I'm Going Home!!!!

Had a great checkup today at the transplant center and after one more breathing treatment I get to  go home to Montana!!

It has been hard trying to not get excited but now that I can see the end I'm afraid its a lost cause. I miss my friends and  loved one's so much it's embarrassing. Must be all the medications that are making me so emotional :) 

Hoping to catch a flight on Friday!

Just can't stay out of the hospital!!!!

Thursday sept 1st I was experiencing some pretty severe abdominal pain and was convinced it was  related to the drain that I still had coming out of a tube that had been installed in my lower right abdomen. I went to the transplant clinic to be examined and they drew some labs eventually sending me home telling me if it became worse I should call and possibly come back. Well, at 2am Friday morning I was catching a cab to the emergency room and having difficulty even walking. As it turns out, the same drugs that offer pain relief can also have a very detrimental side effect of "stopping things up" if you know what I mean. Kind of ironic the guy with Chrons disease being stopped up....I would have laughed out loud but I was busy crying (not really ). So, I can now empathise with the other half with that problem. The hospital is so huge and so busy that although I came in at 2am it was 3pm on the next day before I was admitted to a room. Unfortunately it was a shared room , but I figured I would be out of there the next day no biggie. Three roommates and five days later ( and I cant tell you after how many oral laxatives, suppositories, and enemas) I was finally allowed to leave.  Of all the humiliating things the worst by far was having to have an NG tube re-installed through the nose and down into the stomach. This is what is used to remove the "stuff" the stomach is producing since it wont go through the other way and when you hear about people getting their "stomachs pumped" this is it.

As you can see I am not a happy camper!!! No fun putting it in and no fun having it pulled out!!!


I have to say that I was a bit envious of my last roommate who was admitted on Sunday and had received a kidney transplant. He was eating the second day and was released before I was!!! no fair ( I had not eaten or drank anything in the five days I was there) I remember it was a huge event that I could even begin to have ice chips after many days after my transplant. But I finally stopped feeling sorry for myself when they said I could go home>..........

(Happy Face )

I am currently at 170 lbs and to put that into perspective when I arrived here I was fluctuating between 220 and 227 with all of the water I was carrying around . So I am looking a bit gaunt and feeling a bit shaky but I cant tell you how wonderful it is to have no pain in my legs and feet and my eyeballs have returned to a normal white color.

NEW LEGS !

I have an awesome scar that is now going to be the focal point of my "grizzly encounter up the south fork story" :)  that I would love to post a picture of but I am afraid it is a bit too graphic.

Well that's enough for now, suffice it to say that I am planning on staying out of the hospital and I cant wait to be home I miss it so much and cant wait to see everyone. Talk to  you all soon.  JB

Went home Friday night!

Was able to go home Friday evening after lots of "de-briefing" and a breathing treatment in a plastic bubble installed over the bed

I cant tell how great it felt to breath some outside air and the warmth outdoors even though it was late evening. Mom and Alfie and I relaxed at the hotel and enjoyed part of a Greek sandwich and salad.

It was us up and at the hospital at 7am for the 3rd and hopefully last steroid treatment . Today we spent running a few errands getting some mail taken care of and a little hair pampering for Mom. I learned some valuable lessons about just having major surgery, 10 lb weight lift limits, and taking it easy. We were at Petco and dogs were bearing teeth and I instinctively picked up Alfie to put him in the cart and immediately fell flat on my face. Scary feeling. Gonna really have to watch it and build things up slowly.  Well a real day off tomorrow and am going to take full advantage of it with an early afternoon dinner with my best friend from High School and then back at it at the Hospital on Monday at 7am! 

Friday Aug26th Update.............Rejection???????

    Fist off sorry about the long delay since the last update , I know I promised to keep you all informed and then promptly stopped doing so. Unfortunately we misplaced or lost the charger to the laptop and it put it real damper on the updates. the other side of it is over the last week I have not continued to improve as rapidly as the first early days right after the transplant on the 16th and have had very, very full days of various treatments and activities and yes, I am still in the hospital.
   I hope I didn't scare anyone with the title today but apparently in the game of organ transplants rejection is a very, very common thing and occurs at some point in almost 90 % of organ recipients. After last weekend I was doing very well and the new liver functions looked good but as the week progresses the liver numbers continued to creep up slowly and my legs and abdomen swelled again with fluid and  the pain level was not improving as it should have. Slight improvements had came and by the end of last weekend all of the major tubes and drains (which were numerous and all special in their own little and sometimes not so little way)  So when early this week I had to go back under and have an additional drain re-installed and another central line installed down and through my neck for meds and labs and other procedures I was a little disappointed when what I thought I would be hearing is that I would be heading home.
     Ok, so back to rejection...finally yesterday the decision was made to change the course of action and hit me with a blast of steroids which is a three day treatment. Naturally, when I was told it was possible rejection my brain jumped to the idea that now I needed a different liver, this is a bad one etc , etc.. but I guess when you think about it when something the size of a football that isn't yours is inserted in your belly I guess that is what the body is supposed to do!  Duh!  doesn't really matter what kind of football it is I guess. So after the first day of steroids I cannot believe the difference! The swelling in my legs have gone down tremendously and the pain level I was experiencing has almost disappeared which they tell me may or may not be related. So as I sit here now I am finishing up my second dose of steroids and am awaiting the morning visit with all of the doctors and team members (about 14 crowd into the room everyday ) to come in and tell me when I can go "home". Of course home is the extended stay hotel here in aurora not Montana .............BREAKING NEWS Drs. just said I may be getting out this afternoon depending on my blood sugar level!!! 

Well that is enough for now I guess,  than you everyone so much for all the emails, texts, cards, phone calls and everything . I cant tell you how much it helps when you are this far away from your real life.  here are a few more pictures , I have intentionally left the real gory ones out but I know there are a few floating around out there.   talk to you all soon   Jeff

prayers are answered.....in their own time

So we arrived home late Sun evening 12th tired, disappointed ,and very hungry. As Alphie was sill in daycare we ate at a great Italian rest.  It was Monday at bout 2pm I got the next call.  Another organ was going to be available, but with a caveat.  They were worried about the pressure in my heart and needed me there asap to install a large line down my neck to measure those pressures.     

Arrived in plenty of time, but got bumped by another emergency.  We wouldn't know if the pressures were ok until they were able to perform this procedure.  It was over by about 9:00 PM that night and the heart was good.  Now it became another waiting game on that liver.   I was admitted to the hospital straight way and about 2:00 AM everything was a go.  I was prepped for surgery and rolled into the operating at 5:00 AM.  It was the only warm room in the hospital and filled with gadgets, lazers and meters and high intensity light bulbs....more than I ever imagined possible.

The trio team of anesthesiologists began their magic right away.  They told me goodnight and when I woke up I would have a new liver.  I never met the surgeons.   I never even saw them.  Mom had to wait an   hour to see me in recovery.  The surgeon told her the liver was a really good one and the surgery had gone as smooth as glass.  She was then allowed to see me for ten minutes.

They sent Mom to my semi-private room to await my coming up.  There was no need for me to go to ICU.  My roomate, who I had met the night before, was an interesting fellow who  had been through this in January.  We were up all night as he gave me sage advice and tried to settle my nerves.  The day was spent in the wonderful magic of medical making.  Mom and I spent the day hoping and praying we hadn' t been dreaming all night  and made unexpected and unintelligible crazy phone calls to everyone and people I  had forgotten to tell.  This was also followed up with many facebook posts and e-mails until finally we finally passed out, only to wake up in the wee hours for me to explain the nuances of baseball to Mom.

Earlier that afternoon, Mom went to get some ice a few doors  away.  When she came back, there was no  Jeff, no bed nor a trace of him anywhere.  Finally his roommate told her I was moved next door.  In her state of mind, it seemed like more dream material.  Now I have a  large private room with a couch Mom can roost on.

It is now Wed. at 11:00Pm here and I guess my first full day of a miracle new life in my body.  There is no time for messing around.  It is a regular book camp here with the day filled with spending time in the chair, my first walk and many pushes of the pain button as the reality of taking the edge off the pain set it.

Hurry up and wait!

Saturday night at 11pm was the moment I had been waiting for since becoming listed some six years ago now. All the appointments, prescriptions, traveling to Doctors, days spent lying in bed or on the couch because that was as far as I could make it all flashed before my eyes and it suddenly all felt worth it as Mom and I scrambled about trying to think of all the things we may need the next couple of days. Add to this the need to find Alfie a temp home while we were gone all in the middle of the night. The caller said to be there by midnight, that the organ was on its way and by morning I could be recovering from surgery.  Arriving at the hospital we discovered that things were not moving quite that rapidly and that the transplant floor was completely full so they set us up in an examination office that had been converted into a makeshift spare room which was held at precisely 34 degrees to assumably kill off any viruses :) We nearly froze to death and mom found comfort in pushing two chairs together to try to use as a bed.
It was an incredibly long day that finally culminated in getting checked into a room at approx 4pm and within the hour I had been whisked down to the operating prep area and fitted with an IV waiting for the surgeon to arrive. Almost 17 hours had passed and Mom and I were both exhausted beyond belief from lack of sleep. Dr. Zimmerman whisked open the curtains and announced that he had seen the organ and it looked "fatty" to  him. He was running one more pathological test to be certain and...... unfortunately, his instincts were right and the liver could not be used. Although mentally prepared for this possibility I really could not believe that the drama of the last 17 hours or 6 years really, had suddenly come to an abrupt, unbelievable end in the last 30 seconds. I was at my wits end,tired, disappointed, and feeling that I could not go through it again. We left the hospital feeling numb and as if we had been in some weird time machine. Thank you so much for all the good thoughts and prayers that have lifted me up through the night. Woke up this morning to a beautiful sunny blue sky and  the strength to keep on fighting. Although now realizing it is not really a fight but more of a surrender to faith for things to work out as they should even though it isn't my way and I don't understand it.  Jeff

Up to date as of Today Friday Aug 12

Well a lot has happened to get to this point but rather than go back to day one i will just update you with what I know today. Mom and I arrived here in Aurora and are staying at the Extended Stay Deluxe room 131 located at 14095 E Evans Ave. ,Aurora , Co. 80014  (303)337-7000.
It is a very nice place with full kitchen so it is more like a small appt than a hotel room. It is pet friendly so Moms puppy "Alfie" has had fun exploring every corner of the entire facility!
After arriving Friday night I found myself already in the hospital with a cellulitis infection on my right thigh Sat and stayed hospitalized until Weds the 10th.
This gave the transplant team a chance to adjust all of my medications as well as drain my right lung again of 2.0 liters of fluid. This has become a weekly occurance.   The alternative is that I cannot catch my breath or bend over so given that the needle isnt that bad.
The score that is used to determine where on "the list" one is in terms of transplant is calle a "MELD" score. Model end stage liver disease. This score is determined by how well the liver is functioning. So the idea being that those with the most need will be at the top of the list and receive transplants first. As of Tues the Dr told me that I was number three on the list (not just the hospital, but the entire region) and that there were two transplantes being done at my hospital that day!!!! 
She did caution me that this will be the toughest several weeks because there are often times many false alarms with organs being undesirable for one reason or another.
So, the bottom line is that the transplant could be as soon as today and maybe several weeks.
I have found it increasingly difficult to keep everyone up to date so I will be using this blog to do so. Pass it along in case I forget someone. Thank you all for the prayers, love , and lifting me up to get this far!   Update you soon!  JB