BS: Mudcat Mojo - VaTam's daughter

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: 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: 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,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: 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: ChanteyLass
Date: 02 May 12 - 09:54 PM

Still praying.

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: 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: fat B****rd
Date: 03 May 12 - 09:47 AM

Sandra said it all.
Charlie.

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: gnu
Date: 03 May 12 - 02:48 PM

Got my fingers crossed.

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: Ebbie
Date: 04 May 12 - 11:03 AM

Refresh

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: 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: 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: 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: 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: 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: 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: 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: 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: 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: 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: gnu
Date: 09 Jul 12 - 08:12 PM

Ts&Ps from here too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 09 Jul 12 - 10:07 PM

what Eddie said.

ending hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 10 Jul 12 - 06:30 AM

I'm wishing you and yours all the very best of kind thoughts and good fortune. VT.
Take care.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 10 Jul 12 - 07:48 AM

ending hugs?

SENDING hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Herga Kitty
Date: 10 Jul 12 - 08:31 AM

Thanks for the update Tam, all best wishes and hugs from me too!

Kitty
xx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 10 Jul 12 - 08:12 PM

Apparently my post made yesterday didn't "take."

I'm glad to learn you are going to get to see your daughter, VT. I assume you are headed stateside?

continued good thoughts and meditations for all of you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 06 Oct 12 - 01:50 PM

Well finally a diagnosis.

"saw the dr yesterday.. and retests came back I deff have lupus and sjogrens and myalgia.. and apparently the sjogrens is what has caused my hypothyriodism and auto immune liver disease... on the plus side I don't have syphilis."

Apparently the first tests produced a false positive on syphilis which is not uncommon. Hopefully the immuno suppressants will get her liver and spleen to calm down and ease some of the pain she is in. She still gets terrible stabbing pain inside when she moves, draws in a deep breath. Pain itself can suck all the energy out of you.

I did have nice visit with Hillie and her fiance and his family. Super nice folks. It was too short.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 06 Oct 12 - 07:03 PM

Wow. The only good thing is that it is better to know than to wonder. When I was diagnosed with lupus after months of no-answer testing it was a great relief; at last we had a goal. In my case it worked; I went into remission, which has basically held for 30+ years.

The best of luck and wishes to your daughter, Tam.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 06 Oct 12 - 07:12 PM

Agreed, Ebbie. Hopefully this is a big step forward.

Ebbie... thread drift... at what age were you diagnosed with lupus? Why/how did it go into remission. I ask because this is close to my heart with a cousin.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 06 Oct 12 - 08:01 PM

At least she now knows what she is dealing with. Continued good thoughts....

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 07 Oct 12 - 07:36 AM

wonderful news - getting a correct diagnosis is the start of treatment & healing

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 07 Oct 12 - 02:38 PM

What Sandra and Janie said, VT.
Best regards from Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 20 Oct 12 - 09:23 PM

I hope her treatment goes well.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 20 Oct 12 - 10:37 PM

VATam, how is your daughter's treatment going? I hope she responds quickly and well.

I didn't see the followup on this thread and missed gnu's question. I was 31 when I developed the 'butterfly' rash and after a year of non/mis-diagnosis lupus was finally given as the answer. It was treated as a derma problem and the treatment was primarily cortizone cream.

This was back in the days when doctors thought that there were different versions of the disease, i.e. the systemic type and the skin type. Nowadays they accept that they are different stages of the same disease, and some people don't reach the same stages.

10 years after the first diagnosis when I was 41 I came down with the more severe aspects of the disease and was treated with high doses of prednisone and several other joy-making things. I started with what I thought was flu in February of that year, by April I had to stop working, my worst month was June and I had my last shots in October, all in the same year, 1976. I have not had any real problems since.

I was incredibly lucky. I wish the same for your daughter, Tam.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 21 Oct 12 - 03:37 PM

More crossed fingers here, and heartfelt wishes, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Jan 13 - 03:01 PM

Hilary is being treated with Hydroxchloroquine and Methotrexate and Levoxothyrine for the autoimmune problems and Vitamin D for the deficiency, same as me. So far she is having a lot of long bone pain as I am. She like me has decided to wean off of pain meds because she worries about the side effects and the dependency.

At the moment her Social Security Disability application (rejected just after Christmas due to lack of GI doctor reports) is in appeal. All the other medical reports from Rheumatology and PCP where good strong reports supporting her application. But she needs the one from GI because it evidences that 2 organs are compromised by her condition.

Turns out her gastroenterologist office was over charging for reports to send to her SSA lawyer and then not sending them or providing test results with no narrative which is required.

Hilary sent a very strongly worded email to his office today about the lack of answers and poor quality of care she had received since being referred over a year ago. Remember before she ended up in hospital the GI doctor had one appointment with her and then relegated her to one of his PA to deal with. This PA only wanted to talk about Hilary's diet. It was a few weeks following this she ended up in hospital for over a month with enlarged spleen, low red and white blood count and inflamed liver.

Anyway back to the letter. Today GI office staff called Hilary to tell her that they would refund her the charges they made for the reports and to advise that the doctor will not provide narratives and he will not say why.

Need prayers that this doctor will provide the needed narratives to go with test results and that he will not intentionally muck up her actual care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Jan 13 - 03:07 PM

And while we are at it, I think it is disgusting for any doctor to charge for needed reports on patient. Christ sake. She lost her job almost a year ago. She's living hand to mouth and occasionally tapping me for medical and prescription copays. Where is she supposed to get the money to pay for reports required by Social Security Disability?

Another case of the rich robbing the poor.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 14 Jan 13 - 08:57 PM

I am so sorry that this has happened to her. Red tape is hard enough to deal with even when it is not twisted.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bobert
Date: 14 Jan 13 - 09:12 PM

Keep fightin'... You will win...

B~

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 14 Jan 13 - 10:57 PM

what Bobert said

love & hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Keith A of Hertford
Date: 15 Jan 13 - 03:20 AM

I hope sense and compassion prevails.
Best wishes,
keith.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: wysiwyg
Date: 15 Jan 13 - 08:20 AM

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VTam on another PC
Date: 15 Jan 13 - 12:33 PM

Hil just got email from GI stating that he won't provide narrative because her problems are her own fault and has discharged her from his practice. He will not see her any more.

Also they charged her account for those reports withough notifying or invoicing her. They just showed up in her bank statement.

Can they do any of the above?

I told her to get statements from her PCP and her Rheumatologist stating that she is a cooperative patient and that her condition Sjogrens and Lupus is known to involve organs such as liver and spleen. Her spleen has been a problem since she was 14 so I don't think the GI can accuse her of drink problem. Besides she was too ill to eat or drink much of anything for months early last year.

arrghhh

Calling all help.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Jan 13 - 01:38 PM

Good grief

Long email from GI stating Hilary did not do what was advised, namely see Rheumatologist and Endocrinologist.

1.   she tried repeatedly to get appointments with both. Repeatedly refused without referral from doctor.
2.   She finally go appoitnment with Rheumatologist and ended up in month long hospital stay just before the appointment. When she got out of hosp the nurse at GI office refused to refer her again.

3 endocrinologist finally saw her while in first hospital and only wanted to talk about the diabetes. Did not believe her diabetes was steroid induced which is was proven to be as soon rheumtologist in Maryland (she finally got one to see her after she moved from northern Va to Md with her fiance) weaned her off of steroids. The diabetes went away.

there is so much more.

anyway Her social security lawyers are on it. They are talking to GI now and they are not happy about his and his staff's treatment of Hil. Seems they have been bullying her and also butting charges on her credit card illegally.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 15 Jan 13 - 02:13 PM

"anyway Her social security lawyers are on it." And other statements.

I hope they fry the bastard and I hope they can aid in her problems getting proper care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Jan 13 - 02:15 PM

arrghh arrghhh arrghhh

Told her she missed appointments with his PAs but it was because she was too ill to drive to them.

He stated in front of one of Hil's friends who drove her to one appointment that he would not put her in hospital for tests he said because he was trying to save her money. So he signed her off work and told her to keep coming into his office for the tests. Which she did for some but became too ill to drive to others. Shortly after she ended up in A&E and lengthy hospital stay.

She has never mentioned it to the GI, she never threatened him. But this email she sent she told him that she did not know why his service is award winning, because she has not been treated well by his staff, they do not give referrals to other specialists that he requested her to see, they charged her credit card without her knowledge.

She ended up in hospital having to have all the tests he had recently done, done again and now charged on her insurance and co pay twice.