Hello everyone, this is a quick hello. I am headed to Seattle tomorrow once again for a broncoscopy and an appointment with my pain doctor. I will do a real post soon to let you know whats been going on. The most important thing is that I am doing very well, and sleeping the best I have been able to sleep in years. Sleeping well is a complete novelty for me, so I am thoroughly enjoying this new phenomenon. It is amazing what having an adequate amount of air allows your body to do.

Three Weeks Out

Howdy Folks! I imagine that you are on the verge of being upset that I or my father have not been posting recently, or you are already upset and have been for a while. It is hard for both Keith and I to remember to blog when we return home from a Seattle medical adventure, because for us things return to normal, and it doesn't seem like anything is happening that is worth blogging about. But I know that our normal is nothing like what most people would consider normal, so we should do periodic updates about how my recovery is going, and if this family is still retaining it's sanity. ;) 

So with that said, we are going to try and remember to blog on a more regular basis and not let the blog die like last time. But please forgive us, and be patient with us. I am still on lots of morphine and can't remember anything. (I feel like I am 80 years old and have dementia. About ten times a day I walk into a room and cannot remember what I was doing or why I was there. I forget to hang out with my own friends, when they call me it's like "oh yeah, duh, I have all these wonderful friends, I just can't seem to remember to call them. Sometimes I have to re-read a chapter of a book 3 or 4 times because I can't remember what happened in that chapter, even though I know I have already read it).  And poor Keith has been under so much stress for the last 7 months that his ability to remember things is greatly challenged too. Same with poor Peg as well. There are little post-it notes everywhere in the kitchen and dining room because the three of us have to write everything down as a back up because we know we will probably forget it.

It will be three weeks tomorrow since my last surgery (and tomorrow is also my birthday). I woke up today feeling the best I have felt since the last operation. I am almost afraid to say this because I don't want to jinx anything, but so far it feels like the surgery has worked! The pain I was having before the surgery is gone, and even though I am still having normal pain from the surgery, I am no where near the amount of pain I was in before. The hole in my diaphragm was the size of a silver dollar, which allowed a good sized chunk of liver to pop through. After months of the the edges of the hole rubbing against that piece liver, all those tissues were very inflamed and irritated on a deep visceral level causing the extreme pain I was in. (Every time I took a breath the piece of liver would rub in and out of the hole. Think about how many times a day you take a breath and think about all the friction that would be created by the tissue of the diaphragm rubbing and rubbing against the tissue of the liver as your breath goes in and out. It doesn't feel to good, trust me.)

So besides having the physical relief of having the pain gone, I am also feeling validated in my decision to have this surgery, and from having to push to get it. (I have not read all of Keith's post's so I don't know what all he has said, so forgive me if I am repeating him.) I had to fight really hard to get this surgery. I had a really, really difficult time getting anyone to believe how much pain I was in. Finally, on one of our trips to Seattle for regular clinic, Peg and I said we are not leaving Seattle until I see a Pain Specialist, my surgeon, and a Dermatologist. (I also have a mystery rash that no one was addressing so that is why I was demanding to see someone in Derm.). I also completely lost it and broke down in tears because I was at the end of my physical and emotional rope from enduring that pain for months. Males do not do well with floods of unstoppable tears. One of the Post-Tx Clinic nurses is this wonderful guy named Jo, and even though he has been a nurse for like 20 years and has seen it all, he still has not built up much of a defence for buckets of tears.

Finally I seemed to have gotten someone to understand, and Jo was instrumental in getting all of those appointments scheduled quickly for me. Both the pain Dr. and the surgeon (the same one that did my transplant) couldn't believe that this had been going on for so long and that I should have surgery to fix things as soon as possible. Hearing that took a lot of weight off my shoulders. I had been starting to think that I was being a wimp and nothing was really wrong, and that I was becoming hypochondriac and an annoying and needy patient. So hearing these two prominent specialists confirm that there was something wrong was a huge relief.

From there things moved fast. Surgery was scheduled for the next week, so we had about five days at home, and then back up to Seattle. From there Keith has you caught up with the actual operation and hospital stay.

This post is a lot longer than I thought it was going to be. I guess once I start typing, I really get going and it is hard to stop. Also the morphine makes me kind of ramble.

Love to you all, thank you, thank you for all the love and support.

back home...tuesday morning....09-22-09

Today is two weeks since Emily's surgery to repair the hole in her diapraghm and push the liver back where it was meant to be. We have been back in Eugene for a week. Emily has been resting a lot and is moving very well, this is really encouraging. Her range of motion is much better than pre repair.  Many movements that were painful before  are now manageable. Knock on wood, the early indication is that the repair was the cause of at least some of the pain. There is still a lot to deal with from post surgical pain and Emily is starting to work with this through her physical therapy. Hopefully, this surgery is a platform from which to launch the real regaining of strength. The last months have been a real test, an unexpected holding pattern that has not allowed as  much activity as Emily expected this far out from transplant. She is ready to hit the reset button and get on with expanding her life.  She has had a steady stream of appointments with local medical folks,this past week, to keep everyone updated and send current info back to UW. A post surgical and regular check is in early October, we are wearing a groove in I-5.

tuesday morning........09-15-09

The big news is Emily was discharged monday evening about 6 pm and is now still working on a

much deserved long nights sleep sans xrays or lab work or docs making rounds in the early am. I did hear a noise early this morning and for a moment was afraid that the surgery team had tracked us down and were going to pop in and ask us how we were feeling. I think it was Max the cat making his rounds. We are at very dear friends Rosanne and Ted's house. They so graciously provide us our home away from home while we are in Seattle, which is pretty often.  So medically Emily's post surgical healing is going well. Yesterday, at one pm was the broncoscophy. Tube down the throat under concious sedation, a look for infection and rejection and biopsies to be tested for rejection [this is the sure test].  There have been quite a few of these post transplant.

The problem for Emily is that she has become so sensative to the sedation that recovery afterwards has become an adventure in waiting. Time is marked in hours rather than the normal minutes. Yesterday , she was so deeply under that there was beginning to be some serious concern. But she gradually,  really gradually, returned.  She surfaced, it was a real battle, first just some little twitches then trying to open those big ole eyes of hers but with eye lids that had become so very heavy. This took hours, early on I had stepped out for some air and Peg was so concerned by Ems' lack of response that she called to let me know. Another, new PR from outside the hospital to the the recovery area. We can both still move it under certain conditions. After waking about half way they returned Emily to her room on 5NE for a bit of obserservation before  discharge. This is not the norm but we were happy to do it. Peg and I finished undoing the room, taking town the string of party lights, prayer flags and photos on the walls and saying bye to some of the most wonderous nurses. It was good to leave as it had become a pretty long week, good and in the big picture hopefully very valuable but long and tiring. You start to think maybe you have spent a lot of time on the floor when not only to you know most of the nurses but also have a nodding acquaintance with the team that is cleaning the area. And you recognize all of them from all of the round the clock shifts and they say hello.

Late in the day yesterday I was coming up the stairs [you are a regular in the hospital if you use the stairs all the time and avoid the elevators]. Not really paying attention when someone coming down gives me a friendly slap on the shoulder. I was really surprised and when I turned it was one of the surgical fellows who had been checking on Em this time and who had assisted on her transplant in Feb. This is a busy man who as far as I could tell had not left the building this past week. Yet he stopped me in the stairs and asked hey how is Emily this evening. Got a quick report and rushed on down the stairs. Just another small reminder that besides the being wonderfully skilled the docs, nurses, techs, etc really do care. 

So, Emily is sleeping now. our goal is to get back to Eugene in time for her to join her buds for there tuesday night burger and brew, now that will be some good medicine. Thanks again for all the support, please keep  it coming. Now Emily will see in the next weeks if this surgery has truly help at the source of the pain. We are very hopeful and optimistic. But it has been a tough week and it is a journey that goes on and on.....  

Monday morning 09-14-09

Briefly, yesterday was pretty routine as hospital days go. Emily DCed her on demand pump for pain meds. This is always a big step as you are casting off the quick IV pain relief and relying on only oral meds. Also, another unit of blood was given late in the evening to try and get things back  up to stronger levels. Today  is a broncoscophy and if all is well discharge this evening.  

09-12-09 justabout mid night pacific time.

 Emily is still at UWMC. As always seems to be the case the ride has is ups and downs. Recovery from surgery is progressing nicely. With the chest tube out and the incision on the mend.  The significant step that was taken early this morning was first the stopping of meds by epidural and then removing the epidural from Emily's back. This is always a pretty big step, after the transplant it was a rough transition but today has been good. The post surgical pain is at a reasonable level. It will be a while before Emily knows if the repaired herniation has relieved some of that pain. So, that part is good. Not as good is that for the past couple of days Em has been having some real difficulty breathing. This is a surprise, since having her transplant that has not been an issue. She has been having to do inhalation and percussive therapies. Walking has also been a challenge because of breathlessness. The hope is that this is just post surgery gunkiness which can bother anyone. Tomorrow will bring some more evaluation and on monday a probable broncoscophy to check for infection or rejection.  Having neither would be good. Discharge from here could be as early as Sun or who knows. Some other tubes have been DCed and tonight was the first post surgical shower, that  was was, I think a blissful moment as at the hospital you can have all the hot water that you desire. We also had a fun moment today when Emily Skyped with a bunch of family members back in Detroit where they are celebrating my Aunt Doris' 90th birthday. From hospital room to the motor city, who would have thunk it.  Night all, bed time on the west coast, gotta get some shut eye before the morning xray.  

09-10-09....5:30pm.....update

Hey from UWMC. Last night Peg stayed with Emily and had a pretty good night with reasonable rest, ended by 4:30 am xray, lab work and the first of the medical visits beginning around six. The various visits produced some info and changes. One of the really useful pain meds is being stopped at this time, a cautionary move because of potential side effects. The chest tube which was draining the surgical site was removed this morning. This is a pretty big deal. It's removal means that surgical healing is on a good path and because the tube is in between ribs it was probably causing no small amount of aggravation. Lab results also brought about a decision that a a blood transfusion was need and she is currently receiving the second of a two units of blood.

The best medicine was a visit from lifetime friend Jean who drove up from Pdx on her day off and spent several hours visiting . This was great, they have been buds since the first grade. Emily and Jean did a good walk around the floor. This is appropriate since they use to hand the baton off to each other in sprint relays back in middle school, sweet to see them still going round a track of sorts together. Later this evening another good friend Ashley, who lives in Seattle, is going to drop by after work. Tomorrow will be a day of evaluation, how is the healing going and the pain. Emily still has an epidural in and it will be day to day on when to discontinue it. Her nurse today is another Emily, who she has had many times, also a river runner so that they have many tales to share.  So a good report for the day, still serious pain but better today and a tiny bit of appetite coming back. 

09-09-09 10:45 pm pacific time..... update

Last night, the first of post surgery went about as well as these nights can. Emily has now had a lot of these the last few years. The nights go by at an odd pace, slow as a slug and then just rushing. The main theme is to try and find some rest and ease the post operation pain. While nothing like the transplant, this was still major. Emily did sleep quite a bit but was still hurting badly, she was slugged heavily with morphine. Many short sleeps interupted by sips of water, ice chips, ice bags, wet clothes etc. Morning started about 4:30 with and xray, soon followed by blood draw and then then parade of medical folks. The surgeons were happy, the pain folks tweaked some meds and called in some heavy hitters which eventually made the day much better .By the early afternoon Emily was able to get out of bed and sit up for a while and then this evening the first walk. Short but sweet with the familiar routine of pulling along the the whole hardware store for the brief parade round the floor. A good walk with the promise of more tomorrow. If all is well the one chest tube may come out tomorrow which should really help with discomfort. Last night was my night at the hospital and Peg is there tonight. There is a chair that expands into a single bed and it is not half bad in a better than sleeping on the floor sort of way. We are hoping for a boring night. We have had our excitement for this evening. Just before seven we went to the cafeteria for a quick meal Emily was so deep  asleep that she did not stir when we told her we were going to eat. It is a real trek to the cafeteria. Down three flights then a couple of hundred yards of hall and lobbies and then down two more flights. Kind of you can't get there from here. The hospital was very quiet and the dining room almost empty. Just as we were finishing the intercom started call for help on Five NE, one of us said something like thank goodness Em is on SE, to which the reply was, wrong we are on NE. So, we started walking pretty calmly back, but the intercom  was still requesting help, stat, as they say. We weren't too worried but still PR'ed on the five flights of stairs and hallways back up. The hallway was full of medical folks but not not anywhere near Emily's room. When we got to her room she was awake out of bed and feeling pretty darn good. Her nurse was just back in the room after responding to the emergency but not being needed. Ironically, she was Emily's nurse in Feb when Em had her middle of the night crisis and the current problem was in the same room Em was in then. We are pretty sure this person is ok, we sure hope so. We were awfully glad to see Emily just sitting there. Worried for the other patient but a bit giddy to see ours.

So, whew, for much ado about nothing but for some other family a big deal. Will post this now and hopefully again tomorrow. Emily has friends coming to visit tomorrow. This will be good.  

Tuesday evening @ 6:00 pm pacific time

A quick update: Emily has slept most of the afternoon after arriving in her room at about 2:00. She surfaced slowly from the anathesia of surgery. She is having quite serious pain from the surgery and the hope is that it can be controlled with a boost in her pain meds. That and time to start healing. It really isn't much fun at the moment but she is taking a steady stream of ice chips and just had some jello. Maybe a full meal in a day or two, they have a pretty good salmon meal here that is her favorite. Emily also has established firm control. When she they were preparing to slide her from the transport litter to the room bed, some one asked casually if she could move her legs a bit. The reply was, 'not unless you can promise not to pull on that tube.' They said just please move your legs a bit. 'nope not unless you promise no pulls. ' Well you can bet the promise was made and duly kept.

So, hoping for a nice dull quite night, these first nights post surgical have a history of way more drama than is necessary. We have her bed made up with sheets and pillows from home. A little window box is on the bedside table with a lucky stones from her travels and little tokens that friends have given, a little toy tiger[filling in for Nicky] and watching over us all is Ted the teddy bear who has traveled with her most everywhere for about twenty years. He is an experienced and steady hand. Her nurse until seven pm is an old friend that has helped her for the past four years here at UW. There have been quite a few comments. Thanks to all. If you are just catching up, remember that the posts are from current to old as you scroll down the page. You may have missed some and to click on 'comments' at the bottom of each post to let you see other folks comments. More tomorrow.  

Back @ UWMC Sept 8 2009 for surgery

We are back in Seattle. As posted a couple of days ago Emily is here to have a surgery to repair a herniation in her diaphragm which is letting her liver poke through to where it doesn't belong. The past few months have been filled with great deal of pain for her. It has become a constant and has caused her to have to take a powerful blend of pain meds in an attempt to find some comfort.

These powerful pain meds help but bring there own issues. Emily is very sleepy much of the time and usually not able to drive. The relief from the pain is not complete and the days are often not much fun. I think this level of pain would just stop most of us, through the years she has proven to have a pain tolerance that is just much higher than we most of can imagine. She has also had to endure way more than is fair. The hope, but unfortunately not guarantee, is that this surgery will not only repair the hernia but help relieve some of the pain. Over the last couple of months she has seen a roster of specialists puzzling over the source of the pain and coming up with ideas to help control it. Because of interactions and allergies many drugs are not available. The cause has been elusive and the herniation was discovered while looking at other things. So, for Emily this has been a frustrating few months of quite limited activity. Although, in her typical stubborn fashion she did manage to do a five day rafting trip on the Rogue River last month. This was a stretch but she felt a need to get out and do something normal. 

So, the surgery today is a pretty big deal. Normally, the herniation repair would be a fairly straight  forward repair. But because for the previous operations and transplant it will be more difficult and may take quite a long time. The surgeon, same one who did her transplant, just was not able to say how long it would take. It is going to be a long day for sure. We we up at four, at the hospital at six, she was back in pre-op by seven. The pre op area was the same as day of transplant. That day there was only one other person in this very large room. Today at least twenty two beds had patients with every bed being swarmed by techs, nurses and docs. It is a surreal scene. So many people so intently focused on there very vital tasks. It is both strangely comforting and quite scary all at the same time. Emily seems to thrive in this situation, she is totally calm, answering the the endless queries and being her usual bossy self to make darn sure that the IV, shots, wrist bands, etc....are done just so. But she does have a world of experience at this and usually establishes a strong rapor with the staff. She acknowledges their skill and they understand that she has indeed been here before, all too many times.  It is now just a bit before ten, a little after nine we got a call from the OR that they were just beginning. We will hear every now and then how things go but I honestly do not know how often I will be able to post, so it may be well into the evening before I update.

As, Emily said, she reaally loves to hear from everyone. please post and/or email. We will read them to her until she can do that herself. Thanks for the support we will try and keep the blog going. Oh, for the surgery the 4-6 in. incision will be on her rt side about seven ribs up. Then being very careful of that beautiful new lung, work to the diaphragm and make the repair. 

YIKES!!!!  while I was typing the surgeon walked in. She is out of surgery and it went very well and in about one fourth of the time we expected. The repair was successful, now we hope that it was the cause of all of this pain. Cross your fingers. She will be in recovery for a couple of hours and then to the fifth floor. Her new lungs looked 'pristine'     this is really good news to be done so quickly. Emily loves cards.......if you want send them to our house in Eugene. thx for good thoughts. 

Welcome Back!!! 

So the deal is surgery on Tuesday, September 8th at 6am in my adopted city of Seattle, in my second home, the hospital of UWMC.

Keith will be posting and keep ya'll updated until I come back to this planet after surgery and all the crazy drugs.

If you haven't read the email, or did not receive it, I am having surgery to fix my herniated liver. My liver is herniating through my diaphragm, and has been causing me serious pain for the past few months. This surgery is to put my liver back where it belongs, patch up my diaphragm, and hopefully alleviate the pain I have been having.

I sincerely apologize for having let the blog die, after all of the support you all have given me and my parents you deserve to be kept updated.

I love you all, and thank you for all you have done for me and my folks through this epic journey of transplant.

-emily

Home!

Howdy Folks!

I have a wonderful announcement, I am back in Eugene!!! The Dr.'s released me to leave on the 23rd and we arrived in Eugene lat that saturday night. I didn't post then because my friend Liz and I set up a surprise for my girlfriends, so I didn't want to blow that so I didn't put it on the blog.

I am doing really well, it is so nice to be sleeping in my own bed and be with my dog. I will post again with a more detailed account of the past couple of weeks.

Love you all,

emily

3 Months!!!

Well today is my three month anniversary! I had an appointment on friday (yesterday) and I was hoping to get the okay to go home, but unfortunately I have picked up some kind of bug this last week.  I have been having mild cold like symptoms, and so it could either be just that, a cold, or it could be signs of rejection. They are not going to let me leave yet if it is rejection, but if it is just a bug I think, MAYBE, they will let me go at the end of next week. My argument  to the doctor was, "if you are not going to put me in the hospital and give me some magical treatment I can only get here, then I can go home and have a cold and come back in the two weeks." 

I had a CT scan on friday, and on monday morning I have another bronchoscopy and PFT's, so we will have to see what those results say, and then get the verdict about going home. Our lease runs out on the 22nd, so I hope we get to leave so we don't have to scramble to find another place to live. Also, I am just REALLY ready to go home. There is something quite strange about waking up one morning, frantically leaving your house, catching a plane, having massive surgery in another city, having somebody else's organs put into you, and then not being allowed to go home for three months. Very strange.

Today Keith and I went on a Sea Plane tour, that was awesome. It is also sunny and gorgeous, and actually warm today! A good three month anniversary.

Old and New

So awhile ago I realized that the pictures posted in the left hand margin are awfully small, and quite a few people have said it is hard to see the details of the pictures of the old and new lungs. So I am finally getting around to re-posting them as a bigger image. The first picture is of a healthy lung. The second picture is of my old lungs. Pretty gnarly looking, I am not entirely sure how I was functioning at all with those poor things.

(They old lungs have been cut transversely, there is not four lungs) They are so red from inflammation and my long history of infection after infection. You can also see pockets of mucus and fungus. Yummy, I know. ;) 

Pics2: Pre-Op to ICU

                                   Alright, here is the second batch of pics. We ended last time with our  arrival at Boeing Feild and then driving to the hospital. The above picture is in the ICU were I am being prepped for surgery. There were five or six nurses starting IV's, taking vitals, taking blood, etc. It was kind of crazy. 

                                   All plugged in. (The thing dangeling from my chest is the tube that goes to my Porta-Cath. A Port is a permanent venous access point that I have in my chest all the time, but can de-access when I don't need it, and then access it when I do.)
   This is Dr. Kate. She was awesome. Here she is going over all of the formal paperwork, discussing the risks, possible complications, and consequences of transplant.
   Here I am being divested of my jewelry and personal possessions. The Resident Pulmonologist is looking on while all the nurses continue to buzz  around the room. 
Struggling to get my toe ring off. (I really didn't want to take it off, have had it on since 8th grade and have managed until then to not take it of for procedures, by hiding my foot or charming my way into getting to keep it on. Not for transplant, you do everything they say, no messing around.) Eventually Keith just had to man-handle it off. He is not sure if he could do it again with out pliers, but at that moment he had so much adrenal pumping through his veins it was like the Hulk ripping a car in half.
   Done being prepped, now being transported to pre-op. (This picture was taken at 12:02pm. I received the call for my lungs at 7:30am. In just four and a half hours we flew from Eugene, drove from the airport to the hospital, checked in, I was prepped for surgery, and in pre-op by 12:15. Pretty amazing how fast that all came together. Nobody messes around when new organs are involved.)

   In pre-op. This is were Keith and Peg had to leave. They were in ICU with me and got to walk down to pre-op, then we all said goodbye, see you soon, good luck and all shed a few tears while trying to hold it all together. I was in bed 18, and there was only one other person in there with me. Normally all the beds are full, but since it was a holiday there were no  scheduled surgeries. The other woman there was receiving the liver from the same donor that I was receiving lungs from.

   These are the two anesthesiologists who monitored me during surgery. 

 Here in pre-op I was prepped even more. They started an arterial line in my wrist, which really hurt and was really messy. (They put that in to monitor the amount of oxygen and CO2 in your blood during and after transplant. Those levels let them know how well, or not well, your lungs are doing. ) They did another set of vitals, and began a number of IV drips. (To keep my blood sugar regulated and to keep me hydrated.) Also lots of questions about my allergies to medicine, and my history with pain meds. and anesthesia to make sure they give me the right stuff during and after surgery. 
 Peg walking to the waiting room.    K. adds : when we left the pre-op we walked down a long hall where the public is not normally allowed. We stopped for a couple of hugs and maybe a tear or two, I know we were approaching this door with a bit of reluctance, because once we passed through it we were truly cut off from Emily. The reality and enormity and finality of the transplant was settling in now.   
K : We were in the waiting room from around 12:30 until about 7:30. Did a few cross word puzzles, some suduko, a little reading and a bit of worrying. Peg tried to nap but I do not think that it was a peaceful sleep.
   Here I am back in the ICU after the transplant. I have absolutely no memory of this moment. I am heavily sedated and on lots of pain medication and on an entirely different planet. This picture was taken at 9:15pm, I regained consciousness the next day around two in the afternoon.  More pictures to come of the next segments of this journey. 

K : We were taken back to ICU [same room the prep was done in] about 8:00 pm. We were just a bit anxious to see Emily, although assured that all had gone well, we were needing to see for ourselves. She was resting quietly, very heavily sedated at this point but with good color. We started talking to her almost at once and pretty much kept that up at some level all night and the next day until she was extubated, late in the afternoon. Most of the time we held her hand and if you paused too long she would give a hard squeeze, which we took as the sign to keep babbling.

The room is now very different than when the pre-op prep was done. In the background behind Peg you can see the array of IV stuff. There are about a dozen bags and a double row of pumps on that one pole. Also, at the head of the bed, misc monitors and the machine which is helping Emily breathe, with her new transplanted lungs. New lungs ! The nurse was in the room almost every single moment. 

friday 4-17 post bronchoscopy report

Well, the bronchoscopy was actually today not yesterday, I made a wee mistake and we actually were at UWMC bright and early on thursday. Talk about all dressed and no where to go. Emily and Peg were kind and after pointing out that I was a complete idiot,  said not to worry. It was an honest mistake that any one without a brain could have made.

Today's procedure went well. A bronchoscopy is a tube with a camera sent down the airways, they can look around, do a bit of lavage [washing] or take biopsies. With the extreme fatigue that Emily has experienced the last two weeks came concern of rejection. Monitoring for signs of rejection is the primary reason for staying in Seattle. This doesn't seem very likely at the moment because her breathing tests and other vitals remain excellent, but this is a time of great caution.  A dozen tiny samples were taken from within the lungs and the lab work was done very fast. We got a call right at 5 pm and they told us that there were no signs of rejection.

Whew and wahoo ! A great relief. Now there will be a wait to see if lab turns up any signs of infections. The lungs looked great. Emily's theory of a long slow virus seems to be the most likely answer. So lots of sleep and rest for the next days. 

correction

Okay, so actually today is the 15th, not the 16th and tomorrow is my two month anniversary. So when you read the below posting keep in mind I was having a blond/morphine moment and got confused on what day it is.

Two Months

Well, today is my two month anniversary for transplant!!! 

This is just a quick post to say hello, and let you know that I am working on the next batch of pictures to continue to visual journey of this process. We took a TON of photos, so there is lots of editing and picking and choosing to be done. I am also not the most proficient when it comes to computers, so then getting them posted with the correct comments attached takes some time too. But never fear, they are on their way!!

(I will give a little warning now, some of the pictures to come are pretty graphic. Those of you who know me well know I am not one to hold back, so I had pictures of pretty much everything taken during this process. Some will make you laugh, most will probably make you cry, and depending upon you tolerance for blood some will make you gasp, gag, or possibly full on want to puke and/or faint. So, just a little heads up.)

I know I haven't posted in awhile, now being out of the hospital and stable there is not much to report on a day to day basis. Overall things are going really well. I have had no major complications or issues so far (knock on wood), and my trajectory for recovery is right on schedule. With that being said I am going to now completely contradict myself by telling you that I have been feeling a little under the weather the past ten days or so. I think I picked up some kind of flue/viral thing. I have not been acutely ill, just very, very tired and achy. That mixed with the fatigue of recovering from major surgery has made me REALLY tired, like sleeping 15 hours a day tired. All my labs and the tests for my lung function are stable, so the doctors are not too worried, I am having another bronchoscopy tomorrow so that we can rule everything out.

I think I just have a virus and I am slowly riding it out, but it is taking longer to kick because I did just have major, major surgery two months ago and I am still in the early phase of my recovery. The cool thing is that this has not manifested into a respiratory infection and totally laid me flat. That is a new experience for me because pre-transplant anytime I got sick it would immediately turn into a lung infection and make me very ill. The concept of being able to ride something out on my own is a totally new concept, and honestly kind of weird. 

So, speaking of sleeping I am going to go and take a nap. I love you all, I hope you are all doing well, and more pictures to come soon!

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.

Finally, some pictures!! And a little vomiting story. ;)

Well, winding down from a rather long day. For the first time this morning my stomach decided it couldn't handle all of my new medications. At 9am I have to take about twenty different pills, a combination of anti-rejection and immunosuppression medications, plus a whole cocktail of vitamin and mineral supplements. The anti-rejection and immunosuppresants are really hard on your system, and they screw all around with your vitamin and mineral levels, so you have to take a bunch of supplements to replace what is being stripped from your system. I am also taking morphine, tylenol, and a muscle relaxant to manage my pain. And if that is not enough, I am also on an anti-fungal medication and several different antibiotics to help keep me clear of any infection while I recover from the surgery. One of the antibiotics I have to give intravenously through my PortaCath for three months. It is really strong nasty stuff, that the nurses in the hospital could only handle gloved and gowned, and now I get to inject straight into my blood stream. Kind of creepy.

Anyways, this toxic cocktail did not agree with me this morning. Even when I am super nauseous I take forever to actually throw up. So after two tortuous hours of hiccuping and gagging on the couch, I finally got to the point where things were ready to blow. I am a very loud and enthusiastic puker, and I prefer to be in the shower so that I can just let things fly and not worry about aiming for a bucket or the toilette bowl. So it was with great relief that I crawled into the shower and was able to relieve myself of a stomach full of undigested pills and my breakfast.

I always feel AMAZING after a good puke. Your system just feels relieved and cleansed of toxins, and there is something rather liberating about projectile vomiting across the shower. However, I do have one giant incision running from armpit to armpit right under my breast line and across my sternum (plus four rather large wounds, two on each side just below each breast where the chest tubes went in between my ribs) and my abs and intercostal muscles feel like they have been battered with a baseball bat, so as much as I wanted to throw up I new it had the potential to be VERY painful because all of those muscles, chest tube sites, and the giant incision would have to contract in order to vomit.

Fortunatly it proved to not be as paineful as it could. The benefit of throwing up in the shower is that you do not have to bend over, so I was able to stand upright hugging myself to brace and support my ribs.

Ahhhhh, sweet relief.

As good as it felt to get it all out upchucking all of those pills is not a good thing, because in fact I need them in my system to keep any rejection complications at bay. The Dr.'s expect you to hurl every now and then because it is an awful lot to dump into ones stomach, and then your body adapts over time, but it makes for an unpleasant transition period. 

After my shower I was able to get some chicken broth and saltines down, plus a pepsi to help settle things. The highlight of my day though was going to get my hair washed!!!! I got to take a shower once I was discharged from the hospital, but I can't lift my arms above my head so the prospect of washing, then blow drying and styling my hair proved to be daunting. To my great fortune my friend Ashley is in beauty school here in Seattle, and I was able to go in today and have her wash and blow dry my hair. Oh my God!!!! It was awesome!!! I had not washed my hair in over two weeks! I feel like a whole new person!!

After I got my hair done I was feeling well enough to go out to dinner, and was starving after eating virtually nothing all day. Peg, Nicky, and I went to an awesome little restaurant just around the corner from our condo, and happens to be managed by Ashley's husband Dani. Small world. It is called the 5-Spot, it was delicious, so if you ever find yourself in the Queen Anne district of Seattle, go check it out.

Anyways, now I am just sort of rambling. There was more than you probably ever wanted to know about Emily's adventures in puking, but this blog is full of all kinds of intimate details, so why stop now!!

I posted some pics of me with three of my main doctors, and a picture of my old lungs!!! Nicky found that picture of a healthy lung for comparison. As you can see my lungs were pretty far gone, and actually once they were out they proved that I was a lot sicker and in greater need of a transplant than most of us realized. Dr. Mulligan said that they had to drain off over a quart of pus from my lungs before they could even get started, and normally they don't have to do that. (A quart of puss?!! Ewwww!!!)

Enjoy the pics, I am putting together a slide show of sorts to show the entire hospital journey, so that should appear soon.

Love you all, hope I didn't gross you out too much!!!

A word about this photo.

First, thanks to Craig Thornly was has set up this blog and managed it from afar making sure it stayed up and adding to it through the past days. We had talked about doing a blog well before Emily's call came but had not yet set it up. I tried to send out a couple of group  e-mails while she was still in surgery but his did not work. I called Craig sometime after midnight and he added my mails to a couple of Emily's mails, used her list to notify folks about the blog and launched it. Response was instantaneous and moving. All of your words of support and encouragement have meant  so very much to us all. We read many to Emily while she was still heavily under the influence of the pain meds and now she is working her way through the backlog.

So, the photo at the top of the blog. This is Red Wall Cavern in the Grand Canyon on the Colorado River. It is about thirty four miles from the launching point, at Lee's Ferry, for a rafting trip. By the time you get to this point you have been on the river for several days and are settling into a comfortable rhythm of camping and being on the water. You have also passed through some very big rapids but here the is river flat, you row quietly taking in the canyon which is now very deep with the walls going right up from the rivers edge. It is humbling and awesome and a privilege to be there and see this huge cave. The only way to get there is by the river. The scale of things, distance and size, is all out of whack in the canyon. It is so vast. You start feeling pretty small. When you first see the cavern you are a long ways upstream and it takes  many minutes to float down near it. Look at the photo and take a guess at how many people could fit inside. Someone said as many as five thousand, I don't know but it is huge. Look very carefully at the water line,in the rocks, at the right end of the sandy beach. There is at least one raft, 18' long, and some people there. The time it takes to float up to the cavern is very peaceful, a good time to be thoughtful and ponder about things. This is a very special place and if you have been there you are in a pretty select crowd. Emily has been there twice. Most recently in October of 07 when we spent 21 days on the river after waiting 16 years to get our permit. It was worth the wait. Many thought we were crazy to do this as Emily's health had become fragile. But she wanted to go and has always been a risk taker. Her attitude has always been to go for it. Now I am pretty sure she is already plotting another trip down there, with new lungs. Something to anticipate during the months ahead of recovery. 

Craig picked this picture from his files, he was down there about a year ago. It was a fine choice  a lovely image of a sublime spot. Very beautiful, a bit mysterious. Look at your screen and tilt the top back and forth, the lighting will change, as if you are there at different times of the day. I heard that someone on first viewing the blog, not knowing what they were seeing, asked is that the new lungs?

KM       

   

seattle address

Craig T our blogmaster, just like saying that, has added our mailing address while in Seattle to the side bar.

If you sent something to our eugene address we will get it  as someone is staying there fulltime.

KM

out of the hospital ! added to later in the day

Sorry not to have posted. First and best, Emily has been discharged and is now resting beautifully, breathing peacefully, still asleeep. Stepping back to night before last when we posted the planned discharge. Late in the evening after all the treatments were done Emily decided to walk, totally free of encumbrances. No poles, no wheelchair, no pumps, and no walker. Just her and her new lungs headed off into the the quiet hospital. UWMed is big place and from very early til very late it is just swarming with packs of white jackets and blue backed scrubs and patients and their families and friends. Patients and their supporters and in their bearing you can see every level human emotion from well again to never going to be well again. But at mid night it is very quiet and we went exploring. We did this three years ago but then Emily was in a wheel chair tweaked over to one side with pain a few days after being transported by ambulance from Eugene to Seattle. Not this night, she was striding out and feeling strong. We walked a lot of the back administrative hallways and checked out the very nice art work that fills this building and makes it a much friendlier place than most hospitals. Then we snuck past security and went into the Surgery Pavilion , which is very new and cool building with a flashy stainless steel and glass circular stairway. Up and down for about three floors until she was satisfied. Then back to her room for her early morning blog posting and finally to bed at 3 just in time for the 4:30 am xray and begining of rounds at 6.  It caught up yesterday which turned into a truly endless day and she was in a pattern of not enough pain meds and too much. Uncomfortable or sluggish. The day was filled with final rounds by each team and near constant visits by various parts of the transplant team.

I am going to post this now and add to it later, seems we are busy trying to settle in to our apt.

P & N did a great job finding it. we can see the space needle and mt rainer and the water.

Emily is up, hungary, and seems to have pain v meds balanced. check this uot later, it will have smae tittle just longer

Later : All of the visits filled the day and it was just getting dark as we left the hospital and headed to our new home for the weeks ahead. ( up to two months ). Emily is doing well this afternoon and just got a call from the transplant team setting up appointments the next several mondays. There is now going to be careful and constant monitoring of infection/rejection.

It has been a beautiful day here and we have just been slowly putting things away and relaxing a bit/ It is certainly a welcome change from the pace of the hospital. An address for our new place will be posted soon. No doubt Emily would love to heat from you by snail mail.

thanks for helping us get this far.

 

 Keith

Discharged.

So, as Keith just posted I get to go home tomorrow!!! Yippee!! But more importantly I get to take a shower tomorrow!!!! For the past nine days I have only been allowed to take sponge baths. (I never want to see another baby wipe again.) You cannot shower or take a bath when you have chest tubes in, and  then you have to wait 24hrs. to bathe after the last one gets pulled. I finally have all four tubes out, three came out yesterday and then the last one this morning.

Keith has already explained to you about the humming as part of the removal process, and this morning I had a very entertaining moment when the last tube came out. 

It was very early in the morning, and I was particularly blitzed out on morphine, and definitely not awake, but trying my best to keep my eyes open and be alert. The Doc had everything set up for tube removal, and he gave me the go ahead to take a few breaths and then hum as soon as I was ready. I took three long, deep breathes, an act that I am endlessly fascinated by these days. I cannot even begin to describe to you how amazing it is to be able to take a full breath. To be able to breath in and not instantly begin coughing is still such a novelty. And being able to pull, and inhale air all throughout my lungs, all the way down in my back to the deepest lobe and have those little aveoli sacs fill and plump up with oxygen, swelling and filling my chest, is almost a religious sensation. I can just sit with my eyes closed and breath endlessly, each breath like opening up yet again my favorite ever christmas present.

I think I was off somewhere deep in this rhythmic breathing orgasm dance when a voice comes floating through asking "Are you okay? You can hum anytime now, whenever you are ready." I opened my eyes and slightly tilted my head, blinked in confusion, and said "yes, I know, I have already hummed a whole song, why haven't you pulled the tube out?" Everyone crowded around the bed busted out laughing, and I realized that only humming taking place was INSIDE my head. 

Last night I made some pretty outragious comments, all morphine induced of course. In the wee hours of morning Peg was helping me get to the bathroom and then back again, and as she was helping support me to lye me back down, I said something to the affect of "What are we going to do when I run out of armpits for getting the refugees to South America?" Don't ask,  I don't remember saying it, and I have no clue as to what I was talking about.

Those are just a few examples of my drugged induced rumblings. Keith and Peg kept all the notes I wrote them while still intubated, and once deciphered those will be out of control. We have also been taking many, many photos, documenting this journey and its many hurdles, steps, and triumphs. We will get some of those up here soon. I am of course inclined to post ones for sheer freak out factor. There are some pretty gnarly ones of bloody chest tube insertion sights, my poor traumatized skin from all of the rebandaging and endless amounts of tape. I have also managed to gain about seven pounds in water weight. The edema has begun to subside, but I kind of look like the Elephant Lady from Barnum and Bailey's Circus. I have the definition of kankles, my toes look like little sauages, and my whole feet are about three times theor normal size. (I am afraid that my tattoo on my foot is going to get stretched out=( A few days ago I was so full of water I looked like I was about seven months pregnant. Also on my left soulder and ribs I have what is called crepitis, air in the space between your bones and skin, it makes you look puffy and swollen, and in my case lopsided, and feels crunchy when you press on it. It is caused when there are holes in the lungs and air is leaking out to wear it is not supposed to be.  

I could go on and on about all of the weird random things I have been experiencing, saying, and doing during the least ten days, but I will save some for later.

Most importantly I have reached one of the first major checkpoints of this process, getting to get out of the hospital in a timely fashion with no major complications, and begin the long road of rehab at home.

Okay, the morphine is making it extremily difficult to piece together whole sentences, so I must go to sleep.

Love you all, and the next check in will be about the first transplant adventure outside of the hospital.

weds 10 pm grinding away.....and very good news

Time for the inhalation treatment. This has been a long day with some hard work and good results in the afternoon. Last night was my night away from the hospital (we have all had one)

and Peg was in the room for the night. When I arrived about 9, did a double take, no one was there except Ted the teddy bear that has been taking care of Emily in hospital rooms for almost twenty years. He was holding a cardboard sign : gone to breakfeast. That was so cool. The cafeteria is forever away, a really long walk. When I got down there was Emily, Peg and Ike. Ike being Ems IV pole, Ike has worked like a rented mule this week. Not only were they eating a huge breaky but had some fine news. Rounds had occurred and as all was good the final chest tube was pulled. Sweet. As the day progressed Emily walked down for xrays and pulmonary function tests. These are to establish base line measurements for the new lungs, as they get stronger and be on the lookout for changes that could indicate rejection. Also another attempt was made at weaning off of the epidural. It seems to be working. At some very rough moments with pain coming in waves but it seems to be closer to controlled. Oral morphine is now the big helper but not without some side effects. The dancing pineapple seems to be back and there is a short fat guy dressed in purple and green where the polar bear used to be. She is pretty stoned at times and is concerned that her armpits may be in south america.

mid aftenoon we had our second medication class, learning the various new meds. About twenty different meds each day, pretty darn complicated but for a CFer all part of a lifetime of a medical mystery tour. 

During the late afternoon the surgeons came by again and after reviewing the breathing tests and xrays said that if the night went well there was no point in staying here any longer. Get outta here. go home. good news. So hopefully Emily is out tomorrow and we will move to an apartment that we have rented for a couple of months. It will be good to go. oh, all IV are now unhooked for the first time since transplant monday on the 16th. Free at last. Free at last.

Tues 10:31 pm. some bumps...more good.

This has been a most eventful  day. Emily is well and at the moment doing her inhalation therapy treatment, the one where we have to clear the room for an hour. Perhaps, a little perspective. From a distance I imagine that this transplantation has seemed a bit like a really good Hallmark Movie. You know all beautiful shots and smiling characters all around. Things have gone well, we are constantly thankful and humbled by what is being done here. But there is also a gritty and earthy side to all of this. The days are a fog in some ways. It has been typical for the last formal medical treatment to end at 1:00 am at the very earliest. Then at about 4:30 am is the first chest x-ray of the day, taken to be available for the surgical team making rounds between 6 and 8. First oral med is at 6, another batch at 9. Overlaying this is the constant to and fro of the nurses changing IV bags, taking vitals and after the horrible night when Emily's O2 levels plunged they make damn sure the telemintry devices are sending accurate info to the monitors in the nurses station. They never rest, the nurses, to work on a floor like this you had better be good and we are in awe of their care and devotion. We are profoundly grateful to them. But back to the night, just in case emily gets the idea of sleep the techs drop by every now and again to draw blood. The days don't quite settle and everything is a major production. need to pee ? It is a chore for Emily. It takes at least 15 minutes to align all the tubes and lines and collection devices. Then pee. Then reverse it all. Wanna walk? Same deal but add in more gear. All the while monitoring pain and protecting the incision. The incision which opened the way to new life. The path for those worn out lungs to leave and and the gift of the beautiful new ones to enter. Hook your thumbs in your armpits, imagine a smiley face connecting those two points, following a line just below the breasts but above the bottom of the rib cage. That is it, the big cut. The surgery team looks at this whenever they are in and check the tubes insertion points and output. Today the liked what they were seeing and promised and afternoon reevaluation. At around 10 the pain team entered, they are very thoughtful and kind. They recommended a bold move, discontinuing the meds going into the epidural block. Time to try to wean off but with a certainty of more pain. A necessary step. After an our or two some pain returned and then it came back with vengeance. Almost bringing her down on walk and back to bed, While there was a scramble to restart the  epidural and up the morphine. The pain eased but the morphine brought  a terrible wave of nauseau and retching. A really bad thing when you have been cut from side to side. After a too long of this an anti nasuseu med brought this under some control. At just that moment the surgeons, they also travel in packs of at least three, reappeared  with the big dog in the lead. This was a rare afternoon sighting of the transplant surgeon. A good but busy guy. After some serious talking and discussing they decided to pull two chest tubes . Wahoo! This was done a few minutes later and x rays a while later confirmed that at least for the moment all is well. A few hours later, sweet surprise , they came back for a third. This is an important step at a critical stage. Three years ago, when things got side ways , this was pivitol moment. Right now all is well and we just know it will remain so. Then it was off to x ray, Emily refused a ride and walked, they had to get special permission from the charge nurse, to allow this. While the tubes were pulled they asked Emily to hum to help seal the hole while it was stitched. 10 days ago if you had asked her to do this she would have had to shake her head no. Breathing was so hard that she had begun to pause between words. Today she let out such a long loud note that the surgeon started to laugh. Peg and I just teared up a bit. Emily grinned, as did the angels cause it was a sweet sweet sound that did not end in a racking fit of coughing. All you old RMS choir folks would ave approved.

Tomorrow, perhaps the 4th and final tube will be removed. We hold our breathe that all is good with the first three gone. Nice idea, Emily can now hold her breathe again. YES. So while not as smooth as that hallmark movie, today does get past the bumps and leave us all feeling good and optimistic. thanks for the support, keep it flowing........

Keith              

Letter from Shannon

Keith asked me to post this letter written by Shannon to Emily a few days ago. It was originally an email and then Shannon posted it as a comment but it quickly got buried.

FELICITACIONES!
That's congratulations in Spanish, (I wanted to say SOMETHING different from what everyone else must be saying and the rest of this email will probably be all the same stuff, so... there ya go!)

I can't tell you how shocked/excited I was when I got your email about the phone call and quick flight up to Seattle. I was expecting a long, impatient wait for all of us and then all of a sudden you are there, in the OR, getting new lungs. What an incredible feat, Emily. I wish, (but I don't really) that I could feel what you are feeling now- how it is to breathe in a new set of lungs when you are so used to those old, dirty, mucous filled ones you have been using for the past 25 years. Does it feel clearer, cleaner, or just the same but with less work? Or does it just feel painful.... Probably the latter, at least for now.

I'm so impressed with your attitude and spirit throughout this process. And not only THIS process of getting a lung transplant but this entire process, from when I met you in Edison, through Roosevelt and South Eugene and on through college. I have never seen you as anything different from anyone else. You played soccer, ran track, went to Activity Nights and all night graduation parties. You have always been a social butterfly and I continue to forget that you live with this gruesome disease everyday of your life. But at the same time you have also always been so open about talking about CF and spreading information to anyone who was willing to listen. For me, being incredibly interested in anything science or health related, it has been so great to feel comfortable asking you about the specifics of your latest procedure or listening to explanations about exactly how CF affects different parts of your body. I love hearing those stories because I'm a total science dork, but also because you always sounds so confident and informed. You and your parents know more about this disease than 99% of the nurses who have taken care of you, which has allowed you to make decisions about your health care, something that most patients can't, or don't have the guts to do.

Working in the hospital, especially at Doernbecher's, has really opened my eyes to the brutality of cystic fibrosis. Again, I never saw you as unhealthy. I only remember the massive amount of funny colored pills you took in the Edison cafeteria before lunch, and occasionally walking past the nurse's room and seeing you sitting with some sort of funny looking mask breathing out mist. But now I feel much closer to this disease because of working with these young kids. It has made me realize where you actually went during those few weeks every year that you disappeared from school and drove the 2 hours up to Portland. I can relate a little better now having talked with 17 year old young women having to put on that huge vest that pounds into their chests, coughing the entire time. And I now realize how different your life has been than mine. But somehow, through it all you have maintained close friendships and strong family relationships while continuing the activities of daily living that we all take for granted. Over the past 25 years you have found a delicate balance between making conservative decisions about your health while enjoying life and all it has to offer.

So, congratulations- for accepting this disease but keeping it at a good distance at the same time. You are truly an inspiration my friend! I hope to come up to Seattle and see you while you are recovering, but if I don't make it up before you go home, I'll see you soon enough in Eugene. I can't wait to hear the new and improved, cough-free Emily. Rest and recover.... I hope you have some good movies and maybe some seasons of Sex and the City to watch while you are up there!

Shannon