My Illness: Home again, but wishing I were still in the hospital.

This post is the fifth 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.

When we got home, my husband and the boys moved our king sized bed down to the living room so that I wouldn’t have to do stairs.  My mom was still in town for several weeks to help with my care, so she was assigned to be my bunkmate.  My sister and niece were still in town for a couple of days, so they slept in my room on the floor with a mattress.  My husband slept on my office floor.

The home health services that I was aware of, came to your house daily.  Who the heck knew that home health was just to teach us – one time – how to do the antifungal IVs ourselves???  Since my mom was staying in town for a few more weeks, until I was back on my feet, she volunteered to help me with the IVs.  The nurse was trying patiently to teach us, telling us that we’d get it (understand it).  My mom took tons of notes and I even photographed each step with my cell phone.  Now, my mom was 71 years old and normally a nervous wreck.  Ain’t no way either of us were comfortable with the one training lesson that she gave that first evening.  She arranged to come back the next morning.  After that, we were on our own for twice a day IV’s.  This was part of the reason I wouldn’t have minded remaining in the hospital.  It sucked having to do everything ourselves.

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The first thing the nurse had told us to do was to make sure that we were sterile and that we had our hands thoroughly washed, and then to absolutely make sure that we did not touch anything but the IV stuff.  I was a freak about that!  If I noticed that my mom touched her sweater sleeve or her watch, I asked her to go back into the bathroom to clean her hands.  She thought I was being a little anal.  We’d wash our hands in the bathroom together to make sure that neither of us turned the faucet off with our hands.  Below are actual images of the notes that my mom made for the different steps that needed to be taken to prep the IV – I will never forget the smell of a saline flush!

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When my sister and niece left, my husband went back to our room and slept on the floor with the mattress.  Our four huge dogs were also expected to sleep with him so that they didn’t wake me up – as if that wouldn’t happen anyway – I had a horrible time sleeping.  I got up several times at night to go to the bathroom, and I’d quietly gather up my oxygen tubing, which stretched all the way to the bathroom, so that I would hopefully not wake up my mom.  The tubing actually gave me free range to walk the whole first floor of the house.

This is also where more of the rare side effects happen.  The less than 2% side effects.  I was such a lucky girl!  I was sweating profusely at night, to the point that my pillow was soaked.  I also had daily fevers as high as 102.5.  If I had a fever over 100.7 I was supposed to call my doctor.  I did.  He wasn’t concerned in the least. He said that I needed to be on this medicine – that there really wasn’t another one out there that could help me.  Nausea and fatigue also crept in. Friends on Facebook suggested that I take ginger for the nausea.  I had to check with the pharmacist to make sure that it wouldn’t interact with the IV meds.  Almost all meds interacted with it so I needed to get off some of my normal meds – including my cholesterol med.  I was constantly calling the pharmacist for the first few weeks to ask if there’d be a drug interaction with something that I needed to take.  I also had to get on heartburn meds because I was getting terrible heartburn.

One of my doctors told me that I needed to walk as much as possible.  I didn’t have the energy to walk as much as I was supposed to, let alone socialize with my mom.  She’d ask me if I wanted to play games, take a walk – basically she was bored out of her mind.  She kept cleaning the house, reading her newspapers and magazines.  A few months later a nurse I used to work with told me that the side effects to antifungals were similar to the side effects of chemo.  I was floored.  I confirmed it with my doctor.  He said more so the IV form, but yes.  That totally explained why I was feeling so lousy above and beyond what I should have been feeling.

This part is rated T for TMI (too much information)  🙂 – A couple days after being home, I was extremely bloated from the pain meds.  Taking softeners and Miralax twice daily weren’t cutting it.  I looked like I was 9 months pregnant!  We went on a field trip to my primary doctor and I had an abdominal x-ray.  I was so so….full.  He told me to change the Miralax to 3x/daily and to push myself to walk.  My uncle in Illinois called to give me a little support.  That’s what I really wanted to hear – my uncle telling me to strip from the waste down, spread my legs as far as you can while sitting…you get the picture!  Although I did not follow his advice, a few days later I was getting better in that department.

A week later I had appointments with my Pulmonologist and Infectious Disease doctors.  The Pulmonologist took me off the oxygen during the day and told me to just use it at night for a week or so.  He also had me start to wean off the pain meds – oxycontin and oxycodone.  The hospitalist who discharged me with all that should never have said that I needed to be on all those extra meds for two weeks across the board (I personally do not like the idea of hospitalists, and not your primary, over seeing their patients while in the hospital.).  He also told me that I could wean off the heart medicine – the one that lowered my heart rate.  He said I was getting stable.  We decided that I would hold onto the wheelchair for a couple more weeks just in case.  When I got to the infectious disease appointment, he was telling me how I’d need to be on the IV for a few more weeks at least.  The look of horror on mine and my mom’s faces!!!  Then he tells us that there is a pill form, but that he doesn’t really share the info with patients because it’s so expensive – $1,600/week.  I told him to check into it, just for fun.  We were told to wait for about a half hour while they checked.  A nice man who worked in the inpatient pharmacy came in to talk to us about it.  He researched it while we waited and found out that it would only cost us $10 with our insurance.  Woo hoo!  Rip that PICC line out!  To see the look of delight on my moms face!!  She was thrilled to death that she no longer would need to help me with my IV.  Even though she plans on moving here in the near future, she was excited to go back home to FL.    After all, she had been here for three weeks so far – cleaning, cooking, trying to get me to walk and play games.  Who could blame her? I was no fun!  (This is where I would insert the picture and video of the PICC line removal – but they were lost.)  My infectious disease doc also told me that I could return to working in my per diem role on July 1st.

I placed a call to my senior ambassadors and let them know that I would be good to go in July and that I would be contacting them to set-up sessions.  I also touched base with our landlady and she said that they were going to put off finding a buyer until I got better.  Praise the Lord!  Now our only concern was that we would be able to find another house to rent before they found a buyer.  It’s not easy when you’ve got a few large dogs.  Still haven’t heard from National Jewish.

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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