A Little Help From My Friends, Please
I've been sick and in the hospital for many weeks now. A few years ago, I sold some land and have been living off of the proceeds since then. I planned to start up my own web development business. I have no health insurance. My care has hit an obstacle, which I have not found a work around for. I am asking for help from TPM members.
Last January my lower back started to hurt. This was unusual for me. I basically ignored the pain, thinking it would get better. This condition worsened steadily until late July, when I finally went to an orthopedic surgeon. He sent me to get a MRI, which showed I had at least three fractures on three different lumbar vertebra, plus two rib fractures. By then, I had become so sick that it was impossible for me to get down to a radiology lab to get the further needed testing done, under my own power. I just laid down on my bed in severe pain.
A few weeks later, I called an ambulance to come pick me up and take me down to the hospital. Tests done at the hospital showed I am afflicted with multiple myeloma, cancer of the plasma cells in bone marrow. There is no known cure for this disease, although at my age (>60 years) if it can be forced into remission (as it seems to be now), the prognosis for a normal lifespan is very good.
I have been at this hospital for six weeks now. The care I have received has been outstanding. It is the county's (Clark County, NV. - Las Vegas Metro) only indigent care facility, and is also a hospital associated with the University of Nevada Medical School.
I am receiving physical therapy inpatient at the hospital a little less than once daily. I have progressed greatly, but am still unable to stand on my own power. My right leg and lower back are still far too weak. My care has now hit a nasty Catch 22, which is the reason for this post. I am asking for thoughts/advice/pointers.
The recommended chemotherapy for multiple myeloma is thalidomide treatments. Thalidomide is known to cause horrible birth defects, and because of this; all pharmacies, Doctors, caregivers and patients who receive this kind of chemotherapy, also receive training in the proper handling of it. It is only administered on an outpatient basis in Nevada. I need to receive this treatment in order to strengthen my back, yet my hospital physicians are not willing to release me from the hospital, because my back is still too fragile and weak. The county has one rehabilitation facility, but it is scheduled to close down December 1, 2009; not a viable option for me. Until I can qualify for Medicade assistance, no third-party rehabilitation facility is likely to accept me as a patient. Presently, my future looks to be inside this hospital for an indeterminate period of time, without receiving the prescribed care for the multiple myeloma.
My sisters are attempting to work this out through the patient advocacy department at the governor's office. Does anyone think that contacting Harry Reid's (my Senator) staff would also be appropriate? If so, does anyone know who to contact, and happen to have an email address or phone number to reach them at? Any other ideas about this impasse would be greatly appreciated.
I appeal to my friends at TPM Cafe for help in this matter.
Not sure that "casework" would apply here, but this is what I could find at Reid's website:
http://reid.senate.gov/services/casework.cfm
October 23, 2009 7:50 PM | Reply | Permalink
thanks lis, i'll check it out.
October 23, 2009 8:08 PM | Reply | Permalink
Don't forget your Rep...mine is Nita Lowey and she has a pretty comprehensive "Constituent Services" page, as compared to Reid's.
October 23, 2009 8:53 PM | Reply | Permalink
Seems to me on the thalidomide, your sisters are on the right track and yeah, you have to go political, anyone you think could help...your state government, your Federal government, the producer(s) that are making thalidomide now, Jane Brody at the New York Times, the president, your local TV news...
Strikes me you are sort of in the same position as ACT UP was when they were founded, trying to get release of experimental AIDS drugs, and not just keep them in trials stage, though the reasons are not the same, the end situations are. You're dealing with rules that are there for reasons that don't apply to your situation (in this case it's paranoia that it will be administered to some pregnant woman,) which is this could save your life and you're willing to do it. It's all about liability, like you say they will only let "properly trained" people administer it, but in reality it's absurd that a chemo technician in your hospital couldn't make an exception and treat you with it with a waiver on liability from you.
The ACT-UP people showed it's the squeaky wheel that gets the grease with situations like this, when the "rules" strike reasonable people as absurd, you've got to yell "give me a break, I'm dying here."
As for the rehab situation, my anecdotal experience is there are a ton of people in the same boat, it is maddening and makes me angry. You say now you are getting a little less than once daily and in my experience this is pretty standard for a decent hospital for a fully insured patient who is still in treatment for very serious illness.
Both as inpatient and afterwards, this is one area where the wealthy get the quality and the great majority (insured, uninsured, Medicare, Medicare, VA,) get the dregs, unless you are very lucky and are at an institution that has a special program in your illness. The best rehab programs pay talent well and give patients a lot of time and charge a lot, so you take what you can get, beg borrow or steal.
Good luck.
P.S. Did you look for support group type things on the net for those who need thalidomide? I would imagine people who do run into all kinds of problems.
October 23, 2009 8:04 PM | Reply | Permalink
Where are you at in the proceeding to Medicaid process? You have a social worker helping you to get on Medicaid yet or do you still have too much property? That's usually what happens with uninsured in order to continue expensive extended treatment. The only reason I ask is that I think the social worker might be able to help on the thalidomide front as well, if you have a good one. Forgive if this sounds crass, but we're talking about your life here--if you don't qualify yet maybe it's time to speed up your proximity to poverty level?
October 23, 2009 8:14 PM | Reply | Permalink
AA, i just completed the spend down process two days ago, and should now qualify for Medicaid assistance. It's a matter of time now. The whole spend down process is rather odd to me. I was allowed to purchase a brand new laptop and webDev software because I am self-employed in the field. I also prepaid several months of utilities, and one month of rent (need to move - 2nd story apartment, no elevator - that is being worked out presently).
I was assigned a new primary physician at the hospital yesterday. He believes the Medicaid assistance is still a few months away, because of the way Nevada operates. There is no incentive for them to hurry along the process, although in my case, I'm sure some hospital administrators would like to speed it up...
October 23, 2009 8:21 PM | Reply | Permalink
'm sure some hospital administrators would like to speed it up...
This touches on the point I mentiond downthread in response to jan. It seems to me that from apurely practical point of view, the person whose change of mind can do you the most good is some sort of hospital vice preznit for something or other--I suppose the bureaucracy mavens AA alludes to could identify the person--that done, one asks how he/she can be helped in achieving a positive rather than negative job performance this year insofar as the care of Mr. Ants is concerned..
October 24, 2009 2:47 AM | Reply | Permalink
excellent suggestion...you seem to have the same understanding of hospital peeps that I do...They also are always looking at the p.r. angle, either to snag donors or to attract paying patients, depending on what kind of institution they are. (I also think lots of people misunderstand this within the current debate on health insurance to their peril; to hospitals, it's not about whether this patient or that patient has health insurance, they have other "for profit" considerations that trump that, even if they are non-profits.) If it was good for their rep to get certified to dispense thalidomide, they'd do it pronto, they'd be lobbying to be able to do it.
October 24, 2009 9:25 AM | Reply | Permalink
Important: the above were rhetorical questions, something to bring up with your sisters, not to answer here.
October 23, 2009 8:23 PM | Reply | Permalink
Important: the above were rhetorical questions, something to bring up with your sisters, not to answer here.
October 23, 2009 8:29 PM | Reply | Permalink
AA, thanks for the ideas. Truthfully, I have been leaving the advocacy end up to my sisters almost entirely, because they have been relentless, and far more competent at it than I could be. This has left me free to concentrate solely on getting better, which I believe has greatly aided my recovery so far.
I am planning to let my sisters do the brunt of the work attempting to break this impasse too. They are willing to work hard on my behalf, and try to get me the proper care, and tell me that my job is to simply try and heal. I am proud to be a member of this family.
October 23, 2009 8:14 PM | Reply | Permalink
tell me that my job is to simply try and heal
They are so right about that, too!
Though I sense a little distraction with the politics of it, maybe some short strategery meetings from time to time, might be good for someone like you, to keep your mind in it's normal state. :-)
October 23, 2009 8:20 PM | Reply | Permalink
PseudoCyAnts, I'm so sorry to hear of all your troubles. As if the diagnosis and aftercare of your disease isn't enough of a burden, you still have to worry about those who may not see your life as worthwhile, based on your ability to pay. Will they work as hard for you? In a fair world, they would. Unfortunately, we're seeing the effects of prolonged greed and ungodly selfishness in the very area you will have to count on now -- the health care industry.
I applaud your sisters and would elevate them to sainthood if I had it in my power. You need all the advocates you can get, and how wonderful that it starts with your own family.
So can I suggest that you focus on getting well and leave all that nasty paperwork and stuff to them? Read light stuff, funny stuff, watch the clouds go by, find something beautiful to gaze upon, choose music that uplifts, and let yourself float away.
Not easy, I know, but you are in good hands. Do your job and let your sisters do theirs.
I wish I had more concrete advice. Something that would actually take care of all of your problems. All I can do is remind you to take care of yourself.
Which, I'm sure, is not news to you! My thoughts are with you. Ramona
October 23, 2009 9:39 PM | Reply | Permalink
paranoia that it will be administered to some pregnant woman,)
Bearing in mind that before I was rehabilitated, I was about as aggressive in inventing potential breaches of the standard of care as any gunslinger in town, even I would have a hard time mau-mauing an errors and ommissions adjuster about how PCA turned out to actually be a cleverly concealed pregnant woman and there are possible deformed baby damages subject to to discount to a reasonable settlement figure.
October 24, 2009 3:31 AM | Reply | Permalink
Oy! I am so sorry to hear this PCA. Having been suffering from pain from a damaged disc for the past two years, I can only imagine what you must be feeling. If you think writing letters on your behalf will speed your qualification for Medicade, let us know, and consider it done.
October 23, 2009 8:06 PM | Reply | Permalink
no need to write letters for me yet. if it gets to that point, i'll let you know though. thanks for offering.
what do you think of this? it's a recent attempt to photochop my perception of my present situation.
October 23, 2009 8:31 PM | Reply | Permalink
I thought you were an ant. Now you tell us you're a toad? Ahh... the anonymity of the internet... I'm not sure if you're an ant, but, I'm pretty sure you ain't no toad. Heal well amigo.
October 23, 2009 8:45 PM | Reply | Permalink
I'm pretty sure he's an ant.
October 23, 2009 10:13 PM | Reply | Permalink
But he sounds like an uncle ... {ouch!} ... sorry.
October 24, 2009 1:45 AM | Reply | Permalink
Psuedo, I am so sorry to hear about your profound problems. I am a nurse, but not in this field at all, and so can't give specific advice, but I agree with LisB to go ahead and contact Reid, but he probably has a full plate at the moment and will not put it at the top of his list.
I feel sure that you have done research, but in case your pain and worries have kept you from that, here is the main resource for Multiple Myeloma:
http://www.youtube.com/watch?v=q2QX9sMV5xI&feature=player_embedded
One thing I would suggest is to see if you can get into a clinical trial. The advantage is that you don't get stuck in the infuriating thing you are in right now, like needing a drug that can only be delivered where you are NOT!
ArtApraiser is right on the money when she suggested a support group; often they are the most savvy when it comes to getting around bureaucracies.
I am so sorry you are going through this. I wish I could help, but I am 3,000 miles away. If there is something I could do, please tell me.
October 23, 2009 8:18 PM | Reply | Permalink
the thalidomide chemotherapy is supposed to be part of some kind of clinical trial. one of my sisters works for oncologists at a cancer institute in Loma Linda CA, so she is trying to get 2nd opinions from them too.
I know we are too far apart for any physical interaction Cville. I still appreciate your kind thoughts, and am trying to stay focused on getting well without letting negativity get into the way. So far, i;ve been mostly successful in this, although have been depressed for short periods here and there along the way. it's been six weeks on my back in the hospital already, including 4 straight weeks in a Foley catheter. I got out of it without a urinary tract infection, and hope to never experience a Foley catheter personally ever again.
October 23, 2009 8:39 PM | Reply | Permalink
Somehow, I linked a bogus site. This is the right one, sorry!
http://www.multiplemyeloma.org/
October 23, 2009 9:02 PM | Reply | Permalink
am trying to stay focused on getting well without letting negativity get into the way. So far, i;ve been mostly successful in this, although have been depressed for short periods here and there along the way. it's been six weeks on my back in the hospital already, including 4 straight weeks in a Foley catheter. I got out of it without a urinary tract infection
I would like to offer mho, judging from my experience with family and friends that have served a lot of time as inpatients, you are doing extraordinarily well!
That you haven't had complicating infections is incredible, that's a biggie, they are almost to be expected.
But that you can communicate here like you have been doing and write sounding just like you used to is even more incredible. I'm serious; from what I've experienced, I think the average patient stuck in a hospital bed for weeks/months after going through the stress of bad diagnosis like you did gets mentally ill in some way, not just depression but all kinds of personality changes, or periods of paranoia, or just going catatonic. (How could most people not? Even death row prisoners get breaks from their room.)
To me, what you say here speaks very well for your prognosis! You show a lot of signs of having the "whatever it is" to make it through.
October 24, 2009 9:30 AM | Reply | Permalink
needing a drug that can only be delivered where you are NOT
Somehow that must raise a standard of care issue...I would think the simplest solution would be either to get an attending at the hospital certified (maybe on an emergency basis??) or the hospital hires a certified person on an adjunct basis.
For motivation, (since nothing turns a doc off like an alienated patient, and you don't want to be muttering anything that might even be mistaken for the words "standard of care") maybe you execute a living will with an extraneous clause that accidentally gets in directing that so and so is to be considered your legal proxy for purposes of pursuing any causes of action accruing to your estate on account of the hospital making proper treatment impossible, or failing to make it possible...sumpin like that.
This is, of course, the legal advice of a stripper, and therefor worth what you are paying.
October 24, 2009 2:26 AM | Reply | Permalink
my sister that's married to a MD (Ob/Gyn) is the one who brings up standard of care issues with the doctors and hospital admin. she is able to do this without the concomitant lawsuit issue coming to the forefront, because of this.
October 24, 2009 8:15 PM | Reply | Permalink
I hereby render unto you the Dayly Blog of the Week Award for this here TPMCafe Site given to all of you from all of me and many others, PCA.
I am with Miguel on this. AA is correct.
The county commissioners, the state legislator from your district, the Congressperson from your district, and both Senators from your state.
We should take time and hit some other sites on the web as well. Advocates and charities....
A lot of guts PCA to Open up like this.
YES YES YES
October 23, 2009 8:20 PM | Reply | Permalink
Yep.
I wonder if we ALL contacted the same people as a group... might that make a dent?
I am opening up the pharmacy right now and Saturdays are crazy for a few hours... and then I've got a VERY busy day ahead of me... I likely won't have time to do the research until tomorrow evening to be honest.
I'll check back then to see... If there's nothing, I'll track down a few bits of contact info.
In the meantime, perhaps some of you fine folks could find and Post (in one neat comment) lots of various contacts and their contact info.
If each of us write a letter to each of the contacts, we just might get their attention.
Thanks, Cy, for once again sharing your story with us. Lots of good vibes comin' your way.
October 24, 2009 9:45 AM | Reply | Permalink
Cyants, instead of Reid, aim for the Representative for your district. They are 'closer to the ground' shall we say. Look up their website. If theirs is a large district, area wise, they will likely have field offices spread out over their district. Many times the top aide (sometimes the entire staff of a field office consists of one person) in each office has a specific area of expertise. Or call the main office and ask whoever answers the phone to speak to the person that handles the casework for emergency medical situations. Well, have your sisters do this. You keep resting and building up your strength. You might get farther faster this way rather than dealing with a Senator.
October 23, 2009 8:49 PM | Reply | Permalink
that would be Shelly Berkley. thanks flowerchild
October 23, 2009 9:33 PM | Reply | Permalink
In case you haven't looked into it yet, would the International Myeloma Foundation be of any use to you?
http://myeloma.org/
October 23, 2009 8:50 PM | Reply | Permalink
thanks fred
October 23, 2009 9:19 PM | Reply | Permalink
Hey Fred, not to put you on the spot but I bet of everyone here you have the best knowledge and best connections for Cy's situation.
I confess I don't know jack. I will call and pester his reps if that is what will help (Cy-just say the word). Frankly, I hate being helpless and I'm probably just pestering you because I think you might know something useful. But this pisses me off to no end (Cy- I have a lot of faith in you, and your sisters).
October 24, 2009 5:59 AM | Reply | Permalink
Hi Sal - I'm familiar with multiple myeloma in a medical sense, but not in the sense of personal familiarity with resources that PseudoCyAnts could utilize. I am aware, however, that many conditions are associated with websites that can provide a guide to resources. It's important to be sure they are reputable, because some are not. I came across the International Myeloma Foundation site I linked to above, recognized some of the professional names involved, judged that it made accurate statements about myeloma, and saw that it offered a range of resources, support services, and the like, and that its content was what I would expect from a helpful site. That's why I think it would be worth contacting.
October 24, 2009 11:31 AM | Reply | Permalink
Psuedo, Have you checked out the VA? I know they get a bad rap from some but I have had very good experience with them. Where I am at they bring in outside specialists so it might be a way to break through a bureaucracy that only knows how to say no.
Also,I don't know their money/asset parameters for providing aid but they don't require you to be completely broke.
I am about nine hours away and there are many times when I could get away if there is a way I could help.
Hoping everything breaks your way.
October 23, 2009 8:58 PM | Reply | Permalink
Can you swing by and pick me up?
I want to read Cyants the newspapers.
I want to more than read. I want to help our friend.
October 23, 2009 9:12 PM | Reply | Permalink
I'd be happy to.
October 23, 2009 9:20 PM | Reply | Permalink
Lulu, for my own reasons, i prefer not using the VA. i know my reasons do not make complete sense, but it has to do with a personal oath i made to myself a long time ago. if i am able, i will not use the VA, please just take it at face value and do not question my rationales.
October 23, 2009 9:22 PM | Reply | Permalink
I am sending you lots of love and support for the challenges you are facing.
I worked with an organization you can find at
www.circleofhearts.org.
I was on that board for a while during a period when I encountered many people in my life fighting cancer. The young woman who created it is a brain cancer survivor. She is pretty hooked up when it comes to all of the varieties of care as she works to support others dealing with cancer as well as continue her own recovery. It wouldn't hurt to get in touch with her and see what support she can offer.
October 23, 2009 10:29 PM | Reply | Permalink
i'll check it out. thanks
October 23, 2009 10:38 PM | Reply | Permalink
I'm so sorry you are in these straights. I wish I had a solution. In lieu of that I guess it can't hurt trying to use the Senator's office for assistance. It is amazing what those constituent service people can get done at times.
I don't mean this in jest but if you know any rich people now would be the time to contact them. And if you don't, there are often people in the churches who do. If you have a church affiliation... use it. If you don't, there are very few hospitals that don't have local clergy on call. You might talk to some of those people to see what they might do to help.
One last possibility is always the local tv news people. Often they will have a consumer protection reporter or a medical reporter and they might be able to shed some light on your situation and generate help that way.
If I was rich I would take care of it myself, but I'm not. Meanwhile, I pray you'll get all the assitance you need and for your very swift recovery. Pax vobiscum.
October 23, 2009 10:46 PM | Reply | Permalink
It's like a sock in the gut, isn't it.
October 23, 2009 10:50 PM | Reply | Permalink
At least.
October 23, 2009 11:03 PM | Reply | Permalink
It's like a sock in the gut, isn't it.
More like the entire foot with shoe still attached. :-).
{{{TruckNutz!!!}}}
October 24, 2009 1:52 AM | Reply | Permalink
{{{butt sects!!}}}
...and also...
;)
October 24, 2009 3:07 AM | Reply | Permalink
Sucks, P. I am not able to give useful help beyond the great suggestions others have offered. Keep talking to us.
October 23, 2009 11:55 PM | Reply | Permalink
i'm trying to be open about this. it is topical. i am TPM's poster boy for the uninsured.
October 24, 2009 12:03 AM | Reply | Permalink
Hi PCA - Hugs from me and Sen Reid info to start you off.
Sen. Reid has 3 offices in Nevada. Here's the Vegas office info (the other 2 will be at bottom of post, just in case):
Las Vegas Office:
333 Las Vegas Boulevard South, Suite 8016
Las Vegas, Nevada 89101
Phone: (702) 388-5020
Fax: (702) 388-5030
Sen. Reid has a casework page set up with what he can offer in the way of help with Federal services.
Detailed information is available in the following areas:
He also has a Privacy Act Release Form that should be filled out, signed and faxed to him so he can act on your behalf.
Other federal problems: Any other federal problems should be addressed by forwarding the my privacy release form to one of my nearest state offices.
The links on the casework page should give you and your sisters a good idea of what Sen. Reid's state office can do and the initial contact information for getting the ball rolling.
I'll be back soon with Shelly Berkley's state contact and services information. :-)
Reno Office:
400 South Virginia Street, Suite 902
Reno, Nevada 89501
Phone: (775) 686-5750
Fax: (775) 686-5757
Carson City Office:
600 East Williams Street, #302
Carson City, Nevada 89701
Phone: (775) 882-7343
Fax: (775) 883-1980
October 24, 2009 12:46 AM | Reply | Permalink
OK. There's not much difference, if any, between the casework services offered by Sen. Reid and Rep. Berkley, as far as I can tell. Rep. Berkley's info:
District Office:
2340 Paseo Del Prado, Suite D-106
Las Vegas, NV 89102
Phone - (702) 220-9823
Fax - (702) 220-9841
Wash. D.C. Office
405 Cannon HOB
Washington, DC 20515
Phone - (202) 225-5965
Fax - (202) 225-3119
Caseworkers in the district office are on hand to provide you with assistance in dealing with Federal agencies including: the Social Security Administration, the IRS, the Veterans' Administration, Medicare, the military, passport assistance , immigration, disability, and federal employment offices.
Rep. Berkley also has a Casework Authorization Form that needs to be filled out and signed should you choose to work with her. (Note that she wants the original returned to her office.)
Do you think it would be worthwhile to contact your state representatives? Any idea who they are?
:-)
Let me know how I can help, OK? Peace and {{hugs}}.
October 24, 2009 1:43 AM | Reply | Permalink
Ooops.... I didn't read the entire thread before posting above! Sorry!
Thanks for getting the ball rolling, Seashell :)
October 24, 2009 9:48 AM | Reply | Permalink
Seashell! You are simply awesome! Getting that info together for Cyants. I am sending you mental cheezburgers as I type. :o)
October 24, 2009 10:07 AM | Reply | Permalink
And I eated them while I was reading! Thanks, flower. You are a good friend to puppies.
October 24, 2009 12:09 PM | Reply | Permalink
thanks seashell; you always seem to have good information for me to use.
October 24, 2009 11:44 AM | Reply | Permalink
Adding to everyone's useful suggestions, here is more info on Clinical Trials:
Search Terms: multiple myeloma AND thalidomide
Found 35 trials that are currently open.
October 24, 2009 11:57 AM | Reply | Permalink
The University of Utah has a Myeloma Program at Huntsman Cancer Institute (close to you?), with an open myeloma clinical trials page and lots of information.
HCI 19827
"A Stratified, Randomized, Open-Label, Multi-Center Comparative 2-Arm Trial of PK, PD, and Safety of Zometa Infusions Administered Monthly vs. Every 3-Month, In Multiple Myeloma Patients with Malignant Bone Lesions, and Breast Cancer Patients with Bone Metastasis, Who Have Reveived 9 to 12 Doses of Zometa® Over the Prior Year"
HCI 25009
"Tandem Autotransplantation for Multiple Myeloma Patients with less than 12 months of Preceding Therapy, Incorporating bortezomib with the Transplant Chemotherapy and During Maintenance"
HCI 26679
"Phase I Study of Disulfiram and Copper Gluconate for the Treatment of Refractory Solid Tumors Involving the Liver"
HCI 32829
"Phase I Exploratory Study of Panobinostat IV in Combination with Bortezomib in Relapsed/Refractory Multiple Myeloma Patients"
HCI 32857
"A Phase I/II Open Label Study of IV Busulfan (Busulfex®) in Multiple Myeloma Patients 65 years of Age or Older, or with Renal Insufficiency undergoing Autologous Transplantation"
HCI 33979
"Effect of Low Dose Bortezomib on Bone Formation in Smoldering Myeloma Patients"
HCI 36662
"A Phase I Open-Label, Multiple Dose, Dose Escalation Study of ACE-401 in Patients with Advanced Solid Tumors or Relapsed/Refractory Multiple Myeloma "
October 24, 2009 12:06 PM | Reply | Permalink
nice seashell;
i passed this along to my sister that is working on getting me into a program, and will check them out myself, as time/will allow.
October 24, 2009 1:13 PM | Reply | Permalink
YES WE CAN!!!
I'm not waiting for or worshipping Obama, just borrowing his mantra.
October 24, 2009 1:49 AM | Reply | Permalink
Sorry to hear about this, CyAnts. There seem to be plenty of good suggestions here.
Best,
Tom
October 24, 2009 7:56 AM | Reply | Permalink
I like Oleeb's teevee news idea. Talk about a human interest story! A sick PsyAnt vs. the System! There have been a number of stories just lately about folks who made the news getting help. Think of the Fat Baby from Colorado story.
The baby scored above some percentile (94?) in weight, and was denied medical insurance coverage. The father got it on the news, and the insurance company relented. Other stories have been more extreme in needs and benefits.
It would probably rankle immensely to go public; but if no other help helps, it's sure a thought.
I hope our collective love and caring for you comes to you in enormous waves and helps to strengthen and heal you, dear. Many of us know what it is to suffer pain and fear and extreme frustration.
We are pulling for you.
October 24, 2009 8:11 AM | Reply | Permalink
Jolly Roger's comment above @ 2:47am inspired me.
You say of your hospital: the county's (Clark County, NV. - Las Vegas Metro) only indigent care facility, and is also a hospital associated with the University of Nevada Medical School.
This said to me that the local political angle that your sisters are pursuing is a very important one. (And I would not dismiss trying to use local TV if they get nowhere with what they are trying first.)
Then, I did some quick surfing of U Nevada Med School. They are just starting an oncology fellowship and residency where they did not have one before. It sounds like they are quite proud of this,
http://www.medicine.nevada.edu/residency/LasVegas/internalmed/oncology.asp
they say We look forward to selecting a talented and accomplished group of physicians to be part of the first Oncology training program in Las Vegas.
If they will be using your hospital, they should surely want to be able to have their new residents study the use of thalidomide on patients like you? State of the art, you know.... get my drift?
Just a suggestion for yours sisters, this is how you have to think: It is not about charity, you are not asking for charity, what you want is top quality state of the art care for Nevada's citizens....and a great teaching hospital for those new oncology residents, etc. etc. :-)
October 24, 2009 9:53 AM | Reply | Permalink
Do you know which outpatient clinics are able to provide the treatment in the surrounding counties? Following the line of thinking AA put forward in getting the UN med school involved, such information could provide some leverage with them and others.
The fact that the clinic in your county is closing has got to be putting other people into a bind. Knowing exactly what alternatives exist in the state would give us internets people a way to investigate that. If you are destined to become a boot wearing Poster ant, you might as well be a Local Hero as well.
October 24, 2009 10:45 AM | Reply | Permalink
I tried to answer my own question about clinics and didn't find anything yet.
I got curious about the "third party clinics" you referred to and see that Comprehensive Cancer Care appears to give the treatment in Clark County. Now this Doctor is a part the outfit and also appears to be a big fish in the State's Medical society. Maybe the sisters could shoot these people some questions about their requirements.
October 24, 2009 3:33 PM | Reply | Permalink
data received and passed along. thanks much moat.
October 24, 2009 8:21 PM | Reply | Permalink
Your mention a while back of your catheter had stayed on my mind. I have little to contribute in expertise, but I did nevertheless want to wish you all the best, you brave person.
October 24, 2009 10:55 AM | Reply | Permalink
By the way, there are clinical trials for thalidomide treatment of myeloma that are recruiting. This does not solve your current predicament, but it may be useful information in the not distant future.
http://clinicaltrials.gov/ct2/results?term=thalidomide+myeloma
October 24, 2009 11:06 AM | Reply | Permalink
this may be very helpful; thanks. i did not even know about clinicaltrials.gov before.
October 24, 2009 11:46 AM | Reply | Permalink
PCA, sorry you have run into what seems to be an administrative blockage - the medical ones are bad enough.
I agree with seashell and the excellent sources provided. You are likely to have more luck with your state rep or senator than with federal.
I did a quick search and there are a bunch of studies on thalidomide and multiple myeloma. I saw nothing about it needing to be done on an outpatient basis. Nor did I see anything that said that chemo (to which the drug is an adjunct) being on an outpatient basis. Therefore, it would seem to be a bureaucratic decision. Perhaps it would be good to find someone who can explain the basis of the policy and then fight through that channel.
It would also be helpful if you could find an advocate - preferably a doctor on your care team - who would be willing to make the suggestion. Failing that, an outside opinion on inpatient use of the treatment. However, that is ammunition for an apparent administrative fight.
Regardless, it sucks and I am glad your sisters are there to help. This type of snafu does not help the healing (or dealing) process.
If you need a letter writing campaign to kick someone in the butt, I think TPM would be a good place to start.
While I don't recommend it at this point, contacting a reporter at the Sun or Review Journal might be possibility.
There is that balance between getting the treatment you need and maintaining good relationship with the hospital. I imagine it hangs in the back of your mind (it would mine) that pushing too hard jeopardizes your care.
Please keep us informed of your how you are doing, and how this is progressing.
Good luck, and know that lots of us care about you.
October 24, 2009 1:06 PM | Reply | Permalink
PCA - This looks like a VERY good prospect:
Best of all:
Financial Assistance Program
Consistent with its mission, City of Hope provides free or reduced cost medical services to persons who are unable to pay for their care. Please discuss your individual needs with a City of Hope financial counselor in Financial Support Services, extension 62715. Upon completion of a Financial Assistance Application Form, along with the submission of all required documents, you may be eligible for financial assistance as defined by the City of Hope Indigent Care Policy.
October 24, 2009 1:07 PM | Reply | Permalink
seashell, this is indeed a very good link, but again, presently, i am unable to go anywhere, because my attending physicians do not feel my back is strong enough to be released from the hospital, and as i don't stand by myself alone now, i agree with this assessment.
it feeds back into the catch 22: i need special care which can be provided externally to the hospital in order to strengthen my back, but my back is so weak, i cannot be released from this hospital. it's ugly to contemplate, and all i can do is try to get stronger through the inpatient physical therapy.
if i think too hard about this, i'm liable to become frustrated and depressed, so i'll let it slide onto my sisters' plate. kind of mean, but it the way it needs to be right now. it's hard for me to admit that i need help, but i do need it.
October 24, 2009 1:28 PM | Reply | Permalink
It's not mean to slide your plates around, PCA. People feel better when they can do something.
According to this map, it's a 4-5 hour drive from your hospital to City of Hope- mostly via I-15. Would you be able to make that with a sister at the wheel, and would your doctors let you maybe?
Or should I look into financial assistance for ambulances? :-)
This is all I have for right now. Hope it wasn't too much. Just want to help my friend.
October 24, 2009 2:24 PM | Reply | Permalink
I am a little confused, are you asking for help to get thalidomide in the hospital? I hope not, because that will never happen.
October 24, 2009 2:21 PM | Reply | Permalink
i am asking for help in getting around this catch 22. if i cannot get the chemo inpatient at the hospital, i understand why, but still would like help/advice on a different workaround.
being negative about my circumstances is easy. i want to think about solutions though, not failure.
October 24, 2009 7:05 PM | Reply | Permalink
(Cy – we have spoken elsewhere and you know of my concern and my empathy for you. Your friends here have offered many good suggestions. If you need more then ask for them and they will surely be forthcoming.)
I was once in a conversation with a very famous defense attorney. His response to my complaints about the corrupt judicial system was “Don’t complain about the corruption. It is the only way we get any justice around here.” Yours is the right to do everything you need to do to secure your health. So do what you have to do and be at peace about it. Veterans hate war and the sick hate disease. Both want peace because they know. Peace is won through the efforts of all, not just the veteran and the sick. So use politics and publicity and the generosity of others to work with you toward your goal.
October 24, 2009 2:23 PM | Reply | Permalink
There are other treatments other than thalidomide for which there are trials listed. The clinical trial database can therefore serve as a source of information for other available therapies which may not be listed elsewhere. There is even a listed completed trial, if you should search, done by the Mayo Clinic and the National Cancer Institute which surprisingly involved an inexpensive, over-the-counter hormone, DHEA. There is much to be found within this drug trial database which could serve as clues for further research.
October 24, 2009 2:49 PM | Reply | Permalink
Intended as a response to this.
October 24, 2009 2:53 PM | Reply | Permalink
Even though Thalidomide is only available to treat Multiple Myeloma through clinical trial, that is not because they are uncertain if it works. Thalidomide is currently the best medication for MM. It has become nearly the standard of care for patients suffering from MM, whether they have had a bone marrow transplant or not.
The reason it is available only by clinical trial is that Thalidomide was never approved for use in the United States. It is an old medication that has finally found a use. It is also extremely dangerous to pregnant women.
October 24, 2009 3:05 PM | Reply | Permalink
Are you saying that even if the hospital gave PCA permission to go to an outpatient clinic that they would not let him come back right away because of the risk Thalidomide poses to others?
October 24, 2009 3:37 PM | Reply | Permalink
PCA: I don't know if the following will be helpful, but just in case, perhaps your sisters could contact:
http://www.cis.unr.edu/CampusDirectory/index.aspx?AcceptsCookies=1
I suggest this end run through the psychology department because, in South Carolina, a friend with pancreatic cancer -- one who was without medical insurance -- was able to put together a package of physiological treatment, including drug treatment, based not on her diagnosed medical condition but, instead, on her level of "depression" which was diagnosed at the Psychiatric Institute of the university.
That department had a current grant to study the relative well-being of patients suffering dire phsyiological stresses; she was selected for the study, and through the influence of the physician in charge of the study, was given the bureaucratic support she needed to get the medicine she needed.
It was difficult for her; as a focus-on-the- positive person, she did not want to spend one minute talking with psychiatrists and psychologists about her mental health. But she took a Machiavellian view that the ends justified the means, participated in the "depression" study and through it, gained the pharmacological treatment she needed.
It was humility well-spent. Three years later, she is cancer-free.
I hope this is helpful as a flank attack on the problem.
Be well, PCA. Whatever it takes.
October 24, 2009 3:38 PM | Reply | Permalink
Psuedo, while your body is restricted I know your mind stays busy. Right now it is obviously busy with medical concerns. Anyway, the video link does not go to your particular problem but is about medicine as an art, science as science, where spirituality overlays, and in part how they all come together. It is an interesting conversation that you might like to listen to.
Cheers.
http://bloggingheads.tv/diavlogs/23344
October 24, 2009 4:02 PM | Reply | Permalink
More on your thalidomide problem, had some more time to look around.
Bear with me if you already know this first part...
I came across this (BTW you yourself might think about writing to this guy, his email is on there--and looking at his bio, which says he has been a software geek like you for 15 years, I can't imagine that he'd be writing about thalidomide treatement for myeloma unless he had personal experience):
So then I put "STEPS thalidomide" into google and found out that fascinating information that it appears that the STEPS thalidomide program is not like any other controlled substance but was negotiated with the F.D.A. by the drug company that makes it, so they could sell it. The name STEPS has even been copyrighted by them.
If I were your family, I would definitely call them up for help. They would know better than anyone exactly why you were told you cannot get it where you are, and how it might happen that you can get it. (If you combine this with the news that the university is going to have oncology residents soon, they may be working on getting it distributed by your hospital, who knows!) They may also have a charity program, a lot of drugs like this do.
If it's the case that the STEPS program is for oral treatment and what you need is intravenous, and that complicates the situation, or something like that, I am sure they can give you the skinny on that, too.
In any case, it's in their interest to have it more easily available in a big city like yours. They might be able to do something like have a doctor in your area that they already have registered get privileges at your hospital, or contact your hospital's pharmacy, get what I am thinking? You can't really know what they might be able to do until you call them. Whatever their answers, you will have more knowledge to devise proper strategy.
It looks to me that it's Celgene in charge of the distribution of this drug, so that's who you should talk to.
One good thing I see in this whole mess is that it's clear the treatment was not suggested for you out of "money-driven medicine" motives--instead they're telling you it would be good for your case but they can't get it. (I am very skeptical of all doctors' prescriptions, just the kind of gal I learned to be, through hard experience.) Now, you can do a switcheroo and see if you might be able to put some of those "money-driven medicine" motives to work for your benefit by calling the drug company.
Once again, good luck. No need to respond.
October 24, 2009 4:12 PM | Reply | Permalink
Also, I forgot to mention, in Allan Robinson's article he says
The National Comprehensive Cancer Network (NCCN) also recommends the use of thalidomide with prednisone as maintenance therapy.
So you should also get in touch with them, too.
A story. I got a free mammogram this year from an American Cancer Society program; I saw their ad at the university dental clinic I was going to, and did it to save out-of-pocket cost and to avoid the 4 month wait for out-of-pocket mammograms in NYC. And I was pestered by quite a few follow-up phone calls from not one but two American Cancer Society social workers afterwards (just joking, it was well worth putting up with their phone calls.) I didn't need their help because I have a regular doctor who wanted me to get a baseline mammogram, and that's what I was doing. But first they wanted to know how everything went, then when I had to have a second screening, they followed that up with several calls, too. Then they sent me a free colon cancer test kit and wanted me to do that (I declined due to not being able to fast, but if I had, I am sure there would have been just as many follow up calls.)
My point: it was clear that their entire job was to follow people who had used the service around and make sure that they don't have cancer, and if they do have cancer, that they are being treated for it. They told me straight out that if the mammogram was positive and I needed help getting treatment or qualifying for Medicaid, they would help me.
So getting in touch with this NCCN might find you some busybodies of the type I didn't need but you do, some busybodies just sitting there waiting to get more cancer treatments into the hospital you're in? After all, this is exactly why people donate to organizations like the American Cancer Society.
October 24, 2009 4:29 PM | Reply | Permalink
AA, outstanding information; thank-you very much. It is difficult for me to do any real research online. I become fatigued before completing it, and find it hard to pick-up in the middle again later.
You know me well enough to understand what a change this is for me.
In an earlier response, you mentioned that in your experience, it was common for persons locked i to long-term hospital care to become depressed and crazy. I have been insane at the hospital already, and have worked hard to erase the paranoia from within my mind. No one at the hospital is out to cause me direct harm.
I would continue, but presently am in a great deal of pain. It seems that my pain med authorization has expired, and my physician has yet to make his daily rounds yet, where I will get this resolved. Until then, my lower back is aching too much for any longer reply.
thanks AA, for all your help here.
October 24, 2009 5:43 PM | Reply | Permalink
and have worked hard to erase the paranoia from within my mind. No one at the hospital is out to cause me direct harm
Wow, thank you so much for admitting that, now I know it is not just a quirk with my relatives. The first time I experienced it was with my Mom, it was exactly as you describe, she was afraid someone was trying to get her, especially at night when the noise and activity quieted down. I was so upset and frustrated as I thought my father and others weren't dealing with that that I went and bought her a personal alarm and FedEx'd it. It appears that this is something hospital care for the long term bed bound really isn't addressing and they should.
As for your pain med problem, it riles me to hear it, so much you can't know. Too many people think because they read about pain management specialists being a new hot field, that everything is doing pretty well on this front. It's not in my experience. For the average person without really premium gold level insurance coverage, pain management is often still a big problem, not that much has changed since Shirley MacClaine had to scream at the nurses to give Deborah Winger her shot in "Terms of Endearment."
I myself have run into it in a minor way recently, at the university dental school I've been going to for about a year, it's become pretty clear to me from what's happened to me and from seeing others get treated (in the big open room) that they basically don't allow the professors or students to dispense any of the standard pain pills that most dentists give you a little script for (like 10 pills) after something like a root canal. They just tell you to use ibuprofren or ice over and over. I had one two-week long bad reaction, had to take massive doses of ibuprofren for it in order to sleep, and that made my old GI tract problems flare up real bad. My student dentist took pity on me and gave me a novocaine shot a couple of times when I came in so I would have a few hours of relief. It was clear from what she said, though she said it in a coded way, that they couldn't give me anything else. One thing, I think it's probably the nature of institutions that have poor populations as a large part of their patients that they just would rather not deal with narcotics in any way, that it's too dangerous for them.
But I've also seen the prejudice against pain management in just average insitutions, and for people with good insurance, it's still very much there. Also have run into providers that still think along the lines of pain being good, part of the healing process, or they just lazily want to leave some of the pain there because it helps them diagnose.
October 25, 2009 3:09 PM | Reply | Permalink
AA, this is outstanding information!
October 24, 2009 11:18 PM | Reply | Permalink
oh, I think I'm a pretty damn good researcher but I've got to say that this time I just got lucky. Especially in medical, you can end up sorting through morasses for hours and hours, keyword skills don't work exactly the same as in other fields. Actually I got a sense from the my quick results that there is a lot of info. on the net produced by laymen on multiple myeoloma, and to me that bodes well for pseudo. It's not that such info. is always the best to pursue, but it means that there are more sufferers and survivors than one might think.
October 25, 2009 2:41 PM | Reply | Permalink
Maybe you could contact the particular doctors who have written on the subject and find out if they have suggestions
J. McCredie and HG Willert
http://www.wheelessonline.com/ortho/limb_length_inequalities_growth_deformities
Longitudinal limb deficiencies and the sclerotomes. An analysis of 378 dysmelic malformations induced by thalidomide.
J. McCredie and HG Willert. JBJS. Vol 81-B. no 1. Jan 1999. p 9.
http://www.wheelessonline.com/ortho/hypoplastic_thumb
October 24, 2009 10:38 PM | Reply | Permalink
http://www3.interscience.wiley.com/journal/116332289/abstract?CRETRY=1&SRETRY=0
The evidence for the spinal segmental innervation of bone
Jason J. Ivanusic *
Department of Anatomy and Cell Biology, University of Melbourne, Victoria, Australia
email: Jason J. Ivanusic (j.ivanusic@unimelb.edu.au)
*Correspondence to Jason J. Ivanusic, Department of Anatomy and Cell Biology, University of Melbourne, Melbourne, VIC 3010, Australia
October 24, 2009 10:49 PM | Reply | Permalink
Ant, it looks like you have gotten a ton of good ideas and enough reading to keep you busy for awhile...I have nothing to add, other than my best wishes.
For some reason I thought you were in Reno, not Las Vegas...I'm in Sac, and thought I was just over the hill from you. I was looking forward to being able to come over and visit when you got the urge to see a fresh face :-(
I'm so glad you have dedicated sisters that are able to advocate for you...Be well, my friend.
October 24, 2009 10:58 PM | Reply | Permalink
Stopping by to say it is good to see you turning up regularly on my dashboard recommending things, bodes well that you have enough attention span to do this rather than stare at the wall or at the poor offerings of a minimum service cable TV subscription. (Though I am aware that working a computer keyboard might be so ingrained in your nervous system that it is soothing to you, hah.)
Also to highly recommend this article in Tuesday's New York Times Science section on mainstream medicine's current big picture on cancer:
http://www.nytimes.com/2009/10/27/health/27canc.html
Despite the title, which is a bit dangerous in its unrealistic hope giving abilities, I think it is such an extremely well written summary. Apparently a lot of people agree with me, as it is on the Times' "most emailed" list. I would think if one had a cancer diagnosis, it would give one a very helpful big picture understanding of what your treatment protocols are trying to do or should be trying to do, whatever they are, and what you might do to help the process...that it's just not going to go according to your ordinary disease, i.e., it doesn't go according to what we normally experience with most illnesses. One good quote: “The really interesting question,” Dr. Tlsty said, “is not so much why do we get cancer as why don’t we get cancer?”
October 28, 2009 3:03 PM | Reply | Permalink
Nice to see your backfill commenting on my blog AA. I try to keep an eye on my blog for new responses to posts that have fallen off of the front page.
I progress each day. Today PT came by later than usual, and there was only 1 hr left on their shift. They still helped me work out my legs a bit, and then helped me into a wheelchair. I pushed myself around in it for almost the whole hour straight, and am tired now, but feel much better psychologically. It is important for me to feel that my condition is improving, and that I will NOT be an invalid the rest of my life. My upper body strength is fine, and my lower body strength increases daily. Mentally, things are well.
Thanks for the NYT link.
October 28, 2009 7:26 PM | Reply | Permalink
Still with me friend? That New York Timews article you linked to was very good. thanks again for the note. Here's two more recent NYT articles which are also germane:
The later listed was difficult for me to read. It's 3:15 AM here and I'm waiting another 15 minutes for when my pain med can be taken again. My left hip hurts, but not as bad as it did a little less than 4 hours ago, when I last asked for pain med. I'm kind of scared right now, worried about my future. I've got a different assigned oncologist (due to the advocacy of my sisters). I'm supposed to meet him later today or tomorrow. I've also got a brand new laptop computer and the full Adobe Master Suite software package freshly delivered and waiting for me to dig in (part of my spend-down process to be eligible for Medicaid), so maybe my web production will begin again in earnest soon.
I hope you're still scanning this post AA. Your replies here have been a cause for hope. i cannot properly express the gratitude i feel for this.
love, pca
October 29, 2009 6:26 AM | Reply | Permalink
the NYT articles are a part of an ongoing series:
Forty Years War
October 29, 2009 6:28 AM | Reply | Permalink
Yes, I'm here, I see your responses on my dashboard. (Since I took Versha Sharma off following, with all her headlines for the site, it lasts a lot longer.)
First I should say from my experience with family members, your description of therapy sounds familiar, standard. When you've been immmobile as long as you have, and in a regular hospital, that's what they start with, one hour in my experience. I don't honestly know whether that's because of allotment of resources or because it's the medically right thing to do, but it's what a lot of other people get at first in my experience. And don't forget, they have a financial incentive to get you out of there, so if that was the only consideration, they'd be pushing you real hard to get you ambulatory enough to be an outpatient. :-)
Congrats on maintaining upper body strength. This female wimp would probably not have done so. And keep in mind that lots of people can't walk after being in a hospital bed for a long time, not just ones who have had spinal surgery.
I'm so glad you found the other article and found them helpful. I am going to note the others you found to send to other people with cancer should the need arise. (I really do think the medical articles of all types in the New York Times science section are of the highest caliber for patient use, they have some really good medical reporters, and it's unfortunate that they don't turn up easily in google searches, that masses of other info. buries them there--people doing research on medical problems, including me, should always remember to do a search of the NYT itself as well, for that reason.)
You seem to think like I do when I've been sick, that a big picture on what all the docs are up to (or what they are supposed to be up to, where they are coming from, what they are trying to do, helps so much. It is crucial to have a little sense of control, as fear of the unknown is the worst thing.
Some doctors hate this, but one thing I strongly believe is that patients always have to have in the top of their mind is that no one can possibly your own body like you do. It follows that you have to "work" when you are really sick and give input and that sucks but you do.
We are not identical machines from an assembly line, what works for a lot of people might still be the wrong thing for some others. Docs who do not want to hear symptoms or listen to reactions to treatments from patients are not good docs, period--it's not about being a caring person, it's about diagnosing and proper treatment, as scientific tests cannot tell them everything they need to know, our bodies are more complex than the science available on them, medicine is a process and an art.
This is where my reaction against a lot of "blame the victim" stuff comes in. Too many people, lots of men of a certain age especially, think that if they just ignore symptoms and "think positive" whatever it is will go away, they train themselves to ignore pain and other symptoms. I think it's just the opposite, you have to pay attention to your body, you have to be real sensitive to it, in order to assist a doctor to give you themost successful treatment. A pro-active patient is the one with the better chances.
Throw in that most medical professionals are stressed for time and that some would rather just treat everyone like they are identical machines and be able to go home at night and you've got a predicament. The squeaky wheels get the grease, the negative ones less than the ones who can manage to be positive, but both more than someone who just takes whatever they are given and gives no input.
Most people get a tremendous sense of relief just when they feel they have gotten a proper diagnosis and can recognize description of symptoms as the ones they are having. You see it in all the internet medical forums, that's what its all about--they have finally found what they are fighting, they have enormous relief, get a sense of being able to beat the thing. Docs that hate this because the patients have made a wrong diagnosis sometimes just don't get it, what people are trying to do is simply train themselves to see all their symptoms, not just say "I feel lousy, make me well."
Now with cancer, with that article, what I found the most interesting thing about it is the part about older people having small cancer on autopsy that wasn't causing them much harm. And we all see evidence in obituaries and in our own circle of people we know that as medicine has made advances in heart disease, a lot more people are living longer and then dying of cancer instead of heart problems.
So it follows that if you have aggressive cancer that is causing you major health problems at a relatively young age, maybe what you shouldn't be expecting is a "cure" like in most other diseases, what you should be expecting is a reversal of growth? That if you are successful, it's going to be more of a maintenance thing, that's what defines success? I know that with someone whose cancer is so advanced that they could die soon (the spouse's family had a tragic one a couple of years ago that was a 20-something,) that they still "nuke" them, take the patient to near death, and them try to bring them back. But otherwise, it seems that feeling good, not feeling sick, is something you are supposed to expect as a cancer patient, and also that you might be a cancer patient for the rest of your life, which might be a long life, too, and one in which you can expect to feel and function reasonably well.
October 29, 2009 9:02 AM | Reply | Permalink
i've gone past the 2 hr therapy programs. usually, after the therapist(s) have exercised my legs, and aided in my sitting in a wheel chair, they ask how kong i want to remain in it. lately, my answer has been 2 hours, although i've sat in a wheelchair for over 3 hr a few times. anything more than 2 hr tends to be painful.
what would be nice, but won't happen under present circumstances at this hospital, is multiple therapy sessions in the same day.
October 30, 2009 4:38 AM | Reply | Permalink
what would be nice, but won't happen under present circumstances at this hospital, is multiple therapy sessions in the same day.
From my tiny sample of experience, what you're getting is what most people get, standard for any inpatient hospital; your report sounds very familiar.
While most of us have read the stories of inpatient hospitals pushing people out the door ASAP, that's not the case with therapy for the seriously debilitated in my experience. Maybe the skimpy scheduling on therapy to get you ambulatory is protocols according to a liability thing, i.e., if they push people too far and they fall down?
Did you think of signaling to the therapists that that's what you would like? You never know, they might be trained not to do more unless you ask for it. The ones that work with the first steps, i.e., just to get the patients sitting up on their own, probably aren't used to the idea of patients wanting more, they are probably used to the idea that the patient is still feeling really lousy and wishes they weren't being joustled around. I got that impression from watching such a session one time, they were excessively chirpy and pleasant, like you do with a fussy baby, trying to sooth the hurts. (Much much sweeter and solicitious than your usual nurse, that's why it struck me.)
I would think if it is the case that for some is that all they do is make the rounds of the sick beds, and not the "real" rehab that is always somewhere else (either a separate lab on hospital grounds or another institution all together,) those must get tired with doing the same thing over and over, maybe welcome someone giving them more input. Though I do recall that in one nonprofit hospital they had an actual auto body in the basement that they got someone to donate so that they could take patients there to to practice getting in and out of a car seat.
October 30, 2009 12:06 PM | Reply | Permalink
There's this thing with our health care system that that anyone with hard experience in it will recognize. It's incredibly specialized and all the providers have their own stuff to do according to the protocols of their job and have their plate full with that and there's rarely anyone in charge of taking care of the whole patient, you or your family have to do that job yourself.
A story of one very simple thing to illustrate. My fully insured aged aunt lived in a pretty nice assisted living facility and was in and out of hospitals as needed. She used a walker and also had to have 24 hour oxygen and had poor vision from macular degeneration but was otherwise pretty with it and independent, actually rather hip (even elitist towards some of her fellow inmates.)
Well, me and my sibs went to visit her once, she walked with us to the door, an aide came to walk with us to assist her, and we noticed that the oxygen tube hung down way too far in front of her walker and it would get tangled and she could trip, and the aide would lift it out of the way when that happened. And we all thought, geez how stoopid, who designed this thing and why didn't someone fix the tube so she wouldn't trip over it, it would be a simple thing, just make a clip or something. All he providers she had, no one ever bothered to so something so simple about that.
She died about 6 mos. later rather quickly from a fall and a broken hip. My brother and I have had the discussion of whether we should have called her son and told him to demand someone fix that tube.
It's crazy, there's no one ever looking at the whole patient and they just sort of accept what other providers do without attempting to fix it so it works for the whole patient.
This is also the case so often with coordination of medications for the elderly--Maggie Mahar just had a guest post on this.
When you have such serious illness that your care requires all kinds of specialities, primary care usually disappears and you have to take on the coordination role yourself. It sucks because you're usually too ill to do it, but that's just the way it is.
You have to speak up if you need something, they are not paying attention to your whole care, they are very busy thinking of their own little area, body part, or protocols. R.N.s used to do this job, but they are stretched thin with the machines and the meds and often just can't. When one does on their own initiative, it is surprising and unusual.
October 30, 2009 12:43 PM | Reply | Permalink
i have been thanking PT every time they come, and telling them how much it means to me. for the first time, they came both saturday and sunday this weekend (the same woman is responsible for this). hopefully, i've put it on their minds just how important therapy sessions are to me.
today i actually took a few steps for the first time since back surgery. sure, i had a bit of support help, and was using my arms on the walker, but i still took about six steps, and it felt good. if i keep improving, i can visualise myself moving around using the walker without aid very soon, maybe even this week, although that may be a bit optimistic.
November 1, 2009 8:22 PM | Reply | Permalink
Glad to hear that there is good progress happening.
November 1, 2009 8:51 PM | Reply | Permalink
thanks for noticing on this backwater post, lulu. i keep working hard during therapy session, ignoring as much pain as possible (i ask for meds too, when it gets intense), and i still am progressing noticeably everyday.
November 2, 2009 10:33 AM | Reply | Permalink
i have been thanking PT every time they come, and telling them how much it means to me. for the first time, they came both saturday and sunday this weekend (the same woman is responsible for this). hopefully, i've put it on their minds just how important therapy sessions are to me.
Certainly sounds like the type of patient I would give a little extra time to if I were a pt and could scrounge a little extra time. In a way, it's an example of some of the stuff I've been ranting about on this thread--i.e., it's not fair that providers might not put as much effort into you if you happen to be cranky and negative because you feel lousy and/or depressed, just as it's not fair if docs spend more time on or might even do a better job for more informed and/or more educated patients, but it's just human nature and its partly the life's not fair thing. Maybe we expect much more from healthcare givers than other humans and that may be a fantasy sometimes gleaned from literature and movies and such.
was using my arms on the walker, but i still took about six steps, and it felt good
yay! way to go! (not intended as fake chirpy pt talk either, honestly, sounds pretty above average for someone as debilitated as you have been.) I am thinking your surgeon(s) might be surprised by that?
November 1, 2009 9:04 PM | Reply | Permalink
it might not be fair from all perspectives, but i started on the same footing as patients that turn out to be cranky and/or unresponsive to therapy, and have worked very hard at improving my condition, and not getting stuck flat on my back in bed. i fight pain and discomfort to do this, and always let the therapists know that i do not hold them responsible in any way for this. they are all very nice and caring individuals; this is not an exaggeration; as i've yet to meet one of the PT staff who seems to be just doing the minimum required for their job. i want them to feel rewarded by my improvement, just as i feel rewarded by their helping me to improve. it's a two way street. for this maybe i get a little bit of special treatment from them, but anybody could do the same as i have done, and am doing.
the way i look at it presently is that the quickest route to obtaining the chemotherapy i need is to become physically able to move my body around without the aid of another person. i want to walk again, but if this means i'm ambulatory in a wheelchair, so be it. i don't have time to fret about the cards dealt to me in this hand.
thanks for staying with me on this thread ArtAppraiser. Some of your observations have been very helpful, and just knowing you're actively engaged with me is a very positive force for me.
November 2, 2009 10:50 AM | Reply | Permalink
Sounds like a plan, and a good one. :-) I think everyone experiencing our health care system up close and personal would benefit to think about it from the caregivers P.O.V., whatever that might be and the influences on that good and bad. And while you will always run into some jerks or burnt out caregivers, you can usually get a good rise out of most of them by giving them a chance to do what most of them went into it for: helping people get well. You have an extra incentive to be a better patient this way than others: you haven't got insurance now and you will be probably be a Medicaid patient in the future, so you don't have the luxury of looking like someone who isn't ready for the rigors of chemo , etc. that an insured patient might have.
They do "triage" by attitude even with the fully insured, I personally know they do. Example: a heart surgeon will offer a risky operation to a 70-something if they think that they have a strong will to go through what it's going to take, but they won't even mention it as an option to someone of that age if they think the person has given up.
November 2, 2009 11:13 AM | Reply | Permalink
P.S. to my above, not doing as a reply because the thread is getting skinny.
When I said earlier several times the aqueaky wheel gets the grease, now we're really getting at what I meant here. One can't just sit and be sick in this system and expect Florence Nightingale to come give you exactly what you need, it's not set up that way.
The thing is that there are so many treatments and options and specializations in our high tech medical world that triage or rationing if you want to call it that, it's done all the time, it's done in the head of every doctor. And it's not always about money, it really isn't. It's true that if you have lots of money and can pay out of pocket, you can demand all kinds of things, but even then you STILL might not get the right thing or the best thing for you. It's all about knowledge, and attitude, and potential.
You know, you might end up having more options than someone inside the policy of an all-controlling insurance company, even on Medicaid. Depends of course on how Medicaid in Nevada is structured, whether fee-for-service, or with teaching institutions. But you and your family will still have to drive the train. That's the thing that frustrates me about our system, I've seen that, been there, done it, it's incredibly stressful--at the same time you're going through this horror with health, you have to be in another fight, too, you have to be acting like a primary care doctor for yourself. For most people, it would be better that they have a trusted practitioner that knows them and their history doing that. But you know, in a case like yours, where there are trials and experimental treatments, it might be that the system as it is might be better for you--precisely because you know your own body better than anyone else and you and your family have the intelligence and education to go after what might do you good.
November 2, 2009 11:35 AM | Reply | Permalink
P.P.S. Re: Gina Kolata, "A Place Where Cancer Is the Norm", New York Times, October 24, 2009
The later listed was difficult for me to read.
I just read it through.
The beginning of the article is trying to get across the hell people go through like you are going through now, for the benefit of readers who haven't had to do it themselves or haven't had close family experience.
But if you did not read it all the way through, go back and read the story of Dr. Raber on page 4 to the end of page 5. Having gone through recurring cancer(s) himself, he gets it, he really gets it, especially when he says at the end: “My life was very different than it was before that day in the CT scanner,” Dr. Raber said. “It’s not the life I thought I would have. But my life is still really good. “My son is fond of saying, ‘It is what it is.’ That’s true. This is my life. I enjoy it a lot. It works out well for me.”
Best to keep in mind the old saw "nothing to fear but fear itself." People used to tell my Mom they felt sorry for her having to get dialysis and would say "I don't know if I could do it." She would say back to them, "well what choice do I have!?" like they were being silly to say that. You've been dealt a bad card, but you and your family are going to deal with it, it's part of your life now, you don't have a choice. If you get all wrapped up in fear and despair too often it's just a waste of precious time that you could use doing something you like to do. After all with the new bad hand you've been dealt you're going to be spending a big portion of time on health, leaves less time for everything else.
October 29, 2009 3:11 PM | Reply | Permalink
P.S. re: I've got a different assigned oncologist (due to the advocacy of my sisters). I'm supposed to meet him later today or tomorrow.
I know how nervewracking this is, it is worse than starting a new job, as your life depends on it. Wishing you the best of luck, that you and he click reasonably well.
Also, looking at my long screed here, "medicine accoring to artappraiser," hah, I might as well add a political statement. You are a poster boy for very particular reforms. It's in the best interest of all of us in this country that we get the frigging Medicaid system to function better than the state-by-state mess that it is. The currently insured are subsidizing your hospitalization, and when you get out they should want you to be able to stay out, by having a good regular maintenance care, and with some continuity, not having new providers all the time having to learn your case allover again. And that does not mean doctors who are paid almost like they are doing it pro-bono, either with too many patients to serve any well or squeezing you in inbetween well-paying patients. It is the same like with any chronic condition, like diabetes--we are penny wise and pound foolish on the Medicaid front.
October 29, 2009 9:50 AM | Reply | Permalink
"poster boy" - that's exactly the term I used to PCA in a recent email.
Glad to see your assistance here. :-)
October 29, 2009 10:20 AM | Reply | Permalink
PCA, my heart is with you - as you know. I have sent out a plea to the one person I know who has abundant experience with helping a family member through medical mazes dealing with this malady that's come upon you. I expect she will either post here or I will be in touch via direct email, once I hear from her. (Or she can pass it along herself, assuming that's ok on your end.)
Bless you for turning to your friends. I know how important independence is to you. And this is the quickest way in that direction!
Yours is the perfect example of why we need healthcare for all! I hope your story is read far and wide.
Peace to you. And all.
October 29, 2009 10:19 AM | Reply | Permalink
In case anyone did not mention it yet, articles in the local paper may make a huge difference. If any friend or family member can get press exposure, you may find solutions piling up very quickly!
October 29, 2009 10:23 AM | Reply | Permalink
still with me here AA?
you might find the last part of this comment, and the whole blog post interesting; although the concept that Warhol's art was capitalised, and therefore possibly co-opted is not brand new thinking. i liked Warhol, and believe some of his works were extremely relevant pieces of art within the context of their creation time.
the old question of mine is:
does contemporary art reflect the society in which it was created
or
does society reflect its contemporary art?
my best guess is it's quite a bit of both.
November 4, 2009 9:45 PM | Reply | Permalink
Still with ya, if a bit belated, as I missed this one until I checked back for new stuff.
I don't really agree with the interpretation there on Warhol. I think this 1975 quote by Warhol himself gets at the gist of his main body of work best concerning that whole topic:
As to contemporary art and society, short version with huge distorting generalizations: I believe that in western civilization, avant-garde art has a situation starting in the 20th century that is unique to history. It's there to challenge the prevailing status quo, but contrary to art that challenged the status quo in the past, where artists had to suffer for doing that, it's well supported and encouraged by a large segment of the status quo. Some would say co-opted. I don't, rather I think it means that the "freedom of speech" concept has sunk deeply into our civilization, as well as more complex ideas about individual freedom. That so many of us so highly prize individual freedom is actually what bothers many other cultures about us.
That is intimately tied to capitalism, because artists were freed from having to have patrons with the rise of the middle class in the 19th century. While many of the lefty postmodernists did a now classic rant on that, tying the narrative pictures produced to sell to the rising middle class to the Hollywood narrative...narrative, narrative, narrative keeps us enslaved blah blah blah, I don't see it that way, I think that freedom from having to have a Uffizzi or a Vatican (or a Chinese emporer, for that matter) commission their work, not to have to be employed by someone, is the cause of artists being able to make work that is not beautiful, to be released from being only craftsmen or aesthetes. Abstract art, conceptual art, etc., couldn't have happened without that. Actually, I think the whole concept for visual art of "fine art" being something different from craft or production of beautiful things is due to the spread capitalism. Yes, it's very ironic--capitalists will pay to be criticized by "high" artists.
By the way, since you like both Lou Reed and Warhol, if you don't know about "Songs for Drella," Reed and John Cale's tribute to Warhol, you should check it out, find and read the lyrics, maybe download the album.
November 7, 2009 3:52 AM | Reply | Permalink
thanks, AA; a nice analysis, and very germane quote of Warhol's. That was enlightening. I hadn't ever contemplated that capitalism had itself contributed to artist independence, because it decreased their need for patronage, yet it seems self-evident once doing so.
I have now reached a point that i can honestly say i am walking again. It comes with a couple of caveats though. I use a walker for support, and I still need a light aid to move from sitting on the bed to standing in the walker. Also, i'm certainly not about to win any walking marathons, but i can manage 40-60 steps before the weakness and fatigue bite back. Fine motor control over my legs and back are slowly returning too. Yesterday, i walked too far in one session, and am still paying for it now. I must keep my impatience at bay, and not let myself get depressed during this slow, plodding recovery process. Part of me thinks how easy it would be to just lie down, and give up, but the rest of me gets angry at the thought. I've got to continue pressing forward; yet need to temper myself, so that i do not attempt more than i'm physically capable of accomplishing at this time.
Still no chemotherapy; no real expressed plan about when/how i'll be able to get it started up, and it is a necessary part of my recuperating. It's a matter of pay source. Until medicaid gets authorised, there is almost nil chance of my getting it, since this county does not have its own oncology program, and uses private third-party providers instead. No private group or rehab facility is going to be willing to simply shoulder the costs associated with my chemotherapy, and they should not be expected to do so. I seem to be left with an option of seeking out joining some randomised study, hoping i toss the right die, and get the most effective treatment from it.
Visions of guinea pigs and Russian roulette dance in my head, amidst an unshakable impression that I am lost at sea. I would be in a real world of hurt, if it weren't for my sisters. I cannot deal with bureaucratic red-tape, and hoop jumping. I do not understand the need to play silly games just so i can get medicaid authorised. I am disabled, there is no denying it, no matter how distasteful i find the concept. I have no health insurance, nor do I possess the means to pay for my own care here. What more should be needed in order to qualify for Medicaid assistance?
November 8, 2009 3:42 AM | Reply | Permalink
I'm no expert but the fine motor control coming back sounds like a big success to me, one that might not have happened. Also your "go for the burn" type reactions sound to me like growing new nerve cells?
Medicaid is a mess period. I don't know about Nevada but I tried to figure out the rules for it in Wisconsin and after about a day of reasearch I gave up. I found they actually send out like daily emails to the social workers interpreting the regulations for them, the income formulas seemed to require an advanced math degree, and intepretation changes all the time, in the end it seemed like just serendipity who gets it, if the person who is trying to get it for you has power, they get it done. But I have read stories of it taking an interminable amount of time, same with like food stamp assistance.
But I firmly believe you will eventually get it because you and your family are smart and educated, that's the way our system is, those without savvy are the ones falling through the cracks. You'll figure it out, I have confidence. Yes, the wait might be harmful for you, and that sucks. On the other hand, maybe it turns out better that you are more rehabilitated before starting chemo, you never know?
November 8, 2009 9:15 AM | Reply | Permalink
Unfortunately I have nothing to add but words of encouragement PCA. I am in the same insurance boat as you, no insurance and in my case I'm a type 2 Diabetic, and my worst nightmare is becoming seriously ill like you are...which will probably happen at some point. When the disease I have does get the best of me, if I am 'lucky', I'll just drop dead and it'll be over quick instead of having to get lower limbs cut off or worse.
Keep on battling my friend. It sounds like you are in a world on pain physically and emotionally. I am not a religious person per se but I am spiritual. I will say a prayer for you just in case someone is there to hear it. Get well soon...
November 5, 2009 12:28 AM | Reply | Permalink
Psuedo,
How are things? All good, I hope.
There is a holiday coming up and I will be traveling to CA by way of Las Vegas and passing through either Tuesday or Wednesday before Thanksgiving Day then back through sometime the following week.
If there is anything I could do or bring to you I would be happy to do it. We have a pretty big used book store in town and I have a couple in hand that might interest you. Maybe a cheeseburger? Hell, I don't know, maybe a pint of pain medicine. Cookies?
I have a seldom used e-mail account at bobfull53at yahoo.com where you can respond if you like. The "at" is "@" of coarse. I've been told to give it out this way to keep it from being picked up by scanning programs.
Hope to hear from you.
Cheers, Bob.
November 18, 2009 10:02 PM | Reply | Permalink