Thursday, April 18, 2013

The Worst Doctors Appt in my Life

Firstly, I want to apologize ahead of time for the long post.  I want to give everyone all of the details of the horrible doctors appointment I had which I couldn't do in a short post.  Not only do I want others to know about my experience because a few have asked, but I also want to make sure that no one else has to go through what I went through with this physician.

So, with that said...

I had the worst doctor's appt I've ever had in my life.  It was my 2nd visit with a new GI doc who supposedly specializes in motility issues.  I have a regular GI doc but I wanted to give her a try since she specializes in dysmotility.  The first appointment went well.  She said she didn't know much about mitochondrial disease and she'd need to study up on it.  She also wanted a copy of all of my records since I've seen multiple GI doctors up to that point and had lots of tests.  So the plan was to get the records to her and come back in a few months.  That's exactly what I did.

However, the second appointment, obviously, didn't go anywhere near as well as the first.  First, she explained to me that my GI problems are not because of my Mitochondrial disease, even though my mito specialist and my geneticist said they are. (ALL of my problems stem from my mito)  She said it is because of my POTS/dysautonomia (which is caused by the mito, btw).  She proceeded to tell me a bunch of other stuff regarding my mito that just wasn't true. I think she looked up the disease that my genetic test showed positive for and decided that's exactly what I have and I must have all of the symptoms of that. (Even though I'm not blind and that's the primary symptom.)  However, my mito specialist and geneticist both said that may be only part of what's causing my mito; that I may have a nuclear mutation that's causing my mito along with the mitochondrial dna mutation that normally causes LHON.  However, no matter what I said, she was right and I was wrong.  There was no way the patient was going to know more than her.

Then she saw that I am on pain meds and it all went way downhill from there (more so than it already was).  She said she couldn't treat me if I'm on pain meds and I'd have to get off of them completely.  My mom told her that wasn't going to happen because of the extreme pain my mito causes all over my body.  She then said "Well, then there's nothing I can do for you."

Why I didn't walk out the door right then and there, I don't know.  I can say that my mom was already up out of her chair getting ready to go.  I was determined to get somewhere with this doctor.  I had already seen her once and spent a lot of time getting records together, waiting 4 months for another appt, and driving to the office to see her.  I wasn't going to waste all of that time and energy.  Plus, she's a GI motility specialist and I want to be fixed!

At one point in the conversation the doctor said that she couldn't know for sure that I have gastroparesis (slowly moving stomach) without testing.  I proceeded to tell her that I have had lots tests done and she should have the records. That doesn't count the year and a half of symptoms of gastroparesis and colonic inertia... but, once again, that would mean she would have to listen to and trust what I said. She asked me what test I had done to determine that I have gastroparesis (even though she had all of my records right in front of her) and I told her that it was a gastric emptying study.  She asked me if I had it done there at the hospital she works at.  I told her "no".  She then told me that she doesn't trust the results of the test unless she's the one doing it.  Nope, she's not cocky at all!  My mom said that she could do the study and the doctor said she wouldn't do it as long as I'm on pain meds.  I then said, "Okay, how long do I need to be off of the pain meds for that?"  She told me 48 hours.  If she's a doctor at all she knows damn well that I can't get off of pain meds completely for 48 hours without getting sick from physiological withdrawls and that's not to mention the amount of pain I would be in. Trust me, I know from experience from the time that the pharmacy screwed up my order.  I was so sick and stayed that way even after I got the meds in my system.  Once something screws with my body (withdrawls, virus, etc.), the mito wreaks havoc.  However, I don't think she cared.

My mom explained to her that she had not discussed treatment even once.  She was so worried about what was causing my gastroparesis and colonic inertia (slow moving bowels) that she did nothing but argue with us about that instead of discussing treatment options.  Once my mom brought that up she quickly rattled off the names of a bunch of meds. She took 30 minutes to prove that she Googled Mitochondrial Disease and argue with me about the cause of my GI problems and less than a minute to tell me treatment options... and that was only because my mom asked.   She then said that none of them would work, though, because of the pain meds.  I then asked her "if nothing works because of the pain meds, then why does the domperidone help?"  Her immediate response was not the answer to my question, but instead saying that she cannot condone the use of domperidone since it's not approved in the US.  She said, "especially since you have cardiomyopathy".  When I told her that I don't, she even argued with me about that.  I know my own body, lady!!!  I'm pretty sure that when she looked up my disease on wikipedia and saw that it can cause cardiomyopathy, she assumed that I had it instead of looking at my records.  Obviously in her research she didn't find that there are over 40 different types of Mitochondrial Disease and within each type each person is different.

After I explained to her that I couldn't get off of all pain meds for 48 hours we were all basically done.  She had said that she wouldn't treat me as long as I'm on pain meds.  So my mom was definitely ready to leave at that point.  There was no reason to stay anyway.  As my mom was putting on her jacket and gathering our things, I proceeded to tell the doctor that I was actually planning on getting an intrathecal pain pump.  Because of that, I would not have the side effects of the pain meds anymore. (At that point I wasn't trying to get anything out of her anymore.  I was just trying to make her look foolish or feel bad for jumping to conclusions and saying that she wouldn't help me because of the pain meds.  Of course, it didn't work.  She's WAY too cocky for any patient to make her feel bad.)  That would then eliminate the one thing that she thought was causing my gastroparesis and colonic inertia/dysmotility..  Once again, I was wrong.  "Who told you that?" she said.  "You will still have the side effects of the meds while on a pain pump."  I explained that I had done a ton of research about intrathecal pain pumps for one; and, for two, the anesthesiologist that is my pain doctor informed me of that fact.  However, that didn't matter.  Just like she didn't care about what the mito specialist said, she doesn't care about what the pain specialist said.  She knew more than both of them.... and me, obviously.

She made it clear that she didn't agree with the fact that I'm on pain medications.  I cannot stand those doctors!  I completely understand why doctors have a problem with the frequent flyers that come into the ER all the time wanting pain medications because they're addicted and/or they sell it.  However, I have been diagnosed with a chronic disease that is occasionally fatal that is documented  to cause a significant amount of pain.  (see links below)  I am receiving those medications from a pain specialist who monitors my disease and my pain more often than any of my other specialists monitor me.
UMDF Mito 101 - page 6 of this pdf document in the section titled "Adult Symptoms".... coincidentally enough, the same page that contains a picture of me and my daughter (top left corner)!  Ha!
MitoAction Clinicians Guide to Mitochondrial Disease - Pain in Mito -
I want to point out one specific quote from this link - "Chronic pain in Mitochondrial Disease should be well managed as pain is a significant stressor and has the potential to lead to further decline and lactic acidosis." -

So, I can get off of the pain meds so that my GI system will work (even though I, and many of my doctors, don't think that will even make a difference), but I will be in excruciating pain 24 hours a day, 7 days a week.  But, of course, this doctor doesn't think about that or care about that because it seems that, like many doctors in this world, she believes that taking pain meds is the same as drinking a beer after work.  That it's just for recreation and they're not a necessary prescription for my illness.  However, they are just as necessary as my heart medications. (see quote above)

In the end my mom and I walked out of the room with the doctor still sitting there.  Out of all of the doctors I've met in my lifetime, both as a patient and a nurse/coworker, she was the most cocky, inconsiderate one and she could care less about taking care of me.  When I got out into the hall I stopped and told her that if she ever has the joy of seeing a patient with mitochondrial disease then I highly suggest that she doesn't act like she knows everything about mito and that she actually listens to the patient.  She, of course, argued back but I don't remember what she said.  I was SO pissed off by that time that I don't know if I even computed what she said.

I have never seen my mom that upset in a professional situation like that.  That's how I knew that I wasn't overreacting.  I know I have done so in the past (yes, I have overreacted before... I know you're all shocked, but, yes, it's happened) ... but, if anything, I was calmer than I should have been in that situation.  Well, on the outside that is.  The entire appointment was about nothing but arguing about the cause of my GI issues, which have been established a long time ago, treating me horribly because I take pain meds, and talking down to my mom and I.  She had no desire to help me get better.  All she wanted to do was make sure we knew how smart she is.

When I left the appointment my neck and face were more red than I have ever seen them.  Imagine a lobster...that's what I looked like.  I was not hyperventilating but my hands and feet were tingling. When I went to get in the car I could barely stand because of the weakness in my leg muscles.  I felt awful!  Not that I wasn't mostly aware already, but that definitely showed me how extreme stress affects my body.  The physical manifestations of my anger/stress were coming out left and right.

Obviously I'm not the only person who's had a bad experience with her.  Healthgrades reviews shows that only 25% of people who reviewed Dr. Esfandyari would recommend her to family or friends.
Health Grades - Dr. Tuba Esfandyari

So, if you are in the Kansas City area and you're looking for a gastrointestinal doctor who specializes in motility issues and you come across Dr. Tuba Esfandyari at KUMed, keep looking.  Dr. Tuba Esfandyari is NOT someone you want to see.

Tuesday, April 9, 2013

My Grandpa

Yesterday, I buried my grandfather. That was one of the hardest things I've ever done. He was the only grandpa I've ever known and he was very close to my heart.  I agreed to say something at the funeral.  I, of course, wanted to put something together ahead of time.  That was definitely the hardest thing I've ever written in my life.  I had a very difficult time putting it together.  What I had to do was tell myself that I was just writing a blog post about my grandpa, instead of writing something I was going to stand up in front of 50 people and say about my beloved grandfather the last time I will ever see him, his funeral.  That is what kept going through my mind when I was trying to think of what to say/write.  Now can you see why it was so hard for me to put it together?  (Not like you couldn't before I said that.)

So, since I wrote my "speech" like I was writing a blog post, I thought it only appropriate to share it with all of you, the people I share just about everything with.

Before I get to that, I have a little side note... I have received many emails in the last few weeks from readers of my blog.  I want to let you all know that I am not ignoring your emails.  I love hearing from you and fully plan on writing you back.  I have spent so much time and energy (energy that I don't have) with my grandpa in the last few weeks while he went from the hospital, to the nursing home, back to the hospital, to hospice, and finally, laid to rest.  I have had to spend what little energy I have left over with my family and on the many fundraisers I have committed myself to.  I will be catching up on emails and blog comments in the upcoming week(s).  Thank you for your patience and understanding.

Now, to my grandpa, who I love dearly.  May you rest in peace...

Why do I love my grandfather?  Let me count the ways...

I'm sure you're thinking, "He's your grandpa, of course you love him.  Everyone loves their grandpa.  That's just the way it is."  Well, yes, that's the way it is in life.  Everyone loves their grandparents.  Right?  This is different.  My grandpa is different.  There's no way to not love him.  Everyone loved him.  So, I didn't just love him because that's the natural way of things... because I'm supposed to love him.  I loved him because of who he was.

He was kind.  No matter who you are, my grandpa treated you with respect.  My grandpa grew up in a day and age that not everyone was treated equal.  He was no different.  Many times I would question my grandfather's views on people who are different than you and I.  I didn't always agree with the things he said.  However, he always seemed to surprise me.  Anytime we were out and about together I saw a completely different person than I expected to see.  I didn't see a person who treated people poorly based on the color of their skin or the religion they practiced.  I saw a person who respected everyone equally... who treated everyone with kindness.  

Because of that kindness, my grandpa had many friends.. many people who loved him.  I know it's cliche, but he would give the people he loved the shirt off of his own back if they needed it.  He was always helping others in any way he could.  After I got my nursing degree I was always trying to help him with anything medical related.  However, it wasn't as easy as it sounds.  Why?  You ask.  He wouldn't let me!  Every now and then he would call me with a question, but not as often as I wanted him to.  He would always say, "I don't want to bother you."  Before I got sick he didn't want to "bother" me because I was busy with my kids and my job.  After I got sick, he didn't want to "bother" me because he was worried I would be asleep or not feeling well.  That always drove me nuts.  Why?  I guess because I took after my grandfather.  I wanted to help!  All I wanted to do was help him.

He was smart.  I loved to sit and talk to my grandpa.  We would just sit and talk for hours.  We would talk about the war, his service station, current events, or whatever else we would randomly come up with to talk about.  I may not have agreed with all of his opinions, but I respected them none the less.  He had a reason for believing what he believed.  His life experiences gave him a view on life and I respected that.  I may not have agreed with it, but I respected it.

He was funny.  He was ALWAYS making me laugh.  Always.  I think his main goal was to make me smile.  If that's true, he succeeded.  He was always joking and playing around, when all he really had to do was look at you with his infectious smile.  He was joking so often that I didn't know when he was serious.  When I was a child, I had gotten in trouble one time (I was such an angel of a child, you see).  I was staying with my grandparents, as I often did during the summer as a child, and had gone across the street to visit with the neighbor without telling my grandparents.  When grandpa finally tracked me down he was, obviously, very upset.  He grabbed my hand and sternly walked me across the street.  As he did so, he said something to me to let me know how upset he was.  I laughed.  Yep... laughed.  He immediately let me know that he wasn't joking.  I always remember that day as the one day my grandpa wasn't kidding. 

He loved his wife and his family.  One of the best qualities my grandpa had was how much he loved his wife.  Out of all of the qualities I strive to imitate, the way he loved his wife is the best.  Even after 65 years of marriage he loved her more than ever.  They still held hands and kissed like they were newlyweds.  When he spoke of grandma it was always very apparent how much he loved her.  When I think of how I want my marriage to be, I always think of my grandparents.

I have spent a LOT of time with my grandpa.  However, it's not the empty time that won't be filled that I'll miss.  What I'll miss is the lessons I learn by talking to and being around my grandpa, the smile and laughter I always have when I'm with him, the kindness I experience when I'm around him, and most of all the enormous amount of love that I feel by being with him.  

Tuesday, April 2, 2013

Life continues to beat me down

This is has been such a difficult month for me.  If you have read my blog recently you would already know that.  It hasn't gotten any better yet.

The most important thing that's happening right now is that my grandpa is dying.  He fell and broke his hip a month ago.  Most people are well aware of what that usually means for an elderly person.  It hasn't been any different for him.  Last Wednesday (6 days ago) we decided to put him on hospice.  He had failed his swallow study. When he was still doing well he specifically stated that he did not want to have a feeding tube.  So hospice was the only choice.

I have been trying so hard for the last few weeks to have enough energy to be there for him, my grandmother, my aunt, and my dad while also dealing with my own emotions.  It has, of course, been very difficult.

"Dealing with my own emotions" has not just included the extreme sadness I'm feeling from dealing with my grandpa dying (who I have always been very close to).  It's also because of everything else I'm going through at the moment.

I am still feeling very alone despite being around people day in and day out.  Maybe that's because I can't even pay someone to come take care of me and/or hang out with me.  As I said in a previous post, my parents have offered to pay someone to help me out.  I was definitely extremely happy about that.  Whether my grandpa is sick or not, I really need help and haven't been getting any.  I thought maybe being able to pay someone would help.

I have now had 3 people who were going to do it and all 3 times have fallen through.  One of the three bothered me the most.  A friend of mine who I met through the mito community (she has a son with mito) updated her status one day a couple of weeks ago that she's available to babysit if anyone needs help because she and her family were needing some extra money.  I sent her a message saying that she could come babysit me.  After we established that I was actually serious, she was very interested.  We worked out all of the details and decided when she would start.  On her start day she texted me to let me know that she was sick and couldn't make it.  I let her know that was okay.  A couple of days later I texted her to find out if she was still planning on coming the next week.  She never responded... twice.

Of all people to do that, I wouldn't expect it to be a friend.  I can see that happening with a complete stranger but not a friend.  I just can't believe she wouldn't even give me the respect of letting me know that she couldn't do it.  I would've understood if she would have just told me.

Since then I have had one other prospect and that fell through as well.  So... my family and friends are too busy to help me and/or even call me to make sure I'm doing okay when I've been sick a lot recently (3 major crashes in the last month).  And now I can't even pay someone to help.  I have needed help more than ever over the last month with being sick so often, dealing with a family member who does nothing but stress me out, and my grandpa being so sick and now dying soon.  You know, awhile ago I tried telling myself that I just need to accept that my family and friends are too busy to help, or in some cases, help on a regular basis.  Now I guess I just need to tell myself that I may not find someone I trust to pay to help either.

I am having an okay day today... so far.  However, I have not been doing well at all recently.  There's just only so much stress and heartache a person can deal with and that amount drastically decreases when you add mitochondrial disease to the mix.

Oh yeah... I wanted to tell everyone about the worst doctor's appointment I've ever had.  I will have to save that for my next post.  I will tell you right now, though.  If you're in the Kansas City area, do NOT see Dr. Tuba Esfandyari.  She is the most cocky and rude doctor I have ever met in my life.  More to come on that.

Last, but not least, I wanted to let all of my readers know that I am sorry if I haven't written you back yet.  I have a few emails from readers that I have received over the last month.  I just haven't had the extra time or, especially, energy to write everyone back.  Once my grandpa passes and after the funeral, I'm hoping that I can write all of you back.  As I said in my last post, I REALLY appreciate my readers and greatly appreciate hearing from each an every one of you.  So please know that I have read your emails when they came through and have every intention of emailing you back... I just haven't been able to yet.

Life's too short... go hug your loved ones.