BS: VirginiaTam's daughter - health prob

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Richard Bridge
Date: 29 Jan 11 - 06:49 PM

VT - check with a specialist in EU law. Surely my virtue of your marriage you are an EU citizen and she is your daughter. If by virtue of her illness she is dependent on you there are treaty rights. Not my field, but I know a man who might know (and you have even played music with him)

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Bobert
Date: 29 Jan 11 - 08:28 PM

Have your daughter contact a social worker @ MCV (Medical College of Virginia) in Richmond... I know they are a first rate hospital and a teaching hospital and your daughter might get treated there for free, or sliding scale...

BTW, MCV might be found under VCU-MCV...

B~

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Ebbie
Date: 30 Jan 11 - 06:12 PM

Refresh

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 01 Feb 11 - 03:46 AM

Thanks all.

Bobert - She is in northern VA with no car. MCV is a bit of a trek. But if she gets so ill that she cannot work, I will move to my Mom's in town near Richmond and take Hil with me. There is room and family with cars to help.

Richard - Even if we could get her here on technicality, I can't support her financially. I don't think she would submit to a move that far away from friends and boyfriend.

Latests news - not much. She is very tired. Finding even taking a shower utterly exhausting. And I am very worried.

Hoping her appointment this Friday the primary care doc will start prescribing what is needed to make her better and feel better.

She is so worried about losing her job.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: billybob
Date: 01 Feb 11 - 09:21 AM

Oh Tam, so sorry to hear this. As you know my daughter has Crohns desease, and even when she is well we worry about her. Wish we could help but you are both in our prayers and thoughts.I know she is worried about her job but her health must come first,as must yours!!Keep strong ,hope good news comes to you both on Friday xx
Wendy

Subject: RE: BS: VirginiaTam's daughter - health prob
From: GUEST,Patsy
Date: 02 Feb 11 - 07:55 AM

VT - I think it would be best if your daughter approached her HR to let them know exactly what the situation is rather than hide it.   It is easy to say when worrying about jobs but it is best to get it out in the open from the start. It would be better for both of you. Best wishes to you both and hope Friday brings good news. Take care.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 02 Feb 11 - 05:41 PM

Right Patsy... She has shared her ER test results with employers who are all apparently behind her. She thinks it is because of how conscientious she is about work. She pushes herself to go in when she feels dreadful and they know it.

The MRI results are back and have been forwarded to primary care doc who can't read them. So Hil has to wait to find out if she still has appointment on 16 Feb with gastro specialist, because she understood that he discharged her back to primary care after arranging MRI and blood tests.

She is confused and too tired to deal with it. I am hoping her friends or boyfriend will step in to help her push for complete diagnosis and start of treatment.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: ChanteyLass
Date: 03 Feb 11 - 01:29 AM

Nightmare! Primary doc can't read them? Huh? Hope gastro doc (I call mine GastroGuy) can help. I also hope her boyfriend or another friend can help.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: My guru always said
Date: 03 Feb 11 - 04:32 AM

Sending positive thoughts!

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Ron Davies
Date: 03 Feb 11 - 08:32 PM

I know a woman who has an auto-immune disease.    Seems to be genetically related.   Her problem has to do with the back, not internal organs.   At any rate, she has tried two drugs to combat it:


Humira:   administered by shot.    Had no positive effect.   But lots of negative ones.   Specifically, since she already also has asthma, she developed pneumonia--double pneumonia in fact.    An unavoidable side effect of these drugs is to lower your resistance to anything going around.

Methotrexate:   much, much better.    Up to now (several months), no side effects.   Also it's a pill, not a shot--easier to administer.

If you'd like to PM me, Virginia, I can give you more details.   But of course, as I said, her problem has to do with her back, so it may not be germane.

Ron

Subject: RE: BS: VirginiaTam's daughter - health prob
From: gnu
Date: 03 Feb 11 - 10:24 PM

"The MRI results are back and have been forwarded to primary care doc who can't read them."

Grrrrrrrrrr... is all I can say... how frustrating!

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Ebbie
Date: 03 Feb 11 - 10:32 PM

"not able to read" the MRI.

Not unusual at all, of course. Think of the standard, every-day Xray. An MD may "read" it but the actual, formal analysis is done by the radiologist.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: ChanteyLass
Date: 04 Feb 11 - 12:29 AM

I was assuming that what the primary physician got was the analysis of the MRI. When I get a mammogram, the doctor gets an analysis of that, not the actual images.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: mg
Date: 04 Feb 11 - 12:33 AM

Read up on coconut oil and immune diseases..good for Crohn's disease.

http://www.coconut-oil-central.com/coconut-oil-autoimmune-disease.html

Also..read up on leaky gut syndrome and its relation to gluten..I would recommend she get off gluten and see if things improve.

I would also recommend going to a good naturopath..sometimes they can do wonders with chronic types of diseases. mg

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 04 Feb 11 - 01:53 PM

Thanks Ron

I have autoimmune rheumatoid arthritis and am on methotrexate... note very effective for me because when I am in flare I am in flare. All it does is make me nauseated, causes my hair to fall out and get sores that won't heal on lower legs.

Anyway. They treat autoimmune hepatitis (which is what we suspect Hil has) with high daily dose of prednisone eventually weaning down. Side effects not very nice for a young woman, which are weight gain and facial hair growth.

Just wish they would get her sorted out and started on some treatment.

Thanks all. Keep the thoughts going. She still very rough, though she has been going to work.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: gnu
Date: 04 Feb 11 - 02:33 PM

prednisone... I am still suffering from the reaction side effects (rash and itch) of that stuff from late December... 2009. My sympathies.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Ebbie
Date: 04 Feb 11 - 02:42 PM

I too was on prednisone - from February through October that year. Heavy dosage, the doc said, meant to send me into remission. Which it - or something else - did. That was back in 1976. I have a few residual effects but nothing major.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Ron Davies
Date: 04 Feb 11 - 09:20 PM

Virginia--Is humira an option? Is it worth exploring?

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 05 Feb 11 - 04:14 AM

getting frantic... she has not posted to her facebook nor messaged nor called me about yesterday's appointment. but the boyfriend is with her this weekend after what he said was too many days away from her.


praying the news from doc was not too terrible, yesterday.

re the humira... she should do whatever the docs say, especially since her insurance only covers what the docs prescribe.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 05 Feb 11 - 04:14 PM

Primary care has referred her back to gastro. Appt this Monday. PCP also intimated she might be admitted to hospital by gastro, but did not say why. Only be prepared to stay.

She has extra insurance (her Dad got for her), which will cover 8 or more days out from work and lots of hospital stuff, ER, tests, pays her cash if she has surgery.

He is working all that out for her.

More prayers and thoughts please....


Yes I am begging. I can't help it. Hoping for best while fearing the worst.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: My guru always said
Date: 05 Feb 11 - 04:30 PM

Still sending positive thoughts to You and Hilary!
Hils

Subject: RE: BS: VirginiaTam's daughter - health prob
From: gnu
Date: 05 Feb 11 - 04:33 PM

Me too. Try to keep the faith as best you can.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: maeve
Date: 05 Feb 11 - 05:03 PM

Morning, noon, and night, Tam.

Maeve

Subject: RE: BS: VirginiaTam's daughter - health prob
From: ChanteyLass
Date: 06 Feb 11 - 12:38 AM

I am keeping you and your daughter in the Light. I wish everyone in the US could get the quality of care Ronald Reagan got when he had Alzheimer's and Gabrielle Giffords is getting now.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Herga Kitty
Date: 06 Feb 11 - 08:26 AM

Thinking of you both....

Kitty
xx

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Maryrrf
Date: 06 Feb 11 - 11:49 AM

Wishing the best for you and your daughter Tamara. One of the downsides (and there are many) of the American health care system is that you aren't just worried about getting well, you're worried about the bills. But she's getting plenty of Mudcat mojo, and that works!

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 07 Feb 11 - 03:03 PM

refresh...

I hate being stuck here not knowing what is happening.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: fat B****rd
Date: 07 Feb 11 - 03:35 PM

I wish I could say something clever or reassuring VT, but please know that I, and many many others here, are thinking of you and yours and sending our best possible thoughts.
With all best regards as always.
Charlie

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Janie
Date: 07 Feb 11 - 08:52 PM

All good thoughts to you and Hils....

Subject: RE: BS: VirginiaTam's daughter - health prob
From: wysiwyg
Date: 07 Feb 11 - 11:20 PM

Yup, here too.

~Susan

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 08 Feb 11 - 02:38 AM

Not admitted to hospital. Given Vicodin for pain, a note to get off work and plan to have needle liver biopsy and endoscopy arranged per the way her insurance will cover it, which was not admission to hospital at which the specialist works.

Doc says it is not the liver causing her pain. Endoscopy is to find out what else may be happening. She has constant nausea and pain.

Work has all but threatened to fire her, so she is more stressed and in more pain than ever.

Don't know whether to be relieved that hospital admission was not considered critical at this point or scared that insurance coverage may be impeding proper diagnosis and treatment.

Thank you all for hanging in there with me.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: SINSULL
Date: 08 Feb 11 - 08:58 AM

Try to stay focussed on your daughter, Miss Tam. Her job, the medical bills, etc are only a distraction at this point. Her health and proper care is all that matters. Your health and sanity are critical to her well being.

You both have my prayers.
Mary

Subject: RE: BS: VirginiaTam's daughter - health prob
From: GUEST,mg
Date: 08 Feb 11 - 12:45 PM

Ginger can work for nausea..in form of tea..candied ginger etc. mg

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 08 Feb 11 - 05:36 PM

been chatting with Hil all evening... she is so dejected. HR confirmed that she will probably be let go. That means her insurance goes.

The pain in her left abdomen is so bad it makes her dizzy and she can't help moaning and crying. Pain killers (tylenol 3 and vicodin) only works for an hour then she has to wait for 3 or 4 hours before she can take again. Spleen is 18.5 cm which is pretty big considering it is only supposed to be the size of one's fist. She has tiny hands.

They are planning ultrasound on gall bladder on 15th and she sees doc again on 23rd.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Herga Kitty
Date: 08 Feb 11 - 06:09 PM

And Andrew Lansley thinks the UK NHS should be contracted out to competitive private enterprise...

So sorry that you and Hil are going through all this - all best wishes and hugs.

Kitty

Subject: RE: BS: VirginiaTam's daughter - health prob
From: GUEST,mg
Date: 08 Feb 11 - 06:11 PM

Could it possibly be gallstones? Removal of gallbladder? People do well after that, watching diet etc...and pain is gone I believe..I hope it is something that can be fixed. mg

Subject: RE: BS: VirginiaTam's daughter - health prob
From: GUEST,mg
Date: 08 Feb 11 - 06:12 PM

That did not sound right...I hope there is a wonderful solution...mg

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Andy Jackson
Date: 08 Feb 11 - 06:36 PM

The nearest I can get to praying is to care. I have read and re-read this thread often and felt so helpless, I haven't even had words to offer. Somehow there is a love between Mudcatters who often haven't even met that transcends everything logical. I read your story full of tears of frustration that in this day and age the great American system is so much worse than ours in caring for its people.
Please let me add my hopes and prayers, such as they are, for your daughter, yourself and also her obviously devoted boyfriend.

Andy

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Andy Jackson
Date: 08 Feb 11 - 06:43 PM

Hi Tam, I have just been reminded that we have in fact met. Up in the song loft at Moira Furnace last year.
XXXX

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Janie
Date: 08 Feb 11 - 07:41 PM

Tam, she should be eligible to keep her insurance under COBRA, though it will have to be paid for. Maybe you and her Dad and her boyfriend could all chip in to cover the premium?

Subject: RE: BS: VirginiaTam's daughter - health prob
From: GUEST,mg
Date: 08 Feb 11 - 08:16 PM

If she is let go from her job she should be eligible for social security disability...you would hope..and perhaps medicaid...mg

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Janie
Date: 08 Feb 11 - 09:59 PM

Just peeking in to say hi, Spaw and Karen.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: Janie
Date: 08 Feb 11 - 11:10 PM

Oops. Now I know why that last post didn't show up on the Spaw thread.

Lost track of which door I was peeking through right at that moment.

Get better, Hils, and head on over to the Mudcat Recovery Ward. Sinsull promises you won't have to share a room with Spaw.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 10 Feb 11 - 03:09 PM

From MRI

Spleen: is significantly enlarged measuring 18.5 in AP dimension. Few splenorenal collateral vessels are also noted in the left retroperitoneum

Gallbladder: Sludge is contained within otherwise unremarkable appearing gallblader there is no evidence of intraheptic extraheptic biliary ductal dilation to suggest obstructive cholangiopathy

Pancreas: normal

Liver: There is atrophy of the right heptic lobe with compensatory hypertrophy of the left heptic lobe. There are features of advanced portal hypertension which include dilation of the intraheptic portal veins 1.9cm main portal vien 1.7 cm and splenic vien 1.5 cm there is recanalization of the umbillical vein as well.


She got the appointment to see liver specialist moved to the day after the gallbladder test on 16. They have doubled her dose of pain killers which is really fogging her brain. Chatting to her on facebook takes some thinking on my part. Almost like she is talking sideways in a Yoda esque way.    Well that is how the messages come out.

She exhausted herself making the bed. Can't face taking shower and prettying up for boyfriend. I told her just take the shower and then a nap. You don't have to fix hair and do make up when you are sick.   She said she is so white. As white as her moonstone ring and has to put some makeup on for colour.

She can still only manage a couple of bites of food and then the nausea takes over. Pain is when she sits too long and when she moves even a little. Weird cravings for chocolate and garlic. (No she is not pregnant) and uncontrollable anger and frustration.

Boyfriend on way to spend this evening and tomorrow with her. I am grateful for a young man named Galen. I call him Angel and told him the letters of his name rearranged perfectly.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: gnu
Date: 10 Feb 11 - 03:25 PM

"... uncontrollable anger and frustration."

I would think so.

Hang tough. T&Ps from here.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: maeve
Date: 11 Feb 11 - 02:40 PM

Thinking of you both, Tam.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: wysiwyg
Date: 11 Feb 11 - 04:41 PM

Answers seem to be coming in tho, so hopefully accurate treatment is soon to follow (and that is what I'll pray for) as well as PEACE for all-- yummy, delicious, comfy, cuddly peace.

VT, be thinking about all the love you put into that girl, and remember that she is chock-FULL of it, and how strong love is, and that she has all that strength PLUS Galen's.

And YOU take GOOD care of YOU, too, please.

~Susan

Subject: RE: BS: VirginiaTam's daughter - health prob
From: VirginiaTam
Date: 13 Feb 11 - 10:39 AM

Well the increased pain killer did have her feeling better enough to tackle some house cleaning with the help of the boyfriend on Friday. Bad idea. She is not feeling well now.

She only found out yesterday from the physician's assistant that she should only be taking fluids and soft solids. Why no one told her this before, we don't know.

Subject: RE: BS: VirginiaTam's daughter - health prob
From: gnu
Date: 13 Feb 11 - 11:06 AM

That is truly aggravating!

Subject: RE: BS: VirginiaTam's daughter - health prob
From: jacqui.c
Date: 13 Feb 11 - 11:36 AM

Still sending good thoughts to both of you.