CD Member in Hospital

[Eugenia Gabrielov]

Prayers to Karen, and may she recover quickly and continue to be happy and live a fantastic life!

ChrisH, if there is anything that can be done such as sending a card or flowers or anything that may help her feel better, please post publicly or send me a Pm. I would, as well as other CDers I'm sure, love to assisst you in this hard time.

[ChrisH]

I thought I'd update the gang here as there have been a few changes in Karen's situation in the last couple of days.

First, I printed out all your replies so she could read them in the hospital. She enjoyed them very much. She wanted me to tell Amanda Morrison that she too smells like a moose. It is a side effect of some of her medications. I also inadvertently cut off Eugenia's post. I'll be sure to include it next time!

Yesterday, she was officially "discharged" from the hospital. But really she just moved downstairs and "checked in" to the "nursing home" on the first floor. Patients there are expected to do more to take care of themselves. But she is still plugged into the IV machine and she still gets tired very easily. Just getting up to go to the bathroom is a major effort. She doesn't seem to be in as much pain but the doctors have some suspicion that her illness is more serious than originally believed. We are waiting for some test results to find out for sure what is going on.

We looked into taking our laptop to the hospital so she could join us all again, but before anything can be plugged in there, the hospital engineering department has to approve it. Then she would have to unplug either the bed or the IV machine. It would also tie up the phone line she shares with a roomate. All in all it doesn't seem to be worth it, so we'll have to get along without her for a while longer. Easier for you than for me.

Thank you for your prayers, something does seem to be happening, though not nearly as fast as we would like.

ChrisH

[Eugenia Gabrielov]

Awww. I hope she feels better. *sends cookies* Genia's homemade cookies are good. Maybe I'll bring them to a competition and pass them on thru you or something...fun times. Prayers go out to her.

[Dorienne]

Thanks for the update, Chris. And I am praying for Karen. Just let her know we love her and can't wait until she's back on here again. Stay strong for both of you. =)
Always,
Dori

[ChrisH]

News Flash!

I wish it was that Karen is going home from the hospital, but that probably won't be for a while yet. But even though she can't read CD regularly while she is there, she can get your e-mails. One of our team members discovered the hospital has a system to send e-mails to patients.

Just click on this link:
http://www.torrancememorial.org/tmmcreg.htm

Put Karen Husmann in the appropriate fields, add your e-mail address and type away. I'm sure she would love to hear from you all. Just remember she can't reply except through me. So don't be offended if you don't hear back.

BTW while I'm sure she would love some of Genia's cookies, she wouldn't be allowed to eat them. Right now she is on a liquids only diet. Fortunately the kitchen there is pretty good so at least the stuff is edible (or so she tells me). But she does miss chewing. Maybe when she comes home ...

Thanks for your prayers,

ChrisH

[looneylin]

I hope she has a quick recovery. Best wishes from team 433 Firebirds.

[ChrisH]

Here is a very long letter to the CD community that Karen asked me to post. I put it all in, typos, grammar errors, and all. I have the hand written rough draft to prove it. Obviously she has too much time sitting around the hospital or this would have been much shorter

Begin Letter____________________________________

September 14, 2004

To all my friends on the Chief Delphi forum, thank you for your kind expressions of well wishing, your prayers, and yes even the attempt at truly bad jokes. I think the punch bowl cracked.

My dear husband, ChrisH, wanted to keep you posted on my status. But since most of us don’t know each other well, he posted no details. Now, if you want to know the disgusting, discouraging, gory details, I’m willing to tell you, with a couple of cautions.

1. If you have a weak stomach, you might want to skip this post

2. Please, please, PLEEZE do not e-mail me with the latest pill, diet, Aunt Millie’s ever-cure, snake oil, etc. At best they will amuse me, at worst they will upset me, and you don’t want to upset a sick woman, do you? I have enough local friends and family to help me get confused. Good thing my team of doctors and nurses is coming to a consensus with me on the next treatment plan.

My Disease

Over ten years ago I developed a disease called ulcerative colitis; an Inflammatory Bowel Disease (IBD). Crohn’s is the other well-known IBD. You’ve probably heard of one or the other of them. They have some treatments in common, but many distinct features from each other. If you want reliable medical information on IBD, contact the Crohn’s and Colitis Foundation of America (www.ccfa.org).

The main symptom of ulcerative colitis is bloody diarrhea, often accompanied by painful cramping. It definitely puts a crimp in my lifestyle! I liken UC to having a “wild card”. I never know when it will be quiet or “flare up”. Medical researchers have some clues about the disease, but the cause is not clearly understood. Therefore, a cure is hard to establish. Current research focuses on the idea that UC is an autoimmune response. The lining of the colon (large intestine) thinks there is an enemy to attack and sets up a raging inflammation with bleeding and ulcers, to ward off whatever pathogen it imagines is invading.

Initial treatment consists of anti-inflammatory medications (sort of like aspirin), and possibly steroids to stop the inflammatory response. After about a year and a half of experimenting with various drugs, I went on a different medication which suddenly cleared up my symptoms.

Since 1995, I’ve been able to live a normal life, except for taking huge yellow pills twice a day. I could control an occasional mild flare up by temporarily increasing my medication.

Last winter I couldn’t get an appointment with my GI doctor because he was moving his office. Not being pushy enough, I didn’t do the necessary arm twisting, ran low on my medication … and had a flare up that lasted all winter … i.e. build season.

Troubling and Amusing Details

With ulcerative colitis patients, after the disease has run ten years and more, the risk of colon cancer increases significantly over that of the general population. Most of you won’t need your first colonoscopy until you’re 50, and then there is an excellent chance that any cancer will be nipped in the bud. With UC, however, it’s a whole different ball game. The ulcers characteristic of the disease make it harder to tell what’s a polyp and what’s ulcerated tissue. UGH.

Anyway, it’s Build season, my colitis is flaring, doctor can’t wait to peek inside my angry gut. When can a FIRST family schedule the colonoscopy? Wednesday, February 25, 2004, the day after ship date, of course! Give my sleep deprived engineer something else to think about besides gears, lifts, and weight issues. He would take leave from work, drive me to and from my appointment, and maybe catch some Z’s while I’m undergoing the procedure.

Does anybody remember what happened to ship date last winter? FIRST outsourced the packing of the parts kits, disaster ensued … the ship date pushed back to Thursday, Feb 26. “Hey, Chris, want me to reschedule my colonoscopy?” “No, better just do it. Never mind the ship date.”

Guaranteed worst part of colonoscopy: the prep ahead of time. The scope itself was fine. Demerol is a wonderful sedative. I felt no pain and got to lie on my side in a darkened room watching a movie. The movie was of my own gut, in living and sometimes gory color. It was Fantastic Voyage, but without Raquel Welch. Who would want Hollywood actors running around inside, anyway? Afterwards, the doctor gave me a couple snapshots of my poor ulcerated gut. Results showed my colitis remained confined to the lower end of the gut, a mild case. Afterwards, I went home, took some more medications, and my flare-up came under control while Beach’Bots competed at the Arizona Regional. From then through Nationals and springtime, my gut behaved itself. I enjoyed Atlanta, including meeting some of you at the CD webhug.

The Downturn

If life is a deck of cards, shuffled by unseen hands, one never knows when the wild card will turn up – the Queen of Spades, it seems. Don’t get me wrong – I believe God is in control of EVERYTHING, but I’m looking through a one way mirror trying to see in the dark.

This time I jumped right on the flare-up by increasing my big yellow pills. I made a doctor appointment, and he put me on Prednisone, which I was eager to take. Prednisone is a steroid for controlling inflammation. It’s prescribed by many doctors as an effective remedy for a wide range of ailments. It also has powerful side effects: I was hoping for my favorite side effect – a burst of energy, so I could catch up on a lot of half-finished projects.

Instead, I lost energy, I lost sleep, I lost my appetite, I felt too drugged-out to drive safely. Moreover, my gut raged unchecked. At my doctor’s urging I checked into the hospital Friday, August 20.

In the Hospital

My initial treatment was to receive an I.V. steroid. I was also given morphine, both for controlling pain and to calm down my runaway gut. Also I was given IV fluids, and nothing by mouth for a couple of days to rest my gut. (Compare with putting a broken bone in a cast to immobilize it.) They also put me on antibiotics. Eventually my blood counts started coming back in line, I was put on a clear liquid diet for awhile, then on a full liquid diet. Now I’m on a “soft diet” and get to order my own food. They also moved me downstairs from Acute Care to TCU (Transitory Care Unit, - like a nursing home, it’s supposed to prepare patients for leaving the hospital?!) I could write a book about my adventures in the TCU!

Well, I’m still on the IV steroid, but my symptoms aren’t improving. Next step is to put me on Cyclosporine, a powerful immunosuppressant used, among other things, for cancer treatment, and preventing organ transplant rejection. They’ll have to monitor me much more closely for scary side effects sometimes caused by cyclosporine. Doctors, even the surgeon are in consensus – but no one is hurrying. They’re optimistic it will halt my symptoms. If it doesn’t, the surgeon will simply remove my colon and leave me with an ileostomy and a bag.

One step at a time!

Cyclosporine treatment means two more weeks in the hospital; I’ve already been here 3 ½ weeks. I’m in no hurry; life goes on without me.

I wish I could reply to each of you personally!

KarenH

[ChrisH]

For those of you who have been sending occasional e-mails. KarenH is scheduled to change hospitals today. She is supposed to move from Torrance Memorial to Cedar-Sinai. In any case the old address for e-mails will shortly stop working. I'm not sure if Cedar-Sinai has a similar system or not. I didn't see one on their website, but then it is so big that I probably just haven't found it yet. I'll post the new address if and when I find it. Or you could just send them via me!

This will be somewhat tramatic for Karen. Torrance is where we grew up and is surrounded by friends and family. She is worried that she will be forgotten and that nobody will come to visit. Cedar-Sinai is not all that far away, but Beverly Hills is not eactly our usual stomping grounds either. But they are also one of the best hospitals around for IBD. So all in all I think it is a good thing.

We also had some other good news last night. A friend came to visit Karen in the hospital. We knew that she works for our health insurance company, but we didn't know exactly what she does there. We were talking about Karen's upcoming ambulance ride and wondering whether it was covered and how much it would be if not etc. When this friend pops up with "Inter-hospital transfer? of course it's covered. If you get ANY bills from either hospital send them to me!" It turns out that she runs the department that pays the hospital bills ... Who needs lawyers when you have friends in the right places!

[Katie Reynolds]

Chris,

Thanks for keeping us updated - I hope the hospital move goes smoothly for both you and Karen.

Originally Posted by ChrisH

"Inter-hospital transfer? of course it's covered. If you get ANY bills from either hospital send them to me!" It turns out that she runs the department that pays the hospital bills ... Who needs lawyers when you have friends in the right places!

Awesome.

[Dorienne]

Thanks for the update, Chris! And let Karen know that we will not forget about her...honestly, if I could come visit, I definitely would...But seeing as I'm over 3,000 miles away, that wouldn't work too well. ='(
Let Karen know I am praying and I sincerely hope the change in hospitals goes well for you all. Best of luck to you.

Originally Posted by ChrisH

When this friend pops up with "Inter-hospital transfer? of course it's covered. If you get ANY bills from either hospital send them to me!" It turns out that she runs the department that pays the hospital bills ... Who needs lawyers when you have friends in the right places!

That is so wonderful! What a blessing that must have been. =)
--Dori

[ChrisH]

It's been a quiet week in Cedars-Sinai...

Karen spent most of last week undergoing tests to see if she was a suitable candidate for an experimental treatment. The new treatment has had good results and takes just 2 days vs 2 weeks for the standard cyclosporin treatment. She was pretty excited about being able to participate. BUT... she failed one of the last tests. This was a severe disappointment.

So Friday they put in an additional PIC line and started the cyclosporin treatment. Yesterday when we visited she was very tired and not quite with it. Probably due to the medications. Hopefully it is one of those getting sicker before you get better sort of things. They are monitoring her blood very closely and adjusting her dosages daily. She is hooked up to an infusion pump 24 hours a day and has to drag around her "ball and chain" everywhere she goes, not that she is going very far for a while yet.

The good news is that her blood sugar levels are more stable and they haven't had to give her insulin shots for a day or two. The bad news is that she needed a blood trasfusion to keep up with what she is losing.

She still doesn't have access to e-mail, unless you send it through me. I'll be happy to deliver anything I get. She also has a phone and if you want to call PM me and I can give you the number but I don't think just posting it is a good idea.

Thanks for all your prayers

ChrisH

[ChrisH]

It's been yet another quiet week in Cedar-Sinai...

I figured it is about time I got around to another update. Karen is on day 11 of her 14 day cyclosporin treatment. Things are going well so far. Her insides are acting more normally and her red cell count is going up. She is still on IV medications, but the doctors say the transition to oral medications will only take a day or two.

Her blood sugar levels are still really high and she is getting insulin just about every day. That is supposed to go away after they switch her to the oral meds. It sounds like that should happen really fast though I think they will keep her and check her for a couple of days before I can bring her back home. Hopefully she will make the next report from here at home.

Guess who's going to be doing some MAJOR housecleaning this weekend?

ChrisH

[Dorienne]

Yikes, good luck with the housecleaning! I'd help, but I'm a bit too far away ;-)
And thank you for the update, I was wondering how she was. =) She's still in my prayers, and let her know we miss her very much here!

[Matt Attallah]

I hope she gets well ASAP and stays well down the road. She'll be/been in my prayers!

[KarenH]

I’m Home from the Hospital!

It’s hard to believe I spent SEVEN whole weeks in hospitals: August 20-Sept 16 at Torrance Memorial, and Sept. 16-Oct. 8 at Cedars-Sinai, one of the best hospitals in the west. And much of that time I was hooked up to one (or two) infusion pumps. (Remember who invented the infusion pump?) I spent a lot of time thinking about all the wonderful inventions used for modern medical treatments. My Cyclosporine treatment would have been impossible without the pump, because no human could have monitored the extremely slow drip rate 24/7 for two weeks.

The other really wonderful invention is the PIC line (Peripherally Inserted Central venous catheter). Normally, IV fluids are sent in through a little catheter in a shallow vein somewhere in the patient's arm. After three days or so, the vein stops being usable, and the nurse has to find another vein. Well, no one ever had trouble finding a vein in my arm, until after I'd been in the hospital a few days. Between inserting the IV in one arm, and drawing blood every day from the other, the hunt for usable veins was becoming like a safari for endangered species!

With the PIC line, however, the doctors use ultrasound and X-ray to locate a big vein deep in the upper arm. Using local anesthetic, they insert a long catheter that goes into the chest. The procedure only takes twenty minutes or so. The PIC line can have one or two ports, and it can stay in indefinitely. The patient can even wear it home. Best of all, there is NO pain, except when the tape holding the ports pulls on the skin a little (like removing a Band-aid).

I started with a single port, but needed two: one for the Cyclosporine to go in, and the other for blood to be drawn. They can't be mixed, or else a chemical reaction will throw off the blood counts. Watching the PIC line team changing from single to double ports was amazing: they ripped open packages, threw stuff on the floor, did something to my arm, and there was the new PIC line! They could easily make an episode for a reality TV show.

On the other hand, I thought of a new invention that is needed: the mobile chest X-ray units in Cedars-Sinai could sure use a computerized drive system. Every time the technician tried to position the arm of the X-ray to aim at my chest, the cart wheels would drag it back one or two degrees. It was as bad as a grocery cart! I'm thinking some kind of omni-drive would be nice... Of course, it would further drive up health care costs (--sigh--).

During my 14-day I.V. Cyclosporine treatment at Cedars-Sinai, the inflammation in my colon finally came under control. I had a hard time believing it at first, since I’d been bleeding so long. (Because my red blood cell count dropped, I had to have three transfusions altogether.)

Now I’m on three potent (and toxic) oral medications to keep my colitis under control. If all goes well, I will be tapered off two of them, and the third will be my “maintenance” drug. If all does NOT go well… let’s just say that the surgeon told me that there’s a 50-50 chance of a patient like me having a remission and requiring a total colectomy within a year after the medical treatment. After a year, the odds for not needing surgery are much better.

I’m also on half a dozen other meds and supplements to deal with the side effects of the main drugs! You should have seen the pharmacist trying to figure out the seven prescriptions last night. You also should have seen me trying to figure out what to take when, because each medication has a different dosing regimen; no two are the same! (Now I know why they use computers to track medications in the hospital.)

Monday, I return to the lab so they can test my blood levels and tweak my medications yet again. Meanwhile, I’m trying to enjoy being back home, but somehow a housewife always has trouble relaxing in her home after it’s been occupied by two “bachelors” for weeks. Robo-vation parts just don’t seem to match the living room décor.

Now for the important part: I want to say a big THANK YOU for all of you who sent e-mails, expressed your concern for me through this thread, and supported me in prayer.