BS: Mudcat Mojo - VaTam's daughter

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Maryrrf
Date: 08 Apr 12 - 08:50 AM

At this point it probably is difficult to distinguish what symptoms are due to illness, and what symptoms are side effects of all those medications. I hope they get it sorted soon - and there's a good chance they will. Mudcat Mojo has worked many miracles.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 09 Apr 12 - 12:53 PM

It is looking more and more like lupus. She is very worried by the hallucinations and the sudden very blurred vision. She can't cope with looking at PC screen very long, light hurts.

She now has skin and nail problems cropping up. Hilary has always had beautiful skin and nails, very meticulously cared for.   She says she now looks like a lizard.

She has help from Galen's dad filling out Social Security Disability forms. She has been working since she was 15, even during university years. She will be 27 on 21st June.

Galen's parent's are remodeling their basement into a small apartment for them move into if it comes to it. The worry is, Hilary cannot manage steps. She cannot drive with her vision problem and cannot bend at the waist without excruciating pain.

This post is a bit all over the place. Down to being a one armed bandit (RA in left wrist very bad) and the pain killer I am taking to make it stop throbbing (making me fuzzy headed).

Thank you for all your good wishes. Please keep them coming.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 09 Apr 12 - 03:37 PM

Is she on a gluten-free diet? That can aggravate at least autoimmune problems if you are sensitive...mg

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

started new nausea meds which is really working
received the glucose test kit
she knows about the gluten free and low sugar and is following it
rash is yeast caused by prednisone
she has now lost 20 pounds

she is growing up.... the friend that bailed on her last year when she was sick, just did so again as soon as she found out Hil was in hospital. Blocked her phone and facebook. Hil has decided not worth the stress. She is determined not to stress.


Atta girl!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 10 Apr 12 - 06:06 AM

Good for Hilary; that's not any kind of a friend.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 10 Apr 12 - 11:51 AM

That's a friend?????

That's someone she does not need in her life.

Lupus is serious but can be controlled. Hope thay finally have the right diagnosis.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 04:38 PM

Guys I really need you to pour it on.

Hil is back in hospital, sugar 722, violent vomiting and excruciating leg pain.

She is having a diabetic reaction to steroids and they think blood clots.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 05:06 PM

We're here, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 05:46 PM

from Galen's facebook

The doctor in the ER, after hearing about all that has been happening with Hilary, was absolutely livid that no one has gotten to the bottom of this yet. The official word this time is that Hilary went in to a steroid induced diabetic response, because of the Prednisone she is on. However, they have decided to keep her on that medicine because it is surely helping with her splenomeglia. They have done three more ultrasounds, one specifically of her liver: results pending. They believe she may have some blood clots in her legs, which they will attend to. Although they are definitely going to screen for it, the doctor does not believe Hilary has lupus. And although there may be no apparent signs of Addison's Disease, both Hilary and I have requested she be screened for it, as well. As of when I left the hospital for today, Hilary was not suffering from any nausea, was well hydrated, had received insulin injections, and had been able to eat a good portion of a healthy lunch.

He added requests for prayers and later a bit about the nursing staff at this hospital making disparaging remarks about the quality of care at the first hospital she was in. Don't know how true or helpful that was, but there it is. She is there and I am not with her and I hate it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 05:50 PM

You must be feeling such frustration, Tamara!

Galen's post strongly suggests he is paying close attention, dealing responsibly with staff, and that he saw a vast improvement in Hilary's immediate condition before he left the hospital. Good for him!

I'll check in here again before bedtime.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 12 Apr 12 - 06:22 PM

I agree with Maeve. No pain and able to eat is a huge step in the right direction.
Hold on to that
Mary

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 06:28 PM

thank you both. It is nearly 11.30pm here. So going to bed. There won;t be anymore news tonight. Wonder if I will sleep much?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 06:53 PM

Sleep well, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 12 Apr 12 - 08:42 PM

I am also still here and praying.

I was looking for The Short Sisters singing this song, but couldn't find them doing it. Here are other performers. I hope it will help you sleep. http://www.youtube.com/watch?v=ZnbU6PAXvoY&feature=related

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 13 Apr 12 - 12:09 AM

Holding her and you in a circle of Light. She is safe for the night and will be better, even more so, tomorrow, I'll bet, so maybe you can get some sleep knowing that? It's good someone actually understood and is doing something about it.

Sleep well,

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 13 Apr 12 - 03:55 AM

Haven't checked in for a while, sorry to hear the latest news, lets hope this hospital can find out what is wrong and help your daughter recover. thinking and praying for you all.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 13 Apr 12 - 04:21 AM

Hang on Tam, hang on. We're with you. Reading Galen's Facebook entry has made me feel a bit better. Love to you -

B xxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 13 Apr 12 - 04:30 AM

Morning all. Thank you for your thoughts. I didn't sleep too badly (woke 3 times) but when I woke at 4.21am I just stayed up. It is tough being on a different time zone. Have to wait until people are awake to get news. Not exactly how I planned to spend my birthday.

My only wish this year is for Hilary's good health!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 13 Apr 12 - 06:19 AM

may your wishes come true

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 13 Apr 12 - 11:16 AM

Ditto Sandra.

Happy Bday VTam!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 13 Apr 12 - 02:28 PM

Happy Birthday, Tam! May this be the beginning of a very good year for both you and your daughter.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 13 Apr 12 - 05:16 PM

Happy Birthday! You are at the top of your yearly cycle now...a good time for new beginnings and an upswing in things! May it be so for you and for your daughter.

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 13 Apr 12 - 07:53 PM

Hope you have allowed yourself to celebrate today, VT. You are worth celebrating, you woman of fortitude!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 13 Apr 12 - 08:58 PM

Include yourself in that Janie. We women of fortitude. Some of us, no matter how much S@@T life throws our way manage to face it squarely and with grace.
Hil is certainly one. I would love to meet her some day.
Celebrate your birthday Miss Tam and some small victories.
Love,
M

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 13 Apr 12 - 09:27 PM

Happy birthday~

My wishes for you are also wishes for your daughter: correct diagnosis and treatment and improvement in health.

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?

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: 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: 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: 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: 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: 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: 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: 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: 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: 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,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: ChanteyLass
Date: 15 Apr 12 - 07:35 PM

What I don't know said.

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: 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: 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: 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: 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: 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: 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: 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 - 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 - 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 - 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: 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.