Hope is a Journey….

Last Place On Earth

Greetings to you all from the last place on earth that I would want to be in….a hospital bed.

At least I made it 4 months between this hospitalization and my last one – which broke the old record of only being able to go 2 months between each hospitalization since Sept of 2010.

Ironically enough, last year, at this exact time, I was also hospitalized (for different reasons).

January 2011

I was really hoping that 2012 would be a better year…

But so far, it has been more of the same.

I’d been having some really odd sensations in my chest (feeling a pressure build and then feeling like I was going to pass out) for a few days as well as my blood pressures and blood sugars were wildly swinging high to low – so I knew that something was coming (usually when my autonomic system goes on the fritz, I can almost be certain a crash of some sort is imminent).

Yesterday (Friday), I was heading to an appointment at Lowell General for an ultrasound to rule out a blood clot in my left arm.  The day started rough and I just knew that I wouldn’t be able to get myself to the appointment alone – my friend Sharla offered to take me to the appointment (and boy am I glad she did!).

The entire time we were waiting for the appointment, I increasingly felt worse and worse, and I was hoping that, once I laid on the stretcher for the ultrasound, I’d feel better.  After about a half hour of waiting, I suddenly just felt this overwhelming nausea, dizziness, and pressure in my chest. I vaguely remember the ultrasound tech asking me if I was okay and then getting a nurse…and the next thing I clearly remember was the ER and the doctor talking to me.

I didn’t pass out, but everything was a blur.

My friend Sharla said that I didn’t look very good and that there was quite a flurry of activity around me.  I just remember the incredible pressure in my chest and feeling like it was being crushed.

It took them about an hour to decide that I needed to be admitted – and then they hemmed and hawed as to whether or not I would stay local or be transferred to MGH.  We decided to try to manage this locally, and if things got worse, we’d transfer.

Poor Ralph was helping a family friend in Quincy, so he was unable to come and be with me until after he got home and got the kids up to bed….and I am SO incredibly thankful to my parents and Keith for taking care of Will and Sasha in a pinch (as always)…and for Sharla for staying with me for the entire day.

As the night went on, I began to feel somewhat better as long as I stayed mostly flat and didn’t move.  If I had long conversations with the nurse or doctor, my oxygen saturation would go down into the 80’s until I stopped talking.

My lab work was essentially normal (minus a very non specific marker for possible blood clots) and my chest x ray was normal.

They also did the ultrasound on my arm and ruled out the mass I have there as NOT being a clot (what it is will have to be determined at some other point).

I finally made it up to a room at about 6 p.m. and got settled with the nursing staff.  They’ve all been wonderful…

But I must admit, I’m a pretty self sufficient patient – they’ve allowed me to draw my own labs (off my PICC line – but they have to ‘supervise’), hook up my own fluids (they’ve allowed me to use my own pump/fluids), and I don’t really ask for much.

I even got an unexpected visit from the Chase and Kurland family, which I really needed – though I probably need a shower more! 😉

Ralph came with a bunch of goodies for me and some clothes to change into and he and I just melted into each other. It was so nice to be able to wrap my arms around him.

My night didn’t go so fantastic – every time I got up to go to the bathroom, the incredible pressure returned and my heart rate would skyrocket…and then the intense nausea set in.  I don’t think my body knew what to do with itself.

My night nurse was fantastic – and I finally settled in to sleep (shrouded in tons of blankets because, apparently – despite the complaints of others saying it was hot – I was intensely cold.

I slept fairly well through the night (waking up a few times – but to be expected in a hospital) and woke this morning to a request for me to give more blood…and then I had to switch fluid bags, the aide came in for vitals, and finally the doctor arrived – I think it would have been impossible to go back to sleep at that point.

The doctor was very kind and seemed to understand Mito pretty well. I thought for sure that he was going to tell me I could go home, but he said that I might be here for a while.  Sigh. Well, at least I’m close to home, right?

Cardiology just came by – I’ll be going down for an echocardiogram and some other monitoring tomorrow and we’re going to increase my fluids. There was some talk about somehow monitoring my pulmonary pressures (but I surely am not allowing them to do a line in my neck to do so – at least not here!) and maybe talk of starting some medication to help mitigate the preload insufficiency that I have…but he isn’t wild about starting it right now with so many things going wrong in my body right now.

He feels that either I am really sensitive to the small pericardial effusion I have OR that the preload issue is exacerbating things – but he also agrees that I am definitely having some sort of “Mito” issue – whether it’s primary or a secondary response to something else going on…that’s to be seen.  Honestly, I don’t think that anyone really knows what is going on for sure, but they are doing their best to understand it and treat it…and they are listening.

I got to spend some time with Ralph and my munchkins – which was really nice.  It’s not easy to have a mommy in the hospital (and it’s not easy to be a mommy in the hospital).  I want them to know that, even when things aren’t at their best, we can still make the best of it.

And I was even more blessed to have Candy, Sarah, Jon, and Colleen, Rob and Linda stop by to cheer me up…unfortunately, I started to run a fever, so now they are wondering if all my issues are stemming from possible sepsis or some other type of infection.  We drew blood cultures and are watching the fever closely.

We are all hoping that this is not the case….fingers crossed. I’m currently sitting at 99.6 with Tylenol and my head is pounding!

And, it probably doesn’t help that my room is on the warm side.  So, between that and the fever, I feel like I am melting.

To be honest, I’m quite frustrated with the fact that my body is not cooperating – but I am not going to let it get me down, I’m going to use it to drive me harder into getting things to a place where I can count on stability.  I’m going to be positive ….

I’ll admit, I am pretty upset because I had planned to visit with friends last night and I had tickets to go see Liz Longley and Air Traffic Controller tonight.  😦

Okay…enough of my babble….we now return to your regularly scheduled programming….

Next post, I hope to be able to not only say that I am out of the hospital, but I have some pretty exciting news that I can hopefully share with you all!!!

Love and Light,

Stefani

Comments on: "Last Place On Earth" (9)

  1. You are always inspiring. Love, Maggie

    • Hi Stefanie, Love your post for the positive message but not happy about you being back in the hospital. Will be watching fb for updates and hopefully word that you’re stable and can go home! “There’s no place like home.” I Love &Blessings 9

  2. Susie Nadrich said:

    Stef, you are truly amazing. As my mito adventure is really just beginning (most symptoms didn’t start becoming problematic until 18 months ago), you are an inspiration to me. I believe that I share your positive attitude. You are such an example to us all. You are so often in my thought and prayers. Stay positive. I hope you feel better soon and can go home to your wonderful family! Love, Susie

  3. Tammy Peddie said:

    Stefani, My thoughts and prayers are with you, and your family, I to hate hospitals, but at times we have to just sit, and rest, and let others take care of us, so we can then take care of them, best wishes, i hope the next time we get an up-date, it will be from your home, with loved ones surrounding you

  4. Stefani, Get well soon!

  5. Carol Miletti said:

    Stef, there is just so much I do not understand in your post. I guess I’m not alone though.
    I’ve read it twice, and still have no idea of what is going on. (Maybe I should be a doctor)???
    I sure hope you get out of this crisis soon, and get things figured out. You are so lucky to have such a supportive family, and so many friends who love you.
    Don’t forget, tomorrow at noon, the zebras are sending up collective prayers for all of our sick zebras.
    Love to you
    Carol
    PS – I can’t wait to hear about the exciting news:)

  6. Melissa b said:

    Lots of hugs stef! I am right there with you on being frustrated with how your body is reacting. I am missing a 2day swim meet for the boy while my mum takes care of me. Wishing you a restful night and that you are improving inthe morning

  7. Michelle Fox said:

    Hang in there Stef! So sorry you are having to deal with all of this… I know it’s frustrating to have your body not cooperate with what your mind and heart need 😦 Please let me know if you need anything. Love you!
    Michelle

  8. Suzanne Burda said:

    Stefani,

    You are truly an amazing person. I wish that I could wave a magic wand and make you feel better. I’ll try to see your darlings this week. I had to start another round of antibiotics to get rid of the sinus infection Ithat I had at Christmas. I had to cancel all my students last week. .Just started to feel better today.
    Hope you get well soon!!!!
    Love and prayers,
    Sue

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