My Illness: National Jewish Health – Finally!

This post is the seventh in a series on my Necrotising Aspergillus Pneumonia illness.  Where have I been?  On a journey, to say the very least.  If you’d like to start from the beginning, start here.  This post is for the month of July 2014.

July 7th I started back in my per diem role in registration.  I walked slowly so that I wouldn’t push myself or get out of breath.  I had four shifts that month, and they were only 4 hour shifts.  Around that time I also called my ambassadors and finally set their senior sessions for a couple of weeks down the road.

July 8th my husband and I headed out to tackle the morning traffic to Denver and my first appointment at National Jewish Health.  So the results:  I still have aspergillus in my lungs and he can still hear it  in my lungs – but barely. My oxygen level and my spirometry testing was great. We spoke for over an hour and he (the pulmonologist) reviewed my chest CT scan results.  He plans on looking over my medical records in the next day or so and will call me as to our game plan. He also wants to look at the slides from my surgery to try to figure out exactly which type of aspergillus that I have. He will probably order testing, and for sure have me see some other specialist when I go back in about 2 weeks. I still need to stay on my medicine. Bottom line is that I am still recovering. He wants me to slow my walking down and walk for longer periods of time (40 minutes), instead of the two 20 minute walks a day that I’d been doing.  I’m still very short of breath even after a shower. My husband and I really, really liked him.

Below are some excerpts from my Facebook page between 7/13/14 – 7/29/14:

“July 13th Man, I just had a 5 hour energy and now I wanna take a phenergan to get rid of my nausea and help me sleep. One will probably wipe the other one out. I had stopped taking the ginger because I was feeling much better in that department. I think that I’m just nauseous because of the exhaustion. I’m not sure, but I think this moving is killing me. I am so nauseous and tired and trying not to do a lot. I really am leaving the heavy/hard stuff to the guys. I just want to cry (actually I am). Our internal clocks woke us up at 6:30 this morning and I just sat up and told my husband that we could go clean the old house, for the walkthrough tomorrow, later in the day. We laid back down for 4 hours. I’m not even helping clean the old house. My husband and youngest son are doing it. I feel guilty as hell, but yes I know that it’s the right thing to do.  I ♡ my husband so much. He has been taking more than one for the team these past few days with the move. He’s now at the old place all by himself cleaning. He works so hard for his family and it’s been even harder with me recovering.

July 22nd Medical Update: I had gone to NJH on the 8th. The doctor was amazing – EXCEPT – he said that he wanted to see me back in no more than 2 weeks (which is today), that he or his nurse would call me when he went over my surgical slides and my MR’s to talk over our plan of action and maybe add more meds. I never got a call so I called him last Wed. He was out of the office until yesterday. I gave him a chance to get caught up with his calls and I still hadn’t heard from him by this afternoon, so I left another message. He’ll want me to have some testing out here before I go back, and when I see him next time, he wants me to see their immunologist and infectious disease doctors.

Like I said, I had started back to work – short shifts (4 hrs) in my per diem role at our local hospital. Four to be exact. One was the day after we moved and I was so nauseous and tired that I left after 2 hrs. I went to a last min appt with my local Pulmonologist who ended up saying that I can’t work until 7/31/14 and then only short shifts until I see NJH docs. What threw me off was that I was thinking 7/31 was this week and that I’d only need a week of rest. Guess I was wrong. For some reason I seem to be more SOB (short of breath) than a few weeks ago, but my spirometry and vitals are good. The Pulmonologist told me not to take on any photography work for a while.

It really sucked having to call my senior ambassadors, the ones that I had to cancel their sessions when I went into the hospital.  I had to tell them that I had absolutely no idea when I’d get better and that I thought it best they find another photographer. Never, ever had to do that in my life before. I have 2 consultations at the beginning of Aug for sessions in the Fall. I’m honestly thinking I won’t be able to do them either. There goes my business for 2014. I will have to start all over in 2015 to find new ambassadors.

Infectious Disease doc here at home said that I’d be on the meds for months to come. I just wish I would have had a heads up that recovery would take so long. It took me by surprise, to say the least. What also took me by surprise was him telling me that I could return to work 7/1/14 with no problem.  That obviously wasn’t the case, but that’s why I thought my life would be back to normal by now.

July 24th Just got a personal call from the NJH doc. Spoke for about 1/2 hr. He says that out of the 4 or 5 aspergillus’, mine was the worst – Necrotising Aspergillus Pneumonia. He confirmed it by going over my surgical slides with their pathologist. He said my docs that took care of me here did a commendable job. He used words like “puzzling development” and “unusual” because I’m normally healthy. I will be on meds for 6 months at the minimum. He said that some patients are on them for years if needed. He says my lungs are damaged now.  He wants me to play the little old lady when walking (his words). They should call me within a week to schedule another appt with him, one with their immunologists, one with their infectious disease doc, and to get an ECHO to see if a valve is leaking. In the meantime, I will have more lab work done…And scheduling just called and they can’t get me in until 9/10/14 for everything to be on the same day. They added a Sinus CT and an oxygen titration test…I just changed all the tests to 2 wks from now so if anything was wrong, the docs could pick up on it sooner.  The doc appts need to stay the same in order to see them all the same day.

July 29th Just to keep you all posted, add neuropathy to my list of “less than 2% have these side effects”. They think that the symptoms only show up after you’ve been on the meds that I’m on for an extended period. For the past two weeks my feet and just above my ankles have had a numb/tingly sensation. Went to my doctor yesterday and he was thinking that’s all it really could be (neuropathy side affect) but still ran some blood work. Ran basically for vitamin levels. I had been tested for this last year, and D was very low so they had put me on Vitamin D pills. It appears to still be just a tad low and the doctor wants me to double up. Guess what the side effects could be from doubling up? Neuropathy! Hey, I don’t have blood clots or MS, so that’s all that matters to me!”

Although my doctor is fairly sure that I have neuropathy, I ask him to set up testing to be sure.

The journey isn’t over!  This entire series, which is still an ongoing issue, consists of separate posts in order to divide them into bite size reads for you.  You can read the next post here.


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