UGH!

I went into the hospital July 23rd – pretty sick. I got home on the afternoon of July 30th – weak, feeling better, and very happy to be home. (To see the whole sordid tale – read here.)

I was discharged with an order for 4 to 6 weeks of IV antibiotic infusions at home. My daily schedule is something like this:

9:00 am – 500 mg Flagyl (oral)

9:30 am – take my IV meds out of the fridge

1:00 pm – First infusion (Ceftriaxone)

5:00 pm – Second infusion (Caspofungin)

9:00 pm – 500 mg Flagyl (oral)

In between I deal with nausea – thankfully, no more vomiting since the Zofran came home! J

I have little or no appetite – cause, well, when you’re barfy you don’t really care, you know?

I work SO HARD every day to get all of my fluids in. Some days I do great. On barfier days, not so great.

I’m getting some of my supplements in. Others I’m not really supposed to have while I’m on all of the antibiotics. But I got tanked up while I was in the hospital with iron, magnesium, and potassium infusions, so that helped a lot. They are watching my labs closely – apparently this antibiotic therapy can really tank you out – so I’m glad they get why it’s so important.

A couple of days ago I felt like, “You know. I think I’m getting better.”

Today – not so much.

I hate that.

Over the past four or so days my left shoulder pain has become much more pronounced. Last night it was nearly unbearable. I do still have some abdominal tenderness over the abscess site – and yes, that can refer to the shoulder – and did – BIG TIME – before. But this time, the shoulder pain is different. I gotta wonder if it’s the PICC line.

I’ve mentioned the pain to the nurses – they’re awesome, by the way. My friend from church – Karen – is actually the coordinator – I was so blown away when I found that out! How cool is that?! She’s been so kind and patient with me – the big time PICC line wimp. They have schooled me in what I’m supposed to do with what symptoms and so I’m watching, paying attention, etc.

Tomorrow I see the fab Dr. Zelko for my 2 week follow-up. We’ll see what he says.

The big baby in me is worried he’ll want to re-hospitalize me. I so do NOT want to go there!

I’m almost sure he’ll send me for a repeat CT scan. (Oh please, Lord, let him order the one that doesn’t make me have to drink the stuff that’s sure to make me hurl all over the floor. It’s making me want to hurl right now just thinking about it! YUCK!)

Depending on the CT results, I may have to go for another visit to interventional radiology – the part where they take the BIG needle, poke it through my side, and pull some of the abscess that’s there out, so that they can culture it again. That’s not that awful because you sleep through it for the most part. But – well, okay – it’s kinda freaky.

I’m feeling like a big whiny baby right now.

I’m just so ready to be well – and I want it to be QUICK and DEFINITIVE.

Dang, I’m sounding a lot like a toddler, huh?!

Guess I better go find another Jolly Rancher to fight the disgusting taste in my mouth and do some dishes. Life does not slow down when you feel like crap.

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2 Comments Add yours

  1. Melissa Chamberlin says:

    Ok, so this all sounds so familiar and it takes me to places I would have rather forgotten, but you have one thing that I never did…until the end, and that is a doctor that listened to me and believed in me. ME…MY BODY, and by the way, do you mind gloving up before you touch me? LOL at MAYO!!!!!

    Wow, what a ride, huh? That shoulder pain was worse than any other post op pain I have ever experienced. I did the pain meds, and that was stupid cuz it took away (rather eased) the pain and not the abcess, and I had big bad buggies to get rid of once my stubborn self went to the ER, which, by the way was four hours down that road, not five minutes. No local ERs for me, I live in podunkville where the doctors that practice here come from that pool who graduated in the lower 50% of their class.

    Dina, Dina, Dina…I don’t know what to say, but sorry you are going through this aweful experience, however, I am thankful that you gave into the PICC line (I had no choice, they were resorting to IVs in my feet…ouch.) I loved my PICC lines, and after my first one, which was during my initial US hosptial visit, right after Spain, when I knew I would be in the hospital for an extended period of time, I immediately requested one, prior to even the first IV poke. The nursing care at Mayo rocks, and they got to know me well, and even threw some parties for me to welcome me back when I got there. It was a pleasure to be taken care of so well…at least by the nursing team.

    I went through six endoscopy proceedures. I think they would have thrown a matress down my gut to plug the leak if I let them. They used me as a guinee pig for sure, and nothing helped. Sheesh, even I knew that I had a leak for almost two years, and lets just face it, scar tissue does not adhere to scar tissue, it adheres to healthy tissue. My leak was scarred open. I had the same drain tube, that went through my rib cage (ouch) for over six months, yet they did not understand why I had so much pain.???????
    I am rambling as I revisit my frustrations with healthcare. I am so happy that you have a great team. There is a great end to the story, the one surgeon that I had at the end was INCREDIBLE. His name was Dr Sarr, and I have sent many a folk to him for CG when they, too, hit the end of the provervial rope. I am not suggesting that you go to him, but keep him in mind for a resource for your docs, as he had done CG on DS patients with great success. Not only that, he is one of the few docs in the world who actually sits on your bed and gives you eye contact when you speak. I give credit to him that I have my life back again. I should have listened to Dr B from the beginning and just had the tummy taken out. If/When Dr B suggests that to you, listen.
    I love you, my DS sister. I have only seen you face to face on one occasion, errrr many occassions over a week long period, and now that you are going through this, I feel like we are truly sisters now. Call me whenever, and I mean whenever. Up in the middle of the night with fear, call…up in the middle of the night bored, call…having to get another PICC line, call. I will sit there with you and get you through this if you need me. Now you probably understand why I rarely posted on the DS site. Nobody got what I was going through. It wasn’t until I met a lady who was a Dr. Sarr patient and actually had to have her colon removed as well, that I truly felt like someone “got” me. If I weren’t blessed with such a great husband, I would be dead right now, cuz I was that close to giving in.
    Just a side note…you made me chuckle when you explained your shoulder pain away to long surgery and having it extended and pinched. That is EXACTLY what I was thinking so I was seeing my chiropractor daily. Then I went to Chicago for a funeral with that pain, drove…and it just simply got unbearable, and I could not take pain meds cuz I was behind the wheel, and it was then that I gave in and had Craig take me to Mayo once I drove back home. I remember that trip like it happened yesterday. That is some strange and horrible pain. Nothing takes it away, even narcotics…just dulls it a little.
    God Bless you Dina, and keep posting what is going on. Love Melissa

    1. dinamcb says:

      Mel, when I think of you here are the impressions that come to mind:

      powerful
      humble
      penitent
      wise
      guarded over
      a blessing

      You’ve been through so much girlfriend. I am in awe over the way God has preserved your very life – and you’ve come through the other side very much like a jewel shining in the Son.

      Oh my, how you bless and encourage my heart.

      Thank you for being you.

      Thank you for making yourself open and available.

      I love you, my friend!

      dina

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