An important note (at least to me)....when I could not get the HTML code to work as the Internet said it would, I called over my Software Engineer husband to, well, make it work. That is his job, right? His job actually, in several different ways:) After a few minutes working with it, he found a way around the HTML code...kinda. It was after I sat down to compose another post that I noticed my blog had crashed. I don't blame him, well not really, but he blames the website. I have to admit I have found Blogger to be a bit testy, but seeing how this is my first blogging experience I really don't have much room to complain.
My husband is actually brilliant in many ways and is one of the most sought out coder's in his career niche (e.g. writing navigation software for combat systems). In his spare time he teaches himself new languages. You have to admit it would be a little intimidating coming home to find your husband in his reading chair, leisurely ingesting some new textbook he plans to finish over the next week or so. He hates anything Microsoft or Apple...he is a Linux man. He even has Tux tattooed on his knee. But I have also learned, or probably more accurately, I improperly assumed that:
- he would know how to use Excel and help me input some data for an analysis I was doing, but apparently since that is a MS product he has no use for it, and I was told software engineers make there own spreadsheets if needed
- he could fix my IPhone, but that ended up with me losing all of my contacts (which I had been collecting for the last 7 years), and it was obviously due to some Steve Jobs / IPhone conspiracy
- he could add an HTML widget to my blog, but we all know what happened there...
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So most everyone has probably heard about my latest Almost Dry Run on Sunday night; here are the details...
I was anticipating a warm weather, sunny weekend, as all the forecasters predicted. But as many of you saw on my FB rant, the weatherman seem to always be 10 degrees off around here. Saturday, the elusive Pittsburgh sun was out like a sweet blaze of glory, but the temperature was in the 30's. Not only that, but I felt like crap. Ugh, I was having those weird stomach muscle pains again, my feet were swollen, I kinda hurt all over, I was exhaustively tired for no obvious reason....and, well, just plain irritable, which turned into quite angry by mid-day as I brooded over my broken down body and the sunshine I could see out the window which still remained out of my reach.
Sunday was a much better day; while it was mostly overcast it did reach 60 during the day, and while we were visiting Steve's grandmother, Baba (Russian for grandmother), the sun came out for a few minutes. Steve grabbed a chair and put it in the front yard for me, and even though it only lasted 15 to 20 minutes before the rain started, I enjoyed feeling the warmth on my face :) Steve and I made Shepard's Pie for Baba, Aunt Sandy, Uncle Bob, Cousin Jennifer and her kids. It was a smashing hit, and we also brought some Peace, Love, and Little Doughnuts.
Afterwards Steve and I checked out a few parks near where we live. The thought being to scope out a few places where we could go to get some fresh air on the next nice day. After our tour we have decided they use a very loose interpretation of the word park here. The first two consisted of nothing more than a cliff side area with trees next to a road. I wasn't expecting Central Park, but I did assume it would consist of at least a grassy wide open area with a walking path and a few benches. The last one we looked at runs along the Monongahela River and down near our apartment. The first part was a little scary, it brought visions of TV homicide crime scenes where bodies were found on the banks of city rivers...but it did get much much better. It runs along the whole SouthSide area, and past the Steeler's practice fields. Steve ran about 2.5 miles on it yesterday. So I am super excited about exploring it post-X, and it looks like a great place to read outside pre-X.
After a successful day out, Steve and I decided to watch the latest Batman movie on demand and around 8pm my phone rang. I picked it up and saw "Blocked", and I think a curse word came out of my mouth. It was Coline, from the transplant center. She explained to me that she was calling on Dr. Shigemura's request (one of the transplant surgeons). There were a pair of lungs, and if I would agree to having the Lobar transplant, I would be called in as the backup patient.
I guess I should back up here and explain what the Lobar procedure is. Even though I am considered a taller than average woman at around 5'8", my lungs are very small. I have always had a small torso; I am all legs. Unbelievably, my husband is 6'3" and we have the same leg length. Contrary to me, he is all torso.
So, my lung cavity is already small, and on top of that when you have a disease that causes fibrosis your lung cavity can actually shrink. So while normally someone the same height as me would have approximately the same size lungs, they are actually looking for a donor that is much shorter at 5' to 5'2". Statistically, most donors are young men (probably for the same reason that their car insurance is sky high until age 25), and the average height is.....well as you can imagine it's not 5'2". The transplant team theorized going into this that I would be a hard match because of my lung size (and some other things that I'll discuss later), so early on they started talking to me about considering the Lobar procedure.
Your left lung is made up of two lobes (I think it is a bit smaller to make room for your heart), and your right lung has three lobes. If the lungs as a whole are too big, the doctors could surgically segment the lobes, removing the two lower lobes from each side, and the middle lobe from the right, leaving me with the 2 main or upper lobes for transplant. When Dr. Shigemura's (we affectionately call him Shiggy around the house) and I talked about this in February, they had done about 25 of these kind of transplants, all with good success. There is some additional risk in the fact that the surgeons are dissecting the lungs and having to close off a major artery and a lower bronchial tube (at least that is my understanding). More cutting and sewing up equals more risk.
Diagram of the Lung and its Lobes (courtesy of clevelandclinic.org)
I have to admit I've been getting a little worried lately. I've only had one other potential match and the lungs were too big, and it seems as if transplants are happening all around me. I recently met two ladies that have been waiting over a year, and both of them are extremely short. I also met a post transplant patient who waited 1 year and 2months, and she is very short as well; I would estimate between 5' and 5'2". While I am apprehensive about the surgery, I know it is something I am going to have to do, and although UPMC has a big organ donor network to pull from and I really do feel like I am in the best hands, the reality is that there are people that die while waiting for a donor to become available. If I have to wait a year, I am willing, but Steve and I nervously question if I actually have another year to live....and I think the doctors feel the same way, which is why they wanted to list me early, and why they had been socializing the idea of a Lobar procedure with me.
They wanted to list me around Thanksgiving, but first we had to move up here. When we got here the first of February, unfortunately, my lung function decided to take a nice swan dive, I ended up in the hospital, and was much sicker at my initial listing than planned. Although the flip side to this is that my LAS is much higher, in the top 10% of patients, which means I am quite high up on the list.
The last time Dr. Shigemura and I spoke he said Plan A is definitely trying to get me a full set of lungs, but if it looks like I have been on the list too long or if I am getting sicker then we should consider the Lobar procedure to increase my chances for finding a match to meet the timeliness of my need.
So in that moment when Coline was explaining the situation to me, Steve and I had to make a decision. Were we ready to proceed with the Lobar? I put Coline on hold for a few minutes for us to discuss it. I've been listed for two months now, one other call and the lungs were too big, the average wait time is about two months....but with the new knowledge I had regarding the shorter patients (the patients that are the same height donor they are looking to match me with)....we thought we should take the chance. There are so many risks involved with this whole thing, really is the extra risk of the Lobar just in the noise at this point?
Apparently the primary patient did not want to proceed with the lungs if a Lobar procedure would be required. Dr. Shigemura thought they would probably be too big for the primary patient, therefore since I was willing to have the Lobar, my chances looked good.
We told Coline we were ready. Since we live so close to the hospital (like 10 minutes) she told us to stay home and sit tight, but for us to get ready to go, and for me not to eat or drink anything else.
Immediately there was nervousness, fear, anxiety, and relief all mixed in one. Steve and I embraced, took a couple of deep breathes....and then I decided to email Dr. Crespo, my transplant pulmonologist, to see what she thought. I needed a little bit of reassurance. Did we just make the right decision?
A few minutes passed, I think I was in shock. I looked over, Steve was doing dishes and had started the coffee maker. For a split second I thought, coffee?? Isn't this enough adrenaline right now...but I quickly moved on as I felt like I was starting to hyperventilate and a major Raynauds attack was coming on. Steve turned my air up to 8L so I could breathe comfortably, and helped me put on some socks on to battle the stress-induced Raynauds.
I then called my sister; she is still in Panama City. I gave her the scoop, and the other information I had learned earlier in the week in meeting the two patients on the list that had been waiting a year. Again, did we make the right decision? While I was on the phone with her, Dr. Crespo emailed me back....I am so lucky to have her as a doctor. She said "Lorene, you are getting sicker. You should consider this, yes. You are in the very best hands". It was emotional, Steve was kneeling beside me, holding my hand. Andrea started looking for flights out the next morning, and we pulled out the calling trees we had made. We all really thought this was going to happen.
I took a couple of deep breathes, looked at my list and called my brother. He had just gone on-shift at the police station and was in a staff meeting. He picked up the phone and I instantly felt bad for calling him. I never call him, we always text, so when he picked up the phone all he said was "Are you OK!?". I'm sure there was a long pause as I didn't know how to answer that just then because I wasn't sure myself....yyyyess, no, maybe, yes? I think what came out was, "I got a call", and then he stepped out of his meeting. I did my best to explain to him what was going on. I'm the backup, but it looks promising, no I'm not at the hospital, but only because I am just 10min away so practically there already in the surgical staff's mind.....and then there was a long pause on his end....."Lorene, that is AWESOME news!!!" It's exactly what I needed to hear. Not that Steve or Andrea don't give me this kind of support, but the three of us are so close to it. We live and breathe it everyday, the highs, the lows, the risks, the fears, my struggle to breathe, to function....they have seen so personally how very sick I am. So I don't think Steve, Andrea, or myself feel quite sure of anything anymore; we literally have stepped onto this roller coaster of constant ups, downs, twists, and turns...and we don't have any control over it. So my brother's vehement positivity snapped me right out of the emotional downward spiral I was about to descend into. And I am very thankful to him for that.
I was calling and texting people, Steve was calling his family...and we received much support and prayers. I finally decided to post it on FB. The apartment was certainly a buzz with energy. We both got my stuff together and went down our list of things to do before we left. I did grab my electric razor (thank you Dan and Lacey, best Xmas gift!) and gave my legs a quick going over (seriously a girl has to have smooth legs)....all the while jabbering to Steve. We were discussing the fact that my last meal for a month was the Shepard's Pie I had made (one of our favorites, and I never have the energy to cook anymore so it was a special treat), and I also had my very favorite banana doughnut; a perfect last meal. We had had such a wonderful day with the family, and I got to enjoy sitting in the sun for a little bit....what a good day to have and then end it with getting new lungs. Then the phone rang around 9:30; it was Coline again. Unfortunately my latest cross match came back negative, Shiggy decided these lungs weren't meant for me after all.
As you can imagine, there is a lot of science that goes into determining organ matching. The surgeons will get a baseline set of information (probably something like history, size and blood type), find the preliminary matches...and keep going from there. So when the first, second, third, who knows how many evolutions of information came in, I was a match. But they continually test the lungs for all kinds of things, from diseases and bacterias, to very specific tissue types and antibodies...and they do this all the way up until the lungs are going to be put into you. I've heard of cases where the patient was already under and in the O.R., but the doctor found a spot on the lung while examining them...maybe something that was missed by the harvesting surgeon from the originating hospital? The point is the medical staff have a responsibility, not only to the transplant patient, but to the donor to make sure they find the best possible matching recipient for these precious organs so they can fulfill their true purpose and are not gone to waste. And so I am thankful that Shiggy was looking out for me, and that UPMC is not afraid to turn away lungs that they don't feel are perfectly suitable for their patients.
I have been told that I have some rare types and levels of antibodies, which may also make it more difficult to find a match for me. This may be due to the Scleroderma, because it is an auto-immune disease and I have extremely high levels of certain antibodies which attack my own cells.
I wasn't relieved when I heard the news that is was No Go this time (which is good sign for me), however I wasn't too terribly disappointed either. I felt rather indifferent, and then proud because we did a good job handling it I think. If the call had been for a whole set of lungs, no foreseen complications, I knew we were ready for that. But this call had a hiccup in that we had to make a decision about the Lobar, and now we know where we stand so it will be easier to go forward.
We put everything away, called everybody to tell them it was a false alarm. As you can imagine we were pumped full of adrenaline, and poor Steve had already drank some coffee in anticipation of needing to stay up all night....lol, I don't think he will make that mistake again. We did decide that we may wait a little bit longer next time to activate our call tree...although as we know the surgery can be cancelled at any time.
We do feel more ready for the next time, which I sincerely hope is on the horizon for us very soon. And let's hope this is an easy one :)
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