I don't know if we were. But here we stand, in the thick of things.

Mon, Sept 15, 1997 - Jules had yet another test today at the hospital. These have been going on regularily forever, it seems. Since the start. She came home and went to sleep -- an early evening nap. She woke up and started vomiting blood. This was the first time this had ever happened... we took her to the emergency room.

Tue, Sept 16 - Jules is in the intensive care unit. She has been vomiting all night .. all blood. She is very low on blood and they are giving her more. Turns out, as the liver worsens, blood can't flow through it well and backs up. This puts pressure on weak vessels, including those around the digestive tract. The ones in the esophogus are weak and bleed. They have a nifty procedure to stop this, involving a device that goes in your throat with a camera and little rubber bands that tie off the leaks and help them clot. (Did I mention blot clotting time is also worse when you have a bad liver?)

The doctors hoped the leaking was stopped, but Jules was weak and acting a bit disoriented. She was starting becoming short with the nurses and even us. They quickly diagnosed it as early stages of encephalopathy -- which is caused, of all things, too much protein from the ingested blood! Essentially, ammonia (from the protein, somehow) poisons the brain. Heavy disorientation occurs, including aggressiveness.

Wed, Sep 17 - Since last night, the enceph. has had Jules in a chemical coma. This is the beginning of some very awful times for us. It is not an "easy" coma -- she thrashes around nearly constantly and is in restraints (so she doesn't hurt herself, or pull out IVs). At its onset, she became very agitated and screamed a lot. On occasion she might moan a little, but otherwise she does nothing else.

Thu, Sep 18 - Even though the doctors inform us that Jules is not suffering and will not remember the whole experience, the coma is very difficult to witness. She is always moaning or shifting, or even struggling. Plus, it seems to get a little worse when we talk to her, so we decide not to talk to her for fear of agitating her.

Fri, Sep 19 - Today, our father flew in from Michigan. Jules is still out. We are spending long days in the ICU waiting room, often until 2 or 3 a.m. The emotional drain is staggering.

Sat, Sep 20 - We find out late in the day that Jules has some infections in her blood. Her immune system is still being suppressed by drugs, and the infection is some cause for concern. More stress.

Sun, Sep 21 - Still no change, all weekend. It is very difficult to sleep or eat, and we really hate the ICU waiting room! But there are some wonderful people we have come to know there, and we all sorta help each other.

Mon, Sep 22 - Jules is still in a coma, and the infections are still there. She is acting a little differently, however, and almost seems to be mouthing a word or two every now and then. At one point, when our mother says "Jules, daddy is here", she slightly opens her eyes and smiles a gigantic smile! This is a wonderful sign to us all!! A huge wave of good feeling rushes over us. We hope she is on her way out of this coma.

Tue, Sep 23 - Jules is even more "responsive" today, holding near-conversations with us, despite the fact her voice is as loud as a whisper at best, and many things are completely mumbles. We are thrilled for just this little bit!! She is very weak and only will "say" a few "sentences" at a time. But the doctors tell us that she is heading out of the coma! She still has the infections, so they are keeping an eye on that. Jules is extremely thirsty and even drinks a little water. We are (of course) further thrilled!

Wed, Sep 24 - Jules is still weak and groggy, but becoming more lucid. Late today they moved her to a normal hospital room, and we all give another sigh of relief. They are fighting the infections still, and keeping an eye on a couple of other areas of concern, but things are a big step up.

Sat, Sep 27 - Jules has not been eating well, as one of the liver side-effects has made her quite nauseous. The infections are still there -- and blood infections keep her off the liver donor list, so this is the primary thing they want to fix. There are other ("expected", we are told) concerns about things like kidney and lung problems, but nothing really huge. Jules spirit is very much back to normal now, and we are all really thrilled to spend time with her and talk with her!

Wed, Oct 1 - Due to further treatment and healing, Jules is now regaining her appetite. Even though she is on a very restrictive diet, the doctors let her stray slightly just because they want her to eat -- to Jules' delight! The infections seem to still be there, but otherwise, things are going along okay.

Sat, Oct 4 - Today the results came back that the infections are gone! So Jules moves back on the liver donor list. If a liver comes up soon -- while she is still in the hospital -- she could be a candidate for transplant! She is still a bit weak, and there are other complications and concerns; but, it is almost the same Jules we all knew before the whole coma thing. Whew.

Tue, Oct 7 - Late tonight (actually early Wednesday morning), Jules called and said the doctors might have a liver for her! They will know by about 6am Wednesday. Think positive healing thoughts and good luck for a perfect match! More info when I know...

Thu, Oct 9 - Sorry to keep everyone in suspense! GOOD NEWS.. GREAT news, in fact. We spent Wednesday in the hospital as Jules GOT HER LIVER TRANSPLANT!!!

This is the break Jules needed. It is a wonderful miracle that the liver showed up. We are thankful beyond belief. Today, Jules woke up early, and doctors were very happy with her progress. By the end of the day, she was off her respirator and a couple IVs. She is doing well, and is emotionally ecstatic at the new liver.

The next couple days are crucial -- she will be watched very closely in the surgery intensive care unit. Then, she will spend another week or so in a normal hospital room. After that, there is around a six week healing period. Whew. Much lies ahead. And all your good thoughts have done so much, and will do so much more good. Thank you all. Watch here for news. YAY!

Tue, Oct 28 - Wow, I didn't mean to take so long for an update! Consider no news is good news! Jules new liver seems to be doing just fine!! She is regaining strength by the day. She is always very happy (can you blame her?!).

There was a moment last week where she went into the hospital for a few days, just to keep an eye on some things, but they sent her home complaining she was doing too well! I can only hope that my updates will all be this infrequent.

Apr 24, 1998

Three days ago, Jules went into the hospital emergency room because she was having a seizure. She had a second seizure at the hospital and they gave her anti-seizure drugs.

Many tests were performed, including a spinal tap (ug!), and the MRI showed an area in her brain where some kind of problem was. There were a few guesses as to what it could be, all of them very serious and scary, but more tests needed to be performed.

The whole time, Jules felt fine. Since the seizures had stopped, there was nothing bothering her, save exhaustion.

Today the final test was done. This was a biopsy of the area in question -- yes, brain surgery! They extracted one of the small "nodes" in her brain that were showing up on the MRI. It was a very scary and (obviously) serious operation. But they said Jules got through it well.

It all but certainly (we are awaiting the definitive answer) ruled out some of the scarier things (like tumor in her brain!) and points at an irritated, enlarged blood vessel which is caused by one of her medications.

Once the final word comes through, then we should find out what the treatment is. Hopefully it will be simple and won't complicate things with her liver.

Apr 28, 1998

Got a call from the hospital. It turns out that the final biopsy of the problem area in Jules' brain indicates its more than an irritated blood vessel. The problem is being caused by a fungal growth in her brain. The fungus is called "aspergillosis" (cerebral).

The fungus was able to take hold because of her suppressed immune system (which is necessary to prevent rejection of her new liver). This appears to be a very serious problem, as the fungus is very resistent to treatment by anti-fungal drugs.

Apr 30, 1998

The drugs used to attempt to destroy the fungus can have some harsh side-effects, so Jules is back in the hospital. So far, however, the drugs don't seem to be affecting her much!

We are told that this fungus is difficult to treat, and one resort would be to do brain surgery to actually remove the fungal areas that way. This procedure, of course, carries high risks.

Over the next couple days we expect to hear from the neurosurgeons who will tell us if they think the risk is too high to surgically remove the fungus, or if we should wait and perhaps see if the drugs have effect.

May 15, 1998

So sorry for the hang time. Don't worry -- more good news than bad. Jules has been on anti-fungal medicine for a couple weeks, and it has, fortunately, not lived up to its reputation as this horrible drug that will give her all these miserable side-effects. "Just" some nausea and small things.

Today was the day that the first MRI was taken since this drug treatment was started. The neurosurgeons said the fungus hadn't grown any, which was a good sign; but, that it hadn't shrunk, which really wasn't bad, because they said it took quite a while for the drugs to start effecting it that much. So, not to worry.

So she is continuing the drug therapy, and we all have our hopes up for the drugs to continue to work on the fungus. Until you hear more on here, just keep thinking "no more fungus!". Thanks...

friday jules went in for another MRI scan. (sorry to send this out to you all so late, after the weekend!) the news from the scans is that the size of the growths still have not changed. this means either: (a) the medicine is only keeping them at bay, not reducing them; or (b) the fungus is actually gone from them, but the spots are showing up as scar tissue "shadows".

naturally, we hope for option (b). however, the down side of this is that they want to do brain surgery to get at one of the two remaining nodules. this is scheduled to happen on thursday. we wont know what they plan to do about the second one until the results of this first procedure are in.

of course, this is a very scary and serious operation. we know the doctors are good and the first time she had the brain surgery it went very well. all three nodes are/were in very different locations, so this makes each procedure different and have its own complexities.

please keep good thoughts coming for the road ahead...

thanks again to you all. i will give another update as soon as there is more news.

firstly, my apologies to the couple of you who might not have gotten the last mailing about jules because of some server changes that have been going on. hopefully all is 100% now.

jules had her brain surgery today .. it lasted about 5 hours and the doctors said it went well and jules is doing very well. when we left the hospital earlier tonight she was still very groggy from pain-killer medicine and residual anesthetia(sp!?).

by tomorrow they will move her to her own room (she is in ICU tonight, just as a precaution) and she should be on the road to recovery. the doctors said she may even get to go home tomorrow (friday)!

the chief neurosurgeon said it was tricky, but they got out the one node they went in for. we have to wait until tuesday to find out if the node was scar tissue (dead) or still an active fungus. the test they preform involves freezing it or something.

i will report back tomorrow after i get to visit and talk with jules. and, of course, i will let you all know the report on the tests. thank you for your support and love!!

just got back from seeing jules in the hospital. she is groggy and sleepy and a bit nauseous, but in generally good spirits. the biggest thing she complained about was hating feeling stuck in bed, so i took that as a good thing! oh, and she had a headache; but, i guess that is to be expected!

none of her doctors were in today to talk to her, so we just assumed everything was on course, and she was recovering from the surgery as good as could be expected.

if there is any news after my visit tomorrow, i will let everyone know. otherwise, assume it is standard recovery stuff.

thats all for now! -jon

jules was very active today -- starting to eat and was walking around a bunch without getting too nauseous. all around general improvements.

she still had quite a pounding headache (again, i know we can all understand!), but her body seemed to be healing quite well, getting over the trauma it went through during the brain surgery.

tomorrow we get the results of the lab results of the thing they took out. that will help determine what exactly happens next, as well as if she will go home. if all goes well, and she is eating and not in too much pain, they said she may go home tomorrow (tuesday).

i will report back after we find out about these things. -jon

my apologies for taking so long to send this out! i have been very busy over the last couple days.

a couple things have happened. (1) jules got to go home on tuesday, yay! (2) the results back from the operation show the fungus is still active, boo!!!

first, jules is feeling much better, very active, and generally just about her normal self. the recovery from the surgery seems to be going well -- just some fatigue and headache.

now, on to the fungus. in a nutshell, the doctors seem fairly stumped on what exactly to do next. they explained that jules case is unique because the fungus was found so early (due to the seizures), but they are uncertain how long to keep the medicine going in hopes that it stops the fungus.

the medicine is very harsh on kidneys (and probably other things), and the doctors do not want to continue it for longer than they have to. they also hinted that they may decide to do a third operation for the third and final node. however, this will not get rid of smaller tiny spores and the like, which really only can be effectively stopped by the medicine. also, the third operation would be the trickiest one of the three.

so, we all are currently in the same state of bafflement as the doctors, waiting for some kind of decision. the next meeting to discuss it is scheduled for the 19th, so we hope someone comes up with some good ideas by then! needless to say, i will keep you posted (hopefully a little more promptly than this time).

keep those positive thoughts coming! as always, thanks so much, -jon

hello all. just a short note, not really much of an update.

we are *still* basically just waiting for some ideas or news from the doctros on what might be next steps to take. in the meantime, jules is continuing the anti-fungal medication. the only real sign that she even had her most recent operation (or is sick at all for that matter) is just that she is a bit more easily exhausted than normal. so, she is feeling pretty good!

thanks again to you all! -jon

last week, jules saw a new specialist and he agreed, along with the neurosurgeon, that jules should get the third brain surgery to remove the third and final known fungal node. they will continue the anti-fungal drug therapy in order to kill off any spores. the mri prior to this meeting showed that the regions the fungus has infected has not shrunk, but also has not grown.

the surgery is scheduled for july 30th, but this may be moved back a bit. this is because this weeks blood work indicates that jules might be rejecting again. tomorrow they are doing a liver biopsy to verify or disprove this. if she is, it basically means they will temporarily increase her immune suppressing drugs. in which case, we have to tell her to stay out of fungus! but, also, the surgery would be rescheduled because of the lowered immune system.

i will post back after the liver biopsy to let you all know what the news is with that, and when the surgery will be. please keep the good thoughts coming! and thank you all for your caring.

-jon

welp, jules is officially rejecting again. this is not really as big a deal as it might seem -- some transplant recipients reject often. i imagine it only becomes an issue if it cant be stopped (obviously!).

so anyway, this means there will be higher doses of prednasone (known for its emotional rollercoaster ride -- doh!) and lowered immune system. so please think protective thoughts to keep assorted nasties away from jules during the much weakened immune system stage!

also, as i said last time, the third brain surgery has been postponed. the date is not certain, but jules said it might only be pushed back a couple weeks. more on that when we get news.

thanks everyone! -jon

p.s. prednasone also tends to make one restless and not want to sleep, so you are all welcome to send jules long, droning anecdotal emails, trashy paperback novels, board games, huge crossword puzzles, epic films, etc. haha

busy last few days, but i wanted to wait until we knew a bit more detail before i sent out some more news. so here it is.

mondays liver biopsy showed jules was rejecting again, so her prednasone level was increased. a subsequent check of her blood levels (was it tuesday or wednesday?) showed that wasnt doing the trick, so the next line of defense was initiated.

a different drug (i forget the name) is now being used to keep the immune system at bay. the doctors said her body was fighting really hard -- too hard! -- and just didnt want to calm down! so, hopefully this new drug will stop her immune system from fighting against the liver.

the down side of the drug is that it tends to have flu-like side effects, so jules was admitted to her all-too-usual floor so they can watch her and make sure she isnt getting dehydrated and also to give her her drugs thru her iv, rather than orally since she most likely wont be able to keep them down. jules pharmacist said, of the new drugs, "i am glad to hear she is feeling sick! that means it is working!" what a mixed blessing, huh?

this treatment could go on for a week or more, until the rejection has sufficiently stopped. so, until then, jules is stuck in the hospital room feeling like she has the flu, mostly just sleeping cuz of the anti-nausea stuff they give her. well, at least those drugs make her conversations sometimes very interestingly silly! haha.

as a result of this situation, the brain surgery has been indefinitely postponed. they *estimated* it might now take place in 2-3 weeks, since she should be off this medicine and stop rejecting by then.

i will be, of course, relaying any emails or messages i get for her. thanks to everyone SO MUCH for all the gifts and support and thoughts. she is putting a lot of the time-passing gifts to use, believe me.

so, until you get further news, you can just assume we are all sitting around the hospital playing cards, doing crossword puzzles, watching the simpsons, and eating the deserts that jules cant!

thanks and best to you all! -jon

yes, jules is officially *home* from the hospital! (and i am only 2 days late in tell you all this... SORRY!) it was a release slightly ahead of schedule, so we figure that is a good sign, and generally good because she doesnt have to deal with the effects of that anti-rejection medicine anymore!

so, back to waiting to hear news about the next brain surgery. we heard rumors that stuff should start picking up around the 20th, but we are used to the very loose concept of scheduling in these situations. needless to say, once we all find out something i will be sending it to you all!

big thanks to special guest visitors of jules, those who provided *well-used* pasttimes, and everyone reading this!!

-jon

on monday, jules blood test showed signs of rejection once again. a biopsy yesterday confirmed this, so she was once again admitted to the hospital for more of the old evil anti-rejection medicine.

we dont really know if there is a significance to another rejection so soon, but the doctors tell us it is all a very delicate balance, especially trying to keep her immune system not-too-suppressed to help fight the brain fungus.

even though the news of rejection was a bit of a morale-buster, we also believe that the brain fungus is showing signs of *shrinking*, so this gave us a bit of good news. we havent absolutely confirmed this fact with her neurosurgeon, but we are crossing our fingers. definitely the brain fungus is the primary threat, so this would be very good news.

once again, they predict jules should be in for a week to 10 days on the anti-rejection medicine. most likely it will just be business as (unfortunately!) usual, so i probably wont have much to post to you all. but when i get any news, i will send it out.

thank you all again for the support and love! -jon

earlier this week jules went in for her mri scan. her anti-rejection medicine has tapered down enough that they knew they would be able to go ahead with the surgery if they needed, so this is why we had to wait this long for the mri.

the brain fungus apparently has changed very little -- hasnt grown and hasnt shrunk. so, over the past couple days her neuorsurgeon and infectious disease doctors met and decided to go ahead with the surgery to remove the third fungal node, in keeping with the aggressive treatment.

the procedure is a bit more complex than the past two surgeries, but it is taking place in a region of the brain that carries little risk of damage to mental or physical functions, which is the more risky aspect. so that is good. monday is a consultation with the brain surgeon about more specific details of the operation, so i will report back after that.

all around, jules is feeling generally well. *of course* just today she was feeling nauseous from her medication -- after feeling better for so long... haha she couldnt wait until after i sent this out!? but, she is in very good spirits and is always ranting about how happy she is for all of your caring.

thank you all for your patience, support, and thoughts. once again we have another small barrier we will get through, but its a big step towards beating the brain fungus!

-jon

sorry for the ridiculously short notice on this, but i have been either wrestling with fussy computers, going places on planes, or just plain flaking out.... but, tomorrow, (tuesday 20th .. technically later TODAY) jules will go in for the third brain surgery.

the time of the operation is unknown, but she is third up for a surgery, so it will probably be a bit later in the day... afternoon, maybe. they expect a recovery that will be longer than "usual" (before, i mean)... so i am *guessing* maybe she will be in the hospital recovering for a week(?).

i, of course, will send an email as soon as i get back tomorrow night. keep the wonderful, healing thoughts coming!

thank you all very much, -jon

just a quick note, cuz i am in need of sleeeep... just got back from 21+ hours in the hospital -- nearly *all* of which was waiting for jules surgery. (it was bumped nearly 9 hours late cuz there were a bunch of trauma patients that arrived.)

but the operation was successful, in that it went well and they got out the third node of fungus. there word isnt back from the culture and biopsy as to the state of the fungal growth, in general, in her brain; this should come in a couple days. hopefully it will show that it is all dying off. regardless, getting this last main bit of it out is an important part of the aggressive treatment.

we left jules after she had gotten settled in recovery. she was very drugged up and mostly sleeping. next report will be in a few days after she has had a chance to get past the initial recovery. thanks bunches to all the wonderful thoughts that pulled us through today!!

-jon

just a short note. jules is recovering right on track from the brain surgery. she is still tired and looks a bit like she was in a boxing match (and lost!), but she is getting past the nausea and has been quite conversive for days.

there are a lot of unknowns about whether or not this will put an end to the brain fungus once and for all. the doctors simply do not have cases to serve as precedence for jules, so they are often in the dark. but there is no doubt this is a necessary step to aggressively treating it, and i am sure all of our thoughts are helping as well!

i am guessing she will get out of the hospital on maybe monday or tuesday. the docs say as soon as she can eat normally and walk around with no dizziness she can come home. i will be visiting her for a fair part of each day she is in, so will be sure to pass along all your thoughts and messages.

thanks tons, -jon

later today (wednesday), jules is scheduled to go home from the hospital! in the last couple days she went from having trouble keeping down her liquid diet to requesting a hamburger!

so, her appetit is good. she has a lot of physical strength back, and is 100% alert. and her face only looks mildly beat up! haha

the anti-fungal medicine will continue for a couple weeks, just to try to beat any last little spores holding on, then regular mri sessions will be done to look for any of them popping up. but i dont think they will!

thank you all for the support, -jon

my apologies for sending this out so late. i have actually spent the last couple days at jules (celebrating?) and/or sick (if i dare call my petty discomforts "sick" ... haha).

about two days ago, jules went in for the follow-up appointment with her neurosurgeon to discuss the results of the last surgery. her doctor told her she officially showed no sign of fungus and could stop her medication! her infectious disease doctor brought in about 7 other doctors (as if they wouldnt believe it if they didnt see it!), and jules was once again repeatedly called "a control of one". the only case like it.

after seven months of having her pic line hanging from her arm, she got it removed -- free at last! the medical folks came to her home and took away her iv drip equipment. it was a joyous celebration to say the least.

her doctor told her they would do routine mri's to check for growth, in case small amounts remained behind undetected, but he was very positive about her situation. i am sure it is all gone. now we have to convince jules to stop playing in fungus... haha

thank you all for your continued support. -jon

first, my apologies for the long break. indeed, it was (and IS) a long holiday season. scribble.com was off the air for a bit, and this caused delay in email news about jules (as well as lack of web pages). but we are back; more or less!

shortly before christmas, on the 22nd, jules had to go in for another biopsy because her blood counts were high. turned out she was rejecting! how is that for a present?

she checked in to her favorite floor at the hospital and got comfy for her evil anti-rejection medicine. needless to say, it was going to be a long stay, so we all readied ourselves for xmas at the hospital -- food, decorations, and presents.

jules was hoping to get out after a week's treatment, rather than the usual 10 days. but, her recent biopsy proved that to be wishful thinking. in fact, she gets to stay in an extra week! so that makes two weeks total... indeed, new year's was at the hospital as well! naturally, there was much more food and partying (partly care of the wonderful staff!). the chocolate fondue made sure she got *extra* insulin that night.

so that is how it stands now. i will let you all know (promptly!) what happens when this stay is up. thanks for hanging in there.

happy new year! -jon

quick, but good, news today. jules indeed got to go home today! i just talked to her on the phone. hooray!

and just a reminder, now that scribble.com is back up, she can start getting email again. (hint hint... haha)

all the best, -jon

many of you have been asking why there hasnt been a post about jules in so long. well, this time, i am so happy to say that the cliche "no news is good news" is the basic reason!

things have been pretty "by-the-book" for jules since the long-ago previous posting. jules has her couple blood tests a week, and very infrequent reaction to medicine levels being a bit off.

she has been back at work (half-time) for a couple months now, and seems to be enjoying the re-integration into "society", despite an occasional complaint about having to work! thats a good sign for sure.

hopefully it will be a nice long time before my next post, which will say even less!

thanks, -jon

dont worry, just some small news about jules. its been a LONG time between mailings, so that is a sign of just how well things have been going along.

a couple days ago, jules weekly blood test showed the counts off so she had a liver biopsy and showed to be having a "mild rejection".

they have increased her prednasone dosage, but she doesnt have to stay in the hospital or anything. she just has to drop in to get the increased prednasone dose intravenously. eventually she will be tapered back down to her previous level, once the rejection has stopped. however, in the meantime, she isnt allowed to drive or work, so it looks like a few weeks of "vacation" (tedium?) for jules!

thanks for being out there. keep thinking those non-rejecting thoughts!!

-jon

i have once again forgotten the exact terminology, but jules rejection is retreating! or getting better. or whatever it is called. so that is very good news.

a few days ago she had another biopsy to check to see if the increased meds were helping, and it seems they are. so now she will just stay home for about a month, while the prednisone level tapers back down to her usual dosage. then she will have to get off her lazy butt and go back to work! haha

thanks for sticking with us, and for all your kind words during this latest incident. hopefully it will be another very long gap between news like this!

welp, its that time again. at the end of last week, jules regular blood tests showed some high counts, and a subsequent biopsy indicates she is rejecting again.

this means "the usual" regiment of big doses of prednazone and some time off work for her, as well as the other adjustments to her meds which will help curb the rejection. jules is feeling well and is in good spirits (of course!).

i will post another message once the rejection is subsiding. until then, thanks for keeping up with jules, and keep thinking those wonderful, healing thoughts! feel free to send jules a little message or something ... it will give her something to do while she is bored at home getting better!

i am a couple days late on the news, but just want to report that jules' rejection is indeed under control again. the increase in meds seem to be doing the trick. well, that and all of your good thoughts! so now jules is just going to be "lounging" around home until her medication levels are low enough that she can go back to work. ok, well, she will be healing then also. haha

thanks again for the caring thoughts and keep them going. lets hope its a long time before the next rejection routine!

-jon

This is amazing. Do I even need to mention that I hope it just stays this way?? Thank you all for your continued support. Keep your eyes on the updates here, and I sincerely hope that you all will be staring at a whole lot of nothing for the next several years as well. (But I will try to remember to post a note now and again saying things are fine.)

A few weeks back Jules was getting tested for what had been determined to be a heart condition that was causing her to not get enough oxygen circulated throughout her body. They were trying to determine the whats and whys. Eventually, after many hospital visits for various symptoms of this, she went in for a transesophageal echocardiogram, which is an ultrasound of her heart. She was put under anesthesia and the operation caused enough shock to her weakened body that her internal systems (lungs? heart? kidney? I forget which combination right now) started failing and she didn't have strength to come out from under anesthesia.

They determined that immediate heart surgery was necessary, so the very next morning she went in. Our dad flew out in record time, and, as usual, there were more questions than answers and not a whole lot of reassurance of whether or not she would pull through. The operation replaced a valve in her heart, which, apparently, had been damaged at some indeterminate time earlier by some sort of infection. The scar from the infection had healed, but left a "divot" (those doctors love golf...) in the valve which, over time, had caused enough stress on the valve that it was failing.

So the valve was replaced during this open heart surgery. Keep in mind that Jules had this whole time been under anesthesia since the time of the failed examination operation the day before. She had no idea she was getting open heart surgery, and we were all very antsy (to say the least) that we had yet to see any kind of sign from her.

For the first 24-48 hours after the surgery, things were very tense, especially since her kidneys were still in failure. But the operation had been successful. The doctors kept focusing on her kidneys in a very worried way. At one point we drank lots of water in order to produce "sympathetic" kidney function, in hopes of encouraging her! She was still on the lung machine as well.

Slowly, her breathing improved to the point where they thought she could breathe on her own, so they took her off the breathing machine. This also meant she could have her pain killer medication reduced to the point she started actually waking up. This was a big moment, cuz it was the first real "contact" with her in days.

Thankfully, her kidney function also started improving. It was a slow process, but they kept improving on the road to normal functionality. We all breathed a big sigh of relief when they moved her to a regular room off the cardiac floor and she started returning to the normal Jules we knew.

So now she is at home recovering, not lifting anything heavy at all, and doing an excellent job of altering her diet to be kind to her heart. Keep the good thoughts flowing to help this be a quick and complete recover for Jules! And let's hope that it will be at least a couple more years before I have to write another long entry.

Jules is ready for another transplant. By "ready", I guess I mean both that she is needing one (not too urgently) and has done all the homework (paperwork) to be on the list. And, I suppose, she is (as much as one can be? well, we know super-Jules) ready for it.

Apparently the list waiting for livers isn't too long now, so she is at (or near?) the very top. We had a bit of a downer of a moment when a liver was available, but because she had a cold, her doctors didn't want to risk a transplant. A bummer, but certainly better than risking pneumonia post-transplant.

So, now, we sit and wait. Jules has to keep her cell phone on at all times. Oh the suspence! Yow. Other than that, she is feeling pretty good. Dealing with the effects of a tired liver, sure. Can't say I was really feeling nostalgic for a little jaundice and some water retention; but, at least it doesn't seem so new and crazy this time!

Well, and, pretty much, here we are. She is doing well now, after the operation. There still is some concern about her kidney function, so I will give more updates on that. But she is feeling "incredible" (in her words, this morning) and waiting to get moved to a room from ICU (they are full up, it seems).