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Home at Last
November 14, 2011 - Mark Miller
After a release procedure that seemingly went on all day, Hal got home tonight at about 6:30 (looking a little like he'd just returned from a 4-stop flight from Turkey). It was incredibly nice to see him moving around without being tethered to Mr. Tank (who will be unceremoniously returned to the Tank Rental People this week).
Hal was sent home with a bag full of various drugs; acclimating to the drug regimen will be one of the tasks in front of him over the next weeks. But insulin is not among them, which is really good news. Diabetes is very common with anti-rejection drugs, but for now at least, Hal seems to have escaped that risk.
I want to thank everyone again who has helped out with various things in Hal's life during this past year or so. It's been an inspiring story to watch... in real life. Thanks also to all the friends who have donated to the "Hal Fund". I know Hal appreciates and is moved by all the support.
Finally, we should thank Dr. Jasleen Kukreja, Assistant Professor, Department of Surgery (Adult Cardiothoracic Surgery) at UCSF, and her team. Dr. K. was Hal's lead surgeon, and judging by the result, I suspect she is extremely good as what she does. If you ever read this, Dr. Kukreja: from the several hundred people here who love Hal, thank you for saving the life of our friend!
Dr. Jasleen Kukreja
Hal's Release is Delayed
November 10, 2011 - Mark Miller
Well, as we all know, estimates are just estimates until they come true. As some of you know, Hal wasn't released mid-week like he hoped. The main issue seems to be excessive air in the chest cavity. This is an exerpt from one of Hal's emails:
"Today's bronchoscopy was clean as a whistle. Xray was clear amd all vital stats normal. Last remaining drain still has output; hence is still in place. Date of removal unknown. Date of discharge is dependent on removal of tubes. The source of the chest air pockets is suspected to have come from one of the big drains removed yesterday. The seal was not 100%... that's the theory. They have ruled out any problems with the ribs or lungs causing the air. They are watching it closely. One doctor suggested I'd be here over the weekend. That's subject to change.
"Exciting stuff: washed my hair. Lunch came with a soda and real food, not all this beige stuff I had. Few are confident that I'll need to depend on insulin post discharge. My blood sugar level is normal."
So, all in all, things are still good. I suppose it's ridiculous to expect there would be no bumps along this road. Hal sent this picture of his erstwhile companion, Mr. Tank:
Hal: "Mr. Tank is chipper, happy-go-lucky. He hooked up last night. They are just "the couple" since the state wont let them marry.
Michael M: Hot! I can sense there's going to be a lot of heavy breathing between those two!
Release this Wednesday is Likely
November 6, 2011 - Mark Miller
He's Back!
I dropped by to visit with Hal on Sunday afternoon. Sister Val and Niece April were there as well. It looks like the release date is going to be Wednesday now. Nothing really has changed... Hal's recovery continues, and he's getting stronger. This was my first visit since the operation where Hal was completely out of bed. He's moving around pretty well, too.
One of the main things that will determine when he's released has to do with drainage. Yes... unfortunately, we're talking basic plumbing! (Well, not really basic plumbing... this is advanced plumbing.) There's a process that happens after lungs are transplanted, where small amounts of tissue will die and be discarded. There's an immune response to this that causes fluid to accumulate, and that fluid is drained via an installed port. The port has to stay in until the fluid reaches some minimal level... and Hal's almost there (but not quite).
Hal is in pretty good spirits, and I know is looking forward to moving on to the next phase of this drama. I don't know (and he really doesn't either), exactly how the next few weeks will go. My best guess is that he'll need to continue to minimize people contact for awhile. So text messages and emails will probably continue to be the best way to communicate. It will probably be best to let Hal make the decisions to call, and maybe arrange for visiting. (The concern about allergens, viruses, etc, continues. We're moving into cold season, so for sure, never visit if you're feeling sniffly!)
For his efforts, Hal got this really nifty cap from the hospital (it says UCSF Heart & Lung Transplant). It's very fashionable, but clashes with his moo moo (he doesn't care):
And then there's this T-Shirt, which is almost worth the price of admission:
I've been deeply moved by the events of this past week. Less than eight days ago, I got a call from a Surgical Nurse in the middle of the night. There was a bit of miscommunication, and because I was half-asleep, and the call was several hours earlier than expected, I thought I was being told that Hal had died on the table. I broke down, and that was my 'bottom'. While the miscommunication only lasted a few seconds, that memory will stay with me forever. I have never felt the fragility of life in quite that way before.
I went from that bottom, to being elated and grateful just 24 hours later, as it became clear that Hal was doing well. I haven't fully absorbed all this yet, but I sense that it's really important. I know there are lessons here for all of us who have been close to Hal, if we choose to take them in.
Hal has Luxury Resentments... He's Getting Better
November 4, 2011 - Mark Miller
I was down in Santa Barbara on business today, but Hal and I traded a few text messages. He said he hopes to be discharged this Monday afternoon. He still has some drainage tube in, which hurts, but his lungs are clear (which is a big deal... or rather, the absence of a big deal).
He says he's feeling stronger. In fact the Prednisone he's on is producing some 'roid rage. At least he's got a good excuse for his resentments! ("hate this, hate that; stupid hospital... gazillion dollars a day for a room and no flat screen or phone reception, blah, blah, blah...". When the flat screen TV is on the complaint radar, you know somebody's really on the mend!
His sister and niece will arrive Saturday, and Val will start settling in and preparing for Hal's release next week. He said he's started learning his med routine and diabetes testing (diabetes is a constant threat with the meds he'll be on).
And that's all the news that's fit to print, for now. Thanks to David and Andy for helping prepare Hal's apartment. And a big thank you to the many people who have contributed to the "Hal Fund". Hal doesn't even know that quite a bit of money has come in since the surgery. I'm sure he'll get emotional about it... and it will really help over the next few months. Such friends!
Communication with Hal in the Hospital
November 2, 2011 - Mark Miller
When I saw Hal tonight (see next story), I asked him about all the following (and also talked a little to one of the nurses in the ICU, from which he was just transferred). Here's the situation.
Text Messages: Hal has started sending a few text messages. He said it was fine if people want do that... but don't be surprised if you don't get a reply for a while. He might be having a procedure done (there are a lot of those), or may just be talking to someone else. Hal's really trying to pace himself (slow)... just one little thing at a time (which is why, I think, he's weathering this whole thing so well). Also, since there are potentially so many people involved, please limit this to just one text exchange, unless Hal is feeling frisky and clearly wants to continue. (If 10 people want to do back-and-forth and back-and-forth some afternoon, that's obviously going to be hard.)
Phone Calls: Although he clearly values the friends that have called so far, Hal would prefer to call, rather than be called right now. I think it just gets a little overwhelming, depending on what else is going on at the time.
Emails: are fine, but he doesn't have his laptop, and wireless is notoriously spotty at UCSF. His smart phone usually works, but it's hard to do much emailing from the phone.
Cards: I almost forgot about old-fashioned cards. This is a great way to reach out... but better get them in the mail soon; Hal may be released early next week. Actually, it would probably be better to just send cards to Hal's apartment... 640 Mason St., Apt. 208, SF 94108. I'm not sure of the protocol for patient incoming mail at UCSF... and he'll be home soon anyway. (Flowers, by the way, are out of the question; the nursing staff probably wouldn't let them in the room. Hal's always had allergen problems anyway... but in this situation, flowers could be disastrous. Sorry.)
Visits: Now for the really bad news! It looks like visiting in person just ain't in the cards for this hospital stay. There's a medical reason: his immune system is suppressed by anti-rejection drugs, which of course will be true from now on. In the future, he'll have protocols to follow which aren't too restrictive, but in the very early going, right after surgery, so much is going on in his body that he has to be extraordinarily diligent about limiting his exposure to germs, viruses, allergens etc. (I stayed 10 feet away from his bed tonight, to be on the safe side.)
So that's it. I don't like being the one to relay all this restrictive detail... but someone has to, and I guess it's my turn. And I know this detail is mostly relevant to closer friends of Hal. Probably most readers are happy to wait a month or two until they see Hal in his next meeting... and that's great too.
Hal Gets Excellent "Performance Review" from UCSF
November 2, 2011 - Mark Miller
Unlike all those nasty performance reviews he used to get at work, back in the old days, today Hal's "performance" was rated excellent... "exceeding all expectations", even. Sheesh... all the positive energy that's been surrounding him through this ordeal really seems to be working! I visited for about 45 minutes tonight, peppering him with questions as the giant meatball on his plate just sat there staring at him. When hospital food is on the complaint radar, you know somebody's on the mend!
The unusual anatomy of Hal's new lungs continues to be a topic of great interest. Via a bronchoscope, teams of doctors have huddled around his bed... ooooh-ing and aaaah-ing. But unusual or not, they really seem to be working well for him. Every test confirms a good fit... these new lungs seem to have good karma. Hal said "it's hard to explain, but as of yesterday, I feel like I've taken ownership of the lungs. They feel more like they're mine." This means his brain is adjusting to the new lung capacity.
Today he was transferred out of the ICU to a private room, also on the 10th floor. He made the walk himself, which is quite unusual, and indicative of his progress. (He was able to take 3 walks both yesterday and today.) Later in the week they'll take Hal off the epidural... a pain med switch. So that will be the next big adjustment. (The pain, by the way, is largely surface pain... from the surgical incisions and all the holes for tubes and wires!)
At this point, it looks likely that he'll be released early next week. His sister Val will be staying with him for 6 weeks (a necessity for the transplant protocol). And that's it for now. I still can hardly believe how well Hal's recovery is going. This is a major, major league operation... to me, it just seems like a miracle.
Latest on Hal
November 1, 2011 - Mark Miller
I talked to Hal's sister Val this afternoon (who has been at the hospital pretty much this whole time). Hal continues to improve. Today he walked around for about 10 minutes, so he's starting to have options other than just laying immobile in bed. (Sometimes, when I get really busy, that idea... nothing to do but stay in bed all day... just sounds so attractive to me! But if you feel bad, and can't really move at all, it's more akin to torture.)
The "hold" on phone calls, emails, texts, tweets, visits and carrier pigeons is still in effect. This is not me, by the way, playing the coveted role of Nurse Ratched / Security Chief! I'm just relaying the reality of a tough situation... from the ICU staff, common sense, and Hal himself. He just doesn't have the strength to deal with many people right now. But that will change soon enough... and again, I'll let everybody know when he says he's up to it.
Hal said he's heard that it's possible they might actually release him early next week, or even this weekend (which would only be a week, post-op). I don't know about that... it always freaks me out how quickly people are released after major surgeries now. (But at $18 million dollars a day, I'm sure they're just trying to save the patient money! Ha.) Seriously, it is possible Hal will be released before the 2 week estimation, if he continues to improve at the rate he is now. More later...
Halloween Visit
October 31, 2011 - Mark Miller
I saw Hal for a half hour tonight. He's uncomfortable, of course. I wouldn't say he's perky... but he's definitely lucid! He's got a zillion tubes and wires attached to him right now, so he can't just hop out of bed, or even adjust his position very much. (He said he's really glad he got into Zen practice last year!) It's really important that everyone hold off on calling him at the hospital. Hal doesn't have access to his cell phone, but there's a phone in the room, of course. A few people have called, and I'm sure it's appreciated... but it's just really hard right now. He can't reach for the phone (and I think just holding a receiver is difficult from what I saw). So please wait until he's out of the ICU, which should just be 2 or 3 days.
The walking that his sister was talking about this afternoon was actually a big production --unhooking a lot of things so he could slowly walk up one isle of the ICU. But that's still really impressive just a day after surgery.
One of the most interesting things he mentioned is something that never would have occurred to me: after several years of breathing with very defective lungs, and being on oxygen this past year, his brain adjusted to the dysfunction. (I vaguely remember something about that in my past!) He says his breathing just seems very strange now. It's not a problem with the lungs... it's an adjustment his brain has to make. He said he constantly catches himself breathing like he was before the operation, and has to make a conscious effort to breathe normally! That would be strange... but it will just take a little time for his brain to adjust. (Other lung transplant patients report the same thing.)
One more strange factoid: during the surgery, a structural abnormality was discovered in the donated lungs. It isn't anything serious... but it is a medical oddity. The lungs contain what's called the bronchial tree, the major branches of which have names. One of Hal's new lungs has an extra branch. Like I said, it won't cause any problems (and might even result in additional lung capacity), but it did cause great excitement. Hal's extra bronchial branch doesn't have a medical name... so, of course, Hal named it "Harry". I doubt Ripley's would be interested, but perhaps Hal and Harry will end up in some anatomy textbook someday!
Hal sends his love to everyone, and I'm sure is looking forward to when he can visit. More tomorrow...
Stop the Presses. Hal Gets Out of Bed!
October 31, 2011 - Mark Miller
Just a quickie update. I haven't actually seen this with my own eyes yet, but Val reports that Hal is actually walking around, offering snarky comments about the ICU! Actually, I think I'm making that last part up (but maybe not!)
Val said Hal's main complaint right now is of back pain, probably because his RA (Arthritis) meds had to be adjusted, for now. But he's cracking jokes about his "pain plunger" (use your imagination), etc.
The lead surgeon stopped by this afternoon, and told Val she was extremely happy with the operation. She said Hal's condition so far is "outstanding".
I am so happy. Judging by how Hal seemed yesterday afternoon, I would have guessed it to be days before he could even talk! I'm going up to see him this afternoon, and may have a good estimate as to when he can take calls or visits tonight. Keep the faith!
Surgery a Success - Hal Feels Like Crap Anyway!
October 30, 2011 - Mark Miller
As many of you know, Hal's surgery was yesterday. It was a success, and Hal is in the 10th Floor ICU at UCSF Moffitt/Long Hospital... probably feeling about like what you'd expect. I just talked to his sister, Val, who's in the room with him. She said he shook his head definitively when I asked how he felt. Through Val, I told him I loved him, and reminded him that lots of other people do too, and that it will feel different tomorrow. (How many times have we used that line... for others and ourselves!? It has the advantage of almost always being true, and in this case is great news!)
Email - Sunday, Oct. 30,
OK... one more email. (I may have to postpone updating the blog until tomorrow; frankly, I'm exhausted, and need to get some sleep!) So please check in with the blog http://www.friendsofhal.blogspot.com/ tomorrow.First of all, the attached pic is yesterday, while we were waiting. (If you look carefully, Mr. Tank is getting a taste of his own medicine.)
I just came from UCSF. Hal looks absolutely horrible... I'm mean, I wasn't expecting Iona Trailer in her best moo moo, or anything. But I was still taken aback. Nonetheless, the nurse on his case gave me a pretty full update, and she says he's doing great. He'd just gotten an epidural (for pain). She said they will probably take his breathing tube out later today, which is great. He's very weak, but he squeezed my hand, and could open his eyes... and I could tell he really wanted to spew a sardonic comment or two, but couldn't. I cried... it was surprisingly emotional (don't know why I was surprised).
But again, the reports I've heard so far is he's doing very well. The surgery was 'straight through', without complication, which I assumed because it was two hours quicker than they estimated.
So just wanted to keep keep everyone informed, now that I've actually seen him. I've got to change what I said last night. For those of you who are close to Hal: I know you want to reach out, but I'm sure he won't be taking calls for at least a day (maybe more), and visiting will probably have to wait 'til he's out of the ICU... which they said will be 2-4 days. (Again, check in with the blog.)
That's it. Thanks to everybody for caring. I'm hoping to have the A New Pair of Lungs Party at my place, maybe in December, while Hal's sister is still in town. Will let you know.
--Mark
--Mark
Email - Sunday, Oct. 30,
Just a quick status...
Hal's OK, and out of surgery!! I got a call at from the lead surgeon, who said he's breathing pretty well. I'll be posting the long version of that story (there's always a long version!) on Hal's blog eventually (see link below). I'll also post emailed comments I'm getting back... so feel free to email (or cc me on your message to Hal). It'll be nice to have that all in one place, for everyone... and Hal, when he feels up to looking at a screen.
Hal's sister is on Amtrak right now; we'll be going up to the ICU early this afternoon, and will get a more complete status. This will probably be the last old-fashioned email blast from me. After this, go to Hal's blog: http://www.friendsofhal.blogspot.com/
Yay and Yahoo!
Mark
Email - Sunday, Oct. 30, 1:40
Email - Sunday, Oct. 30, 1:40
Hi everybody...
As many of you heard, Hal got the call late Saturday morning from UCSF to prepare for the lung transplant. Like the last time, there was a lot of waiting at the hospital... but this time, the surgery is a GO! The operation just started about an hour ago, and should be completed sometime around .
I doubt that Hal will be up for visitors for at least the first day after the surgery... but if you want, you can try calling his cell, maybe toward evening Sunday (or you can check with me at 415-355-0575. (I'm just guessing here... for all I know, he may be pretty out of it for days.) He will be in the ICU on the 10th floor at UCSF (Moffitt/Long) for at least the first few days after surgery. The total hospital stay will probably be around 2 weeks.
With organ transplants, half the equation is always a tragedy (though at this point, an anonymous one). I understand that today's lung donor was young (20's I think) and gay. It's possible that at some point, the family of the donor will choose to contact Hal (they are encouraged but not pressured, of course, to do so). I know that Hal is open to that. Hopefully the surgery will be a complete success, and friends or family of the donor will eventually be able to take some comfort in getting to know the incredible man whose life has been saved. That's my prayer tonight.
Thanks to all,
Mark
False Alarm!
July 13, 2011 - Hal Hansen
On Monday, June 27th, 2011, I received a call from the nurse/coordinator at UCSF Medical Center Lung Transplantation clinic. Having been on the transplant waiting list for only 3 1/2 months, I was a bit surprised when she asked me to report to UCSF as possible donor organs were available. My oldest friend in San Francisco, Mark Miller, met me there. I was admitted and prepared for surgery. Unfortunately, as the day progressed, it became clear that there were some issues with the donor lungs and we decided to not go forward with the procedure. We anticipate with confidence that in due time another better opportunity will present itself.
During the eight hours I was at UCSF I had ample time to reflect on the course of my illness. In 2009, within a matter of months, I went from having a full, active, employed life to one with restricted movement, uncertain future and escalating dependency on medical care. I went on a much anticipated vacation in September 2009; my itinerary included France, Israel and Jordan. Never in my wildest dreams would I have imagined that I would become so sick in Paris that I’d have to scrap the rest of the trip and return home. Certainly, I never anticipated that I would collapse after getting off the plane in Chicago and not even make it as far as U.S. customs. I was hospitalized in Chicago for about a week before I was well enough to fly home and be admitted to a hospital in San Francisco for further treatment.
Fast forward 20 months later, I was at UCSF with my long time friend Mark waiting to be taken to the operating room. I thought about how grateful I am that I have never been alone during my ordeals. In Paris, my buddies David and John kept a careful eye on my deteriorating condition. In Chicago, Hillary popped in to the hospital to visit, did my laundry and brought essentials like a cell-phone charger and other edible goodies. While in San Francisco I have been surrounded by the love and support of my friends, family and former coworkers. I have the best medical treatment options available and highly skilled teams of healthcare providers. My belief system confirms that the whole universe is conspiring to make real whatever is best for me. I am grateful that my future is so uncertain. My plans for myself, even my wildest dreams, have proven to be much less interesting than anything that actually happens.
July 13, 2011 - Hal Hansen
On Monday, June 27th, 2011, I received a call from the nurse/coordinator at UCSF Medical Center Lung Transplantation clinic. Having been on the transplant waiting list for only 3 1/2 months, I was a bit surprised when she asked me to report to UCSF as possible donor organs were available. My oldest friend in San Francisco, Mark Miller, met me there. I was admitted and prepared for surgery. Unfortunately, as the day progressed, it became clear that there were some issues with the donor lungs and we decided to not go forward with the procedure. We anticipate with confidence that in due time another better opportunity will present itself.
During the eight hours I was at UCSF I had ample time to reflect on the course of my illness. In 2009, within a matter of months, I went from having a full, active, employed life to one with restricted movement, uncertain future and escalating dependency on medical care. I went on a much anticipated vacation in September 2009; my itinerary included France, Israel and Jordan. Never in my wildest dreams would I have imagined that I would become so sick in Paris that I’d have to scrap the rest of the trip and return home. Certainly, I never anticipated that I would collapse after getting off the plane in Chicago and not even make it as far as U.S. customs. I was hospitalized in Chicago for about a week before I was well enough to fly home and be admitted to a hospital in San Francisco for further treatment.
Fast forward 20 months later, I was at UCSF with my long time friend Mark waiting to be taken to the operating room. I thought about how grateful I am that I have never been alone during my ordeals. In Paris, my buddies David and John kept a careful eye on my deteriorating condition. In Chicago, Hillary popped in to the hospital to visit, did my laundry and brought essentials like a cell-phone charger and other edible goodies. While in San Francisco I have been surrounded by the love and support of my friends, family and former coworkers. I have the best medical treatment options available and highly skilled teams of healthcare providers. My belief system confirms that the whole universe is conspiring to make real whatever is best for me. I am grateful that my future is so uncertain. My plans for myself, even my wildest dreams, have proven to be much less interesting than anything that actually happens.
"How may I Help?"
July 13, 2011 - Hal Hansen
People have been supportive in offering encouragement and their prayers. Numerous parties have paid visits to me while I have been hospitalized 6 times in the last 2 years. Food has been brought to me at home, errands run, ovens scrubbed (thanks Mike). Accepting this help has been a humbling experience for me. And a good one.
I have full confidence in my healthcare providers. However I have less confidence my ability to meet my financial obligations and challenges ahead. While I currently have pretty good health insurance, that will end soon and I will be on public healthcare (Medicare). Now if I was living in Denmark or Sweden or just about any other civilized society on this planet, I'd be less concerned. But I'm in the US, where......well let's just leave it at that. No politics.
A fund has been set up on my behalf in order to help with mounting medical costs and unforeseen expenses. Should you wish to know more about this fund, see the information in the column at the right.
"A New Pair of Lungs" Party - Postponed!
June 28, 2011 - Mark Miller
On June 27 Hal got THE CALL from UCSF. He was to get his ass to the hospital ASAP (within a couple hours)! Could this be it? God, I was nervous.
I decided to take off work and go out to the hospital to wait with him. To make a long story short, (and I think most people have heard by now): Hal and the lead surgeon made the decision not to transplant at about 8pm that night. Something about blood gas levels falling quicker than they like to see... and the lungs were somewhat smaller than ideal. (No one wants small organs!)
After waiting all day, it was definitely disappointing... but all things considered, it was excellent news. We now know Hal's near the very top of the the list, so this will probably be happening in the near future --at a time when he's stablized at a pretty good level. That's critical. It means a much better chance of a good, uncomplicated recovery. (I had been afraid that he was going to have to get considerably worse again, before he'd be competitive on that list --a scary thought.) Also, we now better understand the logistics of the process (although I certainly hope we don't go through another 'false alarm').
Thanks to everybody... and I'm sorry especially to Stu and Jeff, who went out of their way to try to come up to the hospital and be supportive, only to be snared in the logistics mess that was happening all day! I'll be discussing with Hal over the next few days how we can do better with logistics the next time. (It may be, for example, that no one really needs to be at the hospital until the decision is made to actually wheel him to the operating floor. Hal wasn't really very freaked out over all the proceedings today, and will probably be even less so the next time around.) I decided to take the day off and go up to the hospital once the news really sank in, because I was frankly freaked out. Thoughts of "OMG, I may never see Hal again!" started to creep in... and then I thought about the enormity of it all... how scared he might be, etc. But in truth, it wasn't that bad.
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You Never Forget Generosity that Counts
June 27, 2011 - Mark Miller
Back in 1996 my brother-in-law died at age 44. I was back in Indiana for a week of horrible sadness. There were two families of very emotional sisters, and two young sons (my nephews) left behind. My sister faced a looming financial crisis, in addition to the emotional trauma.
We decided to avail ourselves of a program of the Lutheran Church, set up for extreme situations like this. It was a 1-for-1 matching-funds program: the church would match every dollar we could raise in a two-week period to help relieve the financial pressure on my sister's family (her home was threatened among other things). I donated $1000... and called my old friend Hal. Even though he'd never even met Gloria, he immediately wired the same amount.
That's the kind of generosity you never forget... the kind that counts.
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Sheesh... doesn't this look like fun! At CPMC last year (with pneumonia).
