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.