Thursday, December 22, 2011

It's not how sick you are...it's who you know....

I have been trying to get an appointment with an infectious disease specialist since December 14th.  I even got my nurse case manager on it, to no avail.  Nobody was going to be able to see me until mid-January.

I happen to have an acquaintance who is a physician, as is her husband.  It's the kind of relationship brought about by kids - our children are friends, so we see each other at birthday parties, volunteering at school, field trips, etc.  We are very friendly but not good friends; she's been very busy working, as have I, and except for our children (who are now both A+ students in a rigorous IB program), we are in different social circles.

Another friend who knows both of us told me I should tap her as a resource to get seen quicker.

Now, normally I'm not shy, and would do that.  I've done it with different people in other capacities.  But, she is going through something worse than I'm going through - her son - my son's friend since 3rd grade - has a serious disease and spends a lot of time in the hospital.  So, of course I know she has other things on her mind, and no way am I going to bother her.

Yesterday though, she called me.  She'd heard about my situation and wanted to help.   30 minutes after the phone call, I had an appointment with a specialist - for this morning.

I just got home.

I'm not bitter, this is the world we live in.  It isn't what you know/how sick you are.  Who you know is the most important thing in any endeavor.

Anyway, the doctor said several interesting things.  First, in his 20 years of practice, he had never seen a case of c-diff as bad as mine where the person didn't end up losing their colon or their life (or both).  He looked at me in amazement.  I was the worst he'd ever seen.

He said my gallbladder was the size of a melon on the hospital scans.  (I don't know what that means).

He also is concerned that I am still not well and thinks I possibly have a bowel perforation and/or abscess.

So, it's not over yet.

They are arranging for another abdominal CT scan, STAT.

STAT, I'm sure, means sometime after the holidays when folks get around to it.

He apologized for my having to have more radiation.  It was my turn to look at him in amazement.  I said, "Oh, don't worry, the cancer will get me long before radiation does."

I asked him what would be the "cure" for a perforation or abscess and he said they would put tubes in to drain it, and it didn't necessarily mean surgery, which eased my mind a bit.  I've been living in fear of shitting into a bag for over a month now, and I apologize to any of you readers who have stomas.  I just don't think I could do it.

Of course, that isn't true, is it?  The human capacity for putting up with what we thought we couldn't knows no end.  I imagine if I had to have a stoma, I would handle it as I did everything else - probably with a lot of  poop jokes.

He also said c-diff comes back in 7 days, "like clockwork."  He wants me to finish my vancomycin, (last one today) and then, just ..... wait.

7 days from now is the 29th.  He said, "that'll get you through the holidays."

That frightens me beyond measure.  I know for a fact I won't survive another bout of c-diff like I had before.  And, the doctor seemed pretty amazed I survived it the first time.  Unfortunately, I can't live on antibiotics forever so I have to stop.

But, I have refills and I'm refilling them.  At the slightest change - a loose BM, a new pain, a funny feeling,  I'm starting up again.   The fear of c-diff is a lot stronger than any doctor's opinion, and there is still no certainty that I am over it.  If my bowel is, indeed, perforated, than it seems like stopping the antibiotics would be a bad idea.  But, I don't have an MD so I will trust what he says.

For now.

19 comments:

  1. I cannot fathom your lack of medical access. I have gotten through cancer-land without ever having to wait for a specialist and I don't have any special pull. When I had a MRSA infection, I saw an infectious disease specialist the next day. My doctor made a call at 6 p.m. in the evening and I was seen the next day (and then just about every day thereafter for much longer than I care to remember.) I had a gall bladder issue (chemo is really hard on one's gall bladder) and I had an ultrasound and MRI within an hour. You should not be left to fend for yourself, holiday or no holiday. What is wrong with the medical system in your neck of the woods?
    Incidentally, my parents used to live in Roseville and I went to UC Davis so I do know your location. When my elderly parents were sick, they could just not get a doctor's appointment for much longer than it seemed reasonable to me. I don't get it. I hope you get more of some well-deserved medical attention. It seems like the medical philosophy there involves DIY treatment or just plain old good luck.

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  2. Ann I am so sorry you are having to go thru all of this. It is amazing what you can deal with and put up with, Im sure nothing that you ever thought you would. Sending good thoughts and love your way.

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  3. I agree who you know is really important in getting through the medical system (unfortunate as that may be). Even in a small New Zealand city I have found that it is important to work out who plays what role in the "cancer care" system and develop a relationship with those people so that they know who you are as a person, not just as a number on a medical file. As a result I have found that when I have a medical issue I know who to contact and can get almost immediate attention.

    Reading your blogs I think you have done an amazing job of managing your condition, I think that is all any of us can do in this situation.

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  4. Hello Ann -
    Had not seen you on the HER2 board, so decided to look in and see how you were coming along. What a shock to read your last few posts! Goodness knows you had been through a tough month after the liver surgery, and now this superbug.

    I became aware of C. diff. when my dad was in the hospital after heart surgery. He did not get that, but did get MRSA. What I learned about c.diff. was that the only way to kill it is with BLEACH.

    I was always using the antibacterial wipes all over dad's bed, counters, doorknobs and other parts of his room. A nurse told me that that was good, but there was another really bad bug that freely drifts around hospitals because they don't use was much bleach as before.

    I hope STAT means very quickly and not after Christmas weekend! The sooner you know what you are dealing with the better to treat it properly instead of guessing.

    All the best for more ass-kicking energy coming your way!

    StephN

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  5. I would say I've gotten decent medical care when it comes to cancer. But, I have to agree that in this case, it's been atrocious.

    I have an HMO which slows things down some - you have to have pre-approval before anything happens. But, I had my pre-approval to see the infectious disease specialist and nobody would get me an appointment. I think the office staff has a lot to do with it. I sat there today all alone in the waiting room, and watched five women employees do nothing but talk about trivialities. These are the folks who never called me or my nurse case manager back. They had plenty of time to discuss their Christmas plans, but didn't return a phone call - even to make my January appointment.

    Normally, I'm a lot more assertive and I make annoying bitchy phone calls and advocate for myself. You'd be very surprised at how illness makes it hard to do. I couldn't breathe, so talking in the proper tone was hard. Waiting on hold was hard physically even. It got so I was just thinking, "whatever." If it gets bad - if I get a fever or start to vomit - I'll go back to ER which will cost thousands - it would be a lot less for a doctor to see me in his office.

    I do think medical care differs around the country, but it can also differ from instance to instance within your own insurance. Don't forget that I was offered a ground-breaking liver resection, which most women aren't even told exists, and which most surgeons won't do - so it's not all bad.

    But I agree, I should have seen a specialist within a day of approval with my health.

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  6. Thank goodness you were seen and it sounds like by a good Dr. Glad your acquaintance was able to pull the strings needed. Hold on for 7 days from now and get those refills ready - Keep that darn Cdiff at bay.

    Prayers for a good, restful, pain-free, happy, laugh-filled, Christmas with your family.

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  7. You are one tough lady! So sorry you are going through all this, especially at the holidays. Just FYI, a recent review suggests fidaxomicin is a bit better than vancomycin at preventing recurrence (http://www.annals.org/content/155/12/839.abstract). Hang in there!

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  8. Wow! I'm glad to hear you finally got to see a specialist. If I were you, I would use the holidays to your advantage. There are lots of times when hospitals are open for tests but people as a rule don't want to come in because they want to spend time with their families. I had an MRI on Easter Sunday - at 4pm so it didn't really interfere with anything. Can you call the CT scan scheduling people and tell them that you are happy to have the damn thing as soon as possible - like Christmas Eve or the day after Christmas would be fine - just so you don't have to wait? I mean if people are in accidents on weekends and the middle of the nights hospitals often manage to get them the appropriate test at weird times. They just assume that most patients don't want appointments at weird times. Good luck and Merry Christmas, Happy New Year, Enjoy Kwanzaa and Happy Hannukah! Big hugs!

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  9. Praying that you will have the strength to get you thru and do what you need to do, Ann.

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  10. Ann, thank goodness you got to see the doctor today. Given what you've been going through, it's frightening that you were not seen any sooner. I too know that this is how the world works - it's who you know, not how sick you are - but the waiting that you've been put through is beyond ridiculous.

    Sending love, hugs and best wishes. And let's hope that your c-diff finally realizes that you are simply not going to give in, and decides to not come back again on the 29th, or anytime ever again.

    Beesie.

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  11. Thankfully you got to see the Doc today. I'm really proud of your A+ IB kid. Wow. That's a great program. Hope your Christmas is happy. Thinking and praying for you always.

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  12. Good heavens, what you have been through! I am sorry and can only imagine the frustration this has caused (to put it lightly). Whatever you do, Ann, fight against that "whatever" mentality. I've been sick enough and remember feeling that death was not far off...that I didn't really care...that I wasn't going to improve. I truly could not remember what normal felt like. Now that I am back to "normal", I can see how my mental state became somewhat dangerous. You need an advocate. Someone who can be there to make calls, light fires under idiot people, threaten lawsuits, whatever it takes. Can you have a pow wow with some close friends and ask them to help you kick ass...at least until you're ready to solo again? Just a thought, but I just think you need some cheerleaders...people who can hold you up and fight for and with you. I would if I could! What I CAN do is pray, so that is what I am doing. Patti

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  13. Ann, it seems silly to say hang in there when you seem to always having to be the one that has to hang in there. I remember when Sid had his issues going on he was told to drink Rose Hip tee at least 3 time a day. It helps purify the blood. I am not one who believes in all that stuff but it was amazing how quickly things changed for him. So with that I will say "Hang in there" you are one stong person.
    Judi - Reno

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  14. Anne I'm really happy that you got to see the doc but not happy to hear that it, the c-diff comes back in 7 days! Supposedly STAT means immediately but this time of year, who knows. I'm praying that you get through all of this and regain your strength.
    Love n hugs. Chrissy

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  15. Glad you got in to see that doctor, Ann. Hopefully you can get those scans done in a timely manner, too.

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  16. So glad you got to see that doctor. My goodness you have been through so much. You are a very strong and corageous lady. I was diagnosed with breast cancer in April, you have inspired me so much. I wish you and your family all the very best. Lots of love Kathy from Somerset West, Cape Town, South Africa

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  17. Hi, Ann
    I follow you're blog almost every day.....I commented once, apologizing for your negative nurse experience. Being a retired RN, I felt badly. What has happened to you lately is just shudder producing. I am so glad you are an informed patient, that you question everything and let your concerns be known. I am hoping for a complete and total recovery for you. Ann, I know you have a terrific support system, but you are welcome to pick my brain anytime you wish. As a BC survivor myself, I have done loads of research and would happily share any and all if it with you if it would help. You can email me, or friend me on Facebook.
    Take care and I wish you and your family the merriest Christmas you can have after such an awful experience. Sincerely, Elaine Fazio-Mercado, efmrn4@aol.com

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  18. I am so sorry to hear of your continued travails. How kind of your friend to think about helping you despite being busy with the medical issues with her son - what a wonderful person - and I'm glad you are being seen by an expert in infectious disease. Sending healing thoughts your way!

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  19. Hi Ann,

    All I could think of as I read this post was that, "you are one tough cookie!"

    I hope that today will be one of joy and peace for you and your family. Merry Christmas!

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