So, I must apologize for not blogging for a while. My hands have been working against me & painful. It is also hard to motivate myself to do much.
Today, I have duct tape surrounding almost every finger... so it is making it possible to type, yet also very difficult to type. Why do I have duct tape around my fingers? Well, I used to do this all the time years ago... but just got fed up with it... frustration has led me to it again.
So, let me just give a brief run through. I have been going back and forth to NIH every 2 weeks, sometimes 3. Been joggling over half a dozen oral meds alone. Different antibiotics, antivirals, antifungal, anti inflammatory, painkiller & steroid. Since a little before Christmas I have been treating my lungs for two things- pneumonia and Histoplasmosis. How long, months most likely, had I been going without a diagnosis, so therefore no treatment? I don't know. They try not to radiate Karly & me too much... so we try to span out when we do certain scans.
The meds I've been taking have been improving my lung health... to a certain extent. But the Histo takes months to treat & the meds for it have been making my liver function tests go a little wacko. Also since before Christmas I had been taking my study drug- which also seems to make my liver unhappy. Now, being on one & not both seems to keep the numbers we want in a good range. But being on both has the effect of high levels & then they don't come down. Becuz of this, the study drug takes the back burner (docs using caution). I have been on/off my study drug & getting blood drawn 2x or more weekly to see when the levels came down enough so I could get back on it. So after doing this for several months the docs worry about long term liver damage... Long story short- I'm off my study drug :'(
I feel like I got my hopes up... thought I might actually get my hands back from this virus that torments them (sooner/pre-transplant).. and possibly see a budge in the other virus that I'm losing so horribly to all over my body. I am SO DISAPPOINTED... no, that is an understatement!
I do understand the caution...-> I ABSOLUTELY need all my organs in best shape as possible for my stem cell transplant(whenever there's a match)... none of the IFs... like we were worrying about with the liver becuz of the up/down levels. But everyday I fight moods & really have about had it w/ this body... more becuz I just want to see improvement.. an increment of improvement...something! AND the study drug had shown that... a tiny light... even if it was barely noticeable to anyone else, I FELT it & not just physically. Now that increment is gone & the monotonous, painful growth of both viruses rage on... nothing stopping them... ... ... I don't know what else to say, to express...
ALL I can do is get up in the morning & pray Gods grace, Gods strength, peace will get me through the day. goes back to simple Phil 4:13...... not my strength- Gods strength, then I can get thru the day.
Also another thing I found out while the few days at NIH was I have another resistant bacteria again! The docs are now looking & I'm waiting on sensitivity results. This should help figure out another med that will be successful in treatment... since obviously the half dozen plus meds I take now just aren't cutting it.
Anywho, to lighten the outlook... Karly is improved every time I go back to NIH :) She is very skinny, but she is off IV meds... This is a new & great freedom... being hooked up to machines all the time downright sucks... If youve never had the experience praise God! Her mood improves with each new milestone she hits & surpasses, I am so proud of her, she has come a long way! I expect great results on her upcoming bone biopsy, i just know it :) She gets another wonderful freedom this weekend as you all know... Mom &Karly are getting off campus(out of the hospital)... & staying the weekend with family in MD! I pray that first & foremost it is a relief, it is fun... but I also pray they find a balance & do not tire Karly out too much. It won't be much longer till the family gets to see each other again... for our spring breaks we will be traveling to MD- Tyler on his, and then everyone else on dad's! We are looking forward to this immensely. As my dad mentioned in his blog... gotta keep pruning the shrub, gotta scrub the lighthouse, uh, gotta clean the fish tank... no that's not it... haha... well we just need to see each other, be the family unit, support each other & that's all there is to it! Thank you all for the vast support web you have surrounded us with; keep up all the prayers! Still pray diligently for the donor match, never stop spreading the word! I love you, my family loves you, and God bless!