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

monday after noon & evening

 All is well. The schedule can be odd. Emily is just finishing an hour of inhalation therapy, followed by a crisp 8 lap walk ( just powering along on room air, no O2),then a half hour of percussive therapy This has been the most even of days, no major downs. Even is a good thing

Tomorrow more of the s ame we hope. Still waiting for the air leaks in the new lungs to seal so the tubes can be removd. Patience is good for the time being. More tomorrow, all a wee bit sleepy.

Keith

monday mid day

hey everyone. supe quick. Emily making a nice comeback from  bump just walk 18 lds,a   mile           

sunday......yikes

First off Emily is doing very well this evening, spending sometime cleaning and grooming. The long transplant operation, extended sedation and long hospital time leave you feeling a bit on the funky side. With four chest tubes and a couple of IVs there is no real bathing in sight for her. So she is doing what she can and for the first time since last monday wearing some regular clothes. A nice change from those butt baring robes that they so elegantly clad you with in the hospital. Today Peg and Nicky unpacked the decorating box. This was packed before listing  and based knowledge from way too many hospitalizations through the years. Hospital rooms don't tend to be all that cozy, the first time Emily was admitted at about 5 years old We looked at this this little kid in that big white room with a real sinking feeling Not a warm place. So we plastered photos of friends, families, favorite places and things. Most importantly pix of Emily doing some of her favorite things. Folks coming into the room saw the pictures and would stop and really look. We still do this.  There are five, poster size montages of photos. This reminds Emily of who she is and of the things she has done and will soon do again.  Nurses, docs, techs , and visitors will often study the posters. Asking where was this or what are you doing here. She becomes more of a life loving person rather than only a patient.  There is also a string of prayer flags and misc personal items. A string of christmas lights will be next if they will let us. The decorations are personal and fun.

So to the  yikes in the title bar. Sunday, morning at least did not workout quietely as hoped. In fact it got a little sideways. The transplant has gone so well that it is easy to forget the massive nature of this surgery, recovery and real fear of rejection. The surgery and series of hospitalizations that stretched on for three months exactly three years ago are very fresh memories. I think that we have all been prepared, perhaps expecting something. Last night was my turn sleeping in the room. Peg had the night before and Nicky before that. I was up until about four and had been asleep about a half an hour when Emily gave a small cough, as I went to the bed asking if she was ok, the door flew open and in ran a nurse asking very loudly if she good hear us and was breathing. Their screens at the nurse station told them that her oxygen levels were down and falling rapidly. Not a good thing at all. They increased the O2 and activated a call for help and it came in hurry. A special nurse from ICU with a respiratory therapists  and a few steps behind the surgical resident always present on this floor. Emily by then was sitting up, dazed and less than lucid due to being drug out of a deep sleep and lack of O2. It was horribly confusing for her. The RT got some special treatments going and these helped bit but not enough. Finally Emily started some serious and painful coughing and out came a huge plug of mucous, almost instantly her O2 soared from the upper sixties to 99%.  Upper 60's bad, upper 90's good. A quick xray was taken. The fear was a pulmonary  embolism or pneumothorax(collapsed lung). Before long she was on her way to imaging for a CT scan which is one cute trick with all the tubes in place, it was the damnest pile of stuff imaginable.. Then back up to the floor. She was now feeling pretty good and returned to her room. It was

 about 8:30 and time to start the day. Turns out the air leaks are still present and she haas some crepitis( air neath the skin causing puffiness.) She is asleep now. As Emily was on the gurney waiting to a third lung transplant patient came up . Yep, petite,blond,CFer, transplant, few years older. go figure.

late and tired typed over the course of evening.

Keith

Keith   

       

sunday : 1:30am

All is quiet and well. We are taking turns in Emily's room. Peg last night, Nicky night before. 

Emily is sleeping deep, breathing slow at the moment. A fine sight. Her respiration rate is about 14 per minute. After months of almost always being near 30 most of the time it is a glorious change. Last evening on walk number three. She paused and said, "I am walking along and breathing with a new set of lungs. " I asked he how that felt and with one of big smiles she replied, "good, real good, lets keep walking, I need to get in more laps." 

morning to friends of Emily, can't say we are real church goers but I think we will all pause for more than a few minutes of thanks on this day. something pretty powerful is happening.

Keith

note that there is another relatively new posting  just below this one.

sat evening

Emily is fine. Two walks today of 8 laps each. These are a fairly big deal and everyone is pleased how strongly she is moving. She still uses the walker but hardly leans on it for support just to carry the stuff. 

We will gradually settle into a slower pace than the last few days. The next big step will be the removal of a chest tube. This is evaluated several times a day. The medical staff wants to be certain that there are no more air leaks in the new lungs or the connecting points. Today Emily was very tired, still not really sleeping or eating well yet. First visitors today.

She is actively reading blogs and Emails throughout the day. They definitely provide a lift and diversion from the medical grind.  

 

Early morning

hey blogsters,

just a quick end of the day report. Emily did 10 @ 10.  Ten powerful laps at 10pm. So good.

We had an interesting few minutes this evening. I was down the hall and Peg called and said everything was fine but I should come to the room asap. I eased into the room and sitting there in a chair was a young blond woman, in a hospital gown, mask on, gloved up, and IV poll. Peg and Nicky were across the room with slightly incredulous expressions on their faces. I started to say hello to  Em and realized, that's not her. Emily is sitting 10 feet away. A young blond woman, in a hospital gown, mask on, gloved up and IV poll. Same age. Same height. Same weight.  Same disease. Same transplant.

We were there watching , listening and occasionally joining a most extraordinary conversation between two people with a common bond  that is beyond normal human experience. A lot of courage in two strong battered little bodies.  The club they belong to is  select indeed, with a most limited membership and the most demanding of qualifications.  Another thing to ponder and be amazed by in this most awesome of weeks.

good morning,

Keith

progress report started fri am

First: Emily is still doing well. Hard to believe that it is friday. This week has sometimes seems a minute long at times endless. Fast time and slow time. The tortise and the hare. As Peg and I were waiting during  the transplant, that was some pretty slow time. The moments before way fast, a bit too fast. We all knew it was time for a transplant but separating in pre-op that just rushed right at us. It wasn't so easy walking out of that room and glancing back with the anesthesia team starting to get serious  .Started this  about six hours ago but we are moving a bit slow. Emily is out of ICU and on a regular medical floor. Many of the patients have had some pretty major stuff, transplants, open hearts, etc......It was a strange move. The plan had been one more night on the ICU but a patient somewhere in the building was in major trouble. Turns out Emily was the healthiest patient in ICU, and they were full, so we moved. Packed up the circus and left. Which was fine put got things off schedule and it was 3am before it was bedtime. And like any good hospital at about 6am teams of professional loud talkers start cruising the halls, being Seattle they all have the $5 coffee and ae wired and ready to go. Chipper, chipper, chipper. After four nights in the waiting room it hard to match their good grooming and chipperness. I think maybe Peg and Nicky fell asleep between bites of oatmeal.

Actually we are chipper because Emily does continue to do great. The epidural is still in place and the morphine pump at work. The drugs while controlling the pain are not without side effects. Emily is quite sure that she had a large dancing pineapple in one corner and a polar bear cub in the other two nights ago. I'm thinking it is some kind of sign that climate change is happening quicker that was expected. Walking is a big deal and tonight was an eight lapper at a very brisk pace and able to talk. She also had dressings changed and got to see her scar for the first time. It is looking good starting to heal and very impressive. Ir runs form arm pit to arm pit in gentle arc just below the bottom of the breast line. The chest tubes are still in but two may come out soon. This a big deal, real progress. The collection devices that the tubes feed into also indicate if there is air leaking into the pleural space. you don't want that. It occurred a number of times three year ago and resulted in a Pnumothorax, a collapsed lung. Post transplant she had some air leakage, as expected, and the leaks seem to have slowly sealed. This is wonderful healing and progress. The tubes are very uncomfortable so getting them out is very good. 

She is doing well....had her first visitor......got lotsa of energy from that and hoping for her first real sleep. Will try and get out more news and earlier tomorrow we have been pretty much sleepwalking today.

Keith 

afternoon report

Another good day is moving along. Emily did another walk, an four lapper parts with no oxygen.

The medical folks seem genuinely delighted. Everyone comments how well she is doing at the moment. A couple of Iv lines have been removed today. These were not your garden variety lines.

One in the wrist was arterial and had been a real bother, often leaking and making a mess. the other in the side of the neck with enough plumbing parts to rough in a small home.

 Emily is down totwo IV sites. One in the right forearm and the other her port( this is the permanent IV access that is a small receptor placed neath  the skin in her upper chest.)

She is way less tangled up now. Appetite is  pretty good.

She is starting to feel well enough to use her laptop a bit . Emily read mails and looked at the blog. This is a very good form of therapy. keep up the good work. Pain is in check.

Peg and Nicky will strt posting soon.

Keith

keith

The lost posting of weds

FYI: I had some technology issues with a posting. It has just gone out but is listed by the date I started it.  if you want to see it scroll down the list of postings and it is titled: 6:15am 2-18-09(post got lost). check it out. 

Em is sleeping now.  A good thing 10:00am.  and the pain docs just came in. pack of two feel good docs. Mcsteamy and MCdreamy. OK it is an hour later, we are not masters of our own time .

Keith 

Good Morning! 2/19/09@8am

Good morning beautiful people! Had a good night, long though because one of last breathing treatments doesn't get started until 2am! It takes about half and then no one is allowed in the room for another half an hour after the treatment is finished. It is this really intense stuff called Anfoterisin . (its nickname being "anfoterrible"because the side affects are so harsh.) It is an anti-fungal, which in general are pretty harsh medictions on the system, and it is good for me to breath in in order to protect my new lungs, but not good for regular lunged people to inhale.

Anyways we didn't get all of that done until 3am, and then didn't actually go to sleep until 4am, and then they wake you up at 6am for that morning's chest x-ray, and then between 6 and 7am the Dr.'s come by to do rounds, and then the nurse comes into to do her morning assessment, draw labs and feedme  my cup full of pills. So by 10 o'clock I am ready for a nap.

At one point I had 17 different access points for different drugs to go into, and some for drainage. I went through two arterial lines on m right wrist, but they both failed, so ended up with number three in the left wrist. I also have my Port-a-cath accessed, and then this wicked cool thing on my neck called a SWAN in my neck. The SWAN is a series of IV catheters that all go in at the same place, but then once they are in my neck they split of inside different veins so that they can deliver different things to different parts of the body. I also have a foley in for peeing, and then FOUR chest tubes to drain off all the blood and fluids from the surgery I also have to have blood pressure cuff on at all times, and a nasal canula for oxygen while these new lugs rest and recalibrate  to my body.

So yeah, that is a lot of holes with tubes. Talk about the Bionic Woman.

Okay, I am falling asleep while typing. More late.

emily rose

EMILY SPEAKS 2/19/09 @3am:EMILY SPEAKS

Hello Loved Ones!!! 

Well, I have finally come out of my morphine fog long enough for my Dad to show and explain about this wonderful blog that has begun.

I will start posting my own accounts too,  but seeing that it is 3am, I thought I would just publish under Keith and say a quick hello!!!!

I love you all so much, THANK YOU, THANK YOU, THANK YOU!!! For all of the support, healing energy, prayers, meditation, and love you have been sending our way. 

I ca 't even begin to explain what it feel like to breathe with new lungs. I don't cough! Can you believe that?!?! Me NOT coughing!!!! It is incredible!!! 

It is also kind of weird because it is so different than the past twenty-five years, and I have an epidural, so I can't feel the majority of my torso anyways.

We have already had some medical and personal experiences, and we are only on day three. The insanely high doses of prednisone that I have to take are REALLY rough on the hormones, so I have been prone to random fits of crying. I also had a total momentary break down and called one of the the nurses "nurse Ratchet" and kicked her out of my room.( If Keith hasn't already told that story, I will tell you more later.)

Today was the first day I was allowed to get up and go for a walk, so I went for two walks. I also have a new fascination with Jello, and just can't seem to get enough sugar-free snack cups to save my life.

Okay, I HAVE to go to sleep now. I have been awake since 5:30am with a non-stop stream of doctors, nursed, chest x-rays, lab draws, eating copious amounts of jello, trying to take a nap, not trying to think about sushi, going for TWO walks, and acting like a crazy person who has crazy amounts of crazy drugs pumping through her system.

I think Keith and Peg need especially need your help now. When I was still intubated I ended up punching both of them because they couldn't read my handwriting. On multiple occasions I have been transposing words, like calling the sink a bathroom, and the bathroom a sink. Last night I still had an IV in my left radial artery (not vein, but artery so they can get consistent blood gas levels.) And mine refused to stop bleeding and the poor nurse had to change the bandage like eight times. Before I came too after the surgery they had to restrain me to the bed because I kept on trying to rip out my ventilator( the machine that breathes for you until the new lungs are breathing their own . I also keep professing my love to the pharmacy tech who delivers my morphine.

I am sure my folks and Nicky have mane more funny antidotes from the last few days.

Thank you all again for everything you have done for us to help us get through this process.

I REALLY look forward to seeing the folks that are headed up here relatively soon!!! An others, I look forward to  seeing you back at home, or wherever our paths cross again.

I can Breath, i can breath! OMG! I can breathe!! Yippee, hurrah, hip, hip, hooray!!( If Keith wasn't sound asleep in the chair next to me I would actually be shouting out) Maybe tomorrow.

XOXO

em

steppin out at 11

It is getting near the end of a pretty long but excellent day. Emily continues to improve. She just finished a three lap walk with her posse in tow. Just as good as a stroll in the garden. Had to stop to rest a couple of times. but basically Em cruised. She continues to eat well and has fewer IV bags hanging as meds are being switched to oral as possible. The high doses of steroids she is taking is making the management of her diabetes (yep, got that to deal with too) a bit harder but she is sorting that out with each meal.  She had to have some dressings changed as she was getting some bleeding at the chest tube insertion points. Seems ok now.

At the moment she is getting a bit of a bath. Partly to refresh but also to guard against infection as her immno system is so dramatically suppressed to prevent organ rejection. It is very complex and there are a lot of very bright and dedicated people working on making this transplant work. The skill of the surgical team was spectacular,sublime. Take a minute and ponder how complex our wonderful bodies are and then try and imagine what they have done. Magic. Now the task is to avoid infection and rejection. This is always, Emily will now be on some level of anti rejection meds for her lifetime.

After the bath she will do an inhalation therapy. Many of you close friends have been around as she has done these through the years. Thousands of them. Tonight's is a bit different, the medication is so powerful that we all must leave the room and stay out for an hour after the half hour treatment. This is to try and prevent the return of the fungus that wasted her lungs over the past years. She is tired but happy tonight. Tomorrow will be a day of evaluation and tweaking of pain medications and walking.

Good night from Seattle from us all Emily, Peg, Nicky & keith

Keith

1:30pm 2-18 Walking and breathing !!!!!!!

Emily just took a walk ! What a feat. She is doing just fine. She walked around the floor twice. Bout like walking around a full size volley ball court for each lap. Had supplementary O2 and just cruised , breathing strongly every step. breathing well. she has not done that for a while.

We looked like a parade of cast off medical hardware. This is the way it worked. Emily used a rolling walker, elbows at 90 degrees resting on pads. Just needs a rocket and she is in a Bond movie. Hanging off of the walker are four plastic 'boxes", hooked to 1/2" tubes that go into her chest cavity and drain off any blood or of liquid from the pleural spaces. Chest tubes. These are powered by two portable pumps (shoe box size) . Then there was the ever present IV pole with several pumps and bags. Yikes...lots of stuff. Emily was masked up as she will be whenever she leaves the room. You could see the smile in her eyes. She is now back in her room waiting for food.  More walks later ...it is quite a production and her nurse Krista is a wizard to pull it off.

I have been fortunate to have hiked in the Grand Canyon and in some of the most beautiful mountain ranges in the northwest. I have never been on a walk that was more satisfying. unlikely, or beautiful. We all loved each andd every step and breathe. 

More later today, plz know that we appreciate each and every thought.   we are overwhelmed  by mail. Don 't stop it helps but it willbe a long reply before most replies are made.

Keith

quick post at 7 am 2-18

Emily had a good night with her pain under control. the plan is to walk today. I am writing more but it is taking a while and it seems like folks are watching closely. Keep writing. Emily just asked me to read to her, nothing is too short,redundant or simple and then she really knows you are with her. more soon.

thx keith 

6:15am 2-18-19 weds (post got lost)

This was started weds morning and all but the first sentence or two was vaporized, I will try to recreate this post now ,weds evening, it may be a bit jumbled and out of order.started writing on weds morning.

Good morning to all FOE's. (friends of emily's). This has been a good night in just got a set of new lungs sort of way. Emily is deep asleep at the moment and has been for a couple of hours. Her pain has been well managed, as they say, for the night. Still in ICU with her own nurse. Medical stuff : She is laying flat on her back with her four IV sites and eight IV pumps and eight bags on one side of the bed. On the other a second IV stand w two more pumps for the second of three units of blood she is receiving and the  for her mix of pain meds. The big one is morphine which is your friend when you need it, relief. This is on a demand PCA button. (she needs it she pushes). Once awake last night Emily did some intense negotiation with the nurses and docs  of the pain management team (small pack of white jackets). This  is something Emily is good at. She can rattle off her past meds and experiences with each. She deals from a position of strength and experience, when it comes to post op pain and distress she has been there. She also has four chest tubes. These are soft tubes about .5 inch in diameter. They go in between her ribs, two left and two right, high and low. the tubes are hooked to four collection devices which are taking some measurements and then suction is applied. This drains blood and fluid from out of the pleural spaces in her chest cavity. They hurt her. Feel your ribs and how tight the space between each, not much room for plumbing. The epidural, which works on a relatively specific area, really helps control this pain.

On one side of the head of the bed is the breathing machine which was hooked to the tube that led to the intubation. It is pretty sophisticated, it allows the medical staff to set respiration rate and volume among other things. It has a very sensitive alarm, if you even consider not breathing well it lets out a howl that could make King Tut sit up and suck in some fresh desert air. While it was helping Emily breathe it puffed away softly. A bit ominous and a bit comforting at the same time. On the other side is a monitor displaying vital signs. When Emily was heavily sedated it was hard not to just stare at this, I think the three of thought that if we kept an eye on it we could make sure that her vitals stayed good. She had some issues with low BP, I think when her dropped a point or two Peg Nicky and mine went up about twenty. I am surprised that one of our heads did not explode. Right at the head of the bed is another rack of hardware, suction devices and other stuff. More stuff than NASA had to get John Glenn into orbit and way more computing power than when the  Apollo was in trouble. All this stuff is more than a bit scary, how could one petite woman need all this stuff? But this stuff and the nurses and techs that run the show along with the docs and surgeons are what have helped make this miracle. It is an incredible synergy. The nurses are remarkable. Their shift is twelve hours and in ICU for a transplant patient it is pretty non stop and intense. They are making some very serious medical decisions one moment and tucking a blanket up the next. Emily has been very lucky with each shift change as yet another fine nurse introduces their self for the next half day.  Each shift has had very different needs as Emily's condition has evolved. 

Peg, Nicky and I have been catching a bit of sleep as we can. The ICU waiting area is the place of choice. It is at the junction of two wings of the hospital, the ICU and a wing for those recovering from thoracic surgery. There are three elevators serving this spot. You hope to get one of the three couches. Two are near the automatic doors to ICU. They make a pleasant thumping noise sort of like dinosaurs chasing wounded prey through the jungle. Makes for creative nightmares. The third couch is near a huge saltwater aquarium gurgling pleasantly away. No dinosaur dreams there you just gotta get up to pee all night. Maybe some dreams with the music from Jaws.  The couches are in three pieces carefully crafted to fit no part of the human anatomy. Each time you roll over the pieces move just a little bit, threatening to swallow you up. They are just large enough to fit no one but somehow Peg and Nicky both slept on the same couch for part of Monday night. It is hard to relax with the elevators coming and going letting a new crop of visitors unload  every few minutes to check out your snoring and drooling. P & N rented an apartment for us today at Transplant House. This is a place set up just for families in our situation. 

It is about 9:30pm now and Emily is hoping for another walk soon. It will take Coco her current nurse about twenty minutes to assemble all the stuff for the walk. Sort of like launching the lunar lander. Her pain is still doing well. Her appetite good with the anti rejection meds havie her really wound up and talking away. I th

Well it is now thurs morn. and I admit that this will never get finished. The walk was great. We looked like those old timey parades when then circus comes to town. We thinking about getting a couple of Clyesdales to haul stuff. I pretty sure my job will be to follow behind with a wheel barrow and shovel and clean up. we all got our skills. Peg is getting a well deserved nap now

 after covering some of the long am hours. Her turn to be on display for the elevator people and packs of white jackets (the early morning hours are when they are most active and alert. Later in the day they tend to group in twos and threes and travel in stair ways communicating in odd languages full of big words) there are also packs of blue backed scrub people. They are everywhere and do everything they seem to never pause. Some of the nurse have evolved(that wouldn't happen in Kansas) to a more colorful plummage  and sport all sorts of colors. lizard green being a fav.

I give up and will post this now. The circus is preparing to move for the first show of the day.

For you river runners or sailors we look like a poorly rigged boat that has way more line than it needs. More Later.

Keith

"it feels great" posted @ feb17 7:50 pm

it feels great. that was what Emily said two hours ago when she was extubated. She is now breathing on her own and filling up her wondrous new lungs. She is doing remarkably well .

The afternoon became very long and difficult. Filled with some pretty horrible pain. The weaning off of sedatives and switching to the epidural block proved to be a long painful haul. It took a long time to find a balance between letting Emily surface and have a manageable level of pain.  The last hour was epic. She first had to breathe on her own but while still intubated. This was hard, the more alert she became the more the tube bothered her. Gagging and hurting and in great general pain from the surgery. The last few minutes, endless, she wanted and needed that tube gone. Once removed she was stunned for a few minutes. We were too, watching her breathe on her own, deeply. At this moment the lungs are working beautifully. She still has great pain, of the level that very few have had to deal with.  The pain meds have been tweaked and as of a while ago things were tolerable. The night will be a challenge and tomorrow when she begins to get up and walk some she knows that it is going to hurt a lot. She knows this but is looking forward to moving. 

There is still a long path ahead but this is a great start. She has to heal the incisions externally and internally must also heal where the new lungs were attached. Perhaps the gravest concern is rejection of the new lungs. Emily has all ready begun a vast array of anti rejection meds and antibiotics and other. This morning she had five IV sites and eight bags and IV pumps  going at the same time. ICU will become day to day.

She has good spirits and attitude right now. She is a bit whacked out on the meds and bossing us all round and saying some pretty outrageous stuff. 

I think we all feel that this is the first hurdle was gigantic and up til now has sailed over it. This has been a most amazing last day and a half. Thanks for the support. While Emily was in some of her worst pain today she had me lean over of the rail of her bed and tell her who was writing and a bit of what was being said. She was squeezing my thumb, an old trick of her when she is in bad pain. One squeeze meant yes or good. As I mentioned each name or message she would give me one long mash and a slight head nod. ( Rhonda the nurse would gently say don't move your head Emily). After about 45 minutes of this she was starting to drifting off and my thumb was a new shape. More tomorrow. Before I could post this I was called back to the room and had the great honor of helping Emily stand up and she is now sitting in a bedside chair. She is trying to cajole them into a walk but will have to wait until tomorrow. This is incredible. While there I read her a bunch of messages, she truly relished them.

Keith       

feb 17 1:12am

The epidural was successfully placed and is slowly being brought into use for added pain control.

Emily received a lot of pain meds for this procedure and this will need to wear off before a breathing test  and tube removal. It will be at least an hour.

Thanks for joining and being followers of Emily's. However several folks are creating their profile and not really saying who they are. Some of the names are so cute we don't have a clue who it is and without pictures or a note we are not able to tell Em who is writing. Plz include a note  and  or pix. She/we want to know who is there and hear from you.

Keith

tues feb17 11:30 am

A quick posting with just a little news. At the moment a team of docs from pain management is preparing Emily to place an epidural block to help control her pain when she is taken off the ventilator and the tubes removed. When that is done she can no longer be on the heavy sedatives that have kept her so quiet. Those meds would suppress her respirations. Once the epidural is placed she will do a trial bit of breathing  on her own and then be extubated. Then breathing on her own.  

That is going to be a big moment so send some extra thoughts this way for the rest of the day.

This procedure will probably be quite painful for her because she will have to be repositoned.

Keith

feb 17 7:30 am

feb 17.  7:30 

good morning. Emily had a good night. remained sedated. She is communicating some, mainly with hand squeezing to respond to our questions. She also opened her eyes for the first time, good to see.  Only took us about ten minutes to sort out she wanted chapstick and mouth swabs. I understood a bed adjustment pretty quick and wash cloth. She of course has serious pain but it is being well managed at the moment. Emily was using sign language to try and tell us something but she was using an alphabet I am not familiar with.

The plan is for an epidural to be placed this morning and then to be extubated afterwards. She will then breathe on her own with her beautiful new lungs. We are just a bit excited and nervous about this.  

A team of docs ( they travel in packs in their white coats and most are as good looking as grey's anatomy)  was by and generally very pleased. ICU for today and tomorrow, at least.

Please keep up the e mails and visits to the blog it helps Peg and I a lot and we can feel all of you out there all over the world. We are reading some to Emily even though she is still not quite with us. It was a long but good night. More later. We won't get to many personal replys for sometime but keep stuff coming.

Keith

Day Two 12:25 am

Emily has new lungs. I think this is a miracle. She has been out of surgery for about five hours and is in a private room in ICU since around 9 last night. She is doing well. Heavily sedated and on a ventilator which is according to plan. She does not really respond to us yet. Her color is remarkably good . She will be in ICU for at least a couple of days. She will love hearing from you. Either on the blog or email. You can send it to her or my address keithmonfort@gamail.com 

Our dear friend Nicky is here and she Peg and I will take shifts with Emily for the next hours.

I will post an in depth account of today sometime later. For now she is doing well. Please continue to think of and pray or whatever it is you do, for Emily and her donor and family. We are very thankful tonight for this new chance for Emily to breathe again. 

Day One 8:15pm update

#3 8:15pm

We had a glitch and you did not get the first two on time. We'll sort that out but for now a friend will be forwarding to you.

Emily is out of surgery. She has new donor lungs. She is on a ventilator, as planned. Still in recovery and we have not seen her yet. Dr Mulligan her transplant surgeon was pleased. The lungs are inflated and she is perfusing well. Her old lungs were just about ruined.

More as we find out, probably later tomorrow, this will be a long night for her but she will do well.

Keith

just got word, she is now in icu, we will see her in 30 minutes.

Day One 6:00pm update

Update Two: 6 pm

We just received our second call from the OR. The first was an hour and a half ago.
First call, Emily's left lung had been removed and the donor lung placed. Second call they are stitching in the new right lung. 1-2 more hours. The nurse said she was stable and doing well. Emily is tough. I could barely hear the nurse because the music was so loud in the surgery theatre, Emily had evidently made some requests. The lead surgeon will visit us afterwards. I will mail again as soon as possible but it could be a bit, as we will go to the ICU as soon as we can. Keep up the powerful prayers and thoughts. The waiting room we are in is usually packed but today is a holiday and no regular surgery. There are three families in here, all have a family member receiving organs form the same donor. Lungs, heart and the third I am not sure.It is awesome and humbling to think about. Mails are great I will read them to Emily in the days ahead.

Keith

Day One 3:30pm update

Update One: 3:30pm

To all family and friends.
This is a quick update. from Keith (emily's dad if you don't know me) the call came at 7:30am. we were on a charter jet by 9:30. in Seattle a bit after 10:00am. they were waiting at UWmed and we were in ICU in a flash and they swarmed on Emily like a pit crew. She was in total control joking and smiling as they put in multiple IVs. About eight nurses and a handful of docs. Then down to a quick xray into pre-op and some huge hugs and see you in a little whiles, Peg and I left her in some very good hands. That was at 12:20. The transplant began at about 12:30. I just spoke with the OR, a nurse six feet from Emily, he said she was doing well and had at least four more hours. Hopefully they will call is soon with more information. It is now 3:30. Please send thoughts and prayers Emily's way, she is strong but everything helps, we can feel it at times like this. Also, offer our thanks and prayers to her donor and their family.
I'll mail every now and then. Thank you.
Love from us all.
Keith

no flowers for now.not allowd w transplants. emails, cards good (willpost adress later)

lungs!#*%!!!!

Hello Everyone,
We just got the call and are dashing to seattle!!
Since I will soon be in la-la land from the pain killers, one of my parents, or our good friend Nicky, will be sending out an update to let ya'll know how it went, (and all of the crazy things I am saying while blitzed out on morphine.)

Here is my mom and dad's, and our good friend nicky email address' if you want to check in: keithmonfort@gmail.com

peg.monfort@gmail.com

nickyconnors@gmail.com

We will be setting up a blog soon.

love you all,
em

Listed

....That's right, I have FINALLY been officially activated on the transplant list!!!

Now the waiting begins. (Or continues more intensely, depending on how you look at it.)

Thank you for all the love and support, we are really going to need even more now as we wait, and then once the surgery happens and I begin my recovery process.

I look forward to walking, running, dancing, singing, jumping, laughing, crying, yelling, screaming, and just living with you all and NOT COUGHING!!!

Happy Valentines Day and love to you all!
emily