PHOTOS I : transportation for transplantation. Feb 16, 2009

Emily received THE CALL at about 7:30 am to come to UWMC in Seattle for her double lung transplant. Not your regular monday morning wake up call. We had a good plan in place and had been packed for a couple of weeks. A call was placed to a flight  service, which is based in the Portland area, about a hundred miles from Eugene. They prepped a plane, called in the pilots and  beat us to the Eugene airport by a few minutes. The last thing Emily did before leaving our house was to e-mail the announcement that there were donor lungs available and we were on our way to Seattle. When we arrived at the airport the pilots greeted us at the door, this is Emily and our pilot. She was remarkably calm and in control from the moment of the call until being wheeled into surgery for transplant a few hours later. Smiling the whole time. 

Our  chariot awaits. From the time we unloaded the car until we were at plane side, only about ten minutes elapsed. The First Officer is taking the luggage to the plane. Just like when you fly on United or Delta :)
Peg and Emily walking toward the jet holding hands to comfort each other, just holding on.  We would all be holding on tightly to each other for the next two weeks, for comfort and strength. This is a big moment that has been slowly approaching for many years. A lot of waiting and anticipating and now the reality of transplantation is coming closer by the minute. 
Emily waiting to board, the line and wait were not that long. It was sweet to have the plane there so timely. Transportation was our responsibility and a vital piece of the puzzle. Our guidelines were to be in Seattle not more than three hours after the call, then the medical team would take over. Seattle is three hundred miles north of Eugene with the last miles some of the worst traffic in the north west.  Flying fast was our only option.
The girls settled in just after take off. This plane is equipped for serious medical transport and there could be a stretcher set up where the bags are. If that were the case there would be a flight nurse and respiratory therapist. Happily we did not need this,  just a really fast plane, on call 24/7.
Emily and Keith after take off, looking aft. I am sitting by the emergency exit. The safety talk was perfect. The First Officer came back, pointed at the door, said if needed, I should pull the door, throw it out, then you and your family get out. Fasten your seat belts, here we go! 

Emily's health now left her exhausted most of the time. Walking more than a few yards was a real challenge and she needed  supplementary oxygen almost full time. She fell asleep almost as soon as we were airborne. 

                                            Catching a little nap on the way to get new lungs.
This is a photo from the car as we neared the hospital, which is the cluster of large buildings. We are traveling in a big Lincoln Town car driven by Sergi [ my name for him] from Russia, I think. After, a perfect flight the jet landed at Boeing field which is not all that far from the hospital. We had arranged for a town car as they are considered more reliable than a taxi and fortunately we did not need an ambulance. The car was waiting, we taxied right up next to it and the pilots had us and our luggage out in a flash and they were telling the driver to move it. He didn't say much and we all piled in. I was in the front seat, he looked at me still not saying much, so I told him go to the UW Hospital. Still no response. UW Hospital, Fast, now.

 NO response. [I thought my head might explode at that moment] Finally, he said, have address?  I ran to the trunk found a card and gave it to him, this didn't seem to help, so I tried I-5 north. His English and my Russian were about equal, not so great. Communication like this is why we had the Cold War. Fortunately, we could see the highway from where we were and with bit more pointing and grunting  we were on our way. From then on the drive was smooth with none of the feared traffic.  A heavy foot more than made up for any language barrier and the hospital was soon in sight and we rolled right up to the front door. As I grabbed the luggage, Peg was taking care of paying for the car, and since her Russian is about the same as mine that went pretty well[a story for another day.] 

This is a big hospital and the entry lobby and admission area is usually teeming with people, but not this Monday. There was hardly a soul in sight, and that was a little unsettling. But the admission clerks were waiting for us and sprang into action. Almost immediately a very serious nurse appeared and very politely but firmly said that they wanted Emily upstairs in ICU....now! This most amazing day was really just beginning but had already been epic. Things fell right into place. When the call came Peg was already at work but not yet x-raying her first patient. I called her and as planned she immediately left work. Her co-workers were great. I called the jet and it came instantly, the town car was there, no traffic, no lines in the lobby, [we finally realized it was a holiday and this cleared things out], and wonderfully the transplant surgeon that Emily had been working with was in town and available,  it was even sunny out, a gorgeous day. Things lined up beautifully. Sweet serendipity. The nurse took charge and it was off to ICU where they first part of the transplant team was waiting and the journey went into a new phase.

Soccer players, antenna's, and a rotating restaurant

So yesterday was my one month anniversary for transplant!! I had the usual round of clinic appointments yesterday, which makes for a very long day, so we decided to celebrate tonight when we were all feeling rested and up to going out.

All the appointments and tests went very well, I am continuing to heal and progress right on track. The cultures for the mystery blisters came back.....and they cultured nothing. That is good in that they are not fungal, bacterial, or viral, but it is also kind of frustrating because now they are even more mysterious in that no one has any idea of why, or where they came from. They have just been deemed "minor ulcerations." The important thing is that they are healing up nicely, getting a little smaller everyday and beginning to scab over. The minor infection I had going on in my new lower right lobe is cleared up as well, and all of my labs came back normal.

So, lots of reasons for celebrating, (not to mention that it is also St. Patrick's Day, one of my favorite holidays, being that I am half Irish and my favorite color is green). So we went to dinner at the top of the Space Needle (thank you Joan), combining our evening of celebration with a required tourist experience. 

The food was awesome, some of the best seafood and steak I have ever tasted. I had a little trouble when we first got up there, seeing that I am still on morphine and my world is already always spinning, being over 500ft. in the air in a rotating restaurant did not do much to improve my equilibrium. Fortunately my stomach settled after a bit and I was able to thoroughly enjoy my meal.

I mentioned my new fascination with ice cream in the last post, and now I am discovering that I am just fascinated with food in general. I have not really had an appetite for the past five years, and now being able to breath and starting to exercise again, I have finally got my appetite back and I now understand why gluttony is one of the seven deadly sins. (But since I need to gain about 20lbs. I am not worried about overeating at this point.)

(Another thought on that, I think I am the only 25 year old woman that I know who is trying to GAIN 20lbs. and is drinking weight gain shakes, instead of weight loss shakes.)

The view of course was amazing from the top of the Space Needle, and we were able to find our apartment building, which was cool in a dorky sort of tourist way. I have to say though, the highlight of the evening was that the newly founded pro soccer team of Seattle was having a special dinner at the top of the Needle tonight, and the entire soccer team was in the lobby when we got there. Talk about eye candy!!!!

One of the players went to my high school (yes Jean, that would be Nate), and my dad kept trying to get me to go talk to him. Even though we went to the same high school, I don't actually know him, and having gone through a fairly recent, rather traumatic and prolonged break up, and massive surgery, (not to mention that I have total morphine brain), I have not exactly gotten my mojo back. And waltzing up to a pro athlete in front of news cameras and saying "hi, we went to high school together" was not something I felt inclined to do. I was also wearing a tutu and St. Patrick's Day themed antennae, and although I was having fun in that outfit, I was not in uber-sexy-hit-on-the-hot-soccer-players mode.

(Just for the record, it was a stylish, big girl tutu from Jcrew, not some pooffy ballerina thing.) 

Anyways, we had a very lovely evening, both Keith and Peg got tipsy off of one glass of wine while I was stuck drinking a Shirley Temple. Because again, I am still on morphine and mixing alcohol and narcotics is generally not a good idea.

Even with all the good food, hot soccer players, holiday, and celebrating, I think my favorite part of the day was going to the gym. To even think about going to the gym and working out is amazing in and of itself. I can't tell you how long it has been since trying to get some excercise was not a matter of trying to stay alive and ward off the progression of my disease, versus something to go do to stay in shape and prolong my life and health in a normal way. Nobody really likes going to the gym even when they are in peak condition, but there are plenty of other physical activities out there that you actually get excited about doing. For the past 7 years I have put a smile on my face, popped a vicodin, and sucked up the pain in order to be out in the world doing the things I love, even though my lungs and body were screaming for me to stop because they had to work so hard to get me down a river, up that rock, down that slope, or up that hill. Just laughing was painful because all the muscles that had to contract over and over again with all of the coughing would also contract when laughing, and instead of enjoying a good laugh I would start coughing so hard that I would almost pee myself and/or throw up. Now I can go to the gym and actually do an effective work out and not cough once!! My body hurts because it is recovering from surgery and I have lost all my muscle mass and I am totally out of shape, but it is now a good kind of hurt as I recover and get my strength back. 

More and more through this experience I am discovering how important it is to take pleasure in the simple things in life. A good meal, a restful uninterrupted sleep, a vigorous long walk that reminds you of what it is to just be alive and breathing deeply.

Mystery Blisters, Crab Legs, & Haagen-Daz

It has been a very busy last three days. So busy that I have not had any energy to type at the end of the day. I have been composing updates in my head, and I wish that I could just plug a USB cable into my ear or something and have a new posting transfer over to my computer and type itself, but as far as I know they have not come up with that kind of technology yet.

Monday was an epically long day. Every Monday I have my clinic appointment with the Transplant Team. Before the actual appointment I have to get blood drawn to check drug levels, do PFT's (Pulmonary Function Tests to measure lung function), and get a chest x-ray. This week my blood draw was at the lovely time of 7:30am. It takes us about 25 minutes to get to the hospital, so we have to be leaving by 7am. I am not a morning person. 

Clinic went really well. All the drug levels were good, my weight is stabalizing, and PFT's are really good. The only minor set back is that I cultured pseudomonas. (I had a bronchoscopy last friday and one of the things that they do is take mucous samples to see if anything is growing in the new lungs. Pseudomonus was something I grew in my old lungs, and it is still in my sinuses, so there is always the chance for it to trickle down into my new lungs.) This is of course not ideal, I want to keep these lungs as pristine as possible, but in the broad spectrum of potential complications this is fairly minor. I find it more annoying than anything because I have had to start one more medication, and I am already on enough drugs to kill a horse, so the last thing I really wanted was to add one more thing to my toxic cocktail. But that is how it goes, and I REALLY want to take care of these lungs, so you just do what you have to do.

This week was also my first appointment with the surgeon since being discharged. (yes ladies, the hot one!) So after about three hours in the Transplant Clinic we had just enough time to grab some lunch before my appointment with the surgeon.

Dr. Mulligan, my surgical god, got called into surgery right before my appointment, so we ended up having to wait over an hour for him. (This is not at all unusual, a lot of his surgeries happen unexpectedly and as frustrating as it is to have to do a lot of waiting, you really can't get upset because he is saving someone's life.) This waiting time did give me the opportunity for a much needed nap, so really it worked out fine.

I got a very good report from him. I am healing nicely. My x-ray looked good, except for one spot on the lower right that is still retaining some fluid, but he said that that is very common and as I continue to get more active it will take care of itself. My incision looks good, and my chest tube sites are healing well too. The only thing that is weird are these mystery blisters!! Dr. Mulligan had no idea what they were, his Physicians Assistant had no idea, the nurse had not idea.......basically everyone is puzzled. 

So my last appointment on monday was with yet another doctor (since I obviously don't have enough already) in the Dermatology Clinic. Dr. Wang is a tall, quiet, Asian man with a slight lisp. He was very nice and very thorough, but it was kind a funny moment when I had to pull my exam gown apart and show him, his two male Fellows, and the flamboyantly gay nurse these weird blisters, which are on my boobs. There is nothing quite like bearing your breasts to four men at the same time and having all of them gasp in unison and then let out four consecutive puzzled "hmmmm.....'s" 

They took two biopsy's of the larger blister sight, which has popped now but was very deep so I have this sort of concave spot just to the left of my sternum that is starting to scab over. Both blisters each have a red ring around them that kind of looks like ring worm. Weird.

The biopsy's were sent off to the lab, and we should be getting the results next week. So really, I have no conclusive information about the mystery blisters, except that they are indeed a mystery.

Other highlights from this week: My friend Elizabeth came up over the weekend, and along with a bunch of random things my parents and I had requested from Eugene, she also brought a pizza from PRI!!! Now, for those of you not familiar with PRI, I will explain. The Pizza Research Institute, or PRI, is a local, family owned restaurant in Eugene. It is a 100% vegetarian and vegan establishment, 100% organic, and only uses local and regional ingredients. They make the most AMAZING pizza!! A lot of you might find it weird, since there is no meat, and they put pretty much every fruit and vegetable known to man on their pizza. As weird as that might sound, just wait until you have your first experience with ricotta and peaches and portobello mushroom! Mmmm!! Delicious! 

Also while Elizabeth was here, we all went to Ivar's Salmon House dinner saturday night. I gorged myself on 1lbs. of Alaskan King Crab Legs. Try as I might I was not able to eat the entire pound, but I got awful close. I LOVE crab, but I think the best part about crab legs is getting to play with your food and dissect the meat out. It makes you savor it all the more, having to work for it.

On sunday two more of my girlfriends came up from Portland. I have known both Petrel and Jennifer since first grade. We went to a Thai Restaurant not far from our apartment that I had been wanting to try, and had a lovely, lingering lunch just talking and catching up. 

(As you can probably tell I have been doing a lot of eating. Now that I have my appetite back I am actually enjoying food, and eating is something I find pleasurable again. I am finding particular delight in ice cream. For longer than I can remember I have not liked ice cream because the coldness of it irritated my throat, which would then irritate my lungs and then make me cough and cough and cough. Now though, ice cream doesn't make me cough!!! And I think I am making up for lost time, because I cannot get enough Haagen-Daz to save my life! I have been eating about three ice cream bars a day, the vanilla ones with milk chocolate and almonds. Mmmmm!!)

Along with lots of eating, I have also been doing lots of sleeping. On monday I was so tired after all my appointments I went to bed at 7 o'clock. 

An now, thinking about it I think it is time for another ice cream bar, and then a nap.

sat march 7........ update

A little update. The week since discharged has odd, both a blur and a grind. A little excitement as Emily so well described in her shower puking incident. There was a bit more of that but is settling now, and some appetite is now returning. The transition from  IV to oral pain meds has some difficult moments. Sorting out dosages, and the oral meds seem to cause a little more GI blues.  Monday was a day full of appointments at UWMC. This is now the weekly routine for next month or more. Starting  early monday Emily visited the pulmonary labs to test the capacity of those new lungs, excellent results, although for quite a while her effort is limited by the tightness and pain from the side to side incision. This is healing well. Blood is taken for labs and they always take lot. A nutritionists and a scheduler. Then a few new, to us, folks from the post transplant team. All of the nurses, techs, docs, social workers, etc., spend lots of time with you. They are very thorough and familiar with Emily's history. She will be working with these folks for the rest of her life. These are serious sessions as they are monitoring the healing from the transplant and looking for any problems with infection or rejection. There is a constant flow of people in and out and the head doc came and went a couple of times. On friday it was back to the hospital. Emily had a broncoscopy scheduled, this will be a fairly regular event to check out how the new lungs are doing on the inside. We saw some photos, amazing, the union between the old and the new lungs is healing very nicely. The difficult thing about this procedure was having to fast before the procedure, and wait to eat for a few hours afterwards. Thursday evening Emily finally had an appetite for the first time since the major vomiting incident, and she went out to eat, Indian food, with her friend Ashley. The good food and conversation made for a nice night out. By the time the bronc was done Em was so hungary I thought she was going to eat some of the instruments. The attention that is paid to the post transplant patients is impressive. After the bronc there was a fairly long sit and recovery period. During this time Peg asked the nurse, great as always, about a couple of places that had appeared on Emily's incision. (About a week ago two blisters formed right on the incision line. Just good old fashioned blisters. They look like something you would get after a long hike with ill fitting boots. Seeing as as there are no bandages on the incision anymore to be rubbing, and Emily has been wearing only loose fitting t-shirts, we are all puzzled as to what could have caused a couple of big blisters.) The nurse was puzzled, so she went and got the pulmonolgist, who was puzzled, she got the attending pulmonologist who was puzzled, so he called  and asked a question of the dermotologist who appeared in less than five minutes and was puzzled. Being the puzzled parent I stepped out into the hall and called the nurse at the Transplant Team and with in five more minutes the PA from the chief surgeon appeared. He was puzzled, and they will all check it out again on monday. Puzzled, not as yet worried. Try and get that much attention on your next office visit. Em will now be seen at the Dermatology Clinic on monday as well as her now normal round of appointments at the Transplant Clinic and she will be having her first appointment with the surgeon since discharge There are a few clinics that we have not visited but we still have time. It will be a very long Monday but at least Emily will be able to eat which will make things safer for all of us. A poorly fed Emily is not the best companion.

Friday evening was very sweet. Elizabeth, Em's friend and former housemate, arrived from Eugene with very special cargo. On thursday Em placed a special order for her favorite pizza from Pizza Research Institute, Elizabeth picked it up thursday evening, and then placed it in  a  cooler and delivered it to Seattle. It was superb ! We liked seeing Elizabeth a lot too. They did some good walking and have another outing today. 

........sorry not to have posted more, the week just slipped away.  

It was just brought to my attention that I have not posted anything since the vomiting extravaganza, and quite understandably this has alarmed some people and you are probably wondering if I have stopped vomiting yet.

The answer is that yes, I have. Things on the GI front have improved significantly. We went out to breakfast this morning and I ate so much that I made my stomach hurt in a different way.

We are just sitting down to dinner so I will post more later.