General update

Photo: The outside world can be a tad overwhelming to those kept away from it...

...So this entry more or less marks Jen's 7th month in Kaiser. While she has had a lot of downs in the 7 months, she does appear to have become stabilized over the past couple of months. Unfortunately there doesn't seem to be much anyone can do for her constant nausea yet, there will probably have to be a surgical option for that once she is strong enough. She is currently on a round-the-clock dosage of Phenergan, and her doc is setting up acupuncture for her to try out.

The fungal infection in her heart has stayed the same size which is good, at least the treatment is keeping it dormant. The problem is that it can not be removed in any way other than via surgery...which is very risky given her fragile state.

Other than that she has been given an exercise bike so that she can fight off osteoporosis...she's been too sick to use it yet though.

Her doc thinks that she may be able to come home if she remains stable and off of IV medication. Right now she is on an IV antibiotic and also uses Dilaudid and Phenergan via IV for 'break-through'.

I have mixed feelings about her coming home. I want her to be home more than anything, but I'm afraid to leave her alone for hours while I'm at work...I guess we'll cross that bridge when we come to it.

...for the kids

Update

Photo: Taken of me after Mini charged my bank account $1300 for a brake job.

Jen is doind pretty well, she's eating sporadically and seems to be stronger and more alert. She has developed a nasty cough which seemingly seems to have come out of nowhere...

No new news...

Happy Hallmar...Valentine's day

Take care of each other today. And if you don't have anyone at the moment adopt a rescued animal...it's better than dating and way less expensive.

Updates

Photo: Badger badger badger badger badger...
Jen is doing OK, currently combating a week-long bout of nausea. Jen's doctor told me today that he's increased the dosage of Marinol to combat her nausea, and is ordering an exercise bike for her since she can't walk outside the room. He has ordered a follow-up echo cardiogram for this week to gauge the size of the growth in her heart. Overall he is optimistic that her condition is improving slowly. I have noticed an overall improvement as well.

Randomness

Photo: There's some definite fundamental wrongness about this.

Jen is doing OK lately, a bit nauseous but definitely on the road to a better place than she's been the past few months.

Whilst perusing one of my favorite websites I came across this. It left me speechless (and slightly nauseated)!

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...

General Update

Damned carpet squid.

So...

I got a call from the phantom GI this morning. Apparently she gets "so many junk messages that she just doesn't check them that often". So she apologizes and 'is there anything I'd like to talk about'? Why yes, sure! Thanks for taking the time to respond to my 2 month old messages. After all, medical care is all about timely follow-up, and you must be the GI of the month. Funny, if I typed what I really feel here I might get arrested or my account banned. Damned lunkering dog-headed clotpole.

Oh well, she's been removed from Jen's care and has complaints submitted against her now.

J is OK but depressed so we're looking into getting her someone decent to talk with on a regular basis. She is absorbing more nutrition, and being off of the TPN and on tube feeding and regular meals when she can eat is going to go a long way towards making her better.

In honor of J, here is a great site that I know she'd love, it's quite funny. I recommend at least checking out the 'Insults' section.

Fun squid site.

Newest information

Photo: Mark Bodnar


The good: Jen is off of TPN, at least round the clock and has been moved to J-tube feeding. Apparently there is a new formula that she can use that hopefully won't make her as sick. The docs think that since the swelling has gone down she should be able to tolerate it. This will give her her necessary level of daily nutrition, and anything she can eat on top of that is bonus. Her protein levels have been rising now - the first time in months - which is also a sign that her internal swelling has reduced. She has been overall more alert and has been eating pretty regularly over the past 2 weeks until 2 days ago when she started another bout of nausea...

The neutral: Jen's kidneys have pretty much stopped working at this point for good. We knew this was happening, so it comes as no surprise. The 'good' is that her kidneys are no longer working against her by allowing the proteins to spill into her blood. The 'bad' is that she is now reliant on dialysis as a sole means of filtration.

The bad: Jen's heart infection appears to be fungal, though controllable. There still is no clear answer on what it is, but the signs point more toward fungal than yeast, bacteria or clot. I was hoping that it would turn out to be just a clot but it is very unlikely at this point.

The GI is apparently a fucking ghost because no one is able to speak or see her except by extreme chance. The only time she has talked with Jen is once in the past 2 months. I have called her office and left messages and talked with her staff more than a dozen times over that period, and have asked every doctor that sees Jen to call her and tell her to call me. She has not contacted me once in that time peroid. I am filing a compliant with Kaiser over this, even Jen's regular doctors have complained about her lack of communication.

After speaking with Health Net (my coverage) I'm not sure how to proceed with taking Jen out of Kaiser. Kaiser will not allow a Health Net doc to see Jen while she is in the hospital apparently, and Health Net is unwilling to deal with her until she is seen by a Health Net doc. So, in effect, my wife's health hinges not on what the best treatment options for her are, but rather who is the most willing to take a policy risk. I'm convinced that anyone who still thinks private medical insurance is the best way to proceed in the country has never had to really deal with a crisis within this system.

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.