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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/12/2013 10:51 PM (GMT -6)   
Hey All,

Well, I'm currently in my bed at NIH. I arrived at noon today, they have me on a special isolation ward. I have a roommate but she a member of a clinical trial, she's one of the healthy patients in the trial. She apparently does any studies here said she made over $1,000 last year. She was paid $90 to lay in the MRI scanner for one hour.

Anyway, she will leave in the morning. Not sure if I will get another roomie or not. I'm currently working on my 24 hour urine collection. Tomorrow I will have a bone marrow biopsy at 1:00. Oncology plans to see me, as well as Rhuematology, and pulmonary.

Depending on my kidney values will determine if I will get the medication for the warts.

I really hope things goes well, this is a very good research center. Some of the top Doctors work here and do research. I hope and pray that the can figure out what's really going on with me. Please pray for that for me.

Hope you all have a good week.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/12/2013 11:29 PM (GMT -6)   
Just an added note, nurse just brought me a bedtime snack,as I have to be NOP (nothing by mouth) until after my bone marrow test at 1pm tomorrow .

Looks like I've hot a ham and cheese sandwich, raisins, granola bar, string cheese, and juice.

So I'm off to eat my snack.

Have a good.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/13/2013 1:52 AM (GMT -6)   
Sounds tasty! Not the testing though... ;)

I hope they can get things treated good. I hate that you've got to deal with these warts on top of everything else.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/13/2013 4:07 PM (GMT -6)   
Will keep you in my prayers..hoping all goes well and you get the answers and results I know you're hoping forh,

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 2/13/2013 5:58 PM (GMT -6)   
I am keeping you in my prayers. I hope we hear a good report soon.

Hugs,
Mary Ann :-)

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 2/13/2013 8:41 PM (GMT -6)   
You are in my prayers. Hope all goes well. Even with a snack its going to be a long time to 1pm.
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/13/2013 8:56 PM (GMT -6)   
Hey Barbara,

My heart goes out to you!!

Love and Hugs!! laura

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 2/13/2013 10:34 PM (GMT -6)   
Sending prayers and good hopes for the best outcome!

Lucy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/15/2013 5:11 AM (GMT -6)   
Thanks all for your prayers and well wishes. I found out last night I have two broken ribs. I have NO idea how I broke them. The Dr said my X-ray shows just how very thin my bones are sad sad It's from my long term steroid use.

I have been finally accepted into a clinical research study here at NIH. I can withdraw at any point, but I'm in the study for the remainder of my life unless I withdraw. NIH is right across from the military hospital I go to. So the Drs here are talking with my military Drs. My PCP did say she's more than happy to talk with them, but she WILL NOT attempt to tell them how to treat me.

She said the Drs here are the BEST OF THE BEST, AND THE EXPERTS. So she and my other military Drs will deferr to NIH.

I did get another dose of the IV cidiovair to attempt to kill off my wart virus. My Infectious Disease Dr probably will NEVER give me another dose. She found that I only am using 2/3 of my kidneys. This drug is VERY TOXIC skull skull skull to the kidneys, this drug can cause kidney failure in 48 hours after getting it. I'm certain she's going to discuss my situation with the dermatologist at the other Medical Center. She's worked with him and she speaks highly of him, but he's only treated ONE other patient like myself. My NIH Dr feels until we solve my immune deficiency disorder, she thinks the warts will grow back and they may HARM me rather than HELP ME.

She also noted that my CO2 levels are elevated, she is uncertain as to why. This a serious problem though the higher the count the more unresponsive I become. My hubby came home last Thurs from work and found me unresponsive , he said the TV was on really loud, I was laying on the couch with blueberry syrup poured down the front of my pj's and I was making my "death rattle" as he calls it. All I remember was being really tired, but I was starving so I warmed a frozen pancake in the microwave and had sat down to eat, and I remember NOTHING after that.

My hubby and daughter both worry he's gonna come home and find me dead. The other strange thing is my T4 is lower than an AIDS patients normally is.

We've been praying for years that I could get accepted into a research study here, and that prayer has been answered. Please pray or send positive energy that they can now figure out all my life threating complex medical issues.

Thanks for reading the post. I certainly hope you are all sleeping and not up like me LOL, I've been up since 6am yesterday.

Hugs,
Barbara

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/15/2013 8:37 PM (GMT -6)   
Barbara,
Sending all my love and prayers to you ....keep the faith and keep fighting....one big prayer has been answered...

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/15/2013 10:14 PM (GMT -6)   
I'm glad you're getting the help you need.
You see He does answer prayers.

Hang in there and keep fighting.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

lillash
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 2/16/2013 8:23 AM (GMT -6)   
Glad to hear things r happening for u. However I have query u could help me with... I m interested to hear about ur warts as I have noticed I have quite a few coming up on my legs... I used to have one yrs ago n its was burnt off or freezed ed n fell off now several years later all these little flat ones r appearing I never thought anything of them until I noticed ur comment is this lupus related?
SEVERE LUPUS since 1994, Rashes, RA, Polyarthritis, Sicca Symptoms, Pluersy, Mouth Ulcers, Alopicea, Pleuisy, Pancreatitis, Pancytopenia, Epilepsy, Psychosis, Depression, Avascular Necrosis - bilateral hip replacements, Endocarditis, Lupus Nephritis IV & V, Dyslipidemia, Osteoprosis, Pericarditis, Recurrecnt Furuacles, Hepatitis, Neutropenia, Glactorrhoea, Cholecystitis

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 2/24/2013 10:53 AM (GMT -6)   
So happy and impressed that you got into the NIH study. NIH definitely is the best of the best. But I know you only got in because of your serious health issues. You're always in my prayers, Barb.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/24/2013 1:50 PM (GMT -6)   
Thanks Patty, yes you are right I was accepted cause of how seriously ill I am. I just hope they can help me.

lillash, I'm not sure that lupus is the cause of my warts. I had a couple small ones prior to going on steroids or immuno suppressive drugs.

Since my immune system isn't there I can not fight off the virus that causes warts. They ran some tests and found out that my T cell counts are lower than most AIDS patients. Therefore, the Dr's at NIH feel that I have a immuno deficiency disorder, but it's not HIV/AIDS.

I've received so many units of blood since 2004, I was wondering about HIV. My warts are so bad on my thumbs they are deformed and I can't use them for fine motor skills anymore.

I would think if you are on immuno suppressive drugs, I'd talk with your Dr about trying to remove them. I hope you can get rid of them.

As for me I'm really struggling now, my Rhuemy had me back my steroids off by 5mg and I'm sure feeling it. My pericarditis is starting to act up and I may end up needing a biopsy of my pericardium.

My broken ribs still hurt like heck, they pop everytime I get up and start moving around. They said it would take 6-8 weeks for them to heal, and the best way to quickly heal them would being still, which that's impossible.

Hope you are all having a good and low pain days.


Hugs,
Barbara

rhnicks
Regular Member


Date Joined Jan 2013
Total Posts : 27
   Posted 2/24/2013 6:03 PM (GMT -6)   
Barbara Lee said...


She also noted that my CO2 levels are elevated, she is uncertain as to why. This a serious problem though the higher the count the more unresponsive I become. My hubby came home last Thurs from work and found me unresponsive , he said the TV was on really loud, I was laying on the couch with blueberry syrup poured down the front of my pj's and I was making my "death rattle" as he calls it. All I remember was being really tired, but I was starving so I warmed a frozen pancake in the microwave and had sat down to eat, and I remember NOTHING after that.

Thanks for reading the post. I certainly hope you are all sleeping and not up like me LOL, I've been up since 6am yesterday.

Hugs,
Barbara


Barbara do you have sleep apnea by chance? If that has not been mentioned you might want to do some research on the elevated co2 levels and using cpap therapy.

I hope that you get some relief soon.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/24/2013 9:36 PM (GMT -6)   
Yes, I know all about sleep apenas. I have complex sleep apena, I have both OSA and Central sleep apena. I use a VPAP Adapt SV, when I sleep at night, with 3 liters of oxygen hooked into it.

Even though I use my VPAP faithfully every night, if I sit down during the day and drift off, it only takes about 15 minutes before I start to make my "death rattle" as hubby and daughter call it. I've been rushed to the hospital on several occasions. One of the trips ending with me on life support for 5 days. My family truly feel that I've cheated death several times now, and they worry my luck will run out soon.

I use oxygen 24/7, as I have pulmonary hypertension and restrictive airway disease. Also having myopathy from long term steroids use has caused the muscles used to take in and blow out deep breaths are so weak that my PFT's show I only have 50% lung function.

Like I said my CO2 levels are always elevated, I also turn a vivid purple when I do things to quickly. My hubby and daughter live with the day to day worry, will they come home and find me dead.

Last Tuesday night is a prime example, I woke up and needed to use the toilet, I went came back to bed and was so tired I forgot to replace my mask. Lucky for me my hubby can hear me at night. He worries about me being home alone durning the day. He WILL NOT allow me to sleep anywhere but next to him at night and if he's away, our daughter who is 20, sleeps with me. I feel so much like a burden to them and I feel terrible that they worry about me dying.

Thanks for the suggestion at looking into sleep apena tho. Right now I KNOW I'm not getting enough air in or out as I have two broken ribs on my left side.

Hugs,
Barbara

rhnicks
Regular Member


Date Joined Jan 2013
Total Posts : 27
   Posted 2/24/2013 9:55 PM (GMT -6)   
I'm glad that you already have the equipment, sorry that you have to use it of course. :-)
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