Tuesday, May 27, 2014

57. Post-HSCT Fever, and the Billion Dollar International Award-Winning Hospital I Can See from My House

На брю́хе шёлк, а в брю́хе щёлк.                                                                            All hat and no cattle. Literal: On the belly there is silk, and in the belly - just a click.

Well, as if the fire was not enough, I seem to have some post-HSCT something that made me have a fever that ranged between 100 and 102.9 for many days.  That is 37.77 to 39.39 C.  My initial follow-up visit with my hematologist was on day 3 of that fever, and he sent me over to the hospital ER right away. This is my story of the mystery fever.

First let me say I also contacted Dr. Fedorenko in Moscow about the fever and he said it is not unusual post-HSCT and while it is good to be in hospital on outside chance it might turn to spepis, it is really most likely rather innocuous, a viral thing that will run 7-10 days and then will self-resolve. They don't usually know why or what virus causes it, but it does happen. Probably nothing to worry about, but be safe and stay in hospital on IV antibiotics for 7 days.  That's pretty much all of what he said. I was in touch with him every day.

Recently a new hospital opened just within our view to the east from our hilltop home. We've been watching it rise into our view. and it's really not an eyesore.  It is a beautiful building, a jewel for the community (as it has been called) and a state of the art facility that puts it at the top of California hospitals in many ways.  It is filled with the most updated equipment, the finest patient rooms ever (to which I can fully attest, having just checked out of one), and a place you'd want to visit just to see how beautiful the interior and the grounds truly are.  It is a gem!

It cost over  $1,000,000,000 to build.  That's a Billion+.  The following article tells you more about this truly incredible healing facility:

California's Newest $Billion Dollar Baby - Palomar Hospital West

I'm going to post some photos here so you can see what I mean when I say it is truly gob-smacking gorgeous. I've never been in a hospital this nice. Nor a hospital room that has so many plugs for equipment one can only anticipate is expensive and surely can diagnose any illness known to mankind.

I mean this place is gorgeous!  Look:

And the photo below is of my patient room (or one of the 8 floors of others in the complex).  Not only state of the art (has more plugs for medical equipment than you can imagine), the bed is even air-baffle mattress set to flow air from baffle to baffle in timing to keep me (and others) from getting bedsores. I thought that would keep me awake but in fact it was pretty pleasant and did help the very comfortable mattress be even more pleasant.  The huge picture window with view has a night shade that works from my remote, as does all the lighting and the giant flat screen TV.  There is a wall board onto which all my myriad (many many) available helpers names and shifts/ phone numbers are noted for my convenience and someone was always popping in to see if I needed anything - anything at all.   The bathroom alone was finer than most hotels, and if I tell you I had a full menu from which to make selections and I'd phone down my room service order for each meal.  Wow, huh?

Apart from my lovely tiled large bathroom, which enters from an angle-set door to the left of screen behind the bed, there is also a sink for staff to wash hands before and after visit. Also, because my cause of fever was not determined, they fully gowned-up for each visit to my room.  The chair shown in this room isn't as nice as the full recliner I had in my room, and that sofa you see at the end below my huge picture window (with automatic night shade) is a really comfortable bed for a family member. The pull-curtain gives that person privacy from the constant interruptions in the night of medical staff for testing, monitoring vitals and temp, etc.

So the hospital, which is incidentally an International Award-Winning Architectural Achievement, (you can look it up, or in fact I can link you here to all the awards this building won - there are quite a few).

Awards won by this hospital for architecture, design, state of the art medical facility

New Facility Becomes Only Hospital Project to Receive AIA BIM Award 

Even the construction company won awards for this building (click line)

AND it also won honors in the Medical facilities, as well (click line)

I tell you all of this not only to brag on our new Hospital that I can see from my house, and an drive to in less than 5 minutes.  I tell you this because this hospital cannot perform HSCT for autoimmune illnesses. Hence forcing me to go to Moscow for my HSCT and pay for it myself, out of pocket.

For my fever, however, I am completely covered because this hospital is also a Kaiser-Permanente hospital. They share the space/cost with Palomar Medical.  And I have Kaiser-Permanente.  We have total coverage, no co-pay at all. We have the top of the line insurance, but we couldn't get K-P to approve HSCT for CIDP. They do HSCT every day for a myriad of other diagnoses. Just not for autoimmune yet, in spite of huge evidence over many years that it has a very high cure rate. And in spite of the fact that my maintenance treatment was over $260,000 a year (Drs included) and they paid all of that for 3.5 years - would have gone on until I died of it or the side effects of treatment regimen.

So my fever, fully covered, took me to this fabulous 'hotel' like hospital with room service and every imaginable bit of equipment, staff, testing.

I must have had 90 vials of blood withdrawn over 5 days on promise of a firm diagnosis for the fever. I didn't want to photograph my arms, but here is a variety of colors that are now my entire arms, hands, pretty much:

In addition to myriad blood tests at all hours of every day and night, I also had chest x-ray, whole trunk CT scan and probably other things I can't remember now. I was tested for so many diseases it seems amazing to me.  I learned I am the most healthy person ever and that there are literally hundreds of things I do NOT have. There's comfort in that.

However, nice as my several Drs were, and I like them all, including the 2 from infectious diseases, none of them could tell me what was causing the fever.  I became the mystery patient.  I felt very much like I would have made a great episode for "House", the TV program we used to love to watch.

So, by the 8th day, when my fever began to come down on its own, and stayed down relatively low over a 24 hour period, and Dr. Yee came in to say I could probably finish it out at home if I wanted to get released, and that they still did not know the cause, well, I jumped at the chance to leave the awe-enspiring hospital of the future and just be at our fire-saved home, where I am writing from now, 9th day, with a normal fever for me of 96.8.  Who knew!

Frankly, Dr. Fedorenko knew.  I'd told the hospital Drs that I was in touch with Dr.F. each day and that he said it would self-resolve between 7-10 days, and was a viral thing that is never easy to diagnose but which sometimes causes a fever post-HSCT.

I'm pretty sure the hospital bill, with all that testing, will be upwards of $40,000 range for 5 days. That is what I paid to have HSCT in Moscow by Dr. Fedorenko, a 36-day in-patient stay at a non-state of the art older hospital without perfect rooms, fabulous views, (though I did enjoy my pine and birch trees), and a sometimes difficult to anticipate process without patient handbook.

I just am posting this to make perfectly clear the differences in the USA and European medical model.  For the USA, pharmaceutical company sales and medical equipment sales drive our expenditures for medical care way to the top, above any country per capita spending.  And yet we rank 37th Internationally in healthcare delivery.

I think it's nice having a fabulous hospital, but if I can't get healed there, but can only be offered endless maintenance drugs and ineffective treatments that make me sicker in the longrun, something is terribly wrong with the business model. When the control is in the hands of Big Pharma and medical equipment manufacturors, because they have more money than God now (after years of 47% profit on keeping us all ill enough to need meds) and they can buy legislators (as we know) and can block FDA to the point that a cure for MS, CIDP, etc., etc., etc., that has a proven 85% cure rate is not going to get approval from FDA until perhaps 2024, there is a HUGE problem in our Nation.

In Europe, the point is to cure the patient. Not to make endless profit mining the pharmaceutical value of their illness, like a giant profit farm, disregarding the health and viability of the patient's life, destroying it and that of the families into which the ill person must be accommodated.  They think they are in business to heal. What a novel concept!

It's time for us to all work to change the USA business model. There's nothing wrong with Obamacare - well, there is, but it's minimal and has to do with lack of single-payor organization. But what is wrong with our healthcare delivery system in the USA is HUGE and it's your health and mine, and that of our children and grandkids that should be catching our attention - not how lovely our new hospitals are, or how many new machines they can use to test you.  If they don't intend to heal you, what's the point?

I hope you will become aware of the massive problem we face, and how important it is for us all to vote our way out of this mess, and into something more like the European model, so the cost of healthcare in the USA can come down and the cure rate and our international standing can both go WAY up.

It takes a village! It takes action on all our parts.  I hope this fully illustrates the differences in the beast driving our Nation's (unhealthy) healthcare system and shows you we need to all work together to change it.

Next time it might be you or your child or grandchild who has autoimmune disease. It's horrible! There is a cure. HSCT has been used for more than 35 years. It is not new science. Big Pharma is blocking the passage for use via FDA and meanwhile people are dying. It's murder!

I was fortunate. Fortunate to be the kind of person who, even quite ill, would do the research. I was fortunate to be able to get into a foreign clinic. I was fortunate to have the money to pay for the treatment and to travel to Russia (or several other far-flung European locations). There is one faciltiy doing HSCT for autoimmune disease in the USA - Northwestern University, Chicago, where Dr. Richard Burt is in stage III of trial to get FDA approval. His research is what is being blocked, strung out forever. A drug, no matter how many side effects or how effective it is, can be approved by FDA in as short a period as 18 months.

You know the problem we face. I had to get very ill to learn all of this.  I hope you don't.  Help me to change this. DO NOT VOTE for anyone who takes campaign money from BigPharma. YOU are voting against your best interest if you do. Write your congressmen and tell them you won't and that you want Big Pharma out of GOV decisions and out of the FDA.

YOU have power. I hope you will all use it.  Pass it on. SHARE my blog, please. The more people who understand, the closer we are to being #1 in healthcare with a lower expenditure than we have now. If you want a better healthcare system, get that 47% profit-taking killer, Big Pharma, out of the driver's seat.

Help me!

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