BS: Mudcat Mojo - VaTam's daughter

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 09 Jul 12 - 08:12 PM

Ts&Ps from here too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 09 Jul 12 - 06:32 PM

Good vibes for both of you and your families are on their way.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 09 Jul 12 - 05:25 PM

May this next week go quickly- and the time with your daughter be slow and satisfying.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 09 Jul 12 - 04:50 PM

she and Galen now moved in with his parents

all her bloods look pretty good

blood sugar near enough normal now she is weaned down to very low dose prednisone

still in lots of pain around the spleen and liver

spleen still enlarged so they think blockage in hyper portal vein

another endoscopy and colonoscopy today, even as I type this

send good vibes for good outcome, please

can't wait to see her next week

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 20 May 12 - 08:30 PM

I hope she gets SSI. Something else to pray for!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 20 May 12 - 07:37 PM

what a system

sending love to you & your daughter

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 20 May 12 - 02:18 PM

sorry I haven't been back. She is still in a lot of pain. So much so, that she is on facebook at all hours which makes getting bits of info out of her easier.

She has been weaned down from 60mg to 15 several times a day. She still needs the fast acting insulin. I am worried that she now has permanent diabetes. 2nd hospital said she should never have been on so high a dose and for so long.

She now has steroid induced goiter. She said if she painted her face and neck green she'd look like a frog.

Spleen is still very large and painful. I can't get an answer about whether or not the docs are bothering to take blood counts to make certain she has enough white cells and platelets to fight infection and stop her bleeding to death respectively. If the spleen is large it means it is trapping the blood.

They discovered she also has a vitamin D deficiency. She is blaming me for that. I told her that is the one problem he has that is NOT inherited.

Binder and Binder are sending some forms for her to complete, they think she has case for social security incapacity. Her fiance's father will help her complete them.

She and Galen are about to move in with his parents into remodeled basement.

I am still sending her money to pay for drugs (fast acting insulin is expensive) and doctor co-pays. Her father did cover the rent this month. And he did get that extra AFLAC hospitalisation policy she took out at work to pay.

She is requesting a letter from her PCP that states she cannot work for a year so she can apply for SSI. As it is, the steroids and diabetes make her so thirty she constantly drinks and pees which means she cannot work. Never mind the effects of pain and painkillers on her personality and mental function. She still cannot drive, so she couldn't get to work if she felt able to work.

She is not happy.

Thank you all for your good thoughts.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 20 May 12 - 01:28 PM

"I hate, loathe and detest "for profit" health care."

I'm sure with you on that. It seems to me that any country where people without jobs and/or money are expected to pay 2 to 8 times (8 is a guess; it could well be higher) more for their medical treatment/drugs than people with jobs/money simply cannot consider itself truly civilised. (Seems to me the folks without jobs/money end up subsidising the medical care of those who do... now is that the wrong way round or what?)

And the hoops that even people with jobs (i.e. insurance -- but only if their jobs are full-(rather than part-)time) have to jump through -- and the runaround they get when they try to get the insurance to pay out... is incredibly stressful -- and (more than) enough to make one sick/keep one from getting better. I know of so many very distressing stories...

Of course, if you have plenty of money, it's not nearly so bad.

It makes me so angry reading about what Hils is being put through (it's really & truly the very last thing you need when you're life-threateningly ill!) -- and I'm not even her mother. I can only try to imagine how you must be feeling...

Anyway, rant over. Still got my fingers crossed for your daughter -- and you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 19 May 12 - 05:25 AM

Off out this afternoon T - will ring you later this eve.
Hope things ticking over OK with Hil?
:) x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 18 May 12 - 10:06 PM

How is you daughter? I've been waiting to see this thread again. Still praying for her and for you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 May 12 - 02:16 PM

arrrgghhh... CS -- I've lost your phone number. Do you still have mine? How do we communicate?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 04 May 12 - 11:43 AM

My thoughts are with her too.

If no one can pick her up from the hospital, don't they have to keep her? Just a thought.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 04 May 12 - 11:03 AM

Refresh

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 03 May 12 - 10:58 PM

Mine, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 03 May 12 - 02:48 PM

Got my fingers crossed.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 03 May 12 - 02:33 PM

She sees gastro doc tomorrow. she is starting to feel really unwell again which I think indicates her spleen is trapping her blood again.

I can't help wanting everything to happen immediately or better yesterday or last week or last month or freaking last year.

Why they let her get so bad that other organs are being damaged, I don't understand. Probably because insurance dictates what they can and cannot do based on some stupid formula.

I hate, loathe and detest "for profit" health care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 03 May 12 - 09:47 AM

Sandra said it all.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 03 May 12 - 09:16 AM

what a situation to have to follow from such a distance

love & hugs to all

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 03 May 12 - 05:10 AM

Still here, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 02 May 12 - 09:54 PM

Still praying.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 02 May 12 - 02:02 PM

No news on facebook.

Last message to me stated still having problems controlling sugar, they've started weaning her down on prednisone. Yesterday morning she was complaining of return of bad spleen pain. I asked if the docs are monitoring her white cells and platelets but have had no answer.

Thanks for asking.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 02 May 12 - 01:49 PM

How's Hil doing? Hope there's been some progress?
Love to you both x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 23 Apr 12 - 10:50 PM

My heart continues to go out to you and your daughter. And my prayers continue to go out for you both, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 23 Apr 12 - 06:47 PM

I don't think the other two specialists would have to provide the basis for malpractice..there are expert witnesses etc. and there are procedures to follow..if they followed procedures they are probably OK but if it is standard practice to not send someone home with climbing sugar, as I would hope it would be, then all sorts of other specialists could testify.

See if there are malpractice lawyers in the area...they usually take on a win the case basis I think. mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 23 Apr 12 - 06:09 PM

I hope so!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 23 Apr 12 - 05:11 PM

Latest update or downdate

Very worrying that sugar still hovering between upper 300s and upper 500s. Can't seem to get the level down for any length of time. The endocrinologist and the rheumatologist have both stated that the docs in the first hospital should never have started her on such a high dose of prednisone. That this is the cause of her diabetes. Also said the hospital should not have released her when her sugar was climbing unchecked.

Well she is absolutely unable to work in this state. The pain in spleen and portal vein is being controlled by about half the dose of pain meds she was on before. Good but it is still so much pain killer that she cannot drive safely nor function at work. Still suffering severe nausea when the sugar rises as it does after every dose of prednisone.

She has been experiencing prednisone insomnia (proven by all the middle of night posts on her facebook) and what appears to me more than her usual quirky mania. Some of her posts are not like her at all.

She is flat broke from medical co pays and prescription meds. Insulin is criminally expensive as are the sugar test strips when you don't have a prescription for them. Her PCP neglected to add them last time Hil had appointment with her. I sent another $400.00. But this is unsustainable.

She has completed the Family Medical Leave Act forms and is working on Social Security Disability forms. Some think she has a case for medical malpractice. I think you need to already have money to get anywhere with such claims. I don't think she can even get lost income and medical out of pocket back, unless those 2 specialists provided written corroboration that the first hospital really messed up her care and caused the diabetes. NOT LIKELY as docotrs protect each other. And that won't be enough in Virginia unless they can prove the diabetes will be a permanent irreversible condition. Too early to know that.

Well thank you all. Hopefully next news will be better.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 05:19 PM

oh she is loving the chai tea with cinnamon and has been using that. I will tell her about the green beans

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 18 Apr 12 - 05:08 PM

One thing that can mimic insulin and is used in cats is green beans...if she can eat vegetables this would provide with diabetes fiber and would probably not hurt her in any way. They say plain cinnamon sprinkled on foods will lower blood sugar...as always, this is such a severe case that nothing should be taken as advice.   mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 04:24 PM

The deal is her autoimmune is attacking hepactic and splenic portal vein system causing hypertension in the portal vein, inflammation of spleen and other portal vein organs (stomach, liver, kidneys, etc.)

The spleen is not releasing white blood cells and platelets back into blood stream causing
   1) it to get enlarged and painful
   2) putting her at risk of bleeding to death due to inability to clot (platelets) and inability to fight infection (white blood cells)

SO

Put her in hospital for nearly 2 weeks 13-24 March to try and figure out what is causing problems and how best to treat.

They treated this with high doses of 2 steroids. Then changed to high dose prednisone which is working slowly to get her platelet and white cell count up. Sent her home.

BUT

Prednisone was causing sugar to spike really high, creating a diabetic reaction. She is not diabetic. The prednisone is making her so. She has adjusted her diet as she has been instructed, but it didn't matter much

BECAUSE

the gastritis, splenomeglia and possibly the sugar spike made her so ill she could not keep food or drink down. 5 April back in ER (different hospital this time) and they admitted her. Put her on mitaformin for the sugar problem and sent her home.

Went to PCP couple of days later and Hil's sugar was 422. PCP said stop eating fruit and left the room. Appointment over.

SO

She became dehydrated and her potassium went dangerously low. So back in the hospital this last time from 12 - 16 April with sugar at 722 and doctors livid that a diagnoses proper treatment had not yet been found.

Hilary is now up to speed with clocking how she feels, checking her sugar levels drinking lots of Chai tea with cinnamon (no sugar) and trying to stay on top of the sugar spikes with insulin if her damned PCP will only frigging prescribe and CVS actually have it in stock.

She had to wait 22 hours to get the insulin she needed and the rest which CVS gave her a hard time about again. Turned out the rep was not looking at the correct fields or screen on computer and tried to tell Hil she could not have her prescriptions. Hil demanded to see another CVS rep and she sorted it out. I shudder to think if Hil had not the energy or presence of mind to be assertive about it.

All her meds - prednisone, pain, and nausea pills and anxiety meds and about 10 days worth of insulin = $125.00. The insulin being the most expensive, the most critical to her needs and what she got the least of. I fear her insurance has something to do with this.

Looks like I need to send another payment to her, but I can't for a week until PAYPAL sorts out the 4 fraud transactions that went out of my account to 4 different Polish men this past Monday.

Hucking Fell I am completely wiped.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 18 Apr 12 - 02:28 PM

What is she eating in the meantime..obviously we can't recommend from here with this complicated a case, but I would think that anything that would cause blood sugar to rise in a regular diabetic prone person..fruits, juices, pop, starches of any kind...would probably make it worse...green vegetables, healthy fats and meats would lower it..but again, her situation is so complicated that ordinary situations might not apply or her eating may be so restricted that she has to eat the bs raising foods and take the insulin...it is unfortunate that she will probably never find a doctor that could tell her the best plan..but that is almost universal.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 02:02 PM

As of 19 hours ago PCP had prescribed a different type of insulin but CVS was out of this med. Mentioned that sugar was spiking due to taking prednisone that morning and now needing to take another dose with no insulin to mitigate the reaction.

Not a peep on her facebook since then.

Worry.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 17 Apr 12 - 02:28 PM

Same kinda crap here. Even if you are in a hospital, unless you have someone there to stand up for you when you are very sick, the staff will screw you over.

Keep the faith.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 02:23 PM

medical malpractice... Apparently not.

Not unless she has lasting injury (or death) that is proved to be directly related to the PCP's negligence or mistake.

Sneaky isn't it. PCP probably knows this and is just trying to milk the system for what she can get. If Hil does not make appointment to see her than the responsibility falls back on her own shoulders. She is still sick, in pain and exhausted and now has to go out again to PCP in order to get the medication to keep her from going into another severe diabetic incident.

How do seriously ill people cope with this system? It is horrendous.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 01:40 PM

AAAARRGHHHHH!

Hilary: hate hate hate this..... need long acting insulin but CVS wont fill until insurance gets ok from pcp.. pcp wont give ok unless go to see her today.. blood sugar at 425
It should be ok. I am going through a insurance liaison that I met at the hospital so I can get the meds
chai tea (cinnamon) working went from 425 to 395 in past hour

Me: does stress raise sugar levels? If so perhaps you should raise that with the PCP. Seems like she wants appointments for the sake of getting more insurance and your co payments.

Hilary: That's what I told my liaison.. and she tried hospital docs now is going after my pcp.. I am so gonna change that bitch .. She saw my sugar was at 422 two days before landing in the ER for a second time with high blood sugar. She said stop eating fruit and just left the room.

Me: medical malpractice?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 17 Apr 12 - 06:58 AM

What a relief to have her feeling better and at home! Life is a balancing act in so many ways; she has more information now than she had, and I hope she can continue to feel better.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 17 Apr 12 - 05:21 AM

balancing medicines is not easy -

sending more hugs & good wishes

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 02:40 AM

She is out of hospital now and feeling much better than she has in a month, though spleen is still giving her great pain. The prednisone almost killed her in 2 ways. Diabetic shock and shock from dehydration and too little potassium. Looks like her life will be a constant balancing of mitaformin against prednisone. Steroids to keep her blood platelets and white cells at health level and mitaformin to bring the sugar down caused by prednisone.

sigh. gotta get ready for work now.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 15 Apr 12 - 07:35 PM

What I don't know said.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 15 Apr 12 - 05:22 PM

pleased to see better news, stillpraying things carry on improving.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Apr 12 - 04:26 PM

"She had hoped to have a Titanic party."

Well, since the lively vessel the "Strong Lady Hilary" herself hasn't sunk, I'd say she has a good Titanic party coming to her.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VaTam -what happend to my cookie
Date: 15 Apr 12 - 03:35 PM

She is moaning a bit about missing the centenary of sinking of Titanic. She has been a Titanic- holic since she was about 9 or 10. She had hoped to have a Titanic party.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VirginiaTam - cookie crumbled
Date: 15 Apr 12 - 03:23 PM

She seems a bit better today. They are managing the pain better but it is still there.

"Just saw dr if sugar gets better go home tomorrow and I have specialist to follow up with."

No blood clots were found. Her leg pain was due to low potassium. They are only weening her down on the prednisone and has appointment with GI doc for follow up on spleen thing.

I don't know if specialist above is rheumatologist.

She is feeling very grateful for Galen and his family. And said she feels better than she has in a month. Also thankful for all the good wishes coming from everywhere.

I say ditto to the last one.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 14 Apr 12 - 03:43 PM

Gnu just said it for me.
Still thinking of you and yours.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 02:55 PM

She just talked to doc

They are bringing down prednisone and upping insulin... All in hopes to get sugars right and ween me off the evil steroid and maybe go on a diff one so my blood platelets and white cell goes back up... Liver enzymes seem ok atm

She has had autoimmune hepatitis. But as you see from above her liver enzymes are good at the moment.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: mg
Date: 14 Apr 12 - 02:49 PM

have they ruled out hepatitis, including combinations of various types of it?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 14 Apr 12 - 02:13 PM

All I can say is, keep the faith.

Thinking of youse often.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Hollowfox
Date: 14 Apr 12 - 01:34 PM

The $#@!-reduction candle series is already fired up for you and yours. Thanks for keeping us posted.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 12:17 PM

Well they still haven't sorted out the pain she is in. As soon as the meds start wearing off she is in too much pain to cope. The joint pain is not the problem uncomfortable as it is. It is the pain in spleen and / or liver.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 04:44 AM

You gals and guys are so lovely. Thank you very much.

After several days of quiet on facebook from her she started posting a bit yesterday just before and after my bedtime barring one post in the afternoon "Happy birthday mumma from me and angel ... Not out yet but trying to get better for you." Galen is angel spelled sideways.

Her last post is a picture (taken from the IMC of Fairfax Inova) of her steroid swollen and rash covered face and the comment "I look a like a lizard". The rash does NOT look like lupus at all. It looks like loads of freckles dotted with acne. Very strange. We may have seen the end of her creamy complexion, but I am not saying anything. Not a biggie to her as she studied make up with her stage craft degree. She can make herself look like anything from a grimy Dickensian gutter hag to a starlet and she normally enjoys doing it. This is a kid who when she was 14 had orange and black bands put on her braces and when ibuprofen made vessels burst in her eyes thought she looked so cool and could not wait to go to school to show it off.

They are keeping her on the prednisone because it is getting her platelets and white cells up which were both very low. I suppose this is why they need to keep her in the hospital. They have to control the terrible side effects she is getting from the steroid, such as diabetes from that the leg blood clots.

Looks like this team does not want to let her go until they have a proper diagnoses and know she is safe with the treatments. Fingers and everything else crossed.

I haven't heard any more about the pain she has been in. Perhaps she is just so chuffed to not be throwing up anymore,she doesn't notice the pain. Or maybe the mix of meds controlling inflammation of liver and spleen is really doing the trick.

Will be going out to dinner tonight for birthday as we could not get reservation for last night.

Hugs all. Thank you so much. Can't describe how grateful I am for you all.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 14 Apr 12 - 03:56 AM

Happy Belated B'day T!

Glad to hear Hillary appears to be in good hands at least, and her b'friend sounds like a very grounded individual, which must be of great help too.

Any further news as yet?