At the O.R. Door: Part Un

When I started writing about my latest adventure, my intent was for it to be a single post, but I obviously have too much to say on the subject, so here is Part Un

(named just so i can say "deux" next time)

 

An important disclaimer.... while I am told I looked very calm, I still was under a great amount of stress, and at some point in time last Friday night I did get some Valium, so this is what happened to the best of my recollection. 
 

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Can anyone say they have experienced waiting for major surgery with a comedy troupe of old high school friends as an entourage?  Well I have, and it was a profound experience.  I have reflected quite a bit on the events that occurred last Friday (12 April), and despite some of the dreary topics, wide range of emotions and disappointments, in the end, it really is all POSITIVE.....

A Once Unlikely Visit

While there is much debate on FaceBook's negative impact on society, such as over-sharing, identity theft, cyber stalkers, those annoying adds, wasting time obsessed with it, and way over-sharing, that fact is that while using a little restraint and common sense, FB can certainly have extreme positives in your life.  Through my diagnosis and journey, many people from differing aspects of my life and at varying degrees of friendship (from the hey-I-think-I-remember-you-from-grade-school ones to my long-lost-besties and the hey-I-don't-know-you-but-you-have-the-same-rare-disease-as-me) have really rallied around me.  It is inspiring, it is comforting, and it in itself lends to a reassurance in humanity.

It is safe to say that Sandi and I have kept in contact off and on throughout our lives ... she certainly has provided me several pro-bono therapy sessions over the years.  I know I could call her day or night, and I could say anything to her, and she will always be there for me.  But I only had just recently (the last 4 years or so) been able to reconnect with Emily, Kelly, and Mandy through FB.  I'm sure this story is the same for many people, but my experience has really made me look forward to catching up with more of my old classmates, especially since I was so shy and quiet in my youth.

Friday at around 12:30, four of my old high school friends arrived for a visit that once would have been very unlikely, but now I think will be commonplace.  I had seen Sandi within the last few years, but I had not seen Emily or Mandy for over 10, and Kelly in almost 20 years!  I swear it was if we had never left each other.  My husband went downstairs to let them in the garage, I heard our door open, but I don't have line of sight from the living room to the front door, but I could hear them as they came in.  As one by one they came around the corner, I couldn't believe my eyes.  I couldn't believe we were all actually here together again....and just like that, we picked up where we had left off.  There wasn't even an awkward silence.  As you can imagine the apartment was a buzz with chatter and laughter, and amongst the harmony of memories that filled the air, I thought to myself have we really not changed that much in all these years?  I swear I was in the middle of this  contemplation when my phone rang.....


The Call: 12 April 2013 @ 1:55 PM
The caller ID said UPMC General, so I guess I thought it was going to be some appointment reminder.  I picked up the phone, and the conversations continued around me.  Paul, one of the transplant coordinators (but not mine) called and asked if I was feeling okay today.  At first this irritated me a bit...is he calling to chit chat, is he calling to fuss at me for opting out of rehab yesterday, did we not update my TX coordinator this week, why is he asking me how I feel?  The last question particularly irritates me in general sometimes, because I don't know how to answer it, and especially if I am lying in a hospital bed, because why would I be there if I was feeling good, right?  My default answer to these questions used to be "OK", but that isn't true, and it's a relative term when you have a chronic, degenerative illness.    In fact my definition of OK has changed quite a bit over the years; it really has become a sliding scale and has continued to slide to the right you could say.  The sicker I get, the broader my definition of OK becomes as I begin to accept regularly occurring things into my everyday bucket that I used to consider, well, extremely abnormal.  The truth is I feel like crap, everyday, all day.  So as I finished this rant in my head, I said "I'm feeling about the same as I usually do".  Truth. 

Paul then told me that Dr. Bermudez asked him to call, and there was a potential set of lungs for me.  Needless to say I was not expecting this at all, and was probably in the most shock I had been in receiving a transplant call thus far.  I guess I shouldn't have been shocked, really I can get a call anytime, but I had just gotten one on Sunday, so I wasn't expecting another one so soon.  I think I raised my hand to signal to the living room that this was important; immediately you could here a pin drop in the room so maybe we have grown up some :) .  Paul asked me if I could come into the hospital.  I gave him the affirmative, and he asked me if I could be there by 2:30.  I looked at my watch with surprise, since it was 5 minutes till 2pm.  Again I told him we could, we just needed to grab our bag, and we lived about 10 min from the hospital.  He then asked me if we could get there sooner (literally a bunch of question marks popped into my head).  I asked him where I should go, and he gave me the details, however he had no other information on the lungs, except that I was the backup patient. 

I don't know how long I just sat there after I hung up, honestly I think I was in a little bit of shock.  When I came to, Steve was gone, out of his chair and had gotten mostly down the list of things to do or to grab before we headed to the hospital.  My friends were asking what they could do to help.  I immediately knew I wanted them to come.  I thought, how crazy is this, it certainly felt meant-to-be.

We quickly made it over the bridge to the hospital; Steve and I made a few phone calls a long the way.  We only had to wait a few minutes in admissions before they had my I will pay paperwork for me to sign and a room ready on the transplant recovery floor.  So here we came 9D, my entourage included, and the whirlwind began.

The Prep:  3:00 PM
I'm sure the staff on 9D was a little surprised to see one very tall hairy Sasquatch man pushing me in a wheelchair come out of the elevator door, followed by 4 giggling ladies.  We checked in with the front nurse, and of course, they were expecting me.  My room was on the very end; it was the room they would prep me in and I would wait in until I got called for surgery. 

Immediately there was a continuous stream of people coming in and out of the room, all in a hurry to get my prep done.  They were doing the typical kind of hospital admittance things, setting up my O2, my bed, and getting medical supplies.  I changed into a gown, Nurse #1 took my temperature, Tech#1 took my blood pressure, someone else did my pulse-Ox.  Everyone on 9D was super, almost overly, nice, introducing themselves to me, telling me I was going to be fine, I was a good candidate, and that I would be spending a lot of time with them (since they are the recovery team).  I'll be honest, it seemed a bit much to me.  Not that you don't want a nice nursing team (in fact that is what everyone should hope for), but it made me feel a little like "oh she's extra sick, and this is an extra scary risky thing, so we make up for it by being super super nice"...which made me a little uneasy....it makes you think, jeez I'm in bad shape aren't I?  (which I am, so I should just accept it !)  Staff that weren't even working my case that night came down to introduce themselves to me; it's pretty amazing and comforting thinking back on it. 

There were a few quizzical faces about the number of people I had with me, but every time we explained the situation, everyone agreed it seemed meant-to-be that my friends were all there.  And the medical staff was very accommodating.  They had to get some blood from me (which is usually quite an event, seeing how my body doesn't like to give it up).  Nurse #2 and Intern#1 looked me over real good and agreed I looked like a challenge.  Nurse#2 thought he could get some blood, but went ahead and called the roaming expert IV team to put an IV in me.
It was kind of a blur, and sometime during all of this Mandy handed me a gift box that the girls had put together for me.  I opened it (with some help from her because I swear it was in a Chinese puzzle container, and apparently my brain wasn't working) and it was a beautiful necklace with a teal crystal (the color associated with raising awareness for Scleroderma).  They had planned on giving it to me later, but seeing how I was getting prepped for a potential surgery they wanted me to have it right away.  I am sure it didn't seem as if I paid much attention to it, but when I saw what it said, it definitely struck me.  It is something that I certainly chewed on the rest of that night, and the next day actually. Am I fearless?   I am not without fear, that is for darn sure.

 

Nurse #2, an older gentlemen who liked to joke around a lot (I wish I could remember his name but there were so many people hovering over me), came back in to get my blood; he had me lay down in the bed to do it.  He tried one arm then was switching to the other when I saw Dr. Bermudez and another person at the door.  Although I had never met him in person, I recognized Dr. B immediately from the clinic, and the information I had read.   He looked around a little bit in astonishment I think, and said he would come back later when they were done taking my blood.  I said yes there are really this many people in my room, we are having a party, and encouraged him to come on in.  Now there were 10 people in my room and few more outside the door :)

 
Dr. Bermudez told me a little bit about what was going on, and he said after reviewing all the information he felt sure that I was the better match for the lungs and he was probably going to move me up to be the primary candidate.  We learned that the lungs were from a 20 year old girl, approximately 5'2", and she was not local, meaning the team would need to fly out and get the lungs for me.  He then started to tell me about a clinical study they were doing, and I have to admit, I got a little disappointed.   I fervently hoped that this was not his only reason for coming to see me. 
 
Nurse #2, on the other side of me, was having difficulty finding a vein, so again Dr. Bermudez commented that maybe he should wait until they were done getting my blood.  I indicated that I wanted him to stay.  I'm pretty sure that's when Steve asked the Chief of Cardiothoracic Transplantation if he was squeamish at the sight of blood.  Oh goodness, I thought, did Steve really just insult the doctor?  I think that was Steve's way of testing him, just like I had planned to as well if he decided to run out the door after the discussing their study....it's a little unnerving not knowing the doctor who is about to have his life in your hands.  Thankfully, Dr. B thought it was funny :) 

There are 4 surgeons I am told that perform the cardiothoracic transplants (heart and lungs). You've heard me speak of Shiggy, who I've met with several times, but since any one of the surgeons can be on call for my surgery you don't know until it happens who is going to be with you...and I really want to know who will be cutting me open. I don't just want it to be a curt handshake and then I'm put to sleep, I want to look him in the eyes and make sure he actually sees me, then thank him with all my heart.

As Nurse#2 kept working on my left arm, Dr. Bermudez started talking.   As soon as he started telling me about the clinical study I knew what he was talking about because in March, Terri on the UPMC Lung Transplant FB page posted a link to a news article and a video entitled Inside Life Changing Medicine: UPMC Performs "Breathing" Lung Transplant.  I said, "oh you're talking about the Living Lung Machine".   I think he was a little surprised I knew about it and he found it amusing that I had re-named it (you have to admit that sounds better than the Organ Care System).  

http://insideupmc.blogspot.com/2013/03/upmc-performs-breathing-lung-transplant.html 

courtesy of http://www.upmc.com

 

Instead of taking the lungs and putting them on ice, they use this new machine to keep them "breathing" with specialized fluids at a normal temperature.  The OCS is approved in Europe and Canada, but not yet in the U.S., therefore UPMC is participating in a trial (along with several other U.S. hospitals) to basically prove the machine works so it can be accepted here.  As Dr. B and I talked, Nurse #2 was still struggling to get blood from me; he had been digging all this time.  I finally turned to him and was like dude, no one finds blood on that side.  I turned back to the conversation; Steve said Nurse #2 kinda threw up his hands in a sign that he had given up, but when he undid the tourniquet some blood started flowing....and he collected about 15 viles of blood from me.  That probably sounds like a lot to most of you, but my routine blood work every 2 to 3 months is actually much more than that :) 



Dr. Bermudez then asked if I would like to participate in this study using the new OCS technology.  UPMC has 10 patient slots, and if I agreed, I would be randomly assigned a study envelope.  For scientific purposes, the study includes both transplant patients who receive lungs using the OCS machine, and patients that get lungs via the current methodology.  This is in order to compare outcomes.  The contents of my assigned envelope would either designate me as an OCS patient or not.  After Dr. Bermudez and I talked, and being from the scientific community myself, I was more than willing to participate in this study and help advance the future of transplant medicine.  Let's be honest here, I will be lucky to get lungs by either method, and if I can do something to help, then please let me.
 
However, I did ask if there were any additional risks associated with the device.  And this is where it got real, for which I was very appreciative of.  Long story short, they did not think there were any additional risks with the machine, in fact all the studies done in other countries had only seen benefits from using it.  But there aren't any additional risks identified because....there is already a risk that my new lungs won't work at all or won't work right away, so then I will have to be put on life support, there is a risk my new lungs will function worse than the ones I already have, there is a risk of infection, etc.  And Dr. B put numbers to all of this...and remember these aren't in the 1 in 100,000 range, they are all very real whole numbers >5%.  At first I felt hesitant about having my friends hear all this, would it be too much for them, but this is reality....this is what I have been struggling with all along.  I had read about all of these statistics, but no one up until that point had been so refreshingly blunt with me. 

Then Dr. Bermudez cleared the room (except for Steve and I) in order to examine me and talk about my actual surgery, because he was the one who was going to be working on me that night regardless if I were to be a part of the OCS trial or not.  Phew, he passed the test!  He reiterated that he had talked to Dr. Crespo and had read up on my case.  Up until recently, the typical incision was a clam shell cut which went across your whole chest and included cutting the sternum.  UPMC has been using a less evasive practice for a few years which consists of two incisions, one underneath each breast between the ribs.  They then spread the ribs, deflate the old lung, remove it, put in the deflated new lung, and then re-inflate.  As you can imagine, the latter is the preferred method because it excludes cutting your sternum in half, which adds more discomfort and healing time to the patient.  You can look up bilateral anterolateral thoracotomy and the clam shell incision online, but I warn you, it is graphic (this and the heart/lung machine is what stopped me from looking things up online anymore...well it at least has slowed me down some).  After examining me, Dr. B said that he planned on using the less evasive approach, but as always, the full clam shell is the backup.  We also talked about the pressures between my heart and lungs being very high, so my surgery would have some added risks.  Shiggy had already told me I was going to have to be put on some kind of bypass machine because of this, but Dr. B said he was going to try the Extra-Corporeal Membrane Oxygenation (ECMO) machine first versus the full Heart and Lung machine (you can read up on them both on the web, but it's some not-so-much-fun reading).  Dr. B said that otherwise, I was young and appeared to be in good mental and physical health (ya know, other than my POS lungs and my overworked heart....and the major effing surgery I was about to have).
 

Before Dr. B left, Steve asked if we could get some Valium.  Dr. B asked if it was for him or me :).  Steve said he would take some too if it was being handed out.  Dr. B turned to me and I told him that at the time I was feeling fine, but I had been experiencing some anxiety about the surgery and would like some on stand-by if I needed it.  He said it would not be a problem.  Dr. B concluded his visit by telling me again he thought I was the better match for this set of lungs and that the lung procurement team was going to leave around 4:30 to go get the organs, and he anticipated that surgery would start around 09:30 pm.  I was so relieved; our meeting went well, and Steve and I both really liked him :)

After Dr. B left, his associate came back in.  She was a nurse (#3, also very nice!) and was in charge of  the paperwork, logistics, and statistics associated with the OCS study.  I signed all of the I will participate paperwork, and she said she would let us know the outcome later.

 

Then it was back to my prep team; Nurse #4 came in and did an EKG on me.  At some point I peed in a cup.  And then Nurse #5, the roaming IV specialist came in to do my IV.  I remembered her from a time before.  I had been in the cath lab waiting for an Bubble Echocardiogram (where they shoot saline bubbles into your veins while performing the Echo), but the nurses down there couldn't get a line on me, so they paged a specialist...and it was her.  She got me first stick, both times :)

The OCS Nurse came back in and was very excited.  When my envelope was drawn I got a golden ticket so to speak, saying I would be a member of the study that used the OCS. We were all very excited about that.  Then someone else came to get me to take me to Xray.  It was then, that my friends decided to go get some dinner. 

I think it was around 05:30pm at this point; 09:30 seemed a long way off, but actually it went by very quickly.  And although I did not end up getting my lungs that night, there is much more to the story.... stay tuned for Part Deux!  And sorry it took me so long to write this up :)