Update

Sorry for the delay in updates, I've been really busy at work.

Jen is doing OK, her protein levels are rising and she looks a lot better than she did even a month ago. She's become a little more interested in outside activities like drawing, reading, etc.

Her doc seems to think that she is tentatively on a road to becoming much healthier, and is optimistic that she may be able to come home within a few months. If she continues to improve and get stronger, surgery may be a real option for her to remove the infection in her heart.

More later...

Update

Photo: A random stunning portrait...no really, isn't it stunning? It's supposed to be a weiner he/she/it is eating. That's not what I thought it was when I saw it.

J is doing OK, she was a bit overwhelmed by the amount of visitors over the weekend but it's nice that so many came to see her.

J has been able to eat now for more than a week, and they have started her on tube feeding again very slowly. Her GI doc seems to think that it is too much of a risk to go forward with the gastroectomy at this stage because of the fragile state she's in. They are going to do an internal camera study and see if that is illuminating at all. The UCSF docs are also going to talk to her at some point to discuss other options.

They are going to do another echocardiogram this week to see where they are with the infection in her heart. I'm hoping that they can get it under control, the sooner they deal with it the better the long-term prognosis.

New Year marker...passed.

Photo: The sad aftermath of too much New Year 'cheer'.

Well another year has arbitrarily been marked as passed...and here we are on the other side still (mostly) unradiated and non alien-invaded. We didn't even get one good asteroid scare this year. Oh well. A few things bug me though...like why does 2008 seem like 1995 only with shinier cell phones and more religion? Where are the calming, thoughtful supercomputers that try to either kill you or impregnate you? And as J always says, where are all the silver jumpsuits and jet packs??

J is doing 'OK' at the moment, she is recovering from an infection that set it on her PICC line. They had to take it out and move it to a different area. She has been 'stabilized'...with her hypertension under better control, and she has had lesser bouts of nausea recently. She is in moderate spirits overall, though we are pushing her doctors for a plan so that she doesn't sit in limbo forever. I still can't believe that she hasn't been home in over 4 months...and before that she was only home for 2 weeks out of any month for the previous 6. Ugh.

J is extremely happy about all of her gifts, and sends her thanks to everyone. She is currently learning super-secret ninja stealth techniques. The latest technique is to diguise herself as a pile of laundry to avoid blood sugar sticks and O.F.R.R.s (Overly Friendly Roommate Relatives). She is much more comfortably covered by new blankets, bathrobes, socks and slippers. She has a nice new collection of octopus/squid bathroom accessories that she loves, and some new clothes...and other things that she feels she does not deserve. She feels bad that she didn't get a chance to shop for anyone. It's OK though, I beat her with a rolled-up Kaiser mental health brochure for a hour or so and scolded her roundly for not getting to the mall in time to pick up Orange Julius gift certificates for everyone. She feels much better now.

Unrelated topic. The new re-issue of Blade Runner is worth every penny. The movie looks so rich and the sound...drool...it turns one of this humble viewer's all-time favorite movies into a festival of intense nerd fodder. Kick. Ass.

Learn about other 'new' years here

Update

Photo: Jack Frost is past simply 'nipping'.

J is suffering right now from a bout of nausea...

I'm worried about her hypertension, during dialysis yesterday her BP rose to 227/125. That's a critical range that puts her in immediate risk for strokes and heart attacks. They had to give her a cocktail of BP meds to reduce it down to around 160/80. This is a problem that has been getting worse over the past year...

Hypertension definition for the curious.

Christmas is coming, and so is Chaunnukah and other holidays...this is a good site to see what else is celebrated around the world at this time.

Bleh...

Um...do I ask for a tip?

Photo: A lucky consumer who took advantage of the 'Buy 3 double topping pizzas and get a free armory" offer that Dominos had a few months back.

Sometimes being grouped in with fellow gun owners is a scary thing. Anyone else notice anything missing from this picture? Like a friend? Or significant other that doesn't go 'bang'? Not shown in picture, remnants of missing pizza delivery men.


Jen is doing OK, no big changes. We're still trying to see if she can come out for a couple days for the holidays.

Upstairs again

J was moved out of the ICU and back up to the regular hospital ward last night. Her overall condition is back to what it was before the seizure.

We are going to ask her doctor if it would be possible to release her for a short time so she can have Christmas with us outside the hospital.

Merry Holiday.s.

Christmas in space

Workers unite!

J Update

So J is still groggy, though they had given her Ativan this morning so it was hard to gauge whether it was seizure related. After talking with her yesterday I found that she has no memory of the event but that is expected. Otherwise she appears to be winding back toward normalcy (of a kind). Hopefully she will be more alert this evening.

Info: Grand mal seizure

What causes seizures?

In general, seizures may be caused by many conditions, diseases, injuries, and other factors. These may include conditions such as the following abnormalities in the blood vessels of the brain, atherosclerosis, or hardening of the arteries supplying the brain, bleeding into the brain, such as a subarachnoid hemorrhage , brain tumors, chromosomal abnormalities, congenital diseases or conditions, high blood pressure, pregnancy and problems associated with pregnancy, stroke, transient ischemic attack, which is also called a mini-stroke.

Diseases also can be a factor in seizures, they include advanced liver disease, Alzheimer's disease and other types of dementia, epilepsy, or a disease of the nervous system, hereditary diseases, infections involving the brain, including encephalitis, brain abscess, and bacterial meningitis, kidney failure, such as chronic renal failure.

Injuries that may cause seizures include choking, head injury such as a motor vehicle accident or sports injury, electrical injuries, injury during birth or in the uterus, poisonous insect bites or stings.

Additional factors that may cause seizures include alcohol withdrawal, craniotomy, which is brain surgery, high fever, especially in young children, illegal drugs such as cocaine, lead poisoning, overheating, withdrawal from some medicines, including those used to treat seizures.

J has hypertension, renal failure and was low in her Dilantin count after the seizure. Paired with a low blood sugar count this seems like a likely cause for her seizure. Her doctor thinks that since the edema has reduced in her intestines, she is actually absorbing more and her metabolism has increased. This could have led to her drug and sugar levels dropping faster than normal, leading to a 'crash' at which point she had her seizure.

The Alarm is premature

Photo: Titular band.

Apparently J and I misunderstood, and 'killing off' her kidneys is the last resort option that they are not pursuing yet. Sorry to get anyone too worried (myself included). The plan is to continue dialysis and see how much the can improve her condition overall first.

J is doing pretty well after all of her dialysis. Over the past 48 hours she's lost about 10 more lbs. of water weight. She appears more energetic and has only been slightly nauseous over the past few days. I hope to watch the rest of Ratatouille with her this evening. The last time we watched it she fell asleep in the middle due to pain meds and was discussing recipes with Remy which was actually pretty funny. It seems that J disagrees strongly with Remy's choice of herbs in his soups.

I'm sad that she will be spending her second Thanksgiving in a row in the hospital. I will be with her Thanksgiving evening...I really hope that she is well enough to come home for Christmas at least. Sunday is our 2nd anniversary and she wants Chinese food so I'll be getting some and trying to set up as much of a nice dinner as I can. It really sucks that we have not had an anniversary outside of the hospital as well...someday we'll make it to St. Orres, which we planned for both anniversaries...



Photo: Unrelated link, sent by a friend. Funny stuff.

...

Photo: The car that I would love to get for J!

This morning J's nephrologist informed her that her kidneys need to be 'killed off' in order to try and get her system back in order. I'm more than a little worried and want to get a second opinion before they try this. After all, it's not like you can go back once they go down this road. After her kidneys are 'dead' they will try to get her healthy enough to get the pancreas/kidney transplant. The problem is that there is no real guarantee (plan anyone????) that she will get that healthy once her kidneys are gone.

Now everything I've read regarding the surgery has been positive, but it still scares the crap out of me.

There are so many problems...I'm hearing few solutions.

On an up note J's old office mates sent her a very nice gift box filled with some of her old trinkets from her work space and a few gifts. She loved it, it was a mini-Christmas for her.

Photo: A facsimile of a great gift given to J by some great friends. She loves it, but Hamish is looking nervous.

J has had a pretty good past couple of days. Let's hope it continues.

Yesterday she had visitors, and timing could not have been better. J was as lucid and upbeat as she's been in weeks, and she thoroughly enjoyed the visit. She is very self-concious about her appearance, though to me she looks better than she has in weeks thanks to the dialysis. In every session they remove about 10 lbs. of water from her blood which makes her feel much more energetic.

We put in a request to her doctor for me to replace the yellow water they call chicken soup with something from home, so I hope they agree to that...and I hope J's interest in eating continues.

J general update

Photo: Pancreas angel 'Frank' lectures on the evils of the pancreas with the help of visual aids.

J is doing 'eh' at the moment. They have her so drugged up with Phenergan and Dilaudid that she can hardly talk. It's really frustrating, as my visits with her frustrate both of us, if I talk to her she falls asleep, and when she talks to me she'll fall asleep mid-sentence...and sometimes she's not even talking about anything that makes any sense. She twitches a lot when sleeping, and mimes things constantly so I wonder how much actual rest she gets when this drugged.

To make her day cheerier, they've put in a roommate who is terminal from the sound of it. There are at any given time about 15 people coming in and out to visit her. Very uplifting.

The 'good' news her doctor passed on to her today is that because of the complications of her diabetic situation, she'll be on the top of the list when she's up for the transplant surgery (anywhere from 1-2 years).

I miss her at home...it's still feels like I'm visiting when I'm at home. At least I've got Bob (cat) to whine at me when I'm there.



Photo: My animé rendition of Bob (nicknamed Bjorb by J and I because of his Scandinavian tendencies).

Update

Photo: A highland cow on the moor. This is one of J's favorite animals, so if there are any thoughts of gifts this is a winning topic in any medium.

J has being given a lot of anti-nausea drugs over the past few days and is semi-lucid, so has been unable to enjoy the laptop that I got for her. There is not a free Wifi network at the hospital unfortunately, just a password protected hospital 'staff-only' one so I guess web surfing and email are out. I am hoping that she is more awake this evening when I visit her so we can watch Ratatouille which I know she'll love. I also have some of her favorites like the Brak show and Eddie Izzard DVDs...hopefully it'll be better entertainment than the current 'what is my roommate's current mental status' game that she usually plays...

Yesterday her doctor mentioned that her diabetes may be reacting to the dialysis, making her blood sugar skyrocket and putting her at risk of ketoacidosis. I hope this isn't the case...

Things to consider

* A small percentage of the population (approximately .07 percent) are born with more than two kidneys. An even smaller percentage (about .02 percent) are born with only one kidney.

* The average adult kidney can process up to three gallons of liquid in a two-hour period.

* The first successful kidney transplant recipient was Donald R. Sugeman of London, England. He received his kidney in 1954 and survived 12 years after receiving his kidney.

* The youngest kidney recipient ever was 3-month old Aleisha C Christensen of the Netherlands. She was born with acute renal failure which necessitated the transplant. An 18-year-old cousin was the donor.

End-stage renal disease (ESRD)

Prevalence (2004): 472,099 U.S. residents were under treatment as of the end of the calendar year.

Resulting from these primary diseases:
Diabetes: 172,938
Hypertension: 114,481
Glomerulonephritis: 77,121
Cystic kidney: 21,397
All other: 86,162

Incidence (2004): 104,364 U.S. residents were new beneficiaries of treatment.

Resulting from these primary diseases:
Diabetes: 45,871
Hypertension: 28,132
Glomerulonephritis: 8,490
Cystic kidney: 2,295
All other: 19,576

Mortality (2004): Among U.S. residents, there were 170 deaths per 1,000 patient years. There were 84,252 deaths in all patients undergoing ESRD treatment.

Number of kidney transplants performed in the U.S.:
2004: 16,905
2000: 14,582
1995: 12,133
1990: 10,016
1985: 7,500
1980: 3,784


Number of people awaiting transplants (February 16, 2007):
Kidney (only): 74,000
Kidney and pancreas: 2,457

Dialysis survival (probability of patients surviving, from day 91 of ESRD, unadjusted):
1 year (2003–2004): 77.7
2 years (2002–2004): 62.6
5 years (1999–2004): 31.9
10 years (1994–2004): 10.0

Patient survival following deceased-donor transplant (probability of recipients surviving, from day 1 of transplantation, unadjusted):
1 year (2003–2004): 94.3
2 years (2002–2004): 91.1
5 years (1999–2004): 81.2
10 years (1994–2004): 59.4

Where is my wife please?

Photo: The wonderful sight that greeted me this morning.

Wonderful how hospital staff keep in touch with you. It's a little disconcerting to arrive at the hospital room your wife has been in for over the past 2 months and see an empty bed. It's even more disconcerting to have the nurse in the room say..."Um...I think she went to get some test or something...I don't really know. Let me get her nurse."

Are you @#$%@%^ kidding me??

Turns out she was taken down to get the port put in for dialysis. But I mean, why inform anyone that it is occurring? It obviously just confuses people when you tell them your plans. Maybe it's a secret surgical facility courtesy of Halliburton and for national security reasons I can't know where she is.

ARGH.

And yes, this little bed and the surrounding area is where she has spent the past 11 weeks. Looks fun doesn't it? I try to liven it up with stuffed animals and the like but what it really needs is a decorator...preferably one who didn't graduate from the Soviet School of Cold War Design and Interrogation.

J update

Photo: One of J's doctors informs me of her status.

As you may have noticed I've started to call her 'J'...there's no reason to make it too easy to find stuff about her if we don't want you to.

Well apparently I was wrong about waiting 2 weeks before starting dialysis because I was informed this morning that J is having a port put in today and will start dialysis as soon as possible. I just love having such detailed and timely information. All the information I have so far is that she will probably undergo dialysis at least 3 times a week, but of course it's too early to tell.

I am hoping that the dialysis will help her to overcome the nausea and chronic pain. From what I've read it should help her feel better, and will hopefully allow her body to recover somewhat. At the very least, it should reduce the discomfort of the excess water weight that she has gained over the past few weeks, which is driving her crazy. There is no information on how long she will be on, but I am guessing that she may be on dialysis until she is up for the kidney/pancreas transplant surgery.

J's emotional state could be better of course, and I'm sure this news doesn't help her to feel any better. I'm trying to spin it as positive as possible, and I do think it will help her more than hurt at this stage. I think the worst for her is the feeling that Kaiser doesn't seem to know what the hell it's doing with her, and she's much to smart to be fooled by them. I don't know that she is wrong in that belief either which keeps me up nights.

In other news I bought a nice used laptop on Ebay for J, and should get it within a week. I got it for her in the hopes that she could use it to write, play games, watch DVDs...generally have more control over her daily activities than just TV and...pain. It has WiFi built in but have received conflicting reports on whether or not it is available in the hospital, so don't send those emails to her just yet.

Definition and details of dialysis here for those who may want more information.

Latest "J" news

The photo sums up my feelings of the modern medical community.

J's condition at the moment can only be described as purgatory. We will be 'celebrating' her 11th week in the hospital on Saturday.

After detoxing her almost completely off of opiates, Kaiser has decided to put her back on for pain treatment. She was doing well until about a week ago when the pain was just unbearable for her. Her nausea seems to come and go with less severity, though she is nauseous most of the day.

There has been a new medication added, one which will hopefully help her to retain more protein from the IV nutrition that she has been on for the past few weeks. The concern is that her protein levels are still at starvation levels even though she has been on constant IV nutrition. This is apparently due to reduced kidney function...the kidneys are 'leaking' the protein back into her body and not utilizing it. It is hoped that this will help her to feel better, as her protein levels rise so will her body's ability to function properly (so we're told). If this doesn't improve her condition in the next couple of weeks there is talk of starting dialysis.

Kaiser, please give me my wife back.