Scott and Marcus website

Saturday, Nov 17 2007, evening (T1 + 1 year 2 months)

Decided to start a new page, I hope you find it.

Weird news about the MRI. Actually an MRCP. After the doctors pulled strings so Scott could get the MRI today - everyone found out the hard way that apparently they cannot “process” it until Monday. The doctors were MAD but apparently it is not under their control. Basically no info at all until Monday - so absolutely nothing can be done or decisions made until then. The only thing is by having the test on Saturday, the specialist who must “process” the info will have the raw data Monday morning and does not have to wait until a Monday morning MRI to get the information .

But since we could not the info from the MRI/MRCP until Monday, they did tell us what they are hypothesising the problem is. It is probably one of three things.

1) The MRI will show that the bile ducts are constricted (closed up) meaning that PSC is back. It is bad enough that they will need to do an ERCP immediately and put in a stint to open it back up. Remember when we said “do not touch the liver” because everytime they do it causes an infection? He has had stint once before - and got a HORRIBLE infection. (This was when he was first diagnosed with PSC - and it was over Thanksgiving 5 years ago ….)

2) The MRI will show the bile ducts are dialated (too open) meaning the constriction is further down in the bilary tube. I don’t remember what the treatment was - but it was not good either.

3) If bile ducts look fine, and he will immediately go for biopsy (which can also cause infection, bleeding, etc). Then use that to determine if he is suffering from rejection. They need to start the anti-rejection medications asap - but if they start them before they are sure, and it turns out the problem is PSC, that could make the PSC worse. (Been there, done that, don’t want the t-shirt).

So they must tread very carefully but quickly - and they are very frustrated they must until Monday.

Needlesss to say, Scott will not be able to go to his conference and make his presentation, but he can attend “virtually” via the internet and doctors have promised to do what they can to let him “virtually attend” as much as the conference as possible. He has been working to make careful notes so that someone else can take his slides and do the presentation. We have also had to reschedule our Thanksgiving plans.

I will probably not be undating again until Monday unless there is a change of plans.

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Monday, 19 November 2007 afternoon (T1+1 year, 2 months)

Scott had a biopsy done this morning. (The main purpose was to look for signs of rejection, not cancer - but they will use it to rule out cancer while they are at it.) so he had to spend most of the day in bed. And due to technical glitches at NASA - he was not able to attend his conference, vitually

Anyway, I happened to have stepped out when the doctor came and explained what they know so far. It is not PSC. There is no blockage that can be found. It is not rejection. It is not cancer. They are going to double the medicine he takes to keep his bileducts open. Other than that, the doctors are scratching their collective heads and thinking.

So for now, no nasty proceedures (the biopsy went well, no bad side effects so far.). Will update again when I know more.

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Tuesday, 20 November 2007 afternoon (T1+1 year, 2 months)

Scott updating: So check this out. They aren’t sure what the heck is happening, so they resorted to the doctors’ favorite treatment: wait and see. They sent me home this afternoon, with instructions to enjoy myself, and call them if anything important happens.

The high bilirubin count apparently serves as an indicator (kind of like an ‘idiot light’ on the dashboard). Now that it has gotten our attention, we can ignore the light itself (the Car Guys’ famous ‘black tape fix’ for some dashboard lights). The bilirubin itself can do no harm, other than turning me bright yellow, and making me itch like crazy, and it’s doing both admirably. Between ultrasound, MRI, MRCP, and biopsy, they had ruled out rejection, cancer, and bile duct blockage. What’s left is head-scratching. They did adjust two of the meds a bit. My antirejection meds were too high, causing my kidneys to produce extra creatinine (which ain’t good), They also tripled the medication that keeps the small ducts open.

So I’m home. I took off half of Wednesday and all of Friday to relax, and we’ll just keep an eye on it. Of course, there was a whole new honey-do list as soon as I walked in the door. But I’m glad to be back doing house and car work. Feels like me again.

Keep smiling, and I’ll do the same

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What day is this??? Oh YEAH!

Thursday, Nov 29 2007 (T1 + 1 year 2 months)

I hope everyone had a wonderful Thanksgiving. We had a busy one as usual. Mary, her husband, and her sons came down from Pittsburgh. My cousin, Jenny, came up from Washington DC with her daughter who is half way between Shannon and Erin’s age. (Jenny moved to DC her from Boulder Colorado over the summer. Big adjustment!) Then we had my brother and his son who is Erin’s age. We had 7 kids between the ages of 10 and 15!! What a mad house! Scott could almost hear the din! But it was fun.

After Thanksgiving, I participated in a post-Thanksgiving ritual - SHOPPING on Black Friday. Managed to get some shopping done. It was fun. (yes - I like shopping. ) I did not get up super early - and managed to miss the worse crowds. I actually getting around better than usual since the stores still had plenty of registers open.

My mom had a procedure done Monday to improve her heart and came home on Tuesday. But due to an unexpected heartbeat - we made a quick trip to the emergency room on Tuesday night. But it was a false alarm and she was fine. They “tweaked” her heart today. Scott and Shannon both had appointments as well. So I have seen a lot of doctors this week!!

Scott’s appointment was with the orthopedic doctor about his hips. His right hip is doing great (which is the one that hurt worse before the core decompression). But his left hip is hurting. I think the doctor is concerned that it might be starting to collapse. I hope not. Xrays next month.

Now the bad news. Scott had his weekly blood work done. His bilirubin is up again. I had guessed it would be a”12″ (it was a 10.5 when he went to the hospital before Thanksgiving, and a 10 when he came home). Now it is an 11.8. And his kidneys aren’t great either. No one is hazarding a guess what this means, at this time. But at least they did not mention going back to the hospital! (yet) We have an appointment with Scott’s hematologist next week. I hope that if he wants to do a procedure - it can wait until after Christmas! (But I am trying to get my Christmas shopping done early!)

This coming weekend, we have a big wedding to go to. Scott’s cousin is getting married (she is one of Marcus’s sisters.) We are all looking forward to it. Lots of family. Lots of Hull boys talking way into the night. Dancing? Not my Scott! Oh well.

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Tuesday, December 4, 2007 evening (T1+1 year, almost 3 months) (T2- ????)

On Saturday we went to the family wedding. We had a great time, it was very beautiful and a great family get-together. My wish for the new bride and groom is that they will be as happy as Scott and I - but healthier! They both come from big families with lots of love. I hope that love will surround them always and remind them how important family is. I actually got one dance with Scott! But he did one fast dance and did a lot of standing. On Sunday he was very sore and by Sunday evening the small of his back was hurting. Since he kidney functions are not great, we both got concerned that the backache was related to his kidneys. On Monday night he had bad heartburn as well. But since we had an appointment on Tuesday, we did not do anything.

Well today was the appointment with the main Hepatologist - but when we got there, it turns out they had rescheduled it for two weeks from now - and we had not gotten message. The doctor was not even there. Grrrrr. They claim they had “left us a message”.

So after a small panic it was arranged for us to see a different hepatologist for the day in Columbia. He seemed to think it was probably muscle related (related to the hips) but just in case they did a urine analysis. if it comes up positive they will give him antibiotics, otherwise it will just be muscle relaxants.

But we got some honest talk. The increased bilirubin is an indication that the liver is not getting better. There is nothing they can do about it. Unless it improves - RADICALLY, he will need a liver transplant. The doctor did not sound very hopeful that the liver getting better at this point was possible. How soon he will need the new liver will depend on how fast it continues to deteriorate. But he guesstimated 6 months. Sigh.

Apparently if we get our act in gear, we might have time to get the Chocler Implant before he needs a new liver. If we wait until afterwards - he will have to wait until probably a 6 months to a year to until his risk of infection goes down enough.

I had fooled myself that his liver was getting better and maybe we could avoid a second transplant. I thought we had gotten off the roller coaster, but it had just paused for a while. And the light at he end of the tunnel was just a cleverly disguised oncoming train.

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Monday, Dec 10 evening (T1+ 1 year, 3 months) (T2- ???)

Shannon was had her dance concert this weekend. She has been dancing for grand total of 3 months so she was not the star . But she did good for her experience and I am very proud of her. Many of the dancers had been dancing most of their lives and were very good. Unfortunately, since Scott could not hear - he said the dancers looked like choreographed convulsions.

We still have not had the results of last weeks blood test. The urine analysis showed Scott could have infection or kidney stones. So he is going for another test tomorrow. For some reason I have been very paranoid lately. I just want to get next Tuesdays appointment over with. Kind of like going ahead and pulling that band aid off.

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Tuesday, Dec 18 2007, afternoon, (T1+1 yr, 3 months) (T2-???)

The news is not good. The blood test results from two weeks ago were bad and the ones from last week were much worse. The Cochlear implant - not an option at this time. Nothing can be done for the hips (which the left one is getting much worse) at this time (other than pain killers).

Scott is extremely jaundice looking, his eyes are bright yellow and his face is a grey/yellow. Anyway, to make a long story short, he needs a transplant as soon as possible. And since his kidneys are not doing well, they are going to give him another kidney as well. (They kidneys are working - but stress from the transplant and meds, will probably do them in the rest of the way, and better to get it over with at the same time.).

Yes, this could happen before Christmas. HO, Ho, ho…

He is at a very high risk of infection (the excess bilirubin in his liver can cause infection), if he gets an infection there is a proceedure they can try to maybe get rid of the excess bilirubin, - and then fight the infection, and hopefully get him a transplant. If he starts to get even the smallest fever, I am to take him immediately (do not pass GO, do not collect $200) to Johns Hopkins.

I am very nervous, partially because I don’t know what to expect and I hate the unknown. I feel like I just was told we must walk into Mordor, throw The Ring into Mt Doom, and try to make it out again. Besides not getting lost, we also need to avoid orcs, trolls, and other bad guys in the process. But I am only Sam and I can escape when necessary - but Scott is Frodo and is there until he succeeds and makes it out, or not. (reference: Lord of the Rings by J.R.R.Tolkin. Probably my favorite story.)

I am so sorry we must lose the precious gift of a liver that Marcus gave Scott, but it was not ment to be. Marcus, we still appreciate the gift and still say “Thank you”.

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Thursday, December 20, 2007 evening (T1 + 1 yr, 3 months) (T2-???)

Everyone has been asking “what’s up?”, “what do you know?”, “have the doctors told you anything?”. The answer is, we don’ t know anything more than we did 2 days ago. It is very frustrating being kept in the dark like this. I am starting to have my doubts, “maybe I imagined it …”, “maybe I overreacted …”, if it is as bad as I thought - surely we would have heard something. Then I remember - they are waiting for the latest blood and urine tests to come back, hopefully then they will let us know what is going on (not a “get to the hospital now for your left thumb transplant” and we are like “huh???”) .

When I was at work yesterday and explaining to my bosses that I maybe out for a long time AGAIN. They asked, “why are you here? Why aren’t you at home taking care of him?”. My response: “he is at a Christmas party for work “. It seemed very surreal. So I have been frantically trying to wrap up projects and train other with what I was doing. (My weakness - being able to write down my daily activities so someone else can fill in - or for that matter - handing over my projects that I have worked for many years. I much rather do it myself, then write a program to do it quicker and easier. I always joke - my best asset is I am lazy. I will make a quicker, easier, faster, BETTER way of doing the work.)

Otherwise - life goes on. Erin’s Winter concert was tonight. She took up the trumpet this year. It was not as painful as I thought it would be. As a matter of fact I enjoyed myself. She knows 5 whole notes. They played Jingle Bells and Hot Crossed Buns. Her Daddy went - even though he could not hear and Erin said he did not have to come - because he loves her and want to show his support for her. (Sappy enough?)

My sister and one of her sons is in town for the holidays. Which is nice because it keeps my mom distracted (she was very upset.) I am staying home tomorrow to wrap presents. (surprisingly enough - I hate that job). When I hear that someone already has all their Christmas presents beautifully wrapped and under the tree, I smile - and mentally kick them in the shins. Scott has decided he hates to wrap in paper that is used only one time. He buys cheap cloth (plaid, of course) off the bargain table and wraps each present in the cloth - then he reuses it the next year.

His feet are swelling more than usual so right now he is sitting down with his feet way up above his heart. His ascities is also coming back with a vengeance as well. Check back soon, hopefully we will have something new to tell you. (I keep hoping I get to tell you it was a really bad dream, or I completely mis-understood..)

Our 2007 Christmas Picture (note - Scott used to have skin as fair or fairer than mine.)

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Tuesday, December 25, 2007 evening

From our family to yours, MERRY CHRISTMAS!

Thank you to whoever left the wonderful basket of goodies and the pointsetta plants on our front porch. The girls love the stuffed animals, the food I have sampled is very good.

I got my Christmas wish - no trips to the hospital. As rough as my nephews have been playing, I am surprised none of them ended up in the emergency room yet. Santa Clause has been very good to us so far. It has a been a great Christmas.

I have heard nothing from the doctors or nurses about test results. A little frustrating, but not surprising. I suppose there is a skeleton crew there this week. Unless something needs immediate action, I don’t expect to hear from them until next week. Should be fun though, on January 6, our health insurance changes (no pre-existing condition clauses!) . In the long run it will be for the better, the timing for changeover could be a problem!

Go back to your friends and families and give them a big hug - and enjoy their company!

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Wednesday, Dec 26 2007, afternoon. (T1 + 1 yr, 3 months) (T2 - frighteningly soon)

We got the results of Monday’s blood test. Sorry, I am going to bore you with numbers.

MELD score is a combination of three blood work numbers. One is the amount of bilirubin in his system (bilirubin is the stuff that the liver is suppose to get out of the system). One is the creatine (an indicator on how well his kidneys are doing - when the liver is doing really bad - the kidneys start to go), and INR (an indicator on how well is blood clots. The liver produces a lot of the stuff used for clotting - and when this number starts to creep up - then the liver is in it’s last stages). These numbers are put into a complicated formula that produce a whole number between 6 (healthy!) and 40 (VERY BAD).

When Scott was infected last winter and they were trying to get him transplanted his real MELD score was around 17. They wrote to UNOS (United Network for Organ Sharing) and had it pushed up to 22. (which never got him a liver). At the beginning of December he was around a 22 based on his own blood work. Just before Christmas, we panicked because it had risen to 27 (they almost put him in the hospital) . Today it is 31.

He is the highest person listed at Hopkins with the exception of a guy in ICU - who is a different blood type. All incoming livers to the area must share with Univ of Maryland - and Hopkins has no way of knowing what the status of their patients are. But what this means to us is, keep bags packed, make sure babysitters are lined up, cell phones fully charged, etc.

For now, his kidneys are not quite bad enough to justify putting him on the transplant list for a kidney as well. If the doctors write a letter to UNOS they might be able to get him on the list for the kidney, but I am not sure that is a good thing. Maybe his kidneys will be ok in the long run and a double organ transplant won’t be necessary. Unfortunately, the only way to know for sure is peek into the future. I have not met anyone with that skill yet.

Scott’s ankle is really bothering him. It is very swollen from edema, and apparently a nerve has gotten pinched or something. He is having to stay off of it completely. It hurts even to have it hang down while sitting in a chair so he must keep it elevated.

I hope all of you are enjoying your holidays. Now that Christmas is over, we are both willing to except what needs to be done. So do not feel too sorry for us.

BTW, when you see a “Daily Status 6″ show up, you will know we have gotten “The Call” and second transplant has started.

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Saturday, Dec 29 2007, wee hours. (T1 + 1 yr, 3 months) (T2 - frighteningly soon)

Scott updating: (sorry if you’ve already seen bits of this on a separate message, but it’s late, and I liked how it was said the first time, so I cut and pasted generously)

The past few days have been a bit frustrating for me, today even more so. While I would like to be cleaning up around the house, and recovering my basement and/or garage and/or spare bedroom, I am instead practically glued to a chair with my foot raised, trying to get my ankle to heal up. Right at the base of my heel where the achilles tendon attaches, I get a very strong pain whenever I place any weight on it (or even sit up in a chair where edema collects to press on it). The good news, though, is that the inside surface is much less painful than yesterday, so maybe some healing is finally happening.

Today is certainly a stressful time for the whole family, as our very old cat is clearly closing up shop and preparing to move on. She’s had us for 17 years now, and she will always be a part of us, but the time has come for her to leave. We are all hopeful that as she sleeps peacefully this evening it will be her last. Even Shannon, who has never been able to even touch her before now, is quite upset over Zoeller’s passing. Nobody but the cat is sleeping peacefully tonight. It is so difficult not to draw parallels between the two of us both in failing health, but she has had her long and happy life, while mine is hopefully still ahead of me. I try so hard to remember that difference while waiting to hear about a replacement liver.

It is really surreal to get my blood test numbers back every week, and find that I am so very sick, but feel so well. Maybe this bum ankle is a blessing, as it prevents me from overdoing it during the holidays and the waiting period; I had such grandiose plans for cleaning up a couple rooms over the break, though. The good news is that I’m on the HOPKINS list, where organ availability is among the best anywhere. With their advanced capabilities, the team there is more capable of successful outcomes from organs that other hospitals would have to pass up. So please keep sending those good thoughts, prayers, positive juju, or whatever you’ve got handy.

Keep smiling, and I’ll try to do the same
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Tuesday, January 1, 2008 (T1 + 1 yr, 4 months) (T2 - ?????)

HAPPY NEW YEAR! I did not think we would be celebrating New Years at home this year - but we did. It was actually a good one. We were together, we took it easy, did some stuff around the house.

Scott is now suffering insomnia. We don’t know if it is stress, the toxins building up in his system or some combination there of. But as a result, his energy levels are way down. We won’t discuss his moods. ….

But the stress is getting to both of us. Every time the phone rings - I jump. Fortunately, we have caller ID so I know whether or not to panic as soon as I look at the phone. I fully expected to have been called by now. We both are in ackward phase at work. We have kinda wrapped things up, do not want to take on new projects. But we need to work until we get “The Call” (or something else happens requiring us to stop working.)

I think Scott should not go into the office for various reasons. When someone’s liver is not working anymore, the ammonia builds up in his system and causes a condition known as encephalopathy, where his brain does not work as well as it should. Fortunately, it is reversible, as soon as the ammonia levels return to normal. (We joke - if you can remember how to say it - you don’t have it yet. Unfortunately, by that test I have had it several times. If the test is spelling it - I would be in REAL trouble. Fortunately for you - I looked it up ) I have no way of know if it is effecting enough to make driving inadvisable. Also, his stamina is so low….

Besides he needs to stay off his legs. When his left hip hurts - he puts extra stress on his right ankle causing it to swell and hurt. So he favors ankle, causing his hip to hurt more. So I guess the answer is to rest both.

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Saturday, January 5 2008 (T1+1 year, 4 months) (T2 - ???)

We got the results of Scott’s latest blood test results. They actually improved this time!! His MELD score is down to 25. I am not sure if it is good news or not. He is no longer top of the list - and considering when he was at the top or near the top he did not get a liver, now that we are further down - I doubt he will get one in the near future. But I don’t think he is quite so sick. He seems a lot better in little ways. Less yellow, less gray. But I am still paranoid. He could still get an infection or something else could go wrong before he get this liver. But I don’t think we will get it in the immediate future.

Scott has not been sleeping well. For some reason, liver problems upset the normal sleeping patterns. On the days he does not sleep well, he is miserable. More pain, less energy, etc. Today he was only able to go a few hours between naps. Yesterday was a much better day.

I gotta go get dinner on the table.

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Wednesday, January 9, 2008 (T1 + 1 yr, 4 months) (T2 - ???)

Well, for good or for bad, Scott’s blood test results improved again. He is now even lower on the list (his MELD score is back down to a 22). We got his MELD score - but no other information. I have sent questions to his doctors - no responses.

I know the doctors are very busy, but “guessing” what all this means is very stressful. But I do know, we are not going to get a new liver until his scores go back up. Maybe there was “blockage” that cleared itself for now. Will it come back? When?

Scott looks better too - and has a little bit more energy. We are trying to get a few projects done around the house. Specifically, there is a corner of the room he sleeps in that never got painted. We were in such a rush to get the room ready, that we painted it before we enlarged the doorway, so that corner has need to be repainted for long time. I am SO GLAD we enlarged the doorway though. Since his hips are bad, he often wheels around on wheeled office chairs. That is much easier with larger doorway. If he has to be in a wheelchair for while…

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Tuesday, January 15, 2008 (T1+ 1 year, 4 months) (T2 - ???)

For once I have some good news. We went to see the Orthopedic doctor about Scott’s hips. Do you remember that the Core Decompression was a “shot in the dark”, probably help with pain, and a slim chance of saving the hips? The doctor said we would know if it had helped if we waited about 6 months and there was no further damage. Well, we went today - and there is no further damage!!

This means that Scott will probably NOT need to go through a hip replacement surgery! He still has some hip pain and does physical theory on a regular basis (that has helped a lot) . What a relief. As the doctor put it, we could use a break.

The doctor also likes to water ski and has offered to take Scott skiing next summer! I would really like to think that is a possibility.

No blood test results yet for this week.

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Thursday, January 17 2008 (T1 + 1 yr 4 mths) (T2 -????)

SNOW!! Finally, we got snow. It started this morning and has been snowing most of the day (recently turned to rain). We only got a couple of inches (I wanted more!), but it did make traffic a mess. The girls did not get out of school because today was a scheduled half day and tomorrow they have off (end of marking period - teachers need to time to submit grades). So they do not get any extra time off. Scott was already home, so they only one who had drive home was me. It was a MESS. It took 1/2 an hour to get out of the parking lot. Fortunately after that I was able avoid traffic on the way home. Since then I have made two trips to Walmart (first time to get bread - second to get milk). Then I had to go to Staples and get a new cartridge for the fax machine so we could get the blood test results for this week. The good news is - nothing in the stores were crowded.

Anyway, blood test results. His numbers got a little worse again. His MELD score is back up to a 25. Not high enough to get a liver, but it does mean he is sick. Mostly it is his bilirubin which has gone up again. And his blood numbers (red blood cell count, white blood cell count, hemoglobin) are all starting to slowly drop. He does not need a transfusion, but it is the lowest it has been since this summer.

We have an appointment with the Hepatologist next Tuesday. Hopefully, we can learn some answers to some questions.

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Sunday, January 20, evening (T1 + 1 yr 4 mths) (T2 -????)

We are enjoying a lovely 3 day weekend. Monday is Martin Luther King’s Birthday. Shannon went camping with the Girl Scouts (in a HEATED cabin! not a tent!). It was a chance for the the girls to get away from homework, tv, boys, phones, etc. (remember - these girls are teenagers). Erin has been doing sleepovers. On Thursday she spent the night with Grandma, on Friday she had a friend over, and on Saturday she slept at another friends house. Scott and I have been working to clean up stuff around here. I have been focusing on getting rid of stuff that has needed to get out of here for a long time. I made one trip to Salvation Army, and I have enough stuff ready to go for a second trip. Much of it is clothes the girls have outgrown and I have been storing in the spare bedroom rather than making the effort to get it out of the house. I hate to admit it - but I uncovered a box of Erin’s old infant clothes. And we maxed out how much stuff we can put out for the trash.

Today and tonight are some of the coldest days we have had this season. It is 9 degrees out there right now. And it will probably get colder by morning. Scott just cannot handle the cold. Most of the windows in the his house are poorly insulated and our heater just cannot keep up tonight. In a perfect world, we would have the $12,000 dollars to replace all the windows that have not been replaced yet, but then in a perfect world, Scott would be healthy.

Hopefully the lab will be open tomorrow and Scott can get his blood work done. My opinion - his bilirubin will be higher yet. His energy levels are so low. He can only work for a few hours a day around the house - so he tries to make the most of the energy he has. He sits in a wheeled office chair and scoots around so he saves his joints and his energy as much as possible. But those few hours have been very productive.

Tuesdays appointment should be a fiasco. The administration assistant told us the appointment would be in the afternoon - but when we got the paperwork, it said the appointment would be in the morning. So we have been re-arranging our day to free up both the morning and the afternoon.

Found out something about MELD scores. The higher the score the more often updated. If the MELD score is 25 or higher, it gets updates to UNOS every week. If it is between 19 and 24, it is updated monthly. And at a MELD of 18 or less, 3 months, and at a MELD of 10 or less, annually . In other words, when Scott’s score jumped above 25 in December, it got updated on a weekly basis, but two weeks ago when it went down to 22 - it went on a monthly cycle. Last week, when it went up to 25 - his official score at UNOS stayed 22. If it were to go up significantly next week, in theory that would not affect his official UNOS score. However, I suspect there are provisions for allowing the doctors to update UNOS to the new score if there is a real need. These update times make me think that someone fluctuating as much as Scott is unusual. That is one of my questions for the doctors. I also found out that you can calculate a score higher than 40 - but 40 is the maximum that UNOS will except. At 40 - the probability of the patient living more than a few days is not very good - and it is likely the patient is not healthy enough to survive the transplant. (FYI: A healthy person has a MELD score of 6). (I know that at a MELD of 15, your chance of dying within 1 year is about 10% - same as a transplant, which is why they don’t usually do transplants to someone with a score of less than 15. The chance of dying from the transplant is would be higher than the chance of dying from the liver condition within one year.)

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Tuesday, January 22, 2008 evening (T1+1 yr, 4 mon) (T2-???)

We went to see the liver specialist today. He was very surprised to see Scott - considering how high Scott’s MELD score got - the doctor was sure he would have gotten that liver by now. But then, Scott got a little better and - no liver. For the most part, the plan is to wait until Scott gets a little worse - and hope he does not get an infection in the mean time.

The MELD score for this week: 24. The ‘average’ MELD score of someone getting a liver is 25 in this area. But take into consideration, many of the ones who get a liver who have less than average MELD score - also get a less than desirable liver. (donor was older, drug user, etc). I hate to admit it - but I am hoping Scott gets worse. Although he is stable, and I am enjoying having him home, I am very nervous than Scott will become infected.

We did find out something interesting. While the average MELD of someone getting a liver for this area is 25. If we were to be dual listed in Memphis, Tennessee as well, the average MELD of someone getting liver in that area is only about 20. This came up because it was mentioned that it is an option to be dual listed in an another area. But not recommended. We would not have doctors who know Scott’s case. And we would have to live there for about two months or more. Memphis was mentioned because it has a low average MELD score - and our doctor knows a couple of doctors that went down there after training with our doctor. We are going to keep it in mind - but not pursue it at this time.

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Wednesday, February 6, 2008 (T1 + 1 yr, 5 months)

It in the past two weeks Scott’s MELD score went down to 23 and this week back up to 24. We cheated and had them put our fax number on the lab order so we get the lab results directly now. So I had the lab results waiting for me when I got up this morning. Although the fax machine is in the room where Scott sleeps (yes, he still sleeps on the main floor since he has such bad insomnia) - the noise does not wake him up !

The doctor said he would up Scott’s official score two weeks ago to a 24 - but I have no idea if he did or not - so don’t know what Scott’s official score is. If he did not change it two weeks ago, this would be about the time they would need to update about now so it might be a 24 anyway. This lack of communication with the doctors is annoying.

This is the 6th week of Scott having a MELD score between 22 and 25. So I guess this is where were will be for a while. My theory - he won’t get any better than this. (My theory) He will stay in this range until he gets worse.

I decided I am tired of putting my life on hold waiting, so I started exercising again. (now if I could a haircut too, I might feel like a real person! But every time I plan something, something goes wrong, so I stop planning !). I made myself a “deal”. I am listening to the new Harry Potter book (again) on my iPod - but only while I am exercising. It has been great incentive, because I have been actually going.

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Friday, February 22, 2008 (T1 + 1 yr, 5 1/2 months)

Scott updating: Yikes, it’s been a while. My brain’s been off dealing with other stuff for a bit, but I knew I owed the world an update. Really, very little has changed as far as my illness. My score this week is a 23, making eight straight weeks at or below the magic threshold of 25. I’ve gotten so tired of waiting that this evening I decided to shift my attitude a bit.

For several months I’ve been thinking from the perspective that a new liver is inevitable, and every week below 25 is a bad thing. I’m now going to try believing that maybe the doctor doesn’t know everything, and a lower MELD score is actually a good thing because I’m beating the odds and getting better. That way if the score goes down it’s a good thing, or if it increases then we’re closer to a transplant (also a good thing, since it will fix the problem). Either way, my stress level goes down, and right now I think the stress of waiting may be doing me more harm than the disease. And Murphy loves to target optimists, so maybe this will get the deed done. I’ll keep my meds and everything else the same, but just try to shift my thinking.

I think that next week will be the end of my supervised physical therapy treatments for my hips. The remaining issues are more stamina-related, and will take long-term healing instead of busting my butt for an hour twice a week. Besides, I always feel more pain and stiffness the day after PT now, so maybe a less intense daily approach will work better. I just need to remember to stick with it.

This week’s satellite shoot down really stirred up some activity and interest for me. For those who don’t know, a large part of my job involves simulating reentry of satellites for most of NASA’s Earth-orbiting spacecraft. I wasn’t directly involved in the analysis of this NRO bird, but I was of course very interested, and tried to keep up-to-date so I could discuss it with friends and coworkers. I didn’t run any simulations on it myself, but I would have been a little surprised if the tank had survived reentry intact. But then, decisions like this shoot down are based on many factors, and while safety was certainly the primary driver, there were other good reasons to attempt the destruction. If nothing else, the $20M spent is probably far less than the government would have spent defending against lawsuits (real or bogus) brought by anyone along the reentry path.

That seems to be all the news that’s fit to print for now (and some that isn’t), so I’ll close. Keep smiling, and I’ll do the same.

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Wednesday, February 27, 2007 (T1 + 1 yr, (almost) 6 months) (T2- ????)

Martha here. Weird week. I am suffering sinus issues. Every year about this time, my sinuses drive me crazy - and if I am not careful, I can get very sick. I use to get bronchitis every winter. So far, it is just a sinus headache.

Anyway we just got Scott’s blood test results for this week. His numbers are up and for the first time since December, he is above 25 (his MELD is now 26). Scott showed me a way to on to the UNOS website and look up all kinds of cool statistics. (I know, statistics, fun??? I must be a class A nerd!) Anyway, as of a week ago, there were 5 folks in this region with a MELD score of 25 or greater. All 5 with a blood type A (as is Scott), and all 5 are registered at Hopkins. Interesting number, there are only 18 (out of 440 in all of Maryland who are waiting for a liver) with a MELD score of 19 or higher. If you are as nerdy as I am and want to check it out go to UNOS (just click on this - it is a link)

I don’t think Scott will get a call in the next week - but if he can stay where he is, I think he might get a call at some point. This sounds horrible to say - but hopefully he won’t get any better.

But my vacation theory is holding. My mom went on vacation to Florida - so I think that is why Scott’s status changed. Fortunately, I don’t think she needs to come home early. Maybe Scott and I should plan a weekend get-away next month, then for sure we would get “the call”.

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Sunday, March 2, 2008 (T1 + 1 yr, (almost) 6 months) (T2 -????)

This was a great weekend for Shannon and Erin. They both participated in the Columbia Mall “Sleep In”. After the mall closes for the evening on Saturday (and it is searched for “stragglers”), they let in the girls scouts - about 3000 of them! The stores are closed - but the food court is still open. The older girls (such as Shannon) set up activities for the younger girls to participate in to earn badges, or do community service, or just have fun! The girls have to be in at least 4th grade to participate (”Juniors”) and most stay up all night (a few of the younger girls get exhausted and take a short nap). The girls go home around 6 in the morning - and go to bed! Both of our girls had a great time! Most girls carpool go the Mall - but some actually rent buses to get there!

I did something I enjoy, but rarely get to do - work on my scrap books! I was talked into go to scrapbook workshop on Saturday where I spent the day working on my scrap books. I actually made enough progress that with a little work today - I was able to finish a project I had been working on off and on for 4 years! Over spring break in 2004, Scott and I went to England for just over a week, since both of us like to take pictures, we had many pictures I needed to do something with! So I have made a scrap book (actually it was so big in went into two books!) to remember our trip. It was a nice trip - Scott was already sick and we knew someday he would need a transplant. He mentioned he wanted his ashes spread over the Uffington horse (the large white, caulk horse cut into a mountain near Uffington, England) so he could finally see it. That inspired me to actually go to England before he got any sicker! So we did! The girls did not go (they were ages 6 and 10). Working on the albums has brought back many fond memories!

This is going to be a bad week for me for stress! I am hoping Scott’s numbers stay about where there are - and we won’t know until Wednesday. Judging by his color - I am guessing his bilirubin is up a little (but I am often wrong). He is also had a lot of trouble stopping nose bleeds - which could mean that is INR (blood clotting factor) might still be up. If the numbers go up - the show could get on the road sooner rather than later. Wednesday seems a long time away….

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Wednesday, March 5 morning, (T1 + 1 yr, 6 months - exactly!)

I just got the test results from Scott’s blood test results on Monday. I hate it when I am right. His score went up. His clotting factor score is VERY high (meaning if he gets cut or a bruise - his body has trouble stopping the bleeding) - and his bilirubin is up. The good news is his kidney function is not too bad. His MELD score is now a 30. He must be at the top or near the top of the list.

Slight correction - he IS at the top of the list. As I told Scott’s parents when I called them, hang on tight - the roller coaster ride is beginning.

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March 6, 2008, evening (T1+ 1 yr, 6 months)

6 months ago today - Scott had the hip surgery called a “bone decompression”. It is considered a success. Although his hips still hurt, they have not deteriorated as expected.

1 year, 6 months and 1 day - he had his first transplant. It has been a long strange trip since then.

Anyway, we have gotten no “calls”. I have decided to stay home for now so that I am closer to him in case we get “the call”. We have an appointment with his liver doctor tomorrow (nothing to do with the impending surgery - this was scheduled in January).

Not much else to say - we are just here waiting….

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March 11, 2008, afternoon (T1+ 1 yr, 6 months, 6 days)

Scott here: Good news - we got a preview of the blood test results, and my score has gone up slightly to 32. That means that I’m probably still number 1 for liver transplant in the state of MD, and possibly the whole region (for blood types A and O, at least). No one seems to know why the availability of livers has dropped off for the past week, but there have been no transplants done locally since at least last Thursday. Sometimes it happens that way - I remember at least once when they did three in one day, then none for a few days. At least this time I didn’t suddenly get just a little better, and drop out of the top tier.

I’m hanging in there (as if I have a choice). This morning I even snuck out to go to Goddard for an hour or so, and deliver a short presentation. I was in contact the whole time, and it went well. Work has been a great normalizing force for me. In general I just have a bit more fatigue than usual, and a lot of itchiness to contend with. Both are normal side effects, and it’s still hard to comprehend that I’m “leasing the farm with an option to buy”. I just don’t feel THAT sick, which I guess is a good thing. So we continue to wait….

If you have difficulty understanding why organs are so rare (as did I), I came across a statistic the other day which helps put it in perspective. Of all the deaths that occur in hospitals, apparently only 1% of the victims are eligible to donate their organs. Add to that the refusal of some families, or lack of expressed wishes, and the number can drop off by half very quickly. There are currently all sorts of conditions which can prevent donation. For example, cardiac death (as opposed to brain death) causes some organs to become unusable before the recipient can get to the hospital. Any cancer which has entered the blood stream is likely to be passed to the recipient. Same with diabetes. Typically donors are only considered up to age 70, though that is being reconsidered for elderly recipients. So it turns out that even in a city with such a high murder rate there is still a shortage of usable donor organs. This makes it a little easier for me to understand, though it still stinks.

Keep smiling, and I’ll do the same

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March 13, 2008, afternoon (T1+ 1 yr, 6 months, 8 days)

Scott updating.

A-H-H-H-H-H! Ring, you stupid phone!!

That about sums it up. One thing that I have noticed over the past couple of days is that I am starting to sleep a lot. Where I was getting only about 6 hours on a good night, I am now sleeping as much as 12 hours at night, and another 3-4 hours in naps. Unfortunately that doesn’t leave much time for work, homework, visiting with the family, and chores. I’m starting to take partial sick leave every day, just because I don’t have enough conscious hours in a day to do it all. For the first time ever, I’m starting to get just the very slightest bit nervous that a liver won’t be available. It does no good to think about that, though, so I try to absorb that thought and move on as quickly as possible. A positive attitude has gotten me through so much in the past five years, and is probably more necessary now than ever.

Keep smiling, and I’ll force my self to do the same

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Thursday, March 13, evening.

Martha updating.

Still no phone call!! He has been at the top or very near the top for over a week. The stress of waiting is getting to me (and him)! I feel like I can’t go far from him because he can’t answer the phone - and if he is asleep, there is no way to contact him via the sidekick as well. Since he sleeps more than 50% of the time…. So tomorrow if all goes as planned (and we still have not “The Call”) my mom is coming here to babysit the phone so I can go in for a few hours to do timesheets etc. Fortunately this weekend, I can leave the kids home to answer the phone or go wake their father, if I need to run an errand, or go exercise, etc.

On a prompting from my mom I looked up some statistics. There were 103 liver transplants done in 2007 (109 in 2006) in Maryland. (59 of them done at Hopkins last year - and 69 in 2006). That is an average of about 2 a week, but we have not had any transplants in over a week. (Looking at just Hopkins, there is an average of over 1 per week). I know they usually come “in waves” but this is pushing my patience. It is possible one of the other patients became sicker than Scott and got a transplant, but I think I overheard someone say - there has been no liver transplants.

The good news is Scott is doing as well as can be expected. He is sleeping a lot (more than 12 hours a day), but he is running no fevers, no bleeding (except nose bleeds), - both of which are very real possibilities and possibly fatal. He spends his little bit of energy working from home. In other words, even though we are both in the house, we don’t see much of each other. Sigh. Hopefully soon….

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Friday, March 14, 2008 evening (T1 - 1 yr, 6 months) (T2-???)

Martha writing with Scott doing major revisions.

A surgeon named Dr. Montgomery from Johns Hopkins called this evening. Apparently the primary surgeon (Dr. Maley) that normally sees Scott is “unavailable” for the next 10 days (don’t bother asking - we don’t know exactly what that means either). Scott is now number 2 on the list, and Dr Montgomery (who is Dr Maley’s supervisor) said that Dr Maley is the only doctor who feels comfortable operating on Scott. Scott is apparently considered MUCH higher risk than I knew (due to infection risk and prior surgeries) - and the other doctors (and most other transplants centers) think Scott is too high risk to operate on! (we’re not quite sure what would happen if things take a rapid turn for the worse)

In a way, it’s sort of comforting to know that they will only go to the ‘A-Team’, unless absolutely necessary. Remember also that the risk is not only to Scott, but to the entire liver transplant program. A bad incident (and some second-guessing by others) could restrict or suspend transplants for dozens of patients. In that way, it’s sort of like a shuttle launch; although Scott typically has nothing to do with that part of NASA, another failed mission could very well shut down the entire agency, affecting over 100,000 people. We see our personal risk, but there is more that goes into the decisions than is immediately visible.

So they have asked to unofficially take Scott off the list (basically skip over him) for the next 10 days (after Easter) until Dr Maley is available again. I guess surgery is like being a fighter pilot (like my Dad) - if you don’t feel confident flying the plane - you should not be up there. Dr Montgomery is going to consult with the hepatologist that usually sees Scott to make sure it is ok to wait. But I guess we don’t have a choice.

This is going to help me sleep at night. NOT.

But at least I don’t have to worry about “the call” for a little while; we can live a semi-normal life for the next week and enjoy spring break and Easter with my family. In the meantime, Scott is getting some advice from the team as to how best to prepare for the procedure when it does happen (something that has been lacking this time around).

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Tuesday, March 18, early afternoon

Martha Here. Apparently Dr Maley may not be available for a while, longer than Scott can wait. We are being HIGHLY encouraged to go to a different transplant center - out of the area. Once again, Memphis was mentioned as was the Mayo Clinic in Jacksonville, Florida. In either case we would go down there to live until the transplant. Then I would stay down there with him as much as possible, which could be months. This would mean leaving our home, our jobs, our children, up here in Maryland without us.

I will update later when I know more. If anyone wants to volunteer to help out, cats, helping my mom with the kids, advice, perhaps even something I don’t even know about - SPEAK UP!

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Wednesday, March 19 afternoon

Martha here.

We have officially ‘applied’ for Scott to be a patient at the Mayo Clinic in Jacksonville, Florida. (Interesting info, if we go down and the surgery is after April 12, he will be at the brand new, start of the art hospital that is being built. It even has special surgery suites designed just for transplants. ) We are also looking into going to Memphis, but only if Mayo says no or takes too long to make a decision on whether or not they will take him as a patient. That decision is suppose to take 5 to 10 business days. Meanwhile, not much more I can do in that area at this time. I am trying to be pro-active, without being a nag.

I am trying to get as much little things done as possible. When I slow down and think, I tend to think about all the things that can go wrong - and that is not a good thing. So I am keeping busy. Taxes are done, started a list of stuff to do or take with us, getting together stuff so my mom can take care of the kids, etc. Aghh. Very stressful.

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Friday, March 22 , afternoon.

We went and talked to one of the surgeons at Hopkins. The bad news is - they were doing a liver transplant when we got there. If circumstances had been different, that liver might have gone to Scott.

Dr Maley is considered their “high risk” surgeon, meaning he takes on the more difficult cases such as Scott. Scott is high risk for two reasons, he is being re-transplanted and he has a high risk of infection. Unofficially, transplant centers can be divided into two catagories - those that can do high risk cases, and those that can’t. Since Dr Maley is unavailable, Hopkins must send their critical, high risk patients away. Going with just high risk centers, narrows our choices a LOT. It is now about 80% certain that we will go to either Florida or Tennessee for this transplant. So we are getting ready to go, we just don’t know where! We are being encouraged to pursue both Tennessee and Florida and go with the one that will 1) take Scott as a patient and 2) the doctors give us confidence in them.

We am coming up with different description for our predicament.

“A two-story earth mover ran over our-four leaf clover”.

“A herd of black cats pushed us under the ladder and broke the mirror on our head”. Maybe you can come up with some good ones! We have to keep laughing so we don’t have to cry!

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Saturday, March 22 (T1 + 1 yr, 6 months) (T2 - soon, hopefully)

One major step forward. I talked to a doctor in Memphis who thinks everything should be a “go”. He wants to to come down there for an appointment on Friday. We are going to leave early Tuesday, and arrive late Wednesday. Thursday, will be any tests that need to be done or just settling in. Friday morning - appointment. Apparently he will be listed almost immediately after that. So I am going to be sick of BBQ and Elvis by the time this is over.

So we are frantically running around, packing, running errands, getting car ready (the doctor wants to fly - but we are going to drive so we can have a car when we get there). I am taking my laptop so I can hopefully update the website periodically and let you know how our adventure is going! We have not given up on Florida - so who knows, we may head down there too at some point!

This “Daily Status” is getting very long, so look for a new one soon - “Daily Status - Memphis”.

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