Sunday, January 22, 2012

The way I have fun on a Friday night

Hey all.  The last time I left you I mentioned my little trip to the ER.  I won't keep you in suspense any longer.  I know you haven't been able to sleep or work or eat since you read my last post because you couldn't think about anything else.  I'm so sorry to do that to you.

Now... back to reality... I'm sure all 3 of the people who read my blog are doing just fine.  Most of my family and friends are since most of them heard through the grapevine or facebook (my husband posted that I was in the ER) and they haven't called to see why I was in the ER or how I've been doing since then.  So if they aren't too worried then I'm sure my blog reading friends who've never met me aren't losing any sleep over it.

Last Wednesday I had an EGD to make sure the severe reflux I have from my gastroparesis isn't damaging my esophagus.  The doctor talked to my dad after the procedure and let him know everything looked fine.  I slept most of the rest of the day because of the drugs they used to sedate me for the procedure.  The next morning I woke up with a horrible headache and nausea.  Nothing I did helped either problem.  My headache remained at a 5-8 out of 10 on the pain scale all day and the nausea and vomiting persisted right along with it. I tried 4 different nausea medications, my migraine med, and my pain meds.  None of it helped.  I was not able to keep much down in the way of food and fluids.  I went to bed that night figuring that I would feel better when I woke up the next morning.  Unfortunately, I was wrong. (I know... that doesn't happen very often.  It came as a shock to me as well.)  I woke up with the same excruciating headache.  The nausea and vomiting followed shortly there after.

The problem is this... With my mitochondrial disease, I can sometimes get stuck in a vicious circle.  Many times, the cause of my bad headaches, nausea and vomiting is too much activity and dehydration.  However, when I have a headache that bad along with nausea and vomiting I am unable to drink many fluids.  That leads me to further dehydration.  Becoming more dehydrated makes my headache and nausea worse.  Worsening nausea keeps me from getting any fluids.  Do I need to keep going or do you get where this is going?

The problem, then, is that I need to get re-hydrated enough to push me out of the downward cycle.  The only way to do that is by getting IV fluids.  I also, by that time, needed to make sure that my body was not entering into a catabolic state.  You can read more about catabolism and mitochondrial disease here.  Luckily, I was not to that point.  I was able to receive IV fluids and go home after my labs came back normal.

As I discussed in my previous post, my palliative care nurse and I are working on getting setting up for home IV infusions.  My nurse, primary care doctor, and I need to discuss the best way for me to receive them (i.e. PICC line, peripheral IV, or port).  There are pros and cons to each.  So I will have to weigh all of my options.  I am really hoping that we can speed the process along.  I would like my last visit to the ER to be just that.. my last visit to the ER.


Michelle Roger said...

Crap. I'm so sorry you had to go through all that. Hope you are on the mend and feeling a little better. Hope you can get those IVs set up quickly. (hugs)

Anonymous said...

Hello Mighty Mito Mamma. I am confused by your recent visit to Atlanta. It sounds like the specialist did not think that your genetic testing was consistent wtih mitochondiral disease. Do you have a specific diagnosis or are they now needing to do further testing? Maybe I just misunderstood your post.

Robin said...

So sorry it's taken me so long to respond. The mito specialist I saw does not know with %100 certainty that the mitochondrial DNA mutation that was found is the cause of my mitochondrial disease. If I want a genetic diagnosis I can have the full DNA testing done which would test all of my nuclear DNA.
However, my diagnosis remains mitochondrial disease. A genetic cause for mito is not necessary for a mito diagnosis. I did ask her the specific question, "If you were to give me a second opinion as to my diagnosis of mitochondrial disease, would you agree with the diagnosis?" She stated that with the oxphos testing performed on my muscle biopsy that showed defects in Complex I and III, my clinical picture (signs and symptoms), and with a mutation found in my mitochondrial dna, even if it may not be the full cause of my mito, she would give me the diagnosis of mitochondrial disease.

I hope that answers your question and I'm terribly sorry, again, that it took me so long to respond. It's been a rough month. Take care!

Anonymous said...

Ok, so you are not happy with how people show their love to you. Guess what, we all show love differently. I cna guarantee you that most of the people that are your friends and family care about you more than you will ever know and love you more than you will ever know. They may not be there on a day to day basis, but you just have to feel it in your heart. Trust it. Know it. Feel it. it's all you can do. They are there for you. They just don't know what to do. I am betting that many people call or text or email because that is what they feel comfortable doing to let you know they care. And that's not a bad thing. No one will understand how you feel. it's just that simple. None of us can. Period. If you want all of us to try to understand, then that goes both ways. You must then try to understand that those people that love you do just that - love you! They just don't know how to help. And then have their own lives, kids, spouses, jobs, family illneses, bills to pay, or maybe their own mental or physical issues. So, you have got to realize that when people don't treat you the way you want, it DOES NOT mean they don't care. Please find some peace and comfort in that for your own well being or you will keep beating yourself up over it. Try to remember every day when you wake up that there are people all over that are thinking of you, praying for you, wishing away your pain an wanting it to end. They are there. You have to FEEl it.... not see it or touch it. Just know it.

Libby said...

Sorry, I cannot agree with "Anonymous." I want to agree, but I can't. I don't necessarily agree with the expectation that people should respond to the Facebook post, but it does not stop them from sending a private message, an Email, nor from placing a call/text. Unfortunately, there is also no guarantee that everyone on our friends list is going to see the post, even when FB says that someone has a seen is possible that the end user tapped on the app on accident and then closed it...kind of like the preview feature in Email. It says we opened the message, but in fact we did not.