Thanks everyone for all the prayers and positive energy, I really appreciate them. I've got some serious health issues going on, in addition to my chronic pain. I know some of you knew that I'm trying to get rid of warts that I've been unable to fight off, as I have NO immune system.
Well, the Dr I'm seeing at NIH, is worried that the Dermatologist is going to do me more harm than good. She's worked with and feels he's a great Dr, but she feels that my warts will come back, and the drug they are using is very toxic, and can cause kidney failure within 48 hours of the infusion. Apparently, my kidney function did change with the last infusion. The dermatologist's resident read the wrong labs to me last Friday she'd contacted me and said they were great. They caught it yesterday, and called me to ask me to repeat my kidney function test on Friday prior to proceeding on Tuesday with my infusion here at my home.
While they were trying to reach me I was with the Dr at NIH, and she said until we figure out what my problem is with my immune system and IF they can get me off steroids, she truly believes the warts will return. She told me, and the oncologist agreed with her, that this drug should NEVER be given at home. She's also worried that I haven't seen anything happening with the warts yet. She wants to give me something to boost my immune system but that will cause issues with my auto immune disease.
The Dermatologist has only treated one other patient with this drug, and he said that this patient had a worse immune problem than I do. Every Dr I talk to has their opinion, and now I'm totally confused and I'm not sure what or who I should listen to. The patient like me didn't show any signs of change until he had received 4 infusions. However, with my kidney function elevated to the high norm they both are worried now about proceeding forward on treating the warts. It's just not a simple case of warts either, my fingers are deformed from them, they are growing all over me know and literally I feel like the elephant man people stare at my hands and act strange around me. So this is a HUGE problem for me and I've been dealing with the problem since 1999. It was just one small wart on my thumb then.
So I guess what's gonna happen, is I will be admitted to NIH next Monday. The Dr's there at NIH want to run tests and see if they can figure out what's happening to me. I'll need another bone marrow biopsy, 24 hour urine collection, I'll need to see Rhuematology, and once they have determine that the kidneys are good, she's willing to give me one more dose of the drug, and IF I don't see any results, I'm to have NO MORE infusions of this drug. If we see changes we will have to cross that bridge next week.
I feel nothing but severe disappointment, I'm feeling totally alone, despondent, and that no one understands how I'm feeling. My pain is totally out of control and I can't do much on that part. I've called and left messages for my PCM, she prescribes my pain medication or any other controlled substances. I've emailed her at work and at her personal email, and I've not heard from her. This is really unusual for her. I'm guessing that she's either on vacation, OR I think she may be deployed to another military base, or on the USS Comfort.
My Dr is in the military she's active duty and can be pulled at anytime to go TDY. I'll try to contact her administration clerk tomorrow. However, unless I'm being admitted to the military medical center, NO other Dr can prescribe me controlled substances BUT her period. I didn't get to sleep until almost 4 last night and it's currently 3:00 am now. I was up at 9:30 this morning, and I've yet to sleep tonight. I have to be up and going at 8:00am this morning.
The Ativan she gave me for my anxiety doesn't seem to be doing anything at all for me. With my tolerance issues, I'm wondering if the dose is to low to affect me. I also was given some more good news NOT. It looks like I do have glaucoma in both eyes. I also will need my cataracts removed. The eye Dr plans on waiting until April before we do anything. He wants to take photos of my optic nerve. My pressures have been high for years. I'd see an eye Dr and he'd put me on drops, we'd move or the Dr would move and I'd get a new Dr and they would say it isn't necessary to take the drops so stop them. I've been yo-yoing back and forth between drops for at least 15 yrs now.
I'm a total mess and feel like such a HUGE burden to my family, and I truly mean it when I say I'm at the end of my rope and I'm not sure how I'm gonna hang on. Thanks for letting me vent and for being here for me. For those who don't know me I'm dealing with the following issues:
Lupus/RA/Fibro/Pulmonary Hypertension/MDS (Blood disorder), Gastroparesis, DDD in my back, Severe Anemia, Warts to the point of deforming my thumbs and now growing all over my knees, arm pits, etc, Complex Sleep Apena, Restrictive Airway Disease, Myopathy from the steroids, severe osteoporosis, constant pericarditis and pleurisy, and a bunch of other things to many to mention.
I've been taking steroids at about 25mg daily for almost 12 years now, so I have all the terrible side effects from the steroids. I'm taking a drug for my lupus that causes severe depression, anxiety attacks, suicidal thoughts, (6 patients from the clinical trial committed suicide), and it causes insomnia. I'm a total wreck and honestly my pain is holding steady at a solid 8 everyday now.
Thanks for supporting me and keep the prayers coming and the positive energy too. I'm hanging on BARELY with my finger nails. Hope you all are sleeping and having low pain tonight.