Daily Status - Memphis
Monday, March 24, 2008, evening(T1 - 1 yr, 6 months)
Scott’s birthday is tomorrow, he will turn 44, and get to spend it being in a car. We usually like long car trips, seeing the country, etc. But it will very nerve racking being paranoid about his health - and hoping he does not go unstable along the way. As soon as we get there on Thursday, they will admit him. I am not sure exactly why - but I don’t care too much, I am just glad that they are being proactive and going to take care of him. I am hoping we will get there early enough on Wednesday to enjoy a nice Memphis style BBQ dinner together.
We have probably done the hardest part of the trip already. We had to say goodbye to the girls for now. I miss them already. We leaving early in the morning and I don’t know when I can update the website again. So be patient if you have not seen anything for a while. Wish us luck.
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Wednesday, March 26, morning
Be sure to read the comments even if you don’t leave one. I can leave the comments from my sidekick (cellphone with internet/email capabilities) but not the status, since it is not “secure” enough to sign in. That may be the only way to communicate with the website when I am in the hospital with him, such as the day of surgery, so check it too.
We are in the town of Cookeville, TN. Apparently we are only about 4 or 5 hours from Memphis. We had fun last night. It is extremely rare for us to travel without the girls (last time was four years ago). For his birthday we got a room with a hot tub. It was nice to relax after a long day driving. Scott has retained a LOT of fluid in his abdomen (maybe extra twenty pounds worth) in the past few weeks and it felt good to let the water support it and take away the pain from weight/gravity.
But we had one scare. He got real chilled and started to shiver. That usually only happens when his fever is climbing rapidly. But we stopped it by warming him up, or it stopped itself. Either way it did not get high enough to be considered a “fever” by medical professionals. But we are nervous so we are getting on the road this morning sooner rather than later.
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Wednesday evening,
We are in Memphis. Since this is Scott’s last night before incarceration (they may let him out once tests are done, we don’t know, we are assuming not for now), we made the best of it by having a nice Memphis style dinner. We went to a famous BBQ place downtown called Rendevous. Most of the patrons were from out of town, but it was very good none the less with wonderful atmosphere. Then we went down to the River walk and walked a short way along the Mississippi River. It was fairly warm for early spring. There was still a cool breeze, but there were many folks, even many with kids, out walking. The Mississippi is one of my favorite rivers so I enjoyed it a lot. Longer update tomorrow when we know more.
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Thursday, March 27 2008, evening. (T1 + 1 yr, 6 months) (T2 - very soon!)
Scott is now incarcerated at the Methodist University Hospital. The plan is to get him listed by tomorrow so that a liver becomes available over the weekend he could get it.
He has had a LOT of blood taken from here today. If he was not anemic before, he is now! He had a pulmonary test today (lung test) which requires him to breath a certain times in certain ways - which was difficult since he could not hear! He was their first deaf patient. But we muddled through, and his lungs are fine.
He has a couple of tests tomorrow. They are mostly a formality at this point. Being listed is a mixed blessing. It could save his life, but it could also kill him. This time tomorrow I could be very nervous.
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Friday, March 28 afternoon,
Quick update. Scott is listed. His current MELD score is now 37. (it only goes up to 40). His to clot ability (stop from bleeding) is horrible. I think he has a bruise that won’t stop bleeding in his arm right now. They are taking a look at that and his liver in ultrasound right now.
They do a lot of transplants here so we will probably get a liver within a few days. (He is, as far as I know, number 1 on the list). As a result of being listed he needs to move rooms, so I need to go pack up his stuff.
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Saturday, March 29, afternoon
He was not listed yesterday as I thought, apparently they did not try to get insurence approval until after everyone at the insurance company had gone home for the weekend. But there is no reason he should not be approved, so they are going to do a retro-active approval on Monday. Anyway, we are officially “GO FOR LAUNCH”. Meaning, he can get the transplant anytime now.
His MELD score yesterday was a 37, and it was only a 30 today. But, by listing him today they can use any blood test results from the past 24 hours, so they used yesterdays. The reason his numbers are so much better today is the kidney numbers and blood clotting numbers were bad enough to made the doctors nervous, and they felt they had to improve their function even if it meant it lowered his MELD score. (They gave him a some plasma, fresh blood, vitamin K, etc). He is feeling better (his bilirubin is still very high), but still very tired. It is also better for the surgery to have improved kidney function and clotting factors. Hopefully, the insurance issue won’t come back to bite all of us. If he was going to get listed at a 30, they would have sent him back to the hotel with me to wait, but at a 37, I think they will keep him here.
We finally talked with the surgeon. He inspires a LOT more confidence than the doctors at Hopkins (especially since they decided he was toxic and would not touch him). He does not consider Scott very high risk since he has is mobile, young, otherwise healthy, etc. He thinks the extra risk of infection that Scott has will go away with the transplant. They also use a lot less steroids post-transplants than Hopkins, so he recovery should be much better as well. (less immune issues, less chance of a re-occurrence of the avascular necrosis, no temporary diabetes, etc. It has given me hope for a normal life this summer that I have not had in a long time.
The new room they gave him is actually a suite. One regular hospital room, and a second room that has a hide-a-bed couch, refrigerator, second tv, shower, etc. It is for family members to stay with their loved ones (and help in care). So I stayed here last night, and I will stay here until the transplant. But then he will go to ICU and I will have to move back to the hotel for a while. Once he is stable, and can go to regular room, he will get a suite again and I can stay with him again. They like me to stay since I act as translator.
The nurses here are very nice and very good and finding the time when Scott is in his deepest phase of sleep to come in and wake him up for something (medication, procedure, blood draw, etc) . We won’t see one for many hours, he falls asleep - guaranteed they will show up soon. 
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Monday, March 31,11 AM CDT
(T1+ 1 year, (almost) 7 months) (T2 - about 6 hours)
About five minutes ago we got the word from the team here that A LIVER IS AVAILABLE, and I should start getting ready for surgery. (They’re always waking me up for something, but this time it was OK with me). I don’t know yet when they’ll be starting surgery, but I’m hoping to take a quick shower (my last for a while). So the feelings are now 51% excitement, and only 49% terror. Actually, the team here inspires a lot of confidence, and it’s more like 90% excitement. Stay tuned for more updates here, and KEEP SMILING!
(That was Scott updating!)
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Monday, about 2 pm CDT
Martha here.
The surgery will not be until sometime this evening. But it is suppose to be “great” liver. Please pray /wish/hope for the good skills of the surgeon. He inspires a lot of confidence, which we need right now! I am sitting here looking at my lunch - and can’t seem to do eat it. I think I am more upset than I realized.
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Monday, evening about9pm (T2 - 0:0:0) TAKE OFF!
The surgery has started!!! They came for him about 7:45. It should be LONG night. My sister and father-in-law are coming in tonight - after the storms have cleared. I was more upset than I thought I would be. I found out the donor is here in this hospital (so they don’t have to transport the liver through the storms we are having.)
I have to vacate the hospital room that has been “home” for the past few days.
This was taken earlier today. Keep in mind, Scott normally has similar skin color to me.
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Monday night 10pm (T2 +1 hr) for those of you still up.
I got a call from the O.R. First incision was just made. I should get a call every hour on the hour. I am trying to arrange for pictures from the O.R. of the new and old liver. See what happens.
I took stuff to my car. When I get there it starts POURING. Lots of impressive lighting and thunder. I am very wet. At least I had enough sense to put on my rain jacket, otherwise I would be soaked. My sister and father-in-laws flight delayed as a result.
Update after next call.
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Monday, 11 pm
Call from O.R. “progressing well”. Camera thing may not work.
Weather - tornado warning (tornado’s spotted) near airport. No flights for a while.
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Tuesday, 1 April - Midnight - no April Fools Jokes about survival please.
Call from O.R. “Working and progressing” “About halfway”
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Tuesday - 1 am
Call from O.R. “Working and progressing” (with a southern accent)
Call from Mary - they are finally allowed to board plane in Atlanta. I am guestimating their ETA as 2:30am. Still raining here though.
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Tuesday, 1:45am
My mind was starting to go through all the bad “what if…” when one of the two surgeons came up to see me. The new liver is in - they are finishing the last of the work on the connecting the bile ducts then finish and then close - he should be in ICU in about an hour. He said the old liver looked “big, ugly, and green”. The green was from all the bile. Hopefully pathology can take a picture of it for us. Scott has received about 5 units of blood so far. Not surprising since he was anemic going into the surgery. Kidneys are doing fine, so far.
I am breathing a small sigh of relief.
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Tuesday - 2:15 am
Got my picture - note this is the same liver that is on the front page - that Scott got from Marcus 1 1/2 years ago.
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Tuesday - 3am
He is out of surgery - and I am waiting in ICU to see him. Still not sign of the flight from Atlanta. Visiting hours here in ICU are fairly strict. 
I am tired and starting to worry again. (”They were suppose to be here by now, what could have gone wrong?…”)
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Tuesday, 5 am
Sorry have not updated in a while - been busy. Scott is in ICU (this standard procedure) and slowly waking up. He has breathing tube in and does not like it much. So I have been trying to calm him. He seems content to hold my hand - but I am not allowed to sit, and I am very tired. I tried to take a picture for all of you - but they said NO. But so far, everything seems to have gone very well and he is recovering normally.
The airplane finally came in (same time as he got to ICU, of course). But I did managed to go get them and bring them back.
If I don’t update for a while - it is because I am asleep somewhere.
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Tuesday, 1 April 9 am (T2 + 12 hours)
I managed to get a little sleep back at the motel. I just talked to Mary who just saw Scott. He is off the ventilator and is still recovering nicely. (No April Fools!) He was very confused - but then he is on a lot of GOOD DRUGS to keep away the pain. Right now he is sleeping.
Now Mary and I switching places all day - THAT IS AN APRIL FOOLS JOKE!
I appreciate everyone who stayed up through the night with me or got up early to check the website and left me a message. I it has helped knowing I was not alone . It was a long night with the outcome so far much better than I could possibly imagine. (Hopkins had forecast lots of gloom and doom for him - so I am glad it worked out that we had to come here.) It was nice to have this website to distract me and keep in touch with the outside world.
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Tuesday, 1 April 11:15 am
They kicked us out of the ICU. “Visiting hours are over for now”. So we are just “hanging out”.
I found more about the donor. He was a 35 year old man in good health (with a great liver!). He died here at Methodist. The ones I talked to did know how he died, but there were two fatal accidents yesterday - and he may have been one of them. I want to say a little pray for him - and especially his family.
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Tuesday, April 1, 2008, 10pm (T1 + 1 yr, almost 7 months) (T2 + 1 day )
I actually did an update earlier and it got lost. So I will try to remember what I said. BTW - Scott was able to read all your comments, and it cheered him, until the nurses kicked us out again. Hopefully, tomorrow he will be out of ICU.
We have our first complication. Once again when they put in the arterial-line (a super IV into an artery, verses a regular IV which goes into a vein.). For both Transplants, when they put into the artieral line - they stuck a nerve in his wrist, and damaged it. Both times he has complete numbness in his thumb and 3 1/2 fingers. He has a bad tendency to drop things, and then it is easy for him to hurt himself. Last time as it healed, it was very painful and sensitive, and he had to wear a glove for months. (You can call him Michael Jackson)
He is doing great. He sat up for two hours in a chair this afternoon. His off the IV painkiller and must take a pill now. His blood suger level is very high. This is normal after a transplant, but they seem to be very concerned, so it might be higher than most patients.
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Wednesday, April 2 , 3 pm (T2 + 2 days)
Scott continues improve. He was given a dose of something called Robbitt Thymoglobulin during the surgery and and will be given a second dose tomorrow, to prevent rejection. This is instead of 3 months of steriods (which caused all kinds of problems, such as diabetis, avasucular necrosis, slow healing, serious immune problems, etc). I am very excited about this.
The got him up and walking! (of course, we were not allowed to be there since it was not during the very limited visiting hours.) But I got a picture !
Scott made them take the picture for me with his sidekick since I was not there - and he sent it to me via email. Meanwhile, Steve, Mary, and I went for a walk down to the still flooding Mississippi River. It is apparently up about more than 10 feet over where it usually is. Then we went for a drive to Arkansas! The flooding was worse over there since the ground is lower.
We found this road in Arkansas and I had to take a picture! And safely checking out floods and rivers is lots of fun! Normally all the area in the picture that is covered in water is dry. There were not really permanent structures that were flooded since the area is considered a flood plane. But there was a campground, roads, fields, etc underwater.
I just talked to the surgeon. He will probably be released early next week. (They don’t like to discharge on weekends). But he will not be able to go home for two to three weeks. (Blood clots would be a real danger this soon after surgery - among other problems.) But the hospital owns some apartments nearby they we will hopefully be able to stay in. “Not luxurious” but cheaper than a hotel. Hopefully that will work out.
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Wednesday, 2 April, late evening.
Quick update before I go to bed. Scott is back in a suite, out of ICU, - and I get to sleep in other room. He is tired, sore, weak, - and that is ok. But so far so good.
Steve, Scott’s dad, has to leave tomorrow. I need to take him to airport early in morning so we need to go to bed. But this evening we had a nice visit with Scott with no nurses telling to leave. Steve, Mary, and I went out for BBQ ribs before Steve had to leave. We went to the Rendezvous again. If you are ever in Memphis I recommend it. It is very good with a lot of great atmosphere. Good night.
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Thursday, April 3, (T2 + 3 days)
Today was not a great day for Scott. They gave him some anti-rejection medicine (Rabbitt Thymoglobulim) and it made him feel bad(flu-like symptoms). It even gave him a fever, which they had to panic about and do blood cultures - but it was just from the medicine and went away. So he was tired and grumpy all day.
He took two walks. And sat up in a chair. His digestive system started to working normally (enough said), and he graduated to solid food. But eating was not as easy as he thought, and he ate very little of his dinner. Hopefully tomorrow the food will more appealing. (he needed to stick to things like bread, rice, crackers, etc today)
Steve flew home this morning, and Mary left by Greyhound bus this evening (she won’t get back to Pittsburgh until tomorrow afternoon.) So it is just Scott and I. We know a little more about where we will be staying next week. The transplant team has made reservations for us at nice hotel near here. They apartments they normally house folks like us it are full. I had to ask special for a place with a kitchenette. But no laundry. Looks really nice - hopefully it won’t be more fancy than practical.
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Friday, April 4, 2008
40 years ago today here in Memphis, Dr Martin Luther King, JR was assassinated. There were lots of reporters, media, and politicians in town to talk about Dr King’s legacy. And get their faces on TV. But they had to do it in the rain - it POURED here. The rivers and streams are already at flood stage and this did not help any.
Scott and I are sitting here watching one of my favorite movies - Lord of the Rings together. (Boramir just died)
Today was a busy and boring day all at the same time. Scott received 2 more units of blood. So he went for a walk this morning - and then had to spend the rest day in bed getting the blood. The second unit did not go in very well, and at one point he had to sit in an awkward position to get it keep flowing for over 1/2 an hour. They keep telling him to walk more - then don’t give him the chance. I think when this is over, I will push him to take a third walk.
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Saturday, April 5 morning
Scott just crashed. He was doing ok, I was about to make him make him walk when he started hurting, his hand started cramping, he laid down and feel instantly asleep (as soon as I messaged out the cramp). Out cold.
Remember how he got blood yesterday? His blood count is even lower today. So he is getting two more units. The doctors assured us that he is not bleeding. That he is simply not producing red blood cells yet - and using up what he has. So he will get two more units today. That also might be why he just crashed, he is very anemic.
The pathology on the old liver said that the connection from Scott’s bile duct to Marcus’ bile duct was completely blocked. The bile backed up into the liver - and damaged it.
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Saturday, evening
Sigh, Two steps forward, one step back. Today was not a good day. Not every day can be a good day.
Scott got two units of blood this afternoon, while I spent the day doing laundry. But at least that is done for now.
But this evening he is running a fever. It is just barely into the “panic” level (101.5) - but it is there. He is calm about it, but I am not going to sleep well. They are getting ready to do blood cultures and urine analysis. Sigh.
For those of you who know about Lord of the Rings - yes, we watched the second part, “The Two Towers”. (I had forgotten how much I loved those movies!)
BTW - Memphis won it’s basketball game. So now it will compete for the final championship. Oh, boy…
Hopefully, tomorrow will be better.
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Sunday, April 6, evening (T2 + 6 days)
Another not good day. They pulled out his central line (super IV) thinking that was the source of the fever, but the fever came back strong as ever this evening. Even Tylenol did not being it down. We are both a little discouraged.
Although his blood count was still low, they decided not to give him more blood. They don’t do much on Sunday, so it was a pretty quiet day. We had tried to get him washed up - but he got too tired to finish the job.
Now we are watching the final part of The Lord of the Rings Trilogy. It is a great, much needed, distraction. It is strange that I keep seeing Frodo’s journey into Mordor, as our journey to get Scott’s health better. I just wish I had a better TV and sound system see and hear this. ( I am going to watch this again when we get home)
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Monday, April 7, 5 PM CDT (T2+6 days, 19 hours)
Scott updating: It’s amazing to me to realize that it was less than one week ago that I went into surgery. The recovery since then has been terrific. We tend to notice the immediate aches and pains which remain, though overall progress has been stunning. When we mention fever, bear in mind that while this is usually a passing condition which will get better soon, Martha and I see mainly the small potential for a catastrophic effect. We remember (as do many of you who were following at the time) just how close one round of fever came to ending this trip permanently. So while we might dwell on it at the time, it usually isn’t that bad.
This morning as I woke up and turned on the TV for some company, it came on to the Weather Channel, which is sometimes nice to remind me that there’s a world out there still. Some may remember my analogy through the first transplant of taking a bus trip to Denver; we might find good roads, we might find potholes or detours, but we WILL eventually end up in Denver. The weather channel reminded me of that analogy this morning. We’re still on that trip! Lots of detours, more pit stops than you could count, the septic system overflowed once or twice, and we’re about 400 miles off course, but we WILL still get there! BTW, this morning’s forecast called for some residual icy, slippery conditions in the Denver area, but getting better. We’ve got time.
Every day I do feel better overall, and momentarily worse. I try to push myself to do the things that I know I must do to recover on a physical or emotional level. Today I finally hauled my butt out of bed and washed my hair (after complaining about missing this for 3-4 days). It hurt to stand for ten minutes and try to rinse bent over a small sink, but the improvement right after was tremendous - it was as if my soul had been held behind an ounce of gunk, and I’m me again.. That inspired me to take a longer walk than ever yet post-surgery. I’d like to take an even longer walk tonight, if things work out. I think the plans for us are probably to relocate tomorrow if the evening goes quietly. There is apparently a set of apartment-type rooms nearby where out of town patients go for a transitional recovery before going home (a sort-of transplant half-way house). Another step forward, but as usual there are lurking risks.
For now, let’s all smile!
(signing off from the land of blue - Memphis basketball fans EVERYWHERE. This town will definitely sing the blues tomorrow, either from disappointment or post-celebration hangovers…)
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Tuesday, April 8, afternoon (T2 + 1 week)
They think they found the source of the fever - his wound was infected. They have opened it up to heal (only in a small spot). (Because of all of the infections he has had - I was starting to imagine much worse things. So I am relieved. ). The good news is, (unlike Hopkins) - they think a shower as a healthy thing. Keep it clean. At Hopkins it was MONTHS before he was allowed a shower. Methodist doctors want him to take a shower as soon as possible.
They are going to put him on antibiotics - and if all goes well, release him on Friday. Where we are staying post-hospital may change (an outpatient room instead of a hotel). I will know more shortly.
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Wednesday, April 9, evening (T2 + 9 days)
No sign of the fever today! I told the nurse assistant who measures his vital signs which includes temperature, if he runs a temperature, to gently hit Scott! But it was not necessary. We are here until at least Friday, to make sure they have the infection under control.
I needed a break, so I went to Mississippi! I used a Walmart run as an excuse for the change of scenery. The I stopped at another famous Memphis restaurant I had seen featured on the Food Network called Interstate BBQ. I got BBQ spaghetti. Pasta with pulled pork bbq on it instead of marinara sauce. Yummy.
I got to look at one of the rooms they let post-hospital patients stay in. Unfortunately, it is like a small hotel room with two twin beds, a small bathroom, a refrigerator, and a TV. Not fun for two weeks. Not easy to get to car and escape. Fortunately, we have an option of staying in a nearby hotel. A little less prison like. The hospital rooms are actually designed for cancer patients who are under going treatments that do not warrant being admitted, but if the patients are from out of town, do not allow patient to go home.
Sorry this is a boring update - but boring is a GOOD THING!!! Means nothing is going wrong!!
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Thursday, April 10, 2008, late evening
Another mostly boring day. As long as there no fevers - we are going to get to leave the hospital and go to a hotel where I get to sleep in a REAL bed instead of the couch. My back has been looking forward that!
But this evening just as we are getting ready for bed - he checked his temperature - and it was up. The antibiotic he is on is not taking care of the infection. Sigh.
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Friday, April 11, 2008 (T2 +12 days)
Despite a fever, Scott is being released from hospital! We will be staying nearby in the Artisian Hotel for at least the next few weeks.
The doctor is very pleased with how well he is doing. His bilirubin is down to the lowest it has been in a long time and his liver function is increasing (good thing). His kidneys are not great, but not too bad.
Gotta go pack - will update again later!
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Friday evening,
We are at the Artisian Hotel!! We are thinking of it as a halfway house. Unfortunately, he is still running a fever, It is shade below the level where I have to call, but I doubt it will stay there. I am still not sure why they sent us home. I only give it a 50/50 shot that he won’t be in the hospital by end of weekend.
My legs are killing me from lack of sleep all week and sleeping on a couch.
It will be interesting living in a hotel with no real way to cook for weeks. Since his blood sugar is up they want him to eat a healthy diet - yeah right!
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Saturday, April 12 (T2 + 12 days)
We are still in the hotel. Not exciting - not much to do. Scott can’t spend time outside yet, but I got to go out and run some errands . The hotel is older and not as well maintained as I thought. Little things like the shower rod falling off the wall. Normally that would not matter - but Scott needs that when he takes a shower (he’s looking forward to fixing it himself). There is only one chair in the room, so I went to Home Depot and bought a cheap chair I can leave here. The microwave in the room had broken and we haven’t decided yet whether it’s worth it to s to replace it (we do have access to one near the lobby). Part of the carpet in the hallway is wet and moldy. Things like that. But they are willing to work with us on some stuff, and the price is excellent for the long stay.
We are not the only transplant patients here. I have met at least one other patient and caregiver couple here. But he only speaks broken English, and I don’t think she speaks any. So communication is an issue.
Scott’s elevated temperature still has not gone away, but seems stable. But I was told to call in if it got to be 101.5 by the mouth thermometer they gave us. They don’t trust our ear thermometer even though we get consistent results. By our calculations thermometer reads about .4 degrees low - and it has not reached the magic number of 101.5, but it has been above 101 about 75% of the time. But since they sent him home with that temperature - they don’t want to be bothered if it is not really high.
I’m still very nervous about the temperature, but it is nice to have him to myself for now. He got around for a couple of walks outside the room today (maybe 100 yards each time), and feels better, but still sore.
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Monday, April 14 evening (T2 + 2 weeks!)
Things are going slow but good. Scott’s average temperature is dropping. It is not normal yet, but it is not as scary. He is getting around more, and even managed to sit up long enough to go out to eat last night! He no longer looks like a patient! He gets up takes a shower and puts real clothes on! Then he has to take a nap because the shower wore him out - but that is ok.
Unfortunately, he cannot take long trips in the car yet (more than 15 minutes). He feels every pot hole, quick break, or sharp turn and it hurts and wears him out. So I appreciate everyone ’s encouragement to move to another hotel (the transplant institute is helping to pay for this one), but for now this one has the distinct advantage being close to the hospital and even closer to the lab where he gets blood work. (It is about 100 feet from the back of the hotel, I can look out the window and see if the parking lot is crowded) - but we cannot walk there because there is no way to walk out the back door from here. Since we have to be there before 7am, twice a week for now, being close is a good thing.
Tomorrow is our first clinic appointment and we find out if how he is doing.
BTW - tomorrow is also tax day! We did our taxes, did you do yours?
Also - I want to give a big Happy Anniversary (in advance - they got married on Tax Day) to Steve and Ann (my in-laws) !!! Congratulations!!
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Tuesday, April 15 (Tax Day!) (T2+2 weeks, 1 day)
Clinic appointment. Scott is doing ok. His kidneys are not great and they are very careful to balance his anti rejection medicine (which is hard on kidneys) against his kidney function. Scott will be ok if his kidneys stay where they are - but will need to be careful not to do anything to make them worse. He is also just above the level where he needs another blood transfusion - but we will deal with that if and when it gets worse. Lastly, his liver numbers continue to improve!! Yes, Mother he is looking less yellow/gray. More pink. His bilirubin is slightly higher than last Friday - and they expected it to go down more. So they are going to watch it. He is getting blood work twice a week - so I am sure they will catch anything that needs to be caught.
Some more good news, his blood sugar is doing better. So maybe there is hope he will not be diabetic for the rest of his life. But for now we are keeping an eye on it and giving him insulin if necessary. Also, his clotting factor and platelets are better than they have been in over a year!!
Scott walked a LONG way from the parking lot to the clinic today. He got tired but he did great
I heard some interesting gossip today. There was a liver recipient who got a liver in the past few days whose liver did not work. The doctors decided to pull out the bad liver - put him on life support - and give him the next liver that becomes available. But as they were trying to pull out the non-working liver - he died. But they still put him on life support so that he could donate his other organs! (needless to say - nobody wants the liver). I found out because they had to clear out the ICU of other visitors so that his family could say good bye. I think that Methodist only lost one patient in the past year - this would make number two. Sad results can and do occur in the world of extreme medicine, and we’re just thankful that even with all our challenges we have been able to get through. Our thoughts go out to the family of this unfortunate patient, but with hopes that others could be helped along the way.
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Wednesday, April 16 (T2+2 weeks, 2 days)
Scott updating: It’s been kind of a mixed day, and we seem to be settling into a bit of a routine and possibly moving toward solving some problems. If you think of this recovery as “big things” and “little things”, then the big things are pretty well under control. Unfortunately, there are so many little things, and that’s where all the pain comes from right now, so that I often feel miserable for half the day or more. The most painful part at the moment is a fluid accumulation throughout my whole lower abdomen. Most people who have seen me over the past year recall that I’ve had this for a long time, but now it is super high pressure, and very painful. The doctor just started me on a new diuretic this afternoon, so I really hope that will relieve the pressure. When that pressure backs off, I think I’ll be able to walk more, and get back to feeling stronger. As it is, I maintain my strength at best. Most of the other little things are stuff that I’m just going to have to put up with (because they don’t know how to fix them), but they’re quite annoying on a continuous basis. That may sound glum, but if this new med does the trick, things will get much better.
The weather today was finally terrific; high temp around 75, and sunny. Fortunately this hotel room has windows that open wide to let in lots of fresh air. We went to Outback for dinner this evening, and it was quite good. By planning around nap times, we were both able to relax and have a good time. Tomorrow we have a blood test in the morning, and apparently we’re moving to a different hotel in the afternoon. I just go where they tell me… Keep smiling
THURSDAY MORNING UPDATE: DIURETIC IS WORKING BIGTIME! THE MISSISSIPPI AIN’T THE ONLY THING FLOODING!
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Thursday, April 17, morning
Once again I must apologize to “Arlette, Roak, Jo, and Autumn”. Their comment (#167) was once again marked as spam! I can only guess why the spam filter does not like them (the other entries marked as spam deserve to be. Folks I don’t know wanting talk about “fetishes” - you do NOT want to know the details). My guess is that is because they are in Canada. I will try to remember to check the spam list periodically to see if there is any other real comments hiding in there.
I just found out that a friend,Tim, we met here in Memphis is FINALLY getting his liver transplant today. His surgery should start very soon, probably within the hour. He was in the hospital across the hall from the entire time Scott was incarcerated - but he was waiting. Unfortunately it was not an easy time for him. He was frequently “unstable” (which was why he was in the hospital) - and lately he has been in ICU. But hopefully all will go well and a new liver will take care most of his problems. I made friends with his caregiver and sister, Sheila. I am hoping to go the hospital later and sit with her through this long day. She had had to go home (about 3 hours from here) to take care of some things when she got the call - and probably will not be back in time to see him before the surgery.
We are moving out of town to the Extended Stay America later today. Which will have more of a kitchen, which will be nice. Will update this evening, hopefully.
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Friday, April 18, evening. (T2 - 2 weeks, 4 days)
First, yes we moved, and we have an address! If you want it or need it - drop me an email or even leave me a comment - and I will send it to you off line!
There are things I really like about this hotel. It is better maintained, and brighter. It has a kitchen! Small, but usable. For the first time since the transplant, Scott was able to keep control of his salt intake. If felt good to stay in, eat dinner, and clean the kitchen! It also has plenty of outlets. The bad news is - we are almost a half hour from the hospital and the neighborhood is typical suburbia. Not as interesting and unique as downtown Memphis. I can almost believe I am back in Columbia! Chain restaurants, chain stores. At the Artisian, there was gorgeous 100 yr old plus church within sight of our window. We stopped by yesterday and had fun taking pictures! (one of Scott’s hobbies)
Big question - how is Scott doing? On the things that matter, his liver is doing great! Bilirubin is only a little above normal. Kidneys are improving. But the ascities (fluid buildup in abdomen) is worse and very painful. I tried to update this website this morning, when the doctors decided we should come in and see them. Since his kidneys are doing better, they were able to increase the diuretics. Hopefully that will help. But the ascites has really cramped his style. He cannot walk very far, and is taking lots of pain pills. With any luck the diuretics will work this weekend to bring down the fluid, and improve his mobility. When he can move easier, he’ll recover some stamina, and be able to move easier, and …. We just need to find the right “magic bullet” to start the process.
We went back to the famous Interstate BBQ for lunch! Scott and I have seen it featured on the Food Network several times - and he enjoyed seeing in the flesh. If you didn’t know better - you would think it was a cheap dive! It is in a older building in sparsely used manufacturing area, with busted up parking lot, and a funky bathroom. I got the BBQ spaghetti again (very spicy) but Scott got sliced beef sandwich - and it was very tasty!
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Sunday, April 20, evening. (T2 - 2 weeks, 6 days) HAPPY BIRTHDAY ERIN!!
Scott updating: Things continue settling in here, and we’ve pretty well learned the neighborhood basics by now. The weather Saturday and Sunday was fantastic (sunny, low 80’s), so I tried to get out and exercise as much as possible. Keep in mind, though, that at this point anything over about 100 yards is still considered substantial, and even that takes about 20 minutes, followed by a 10 minute rest. Running a few errands on Saturday filled the bill nicely; shop for a bit, sit down while we drive to the next store, repeat. Today we tried to go for a walk by the river, but parking was impossible, and we ended up driving a long way to a not-so-great trail in the woods. This was my first encounter with steep terrain and uneven dirt, and I did pretty well, but in the end the mosquitoes won the day. We’re looking for other options for this week.
Nancy, I’m sorry to disappoint you (especially when you’ve been such a faithful commenter), but we didn’t get a chance to go inside the church the other day. Any pictures I have show decorative stonework details, and little or no evidence of stained glass. Since we’re going back for blood work again tomorrow, maybe we’ll try to get a peek inside. The sanctuary is apparently quite beautiful, but we might be there too early for it to be open. By the way, the church is called Idlewild Presbyterian. As with so many buildings in Memphis, the main impressive structure appears to be a fairly recent (<50 years) reproduction of a classic European design, but I could be wrong. I still think that it’s beautiful.
That’ll do it for now. Keep smiling, and I’ll do the same.
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Tuesday, April 22, evening (T2 + 3 weeks, 1 day)
I did it!! I surprised Scott BIG TIME!!!
The girls have come for a visit!!!!
The Methodist Foundation, a charity group that works with transplant patients arranged for them to visit. Actually, the president of the travel agency the Foundation uses, used her personal frequent flier miles so the girls could see their Dad. Somehow we managed to arrange all of this, including arranging for them to fly as “unaccompanied minors” - without Scott knowing it! (One small advantage to him being deaf). I told him I was “running errands” this evening while I went to go get them. He was totally floored when they walked in!!
They have no school this Thursday so they are missing Wednesday and Friday - and going return to Maryland on Sunday. In the meantime, I am going to show them as much of Memphis as I can.
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Wednesday, April 23, evening.
After a fun morning shopping with the kids, and then a much needed nap, we went this afternoon to see the Mississippi. Unfortunately, the wonderful parking lot near the water with wonderful walking path right next to the water is closed for the next month. Apparently there are events every weekend through out the month of May held there, and in preparation they are using the parking lot to set up tents etc. But we did find a place to park above the river and take a few pictures. You will notice we are well above the level of the water.
That bridge behind them is unofficially referred to as Dolly Parton’s twins.
Then we went to Rendezvous for dinner. It is located in a back alley in what looks like an industrial building. But it is good - and FAST! Not much on the menu besides ribs and chopped BBQ, which is already cooked. So once you are seated, you have your food in about 10 minutes. 
We finally wised up and shared orders. We each had enough to eat - and no leftovers.
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Saturday, April 26, evening
As of today, we have been in Memphis one month.
Yesterday, we had a clinic appointment. The worse part was we waited HOURS. The girls were in the waiting room waiting for us - and it ended up wasting most of the day. But his blood test number for his liver are good. But his kidneys are getting worse due to the medications he is on so they are “tweaking” them, trying to find the right balance between his kidneys and medications. They may want us to stick around so they can continue to tweak. Hope not. The other thing, is part of his wound was not healing very well, and they had to open it up more and clean it out. Hopefully that will not keep us here either. If all goes well they may let us leave after the next Friday’s clinic appointment.
On Thursday, Scott went before the board of directors for the Methodist University Hospital and gave a small speech about his “transplant experience” . They picked him because he is here, has a unique story, and he is good speaker, despite his deafness. Then we got treated to a really nice lunch in a fancy restaurant that is not normally in our budget. It was a buffet and I thought the food was wonderful (lots of good seafood and salad!) but the girls barely found anything to eat since there was no chicken nuggets or burgers on the buffet line.
Today we played tourist! The Methodist foundation pulled a few strings and got free tickets to Graceland! Not something I would normally do since I am not a big Elvis fan and it was very expensive. But our contact in the Methodist foundation thought it was horrible that we were in Memphis and not planning on seeing Graceland. So he arranged for Graceland to set aside some tickets for us and since the tickets were free we went found out how Elvis Presley lived.
He died in the late 70’s on my 14th birthday, and the house and his stage costumes were VERY 70’s era. Dark wood paneling, shag carpeting (even on ceiling in one room), 70’s colors, mirrored ceilings, and polyester jumpsuits. It was interesting to try to explain that having three TV’s in one room so he could watch the news on all three networks at the same time was complete decadence in those days since TV’s were a big expense. It was also interesting to note, that by those standards the house was very big, but it is not very big by todays standards. There are many folks in Columbia with houses bigger than his. O.K. his grounds and the other buildings make it something not usually found in Columbia though. Scott joked about leaving a percocet pill as a tribute to the King on his grave stone, but we figured the other fans, and the Graceland staff would beat him up. Scott was absolute exhausted afterwards (he needed that percocet!) and I was a bit nervous he had over done it, but he seems to have recovered.
Check back tomorrow - I am hoping to post pictures.
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Wednesday, April 30, morning
Scott updating: As you’ve guessed, no news is good news. We’ve been keeping busy with exercising as much as possible, and getting stronger every day. Sunday we spent all day getting the girls dropped off at the airport and getting home. It was raining, so we didn’t do much else that day. Monday was blood test, an meeting in the afternoon, and more walking around for exercise.
Yesterday we went to a nature center which is located only a few miles from here. It is really nicely set up, with several new buildings, lots of trails, and great displays. It is geared mostly toward school groups and scouting trips, but is open to the public most times. Judging by the map, and the few distances that are marked, I think I walked something over a mile, on a combination of paved, smooth, and rough trails; just what I needed. The weather could not have been better, not too hot or too cool, with lots of sunshine and plenty of shade. Along the way we saw many Canada Geese, with the babies just reaching the walking/ swimming phase. I also learned that: (cute little goslings) + sunshine + Martha = (absolute giddiness) It was funny to see how she just melted whenever we saw another set of those cute fuzzy yellow critters. We took a fair number of pictures, and may post some on the site. It’s a bit pricey for a short visit, but we might go back just because the trails are exactly what I need. It’s also so much more peaceful than the mall or Target. As Martha pointed out, here practically on the eve of Beltaine, the place was just bursting with spring energy.
By the way, I’ve also included a picture of the “daily dose” of pills that I’m taking right now. 35 pills 
seems like a lot, until you realize that last week was considerably more than that!
That’s all for now. Let’s all keep smiling!
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Thursday, May 1, evening (T2 + 1 MONTH)
Quick update, but I gotta brag: Tis morning after my blood test we needed to kill some time, and went for a walk in the local mall, which was just opening, and had few customers yet. After walking quite a distance, past all stores on the first floor, I got an idea that I could try to climb the stairs. This is something I haven’t done hardly at all since the surgery, and always with extreme difficulty. The first few steps felt good, so I kept going. Before I knew it, I was at the top of two flights of stairs, having climbed most of them without even using the railing (relying on my terrible sense of balance). At the top, I turned around and came back down (holding on for dear life - much more difficult). The point is, I did it, and using both legs as well. I know that practically any four year old could run up and down those stairs, but it was still such an accomplishment. I’m sure the store owners must have thought we were crazy with high-fives for something so simple, but I didn’t care. Then I repeated the trick later this evening at the hotel. That’s how I’m gonna get better.
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Friday, May 2, morning (T2 + 1 MONTH, 1 day)
WE’RE OUTTA HERE!!! As of a few minutes ago, the doctors have released us to travel back to Maryland. Pack up today, leave tomorrow morning, and get home probably Monday or Tuesday. SEE YOU SOON!
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Saturday, May 3, evening
We have left Memphis. We drove to Nashville and headed north into Kentucky. We were going to go a little further today - but today is the Kentucky Derby - and if we headed any closer to Louisville - we would not be able to find a hotel room, supposedly. So we stopped in the small down of Cave City. (Tomorrow we are going to make a small detour to Mamouth Cave National Park for very short tour!)
This town is mostly some hotels for folks on their way to somewhere else or visiting the caves in the area. Not much in the way of resturants. But it has a Cracker Barrel. So we went there.
“It must be rural Kentucky, if the Cracker Barrel has a long wait because it is prom night”
I have no idea how big the local high school is - but most of its seniors must have been at the Cracker Barrel all dressed up!!! But of course, some of the guys, even with their rented tuxes, still had their baseball caps on! For many of these kids - this is it. Not many will be going on to college, so they will be joining the work force and getting married soon. And how many of the girls will be having kids 9 months from now? (I wish I could have handed out condoms and told the girls, if you won’t wait - then at least make sure he uses a condom.)
According to the waitress, many of them left no tip at all.
Tomorrow we will continue to head north and east and be home in few days (we are taking our time getting home so that we can take lots of stretching breaks).
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May 5, 2008 evening
Home again, home again, jigitty jig.
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May 11, 2008, Mother’s Day, (T1 + 1 yr, 8 months) (T2 + 1 month, 10 days or 5 1/2 weeks)
Sorry, I have not updated, but it has been has been a busy week. Scott is doing pretty good, but still has some pain enough that he needs one a pain killer every a day or two - and that means he can’t drive yet. But he has been working from home some this past week - which has been great for his self esteem. Unfortunately, I think we need to go see a doctor about his wound, it does not seem to be healing right and may have a slight infection - nothing to worry about, but needs to be taken care of. His blood test results from last week were a little - off. We have tweaked his medication and hopefully that will take care of the problem. But due to the pain and still healing, he had as not had much energy as he would like to get everything done he wants to do.
As I said, busy week. This is the time of year to finish up extra curricular activities. Shannon has a her dance recital this weekend (both Friday and Saturday) and had long practices all week. Which meant little time for homework, - and what time there was was devoted to readjusting to having mom and dad again - and moving back home. Putting on makeup for ‘dress rehearsals’, and doing hair, and running to the store for the many little things she needed at the last minute. (”mom - I know you just left Walmart - but I need to bring two big bottles of soda for them to sell at intermission”, “mom, can you bring me some dinner”, “I need to be picked up now”, “I need to have my hair up in a bun for the second dance - but my hair down for the first dance”.) Erin had her Band concert on Thursday as well as a field trip to Philadelphia. (Scott went to both the dance recital and the Band concert - even though he could not hear! He is a good Dad! He said the most of the dances looked like very strange when you cannot hear the music - kind of like “a group epileptic fit”) We have not had a dinner together as a family yet!! Even though it is Mother’s Day - I may make dinner anyway, if Scott cannot. No way I am going out! Too crowded!
In case things were not bad enough, something is wrong with my bed and has to be fixed before I can sleep in again - and my car fell apart - literally!. It started making a strange noise as I dropped off Shannon at her school, and continued the mile until I got home - and then a piece fell off in the driveway!. But with Scott not driving - we have a spare car! But we had a minor accident in Memphis (I bumped into someone and bent up the hood, and damaged the front fender. Not the car that fell apart - the other one!) So that has to be fixed sometime too.
I once again want to thank all the folks who have helped us out so we can go to Memphis and get a new liver. There are many folks I need to thank, but the bigs ones are my mom for watching the kids; my sister, Mary for trying to hold her (and me!) together mentally; my brother and sister-in-law, Paul and Sherry; my cousin, Jenny; … I know I am forgetting a lot of folks, but I do appreciate everything everyone has done for Scott and I.
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Wednesday, May 14 2008 (T1 + 1 yr, 8 months) (T2 + 1 1/2 month, )
Scott is driving! He actually went into the office at NASA today. I am still a little concerned about the wound - it does not look right - but if there is something wrong it is very minor, and be corrected by simply exposing the infection to air. We are seeing the hepotolgist on Friday and hopefully he can take care of it and we will not have to go see a surgeon.
Anyway, as good as our luck has been medical wise recently, we have run out of luck when it comes to cars. We have three vehicles (one is a big low mileage van we only use for vacations). All three vehicles are need of major repairs. I actually had to stay home from work today because we were down to one working vehicle (the Subaru still needs to be fixed - but it can wait) but Scott had to go to the office and take care of something - and the repair shop was late with my CRV. My CRV is now fixed, but the van probably needs a new transmission and the Subaru needs body work where i had a little accident while in Memphis. But, I would rather my cars need surgery than my family.
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Tuesday, May 20 2008 (T1 + 1 yr, 8 months) (T2 + 7 weeks)
Scott updating: I know we haven’t updated the site for a while; partly because we’re keeping busy, and partly because I just haven’t been feeling great. We went to see the hepatologist (liver doc) on Friday, and he’s just a bit concerned because one of my enzymes is elevated and the level of one of the main anti-rejection drugs is low. We’ve increased the AR meds lately, but the level is still low. We’re keeping an eye on that, and doing some tests to try to nail down the cause. Also, the area of the incision that Martha was concerned about got even redder, so today we saw a transplant surgeon to follow that up. He opened up a small area and took a culture sample, so we’ll treat that as appropriate. I’m still losing weight, sore in a couple of spots, and getting tired easily, and that’s no fun. To use the surgeon’s term, I don’t feel like I’m “thriving”.
Despite all that, I went to my favorite Dalhraidian ceremony this weekend at a friend’s house in Gettysburg. It worked out great, even though there was a generous amount of rain. Because of the rain earlier this week, he had spread out a bunch of sand over the swamp where we were to have our fire pit; kind of a ‘Beltaine on the Beach’. Because we held it there (as opposed to the traditional camping spot on an island), they had a nice warm house to retreat to as necessary for warming up and sleeping. This is the ceremony at the beginning of May to encourage fertility of the crops and livestock throughout the rest of the year. Grow crops, grow. Grow liver, grow!
It hadn’t hit me until Saturday that there is actually a part inside me that was literally dead for a time, and is now not only living again, but keeping me alive as well. Thriving or not, that’s pretty amazing. I haven’t thought much about the donor until now, and maybe things have finally settled in enough for me to think about it. From what I’ve heard, my liver came from a male about my age from Memphis, who happened to pass away in the same hospital where I was a patient. Beyond that, I know nothing of him. There was terrible weather at the time, and our thought is that he was probably killed in a car accident, but we really don’t know, and it doesn’t matter. I am just so grateful that his family saw the opportunity for him to help people one last time. Having been in a position of needing an organ, it seems to me only reasonable to donate, but I occasionally stop and wonder what it must be like to know that a part of your loved one is still out there somewhere. It has to be a very unusual feeling, and I’m just so glad that they were able to deal with that; many can’t. Maybe I’ll be able to send them a message assuring them that the gift is greatly appreciated.
For now, we just keep smiling.
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Monday, May 26, Memorial Day (T2 + 8 weeks)
Busy weekend. I decided to attack the backyard and the weeds. Made some progress. The girls helped some. We took many wagon loads of yard waste down to the woods. Unfortunately, there was more yard than energy. I would work for a while and see more places that needed work. To make matters worse, now I have poison ivy.
Scott helped out too. His main job was foreman. His energy level was low but he was able to clip bushes, fix the fence, and help get the girls helping out.
Today we went to a nice picnic and had a good time - and the girls went for swim at the pool to get summer started out right. Scott had a good time but he barely could follow what was going on because he could not hear.
As I said, Scott was a bit depressed - his abdomen is hurting again. They did an ultrasound a week ago, and it did not show anything. That helps to keep his energy and spirits low. Plus I just found out he had a dream on Friday night that did not help. He dreamed that he woke up and his hearing was back and his stamina was back to normal. In his dream everyone was happy for him and he felt good about himself. Then he wake up, still deaf, and still hurting.
The good news is the blood test numbers are starting to creep in a better direction. His anti-rejection medications had got real low in his system (he is metabolizing them differently - and they are not staying in his system like they should.) Then one of his liver enzymes started to get really high. They started talking about possible rejection. So they increased his anti-rejection medications and now his liver enzyme is creeping back down. Dodged a bullet. But his red blood cell counts are very low (he is anemic). Not low enough to get a transfusion - but it does help to explain the low energy levels. I wonder if this is also a factor on why he can’t gain weight?
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June8, 2008
started a new page go to Daily Status 7.
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