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Monday, 22 Dec 2008 (T1 + 2 yrs, 3 months, T2 + 8 months)
As most of you know, Scott and I celebrate Winter Solstice as well as Christmas. As we stood around the fire Saturday night (yes, it was very cold!) taking about “in ancient times”, our ancestors wondered that as the days got shorter and shorter and the nights got longer – that maybe the the sun would stop coming up all together. So they celebrated the Winter Solstice, and the sun coming up, and days start longer again (but it still gets colder!). Anyway, I realized that I was going through a winter solstice myself. I had been a long dark cave of Scott’s medical problems and deafness for a long time – and I was starting to see a light at the end of the tunnel. I was nervous that the light would turn out to be another oncoming train. But I am starting to believe it is the dawn!
Scott and went to have his Cochlear Implant activated this morning. I was hoping he would hear something – and over time he would be able to understand the words. Scott had almost convinced himself it would not work at all. But when they turned it on and after a little “tweaking” he could understand the audiologist! (He even heard the processor “turn on” which is unusual for first activation). He still is reading lips to assist in understanding for now (it will get better with time), but after the appointment we went to lunch and “talked”. It does not matter it was only a cafeteria hotdog – it was one of the best meals I have had in a long time. 
For our second medical appointment of the day we went to see the hepatologist (liver doc). He has decided the the pain in Scott’s back is probably a pulled muscle or small crack in a rib, probably due to hernias in his abdomen, pulling in strange ways. Hopefully wearing a brace to support the hernia will help the muscles enough to heal up the back.
Anyway, the doctor is starting to wonder why Scott’s liver numbers have gotten nice and low – but never returned to normal – and he is still anemic. (Low red cell count). So he has put Scott back on Procrit for a while, and he is going to do some testing, during which “he does not expect to find anything, but he wants to make sure anyway”. So in case having to go into Baltimore for two appointments today, and the second activation appointment tomorrow (his mind is adjusting so fast he needs to have the processor “tweaked” again tomorrow – and again next week!) isn’t enough, we now have to go Wednesday for another appointment for one of the tests. (I will avoid graphic details – but let us say they are examining his digestive system). Next month they will do a liver biopsy just to make sure nothing is wrong.
In other news, Shannon had her dance concert and Erin had her Baritone concert and both did great! Of course, I am prejudiced! Scott went to both concerts even though he could not hear the music. (He is a good dad, but he teased Erin that “the musicians forgot to turn on the instruments”. And he described the dance concert as “choreographed, epileptic fits”. ) We are, of course, gearing up for Christmas – and all the stress that causes! My sister and one of her sons are coming into town tomorrow. We have plans to visit all of the grandparents, etc.
As this year draws to a close, and many of my friends and family are suffering from this recession in various ways, I am grateful that, although I have temporarily lost much of my retirement in the stock market, we both still have steady jobs – and health insurance! I also am grateful for friends and family that love me and my family (and I love them too).
(I heard a horror story today about health insurance today – they had insurance and when the son was in a car accident and insurance paid what they were going to pay – they still owed over $200,000 in medical bills! That was WITH (bad) insurance! The family had to declare bankruptcy.)
I am sure Scott will chime in soon and describe what his “hearing” is like.
Everyone have a Merry Christmas, Blessed Solstice, Happy Hanukkah, and/or a Happy New Year! (Anyone out there reading this celebrating Kwanzaa? If so Happy Kwanzaa!)
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Friday, 26 Dec 2008 (T1 + 2 yrs, 3 months, T2 + 8 months, Hearing + 4 days)
Scott updating: Wow, what an amazing four days it’s been! As Martha said, the implant was activated on Monday, and has worked very well from the start. I am currently about two months ahead of where I expected to be, given the descriptions of others’ experiences. For example, I am listening to talk shows on public radio for practice (when I can understand voices with no speech-reading, then it is even easier if I can see people). On Monday, I could barely make out the difference between speech and music on the radio. By Tuesday, I could generally tell that they were talking, but no words recognized until Wednesday. By Thursday I could recognize short phrases, and today I could get whole sentences. I still missed some of the details, but I could tell you what they were discussing in general terms. Tomorrow, Car Talk!! What surprises me is that music is still almost silent to me, though I have been able to follow along with two holiday carols so far (with concentration). Soon I want to try the attachment that lets me connect directly to a CD player, without room noise.
My own solstice symbolism is a bit different than Martha’s. On the day after the solstice (Monday), not only did I begin to emerge from the darkness, but also from the silence as well. What an appropriate day, and a fantastic outcome. I’m sure that eventually my learning curve will start to flatten out, but for now every day is a new adventure and opportunity.
As for the hepatologists’ holiday gift to me, he didn’t find anything necessarily bad, but he did find something a bit unusual. He wants to repeat part of the test with an ultrasonic probe next month, to confirm that everything is OK (thank goodness he’s only going in from the top this time, though).
In general, I’m not feeling too badly lately. I had enough energy over the past three weeks to tackle a woodworking project in the basement workshop, producing a quilt ladder for Martha as a Christmas gift. She has some beautiful quilts made by her grandmother, and until now they have been confined to a blanket chest, where no one could see them. We might only display them on special occasions now, but at least she has a place to show them off. If anyone knows of a way to protect them while on display, please let me know, and we may be able to leave them out more.
Well, that’s about it for now. I’ll try not to bore you with constant updates on my hearing progress, but this is a very exciting time for me. As much as the improvement in communications, I also love just learning about the hearing process first hand.
A joyous ‘Solsti-kwanza-hanu-mas’ to all (my apologies if I missed you with that broad net). Keep smiling, and I’ll definitely do the same, Scott
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Saturday, 03 Jan 2009 (T1 + 2 yrs, 4 months, T2 + 9 months, Hearing + 12 days)
Scott updating: Welcome to a new year, and a ‘cleaner’ web site. We stored away some of the old stuff, so that the current status is easier to find. We also updated the summary to reflect the whole saga thus far. If anyone wants to access the old detailed status reports, just let us know and we can make them available.
My hearing continues to improve daily, though the rate of improvement has slowed down a bit. At this point I can usually tell about 70% of what’s being said to me, as long as I know that someone is speaking and I can see their face. I have now tried out the direct connection, and it really works well for recordings and radio. Due to schedule conflicts, though, I still haven’t managed to hear Car Talk (maybe tomorrow). The implant works so well that we are now starting to take it for granted that I can hear, and we all have to remind ourselves that it isn’t always the case. My comprehension still isn’t perfect (probably never will be), but it is so much better than even last week, when I was amazed by the progress.
Medically, I’m still very tired most of the time, and I have been very sore this week. Earlier in the week I was nervous about my health, and decided to take most of the week off to rest up. Nice plan, but resting is not something that I do well. I’m really hoping that the Procrit can once again help, when it arrives next week. Ultimately, though, we really need to find the cause for the ongoing anemia. In addition, I’m still looking for another doctor who can help with diagnosing my joint problems, and hopefully a solution. I have a good lead on the right doctor, but had to wait until after the holidays to call his office.
Keep smiling…
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January 10, 2009
Martha here. Scott’s hearing continues to improve although at a much slower rate. Someone gave me an article about the choice to get a second Cochlear Implant. Maybe. Someday. But not for at least a year. At this time, the benefits would not outweigh the risks. He is still high risk when it comes to any medical procedures, so the doctors are not likely to sign off on a second one for a while.
Scott noticed his hernia is getting worse. The muscles in his stomach around the incisions are not connected like they should be. (Something about being cut apart and sewn back together multiple times, and then lots fluid buildup pushing on the muscles from the inside straining them until they tear apart.). That should be fixed someday, but again, for now, the risks outweigh the benefits. So if you see him, and it looks like he has an enormous beer gut – know that he is: 1 – not drinking beer. 2 – that it is the hernia (and some fluid buildup), not fat.
Yes, the fluid is buildup (ascites) has never gone away completely. Just this week he noticed that he gained 8 pounds in water weight. (I am not THAT good of a cook!). He has been trying to eat a “normal” salt diet. (aka, actually keeping to the 2000 mg of salt a day that federal guidelines recommend. It is harder than you think. You should try it for a couple of days. All processed foods, even bread, have lots of salt because it is also a preservative.) When he goes much lower than 2000 mg, his legs will cramp up at night.
The good news is, he has managed to get to physical therapy on a regular basis, which helps keep him limber and mobile.
I have stuck to my New Years commitment and I have made it to the gym three times this week! The girls don’t know it yet, but I am going to drag them to the gym with me today, too. I decided it is like eating vegetables, and I need to make them do it. I have no illusion that all this exercise is going to make me look like a super-model in a month’s time, but I am hoping for my jeans to fit a bit better and getting around a bit easier. My biggest enemy to keeping up with the exercise is time. Making the time to go on a regular basis.
BTW – Carol K, congratulations on your retirement! I am sorry that it is not a true retirement where you get to go enjoy a new hobby or traveling, but instead you are immediately going back to work. Hopefully you can retire for real in a few years and enjoy life before your health starts to deteriorate. I am glad your nieces and nephews recognize the sacrifices you made for your sister, to help make her passing more comfortable, and less lonely. I hope your husband realizes all that you are doing for him too.
Fortunately for me Scott does realize all that I do and says so. This is true for everyone – appreciate all that folks do for you – and remember to say “thank you”. Those two words can be very powerful.
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Saturday, 15 Jan 2009 (T1 + 2 yrs, 4 months, T2 + 9 months, Hearing + 3 weeks)
Scott updating: This was a very strange day.
As Martha said, I seem to be retaining fluid at a high rate. The weird part is that we got my latest blood test results today, and my sodium content is very low again. I’m not sure how those two things go together, but hopefully the doctor can enlighten us. We’ll be seeing him on Friday for a “poke and scoop” (biopsy).
This morning I learned that a good friend had passed away suddenly, and it really hit me pretty hard. Not only had I know Terry for almost 20 years, but he’s about my age, lives in Columbia, engineer at NASA, etc. I’ve always sort of identified with him closely, and will miss him a lot. When I heard about it, time literally stopped for me, and the rest of the day I kept thinking it was morning. A bunch of his coworkers gathered to share stories and support each other, and I was fortunate to be there for that. As soon as I heard about his death, I just had to be there right away. I haven’t worked in that group for eight years, but still feel like I’m part of the family.
One friend pointed out that because he had died suddenly at least he didn’t suffer, and that this was the best way. I didn’t disagree with her at the time, but I think that she was wrong about that. Having been so close to the final exit a few times, I was grateful that I had had time to prepare myself and others for what might happen. To be taken so suddenly has left all of his friends and family devastated. Knowing Terry, I think he would have preferred to endure a bit of suffering in exchange for the chance to say goodbye. Not that any of us necessarily gets to choose…
I also went to Carol’s semi-retirement party later. It was a welcome distraction, and really helped me to regroup somewhat. I still wasn’t able to get anything done the rest of the day, but at least I was in a little more conscious daze.
I’ll try to smile again tomorrow.
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Thursday, 19 Feb 2009 (T1 + 2 yrs, 5 months, T2 + 10 months, Hearing + 8 weeks)
Scott updating FINALLY: Okay, I’ve been a slug. More accurately, I’ve been really busy with work, and too exhausted to do an update. I guess you could take that as good news, since not only did nothing big go wrong, but I felt good enough to work my butt off.
Health-wise, I’m very stable. My weight still fluctuates as much as 8-10 pounds over a week, but there has been no more indication of low sodium problems. The liver doc finally got to do the liver biopsy, and he should get those results in a few days. In his words, he doesn’t expect to find anything unusual, but he is curious about why my blood test numbers still aren’t where they should be. I’m still going for physical therapy three times per week, and it is apparently helping a lot. Today I went to lunch with a friend I haven’t seen in about a month, and he mentioned that I’m walking faster and steadier. The therapist switched my schedule to more land exercises, fewer times in the pool, and tougher overall exercises, which is another indication that I’m getting stronger. The aquatic sessions still kick my butt, though; an hour and a half of continuous arm, leg, and back exercises, moving through salt water can really take it out of you.
The cochlear implant has been such an improvement to my life. My comprehension just keeps getting better and better. When I’m not tired, and there isn’t too much noise, I can usually understand more than 90% of what is said. Even over the phone, I get about half of the words without reading the captions. I’m not ready for a cell phone yet, though. Still, that’s not bad, when you consider that I am actually still completely deaf. I’ve even lost much of my speech reading skills, and I have a lot of trouble understanding what is being said at the pool (I have to take the processor off, since it’s not waterproof). Music is making more sense, but only songs that used to be my favorites anyway.
The family’s about the same; always little stuff going on, but no big changes. Girl Scout trips, homework, school, homework, shopping, friends, homework, all the normal stuff that fills the girls’ days. It’s about all Martha and I can do to keep up with them. We’ve gotten to visit with our parents some, but not enough. Martha’s mom spent much of the past month in Hawaii, then back for a week, and off to Florida for a short vacation (to recover from all the stress of a month in paradise). Meanwhile, my dad made another trip to the Dominican Republic, to work more with the mission that he operates there.
Most of my time has been spent on work lately (along with all the doctor and physical therapy appointments). In addition to a bunch of missions getting ready to launch, you may have heard about the big crash last week. For the first time in the fifty years of space flight, two full-size satellites, one active, and the other already turned off, collided spectacularly over Siberia, apparently releasing at least 600 pieces of smaller debris. The smaller pieces are now spreading out over various altitudes, but mostly approaching a big constellation of our Earth science satellites. This will likely complicate our lives for at least the next 8-10 years. So, keeping an eye or that and shepherding all the missions to launch have kept me hopping, as opposed to updating this site. Hopefully things will settle down soon, and I’ll have a moment to breathe now and then. Wish me luck. In the meantime, keep smiling, and I’ll do the same.
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Wednesday, 25 March 2009 (T1 + 2 yrs, 6 months, T2 + almost 1 year, Hearing + 13 weeks)
Scott updating FINALLY again: One month between updates is getting to be about normal now, which is actually a good thing. All the news is good. My liver is still hanging in there, and happily preparing for its one year birthday next week. My hearing is getting better all the time, and I can now understand almost all conversations either in person or on the radio. Physical therapy is finally effective enough that starting next week I reduce the number of times that I need to go. And for the first time in two and a half years, there’s no bed in the sick room any more. Yeah, I’m once again approaching my own brand of ‘normal’.
A year ago this morning we left to drive (post haste) to Memphis. While the success of my transplant is cause for celebration in Maryland, I can’t help but remember that somewhere in Memphis there is a family remembering that a year ago they lost a loved one. I am sorry for their loss, and I wish that I could let them know that some good followed their generous donation. I plan to look into somehow getting a message to them. I didn’t hear anything about that possibility last year, but I think there is a mechanism for doing that which protects the family’s privacy if they wish. I’m going to try.
Oh yeah, it’s also my birthday today. Today was my main goal. I remember telling a nurse at Hopkins about 18 months ago that I felt like if I made it to 45, I’d live forever (or something like that). Well, I guess I need a new goal. How about 65? That would be 21 years on this liver, so I guess it can legally drink by then. Actually, my next goal is to be able to water ski by June. The physical therapist thinks it is quite do-able, so I’ll post pictures.
In many ways, this birthday for me has been the way that some people use New Years to set resolutions and make some changes. I used most of the day to close out a bunch of the little things that have needed doing for a long time. E-mails that have needed sending, prescriptions reordered, finally setting a date and location for a big meeting for work, and I finally went over to the dark side of photography. I’ve resisted Photoshop as long as I could, and used every other practically unheard-of photo editing software, but I figured maybe after a dozen years or so the rest of the world might know what they’re talking about. Besides, it was on sale really cheap.
I am trying to change some basic things, though, to reflect the next phase of my recovery. I’m planning on trying to spend at least a few hours of every day working from my office in greenbelt, as opposed to almost all of it from home. I’ve been putting in full days for a long time, but with so many physical therapy and other appointments, I had to get creative with my schedule. We’ll see how it works out. Sleeping upstairs in a normal bedroom helps to get the day started, too, so that should help. Now that I’m recovering some strength and balance, I’ve also stopped using the handicapped parking and elevators whenever I can. I could use the exercise anyway.
Things are looking up, and I’m feeling a lot better. Keep smiling, because I’m doing the same.
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Friday, March 27
Martha updating: I want to update you on the rest of the family.
Yes, my daughters (especially Erin) are big into Twilight, both the books and the movie. We stayed up until past Midnight the other night so we could go to a “Release Party” for the DVD. Erin’s favorite character is not Edward, but rather a smaller character named Jasper. If she sends you a text message it is signed “Peace, Love, Jasper”. She is turning 12 next month.
Shannon is more into a series called “The Wheel of Time” by Robert Jordan. These books make Harry Potter books look like short stories! Unfortunately the series was suppose to be 12 books long – and the author died before finishing the 12th book! But he left good notes and a ghost writer is suppose finish and publish the last book this fall.
I have been getting kids signed up for summer camps. Erin is going to Band Camp (she has been playing the Baritone horn all year and has improved a lot) and Shannon will hopefully be going to a Math Camp (yes, I am raising an Super Nerd).
Tonight we are celebrating and I ordered ribs sent up from Memphis! Remember us talk about Rendezvous when we were in Memphis? They do overnight express (FedEx is based in Memphis) around the country. That should be fun. I wanted to do a party and invite all of our friends and family, but all of our weekends are booked! When I think back and remember how sick he was a year ago – he has come a LONG way.
Anyone know of a good, honest, landscaper (that will call me back) that works in the Howard County, MD area that they could recommend? Our yard needs some major overhaul (it has for several years – but we are going to do it this year) .
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Thursday, 9 April 2009 (T1 + 2 yrs, 7 months, T2 + 1 year, Hearing + 15 weeks)
Scott updating: Wow, a lot has happened in a couple of weeks. First, to answer Mary’s question, the ribs were great. Personally, I preferred the pulled pork, but you could coat an old shoe with that sauce, and it would be incredible. My liver seems to have enjoyed its birthday celebration.
The bigger event, though, was that we all went to New York this past weekend for three days. We’d been playing with the idea of going somewhere for the beginning of Spring break, and even considered New York, but it was a daunting challenge to figure it all out. Martha had been there a couple of times with others, but the rest of us had never even seen the town. We had sidelined the whole idea, then with only a few days to go, we found a good deal on a hotel in Soho, and off we went. It was a team effort. Erin had the original idea to check out New York. I discovered that even for four of us, we could actually save money (and fatigue and frustration) by taking the Megabus instead of driving. That meant figuring out the taxis, which Martha got, and the subways, which took Shannon all of about ten minutes. Shes was our navigator for the whole trip, and did great. I think that was a real confidence boost for her. I’ve been on subways in a bunch of cities, but New York has to be the most complicated system out there.
Among other things, we saw the American Girl Place, Rockefeller Center, Staten Island Ferry, Statue of Liberty, Times Square, Central Park, FAO Schwartz, and lots of other sights throughout Manhattan. And we walked, and walked, and walked, and walked some more. But I’m glad to say that I was able to keep up with all that walking – it wasn’t always easy, and it required lots of Tylenol, but all of us kept up and we had a great time. Now the girls really get a kick out of watching TV shows that are filmed in New York. We saw one last night that had been filmed within a few blocks of our hotel, in an area of Chinatown that we had walked through just days earlier – that was cool.
Health-wise, things are going well. my strength and balance continue to get better, and I think I may have only another couple of weeks in physical therapy. Hopefully I’ll be able to keep up with exercise on my own, but with summer coming that should help. Otherwise, my liver’s still happy, and the hearing just keeps getting better (if slowly).
Well, that’s about enough for now. Keep smiling, because I’m doing the same
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Monday, 11 May 2009 (T1 + 2 yrs, 8 months; T2 + 1 year, 1 month; Hearing + 4 1/2 months)
Scott updating: OK, another long break between updates. (At this point, is anyone reading but Mary?) Lots going on with kids and friends and such, but I try to stick to recovery and medical updates. I’ll leave the family stuff for Martha to update.
My recovery is going better all the time. Lately, I’m just amazed by all that I can do. I’ve been known to lug around 40 pound bags of topsoil, wash and wax the cars, eradicate large expanses of bushes, and I’ve even sworn off elevators most of the time. Heck, yesterday I even mowed all the yard around our house, when the wet weather caused the lawn guy to be way overdue. The liver doctor and blood test lab agree, and my numbers are very stable. Still some lingering unexplained blood test numbers (low platelets, anemia, and slightly high bilirubin), but at least it doesn’t change much.
And my pseudo-hearing is still getting better all the time. A couple weeks ago I got a new program that works really well with music, and now I can enjoy listening to a bunch of old albums while I’m at work. My phone comprehension is still only about 50%, but hopefully that will continue to improve. I’ve been working from my office almost every day for the past month, so the hearing really improves things. And with an office on the fourth floor, that elevator avoidance helps me get my exercise. I’m still on track to water ski as soon as we get the cabin opened up, and the water warms up a little. Until then, I’ll keep smiling, and you do the same.
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Friday, 3 July 2009 (T1 + 2 yrs, 10 months; T2 + 1 year, 3 months; Hearing + 6 months)
Scott updating: Yikes! I just realized how long it’s been between updates. Everything is still going well in medical terms. Now that I’ve pretty much recovered, there isn’t much to report. I’m thinking about changing the purpose of the web site considerably, and just writing whatever is on my mind, instead of medical updates. Done being sick, done talking about being sick.
One thing that I guess I may have commented about, but without the details, was water skiing. Indeed, I have been skiing twice this year so far. Still on two skis, but with hopes of slaloming by the end of the summer. I need to work out a bit, and build up more abdominal and leg strength before that can happen. I tried a couple times, but just couldn’t pull myself up out of the water. Skiing at all, though, was the last of my really big goals for recovery.
Today was not a lot of fun. I had to stay home and work all day, despite having off for the Fourth. I spent about 10 hours writing a 61 page report for work. The project needs it by Monday, and I only got the majority of the input information sent to me late yesterday, so it had to be done today. I think it turned out pretty well, though, so hopefully there won’t be too many edits. Not sure when I’ll get to take the day off, though, since the next week is booked solid.
You probably heard in the news last week that Steve Jobs from Apple Computer announced that he had a liver transplant recently. What you may not have heard was that he had the same doctor in the same hospital as I had for my second transplant (Memphis). CNN ran an article a few days later asking “Did Steve Jobs’ money buy him a faster transplant?” The title itself was really mostly a teaser to get attention, because the article was actually a very comprehensive review of the current liver allocation rules, and an explanation that there is no way to buy a liver legally in the US, or even use money to influence the decision. That said, the fact that he had resources available to him did allow him to exercise options that others might not pursue, such as getting listed in multiple regions. Since I did this myself (with a bank account in the thousands, as opposed to the billions), I guess I don’t see it as cheating. In my case, it was an indication of just how badly I needed it.
What really bothered me about the article, though, was the comments that it inspired on some other web sites (the CNN site does not collect comments). I read one site where there were almost 200 comments. What was really sad is that about half of the comments sounded like a reaction to the title alone, having not even bothered to read the article. They basically answered that of course he bought his place in line. I guess it is a true picture of how some people think, but still it saddens me to think that so many people are so cynical. I know from having been there that the organization that makes the offer doesn’t even know the name of the recipient, much less his financial worth. As little as ten years ago the allocation system wasn’t quite as objective, but these days the biggest driver is your blood test results – if you ain’t really sick, you gonna wait. The remainder of the comments were about 50/50 between defending the system, and recognizing that his wealth probably did play an indirect role in increasing his odds.
I lean a bit to the liberal side of the spectrum, and I believe that no one should be outright denied an opportunity to receive lifesaving treatment that they need. But at the same time, I think that you should be allowed to exercise whatever legitimate options are available to you. Let’s face it – money has always been able to buy a better life, whether in terms of medical treatment or a bigger house, or whatever. If you can’t use it to open up more options and increase your odds of getting lifesaving treatments when you need it, what is the point in working hard to earn the money in the first place? Isn’t that why we all encourage our kids to get a good education and good jobs? Otherwise why bother?
Wouldn’t it be great, though, if there were enough donated organs to help everyone who needs it, and we wouldn’t even have the debate? Keep smiling
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Monday, 20 July 2009, 10:56 PM (T1 + 2 yrs, 10 months; T2 + 1 year, 3 months; Hearing + 7 months)
Scott updating: Forty years ago at this moment mothers all over the world allowed their kids to stay up to watch TV extra late. One was a five year old, who remembers it clearly after all that time. I didn’t know just what was so great about it at the time, but figured it out in the years to come. Growing up, I remember having several maps of the solar system and the moon that had been given away by Esso gasoline company, and casually stashed away with the encyclopedias in case we ever needed to write a paper about space for school. Well, I write a few papers about space now. Is it just a coincidence that I now work for NASA? I can’t see how it could be. Thanks for letting me stay up, Mom.
It’s an unusual and potentially wonderful time to be at NASA. We just lost one of the best media friends and supporters that we ever had in Walter Cronkite. I really enjoyed watching all the tributes to him on Sunday, especially his coverage of the lunar landing. It must be something special to have reduced such a professional journalist to simply “Oh Boy”. I can feel a desire to springboard off on the anniversary, that just wasn’t there ten years ago. We have a new administrator coming to the agency, and he’s someone we believe in. I think if it was left to the employees to nominate someone, Charlie Bolden is the person we would have picked. In the weeks since his nomination became official, I have felt a subtle change. Many people seem to be preparing to move forward, doing a bigger and better job. We seem to also be getting strong support from the president and congress, and if that continues I can only imagine where we’re going. The moon is only a small part of it, and I think we’ll see a lot of technology spinoffs into areas that the country needs. That’s the talk around the water cooler, anyway.
Nothing terribly exciting on the medical front. I got the cochlear implant reprogrammed this morning, so there will probably be about a week of figuring out which program to use when, and then months of even better comprehension than I had yesterday. Martha went along, so that we could be sure to tailor one program to her voice patterns. Last time I came back less able to understand her and the girls, so that wasn’t great.
We’re getting ready for our regular annual camping trip, staying for the whole thing this year. That should be relaxing, and hopefully somewhat healing as well. I still have a little ways to go. I might yet get up on just one ski this year. Keep smiling, and I’ll do the same
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Sunday, 6 September 2009, (T1 + 3 yrs, 1 day; T2 + 1 year, 5 months; Hearing + 9 months)
Scott updating: OK, this time I have something to tell. It’s taken me three years and a day, but I have finally achieved the biggest goal for my recovery from liver disease. Today I slalom water skied for the first time since five weeks before the first transplant. I feel like I am now officially BACK!
I think that smile says it all
Well, we’ve been updating this site for three years, and I’m glad to say that the last few months have been especially boooooring. It’s been exciting for me to see the little bits of progress, but often they are details so miniscule that others don’t even notice them. Suffice it to say that I am back, I’m no longer sick, and no longer talking about being sick (at least not in a present sense). As soon as I can make some time, I hope to completely revise this web site. I’ll still have an overview of the biggest bumps in the road, and of course the outcome, but I want to then go on to focus on the things that I have learned through this whole process. Ideally, it will be a resource for people who are forced to consider liver transplant, serious hospitalization, or hearing loss and regain. I feel like now that this chapter is finished, it’s time to write the textbook and move on. As time progresses, I might share some other random thoughts as they occur to me, and see what other people think about it. For the next month or so, though, while the weather is still good I will probably spend most of my spare time working around the house. I’ve got a lot of catching up to do.
Anyone still reading this site is among the group of people that I must thank for all of your love and support for three years, and even before that in many cases. What a long, strange trip it’s been, but without you all I feel certain that it would have been much shorter, with an unhappy ending. You all have saved me, and I will try to make your efforts worthwhile. Thank you all.
Keep smiling – as you can see I already am!
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