Talk about unsettling…

This morning during pre-surgical testing and pre-admission paperwork (surgery scheduled for 7/28), I was asked about tissue repository.   What they want is any discarded tissue (if any) that is leftover from surgery.

Basically, it means that the hospital can use any leftover tissue removed during surgery for research and testing.

At first I was “Sure, if it can help further research.”  But then I read the fine print…and the even finer print…

Whoa….back up….what sounds so “altruistic” has a very dark side…

–> While they will do everything they can to protect your personal information it is possible that it could be released by accident.  What they use as example is a researcher using your tissue also is granted access to your medical record to determine other factors and they compromise your data.  They can also sell your tissue or give it away.  Once your tissue/information is sold they (the hospital) is no longer responsible for your privacy and the use of the information.

–> Only 1/2 of the stored tissue will be used by hospital researchers – the rest can be sold off/given away.  This means that some of your medical data can also be sold off to accompany your tissue.  Examples given – dna testing, genetic coding, cell identification, cell manipulation.  (no results of testing/research will be reported to you or your doctor – not even if they find something that you/doctor should be aware)

–> Buyers of your tissue can include insurance companies.

–> Others can make money from your cells/tissue but you will never be compensated even if your cells prove to be key to curing some disease.

–> Researchers (in house and buyers of tissue) can be given your contact information should any questions arise in the course of their research and they need to contact you.

–> Access to your tissue/personal medical record (including doctors, procedures, past and current medical issues, medications, dr notes,  will be granted to (but not limited to) docs, pathologists, nurses, data administrators, statisticians, researcher personnel, secretaries and others who may not be currently identified).

–> Risks involved in donating tissue can include future denial of insurance, denial or loss of employment, changes in social standing, problems in family relations and other unknown future uses of your genetic information that have not been currently identified.

–> They can keep your tissue indefinitely and can use any means available to replicate/manipulate your tissue.

WHAT?!

My initial “sure” was quickly followed by a “NO WAY”.

Has anyone here agreed to donating their tissue?  Are you worried about your rights to privacy and/or reprecussions?  If we want to find a cure for disease, should we all be willing to donate our discarded tissue?

What are your thoughts on this subject?

Go suck hairy donkey balls…

 

I met with surgeon today regarding the hernia repair.  Because of the two previous surgeries and the scar tissue involved, he says that laproscopic surgery is not a viable option.  The repair will be open surgery.

I’ve been running a low grade fever for a couple weeks and my blood levels aren’t where they should be.  I know the TPN is risky because of infection and I know that my body isn’t in the best condition to fight a major infection.  I’ve been told that continuing TPN is the same as playing Russian Roulette.

Inserting the j-tube is open surgery.

I do not want to have open surgery even one more time….so I certainly don’t want to find myself needing it twice…my primary doc isn’t sure where to go next for treatment (he’s waiting for inspiration)…so, I am reluctantly making the only logical choice at this time.  I am going to allow the surgeon to insert a j-tube when he does the hernia repair.

I had hoped making the decision would somehow make it easier to accept.  It doesn’t.  I cried most of the drive home.  I feel like I am giving up on ever returning to normal.

Surgery is scheduled July 28th.  I will be in hospital for a couple of days then home to “recover”.

To rub salt in the wound, the surgeon’s nurse told me that the surgeon wants me to have the bowel cleansing prep the day before surgery.  LIKE DUH YOU MORON – if I could drink a gallon of any liquid do you think I would be needing the damn j-tube?  I really had to bite my tongue to keep from ranting foulness.  I really hate it when the medical profession treats everyone like a procedure.

I am so angry tonight…I know the anger is misplaced but I just want to scream at the world and tell everyone to go suck hairy donkey balls.

I don’t want a stinking tube stitched to my skin hanging out of my abdomen and seeping ooze.  I want someone to help me figure out how to eliminate the esophageal spasms so I can drink fluids.  If I could drink fluids, I could drink nutrition shakes and wouldn’t need TPN or the blasted j-tube.

If this is the right thing to do, why does it feel like I am giving up?

Just added new page to blog…

Check out new page to blog…”How to Help”  I wanna draw your attention to it because I am soon going to be adding link to the high quality winter accessories I make and sell.  Remember, you only have 165 shopping days until Christmas!

Just venting….

A question was recently posed to me asking “What was the latest thing you heard or read which shook you, rattled you or rocked you?”

I have to say that other than finding out about Santa Claus when I was 8…I really hadn’t been rocked by much until I heard the word “cancer”.   Okay, I admit “You’re Pregnant” was a little earth moving in a positive way.

Since “cancer” I admit to being regularly amazed at how little docs know (or to be more fair – how much about the human body they still don’t understand) and how most docs want to resort to band-aid approaches first. So many are geared to address the symptoms rather than the cause.   To hear from others that they experience similar medical challenges helps (misery loves company) but it certainly doesn’t inspire hope.

But really rocking my boat…

–>Being told I DON’T make enough to get assistance with my cobra payment floored me.

–>Being told I make $23 too much on SSDI to qualify for food assistance floored me.

–>Being told that Sallie Mae will most likely garnish 1/4 – 1/3 of my SSDI floors me.

–>Being told that Medicaid will not cover my TPN or j-tube feedings so I need to keep private insurance to stay alive floors me.

–>Being told by my doc today that he is waiting for divine inspiration as far as next treatment steps/treatment plan…as of today he has nothing.  (I still think he’s a great doc but I really hate to hear he’s stumped.)

As for the hernia, I have two choices…get it fixed now (surgery) or live with it unless it causes complications.  Since it feels like I have a rock-hard tennis ball sitting just above my naval (very uncomfortable), I think I am going to have to choose “get it fixed”.  I meet with the surgeon tomorrow to discuss surgery.  I am really hoping that laproscopic surgery is option – I do not wish to face another open abdominal surgery.

Blah….now I feel the need to go kick a tree or stomp on a flower….yeah, I’m bad…so bad…don’t mess with me.

I wanna kick Ashton Kutcher’s ass…

A few weeks back I started noticing a discomfort when I was walking.  It progressed until I started to feel a knot just below my breastbone.  Then I started noticing that the knot was present more and more frequently and causing more discomfort.

When I saw my doc, it was about the size of ping pong ball.  Doc said it was a hernia.  Most likely it has formed because of the abdominal surgery in January.  Guess the abdominal muscles don’t always stay closed and it’s not that uncommon.

In the last two weeks, it has continued to increase in size and now feels like a tennis ball just under my skin.  I can feel it even while sitting and I think it is going to need to be addressed sooner rather than later.

My home care nurse was concerned about it this morning.  She made a comment along the line that I don’t need another item on my plate.  It was then that I realized what the feelings I have been experiencing regarding this hernia is ANGER.  I don’t NEED this.  I got enough on my plate without worrying about my intestines pushing out my abdomen.  My blood levels are not responding to the three iron infusions as much as they should, I am still no closer to being able to eat/drink, I vomit bile daily, nausea is my constant companion and my friggen back is killing me.

The hernia is probably from all the vomiting that I experience daily.  Surgery probably weakened the muscles and the constant pressure of vomiting pushed relentlessly on these muscles.

Today I attended physical therapy to address my back spasms.  It was too painful for them to do anything more than a little electrical stimulation and heat packs.  They want me back three times a week but with the high co-pay and my fixed income, I am going to be lucky if I can even swing once a week.  Until I return next week, the therapist gave me instructions to continue doing the same two exercises I have been doing plus one additional exercise.  Unfortunately the exercises aggrevate the hernia.  Damned if I do, damned if I don’t.

The fix for the hernia is surgery.

Where is Ashton Kutchner and when is he going to jump out and yell “You’ve been Punked” because this joke has gone on too long…I am going to kick his ass.

Cheetos and Beer

As you know by now, I can’t eat very much and get 90% of my nutrition from iv nutrition.  I can’t drink any fluids without vomiting immediately.  They want to keep my intestinal track functioning and so I am encouraged to eat as often as possible.  This usually means I manage 2-4 bites every 3-4 hours.  Depending on what I attempt to eat – it can sit like an uncomfortable rock or I can vomit it back up.  The dietitian has pushed for protein items but meat is very very challenging for me to digest.  One home care nurse suggested that I simply eat whatever sounded/tasted good and I could keep down – I like her plan more.

One of the few things I can keep down are puffed cheetos and even then it can be only a couple of them.   Sunflower seeds are good because it takes forever to remove the seeds from the shell and the amount actually consumed is very small.  Love the salt taste.  Fried pork rinds work but ewwww….they are nasty if they don’t stay down.

I figure that when I get back to eating “normally” and can drink fluids again, I will worry about a balanced diet — for now, I am just content when I can eat a few bites without vomiting.

As for the beer…since it doesn’t go down too far and comes right back up it doesn’t lose it’s taste.  I KNOW how gross that sounds but when you are simply craving something to drink and you know you are going to vomit it – it might as well be enjoyable.  Besides, with the quick absorbing intestines enough seems to pass through to give me a little buzz although it is very very short lived (I actually think it is more like a blood sugar spike but feels similar to a buzz).  I’ve tried wine and it was awful.  I shudder at the thought of anything stronger.  But beer…it’s okay.  Obviously it is not really that enjoyable so it is not something that will become habit forming but it makes me feel “normal” in a twisted sort of way.

So this evening….beer and cheetos.  It was almost like being 18 again.

No further trips to Mayo Clinic

My primary care doc (excellent individual by the way) called the GI doc I saw at the Mayo Clinic to review my case before I make the long/expensive trip back up there next week to “consult” with a surgeon.

He confirmed my suspicions …Mayo Clinic docs were going to concentrate on talking me into getting the j-tube rather than exploring any further options to resolve my current issues.

My doc assured me that he will continue to explore additional treatment options.  In the meantime, he does not feel that it is critical that I get the j-tube placed immediately.  I know, should any signs of infection surface, it will be in my best interest to replace the TPN with the j-tube ASAP.  I admit that I am thrilled by this temporary reprieve.

Meanwhile, my iron/blood levels have improved slightly.  Unfortunately not as much as the doc would like.  I am not sure if that means another iron infusion (that would be #4).  My blood labs are checked weekly so any problems will be caught early enough to avoid any problems.   It will be nice to get this resolved so I have a little more energy and not feel quite so fatigued all the time.

My previous funk has lifted (as I knew it would) and I am back to viewing my current “issues” as temporary inconveniences in the grand scheme of life.  I am still convinced that, in the not too distant future, these issues will become quickly fading memories.

My only complaint on this beautiful summer day is the obnoxious back spasms that have been plaguing me since last week.   A short regiment of prednisone provided a slight lull but that lull is now over.  I never knew that the muscles that enable one to blink are attached to the back muscles…at least they appear to be because it hurts to even blink.  I start physical therapy on Tuesday and I anticipate some relief in the coming week.  I am going to take advantage of this downtime and sit on my rear reading with the heating pad.  It’s a great excuse not to do a lot of boring housework!