Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

Medical Frustration

Friday September 14, 2012
Harrisburg Hospital, Harrisburg Pennsylvania

 

 

These have been among the most frustrating days of this entire 9 month nightmare.

After David was admitted on Tuesday night and his blood counts taken, it was clear that he was much sicker than he wanted to believe.  Since then his counts have steadily fallen as his temperature has jumped back and forth between relatively normal and too high.

 

DGB in hospital again (2)

Carrie and I were with him on Wednesday and we thought things would be fine since we assumed these folks had the situation in hand and  knew what they were doing.  She was a great help to me in many ways including the navigation around an area with which I am very unfamiliar.  I was sorry when she had to return to Baltimore on Thursday evening.

Thursday morning when his numbers had done nothing but drop, it was clear that no one but us was taking this seriously enough.  And by this morning, Friday, when his numbers dropped even further, I was, as my midwestern grandfather used to say, madder than a wet hen.

 

No wonder our health care system is broken.

We have pretty much had to take over constant monitoring of what these medical folks are doing and not doing.  The doctors don’t talk to one another apparently.  Today the Infectious Disease doctor stopped one of the antibiotics and the hematologist on call reinstated it this evening.

As of 4:00 today, only one doctor had been in to see David.  If you are an inpatient, all of your doctors are supposed to do rounds on you EVERY SINGLE DAY to check the status of your condition and their orders.  That means they actually come in to your room and talk to you.

Today his hematologist did not come in to see him once.  BUT that doctor wrote notes for his chart.  About his visit I assume.  Except there was no visit.  I have asked to see the notes.  I am becoming the wicked witch of the west.  So much for mild mannered southern women

Thursday as it began to be clear that no one here knew what they were doing I started writing to David’s doctors at Moffitt who have been extraordinary.  I am in constant contact telling them all his blood numbers and getting their recommendations which we then have to make sure this hospital carries out.  

David has to check every dose of every medication and its timing.  He has to insist that they tell him his blood pressure and temperature when they do his vital signs and not in Celsius but in Fahrenheit which of course they don’t know.  They just write the numbers down.

All the blood cultures have come back negative so there is no way to know what is causing this infection unless it is tick born.  But these tick born diseases can take 3 weeks or more to manifest in the blood.  Thus they are treating this as though that is the problem.  Thus he is on two different antibiotics.  One by IV three times a day and one by mouth twice a day.   In his immunocompromised condition, they are also giving him additional drugs to raise his white and red blood cell counts and his platelets which have dropped by nearly 150 in three days.  This morning his platelet count was .69.  129-366 is normal.  His count was 163 when he was admitted.

So we are stuck at what I consider to be a nearly incompetent facility where they are being paid by our insurance to provide care which is actually being determined by his fine doctors from Moffitt who are being reimbursed nothing.  No wonder our health care system is in trouble.  Doctors can get paid for writing notes on patients they do not see.  They can get paid while their patients get worse and they countermand each others orders.

 

We take the bright spots where we can get them.

~Several of his nurses have been wonderful and quite knowledgeable.  It appears to be the doctors who are unimpressive here.

Sunset and DGB 002

 

~David can manage to smile and make himself look like he feels a great deal better than he does.  Is this a good thing??

~He did get up and put some clothes on today for the first time in 3 days.  I thought that might make him feel better but mostly it just exhausted him.

~I brought him a croissant from Hershey’s and some decent coffee since according to David the food here is the worst he has ever tasted in his life.  Moffitt’s food wasn’t great but seems like gourmet compared to this.   The coffee and pastry perked him up a bit.   But having to be constantly making sure that what is supposed to happen is happening and nothing else is happening is a real strain for him.

 

DGB in hospital again (4)

~He has a lovely view of the Susquehanna River which unfortunately you can’t see from the bed but is what finally lured him to make the effort to get out to sit in the chair from which you can see it.  Too bad about the harsh lights and the reflection spoiling my only picture of the view.  But you get the idea.

 

~As of tonight, his fever has been below the danger zone for 24 hours which is a very good sign.  If his numbers would just go up, he could go home with only the oral antibiotic prescribed for Lyme Disease.  At the very most optimistic this cannot happen before Monday.

 

Here comes the advice from someone who has too much experience in this area:  

1) Be VERY aware of deer ticks.  They are teeny tiny and everywhere at least on the east coast.  Check your hair, check everywhere.

 

2) If you ever have to go into the hospital for anything even remotely serious, DO YOUR RESEARCH.  Make sure you go to the hospital which is either #1 or #2 in the country for that condition.  No matter how far away it is from your home or current location.  There is no substitute for experience.

50 comments:

  1. I meant to e-mail you and ask if they had suggested Hershey Medical Center. They're supposed to be the best in the area for all sorts of things. (Hopefully that's NOT where you are!)

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    1. No Laurie he is not at Hershey since it wasn't the "closest" hospital but I sure wish he was and if anything like this ever happens again I will take my own advice and RESEARCH the BEST hospital within an hour's drive. He is at Harrisburg. DO NOT EVER GO THERE!!!

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  2. Do you have any medivac insurance like MASA or Sky Med? Perhaps they could transport David back to Moffitt.

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  3. I was going to say the same thing...can you get him back to Moffitt post haste? I groaned when I saw your headline pop up :-(. I wish there was anything we could do for you.

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  4. Moffitt may be able to give you a list of small plane pilots who transport seriously ill people as good will. I know Angel Flight is one. This site might help you, Sherry. http://tinyurl.com/9744pmz

    I'm so sorry all this happened, especially when things were going better than expected. I have faith, however, in you and David and that all will be well. Thank goodness he has you as his advocate. Thanks for keeping us up-to-date.

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    1. Judily, Al & Karen, Hobopals. With his fever stabalized for 24 hours, he is no longer dangerously ill. The frustration I was expressing at the end of a long day was how much work it was to monitor hospitals who don't admit they don't know what they are doing. The moffitt docs could tell us what needed to be done, and we could get it done but neither of us should have had to do it. Be very careful what hospital you use.

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  5. Jeeez that's maddening to read, Sherry .. Scary

    Thinking of you ...

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    1. Exactly Caroly, maddening and scary. Thanks so much for your thoughts.

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  6. What a nightmare for you guys!! Don't even know what to say to be supportive and upbeat.. Thinking of you both hope things get so much better for you both!!

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    1. Things have started to look up Luci. Thanks for thinking of us and commenting.

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  7. So sorry to hear of this new medical challenge. David is sure lucky to have you as an advocate. Hope brighter days are swift in coming your way.

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    1. THanks for your comment Big EZ. We know brighter days are coming

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  8. Sure glad to hear you're being proactive. Although antibiotics are a "miracle" drug, now they'll have difficulty figuring out what the problem is. It is Very sad how terrible some medical facilities can be. Sure hope David starts feeling better and can visit a Real doctor. Prayers are with you.

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    1. Proactive is the trick. Gone are the days when one should sit back and listen and accept whatever you are told. But thank goodness for doycycline and neupogen and the Moffitt folks who were with us all the way.

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  9. You are only 1 1/2 hours away from Johns Hopkins and University of MD hospitals in Baltimore - is it possible to get him moved to one of them ?

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    1. Unfortunately a "transfer" is almost impossible unless you can prove incompetence or the hospital transfers for some treatment they are unable to provide.

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  10. Yes, our medical system is broke!!! Just so sorry David got caught in such an unacceptable facility. Thank goodness you have Moffit at your back and you are there to do what you are meant to do...advocate for David or in other words...Be the Wicked Witch of the Virginia when necessary!!! We are keeping you both in our thoughts everyday:o))

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  11. David and Sherry, This news just saddens me. You two have been through so much. I agree, do the research, but when you are under such stress, that might be difficult to do. You are both in my continued prayers.

    Love to you both,

    Leanne (Laurie & George's Mom)

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  12. Could you transfer him on your own? Maybe Moffitt can help?

    I'm so sorry he's having so much trouble. My Mom got Lyme disease. She rarely goes outside so we don't know where she got a tick. I do know a good infectious doctor in Tampa. I wish he was there.

    Maybe talk to the chief of staff?

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    1. Big problem (but not a dangerous one) yesteday about which I haven't yet posted is the 'week end' when no one is there, no one is available. It's amazing how they protect one another.

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  13. Is there a possibility of having him xfered to another hospital? It might be costly to do via ambulance or Medivac, but would be worth it to ensure he's getting the care he needs.

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  14. if only there was some way to move him back to Moffitt..:( so so sad that you are going through this just when things were looking better..praying for success...it sounds like your staying on top of things and making them communicate with Moffitt..good for you!!!!! You have to advocate for yourselves..sad but true...we're thinking of you and praying for you both....

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  15. My heart aches for you....so awful to have to be at their mercy. Lots of ideas on a transport or John Hopkins so close. I hope some answers come in. He's trying to be such the trooper and know you have to be exhausted. They better get their s#)*^ together...I'll sure have you in my prayers!

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  16. It's not just your system (Canadian Dude here)
    We have good and bad hospitals all over the place. I think it flows from the top down somehow. Not sure what else could explain it.
    I still remember that scene in "Steel Magnolias" when Sally Fields has a sh*t fit when they won't give her daughter her pain meds because it hadn't been two hours.
    Now, in contrast to that scenario, when my father-in-law was nearing the end, we were allowed to monitor his pain (you could tell when he started to get uncomfortable) and then simply give him some more morphine. The poor guy was dying, so it wasn't like he'd get "addicted" or some such nonsense.
    However, that was NOT from a hospital that was conveniently close to home. He never ever wanted to set foot in the hospital that was close to home, since he felt that they had failed to look after his wife. (She died in '74)
    I'd chalk it up to laziness on the part of the hospital staff there.
    Incompetence can be found in every "system".
    Best of luck to the both of you.

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    1. Sounds like your FIL learned what we all must and what someone already commented - All hospitals are not the same. But word gets around. The trick is to do research when you are in an unfamiliar area. I guess it's cold comfort to know that in Canada you have the same situations. Very nice to hear your FIL picked a compassionate hospital not one only worried about cover their A&%es with "porotcols".

      Having not been in hospitals during our lives this is a real learning experience for us. Some pleasant, some not so much.

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  17. THanks so much to you all for giving me so many comments to wake up to. It is wonderful hearing your voices and knowing that you are cheering for us and understanding this frustration. Thanks to his Moffitt doctors and somewhat to my ugliness they are doing what they are told to do and he is improving with doycycline and when they finally gave him neupogen 'the wonder drug' for transplant patients his counts rebounded strongly. I'll post about that later today. I want to make sure I compliment the poor nurses at Harrisburg. Aa at many other hospitals, they are wonderful but many of the doctors are, well, a whole lot of other things. Sadly no one listens to the nurses who know what's really going on in every hospital.

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  18. You definitely have to be your own (or your loved one's) patient advocate. Good thing David has you - I would not worry one iota about being the Wicked Witch. :-)

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    1. Definitely not worrying although the head nurse told me I should "calm down" last night when I'd just had it with the doctors. HA! I told her not to worry I wasn't going to have a heart attack she'd have to deal with. :-)

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  19. I, too, am here cheering you both on, but don't know what else I can do for you.

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    1. Of course there is nothing anyone of you can do but it's wonderful seeing your comments and having a forum for the good and the bad. Especially to give you the benefit of our experience. You are my friends after all and boby do I appreciate you.

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  20. Unfortunately, that old maxim "you don't want to be in a hospital when you're sick is really true". Here's hoping that David is able to fight this problem off himself as the medical staff doesn't seem to be very proactive. He's lucky to have you fighting so hard for him. Keep up the fight and I hope things improve in the next few days.

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    1. You are so right Rick. Everyone really needs a badass advocate if they have to go in the hospital these days.

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  21. Whew, how exhausting! You should be drawing a salary for all this work you're having to do. I'm sorry it's been such a bad hospital stay but glad to hear David is on the mend now.

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    1. Yes it has been exhausting. Thank goodness for our doctors at Moffitt! They go above and beyond.

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  22. As broke as our medical system is I would still rather be treated in most (not all) medical facilities here in America rather than elsewhere... Get him well and enjoy the road again...

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    1. After my experiences, I'm not sure I'd agree with most but for sure some. The trick is to know which ones are the good ones. I have several foreign friends who have gotten wonderful care in Canada, Sweden and France. I just wonder why in the 21st century all our hospitals can't be good.

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  23. AUGH! I'm so sorry you have to do these people's jobs for them!! It's not like they're poorly-paid for their "efforts." Doctors. Seriously.

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    1. It's the nurses who do the best and hardest work it seems and are paid the least. Something is wrong here. Where are the doctor police? They police themselves. Right - now there's a great idea. Haven't we seen that have some not so hot effects on the economy??

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  24. Hoping today will be better for you both and you can get David out of that place. I'm sure you really don't want to go back to FL yet but maybe that's where you should be just to be closer to Moffit in case anything else comes up. And you are so right, weekends (and holidays) are a horrible time to be in a hospital.

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  25. So sorry to hear of these hospital difficulties..thanks for the warning about the deer ticks. I don't even know what they look like. Will have to do some research. David is lucky you are there fighting for him. Hope this situation turns around soon!

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  26. Oh my gosh, Sherry! So, so sorry this has become such a nightmare. Can't even imagine the frustration you're going through. We feel totally helpless but know that you guys are in our thoughts and prayers every day.

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  27. Sherry Every hospital has an ombudsman (sp?) program. Their purpose is to assist patients and families with any problems that arise. See if you can get their assistance re the doctors. The pace is slower on the weekends -- but the care should remain good. If you dont want to ask the nurses re the ombudsman ask the volunteer staff or the hospital operator or the social workers.

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    1. Welcome Kristine, thanks for commenting. We did contact the "ombudsman" who is now called the "hospitalist" and this was the person we were having the most trouble with. They seem to have the power to make decisions over those of the doctors who have actually been following your case. More to come when I have the time to post about it. Great suggestion - sadly, it doesn't always work.

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  28. So sorry to hear about your frustrations. I am pleased that the doctors from Moffitt have been helpful to you. Hang in there and our thoughts are with you.

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  29. Sherry -- I know that this is all doubly frustrating because you know what good care is from your experience at Moffitt. We're on pins and needles here, but I see from your comment above that things are improving. Hang in and don't inconvenience that head nurse with a heart attack. ;-). -- Pam

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  30. Hang tough, Sherry! Don't back down and don't give up. David will beat this and go home with you. We're so sorry to see you having to go through all the grief on top of David being so ill. We are keeping close in our thoughts and prayers.

    PS: You are the nicest, badass mad wet hen I've ever met. :c)

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  31. I am so sorry, Sherry, for this setback. Things had been going so well and I was thrilled when you were able to get away from FL. But ticks are an issue almost everywhere. They are usually so small that they can be very hard to see. I have a friend with Lyme Disease and you would not believe how many doctors deny that we have that here in the Midwest. It is very hard to get someone to treat you with the antibiotics you must have. Have you considered "kidnapping" David? There are good and poor hospitals and you don't want to spend time in the bad ones. I once turned down a heart cath procedure telling them that if it had to be done, then I needed to go home where there were "real doctors". I'm sure that made me less than popular. As a result of my experience in that hospital, another guy who had a stroke was life flighted home just as soon as he was stable enough to make the flight. Keep up the nagging, Sherry. You aren't there to win a popularity contest.

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  32. Good summary of the craziness there. Love Paul & Marti Dahl's comment - you ARE the nicest, badass mad wet hen ever :) I think you should share these thoughts with someone...it is so unfortunate that the patients come in last. As you know, I am very thankful for those doctors at Moffitt - count them as one positive in this.

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  33. I'm glad David has you to kick ass and take names! I hate that you guys can't catch a break :-(. Your in my thoughts every day!

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  34. Ugh! Sorry to hear that you have wound up in such a mess of a hospital!! Way to stay on top of things!

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