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