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

Henry David Thoreau

Wonder drug to the rescue

Sunday September 16, 2012
Gifford Pinchot State Park, Lewisberry, Pennsylvania

 

Thursday:

On Thursday night at 8pm his temperature goes up to 100.6.  They start the doxycycline and a few hours later his temperature returns to normal and remains there.  So glad we have been very careful not to over do antibiotics.  Now when he really needs them, they work!

 

Friday:

David’s white blood counts and absolute neutrophils have now gotten low enough that he is neutropenic.

His white blood cell count on Friday has dropped  to 1.7 and his neutrophils to .69.  He is on doxycycline for the infection but I am emailing his counts to Moffitt and that night his doctor at Moffitt talks with the hematologist here and neupogen is added.  

FINALLY the order is given for an injection of neupogen, the transplant wonder drug, which is administered at about 10pm.  This is the same drug he was given after the chemotherapy during stem cell transplant.  It is a man-made form of a protein that stimulates the growth of white blood cells in the body. It used to treat neutropenia, a lack of certain white blood cells caused by cancer, bone marrow transplant, or receiving chemotherapy.

With this I know he will turn a corner.   And he does.

 

Saturday:

By Saturday morning his White cell count is up to 6.7. (3.9 to 9.5 is normal).  The conditions for discharge as explained by the Infectious Disease doctor are normal White cell count and absence of fevers for 24-48 hours.  By Saturday mid day, these have been met and by later in the day both the hematologist and the infectious disease doctors say he can be discharged.   There seems to be no reason to think he can’t go home.

HA!  Not so fast.  It’s Saturday, that’s a week-end, things are even more disorganized on week-ends.  That seems hardly possible but it is true. 

 

 

Now there is a “hospitalist”. 

This is, as far as I can tell, a sort of made up job.  A hospitalist is a board certified doctor who doesn’t practice medicine but rather coordinates on behalf (supposedly) of an inpatient.  I won’t go into all the details which occur over an 11 hour period but suffice it to say that I am there until 9pm trying to get to the bottom of where is the hospitalist since that person is the only doctor who can discharge you and they only do so if all your other doctors agree.

  David’s doctors have told him that they do, but at 9pm last night after 11 hours of trying to find out what is going on, the hospitalist, who has seen David a total of once at 7:30 am earlier that day, decides to refuse to discharge him.  In spite of the fact that he meets all the criteria and the doctors who have all followed him (such as it was) for 4 days had agreed to discharge, this woman says no.  

Fear of fever flaring up is the excuse given.  And that’s just what it is, an excuse.  He’s been fever free for OVER 48 hours.  So I drive back without him.

 

 

I sure wish they’d let me testify about the problems causing rising health care costs. 

In the mean time, on Saturday while waiting to be discharged, they give him a second shot of neupogen obviously without first checking to see that at 6.7 his white counts are already normal.  Today, because of the second neupogen shot, they are at 20.5 which is twice the normal high.

But, I speculate that the hospitalist had forgotten about David later on Saturday, gone home for the evening and did not want to bother taking care of it until the next day.   This is what your insurance is paying for.  Unnecessary drugs (in this case at $300 a shot), and unnecessary over nights with all those accompanying costs.  Do we wonder why the system is going bankrupt??

 

 

Alls well that ends well?  At least for now.

The bottom line is that he is out of the Hospital of Horrors, feels very good due to his high white blood cell counts and has pizza for dinner.

 

Last day in Hospital 059

 

 

 

We have found out first hand that nothing compares with Moffitt. 

They are simply amazing. I am bowled over by how quickly they responded to multiple daily emails I sent them and how they directed David’s care through out this ordeal.  Can you email your doctors and have them write right back??

David is safe and home due to their diligence and expertise.  We can recommend them without any reservation as having the very finest in care for cancer patients no matter where or when they may roam.  We feel we are part of the Moffitt family and we can call on them any time.  There is a lot of security in knowing that.  Choosing them was the smartest decision we’ve made in the past year.

 

 

The take home messages from our saga:

BEWARE the community hospital if you possibly can  for whatever your problem.
 
All doctors are not educated equally and some are “practicing” at your expense much more than others.

The Moffitt Cancer Center is what medicine in this country should be for everyone.

42 comments:

  1. Glad David is home.

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  2. Glad it turned out so well for David. Did they have any idea what caused the problem? It is so ironic that there are people who need to be in a hospital but can't be admitted because of insurance practices that only allow out-patient surgery for certain operations, for example. Yet David has to remain because the "hospitalist"??? went home and didn't bother to release him.

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    1. It was the ticks Gypsy because of his compromised immune system. We don't know for sure if he has Lymes Disease but he's being treated for it as a precaution.

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  3. Sure glad David made it out of the Hospital of Horrors. He sure looked happy with that pizza!!

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    1. Thanks Rick. He was definitely happy on both accounts!

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  4. pizza has a way to calm the soul...

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    1. I think you are right......as others have said, comfort food.

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  5. So glad David is home, Sherry. "Hospitalist" is fairly new to the scene. I think I first heard the title a couple of years ago. I think he/she replaces a regular doctor making rounds in the morning (in some hospitals). I stopped writing and looked it up in case anyone is interested: http://nextstepincare.org/uploads/File/Guides/Hospitalist/hospitalist.pdf

    Do they know, yet, what caused David's infection, Sherry?

    I've been and still am putting off the inevitable for a long time because I'm not a fan of the medical profession. I had an experience after surgery many years ago, and I don't think except for Rich's intervention, I would have left the hospital alive. Needless to say, my reluctance is not making my kids happy.

    I am so happy that you found Moffitt. Is there a similar center that is in the area (that I hope you never need) that you can familiarize yourself with? Maybe have a consult with a specialist in lymphoma who practices at the hospital?

    I know you had to be extremely frustrated being at the mercy of incompetent medical staff. I've seen my supplemental insurance SOAR since the talk about the new healthcare plan first started. My daughter is in the medical field; no one gets turned away from her hospital because of lack of insurance. She is on the cardiac transplant team in a major medical center.

    A lot of information about insurance and medical care that is floating around, today, is misinformation.

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    1. Ticks caused this apparently although whether he has Lyme's Disease is still unknown until the test results come back but he is being treated for it. Perhaps one of your children could be your advocate now. David's illness is not lymphoma, he has multiple myeloma and experts in this rare form of cancer are not numerous. I'm surprised that your supplement has soared. I haven't heard that from anyone I know. In fact mostly I have heard very good things about what the "affordable health care act" has provided for folks. Even with his illness, so far David's has remained the same. We shall see in December. Perhaps you should check ehealthinsurance.com and see if there is a better policy.

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    2. Oops, when I wasn't thinking when I typed lymphoma. Brain cramp! I will have to look into insurance plans--maybe it's just my company. The bottom line with David is that he got the care he needed thanks to you and Moffitt.

      My kids would be more than happy to be my advocates, but it just isn't the same, and I hate to burden them. In fact, my Living Will has her as my medical power of attorney should something happen where I can't make decisions for myself.

      Hopefully, the results for Lyme come back negative--this might be a one in a million time that the Myeloma helped him by making him sick earlier than it would most.

      Wishing you some non-eventful days and weeks ahead, Sherry. I'm sure you must be exhausted.

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  6. Sure glad you had Moffitt at your disposal and that David is out of that hospital and eating pizza, a comfort food for me too. Take care of each other.

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    1. Thanks Gaelyn. I sure hope we are finished with this.

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  7. Just in time for Halloween. (I'm thinking of the "Hospital of Horrors" reference)
    I think you've actually touched on the true nature of the "problem" with an insurance driven system. Although the medical professionals may start out with good intentions earlier in their careers (I'm trying to be generous) eventually most of them get sucked into the vortex of seeing health care as Big Business.
    Admittedly every health care facility has a budget, no matter what system is being used, but perhaps the opportunity for abuse presents itself more readily in such a system? Hard to pinpoint, but that would be my guess.
    A man eating pizza is always a good thing to see.

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    1. I believe you are right Bob, medicine as big business may be at the root of most of the problems. And perhaps that's not just in medicine but more clearly seen there. I have worked with doctors during their fellowships and many, though not all, have very upright motivations. But later on money seems to cloud everything. Still, there are really excellent doctors and some who were in the bottom of their class. Thanks so much for your thoughts.

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  8. Glad to know you have escaped;o)) Pizza can fix a lot of troubles!!! Can't remember who said it in the Forks Over Knives documentary, but for some it is true..."There's no money in healthy!" Moffitt on the otherhand really is about HEALTHcare. They stake their reputation on seeing that their patient get well!! We certainly are glad you chose Moffitt:o))

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    1. You are so right Nancy, Escaped is just how it feels. Pizza may cause as many troubles as it fixes :-) but it definitely tasted good to David after what he said was the worst food he had ever experienced.

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  9. Hope we never need them, but I added Moffitt to my Florida contact list. Thanks for telling the good and bad, it must be hard for you. Hope hubby is good to go now.

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    1. Tom and Kathy, I'm glad you are here to benefit from our experience. But I hope you never need Moffitt. I want the goal of Health Care Reform to be that all hospitals can be like this.

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  10. My oh my...so glad that David has been finally discharged from hospital hell. Impressed at the level of care that Moffitt is showing both of you. So sorry we couldn't meet up while we were in the area, but I'm sure we will meet somewhere out there in better times :)

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    1. We're sorry we missed you guys too Laurie. We would definitely have had a lot more fun!

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  11. Pizza can help a lot! And that looks like a good one that you guys had. So good that Moffitt had your back!

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    1. We got very lucky on the pizza place, well with a little research. It's a family owned Italian place and they knew what they were doing! Yum!

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  12. That pepperoni pizza sure looked good! So glad to hear David got out of the hospital.

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    1. Thanks Karen. We haven't had a pepperoni pizza in ages and were just too tired to cook and vegan pizza impossible to find. At this point, David feels better than I do. I'm exhausted from all the "advocating". :-)

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  13. So glad David is out and able to enjoy pizza! I'm so sorry you guys had such a disappointing and frustrating experience.

    I was cared for at a smallish community hospital here for my issues this summer and I have to say they gave superb care. I couldn't have been treated with more professionalism, attentiveness, compassion and "humanity." As with all things, I believe it varies from institution to institution, the staff (including one's doctors) associated with the facility and the top-down atmosphere of service the administration sets forth. Warren Hospital is part of the St. Luke's network and a not-for-profit hospital. Heck, my surgeon even gave me his personal cell phone number if I had questions during the postoperative recovery period.

    Just my experience, your mileage will vary. :) The main thing is David is better and home! I'm so glad you have Moffitt to get your back! Gentle hugs to both xxxx

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    1. So glad to hear you had such a good experience. Gives us all hope. A friend wrote the following yesterday after hearing where we were.

      "As you may or may not know the City of Harrisburg tried to file for bankruptcy a short while ago. The city is in debt to the tune of $325 million. A very bad situation. When we were driving in town I noticed that every other home or business was for sale. Literally. Also very bad. So, one has to wonder if all the smart doctors have moved on to other jobs in other parts of the country leaving behind the ones that you are finding so frustrating"

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  14. We are so glad to see David is out of the hospital...thank heavens Moffitt was there for you in your corner even if it was from a distance..I'm sure you can keep an eye on the fevers/temp but is someone monitoring the counts? You must be overtired from advocating..thankfully you are good at it...praying this hurdle is finally jumped once and for all...how long does it take to get the results from the lyme testing? get some rest...thinking of you both...glad you enjoyed that pizza..its a great comfort food...

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    1. Thanks Elaine, good to hear from you. Lymes takes about 3 weeks to confirm. He will be having weekly blood tests and returns to Moffitt in late October.
      I think now I will be able to post some about the things that were actually fun here in Pennsylvania. There were a few of those. :-)

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  15. We're so thrilled to see the picture of David eating pizza (holy cow a non-vegan one, too!) and headed back home with you. Despite all the struggles, you won the battle.

    I know there is some kind of lesson in this for all of us and your sharing the story will help us understand health care and its systems, the ups, downs and pitfalls we all need to know about.

    You've done a wonderful job overseeing David's care and even better documenting the journey for others that may be facing similar struggles, giving them tools to deal with their own battles.

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    1. You are too kind. I do hope that our experience will make everyone more cautious about their medical choices. 9:52 and you aren't out burning up the roads??? Hmmmmm you may be starting your PDD recovery after all. :-)

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  16. What an ordeal for both of you! So glad David has escaped the clutches of the hospital from hell! Now to just stay healthy. We know about Lyme disease first hand and hope that test comes back negative. Fingers crossed that everything continues to improve.

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  17. Nothing like a good pizza to lift your spirits!

    We had the best hospital experience ever at the Mayo Clinic in Scottsdale, AZ last year when Jim had to have emergency gall bladder surgery. Over the years of dealing with our ailing parents, we found our local hospitals to be "hospitals of horrors", too. It's very frustrating.

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  18. My humble opinion about hospitals is if one is sick enough to need a hospital they need to have a 'momma grizzly' with them to advocate on their behalf. David is so fortunate to have you in his corner as his advocate! I concur pizza is a miracle cure for everything!

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  19. UNREAL...what an ordeal. You have to be exhausted for sure! Speaking from my son-in-law's doctoring beef, as an emergency room doctor, he has at times been 5 hours back on patients, even doing his own vitals as can't keep nurses with shortage of them, as well as doctors. Then you get the people who have things as small as a splinter, who come to the ER instead of going to their family doctor. Whole system is messed up. Good to hear about Moffitt and pass on to family and friends if needed. And I'm on the hunt for some kind of good tick repellant...and praying for tons of heavy frost and lots of freezing snow this winter :O) Stay on the upload, get to eating some more fun food, resting, and enjoying being out of that "YUKKO" hospital!

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  20. Sure glad to hear david is out of that hospital! Hopefully now the two of you can enjoy the area a little bit before returning to Moffitt in Oct. Having lived in Valrico area we've always heard great things about Moffitt. Good to hear you feel the same way. Sherry, you take care of yourself too!

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  21. Echoing your readers' sighs of relief that David is out of the hospital and very glad that Moffitt was there for you. Wow, what a nightmare which we hope isn't repeated any time soon! You guys deserved every bite of that pizza!!

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  22. So glad to hear David is home and Moffitt was so responsive to your needs. Maybe another reason to consider "settling" in Tampa.

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  23. I'd be so mad I couldn't see straight, as I'm sure you were! Glad David is home....

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  24. Glad to see David out of the hospital and enjoying his pizza.

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  25. Hallelujah! Unfortunately, none of what you have written about your hospital care surprises me. Thank goodness that you were there to advocate for him. Welcome home!

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  26. Of course, I am so glad he is home...especially after so much incompetence at Harrisburg. Thanks so, so much to Moffitt. I am sure you have thanked them - the paragraph before the 'take home messages' is quite a strong recommendation - I would send that or at least share with someone at the center or with his particular doctors how highly you think of their care. I must say I was impressed by their continual and prompt responses with good advice and obvious understanding of the seriousness of the situation. And, thank you also to you - his best and most amazing helper and advocate!!

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  27. What! An ordeal! I'd be a freakin basketcase ! So now we are subjected to a Hospitalist ... a Hospitalist ... If it weren't so sad that would be hysterical ...

    I think part of any health care person's training should be to check into a hospital as an anonymous patient...

    I tell you ... a body can only just so long without a pizza

    Bless yer bones, Sherry ... man

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