Daily Status 3 -> Feb 2007 - Jul 2007
Tuesday, Feb 13 (T2 -???)
Scott has been offically re-listed on the liver Transplant List with a MELD score of 19. Details on end of Daily Status 2 page.
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Wednesday, February 14 evening (T2 - ????)
Happy Valentines Day. Not the most romantic evening - eating hospital food in a hospital room (with no privacy what-so-ever) - but at least we are together. 
The ice storm was bad enough that I decided not to chance it and stay here at the hospital another night. Thanks go to Sarah for feeding the cats, so I did not have to come home, and Grandma for suffering cabin fever and taking care of my kids so I could be here with Scott.
Very little new information about Scott. We are in a holding pattern. All of his blood tests results still look good. But Scott did run a very mild fever most of the day. By hospital standards it is not really a fever (about 100 degrees), but it was consistant enough to be noticed. But is down again now.
Be sure to read Scott’s comment under “COMMENTS 1″ (it is the last real comment in that section”)
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Thursday, February 15 evening (T2 - ???)
Scott is coming home tomorrow!! I just got home for the first time in 3 days, so I have a lot to do so this will be quick. Since he appears to be stable for now, they believe that he will have less risk of infection at home than at the hospital, so he is coming home to wait. He is still a candidate for a new liver, but it will not happen immediately.
His MELD score will remain 19 for the next three months - hopefully he will either get completely better (unlikely) or get his new liver by then. They must re-evaluate him at the 3 month mark and his score will most likely drop.
I find the whole thing very frightening but good. I will give more details tomorrow.
BTW - THANK YOU to whoever shoveled our driveway. That is a big help and a load off my mind.
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Friday, February 16 morning (T2- ???)
Scott just called. He is probably not coming home today. Apparently one of the antibiotics he is taking needs to be tested (blood test 15 minutes before and 15 minutes after each time they give him the antibiotic). It is not at the right level, so they will need to “tweak” it - probably through the weekend.
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Friday, February 16 evening (T2 - ???)
Scott should be coming home tomorrow. They think the antibiotics are at the right level, so he gets to come home to wait for a new liver.
This is the time for lots of prayers. Our chances of getting a new liver before our 3 month window - or the infection gets worse, are “not great, but not terrible either”. We have had string of bad luck and we will need lots of good luck to get the liver in time and have a successful transplant. We belive prayers and good wishes got us out of a bad spot last week, so maybe it will help again. Scott is not a strong believer in prayer, but I will take whatever I can get if it will get him healthy again.
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Saturday, February 17 evening (T2 - ????)
Scott is home.
Now that he is home, we can compare his hearing to before he went into the hospital - and it is much worse. Talking on the phone will be difficult at best - but in person he can use his amplifier. His eyes are not great either. They do not focus together - but hopefully they will improve when he gets off the antibiotics. But that won’t be until he gets a new liver. So I guess he still can’t drive.
We are trying to get settled into a routine as quickly as possible. We are going to have a lots of medications to deal with, house to clean (I have not been home enough to clean in weeks), children to deal with (they are currently fighting), cook, etc.
We welcome and encourage visits. But I am sorry if the house is a wreak, it will take time to get it back to a presentable state again. (Martha Stewart I am not ) I also will welcome assistance in all kinds of things. Helping me catch up with cleaning, house maintance, if it snows again - shoveling!, keeping Scott company if I need to go to work or shopping, etc.
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Monday, Feb 19 evening (T2 - ???)
We are slowly getting back into a routine. It is very interesting - when Scott first gets home and we are trying to settle into a routine again, the girls must “test” our limits. I am sure if we talk to child experts, it is perfectly normal, but it is frustating to ask them to do something, and have them “experiment” to find out if we will are serious. Grant me patience. I keep telling myself - they are going through a lot, too. It is tough enough being a kid (especially one just starting the “estrogen tsunami” roller coaster) and having a Dad as sick as Scott is, and a Mom who isn’t around for them as much as she should be.
Anyway, there is very little change in Scott’s condition. This is good, I guess. Lots of small aches and pains, lots of ascities (fluid buildup - this is apparently a symptom of the liver not working as it should), and very tired. But no real fever.
The only unexpected thing is picc line is not working right. He has a “double luminary” (two valves for geting blood out or medicine in), but one of them is not working at all - and the other is tempermental. But at least it is still working. We will be up the creek if it stops too.
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Tuesday, Feb 20 afternoon.
Sure enough, the other luminary stopped working, too. We are off to the hospital to have it replaced. Believe it or not, he must be admitted for this to be replaced. He MIGHT still come home tonight, but I not holding my breath.
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Tuesday, Feb 21 evening (T2 - ???)
Surprise, surprise, they did not let him come home. It took a long time to get a bed, and by the time we did the picc line team had gone home for the day. Sigh. But they will put in a traditional IV so he can get Scott can get his medications. But as of 6:30 pm he had still not gotten his 10 am antibiotics.
Hopefully they won’t find a reason to keep him more than a day or two.
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Thursday, Feb 22 - morning (T2 - ????)
Someone asked what picc line stood for - peripherally inserted central catheter.
Scott is still in the hospital. Not because of anything bad. They did get the picc line cleared of clots, and did not have to replace it. But at some point in the near future they decided Scott needed to have an MRI to look at the abscess, get more blood, and get tapped. We had choice of keeping Scott in the hospital and doing these things yesterday and today or doing them as an outpatient.
The MRI normally is not a big deal, but our doctor insists on using Hopkins radiology instead of the radiology lab our insurance company uses. For one thing he can view the images himself on the computer, not just the hard copy of the images the radiologist sends him and the report. They can also compare it to other images of Scott’s liver much easier. So as an outpatient the doctor has to appeal to the insurance company to get it paid for and it is a royal pain in the neck. Doing it as an inpatient is much simpler. Getting blood as an inpatient is much simpler as well.
We talked to Scott’s hepatologist yesterday. We have seen the attending liver doctor (Dr Koteish) that normally covers the hospital several times, but for whatever reason we got to see Dr Thulavath yesterday. I think he is nervous that the MELD score of 19 won’t get Scott a liver soon enough. He did not say this, but I think he made the decision right after he got the list of problems Scott has as a result of the antibiotics (eyesight, hearing, etc). So he is going to appeal to UNOS to try to raise Scott’s MELD score. (UNOS - United Network for Organ Sharing - they oversee who gets organs - and who does not. When Scott was put on the “list” - they have the list, not the hospital. They also designed the MELD score system to try to a prevent abuse by physicians.) It is a “shot in the dark” but we don’t know unless Dr Thulavath tries.
The good news is the doctor was surprisingly pleased with how strong Scott is getting. They often see him in bed, and don’t realize he can, and does, get up and walk around a lot. But Scott happened to have been out of bed when the doctor came in yesterday.
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Thursday, Febrary 22 evening (T2 - ???)
Home again, home again, jiggity jig.
The doctors are hopeful that Scott will be home for a while this time. Their only hope for a long term cure is getting a new liver. Let us hope they can make it happen soon enough.
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Friday, February 23 evening (T2 - ???) (T1 + 5 months, 18 days)
We had a pleasant day. Not much happened. No fevers, no clots, no appointments, several naps. He even had time to get a shower in. (He needs to rest before and after - so we don’t often have time to squeeze in a shower. Fortuantly he is too cold to sweat, so odor is not an issue.)
I added a new photo to “Various photos”. Warning, it is scary….
I am willing to take suggestions for any photos ya’ll wan’na see. (can you tell I once lived in Louisana?) . I tried again today, the wedding photo may not happen due to technical difficulties.
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Sunday, February 25 (T1 + 5 months, 20 days) (T2 - ???)
Once again the weather is more interesting than Scott’s condition - and that is good for now. He is stable, no fevers, no unexpected problems. He has been taking a VERY long nap - I bet he will wonder why he does not sleep well tonight.
However, his hearing is continuing to slowly deteriate. Without his hearing amplifier, he can barely hear me when I am talking as loud as I can only inches from ear. With the amplifier, he is starting to miss stuff as well - especially if more than one person is talking at a time (not that that EVER happens in a house with 3 females ) He can’t really talk on the phone or watch regular TV. Fortuantly, we have headphones so that the TV sound can be pumped directly into his ears. But the volume must be so high that is too loud for us - so we must turn off the sound to the regular speakers - so we can’t watch TV with him 
I have been making a big effort to cook decent food for the family. He was beginning to hate the hospital food they were serving him, so I want to make sure he remembers what good food tastes like. I even made breakfast - which is rare for me.
On to the weather - we have another winter storm. Originally they called for an inch of snow and then ice. But it continued to snow and we have about 5 or 6 inches out there. We still may get ice on top of that (oh joy). But girls are going to go out and shovel (and play!) in the snow right now. I doubt they will have school tomorrow at this rate. I sure hope there is no reason to head to Hopkins today, ’cause I am not sure we would make it.
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Monday, Feb 26 evening (T1 + 5 months, 21 days) (T2 - ???)
Again, nothing too exciting. I bought some Sudoko puzzles to do at the hospital - hopefully during the surgery. I also got a white board so I can communicate better with Scott. The amplifier does not seem to be enough anymore.
Both Scott and I are getting depressed on how bad his hearing is getting, and how quickly it is deteriating. What little hearing he has left may not make it to the surgery.
I wrote a summary of everything to do date. If you are confused - it might help to read it. I also added a picture - you might try finding it (think of it as a treasure hunt).
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Thursday, March 1 morning (T2 - ???_ (T1 +5 months, 24 days)
Scott has been out of the hospital 1 week now. I told my father-in-law I wanted at least one week at home to spend some time with him and the girls before I next crisis. I finally got that. We have had no fevers or anything life threating. However, Scott’s hearing is slowly deteriating. They lowered the dose of medicine as a result, but that will probably just delay the inevitable, total hearing loss. Currently he can no longer use the phone, but if you come for a visit, he can communicate - even if he has to get out his white board for you to write your message.
The waiting game has gotten to both of us. We both getting a little short tempered - especially with each other. Scott is not sleeping well at night - then sleeps most of the day. That is not helping. I am hoping for a miracle so we don’t have to wait much longer ….
Since there is so little change in his condition, I am not updating the website as often. But I am checking the website everyday to read your comments. They do help relieve the tension around here. However, tomorrow we do have a doctors appointment. I will update afterwards to let you know what the doctor said.
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Saturday, March 3 afternoon (T1 + 5 months, 27 days) (T2 - ???)
We had our appointment with the liver specialist yesterday. He wants to stop the antibiotics in two weeks, which surprised us. His rational he does not want for the bacteria to become resistant to these antibiotics as well. But we are still nervous. We will have an appointment with the Infectious Disease team that prescribed the antibiotics first though, and he will also have a look with another MRI.
The doctor has appealed to the UNOS (United Network for Organ Sharing - they decide on who gets organs and who does not) to get us a higher MELD score. Apparently they only met once a month to decide on appeals - and are “turning down, more and more appeals”. Apparently a score of 19 will not get Scott a decent liver. (We could get one if we were willing to “settle” for one that is not in good condition - and has been turned down by other candidates. This was not recommended.) When I asked what we will happen if they turn us down - he said “keep trying” (I did not find that very comforting.) Perhaps he is expecting for Scott to deteriate soon.
We have a long list of appointments and followups we need to do in the next few weeks. All of which require referrals, and paperwork. Oh joy. Of course, nothing can even be started until Monday… The good news is, Hopkins has agreed to pay for Scott’s hearing aids. I could not justify spending that much money on something that costs as much a morgage payment. Hopefully hearing aids will help. The amplifier is barely able to amplify our voices enough for him to hear us.
Having to write notes to him has some advantages. Shannon (and I) got in to a “disaggrement” - and we were both yelling a lot. But Scott sat Shannon down to talk to her - and made her write down what she wanted to say. It was impossible for her to yell - and harder to say something she would later regret saying. It worked. But will she go for it when her Daddy can hear her?
I added a new photo under various photos. Also, we asked about the article that claims asprin can help prevent hearing loss due to certain antibiotics. Our doctor was less than enthusiastic. But he did suggest we talk to the “Ear,Nose, Throat” specialists about it.
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Monday, March 5 evening (T1 + 6 months EXACTLY), (T2 - ???)
Not much to report except it has been exactly 6 months today. We are continuing medications and continuing to be very fatigued. He often has insomnia at night which does not help him get things done during the day.
Off to the store to try to get more of his medications…..
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Saturday, March 10 evening (T1 + 6 months, 5 days) (T2 - ???)
Not much change in Scott’s condition. He is getting a little stronger - and a little deafer - each day. He rarely even bothers to use the amplifier anymore because it does not help enough to understand us. We have to rely on the write on/wipe off boards to talk to him. In the car, we just have one sided conversations - he talks, I just nod or shake my head.
For those of you not living in Maryland. We had our first sign that spring may not be far away. It was warmer today than it has been and now it is raining - and not a miserably cold rain. (Right now it seems like a really warm rain after the freezing rains we have had.
The girls and I went to go see “Bridge to Terabithia”. It was very good. The girls really loved it, but (no surprise to anyone who knows me) I cried my eyes out. Fortunately I had enough sense to take some tissues.
I am trying to teach the girls how to crochette. Not very successfully… yet.
Two of Erin’s teachers came over after school on Thursday. One of them had been Shannon’s teacher too. They knew all about Scott and the year we have been having and wanted to give the girls something from all the teachers to help cheer them up. Lots of really neat things to do! Markers, books, crochette hooks and yarn, even scrapbook kits. They had so much fun going through the basket of goodies! Thank you!
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Sunday, March 11 evening (T1 + 6 months, 6 days) (T2 - ???)
The “Chia Pet” reporting this time: As Martha said, sound just barely gets in at all these days; mostly low frequencies, almost never the higher pitch speaking frequencies. I am hopeful, though, that the hearing aids might be able to help - since I do still have a small ability to hear the high pitch stuff, maybe they can build on that. In the meantime I’m getting better at reading lips, have finally configured the closed captioning on the big TV, know a very few basic ASL signs, and rely heavily on the whiteboards as backup.
Work is actually going pretty well. I am able to do most of my project consultation via e-mail, so the hearing problem hasn’t slowed me down much; face to face would be better, but… The strange thing is trying to type on a keyboard when one of the three fingers you use for typing is numb, but hurts if you press too hard. If I miss a letter on the left side of the keybord once in a while, ut me a brek. Anyway, word is getting out that I’m available for work again, so demand is picking up some, too. Now if I could only stay awake in the afternoons…
My status is about the same as usual: dizzy, deaf, and no depth-perception. We’re seeing lots of doctors this week and next who might be able to help that out some. I’m also redeveloping a taste for bland food (minimizing sodium intake is critical for me). Anything with much salt in it at all tastes bad to me, so I avoid it. Otherwise, I’m just hanging in there. I still greatly value visits, even though communication is a pain in the butt at first - after about 20 minutes, though, it’s almost normal again. I’m learning alot along this new path, though I do so hope that it is temporary. I’m writing down some of my thoughts, so that if my hearing and sight do come back, I will have reminders of what it was like.
good-night for now, Scott
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Tuesday, March 13, morning (T1+6 months, 8 days) (T2-???)
The PICC line is giving us problems again
One of the lines going into the PICC line was not working great all weekend, and after the blood work yesterday morning - it stopped working entirely. I got some medicine from the nurse to try to unclot it. But in the processes - it sprung a leak. Unfortunately, this makes it more vunerable to infection, so the nurse is calling right now to see if he needs to go and be admitted into Hopkins to have it replaced.
Actually, this does have a silver lining. The other side is working so he can still get his medicine. Also, last week his blood numbers were low - but not enough to justify getting blood as an outpatient. But they will probably will be this week - and it will be a WHOLE LOT easier to get blood as an inpatient than as an outpatient. We also have several other appointments as Hopkins this week. Some of them may be taken care of easier as an inpatient than as an outpatient. Will update the site later when I know more.
Chia-pet here: Update - she just handed me my toothbrush. Guess you know what that means…
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Tuesday, March 13, evening (T1+6 months, 8 days) (T2-???)
Scott is back in the hospital. But he seems fine other than the picc line. But the picc line is not repairable. It must be replaced. As usually, the admittion process took so long that the picc team had long since gone home by the time anyone official declared the line not fixable.
Anyway, while we are there we are going to get a “tuneup”. Get the MRI out of the way, get the blood he will probably need, etc. Fortuantely, he is not sick. Hopefully, he will stay that way.
The downside is communication is very difficult. He can’t hear the doctors at all, he can’t ask for sign language interpreter since he he doesn’t know sign language. We have the white board but it is difficult to write everything down. We both have a bad habit of letting me “take over” the conversation, and he ends up getting let out. I need to make a bigger effort to write everything down so he can participate. He is getting fitted for hearing aids on Thursday, hopefully that will help.
Another problem is he cannot use the phone at all. If need something from me - he can’t call. I have encouraged him to “text msg” me - but he has never done a text message before! He use to call me late at night just before I went to bed to let me know what was happening. Can’t do that now. Fortunately, I am not worried that he is running a fever or something. Hopefully, Fate will not see this as a challenge to make our life more “interesting”.
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Wednesday, March 14, evening (T1 + 6 months, 9 days) (T2 - ???)
As expected Scott got a new picc line today. He also got 2 pints of blood. He was going to have an MRI this evening. He saw the liver doctors who were disappointed on bad his hearing is.
Tomorrow he has an appointment at Outpatient part of Hopkins to get fitted for hearing aids as well as appointment with the opthomogist (eyes). It took a while to get the appointments and I was not about to reschedule them! He will probably get sent home tomorrow some time.
He had two sets of visitors. Our friend Chuck came to see him. His mother and stepDad also visited. While Scott was getting his picc line (they kicked us out!) we all went down to a local market for lunch and a bit of adventure. It was a lot more interesting than the cafeteria. And the weather was spectacular. Technically still winter - but it was over 70 degrees! But Winter is going to have another laugh at us. Apparently there is snow in the forecast again….
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Thursday, March 15 evening (T1 + 6 months, 10 days, ) (T2 - ???_
Beware the Ides of March! We had an appointment to get Scott fitted for hearing aids. They did not bother. His hearing has deteriorated enough that hearing aids won’t help. He is a candidate for Cochlear Implants. But we are not going to pursue it very far until after he gets his transplant and he is healthy. Until then - anyone know someone who teaches sign language?
They did an MRI and looked at the abscess in his liver. It has gone from a diameter of 2.3 cm to 1.9 cm. So it is getting smaller, but not gone yet. So they are going to continue the antibiotics for at least two more weeks.
We also had a marathon appointment with the opthalmologist. (eye doctor). Both eyes have little bleeding in them due to “classic chronic illness”. Most likely his low platelet counts. The good news is it will probably get better when he gets better. The better news is that his right eye is still 20/20, with only a very small bleed. I am going to ask if we can use this as another reason to raise Scott’s MELD score. Shot in the dark, but we don’t know until we ask.
After the long eye appointment (3 1/2 hours) we got to go HOME!!! All the paper work was done and we signed off and out the door we went - so fast we forgot to have his IV removed. OOPS!!
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Saturday, March 17, afternoon (T1 + 6 months, 12 days) (T2 - ???)
Happy Saint Patricks Day! Scott is home and doing fine. The picc line seems to be working fine again. No fevers or other scary things.
We talked to a specialist about Cochlear Implants as an assist to help with communications. Scott wants to wait since he is nervous about complications such as infections (geee, I wonder why he is so parnoid…) . But if we wait, since his hearing is now completely gone the nerve that is used to carry the sound information to his brain will probably start to atrophy. Also, I am more frustrated with communication problems than he is. If he has something to say - he can say it. I like to talk and explain things (can you tell!?!) - and now I can only give him the most important details on the white board. Anyway, it will not fix everything. Since he will be getting an interpretted electronic signal sent to his brain rather than interpretted sound waves - he will hear things radically differently. And he probably won’t hear clear enough to understand everything without relying on lip reading some. Apparently the success rate varies dramatically with each patient. Only if it is quite good will he be able to understand speech without using some lip reading (aka using a telephone).
It will be many appointments before they will do the surgery - and then he will have to wait a month for it to heal before they will turn on the part where he can actually hear. Then it will take months of “tweaking” and “adjusting” before he gets maximum benifit from the device. Big decision.
But all the appointments - I did find some good communication ideas. If I can get to a computer - I can type out what I want to say (in a big font) and he can read it over my shoulder. I type much faster than I write (and neater too).
We are also going to give the “Messanger” program a try. That is where you can instant message someone - aka he is on this work computer - I can be in the living room computer and send him a message “Dinner in 5 minutes!”. It will take some getting use to - and even then may not prove that useful. But we shall see.
There is also a TTY relay service available through the internet. Scott can contact the service - they would call a number and verbally tell the person what Scott is typing - and then type what the other person says back to Scott. We don’t know how someone would use the service to call Scott yet though - and he has not tried it. But I feel better, that if I go to work, he can call me in an emergency. But with all the appointments, trips to the hospital, and calling doctors and nurses - I have not had time to go to work lately.
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Wednesday, March 21, early morning (T1+6 months, 16 days) (T2-???)
Happy Spring Equinox! We had a bizzare sleet storm over the weekend - but now the weather has warmed up, the snow/sleet has melted, and the buds on the tree are saying “is it really spring this time? Or is it another spring tease?”.
The picc line continues to work well. Right now, Scott is upstairs taking a shower. We have gotten into a routine with his medications that works fairly well. He is working some from home. Today we are going to Hopkins for a parascentisis - tapping the excess fluid off his abdomen. (I wish I could lose weight that quickly!) He is very uncomfortable and bloated, but in theory he should feel better this afternoon.
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Friday, March 23, early morning (T1+6 months, 18 days) (T2-???)
I could not sleep so I thought I would update the website. I may get partway through and go back to sleep, so don’t be surprised if I leave you in mid-sentence or something weird. If you check this Friday morning - you may want re-read it later, after I have edited when awake.
We went and talked to the actual ear/nose/throat doctor about the Cochlear Imlpant. He decided that Scott is too fragil a case to do at this time. The risk of infection, slow healing ability, timing with the transplant would increase the risk of the implant not working, and having to be removed. ( This would be a bad thing.) But he thought there was some chance that a little of the hearing may come back. Not a great chance, but worth hoping for. He also talked to Scott about how his balance is affected, chances of that coming back and some of the stuff he do to compensate. That also may come back someday. Interestingly, the doctor’s undergraduate degree was in engineering - and Scott understood what he was saying (ok, typing) better than any other doctor. Explained the way the ear worked, what the medicine was doing to it, etc.
It was highly recommended that Scott get a phone that could do texting easier than a regular cell phone and rely on texting to communicate with the outside world (and me too) rather than a voice phone. It was recommended by someone who is deaf and by the audiologist and doctor that we get the “Sidekick” by T-mobile - and not even get a voice plan. Since I had just renewed my 2 year contract with Cingular, I am kinda stuck with that. So I decided to get both of us new phones that do unlimited email, and texting - but no voice! We had to get two phones since the main person he needs to communicate with is me - and since it is unlimited I can even use them in the house to tell him something. We have two weeks to try it and see if it helps.
So if you are the type that text messages, please put our new numbers into your system and send us a message. Scott’s 443-538-9170. Mine is 443-538-9172. If you send us a text msg, then we know your number and know we can text you back. Remember to voice call me, use my old cell number (send me an email if you want it). Don’t bother with Scotts old phone number - he can’t hear it… Eventually you can even send us emails to our phones. If you have access to a computer with web acess you should be able to go to t-mobile.com and send text message to us also. I will send more details and we figure them out - and if we decide to keep the phones.
News on liver transplant. Remember I mentioned the doctor had appealed to UNOS to get a higher MELD score so Scott could get a liver sooner? Well, apprently we got the appeal and his MELD score gets 3 “bonus” points. We are going to talk to the doctor later this morning and I will confirm more details. But on Wednesday when we saw him for the the parencentis (tapped 5 liters of fluid off the abdomen) the doctor seemed to think that we would get the new liver anytime in the next 3 months. But he did not have his notes with him and some details he was not clear about.
I am going back to bed - more info later….
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Sunday, March 25, late evening (T1+6 months, 20 days) (T2-???)
Scott updating today, as Martha is exhausted from a very active weekend. We saw the liver specialist on Friday; nothing major to report, except that he wants to discontinue both antibiotics in two weeks. This terrifies me to some degree, as I credit the Amikacin with saving my life by keeping the abscess under control (and actually shrinking it some). If I redevelop the bloodstream infection, I technically need to be removed from the waiting list, which would be a bad thing… But the Transplant Infectious Disease specialist may overturn his instructions on Thursday; she’s pretty conservative, and tends not to change what’s already working.
This weekend we were able to go to a Dalhraidian event in southern Maryland (with some accomodations), and saw many good friends. We welcomed the arrival of Spring just in time for a gorgeous day on Sunday. Today happens to be my 43rd birthday as well as Maryland Day, and we were able to make a side trip to St Mary’s City to see the recreated buildings and performers there. That’s something I have always wanted to do, and to have a beautiful day out with my family just made it that much better. Hopefully we’ll get some of today’s photos up on this site soon.
That’s about all I have for now. Things are just stable - lots of big and little things to deal with, but I’m still looking at the green side of the grass! This evening on 60 minutes there was a comment from John Edwards’ wife Elizabeth regarding the return of her cancer that when you get that diagnosis you make a conscious decision to either keep doing what you were doing yesterday, or to start dying. This really hit home with me, and I hope to just keep doing what I have been until this is all settled. As my grandmother used to say, I want to stick around as long as I can - I want to see how this whole thing turns out!
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Thursday, March 29 (evening) (T1 + 6 months, 24 days) (T2 - ???)
Things were starting to look better, and although I knew we had a tough time ahead, I thought the fevers were behind us for now. But we went for a follow up appointment with the infectious disease folks so we know when to stop the antibiotics - and he starts running a fever! Chills and all. We were hoping it would go away like a figment of our imagination, so we went to lunch and checked it after lunch - it was worse. So he go admitted.
Details - his fever peaked this evening at 104 degrees. They are doing blood cultures, xrays, etc. So we don’t know much yet. Yes, I am very nervous but I am hoping it is something easy to fix like an infected picc line. If it is his liver again…
It has been interesting with him at the hosptial since he can’t hear virtually anything. I have been acting as “interpreter”. Fortuantly, we figured out we can have the doctors bring in a portable lap top and the doctors can type in what they want to say/ask. The first doctor was hesitant at first but was quickly convinced when it worked quite well. It made me feel much better about leaving him, knowing they can use the computer to type messages to him that are too complicated for a white board - or gestering.
Are you interested in contacting him (or me)? We have new “cell phones”. (We had just re-newed our contract with our old company before he lost his hearing. I looked into adding the features onto our existing plan - out of my price range, since we wanted to upgrade to phones with full keyboards - and we would have to pay full price) So someone who was hearing impaired suggested we look into the T-mobile Sidekick. Apparently it is very popular for the hearing impaired since it is easy to type and you can get it without voice for not unreasonable price. If you get it without voice (I already had a voice cell phone - and he can’t use the voice part), it is not too expensive. Anyway, it does email, text messaging, instant messaging, and even web surfing!! Scott’s email for this phone is gallen1@tmail.com and to text him send it to 443-538-9170. Mine is rheannon1@tmail.com and my texting number is 443-538-9172. If you go to www.t-mobile.com/messaging you can send us a text message for free (but we cannot respond).
We can even update this website from our phone - but it will be cumbersome to do normally, so I will have to be desparate to do it. I will still have my regular cell phone if you need to talk to me, but I have been enjoying sending and receiving email and texts! Also, I can respond to texts and email even when talking on a phone would be inappropriate. Carrying both phones had been ackward, but is working. Scott and I just used the instant messaging part to say good night to each other.
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Friday, March 30 (T1+ 6 months, 25 days) (T2-???)
Good news, as mysteriously as the fever started, the fever went away. And he is feeling much better. I was talking to a doctor on the transplant team - and he said sometimes fevers come and go - with no explaination. Hopefully a liver will come available soon, the surgery will go well, and we can leave these fevers/infections nightmares behind.
As Scott said, “there is a full moon coming up”.
My friends, if you use text messaging, can you please send Scott a text message so we know who we can text message? 443-538-9170
Also, I would like to wish Scott’s good friend Dave O. a Happy Birthday! They grew up together and their birhtdays were only five days apart.
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Sunday, April 1 afternoon (T1+6 months, 27 days) (T2-????)
Happy April Fools Day from Johns Hopkins Hospital. I am using Scott’s hearing issues to “borrow” a computer and write messages to Scott (large font, Scott reads over my shoulder. The nurses and doctors use it too.), but I also use it to access the web.
Anyway he is still fever free and they still don’t know why he had that fever. They are still running tests and scratching their heads. No talk of sending him home either.
They suspect a virus called CMV, (the results are not back yet) and so they can seem like they are doing something, they started him on the medication to treat it.
It is interesting. For some reason the nurses did not want to put a sign up that said “Patient is deaf”. There was one up and they took it down and put up one that said “HOH” (hard of hearing). I guess they thought “deaf” was politically incorrect. The problem is the staff come in and assume if they yell louder - Scott will understand them. I made them change it back so they know talking louder won’t help. (Scott had not seen the sign and was wondering why everyone was yelling at him.)
The kids started Spring Break so they are having fun hanging out with Grandma.
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Tuesday, April 3 afternoon (T1 + 6 months, 29 days) (T2 - ???)
Unfortunately I do not know have a lot to tell you. The doctors have not been good about keeping us informed, maybe because they find it annoying because they have to write everything down, maybe because they are busy and they don’t consider him important enough to spend much time with.
The things they said they needed to get done before he went home have been done, but they have not said anything about going home. They will probably say at the last minute “you can go home” and then there will not be enough time to arrange everything (medications, home nurse visits, etc) to go home that day. Maybe there is a reason they are procrastinating they don’t want to tell us about (ex: down payment on their new car - ok, I am being mean, but I am getting discouraged by the lack of information).
I will update the website if and when we know more.
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Tuesday, April 3 evening (T1 + 6 months, 29 days) (T2 - ???)
Scott updating this time FROM HOME! As Martha said, the stuff was all done, and we were being held in suspense, then suddenly the liver doctor walked in and gave me the “you’re out” gesture from baseball - I may be deaf, but I knew what that meant! Paperwork and other arrangements took a bit of time, but we left Hopkins at about 6PM. Maybe I’m just more kind and naive, but I think they held me there so long because they were confused by this fever, and wanted to find “the smoking gun”. The Transplant - Infectious Disease doctors are terrifically dedicated, and when they can’t explain what’s happened they get frustrated. We tried every test they wanted, and still the puzzle wasn’t coming together (I think there’s still a dozen or so pieces missing).
The things we did find out today are that I don’t have CMV (CytoMegaloVirus; cool name, not so cool disease - had it once, don’t want it again), and that the abscess has shrunken considerably to roughly a sphere a little smaller than the diameter of a dime (but it’s still there). To answer a few questions from friends’ comments: I am already on a “sub-optimal” dose of Amikacin, in order to minimize the damage to my hearing and other systems, but still keep making progress against the abscess; reducing the dose is the same as stopping it. Also, developing bacteria resistant to Amikacin is a very real concern, and they want me off of it just as soon as stopping it won’t kill me.
Having the girls home for spring break will allow us to re-bond a bit, though I don’t expect I’ll get much work done the rest of this week. I might be surprised, though. My Dad gave me a project that he needs done in a couple weeks, so I’m hoping the girls and I can work on it together in the evenings while the homework load is low. Well, goodnight from Columbia.
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Friday, April 6 evening (T1+7 months, 1 day) (T2 - ???)
We had a bit of scare on Wednesday. Scott started to run a fever again. But it started to go down again and disappeared as mysteriously as it had appeared. If I had called in, they probably would have said “bring him in” and he would have been there though Easter. None of the doctors would have been around and no tests could be performed. It would not have been fun. But so far so good for keeping him out of the hospital. We even quickly had him take a shower just in case.
Other than that everything has been very normal. Both of us trying to work to save what is left of our leave. Girls are enjoying spring break.
Weather has been very strange. Last weekend through Tuesday the temperature was in the high 70’s to 80. T-shirt/shorts weather. flowers blooming, wonderful spring weather. Then it got cold. Today the high is in the low 40’s and they are calling for SNOW tonight (no accumlations, but this is riduculous!). Flowers are very confused.
The good side of being deaf - Scott can take a nap in middle of chaos! We have 5 kids running through the house being very noisy (Shannon, Erin, and 3 cousins) - and they don’t wake him up. (I just heard a Shannon scream “ChickenButt”) My nephew is into saying “Squirrels will rule the world!”
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Sunday, April 8 evening (T1+7 months, 3 days) (T2 - ???)
Happy Easter. We just had a pleasent Easter with my family. Shannon and Erin got to get together with their cousins had a great time. Scott is getting much better at lip reading but it is still so hard for him that he could not hold a conversation during dinner and eat. So he was left out of our usual lively dinner conversation.
Thank you to whoever was the Easter Bunny’s assistant and delivered an Easter basket for the girls!!! I was a wonderful surprise to walk out and find the present from the Easter Bunny!!
Scott is starting to drive! He has been driving short distances at off-peak times. But so far has been doing ok. This will be a big help because now he can go to the grocery store or even to the office. It will be a while before I stop being nervous when he drives especially if there is traffic.
We got some good news from the insurance company. The paper work is done and they have officially agreed to pay for the second transplant. Apparently it could have been done retro-actively if necessary, but I still feel better that it is done and official.
Until the second transplant happens, both Scott and I will be increasing our work hours so we can save our leave. Hopefully the transplant will happen soon. The stress of waiting is very hard.
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Thursday, April 12 evening (T1+7 months, 7 days) (T2 - ???)
Scott updating. At first when Martha asked me to update the web site I wondered why. After all, things have been quiet for a while. Then I realized that lately, quiet is something special to report! As Martha said previously, we’re both working more; as much as possible to make our leave last into the second transplant recovery if possible. I drove to work on Tuesday for a few hours, and hope to do the same on Friday. I try to go at off-peak hours, with less traffic and no stop-and-go.
I’ve got a couple projects going at home. The doors fell off the laundry room while I was in the hospital, so instead of just putting them back the way they were (obviously not good enough if they fell down), I’m mounting those suckers so well you could do pull-ups on them (you could, not me). That and a small project for my Dad have kept me busy. It’s especially good to get the girls’ help with both projects.
It looks like Marcus and I will both be at the Hopkins transplant information discussion on April 24. The topic is a living donor panel, something Marcus has some familiarity with. Maybe he’ll be able to tell us what motivates a person to make such an incredible contribution to save another person…. Well, for someone with nothing to say, I think I’ve rambled on long enough. Good night, and I bid you peace.
PS: Larry and Donna - the card (and candy) were great!; Thank you to all the folks that work with Martha - I can actually read the closed captions without a magnifying glass now!; Mary Willis, thanks for all the cards and prayers; I owe you all more personal thank you letters, and hope to get them out soon…
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Sunday, April 15 (T1 + 7 months, 10 days) (T2-????)
For those of you in America, Happy Tax Day! For those of you not in America - this is a joke - ’cause Tax Day is not a happy thing! It is the day all Americans are suppose to fill out piles of forms to determine how much money Uncle Sam gets. We use the simple form. “How much money did you make in 2006? Send it in.”
Once again the weather in Maryland is far more interesting than we are !! Which is a good thing! Not all good, we did not get “the call” from Hopkins yet, of course. I, of course, have mixed feelings about “the call” because it will mean things will get a lot worse for a while - and possibly not have a positive outcome. But, I actually feel better about the outcome of this surgery than I did the first transplant. I was very nervous about complications and the outcome before the first transplant - and now, in hindsight, those fears were correct. Possibly because I know more what to expect and realize we can handle much more than I realized, I am not as nervous. At the same time, I am enjoying the quite, almost “normal” time we are having right now.
The laundry room door project is not going well. He tried to “re-engineer” the doors. I had to quote to him, what he always tells the girls. “Go ahead, and make mistakes and learn from them, and then move on.”
Erin is having her 10th birthday next Friday!! The big DOUBLE-DIGITS birthday. If we are still here we are going to have something as normal as a small birthday party for her and a few friends. Subject to change of course…
Shannon got dumped on this weekend as far as homework. 2 papers, as well as big assignments in two other classes. She panics easily when someone says “write a paper that ….” so this has been a tough weekend.
I have mostly been doing taxes, cleaning house, pushing Shannon (get back to work!), and running errands.
As I said the weather has been interesting. We have a “nor’easter”. A rather rare storm with a nasty low pressure system that effects the entire northeastern part of the United States (and Canada as well). The one of the storms in “The Perfect Storm” was a nor’eastern. We have lots of flooding here, especially along coastlines, and some serious snow up north. The winds just kicked up and are suppose to cause lots of damage. I don’t think we are expecting much damage in this immediate area but the stream behind our house was “excited”. It certainly has given the local meterologists something to talk about. It was miserable when I was out running errands in the rain.
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Saturday, April 21 morning (T1+7 months, 16 days) (T2 - ???)
Wow, it has been over 2 months since Scott went on the transplant list again. There has been very little change in his condition. He still gets tired easily, he still has a lot of fluid buildup, and he is still deaf. 00
Other news - Erin turned 10 yesterday! My “baby” is growing up! She is having a party here at the house - and the weather is cooperating for her. It will be 70+ degrees today and sunny. She is having a few friends over to jump on the trampoline and just hang-out. Not something she has gotten to do much of lately.
This nice weather is a big change from the past couple of weeks when it has been below normal (40’s and 50’s) and cloudy and windy. That nor’eastern we had end of last week lasted for four days!!! Fortuantely it was only nasty for two days (it snowed on VA Tech during the massacure on Monday) but it was dank and cold for several days after that. For those of you not from Maryland, many kids from around here go to VA Tech. Some of the kids killed were from Maryland, but I have not met anyone who knew them.
If you have been paying attention to the news, there was a second shooting this week, at NASA this time, in Houston, Texas. A gunman can in, tied up the branch secretary with duct tape, then shot and killed the branch chief, then killed himself. It turns out Scott knows the branch chief!! Scott says the guy was very nice and can’t imagine what beef the gunman had against him. It is kind of weirding Scott out today, as you can imagine.
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Wednesday, April 25 evening (T1+7 months, 20 days) (T2 - ???)
Another update from Scott: Illness wise, things are not really that bad right now. I was able to cancel my paracentesis appointment for this morning, because there just wasn’t that much fluid to tap off. I’ve been watching my salt pretty well lately, and it seems to be helping keep the fluid down; I still look 7 months pregnant, but only with one baby now. My feet are really starting to hurt by the end of the day, though, and we need to see if something can be done about that. I can barely walk at all after about 10 PM. I go for another MRI tomorrow, so we’ll get some idea of the size of the abscess. Maybe it will be gone?!?
I’ve been working full time most days lately, and I’m able to drive to Goddard two days per week. My advice: stay off the BW parkway at about 10 AM and 4 PM Tuesdays and Thursdays (my definition of ‘driving’ is more like aiming for the road, and not missing by much). It is great to be almost normal again. I just got a new computer at work, and have been discovering how useful instant messaging can be for the deaf. Unfortunately the work system only operates within NASA centers, but you can still send me messages on the Sidekick during NON-work hours ( I had to say that last part, because my boss reads this blog). That’s about all for now. I’ll give an update when we hear the results of the MRI.
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Friday, April 27 evening (T1+7 months, 22 days) (T2 - seems like forever)
What it’s like to be Scott: In an effort to be helpful, I asked Martha this morning what time I should be home to get the kids working on homework (instead of devising new tortures for their parents… they’re very into teamwork right now). She said it would be great if I was home by 3, so I said “no problem, because I’LL be home by 2:30″. So I went to work in an effort to be ‘normal’ again, helped out a colleague with a project, went to lunch with another, and at 2 o’clock I shut down my computer to head home (once again forgetting that it takes 40 minutes, not 30, to get home).
Then I woke up at 3:00, wondering which direction was up and where was I and why? By 3:08 I’m screaming up Soil Conservation Road with my tail feathers on fire, trying somehow to get home by 3 o’clock (if you figure out how this works, we’ll make lots of money). Traffic was light, and I pulled into the driveway at 3:32, somehow compressing a 40 minute trip into 28 minutes - not a bad trick when you realize that I barely even know where the road is most of the time. So I pull into the driveway - and Martha’s already home. I went back to sleep. Once again I’d written a check that my body didn’t have the resources to cash.
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Tuesday, May 1 evening (T1 + 7 months, 26 days) (T2 - ???)
Scott’s condition has not changed much. He is still has the fluid buildup, but not as bad. (He is getting “tapped” tomorrow morning). He still gets tired easily, but is still ”pushing it”. He is working as much as he can and then doing stuff around the house more than he should.
Tonight he spent his energies on helping Erin with long division. This stopped him from working on the project in the front yard and wearing himself out even more. He is trying to replace the wire that goes to the lamp in the front yard since the wire was corroded and not working. Unfortuantely, as with most projects, nothing was as easy as it was suppose to be.
The weather is been very nice. Warm during the day (but not too hot, yet), not humid, and cool during the night.
The stress of waiting for “The Call” is getting to me. I want to go to an event called “Sheep and Wool” this weekend. As many of you know, in my life before kids and medical bills took all my time, I used to weave and the “Sheep and Wool” festival was my favorite source of yarn and inspiration. Best part yet, it is close, here in Howard County and it is free. As I was making plans with friends - I kept having to say “if I can make it…”. I jump everytime the phone rings. But so far we have heard nothing.
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Thursday, May 3 evening (T1+7 months, 28 days) (T2-???)
O.K. I finally have something to report. Scott had an MRI last week to look at his liver and today we went to see Transplant Infectious Disease (Transplant ID). The bad news is that the abscess is about the same size as it was a month ago. It may be getting better in other ways, but not quickly. We talked about stopping the antibiotics but it is not advisable at this time since the abscess is still there. The good news is that he did not run a fever this time, and got to come home.
We also talked about the transplant. The ID doctor called the transplant team and asked them what our status was, since we had not heard anything in a long time. Apparently there are still “several” liver patients ahead of us in the “queue”. They have a higher MELD score than Scott does. Although we were told a MELD of 22 would get us a liver within 3 months - there is some luck involved in getting plenty of cadaveric donors and fewer folks that are sicker than Scott. So I can go to Sheep and Wool this weekend without worrying - too much.
On June 9 UNOS (United Network for Organ Sharing) will re-evaluate Scott’s case since it will be 3 months at a score 22. The transplant team did not seem to think they would lower the score - they are hoping that UNOS will raise the score slightly. I am paranoid that they will lower it. Apparently the antibiotics are causing Scott’s nerve problems to get worse (Extreme tenderness in his fingers and toes. His fingers are so sensitive he usual wears a glove on his left hand to deaden the sensation.) They are going to try to use the fact that the abscess is not getting smaller anymore and that the reactions to the antibiotics are getting worse to help get his MELD score higher.
The ascities (fluid buildup) is getting better. He went to get tapped Wednesday morning with the assumption that it had been a while, and he must be need to be tapped. But there was not enough fluid to tap - so we have an appointment for two weeks. And in a month we are going to get another MRI and see how the abscess is doing. And June 9 we will have the MELD score re-evaluated. And apparentlt no transplant in the immediate future.
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Sunday, May 13 evening (T1+8, months, 8 days) (T2-???)
On Tuesday, Scott went into work to see a special visitor - Queen Elizabeth the Second. He got some great photos, and I have put a couple on the “Various Photo” section. Check them out!
Yes, we went to the Sheep and Wool festival last weekend. The weather was spectacular, sunny (most of the time) but not hot. Even cool enough to enjoy all the wool products. The downside of the great weather - it was VERY crowded. You could tell the booths that had either great stuff (usually yarn) or very great deals because the lines were very long to pay for it. There are many folks who weave, knit, or spin who get all their supplies for the entire year there. There are many buses that are chartered to bring folks from far away such as Pennsylvania. Apparently there are folks who come from as far away as Texas and California!! One of my favorite booths comes all the way from Missouri. This is their only show this far east. If you enjoy “fiber arts” this was THE place to be. I have got to break down and learn to knit. I got some wonderful pictures of stuff other folks have made to try to inspire me to become creative and start making stuff again. It was interesting that what I was really drawn to was felting. There was some stunningly beautiful felt artwork there this year. There was one that was a 3-dimentional felted sculpture of a young mountain lion about to ponce on an unspecting chipmunk. It was amazing.
Scott continues to get stronger and do better. The ascities still is not very bad. We were supposed to go on Wednesday so he could be tapped - but again, I think we are going to postpone because it is not needed. But we are going to get an appointment with the surgeon who did the initial transplant. I will be interested to hear what his opinion is of how Scott is doing. This is the one thing I did not want - but I am starting to doubt if Scott needs the second transplant. Part of me is thinking that if we don’t get the surgery soon - the infection could come back with a vengence, possibly modify and become more resistant and we would be up the creek without a paddle. If, on the other hand, the infection is truely going away, then maybe Scott would be better off without going through a second transplant. If he does have to go through the second transplant - I want there to be absolutely no doubt that this is the right thing to do. But right now there is this doubt…
We went to a transplant conference on Saturday. It is a way for all transplant patients (heart, lung, liver, kidney, and pancreas - pre-transplant and post-transplant) to understand and get more information about what to expect and how they can help themselves. It is held every year and this is the third time we have gone. The doctors and the “transplant team” give most of the lectures. This is the first time I did not feel like I learned much. I went to one lecture that was entitled “Learning to Deal with Stress and the Family”. It was surprisingly useless. I was very disappointed. Scott learned even less since he could read the slides but not hear what the lecturer was saying. But we met a lot of nice folks, many recently put on the list and anxiously trying to find out more information so they know what to expect. Many were horrified when they heard that Scott’s deafness was a result of a complication from his transplant. He is not exactly a poster-child for transplant recipients.
I did find out an interesting statistic. Only those who are clinically brain dead but their heart is still beating can be used to harvest the major organs such as hearts, lungs, livers, etc. Less than half of those who have suffered a brain death but they are still on life support do their families agree to donate their organs. It is a tough decision, one I would not wish on my worst enemy, and the hardest part is accepting that your loved one is truely gone although their heart is still beating, but remember some good will come from your tragedy and your loved one will live on through the folks their organs save.
I found last week that we can request a “real-time-closed-captioning” translator for doctors appointments and probably conferences as well. Similar to a sign-language interpreter in that it is covered under Americans with disabilities act, it is someone who comes with a computer and types in what folks are saying so that a deaf person can read the conversation. Some of our doctors are willing to type up what they are saying for Scott - but some do not. So they talk to me and expect me to try to write down everything on a white board for Scott - that does NOT work. Scott gets maybe a 10% of the conversation. So for our next big appointment with the Hepatologist (liver sepecialist), we have requested the translator (the hospital is suppose to pay for it). We shall see what happens. I wish I had realized we could have requested the service for the conference as well. That would have been a big help.
Today Scott and Shannon finished up what has become a several week long project to bury 50 feet of electrical conduit through the front yard, replacing an old broken power line to the walkway light. They even had to dig under several big tree roots that were near the surface! Everything is now hooked up and working well. It’s such a relief to have that big project successfully behind us.
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Wednesday, May 15 (T1+ 8 months, 10 days) (T2-???)
We had another trip to the emergency room last night. But not for Scott. Shannon decided to experiment with gymnastics on a bicycle. She put on the front brake on a downhill slope and she and the bike did a full flip. I saw it and it was spectacular. The bad part was - it was my daughter!!!! I was torn between amazement and horror.
The good news is she was wearing a helment and did not break any bones. But she did wretch her arm pretty good and has road rash and nasty bruises in several places. The worst part - she had a big field trip today and tomorrow where they were going to do team building activities (high rope, climbing activities, etc). She is going to stay home today, but go tomorrow - and watch. She cannot do any physical activities for week. On Friday, she has no school - so she does not get to miss anything real school - just the fun stuff!!
Scott continues to do well. His joints hurt and his nerve damage is a problem - but he is doing his best to ignore the pain and keep moving and go on with life. We have an appointment this afternoon with the surgeon who did the transplant. He is going to look at stitches that were suppose to be internal but are now sticking out. We are also going to get his opinion on the second transplant.
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Sunday, May 20 evening (T1+8 months, 15 days) (T2-???)
The appointment with the surgeon got postponed until Monday, so nothing to report there. Yet. We also meet with liver specialist on Friday, so it is a busy week.
I spent the day on Saturday washing and waxing the car (I did not know we were under a water ban). The next day I got up and cars were COVERED with pollen again. It was discouraging. On Sunday, the girls and I went to a Faerie Festival. It was a lot of fun until Shannon and the girl she was hanging out with disappeared. We spent almost two hours looking for them, got security involved, etc. It turns out they had gone into the woods and started to exporing - I won’t tell you what the other mom and I were starting to imagine. Fortuantely, they were fine (until their mothers got hold of them). Shannon, BTW, is recovering nicely from her bike accident - that is until it is time to do chores.
Scott continues to get stronger. He has been working slowly but surely on his “honey-do” list. But his feet still hurt, and now his hip hurts as well. He is suppose to excercising and getting stronger - but all the little aches and pains are making that very difficult.
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I want to add a special “CONGRATULATIONS” to my nephew Dan who graduated from Boston University with a B.S. degree in Aerospace Engineering this past weekend!!
Also, to his little brother Tom who is graduating from high school next month.
And our good friend Jeanne L.B. who has earned her doctorate in education. “Dr J” has been working on this degree ever since we met her four years ago. Of course, this does not replace her other post-graduate degree of “Mom”. Her daughter was Erin’s best friend (until they moved last summer, but we still keep in touch for sleep overs). Maybe Dr J. can inspire my daughters to work hard and earn post-graduate degrees as well so they can support their parents in their retirement :)
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Friday, May 25 evening (T1+ 8 months, 20 days)
We went to see the liver specialist today and we have some potential GOOD news. Scott MAY not need the second transplant. His ascities is doing better as well as his blood numbers. He has not had any sign of a fever in over 6 weeks. And he looks good. His color is better and he does not look so “wasted”. Even his hair looks thicker. We are keeping it short for now (to let it get thicker) but it looks like he meant it to be that short as opposed to growing out. However, he is suffering painful joint pain (which may be caused by the antibiotic) and nerve damage (in his case they are overly sensitive as opposed to no sensation), also probably caused by the antibiotic.
It has been decided that we are going to a “leap of faith” and take Scott off the “heavy hitter” IV antibiotics on Tuesday (we have plans this weekend and will not be near a hospital and I don’t want to take any chances). He will be put on oral Cipro (the antibiotic used to also treat anthrax). But no IV’s. Then we wait a week with our fingers crossed that there are no fevers. If, after a week, there are no fevers or other signs of infections we will breath a sigh of relief and REMOVE THE PICC LINE!
If this works and the ascities continues to stay away, the general concensus is that the transplant would do more harm than good. Not to mention, we could not justify getting the liver. So, maybe we could start to have a life back and start to make plans for the future. Wish us luck.
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Wednesday, May 30 evening (T1+8 months 25 days)
Today is the first day on the new antibiotic (yes Sarah, he is taking acidophilus (the stuff in yogurt), and Steve - we are watching for allergic reactions). Life was a little simpler today without having to stop for the the IV meds - just take the pills. We shall see what happens.
We went to my father-in-law’s cabin on the Susquehanna River over the weekend. We got to go boating and the girls went swimming, even though the water was cold. Scott cannot get in the water with his PICC line, but he had a nice visit with his Dad and others. Next time we go, maybe he won’t have a PICC line. If we ask, they will not recommend swimming in THAT water - so we won’t ask.
For those of you not in Maryland - summer weather is HERE. It is hot and humid. Unfortunately, this is where Scott and I have our biggest disagreements - I can’t stand the heat (especially when it is humid) - and he is finally comfortable. There are times when he is cold and I am hot at the same time (but only if it’s humid).
ps: Mary, I hope the drumroll you’re referring to isn’t the one as the guy is being lead to the gallows…. (Scott)
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Thursday, May 31 evening (T1+8 months, 26 days)
No fever yet.
(Just because you are paranoid does not mean they are not out to get you.)
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Wednesday, June 6, 2007 (morning) (T1+9 months, 1 day)
In the time since the first transplant, I could have made a baby…
Scott continues to have no signs of infections such as a fever, so yesterday - the PICC line was REMOVED. For the first time since early January, he has neither an IV site nor a PICC line. He is on the Cipro by mouth still and seems to be tolerating it so far.
It helps that we are giving him acidophilus (that is the stuff in yogurt that helps with digestion and prevent the excess buildup the fungus that causes athlete’s foot, jock itch, thrush (a type of sore in the mouth), yeast infections in women, and can cause major digestion issues). Normally your body has a balance between the good bacteria in your system and this fungus. When you take antibiotics such as Cipro the good bacteria (as well as the bad bacteria - hopefully) get killed off, allowing this fungus to grow out of control. The acidophilus helps keep the fungus in check.
The bad news is Scott’s skin is itching. It started a few weeks ago and is slowly getting worse. The itching is down deep in the skin and when he scratches (especially when he is asleep) he can scratch enough to tear the skin. At first we thought it might be pollen - but he has never had seasonal allergies before and it is bad even when the house is closed up. I know what you are thinking, but it started before he started taking the Cipro. What both Scott and I are worried about is that is related to the liver disease. Excess liver stuff in the system (such as bilirubin) can make your skin itch real badly (but not always). Maybe I am imagining it but I thought his eyes were looking more yellow (also a sign of excess bilirubin).
Most of you may know this, but bilirubin is the waste product that is removed from system by the liver. It is the most noticeable sign of a liver problem since it can cause the skin and eyes to turn noticeably yellow and, sometimes, can cause itching. I have seen some folks the color of a Post-it note they were so yellow.
Weekend plans - Saturday is our 17th anniversery. And Monday is Shannon’s 14th birthday. To celebrate, Shannon wanted to go to my father-in-law’s cabin on the Susquehana river. It should be fun!
The girls have year end tests all this week - even though they have two weeks of school left!! They are turning in text books and wrapping up final assignments. Beats me what they are going to do next week….
Blame Mary “the evil twin” (she is about as evil as a sleeping puppy) for this post being so long.
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Friday, June 8 (morning) (T1+9 months, 3 days)
Scott did something absolutely decadent (for him) yesterday. He went upstairs and took a shower. He did not have wrap anything up, rebandage anything, or avoid getting anything wet. The area on his abdomen that was left open after the second surgery has finally healed up (took over 6 months!) and his “tube count” is down to ZERO (for the first time since September 5 he has no tubes coming out his side, no IVs, and no PICC lines). He thought the shower was so easy - he did it again today! This is the first time since September 5 that he is able to just “go take a shower”.
If he wanted to he could even go swimming in a pool this weekend. But swimming in the river is not advisable.
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Sunday, June 10 (evening) (T1+9 months, 5 days)
Scott updating: Yesterday we went up to my Dad’s cabin to celebrate Shannon’s birthday, and just relax for a day. The celebrating part was good, but relaxing was hit-and-miss. We always overpack in my opinion, and stress out alot getting every last posession into the van for the trip up and the return. As a result, we didn’t get there until mid-afternoon and left today about the same time (only 24 hours at the cabin). Martha’s Mom went along, and we met my Dad and step-mother there. because it was such a short visit we skipped the big boat, but Shannon and Dad-dad had fun in the fishing boat (fishing for stumps, and they caught a really big one). The girls were in swimming within 20 minutes of arriving, and within an hour of leaving.
I didn’t swim in that dirty water, but I did put the kayak in and had some fun. I discovered, unexpectedly, that because that boat is so stable I had no balance issues at all. This is not the case when I’m walking; if I don’t concentrate and use some sort of a guide, I walk like I’m drunk. With the kayak I just pull on the paddle and I’m moving easily. It felt so liberating that I paddled up to Muddy Creek and back (probably about a mile and a half round trip). Apparently I’m getting stronger, too - still a medical trainwreck, but stronger every day.
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Thursday, June 14 afternoon, (T1+9 months, 9 days)
Shannon had a good birthday. She is now 14! She got the first book in the series called Maximum Ride by James Patterson on Monday. She is now over halfway through the third book. She would recommend them …. if she could pull her nose out of her book long enough to do more than grin. It helps that all her finals were last week and they are not doing much in school this week (I think teachers had to turn in grades already), so we are having a nice relaxing week and she is throughly enjoying sitting around reading for the fun of it.
We went to see the Transplant Infectious Disease Doctor today. She took Scott off the last of the antibiotics!! He has not been off antibiotics since early January! Although the fluid collection is still there and the same size - she does not think it contains an infection anymore. She thinks it has become a simple collection of yellow fluid - she said to think of it as a cyst. Maybe it will always be there - but not dangerous at this time.
Now that the ascities has continued to go down, we are starting to see Scott’s true size. He bought some size 32 pants today. He has not worn that size since he was a junior in high school after a week of “boot camp”! He also is down to 178 lbs. He has gained enough weight to not “sickly thin” but not enough to look heavy. In other words - he looks good :)
Scott’s blood test results from last week were not great. His bilirubin and creatine (kidney function) were both up. Some of his other levels were a little worse than they had been as well. We are both hoping this is a temporary “glitch” and does not mean too much. On the bright side, though, his hematocrit (one measure of the red blood cells) is up very nicely (so much so that the doctor doesn’t necessarily believe it). He has not had any blood work this week.
Scott is also been having problems with his hip. We thought it might be a pulled muscle or trouble with his joint, but now we are beginning suspect he might have gotten a hernia because his muscles are so weak. We’re trying to get an appointment with a general practitioner as a first step to figuring this out.
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Friday, June 22, evening, (T1 +9 months, 17 days)
I hope everyone is having a wonderful Mid-Summer Nights Dream!! School is finally out for the girls (Wednesday) and summer has officially started! Shannon went with her girl scout troop to the beach to start the summer off right! Next week she goes to over-night girl scout camp. She will be white water rafting in West Virginia! Erin will be going to Day camp.
On Monday, we went to the ”primary care physician” to try to figure out what is wrong with Scott’s hip. We know there are several “tender” spots - she could not figure out if it might be a tendon problem or a hernia. She order X-rays and referred to a general surgeon, in case it was a hernia.
I made the appointment and was a little nervous that the surgeon may not be able to handle a simple surgery on a complicated patient. Then someone suggested I call the transplant folks and make sure they did not want to handle it. My first thought was - simple hernia - they are too busy with liver transplants to worry about hernias. But I called - and sure enough, they did not want anyone else “mucking about” in Scott’s insides but them. (Apparently they are very posessive of their “favorite” patients!) So we scheduled an appointment for today (Friday). However, the doctor was in surgery today (presumably giving someone a much needed new liver) and we had to postpone until next Wednesday.
(work in progress)
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Thursday, July 12, noon, (T1 +10 months, 7 days)
Scott here: OK, it’s been a long time and there’s a fair amount to report for once. The girls are both away a summer camp this week; Shannon learning SCUBA, and Erin doing horseback riding, archery, and kayaking. Meantime, their rooms have been gutted, painted, and new floors installed. If you’ve ever seen their rooms, you know what a task that has been for the past two weeks.
Otherwise, we’ve had a typical couple of weeks: dishwasher blew up, tires slashed, house turned inside out for the makeover, and the sidekick (the “cell phone” that I use to communicate with Martha) not working. We also had to buy new swimsuits and shorts for me since I has lost so much weight, nothing fit. Now we can start getting ready for Pennsic. Oh joy.
Medically, my hips and shoulders have gotten worse. The transplant surgeon confirmed that it isn’t a hernia, which wasn’t surprising when it had begun to affect the other joints as well. I’m supposed to see an orthopedic doctor on Tuesday, to see what he says. Meanwhile it just plain hurts. The good news is, I can go swimming and sitting in the hot tub at the local pool makes it feel better for a while.
I’ll go to see my liver doctor tomorrow (Friday) for a regular follow-up appointment. He’s been talking about possibly switching antirejection meds, and stopping one of the diuretics (and maybe the accompanying supplements). We’ll see how that turns out.
Oh, and we heard from the BBC this morning. The series name has apparently been changed to “Fight for Life”, and has been finished. The first episode aired in England July 9, and we’re in the fourth episode airing July 30. They’ve promised to send a DVD after it airs there. No word yet on when the Dicsovery Channel will be airing it. They had to edit it down to just 20 minutes and with all the complications, they decided to focus mostly on Marcus.
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Tuesday, Jul 24 (T1+10 months, 19 days)
The liver doctor cut back on the diuretics, partially because Scott was doing great keeping down the ascities, and partly because his kidneys were not doing great with the diuretics. Unfortunately, the ascities started to build up again slowly. But, we are cutting back on salt and keeping with the lower dose of diuretics and we’ll see what happens.
We went to see the orthopedic doctor about Scott’s hip pains. He said there was a 15% chance that the steriods Scott took right after the transplant to prevent rejection may have caused a condition called Avascular Necrosis. He thought most likely the problem was caused by long term illness and lack of physcial therapy, though. So they scheduled an MRI to rule out the Avascular Necrosis.
We just saw the report, - they did not rule it out - they ruled it in. Sigh. Avascular Necrosis is when the steriods (in his case - there are other causes as well) cause swelling in such a way that it cut off the blood supply to the bone marrow in the hips - and the marrow dies. What this means exactly - I don’t know, but it does not sound good. To make matters worse, he cannot take anti-inflammatory drugs (asprin, Motrin, etc) to help take down the swelling. We go on Friday to talk to the Orthopedic doctor again.
On the home front, the girls are back from overnight Girl Scout camp. They had a GREAT time. Their rooms got repainted and now we are trying to move them back in. Unfortuantely, it requires the ultimate sacrifice - getting rid of things. (Very difficult for Shannon). The girls are having a nice relaxing time goofing off and not working on their rooms much.
As everyone knows, the seventh Harry Potter book came out. We, of course, got the newest book as soon as it came out. Shannon read it within a few days (it took her that long because Mom took the book away for while :) ) Meanwhile, I am re-reading book 5 (Order of the Phoenix) and Scott is re-reading book 6 (Half Blood Prince). Last night he got “Shannon’s disease”. That means he stayed up too late reading Harry Potter :)
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