Quick Update

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

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.

I am keeping you in my prayers. I hope we hear a good report soon.

Hugs,
Mary Ann

Hey Barbara,

My heart goes out to you!!

Love and Hugs!! laura

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 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 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

I'm glad you're getting the help you need.
You see He does answer prayers.

Hang in there and keep fighting.

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 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.

I'm glad that you already have the equipment, sorry that you have to use it of course.