The cost of love

On a certain website I visit regularly for the discussion forums, one submitter asked today, "Who do you love as more than a friend?"

This, at first, seemed like a difficult question to answer, but then I realized I've been meditating on the very answer to that question for some time now.

Obviously, any one of us could say "my mother" or "my spouse" or similar.  Duty tells us to name our family and our caregivers.  But by the context of the forum, I assume the submitter really meant "of your friends, whom do you love as more than just friends?"

If that's the question, I'll confess that my current medical crisis has cast into hard relief the various strata of friendships I do have and that as I have recently realized, there is a level of friends that is far nearer and dearer to my heart than even my siblings.  There are a few fellow CF patients in my life whose health is as precarious as mine - or only somewhat better or somewhat worse.  And it's those individuals for whom I would not only go to the mat - as one does with all good friends - but would positively give up my position on the lung transplant list, or pass on an offer, if it could mean they'd get new lungs first. For the first time in my life, I care so much for a certain few individuals (outside of romantic love) that I would literally die for them.

In realizing that, I have discovered a new dimension in what it means to be an adult and a man.  A man's desire to live is strong, but his desire for his friends to survive is even stronger.  This has nothing to do with the noble concepts of chivalry still ingrained in a youth well brought up, but rather has organically grown from my core: a true desire to see my friends - these friends in particular - survive, grow strong, and live their lives with passion, even if the cost of that should be my own second chance.

By sweat and pain, we each of us has surely earned the ticket for passage to a better, happier life than what we now endure.  But if there is not enough room on the ferry for all of us, then I will do my best to put my friends on the boat, while I stay on this shore and hope another ferry comes before it's too late.

Earlier tonight, I spent a few precious hours with one of those friends and her family and for a brief time we could forget our illnesses and just be happy over a board game and some pie.  Tonight, I was reminded of the sweet taste of the simple things in life and that this fight is worth it not for the inherent value of our lives alone, but because we have each other.

Hanukkah miracles

Pulmonary Rehab, Day 37.

Tonight begins the festival of lights, celebrating an 8 day miracle so long ago at the restoration of the Temple.  It may not be the biggest miracle Yahweh has ever wrought, but we'll take what we can get and be grateful for it.

As I walk the track at rehab and observe the other patients, I see so many miracles in the flesh.  Like spirits being called back into life, patients who have returned from the hospital with new lungs arrive and thrive. Complicated cases that hospitals wouldn't touch 5 years ago are now having life breathed into them.  It is mind-boggling!

Much as Hanukkah is a week of thanksgiving, so tomorrow Americans observe a day of Thanksgiving, before going back to being the spoiled consumerist brats we are.  The last time these two holidays coincided was 125 years ago and the next time will be in 70,000 years (so my sources say).  I find it interesting that the roots of both holidays are (like Christmas) slowly being lost to a non-humanist, plastic, and commercial treatment that encourages us to stop thinking and to stop caring.  We're subtly being told that by emphasizing compassion only for right now, we can ignore it the rest of the year.

But come to Duke, and there you'll find compassion year-round.  Even though doctors and nurses and rehab therapists be cray-cray and push you hard and make you cry, they do it all with the goal of restoring your life.  They've created a very hard road here, with many hoops to jump through, and a lot of it is painful and feels arbitrary; sometimes they have to force your cooperation.  But I've never experienced (yet) a more *patient* population of medical professionals.  They can't understand 100% of course, because they haven't been through this themselves, but what compassion they can extend, they willingly and unfailingly do.*  From compassion comes love; from love, miracles.

Today is my 20th day on the transplant list and 15th day since my dry run.  I so want new lungs, as I am no longer making headway at rehab and am only able to maintain.  Moreso, I want Piper to get a few pounds on, get listed, and transplanted before we light a full menorah.  And I want Denise to get listed and transplanted just as rapidly.  Tonight, I am reminded of the hope this season and these holidays represent as I fervently hope for three miracles in the next eight days.

*Social Work excepted. Because they're bitches.  Amen.

Having Faith

Pulmonary Rehab Day 33: Should've started with a better breakfast.

Went to rehab at 11:00 only to find out the change in scheduling that had been benefiting me was redacted, leaving me with scheduling problems again. Then I had to abort floor class (yoga today) so I could jet over to the hospital at noon for what I thought would be a short endocrinologist consult. We didn't leave the hospital until 3:00! And walking to and from the clinics with my portable tank, it has become clear that I now need more oxygen than the pulse regulator can provide; I'm going to need to move to the constant flow regulator and carry extra tanks. It's the CO2 buildup that's the real culprit, not just oxygen sats.

I had just enough time to get back to rehab, rush through weights and a 20 minute walk, and sneak into seminar a few minutes late. Then sneak out again to hook up an IV and sneak back in again. My first good meal of the day came at 6:15!! And now I end the day with some harsh criticism coming out about the windows at Macy's on State, handiwork I'm largely responsible for (though I can't say I'm surprised). I'd like to say I can finish therapy now and the day will be over, but I have another IV in an hour and another after that at 11:30. There have many blows to my psyche today; and what I wouldn't give for about 12 straight uninterrupted hours of sleep right about now.

And yet ... still my thoughts are with my other NY-Durham "family", my "cysters" Denise and Piper. I'm relieved Denise is discharged and gets to sleep in her own bed tonight. Her CF has been presenting her with complication after complication. If I think I am fed up with these old lungs, I can only imagine how over it she is! She bears up through it all with the fortitude of a Spartan; even I don't have that kind of strength.

Piper's call from NY turned out to be an exhausting dry run for her, disappointing to her and her family, disappointing to her friends. While I have the utmost confidence she'll get her double lung transplant here at Duke, I understand it is so easy to get discouraged when you're sucking wind w/ every breath and there's just no way out but forward. I understand because I'm living that same inability to breathe.

The light at the end of the tunnel sometimes looks very dim. But the light is yet on and progress is being made. And nobody I know from my scant eight weeks here in Durham has yet died while waiting for lungs. In fact, one of my first pre-transplant rehab friends, Rodney, showed up today for his first workout as a post-transplant. It was, I kid you not, like seeing a pillar of fire appear in the desert. The sight of this man walking tall and proud and without oxygen was so beautiful I wanted to weep. This! Is! Happening! I am not a religious man, but I am learning the meaning of faith.

My Life Is Not My Own

Pulmonary Rehab Day 31.

My life is not my own. My days have become full of some medically-centered person's life that I barely recognize as being my existence. I can't image trying to fit anything resembling paying work into this. Instead of a thematic post, here's simply how today's schedule worked out.

7:00 wake up, drag self into bathroom, stare into mirror and mentally sing Adam Sandler's "What The Hell Happened To Me?"
7:15 protect accessed port with Aquaguard and duct tape. Note that the access and dressing job that took place last night is horrible. Nurse M is a complete hack. It is not comfortable and looks bad. Suspect this isn't going to last.
7:25 shower finished; dressing mercifully dry underneath the protection. Finish up in bathroom.
7:30 Pound down nutritional supplement and breakfast.
7:45 An hour of Vest and nebulizer therapy w/ concurrent pipercillin infusion.
8:45 start vancomycin infusion; leave for hospital
8:50 get a text from Piper that she's got a call from Columbia!
9:00 order two coffees and a toasted cinnamon-raisen bagel w/ veggie cream cheese
9:15 visit w/ Denise on 7800. Discover I was handed donut holes instead of bagel. Shit. Drink coffee, chat, pass the time. Highlight of my day. We get another text from Piper that its a go and she's headed for the air ambulance to go to NY.
10:45 leave for rehab
11:30 floor class w/ Carl, who should probably be drilling Marines at bootcamp. Port hurts now. Strained somehow through this simple exertion.
12:15 weights and lunges and ball squats oh my. Lots of resting. Can't get my breathing under control even though oxygen sats are fine. It's the CO2 building up, you see. No problem; I've got all day. Port hurts more. Probably should've gone light on the weights? (it was an arms day)
1:00 Force myself to get on the torture-cycle. 20 decent minutes, though not as good a performance as yesterday. Ten minutes resting.
1:30 start my 20-minute walk. Rehab is a relative ghost town. Having forgotten my headphone, my thoughts are all tumbled in themselves. Miss my friends. Wish Denise were feeling better; and hoping against hope that Piper's day turns into an amazing night and she wakes up tomorrow with a new lung.
2:10 leave rehab
2:25: hole up for a few minutes in the Hardee's parking lot with my nutritional supplement and some hot ham-n-cheeses. Trying to clear my head and calm my tits. Gotta keep my shit together. Realize how bizarre this all is, but that for just this moment, with NPR on the radio and food in hand, I feel normal again. I hear this great line in a story about a drug rehab center:
"The only thing you have to change is everything." I'd say that fairly applies to my situation as well.
2:50 home
3:00 naptime. Port really hurts. What the hell?
4:00 Call UNC, talk to Dr Randell, get wheels turning to eventually send my old CF lungs to UNC for research purposes.
4:30 get a call from prescription lady at Duke
5:00 Notice the way my port is dressed has pressed the needle down and to one side, actually tipping my port and the end where it attaches to the central line is now trying to poke through my skin. Angrily remove dressing and needle from my port and put a band-aid.
5:05 leave to swing by Duke and pick up a badly needed prescription
6:00 get rescreener call from Schlesinger associates setting up a one-hour interview in December
6:30 dinner. don't want to cook tonight, no appetite at all; too much anxiety. So I eat another breakfast.
7:00 Jeopardy
7:30 an hour of Vest and nebulizer therapy; take Vanco out of fridge
8:30 shower and shave, since I'm deaccessed for the moment
8:45 use last needle and dressing kit to access myself because I can't trust the fucking nurses
9:00 Vancomycin infusion
10:00 Naked Vegas
11:30 Pipercillin infusion
12:05 sleep. I hope. And dream of an easier tomorrow.

The beginning of the end

Pulmonary Rehab Day 29, end of Week 7.

In my writings and when talking to doctors, I've often used a slope metaphor for what's going on with me.  I've been likening my decline to sliding off a gravelly slope; concerned that a steep and abrupt cliff awaits me that that will spell my end.  Worried that the system can't respond fast enough to a sudden, steep decline in lung function to save my life.  Well, Cris meet cliff.  Cliff, Cris.

Let's back up to last week, when I had a hard time Thursday and Friday and throughout the weekend with tightness, hyperinflation, and breathlessness.  Chest congestion increasing.  Hyper-reactive lungs closing up when I inhale the medicines that are supposed to be helping.  But Monday and Tuesday were an improvement and I did well at rehab.  But back again to having a hard time mid-week and today.

The newest wrinkle now, it seems, is hypercapnia, or CO2 buildup.  This is difficult to measure and difficult to manage.  In clinic, they'll pull an ABG - arterial blood gas - and one of the results is a measure of how much CO2 one retains.  Only recently did that number go above normal for me.  Yesterday, though, there was a quite a jump.  (To 50...you can look up normative values here.)  My doctor didn't like that and rattled the bipap saber a bit, though I think we'll hold off a couple weeks in hopes I get a transplant first!  (I'm still sleeping well, after all, and oxygen sats are good all night.)

But you can't measure CO2 levels as you exercise, not very well; not with simple, practical means.  And so I'm left to feeling it out.  CO2 buildup causes a variety of effects, some of which I experience and some of which I don't.  I don't really get CO2 headaches, for instance.  But if you've ever held your breath to the point of blacking out, you may be familiar with how the world starts to go dark at the edges and vision doesn't stay synced with head movement.  There's also a feeling of breathlessness, of course, as CO2 levels are what drive our breathing mechanism.  I get mild tingling in my extremities as well as tremors.  All the while, my O2 can be just fine.  But any real exertion - my normal workout pace on the bike or walk for instance, or putting in a good set on the weight machine - kicks my CO2 levels up and I'm forced to slow down, even stop.  And rest.  And recovery has been taking longer and longer.

So my lungs have progressed to that point: where not only don't I have much volume, but also don't have effective gas-exchange properties.  This is a hard limit - there is no training to get past this.  I must continue rehab to the best of my ability and I must patiently await transplant.  But if I needed any clearer sign that these lungs are done, it's just been delivered.

Now, my current troubles aren't *all* about a sudden jump in CO2 retention.  I do have a lung infection brewing.  My doctor wanted to wait a week and see how I feel before ordering IV antibiotics, but I pointed to my PFTs (21% FEV1, 60% FVC) and noted that my CF pulmonologist in NY would not wait.  So we ordered up some IVs and I've had my first dose this evening already.  I am hopeful that the IVs will result in some better happenings at rehab and bridge me over 'til transplant.

A person can go a long time on lungs that are damaged, as long as they're still clearing out CO2 and bringing in O2, enough for the rest of the body.  But...now mine can't.  I'm having to retard even my supervised, prescribed exercise.  It is a hard thing to finally look this in the face.  I recall a moment back in August when I was watching my doctor type notes into the computer during our consult and he just routinely tapped out "end stage cystic fibrosis" and "respiratory failure".  I was shocked.  I hadn't applied those labels to myself yet.  But this CO2 thing makes those labels relevant and vivid.  It's like seeing but not seeing those signs at the Grand Canyon:  Danger. Steep Drop.  Stay Back From Edge. You don't think they apply to you, until you are scrambling at cliff's edge to keep from going over.

Tonight I'm reminded of that edge; because I'm clinging to it by my fingertips.

The First Offer, The First Dry Run

Pulmonary Rehab Day (and night) #26

"We're gonna need a montage...a sports training montage..."

If you know what that's from, then you know why it's been going through my head lately. The days in rehab are beginning to blur together, especially as many of them are two-parters with lunch and nap in the break. I am getting stronger, noticeably, beyond what I thought could be achieved in such a short period of time. But there's still a long way to go to a picture of health.

Yesterday, a small group of us were chatting together after our workouts and we noted that of the "class" we came in with at the top of October, only three of us seem to be left, Rodney and Sean's absences combined with rumour signalling that they got their transplants and are now in the hospital. (We should see them resurface shortly sans oxygen tubes!) Mary Francis, James, and I looked around at 1:30 and realized that we didn't know any of the other people wearing oxygen - they've all come into the program after us. In such a short amount of time, we've become the old-timers -- at least as far as pre-transplant life is concerned.

But that won't last long. We each of us will soon be transplanted ourselves, as we are all on the list. I confess I didn't realize how short a list Duke really keeps until last night. I'd just finished the first half of dinner and was awaiting the rice to be ready, watching bad Tuesday-night, 'Murica! Fuck yeah! TV (Agents of SHIELD), when my phone rang.

"Hi, Cris. This is Sandy, one of the coordinators...we have an offer for you. How far are you from the hospital? If you can make it by 9, please check in at Duke Main Admissions." dot dot dot After a few more details, we hung up and I knocked on the door to Mom's bedroom, where she was also watching 'Murica! Fuck yeah! TV (Biggest Loser).

"Mom? Hey, I don't think we're gonna be able to watch our new favorite show tonight at 10." (Naked Vegas - you've got to check it out.)

"Why not??"

"Because we'll be at the hospital." Sly smile.

Mom went bonkers. Given her essential tremor, the adrenaline surge was like throwing a palsy grenade at her; I almost forced her to pull over and let me drive. Is this what husbands act like when a woman announces it's time?

As it turns out, it was a dry run. You hurry up and do a bunch of labwork and tests and then sit there for several hours while they make the final determination whether the lungs are actually good. In this case, they were not. That's OK - there's plenty of time and clearly I'm at the top of the list for my blood type and body size.

One take-away from last night, though, is that because I can't have anything by mouth from that phone call onward, I will, next time, slug down an Ensure just to make sure there's nutrition going in and I will also take the few minutes to shower and shave, because if it's a go, there's no telling when I'll next see a shower!

There will be another call soon, I'm sure. It is to my advantage to practice meditation, enhance my calm, and be the example I wish to set. I have no doubt this dry run was as it should be and the next call will be as it should be, too. They will not implant lungs that are not 100% ready to sustain a second life.

Last night I was reminded: Duke has my back.

The most common questions

Pulmonary rehab, Day 24.  Friday of Week 6.

I should have published yesterday, right on Day 23, because that is the magic number held up like a small golden idol by everyone on the transplant team.  In much the same way the alien dolls in Toy Story worship and run their lives by The Claw, the transplant team members constantly refer to the 23 days in rehab.  Not 21.  Not 22.  TWENTY. THREE.  Then you graduate and keep going to rehab until transplant. 

 

So I graduated at nine sessions, right?  Yes.  Well, I am a smart guy and can continue building strength and endurance on my own, which I have.  But in a twist of circumstance, what should finally happen on exactly the 23rd day of rehab?

I got listed!  Yes, after a couple weeks of the sweating it out over the small points, such as an unreactive HebB surface antigen and a high white blood cell count, subsequent testing has removed any obstacles and all lights went green.  As of 3 p.m. November 7th, I am on Duke University's lung transplant list. 

When telling people this, the most common question I've gotten over the last 48 hours is, "Are you excited?"  This is closely followed, or in some cases substituted, with, "What's life like being on the list?" and from less transplant-knowledgeable acquaintances, "So when is your transplant scheduled?"

OK.  The first question is totes legit.  I would probably be excited were this not my second listing and were I not already on Columbia's transplant list for almost 11 months already.  But much as one's fingers stop hurting after about the 75th hour of practicing guitar, one does not get excited over a minor change in an existing transplant status.  What is exciting - or to be more precise pleasing - is that now I am being listed at an institution with much shorter waiting times, equally good outcomes, and a much more pleasant commute.

I'm just not a man of wild mood swings or over-expression.  I didn't whoop and hollar the first time I got listed, why would I this time?  It is promising and heartening, but I'm not going to pop a blood vessel over what is, after all, merely admission to the entry line to Club Transplant; it is a whole 'nother step getting into the club itself!

Second question, what's life like on the list?  Well, same as it has been for almost a year: don't travel more than an hour from home.  Have your cell phone charged, on, and with you 24/7, don't make any  commitments to projects you can't afford to bail out of, and make sure your caregiver can also drop everything and come running when the call comes.  This is a HUGE impact on life-style, although coming from the arts, most of my projects are of relatively short turn-around times and I rarely shut my phone off anyway.  Mostly, being on the list involves being tethered to your caregiver - or rather s/he to you - and that must be terribly discomfiting to them.  I feel bad for Mom, sometimes, because my medical status forced her to move to Brooklyn for a year.  And now Durham.  (She likes Durham, but...could we have skipped the year of NYC perhaps?)  The weekend trips out-of-state she likes to take to see family in New Orleans or Cincinatti - not happening now.  Not until a month or so after transplant.  She is as much restricted as I.  THAT is the bigger impact of being on the list, I think. Being listed doesn't just affect my life, it affects my caregivers' and family's lives as well.

Lastly, when is the surgery?  Well, when my donor is done with his or her lungs, I suppose.  But nobody knows when that is.  I have a hard time refraining from just asking "are you stupid?" when I field this question but then I remind myself it isn't stupidity talking, it's ignorance.  Except for transplants, all other surgeries ARE scheduled.  And even some transplants are, if it's a living donor!  So it's not a dumb question, but rather one of poor education.  The hard fact is that people are constantly dying in a variety of ways, and few people do so on a published schedule.  Sometimes, a person young enough will die in a way that leaves their body on life support, but with no brain function.  At that point, if the donor and the donor's family have said yes, viable organs can be retrieved and passed on to people who desperately need them.  The lungs I will eventually get are, right now, still out there somewhere, breathing, laughing, crying, walking, and talking along with the whole person who was born with them.  An accident will happen and a dozen other factors will fall into the right place and the right time for me to receive those amazing, precious lungs. 

In the meantime, I continue to walk around that track at rehab.  Waiting. Walking. Waiting.