears not yet spent, but also laughter as stories continued. Christopher has a huge collection of books, most of which he had read. He was categorizing them electronically with the intention of distributing them to friends. So we brought about half of them to the repast and spread them out on tables so friends could take those that they wanted. A wonderful tribute to Chris and a joy to all his friends who could take home a piece of Chris. As the people left, books in hand, each one had a story or a reason for taking the selections they did. Christopher did indeed make a mark.<o:p></o:p></span></p><p class=MsoNormal><span style='color:black'><o:p> </o:p></span></p><p class=MsoNormal><span style='color:black'>Christopher is now at peace, breathing freely.<o:p></o:p></span></p><p class=MsoNormal><o:p> </o:p></p></div>Justinhttp://www.blogger.com/profile/15274988637650668578noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-37866828127562453492010-10-12T17:38:00.002-04:002010-10-12T17:50:04.221-04:00the long-awaited ctI headed off to <span class="blsp-spelling-error" id="SPELLING_ERROR_0">HUP</span> today for the long-awaited CT scan along with a doctor's appointment. In case it's been so long that you've forgotten, the CT was to check that the infection from September (the one that had to be surgically drained and landed me in the hospital twice) had fully abated. If not, I'd be back on endless weeks of IV antibiotics with some harsh side effects that already put me into acute renal failure once. Not to mention, it would set this whole recovery thing back quite a few steps, yet again. So as far as I was concerned, the stakes were pretty high: fine and clear; or 6 weeks of misery that may or may not solve the problem.<br /><br />I'll not keep you in suspense. The CT went well. The infection is completely gone as far as they can tell. I have some inflammation around my sternum, but that has been showing up in <span class="blsp-spelling-error" id="SPELLING_ERROR_1">CTs</span> since the transplant and hasn't gotten any bigger. Also, it looks like the persistent-if-slight <span class="blsp-spelling-error" id="SPELLING_ERROR_2">pneumothorax</span> is all but gone. So, all good news.<br /><br />Also had another lung function test, and the numbers were stable, improved just a tiny bit. The stomach is still an issue, and doesn't seem to be improving much despite a new med, so I'll just have to wait it out, I suppose.<br /><br />That's about it. Back to the doc's in a month to make sure things are going smoothly, and I'll see where I go from there.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-51489079763403517892010-09-23T12:29:00.002-04:002010-09-23T12:39:37.849-04:00goodbye, phillythis past <span class="blsp-spelling-error" id="SPELLING_ERROR_0">tuesday</span> i had yet another doctors appointment, just to check in after the hospitalization. everything looked <span class="blsp-spelling-error" id="SPELLING_ERROR_1">ok</span>, though my <span class="blsp-spelling-error" id="SPELLING_ERROR_2">creatinine</span> was still a little high. but my lung function was up to 53%, which is a small but significant increase from prior to all the infection drama.<br /><br />now <span class="blsp-spelling-error" id="SPELLING_ERROR_3">i'm</span> back to a sort of waiting game. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">i've</span> stopped all the antibiotics, but no one is totally convinced that the infection has been completely erased. so on <span class="blsp-spelling-error" id="SPELLING_ERROR_5">october</span> 12, <span class="blsp-spelling-error" id="SPELLING_ERROR_6">i'll</span> have one more CT scan to check everything out to be sure the infection has gone the way of the dodo. if it resurfaces by then, not sure what we're going to do, since the one antibiotic that kills it also knocks me on my ass and obliterates my kidneys. so here's <span class="blsp-spelling-error" id="SPELLING_ERROR_7">hoping</span> the infection is gone completely.<br /><br />after the appointment, dad and i packed up the last of the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">philly</span> apartment and turned in the keys. i wasn't too sad to say goodbye, frankly. it was a nice place and all, but it's been a rough few months and it's a lot more comfortable to be back in <span class="blsp-spelling-error" id="SPELLING_ERROR_9">nj</span> with the parents around while i re-rehab. the past few weeks negated a lot of the work i did to get back into game shape, so <span class="blsp-spelling-error" id="SPELLING_ERROR_10">i'm</span> practically starting from square one in terms of regaining my strength and putting back on the weight i lost (again) from this most recent ordeal.<br /><br />so anyway, <span class="blsp-spelling-error" id="SPELLING_ERROR_11">i'm</span> back in <span class="blsp-spelling-error" id="SPELLING_ERROR_12">nj</span> for good. staying with the parents again, for now. still trying to get up and running.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-18344418413051295532010-09-18T11:16:00.003-04:002010-09-18T11:42:58.815-04:00Hospital stay over, for nowDay 5 in the hospital and I am waiting for my discharge papers. It's been an interesting stay though. <br /><br />As I said, I got admitted for acute renal failure that we all assumed was a result of the colistin I was on to combat the infection that I had surgically drained on my previous stay. So when I got here, they stopped all the antibiotics and started pumping me full of IV fluids in order to flush out my kidneys. Slowly but surely, my kidney function has been trending positively and is on the verge of being completely normalized. So that's good. <br /><br />While they were waiting to see if the fluids were working, I had an ultrasound of my kidneys, to make sure there was not a physical problem with the kidneys that might be causing the renal failure. As expected, everything there was normal. <br /><br />So into the next test. Since they had stopped the antibiotics, the doctors wanted to be sure that there was no infection growing where the abscess had been, so they ordered a CT of my chest and neck. Well the area where the abscess had been looked improved, but they saw something they didn't like around my aorta: either a hematoma or an infection. Either one was likely the result of the abscess surgery, but while a hematoma would not be a big deal and would heal on it's own, an infection would be a major problem, especially since the antibiotics needed to fight it had done a number on my kidneys. So, more testing to figure out if it was an infection. Normally, they would have ordered a CT with contrast, but they didn't think my kidneys could take the contrast in their current condition, so I was headed to nuclear medicine. <br /><br />In nuclear medicine they did a tagged white blood cell scan. Basically, they took 50ml of blood from me, separated the white cells, and tagged them with radioactive material. Then they reinject the white cells, wait a few hours and scan my chest to see if the white cells cluster anywhere. The idea is, since white cells attack infections in the body, the radioactive white cells would head for any infected area and you'd see a cluster of white cells on the scan. So if the white cells clustered around the suspect area of my aorta, that would mean that the abnormality on the CT scan is in fact an infection. For once, I dodged the bullet. The WBC scan came back negative for infection. In fact, the white cells did not even cluster around the old abscess region, so presumably there is no remaining infection there. The conclusion is that the spot on my aorta is a hematoma and the spot around the old abscess is just some inflamed tissue. <br /><br />So the plan now is to discharge me today, without any antibiotics to make sure my kidneys can heal all the way. And then I'll have a follow-up CT with contrast in a couple weeks to make sure everything is a-okay. <br /><br />I'll be heading back to NJ and moving out of the Philly apartment. And hopefully things will go a bit more smoothly now.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-19843865815491223932010-09-14T14:00:00.004-04:002010-09-14T14:06:19.037-04:00back to the hospital, againso we'll start with the good news again. the penrose drain came out yesterday and the hole in my neck/chest seems to be healing just fine.<br /><br />now to the bad news. had some blood work done today and then went in to see the dr h. it seems my kidney function is way high, as is my tac level, and i am in some sort of acute renal failure because of the combined toxicity of the tac and the colistin. so i'm headed back to the hospital as soon as a room opens up for me. the plan is to hydrate me with iv fluids, monitor the tac and creatinine levels and get them under control, make sure there is no permanent damage to my kidneys, and figure out a way to continue treatment for the previous infection at nontoxic levels.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-77359739592459292362010-09-08T16:30:00.002-04:002010-09-08T16:45:56.708-04:00Day 8: Dischargei have just been discharged from the hospital. that's the good news. most of the rest of this is the not-good news.<br /><br />it looks like the bacteria that made up the abscess was a new one to my body. it is still pseudomonas, but a different strain than was present in my lungs/body before the transplant. and no one has any idea where it came from. one theory was a esophageal tear, but there is no evidence of that. another was that the infection migrated from the left anastamosis when the stent was removed, but the location of the abscess makes that very unlikely. so i am left with a very drug-resistant bacteria, no real explanation as to how it got there, and no confirmation that the drugs i'm taking will kill it. we should know from the lab results if the bacteria is resistant to the colistin i am on in the next few days. but all this is a troubling development, as dr h put it.<br /><br />so i am home, but i am looking at 6 weeks of IV and oral antibiotics. also i have a small rubber tube, a penrose drain, sticking out of my neck and secured with a safety pin. no joke. dad gets the pleasure of retracting it an inch every two days until it is all the way out. that should take a week or less. meanwhile the drugs and the hospital stay have left me kind of dizzy. not sure exactly what that's about, or if it's going away anytime soon.<br /><br />in related news, today is three months and one day since the transplant. it's about the time i expected all the major recovery issue to be wrapping up. go figure.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com2tag:blogger.com,1999:blog-6051925427475900025.post-32896758382691466272010-09-06T12:30:00.002-04:002010-09-06T12:40:15.367-04:00Hospital Day 6Still in the hospital. I am told I am recovering fine, but I still feel miserable. <br /><br />The surgery went fine and I now have a straw sized tube sticking out of my neck to continue to drain the fluid in the cavity where the abscess was. Swallowing is fine now, but I have some limited mobility in my neck because of the incision and the bandages. The incision is apparently two inches long. So I'll have another fantastic scar to show off. <br /><br />Meanwhile, they are hitting me with a kitchen sink of antibiotics because they are still not sure what sort of bug was in the abscess. The sample they took has grown gram negative rods, but they are waiting for further growth in order to identify the specific species and subspecies of bacteria so that they can properly focus the antibiotics. They should know that by tomorrow or Wednesday. Tomorrow I will also have a CT to assess the situation<br /><br />Mom, Dad, and KC have been hanging out at the hospital with me, but I'm not very good company. <br /><br />That's about all I've got. Enjoy your Labor Day.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-56390791704026363962010-09-03T17:18:00.000-04:002010-09-03T17:18:14.346-04:00Dad's Hospital Update # 1Looks like things went about as expected in the OR. I just spoke with the attending surgeon and he says things went well. They checked out his throat and windpipe and neither looked like the source of the infection/abscess. So the cause remains a mystery, we will just have to wait and see what they can identify in the Lab.<br />
<br />
At this time he is in Recovery and I expect to be able to see him in an hour or so, then off to an inpatient bed somewhere. It looks like he will be in the hospital for a few days while they wait for lab results and to see what if any additional antibiotics are indicated.<br />
<br />
That is all I know at the moment. <br />
<br />
JustinJustinhttp://www.blogger.com/profile/15274988637650668578noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-47016181873811183472010-09-03T10:35:00.002-04:002010-09-03T10:43:32.441-04:00Hospital updateSurgery is scheduled for today, Friday, at about 2pm. I spoke to the surgeon this morning. They are going to put me under, do a bronchoscopy to make sure nothing was missed in the lungs; do an endoscopy to see if there is any infection in the esophagus or the upper GI tract; and then, most likely, they will make an incision in my neck and go in and drain the abscess. <br /><br />No surgery is without risks, of course, but one of the residents did describe this as "child's play" compared to the transplant. Though this surgery is complicated by my post-transplant immunosuppression. Not sure how long the surgery will all take, but it looks like I'll be in the hospital a few days recovering and I'll probably leave on more IV antibiotics. Hopefully everything goes smoothly.<br /><br />Still no idea what caused the abscess, but they may be able to determine that based on what they see inside.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com3tag:blogger.com,1999:blog-6051925427475900025.post-87353646413129315322010-09-02T12:50:00.002-04:002010-09-02T13:09:48.194-04:00Hospital holidaySo since my plans for the long labor day weekend seemed like too much fun, I decided to just have myself hospitalized instead. Otherwise, I might enjoy myself a little too much. <br />If you've been keeping up, you can probably guess that the CT Wednesday morning did not go terribly well. They found some sort of abscess in my mediastinum that is excerting pressure on my esophagus and trachea, and displacing my esophagus slightly. Hence the swallowing problems ive been experiencing. The abscess seems to be a pocket of fluid, about 3x5 cm, though they cannot determine the nature of the fluid and are not sure if it is infectious. So the solution is to go in and drain the abscess and test the fluid to see what we are dealing with. <br />And that is where the fun begins. I'm on an interventional pulmonary service, and so far they've consulted with interventional radiology, cardiothoracic surgeons, and the ENT team. No one seems particularly excited to tackle the problem. CT Surgery is deferring because their procedure would be the most invasive. But ENT insists that the abscess is too far down and out of their specialty range. And IR doesn't think they can get at the abscess because it is blocked by lots of blood vessels and major arteries. So by default it looks like it's going to be cardiothoracic, though they are consulting with other ct surgeons to determine who should have a go and how best to attack the abscess. <br />So, having checked into the hospital yesterday around 4, ive been here 20 hours, seen about a dozen docs, and there is still no real plan. Basically I'm just sitting in my lovely hospital room with it's shitty tv waiting to hear back from cardiothoracic. They may schedule something for tomorrow or maybe not untill next week. If they push it back to next week, I will probably insist on going home for the weekend, but we shall see. <br />I'll keep you posted.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com3tag:blogger.com,1999:blog-6051925427475900025.post-5577383775201053072010-08-31T15:43:00.002-04:002010-08-31T16:06:52.598-04:00Overdue Medical Updateso, it's been a while. i just got back from a doctor's appointment, and i guess there is quite a bit from the past two weeks to recap, <span class="blsp-spelling-error" id="SPELLING_ERROR_0">healthwise</span>.<br /><br />a couple weeks ago, i started experiencing this weird feeling in my throat, like something is lodged there and <span class="blsp-spelling-error" id="SPELLING_ERROR_1">won't </span>go down. so every time i swallowed, it was pretty uncomfortable. it got worse over the past week, so yesterday i underwent a <a href="http://www.emedicinehealth.com/barium_swallow/article_em.htm">barium swallow study</a>: basically i drink a thick, chalky liquid in various standing and laying positions while they take pictures of my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">esophagus</span> and upper g.i. area. the results were inconclusive in terms of the swallowing issue, but did show more acid reflux. so today <span class="blsp-spelling-error" id="SPELLING_ERROR_3">dr</span>. H upped my acid reflux med and ordered a throat CT w/ contrast (tomorrow a.m. -- yippee) to check for inflamed nodes or something of the sort that may be pushing on the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">esophagus</span> from the outside.<br /><br />meanwhile, the stomach issues have been coming and going. had some severe pain a few weeks ago, then it went away, then it came back, etc. so we are swapping out two of the g.i. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">meds</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_6">reglan</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_7">erythromycin</span>) for <span class="blsp-spelling-error" id="SPELLING_ERROR_8">domperidone</span>, a med not approved in the US, but used extensively in <span class="blsp-spelling-error" id="SPELLING_ERROR_9">canada</span> (where <span class="blsp-spelling-error" id="SPELLING_ERROR_10">dr</span> H used to practice). this means i have to order it from some pharmacy in <span class="blsp-spelling-error" id="SPELLING_ERROR_11">canada</span>. just one more hassle. but <span class="blsp-spelling-error" id="SPELLING_ERROR_12">hopefully</span> it will solve the stomach issues.<br /><br />of paramount importance, of course, are the lungs. i had a <span class="blsp-spelling-error" id="SPELLING_ERROR_13">bronchoscopy</span> this past <span class="blsp-spelling-error" id="SPELLING_ERROR_14">friday</span>. no rejection, no growth of fungus or bacteria, no major cleanup necessary. the only hiccup was that the left <span class="blsp-spelling-error" id="SPELLING_ERROR_15">anastamosis</span> (the one that had the <span class="blsp-spelling-error" id="SPELLING_ERROR_16">stent</span> for the <span class="blsp-spelling-error" id="SPELLING_ERROR_17">dehiscence</span>) healed very narrowly. so it took some forceful prodding to get the <span class="blsp-spelling-error" id="SPELLING_ERROR_18">bronch</span> scope in. the resulting inflammation and all the poking and prodding knocked me off my feet, so to speak, for a few days. but it looks like the airway may have opened up a bit, because my <span class="blsp-spelling-error" id="SPELLING_ERROR_19">FEV</span>1 (lung function) is up to its highest point, at 49%, a marked increase from testing three weeks ago. but as a result of the narrowing, unless the lung function drastically improves, they may need to put in a sort of balloon to widen the airway in <span class="blsp-spelling-error" id="SPELLING_ERROR_20">november</span>.<br /><br />the other open issue has been my energy level, which has been <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">particularly</span> low the past couple weeks. this one seems to be a mystery. all the blood levels have come back normal and we can't seem to pinpoint the cause. <span class="blsp-spelling-error" id="SPELLING_ERROR_22">i'm</span> discontinuing one heart med that may be contributing to the problem, but otherwise it seems to be a wait-and-see sort of scenario. hoping that fixing the other problems will help fix this one.<br /><br />that's about it. overall, <span class="blsp-spelling-error" id="SPELLING_ERROR_23">i'm</span> no tin bad shape. no major setbacks. just a few little ones that are being consistently uncooperative. so hopefully something will break in my favor. and hopefully the CT tomorrow will illuminate <span class="blsp-spelling-error" id="SPELLING_ERROR_24">this</span> swallowing issue. and with any luck the lung function numbers will start climbing regularly now.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-49167813368055706752010-08-18T09:57:00.003-04:002010-08-18T10:15:38.509-04:00nothin doin (america edition)so i have little to nothing to report. but, of course, no news is good news.<br /><br />my <span class="blsp-spelling-error" id="SPELLING_ERROR_0">bronch</span> has been pushed back a week for scheduling reasons, but i went in yesterday for some <span class="blsp-spelling-error" id="SPELLING_ERROR_1">bloodwork</span>. i <span class="blsp-spelling-error" id="SPELLING_ERROR_2">haven't</span> heard back about any of the results, which means everything is a-okay.<br /><br />after <span class="blsp-spelling-error" id="SPELLING_ERROR_3">bloodwork</span>, i decided to waste the day in high <span class="blsp-spelling-error" id="SPELLING_ERROR_4">american</span> fashion, so i spent a few hours driving and walking around <a href="http://www.nps.gov/vafo/index.htm">valley forge</a>. honestly, i spent less time thinking about the torturous winter months of 1777-8 than about things like "i <span class="blsp-spelling-error" id="SPELLING_ERROR_5">wouldn't</span> have been able to walk up this hill 3 months ago" or "i don't even care how far away i park anymore". a different sort of introspection than the founders intended, <span class="blsp-spelling-error" id="SPELLING_ERROR_6">i'm</span> sure.<br /><br />to make it an even more <span class="blsp-spelling-error" id="SPELLING_ERROR_7">american</span> day, i proceeded to a mall. and not just any mall, but the vast, <span class="blsp-spelling-error" id="SPELLING_ERROR_8">unwieldy</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_9">megacampus</span> of <a href="http://www.kingofprussiamall.com/">king of <span class="blsp-spelling-error" id="SPELLING_ERROR_10">prussia</span> mall</a>. why did i do this, when i so obviously hate malls? i was looking for food. of course, i ended up parking on the complete opposite end from the food court, so i got plenty of exercise and wandered into plenty of stores for no apparent reason. in my travels i managed to acquire 1 <a href="http://www.chick-fil-a.com/#home">sandwich with fries and coke</a>, 1 <a href="http://www.twodollarradio.com/books-termiteparade.htm">crazy indie novel</a>, 1 <a href="http://us.levi.com/product/index.jsp?productId=3919185&kwCatId=&kw=507&origkw=507&sr=8&pid=PS000000&gclid=CJj8humZw6MCFd9n5QodKjw1aQ">dirt-cheap pair of jeans</a>, and 1 <a href="http://fastfood.ocregister.com/files/2009/05/starbucks-iced-coffee-211x300.jpg">iced coffee</a>.<br /><br />and that was about it. some history. some selfish introspection. and some consumerism. pretty darn <span class="blsp-spelling-error" id="SPELLING_ERROR_11">american</span>.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-17537979157697901052010-08-11T09:40:00.004-04:002010-08-11T09:58:28.139-04:00(bi)weekly medical updateyesterday (<span class="blsp-spelling-error" id="SPELLING_ERROR_0">tuesday</span>), i saw my doctor for the first time in a month. he'd been on vacation in <span class="blsp-spelling-error" id="SPELLING_ERROR_1">europe</span> while <span class="blsp-spelling-error" id="SPELLING_ERROR_2">i'd</span> been on duty in rehab. hardly fair, but what are you gonna do. he had been following along and giving orders from abroad, though.<br /><br />my lung function is no better or worse than it was 2 weeks ago. in a glass-half-full world, this is good news, because nothing is wrong and my lungs are already in better shape than they have been in 15 years. in my world, this is frustrating news, because i expect my lung function to improve beyond 46%, but it is constantly stagnating. <span class="blsp-spelling-error" id="SPELLING_ERROR_3">dr</span>. h. said the l-<span class="blsp-spelling-error" id="SPELLING_ERROR_4">fn</span> could improve for as long as 1 year before it levels off, or it could very well have already levelled off. the sound of his voice wasn't super-confident when he talked about my l-<span class="blsp-spelling-error" id="SPELLING_ERROR_5">fn</span> slowly increasing to 80%, but maybe <span class="blsp-spelling-error" id="SPELLING_ERROR_6">i'm</span> just projecting. anyway, only time will tell.<br /><br />and apparently time is about the only medicine for my recent g.i. issues. <span class="blsp-spelling-error" id="SPELLING_ERROR_7">i've</span> been having some severe stomach pain in the evening, after dinner, for which there is nothing to be done but eat a little less and wait. that strategy made sense to me two months ago, but now it seems a little inadequate. i really thought i was done with the stomach issues, but <span class="blsp-spelling-error" id="SPELLING_ERROR_8">they've</span> resurfaced the past couple weeks.<br /><br />there is good news, of course. news good enough that even i can't spin it negatively. blood sugars have been fine, so i am the rare case of a cf patient not developing diabetes post-transplant. rare as in less than 10%, as in only the second patient <span class="blsp-spelling-error" id="SPELLING_ERROR_9">dr</span> h has had in the past 5 years. so the plan is to still check it a few times a month, just so that i don't miss it developing at a later date (which could still happen), but otherwise i am free of that hassle for now.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_10">dr</span> h scheduled me for a <span class="blsp-spelling-error" id="SPELLING_ERROR_11">bronch</span> in two weeks (just to check everything out and be on the safe side). and otherwise just <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">occasional</span> blood work and less <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">occasional</span> chest <span class="blsp-spelling-error" id="SPELLING_ERROR_14">xrays</span> and office visits. so <span class="blsp-spelling-error" id="SPELLING_ERROR_15">i'm</span> just <span class="blsp-spelling-error" id="SPELLING_ERROR_16">chillin</span> in <span class="blsp-spelling-error" id="SPELLING_ERROR_17">philly</span> for the foreseeable future.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-29944303963977767922010-08-03T12:54:00.002-04:002010-08-03T13:12:50.382-04:00rehab is fintoday was my last day of pulmonary rehab. it took all of 6 weeks, and a gruelling six weeks it was. to complete the rehab, i did a <a href="http://ajrccm.atsjournals.org/cgi/content/full/166/1/111">6-minute walk </a>today (standard <span class="blsp-spelling-error" id="SPELLING_ERROR_0">eval</span> sort of thing). basically, you walk back and forth down a hallway for 6 minutes, with your oxygen saturation and heartbeat constantly monitored, and they measure how far you walk and how fatigued and out of breath you get. i walked 30% farther than i had at the beginning of the 6 weeks, and comfortably farther than i ever have before (<span class="blsp-spelling-error" id="SPELLING_ERROR_1">i've</span> been doing these periodically for many years). so i guess the rehab was worth it. now i just have to figure out my home exercise routine, and some sort of progression of exercise to get me from walking to running. tips/advice welcome.<br /><br />in other medical news, since <span class="blsp-spelling-error" id="SPELLING_ERROR_2">i've</span> been <span class="blsp-spelling-error" id="SPELLING_ERROR_3">ok</span> for the last week, they finally pulled the <a href="http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">picc</span> line</a>, so i am now completely unfettered. and <span class="blsp-spelling-error" id="SPELLING_ERROR_5">blood work</span> has been knocked down to once a week, doctors visits bi-weekly, and <span class="blsp-spelling-error" id="SPELLING_ERROR_6">xrays</span> every two or three weeks.<br /><br />so, i will be coming up to <a href="http://maps.google.com/maps?q=wayne+nj&rls=com.microsoft:en-us:IE-SearchBox&oe=UTF-8&rlz=1I7GGLL_en&um=1&ie=UTF-8&hq=&hnear=Wayne,+NJ&gl=us&ei=jk1YTJn5LoP78AaKzOitCw&sa=X&oi=geocode_result&ct=title&resnum=1&ved=0CB4Q8gEwAA"><span class="blsp-spelling-error" id="SPELLING_ERROR_7">nj</span></a> for a long weekend on <span class="blsp-spelling-error" id="SPELLING_ERROR_8">thursday</span>. ill be in <span class="blsp-spelling-error" id="SPELLING_ERROR_9">wayne</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_10">till</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_11">monday</span>, so if <span class="blsp-spelling-error" id="SPELLING_ERROR_12">you're</span> around....<br /><br />i think ill spend <span class="blsp-spelling-error" id="SPELLING_ERROR_13">wednesday</span> at <a href="http://www.philamuseum.org/">the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">philadelphia</span> museum of art</a>. ill probably be able to make it all the way up <a href="http://www.footytube.com/video/manchester-united-stars-climb-the-rocky-steps-52146">the rocky steps</a>, and then i can relax in front of some <a href="http://www.philamuseum.org/exhibitions/359.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_15">renoir</span></a>.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-91796686188905343152010-07-28T09:13:00.003-04:002010-07-28T09:30:53.189-04:00weekly medical updatehad yet another of the weekly doctor appointments yesterday. Dr H is still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">gallivanting</span> around <span class="blsp-spelling-error" id="SPELLING_ERROR_1">europe</span>, so i saw one of the nurse practitioners again. here's the rundown:<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_2">xray</span> is improved. after 3 weeks of antibiotics and the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">stent</span>, the pneumonia seem to be cleared up and the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">pneumothorax</span> has gotten a tiny bit smaller. and <span class="blsp-spelling-error" id="SPELLING_ERROR_5">i've</span> stopped the iv antibiotics, thought the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">picc</span> line is still in.<br /><br />all my drug/vitamin levels are within range, though the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">tac</span> level is at the low end, so may bump the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">tac</span> back up to 2.0mg.<br /><br />with the blood sugars totally under control, i can reduce the blood sugar checks (read: finger sticks) to twice a day, down from four times a day. if things stay stable over the next couple weeks, i can abandon the pseudo-diabetes blood-sugar-check behavior altogether.<br /><br />my lung function was up to 49% (from 45%). good to see it moving up again. let's hope it stays moving in that direction.<br /><br />and, the biggest news of all, next week will mark the end of rehab. just a few more sessions and <span class="blsp-spelling-error" id="SPELLING_ERROR_9">i'm</span> out of there. i will have completed the prescribed number of rehab sessions, and <span class="blsp-spelling-error" id="SPELLING_ERROR_10">i've</span> pretty much peaked in terms of how much they can exercise me in their little gym, so i will be released out into the world to fend for myself. which means i have to come up with some sort of self-motivated exercise routine.<br /><br />that's about it on the medical front. <span class="blsp-spelling-error" id="SPELLING_ERROR_11">i'm</span> not due for another check in with the doctor for two weeks, so the weekly medical update may become a bi-weekly medical update. or it may just be totally irregular.<br /><br />in <span class="blsp-spelling-error" id="SPELLING_ERROR_12">nonmedical</span> news, i am home alone, shockingly surviving on my own once again. <span class="blsp-spelling-error" id="SPELLING_ERROR_13">i've</span> officially begun the period of my renewed independence, and what was formerly my parents' bedroom is now officially the guest bedroom. (sorry, mom and dad. but thanks for being here when you were. you are still allowed to come visit.) i have slipped pretty easily back into my living alone routine; it's nice to know that it still comes easily after all this time.<br /><br />i hope you all have a lovely <span class="blsp-spelling-error" id="SPELLING_ERROR_14">wednesday</span>.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com4tag:blogger.com,1999:blog-6051925427475900025.post-76126177305918396032010-07-24T08:36:00.003-04:002010-07-24T08:57:52.927-04:00Friday Is Bronchday IIbecause nothing starts the weekend off right like an afternoon <span class="blsp-spelling-error" id="SPELLING_ERROR_0">bronchoscopy</span>, Friday is <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Bronchday</span>.<br /><br />so this time, the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">bronchoscopy</span> (#4 since transplant, in case <span class="blsp-spelling-error" id="SPELLING_ERROR_3">you're</span> counting) was supposed to be at 2:30. which sounds nice until you consider that the patient must <a href="http://redpox1st.files.wordpress.com/2008/08/before-and-after-seven-days-fast2.jpg">fast</a> starting at midnight the night before. 2:30 being what it is, i cheated slightly and took my morning <span class="blsp-spelling-error" id="SPELLING_ERROR_4">meds</span> with 6oz of black coffee. harmless.<br /><br />so i planned to be at the hospital to check in around 12:30, though i had received no call the night before to confirm. well, at 11a, dad got a call at home from the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">interventional</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_6">pulmonology</span> folks to tell me that they had been expecting me at 10:30. so mom and i scrambled to get out the door, and i checked in about 11:20. good thing, too, because then i had to wait 3.5 hours until the procedure. (that brings my total for the week to 8.5 hours in hospital waiting rooms. [it could be worse, <span class="blsp-spelling-error" id="SPELLING_ERROR_7">jim</span>, i know.])<br /><br />but in the end, the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">bronch</span> went as well as could be. they removed the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">stent</span>, and the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">dehiscence</span> in the left <span class="blsp-spelling-error" id="SPELLING_ERROR_11">anastomosis</span> had healed well enough that they did not have to put another <span class="blsp-spelling-error" id="SPELLING_ERROR_12">stent</span> in. so good news that things are healing and good news that i wont have to undergo another <span class="blsp-spelling-error" id="SPELLING_ERROR_13">bronch</span> for 6 weeks or so, provided no more bumps in the road. while they were in there, they cleaned up a few secretions and whatnot, but nothing major. so the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">dehiscence</span> is healed and the lungs look nice and clean.<br /><br />good thing i <a href="http://chrisdohenysjourney.blogspot.com/2010/07/sans-beard.html">shaved off the beard </a>last weekend.<br /><br />so on to the weekend: a little housewarming party at my cousin's this afternoon (and the house will be warm: <a href="http://www.weather.com/weather/alerts/localalerts/19103:4?phenomena=EH&significance=W&areaid=PAZ071&office=KPHI&etn=0005">heat index to 110 </a>here in <span class="blsp-spelling-error" id="SPELLING_ERROR_15">philly</span> today), and then some long awaited visitors on <span class="blsp-spelling-error" id="SPELLING_ERROR_16">sunday</span>.<br /><br />for now, it's back to my <a href="http://www.oldcitycoffee.com/">coffee</a>.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-68352793653775400312010-07-20T17:27:00.003-04:002010-07-20T17:40:56.067-04:00weekly medical updatethere's good news, and there's <span class="blsp-spelling-error" id="SPELLING_ERROR_0">notgood</span> news.<br /><br />the good news is, the driving restriction has been lifted. in and of itself, this is maybe not huge. but it is the first step to resuming independence. and it's nice to take a step in that direction. it was also nice to actually drive my car for the first time in 6 weeks or so. it's just like riding a bike. and i <span class="blsp-spelling-error" id="SPELLING_ERROR_1">didn't</span> hit any cyclists on the way home from rehab.<br /><br />the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">notgood</span> news is, my lung function has plateaued again, i have another <span class="blsp-spelling-error" id="SPELLING_ERROR_3">bronch</span> scheduled <em>this</em> <span class="blsp-spelling-error" id="SPELLING_ERROR_4">friday</span> to swap the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">stent</span>, and the IV antibiotics have been extended another week. so none of that is much fun.<br /><br />the CT scan did show a decrease in the pneumonia and <span class="blsp-spelling-error" id="SPELLING_ERROR_6">pseudomonas</span> colonization, but the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">bronch</span> last week seems to have rustled up some junk in my left lung, which is why they're playing it safe and extending the antibiotics. of course, if the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">bronch</span> does that every time, <span class="blsp-spelling-error" id="SPELLING_ERROR_9">i'm</span> going to be stuck in an endless loop of IVs and <span class="blsp-spelling-error" id="SPELLING_ERROR_10">bronchs</span>. unlikely, of course. but <span class="blsp-spelling-error" id="SPELLING_ERROR_11">i'll</span> feel better when the lung function is climbing again and the <span class="blsp-spelling-error" id="SPELLING_ERROR_12">bronchs</span> are less than a regular <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">occurrence</span>.<br /><br />also, they'll be taking another biopsy during this <span class="blsp-spelling-error" id="SPELLING_ERROR_14">bronch</span> to check for rejection. which is not standard procedure, so <span class="blsp-spelling-error" id="SPELLING_ERROR_15">i'm</span> wondering why in particular they made that decision.<br /><br />anyway, dad is heading home tomorrow on <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">the</span> train, so i will be on my own -- for the first time in a long time -- until....<span class="blsp-spelling-error" id="SPELLING_ERROR_17">thursday</span> night. then mom comes back down because i need a ride to/from the <span class="blsp-spelling-error" id="SPELLING_ERROR_18">bronch</span>. but i guess 36 hours of independence is a nice test run.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com2tag:blogger.com,1999:blog-6051925427475900025.post-80593424271883416102010-07-18T09:42:00.003-04:002010-07-18T09:49:18.403-04:00sans beardthe beard is gone.<br /><br /><a href="http://www.thesportsdish.com/?p=126">playoff beards </a>are supposed to bring you good luck and keep you on a hot streak. right now the only streak i'm on is one of unsatisfying bronch results. so yesterday i nixed the rehab beard, 'cause it aint doin' me any favors.<br /><br />that is all.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-10157751987195640082010-07-16T11:37:00.003-04:002010-07-16T12:01:11.558-04:00Friday is Bronchdaybecause nothing starts the weekend off right like a 6am bronchoscopy, Friday is Bronchday.<br /><br />we -- mom and I -- got to the hospital at 6am on the dot, sans morning coffee (fasting for bronch). well, mom had coffee. i had pills. through admission and gowned by 6.30a.<br /><br />then we talked to the interventional pulmonologist, Dr G, and his fellow, whose name ive already forgotten, so we'll call him Dr NA. this bronch was to be a lot more involved than the last one, with the possibility of inserting a stent (if the dehiscence hasnt improved) and the possibility of having to do a rigid bronch (which involves inserting a stiff metal tube down the throat, into the airways, through which the Dr can use things like forceps and cameras and various tools that one should not normally have shoved down ones throat). either way, Dr G informed us that this was very likely the first of a long series of bronchs (news to me) over the course of the next few weeks or months until everything looked copacetic, at which time i could go back to having just the regularly scheduled bronchs through the transplant clinic (which is where the first one was, two weeks ago). since they were playing the whole procedure by ear, depending on what they found when they peeked inside, it could take an hour or 4 hours or anything in between.<br /><br />and with that lovely news, i was rolled into the OR and pleasantly shoved into a drug-induced nap.<br /><br />did i forget to mention the baby-faced medical student who got to hold the oxygen mask? i hope he didnt get to do anything else while i was passed out, because honestly he couldnt have been over 13. i refrained from all doogie howser jokes, though. arent you proud?<br /><br />i spoke to Dr NA a couple times after they woke me up (procedure < 60min.) heres the deal: they put in a temporary stent; rigid bronch was not necessary; there was very little cleaning inside the lungs necessary.<br /><br />the idea behind the stent is to promote the formation of tissue in the left anastomosis in order to solidify and widen the airway. in 2 weeks, theyll go in again, and take out this stent and replace it with another to further widen the airway. this will be done ad nauseum every two weeks until they are satisfied with the state of the airway. as far as i can tell, it might be done 2x or it might be done 20x. all depends on the healing.<br /><br />as for the cleaning out, the fact that not much was necessary is the good news for the day. very little pseudomonas colonization and mucus clogging. im hoping this means the ivs can be stopped next week, but Dr NA could provide no guidance on this.<br /><br />now i am home, finishing cup of cafe dos. no plans this weekend. it might be too hot to go outside, ever. we shall see.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-87280728681546068442010-07-14T08:42:00.003-04:002010-07-14T08:59:41.092-04:00Weekly medical updateIt's that time of the week again: time for the weekly medical update.<br /><br />Dr H is on vacation in Greece or someplace, so this week's appointment was just with B, my nurse practitioner.<br /><br />Things seem to be moving in the right direction. My stomach issues are nearly entirely resolved. Potassium level is back to normal. Tac level is a little low, so we are upping the tac dose. Lung function is moving up again after a week-long plateau and is now at 45%.<br /><br />The big questions will be answered on Friday when they do the bronchoscopy. Depending on what they see when they go in there, they may put a stent in the left anastomosis if the dehiscence is not healed/healing. The look of the bronch will also determine whether or not they continue the IV antibiotics beyond the initial two weeks. Obviously, I'm hoping for no stent and no more IVs.<br /><br />In News of Christopher's Eventual Independence, the ban on driving will be lifted next week. This is the first step in kicking my parents out of the apartment they found me and resuming something close to independent life. Mom and Dad have been great, and I couldn't have done any of this without them, but I'm pretty eager to make my way back to life as normalish.<br /><br />MT, my old neighbor, came down to visit last night. So I got a healthy dose of old Wayne. Oh, and cupcakes. Today DD is coming down, so I will be cheerfully entertained all day. And then back to rehab on Thursday. Bronch on Friday. What fun.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-66221203193051100402010-07-11T17:46:00.002-04:002010-07-11T17:53:01.155-04:00Obligatory postThis is an obligatory post, because it's been a few days and I don't want any of you thinking something terrible happened. All, in fact, is well.<br /><br />CN came to visit for the weekend and We spent lots of time watching the last two world cup games and walking around aimlessly and just generally doing lots of nothing.<br /><br />Next week's schedule: blood work, rehab, xray on Monday; rehab and appointment with my NP on Tuesday; blood work, rehab, and xray on Thursday; and another bronchoscopy on Friday to see if the dehiscence has improved.<br /><br />That is all. Have a lovely day.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-90750237184700854972010-07-07T21:37:00.003-04:002010-07-07T21:52:25.049-04:00monthiversarytoday is exactly one month from the transplant. it is also exactly one year from when everything went downhill, and i got hospitalized and started the final listing process.<br /><br />[i suppose i am supposed to be reflective. or something. but <span class="blsp-spelling-error" id="SPELLING_ERROR_0">i'm</span> not. probably because i am still in the middle of it all, so i have very little energy to start looking back at this point. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">i'm</span> not in hindsight 20/20 territory yet. so we'll leave that for another day in the (hopefully n<span class="blsp-spelling-error" id="SPELLING_ERROR_2">ot</span>-too-distant) future.]<br /><br />to celebrate i refrained from any physical contact with any medical <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">personnel</span> and maintained a strict 1 mile <span class="blsp-spelling-error" id="SPELLING_ERROR_4">dmz</span> between myself and the hospital. though i did have to field about half a dozen medical-related phone calls. which was a little excessive.<br /><br />but i did get some good news. the biopsy <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">results</span> from my <span class="blsp-spelling-error" id="SPELLING_ERROR_6">bronch</span> last week came back and there is NO rejection. which is a welcome relief, considering treating the rejection is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">counter intuitive</span> to treating the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">dehiscence</span> in the left <span class="blsp-spelling-error" id="SPELLING_ERROR_9">anastomosis</span>. also, my <span class="blsp-spelling-error" id="SPELLING_ERROR_10">tac</span> level has finally settled into the proper range, so i won't have to adjust the drug levels.<br /><br />nice to get some good news after the past week.<br /><br />tomorrow, it's back to rehab.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com1tag:blogger.com,1999:blog-6051925427475900025.post-88859870523862086502010-07-06T20:54:00.003-04:002010-07-06T22:07:31.000-04:00discharge (again) and weekly medical update (again)yesterday was a pretty good day, considering i was stuck in a hospital room. AC (not the city) came to visit, so dad got most of the day off (minus <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">chauffeuring</span>) and i spent the better part of the day entertained and distracted by AC (once again, not the city). she brought a <a href="http://www.rocketsnail.com/mancala/classic.htm"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">mancala</span></a> board, which i will now force all visitors to play with me. so click the link and read up, because you <span class="blsp-spelling-error" id="SPELLING_ERROR_2">don't</span> want to embarrass yourself.<br /><br />today, however, was mostly <span class="blsp-spelling-error" id="SPELLING_ERROR_3">antigood</span>. i spent most of it sitting in my hospital room just <span class="blsp-spelling-error" id="SPELLING_ERROR_4">waiting</span> for the folks at the hospital to get their act together and get everything ready for discharge. by 10am, they had made the decision to discharge me, but i <span class="blsp-spelling-error" id="SPELLING_ERROR_5">didn't</span> actually leave the hospital until after 6pm. so it was kind of a long and frustrating day of very little progress.<br /><br />which is kind of how the entire last week has been. instead of feeling a little better every day, i have stalled out and really <span class="blsp-spelling-error" id="SPELLING_ERROR_6">don't</span> feel any better than i did a week ago, and the test numbers and images confirm it. in the past week <span class="blsp-spelling-error" id="SPELLING_ERROR_7">i've</span> had about 6 chest <span class="blsp-spelling-error" id="SPELLING_ERROR_8">xrays</span>, a chest ct, and a <span class="blsp-spelling-error" id="SPELLING_ERROR_9">bronchoscopy</span> with a biopsy. the results of the biopsy still have not come back (the point of the biopsy is to see if there is any rejection, <span class="blsp-spelling-error" id="SPELLING_ERROR_10">btw</span>), but from all the rest they have determined:<br />1. the suture rupture in the left <span class="blsp-spelling-error" id="SPELLING_ERROR_11">anastomosis</span> is a major issue. with only the one <span class="blsp-spelling-error" id="SPELLING_ERROR_12">bronch</span>, we cannot tell if it has started to heal, so there will be another <span class="blsp-spelling-error" id="SPELLING_ERROR_13">bronch</span> likely in the next week. if things do not improve, they may have to insert a <span class="blsp-spelling-error" id="SPELLING_ERROR_14">stent</span> to promote some scar tissue. in the meantime, the <span class="blsp-spelling-error" id="SPELLING_ERROR_15">prednisone</span> has been lowered (which is good for the blood sugars, but bad for possible rejection) in order to help the healing process;<br />2. there is definitely <span class="blsp-spelling-error" id="SPELLING_ERROR_16">pseudomonas</span> present. can't tell for sure if it is new and active or an old colonization, so we are pumping me full of iv <span class="blsp-spelling-error" id="SPELLING_ERROR_17">antibiotics</span> (which i was sort of hoping to be rid of after transplant) and some <span class="blsp-spelling-error" id="SPELLING_ERROR_18">nebulized</span> antibiotics (another thing i was hoping id never see again: <span class="blsp-spelling-error" id="SPELLING_ERROR_19">nebulizers</span>);<br />3. the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">pneumothorax</span> has not gotten worse, but it has not improved. if it gets any larger or starts to leak into other parts of the lung, they may have to put a chest tube in (another thing i thought i was rid of) to drain the pleural fluid.<br /><br />in the meantime, i am home at least, on iv <span class="blsp-spelling-error" id="SPELLING_ERROR_21">antibiotics</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_22">nebulizers</span> and some extra oral <span class="blsp-spelling-error" id="SPELLING_ERROR_23">meds</span> for at least the next two weeks.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_24">dr</span> h summarized the situation as: a "significant step back/bump in the road", but one he expects me to fully recover from and move on from.<br /><br />so that is that. i am mostly worn out, though i think it's more psychological than physical.Chrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com3tag:blogger.com,1999:blog-6051925427475900025.post-41885506100233729872010-07-05T08:34:00.001-04:002010-07-05T08:34:39.293-04:00Yesterday was long and boring. The morning brought unnecessary alarm <br>bells and the afternoon brought hours of playing rummy 500 with mom.<p>In the morning one of the residents informed me that there was fluid <br>in my lungs, filling the pneumothorax, and that my hemoglobin was <br>getting dangerously low. Turns out the hemoglobin was probably a lab <br>error (reran the test and number was ok) and after hours of fretting, <br>the attending informed me that fluid filling the pneumo was perfectly <br>normal, and everything was going as expected. The pneumo hadn't gotten <br>bigger so there was nothing to worry about.<p>Then, hours of the ongoing card game with mom. I forget who's winning.<p>I slept through the fireworks, sort of. Mom, dad, and Aunt E watched <br>them from the hallway with a bunch of other patients.<p>That's it. Usual blood work and chest xray planned today.<p><br>Sent from my iPhoneChrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0tag:blogger.com,1999:blog-6051925427475900025.post-73102368006309398492010-07-03T20:46:00.001-04:002010-07-03T20:46:57.854-04:00Male nurse dayToday was male nurse day in Founders 1476. I actually like having the <br>occassional male nurse: it's a nice change of pace. This guy was like <br>a toned down version of the case-of-the-Mondays waiter in Office <br>Space. Actually I kinda like the guy, but he said "these guys" way to <br>much. As in, You gotta take these guys first, referring to some pills. <br>And, I gotta hook this guy up, referring to an IV antibiotic. As I was <br>wheeled away for my kafkaesque trip to radiology for a chest xray he <br>actually said, I'll catch you on the flippy. No joke.<p>But he was a solid nurse. The newly annointed residents are another <br>story. I have them to thank for being underdosed on pain meds all <br>afternoon. Not that I'm in unendurable pain, but I could stand to be <br>in a bit less. Coaxing from me and badgering from the Dad eventually <br>got it resolved, but I'm not sure how many days of this I can tolerate.<p>Chest xray supposedly (read by first year resident) showed improvement <br>and, as the Dad continues to remind me, the fatigue issue seems <br>resolved, so I guess things are headed in the right direction. <br>Prednisone has been reduced to help fight infection, but the tac level <br>is still hard to pin down.<p>All my meds make me so shaky it's hard to type on the ol iPhone, so <br>until tomorrow.<p>Sent from my iPhoneChrishttp://www.blogger.com/profile/06782960931980314139noreply@blogger.com0