Monday, March 10, 2014

Elephant In The Room

"Elephant in the room" is an English metaphorical idiom for an obvious truth that is either being ignored or going unaddressed.  The idiomatic expression also applies to an obvious problem or risk no one wants to discuss.  It is based on the idea that an elephant in a room would be impossible to overlook; thus, people in the room who pretend the elephant is not there have chosen to avoid dealing with the looming big issue.  (Wikipedia)

With the elephant in the room being something obvious, let's change this up a little bit and talk about the "mouse in the house".  For the sake of symbolism, the mouse will be something a little less obvious and more difficult to see.  Mouse being two copies of a gene mutation.  You may not see the mouse, but that doesn't mean you don't see evidence from the mouse, like traces of mouse poop, or mouse urine, or something having been nibbled on.  You can choose to ignore doing something about the mouse, but that won't stop the damage the mouse does.

Now, about that gene mutation... I pushed and begged and pleaded for the team to try to get to the root cause of the issues Michael was and is still having.  I begged from the very beginning, back in February of 2013.  Finally, in October, at our insistence, they did more testing and then neglected to mention the results until he was back in the hospital waiting for a heart transplant.  My big question and concern was, if they didn't get to the cause, what would keep the same thing from happening to the new heart?  Two doctors actually had the nerve to tell me, "Look at it this way, it took him 41 years to get in this shape, so maybe it will take him 41 years to do it again."  Seriously?  After everything that happened to him in 1 year, two clotted LVADs, several balloon pumps and countless procedures, you could look at me with a straight face and say that?  While you may not want to directly, or proactively address this issue, we aren't too ignorant to see that you are having to address it indirectly, according to lab results.

Another really hard thing to deal with is, I've been searching and researching for over 30 years to try to find an answer for my health issues, as well as a common thread shared by my family and wasn't successful.  It took nearly losing my Son to find something.  To know that I passed him at least one of those defective genes is very hard to come to terms with.  To know that my other children and grandchildren may also have a defective copy is even harder to deal with.  I also can't help wondering if finding this sooner could have prevented, or at least lessened the severity of what happened.  Until someone with the intelligence to explain how it didn't play a huge part in what happened, I will continue to believe it did!

Rant over.

Most of you that have your email enabled have been updated on Michael.  For those that don't have email enabled, this is where he stands... on Thursday, February 27th, he went to the hospital for his third biopsy.  At that time he couldn't walk more than a few feet, due to intense foot pain.  He was admitted to the hospital, they ran some tests to try to find out what was going on.  During the stay, they did an MRI on his back, which he had broken 11 years ago and found more issues than he was aware of, including an 8mm lesion on his spine.  On Monday, March 3rd, he was released, with more drugs added to his already toxic drug cocktail.  The drugs have allowed him more ability to walk, but his blood pressure has gotten way too high.  On Wednesday, March 5th, he finally called the coordinator to report it and they discontinued two drugs they suspected were contributing and added yet another one.  Thursday, March 6th
, he went to Clinic for labs and didn't say anything to them about the still elevated blood pressure, wanted to give it a few more days to settle down and I suspect he didn't want to give them a reason to admit him.  He finally had a decent pressure Sunday morning, but by evening his Sister said it was up again.  He goes for his fourth biopsy on Thursday, March 13th.

If you made it this far, your eyes are probably crossed from reading.  Sorry it was so long and thanks for hanging in there!  If it makes you feel any better, my eyes are crossed, too!  Consider yourself lucky I don't do this very often.  

32 comments:

Cindy @ Dwellings-The Heart of Your Home said...

I can't imagine going through all you...your family...Michael...has gone through! You are so right, it seems the "root" of the problem often isn't looked for when there are a trillion medications they can "try" and use to mask the problem. Praying for you all and so hope they will find the issue so it won't damage the new heart, etc...
Blessings,
Cindy

Ami said...

I know there isn't a thing I can say that will help you with the frustration and aggravation of not being listened to by medical people. It's one of the things they're best at.

I so hope that they can get things under control.

(((hugs)))

Karen said...

Do not ever blame yourself for things that were not in your control, ever! How could you possibly know about passing things down that you were not aware of! You did not have the information then that you have now.. And.. I doubt your family who is here today because of you would want you to have made any decisions any differently. If I understood you correctly :-)

Your diligence in getting to the root of the problem is so important, good for you for being a voice that needs to be heard.. we have to be our own advocates, I've learned that through our own ordeal.

TexWisGirl said...

no, i've been wondering how he has been doing! i think of him (and you) often. didn't want to ask. figured we'd get an update when you were ready.

i'm sorry the issues keep coming. and you cannot blame yourself. you didn't cause any of this. and you have tried very hard to press the medical personnel for causes and answers. bless you...

Furry Bottoms said...

As you already know, I have the same gene mutation. The Dr does not seem to be overly concerned about what harm it can do to me right now. I have an appointment to see her next week, and then we go from there. Perhaps being on warfarin is what is making a difference for me at this time. I guess I'll find out next week. I am glad Michael continues to hold out, albeit the ups and downs with it. Hang in there!!

Betty Manousos said...

praying for Michael, and so hope they will find the issue...
please stop torturing yourself, you cannot blame yourself for things that were not in your control.

still can't even imagine what Michael, you and your family have been going through...
i'm thinking of him and you and continue praying.

(((hugs)))

Saraheinä said...

Thank you for this update. You are in my thoughts often. Hang in there <3!

Deborah said...

I agree that this is definitely not your fault and should never be looked at as such.

But I love that you are sussing out the root. The damn reason for all of this because with knowing is always the possibility of finding a solution. I believe this with my whole heart.

. . . and damn the doctors that roll their f-ing eyes when we question them and damn them for their arrogance and damn them for their sometimes reluctance to think creatively. I'm not a doctor-hater, but please, let's use our thinking MDs.

bloop

Sally said...

I started to say I can't believe the way that doctor spoke to you, but unfortunately I can because of my experience with my brother. And, Karen is right, we have to be our own advocates nowadays unfortunately.

No, we cannot blame ourselves for something that we knew nothing about; however, I admire your research and wanting to know as much as you can.

Prayers continue for all of you.
xoxo

ancient one said...

Hugs for you and Michael...

Gigi said...

Oh sweetie! Sending hugs and prayers.

And, no. This is not your fault. But good for your for being his advocate.

mama .bonnie said...

OH my what a wild trip you and your family has been on!!! Thoughts and prayers are still with you and your family and hoping that with spring, things get more even kilt for all of you.

Vicki Lane said...

I hate it that Michael is going through this additional trial. And that you feel somehow that any of it is your fault. NO! It's not. You are a warrior for Michael. Stay strong. xox~Vicki

lotta joy said...

As you know, my sister is dying, but spends every day feeling so bad she wishes it was today. She just got back from Cleveland Clinic. No. They can't do anything about the disease that is taking her, but one reason she was feeling SO bad was a medication she was on.

Within 12 hours she was feeling better! Just like your situation, she kept telling her specialists how horrible she felt, but no one listened to her and just said "What do you expect? You're dying!"

Compassion is not necessary for a doctor degree.

Chatty Crone said...

Look we do the best we can for our children - we load them with genes and personalities and that is life. No one could have prevented this. I know you must seem so over whelmed.
Am I reading this right - he is having more issues NOW? That is this Feb. and March? What is going on? sandie

Barbara Shallue said...

As a mother, I know it has to be excruciating standing by as your son goes through this. I know I've told you before, but you are all in my prayers. I'm actually surprised they went through with the transplant, though, without knowing the cause. A friend's daughter is up for a cornea transplant, but they wouldn't do it until they knew what caused the problem in the first place.

George said...

Words can't begin to express what we feel reading all that Michael (and the rest of you) have been through and continue to face. Just be assured that all of you remain in our prayers.

Betsy Adams said...

My heart is heavy for YOU and Michael and the family. You truly can't blame yourself though. Doctors say they do the best they can--and some do. However, most of them just deal with the problem at hand and not the 'root' of the problem. It is such a shame that you have to deal with this now --and that doctors didn't find out more many years ago --long before Michael had to go through all that he has. I know it just breaks your heart--but we are all human (even doctors) --and life just gives us many heartaches to go along with the blessings. God Bless YOU Cora --and your family. I hope and pray that Michael will be able to get better --and live a long, productive life...

Prayers and many HUGS,
Betsy

Susan Payton said...

I read your profile and gee it sound like me. I have been for a long while trying to find the key to not worrying about grown children. Is it just me or does it seem the grown children always have a problem. Anyway, I enjoyed your page and am so glad to see you here blogging. A lot of deserted blogs these days.
Thanks for letting me visit.
Susan
http://amazingcouponanddiscountdeals.blogspot.com
http://cholesterolfreerecipes.blogspot.com

Alexandra said...

Ms. A, I still can't believe how much of a rollercoaster this has been. My prayers for you during this time. I can't imagine and I wish I were closer, just so I could sit and listen to you in person. This is unimaginable... I am truly heartbroken over all these events. xo

Ms. G said...

Hope all went well today. As always you are all in my thoughts and prayers. And no use crying over 'spilt genes' hon. It certainly is nothing you should feel guilt about. We all live with what we are dealt one way or another and learn as we go. You never know how finding this Now could be the answer to saving another person someday. In your own family or one of your readers. : )

Terri @ Backward B Ranch said...

Oh I am so sorry that he continues to have problems! I haven't heard news so I was thinking he was doing well. Please don't blame yourself- this isn't something you did to him. I will keep your family in my thoughts and prayers.

Lynn Proctor said...

i have been there--so sorry you are there--much thoughts and prayers coming your way

troutbirder said...

Its the not knowing that makes the hard even harder. I lost my best friend recently but we knew the odds on pancreatic were very bad. But knowing in Michaels case all the unknown makes it seem unbearable...... Our prayers for him and you and yours...

Betty said...

Here I was assuming all was OK. I'm hoping the biopsy went well yesterday and the changes made to his medication are now working well. It's heartbreaking (no pun intended)...Michael deserves a break. He's been through so much. It doesn't seem fair, but it's not your fault. Sometimes I get so mad when I think about someone like Charles Manson. A monster who will probably live to a ripe old age and then peacefully die in his sleep while others go through hell and back to stay alive. Life sure isn't fair. My prayers are with you all.

Linda said...

Bless you dear! While reading your postI thought MTHFR and searched for it in your blog and yes, that's it. I only have one copy of the mutation, which is common and less serious. Had the 23andMe test and will discuss with my doctor.

We discussed the possibility at my last visit and he said to take folinic acid instead of folic acid so I'm doing that. I've been trying to get a handle on the whole thing by reading articles (Dr. Ben Lynch for instance), but it's complex for a layperson.

Anyway, it's not your fault. Take care!

CiCi said...

This has been a very long time you have been on the roller coaster ride. I admire your endurance, but what else could you do, you want your son to be well.

Peggy K said...

I don't know how you do it!! Well, I know you do it because he's your son and well...
You and the family are in my prayers daily. And virtual ((hugs)) are sent your way as well!

Liz Mays said...

Only a mom has this kind of strength. I can't even imagine the ups and downs you've all experienced. I will continue to pray!

Rawknrobyn.blogspot.com said...

It sounds so much worse than "exhausting." It's demoralizing, infuriating...I'm so sorry. Doctors don't realize how far an ounce of compassion could go, and how much hurt they cause by saying stupid things like "Look at it this way, he could have 41 more years..." Idiot!

Hang tight to faith, and know that you are well loved and supported. You're also the most loving mom and grandmother anyone could hope for.

Prayers and love,
xoRobyn

Help! Mama Remote... said...

How did I miss this email. I can't believe the doctor said that. How rude and insensitive. I pray they do what's right and you all get the answers you need.

Pat Tillett said...

You don't have a single reason to apologize. Your family has been through so much, for so long. I wish I could do something more for you than just read.

Feel free to rant, rave, unload, or unstress here. This is your world and you have generously invited us in... Listening is the least we an do.