When Stomachless And Causing Problems Pays Off

Quick Update From Yesterday's Surgery.

As far as we know the surgery went fine. My eye is sewed shut and will remain so until next Wednesday. So once we understand how the eye is working we can plan our next move.
This is my fifth or sixth surgery since the accident. Before each surgery I have mentioned to the surgical team that I do not have a stomach, we talk about why and then it is never mentioned again.


That is until yesterday.
I was told by a couple folks to make sure that the Anesthesiologist knew about it. So when he came in and did his spiel I told him that I had a total gastrectomy and about some of the challenges that could bring. He asked a lot of questions and said, "Ok that is important to know, thank for telling me" and excused himself (they were still working on getting the I.V. started).
When the Anesthesiologist returned he notified me that based on what I told him he was changing how they were going to change how they managed my health while I was out. Like I said earlier I have had a few surgeries with this misadventure, but this is the first time anyone came in and told me that they were changing my care due to the fact that I told them that I was stomachless. They may have changed it, but if they did they didn't tell me.


What did they change? The concern was something coming back up the esophagus and ending up in my lungs. So if I remember this correctly, instead of using medicine to make sure that nothing comes back up the esophagus, they made the decision to put a breathing tube in to block any chance of something ending up in my lungs.
I can only believe that the other teams did similar things but just did not inform me of it. This was the first time that someone came in and said I am going to change what I do based on this information.
I guess it pays to be a pain after all.


By the way to put the wedge they had to remove the custom plate. So I asked about the custom plate that they put in and if they were going to save it in case that for some reason this surgery went bad. The plate was made with a cadaver bone, so the short answer was no you couldn't save it to use again at a later date.
His question to me? Do you want it?
Heck Yea!


Everyone is helpful, everyone is kind
On the road to Shambala
Everyone is lucky, everyone is so kind
On the road to Shambala
(Shambala  Three Dog Night)

Stomachless and causing problems.

One of the problems being stomachless is that people don't understand it. 

The concept of living without a stomach is completely foreign to them. You are constantly explaining why you don't have a stomach, how your plumbing works, and how your life changed after your total gastrostomy.

I would like to say that this limited to the everyday person on the street, but many medical professionals do not comprehend it either. It is just not that common of a surgery and CDH1 mutation, where the number of affected families grows every day, is still very rare.

Due to this you end up becoming your own health advocate.

For example.

This past week I received a call from the U to go over the prep and details on Monday’s surgery. You know details like where the surgery is being done. When the surgery is. What time I need to show up. Reminding me that I need to get a pre-op exam before Monday. All pretty normal stuff.

Then they told me that I could only drink clear liquids and have nothing to eat after midnight on Sunday.

Well there is a problem.

It is not that this is anything new. I knew they were going to say it. This is not my first surgery. What changed was the time that this surgery was going to take place at. Before now all of my surgeries/sedations (insert dilations for strictures here) have been right away in the morning. This surgery is not scheduled until 2:30 in the afternoon. I don’t have to show up before 1:00PM.

The surgery is one hour long, with and they estimate an hour in recovery.

So if I eat right after that, I will have gone almost 17 hours without eating and that is if I eat just before midnight. Not a big fan of eating that late. So it will probably be closer to 20 hours without food, if I eat around 9pm.

For someone without a stomach that is bad. We need to eat often, in small quantities. As I have mentioned before, what works best for me is to graze all day. I usually have one meal so to speak, and then just munch my way through the rest of my activities. It works for me. My weight has stabilized and even if I go three or four hours without food I am fine, In this case we are looking close to 20 hours without food and that is if I feel like eating right after the surgery. I am not sure I am going to be up for that.

So I let the scheduler know that this timeline would not work for me and asked if this was a hard and fast rule that I couldn’t break or was there some wiggle room with the midnight timing. I went through the whole stomachless thing and she did not know what to say. I get that a lot.

She asked if it was possible to “eat a large meal as my late meal to carry me over?” I explained to her that there was no such thing as a large meal for someone without a stomach so she would have to come up with a better plan. She said she would have to get back to me and with that we ended our conversation.

In the end I got a call back a few hours later with some options.

None of them were great options, but options none the less. The midnight thing is just something they tell everyone. It covers them no matter what time the surgery is. The actual number is closer to eight hours. Well they actually said eight hours, but they said eight hour before I checked in, not when the surgery was scheduled for. We agreed to disagree on that topic. On their timeline I can get up and eat as long as I do it before 5AM. Not gonna happen.

I talked with my doctor and she suggested that I get up as early as possible and if I felt like I needed something have a piece of toast and her words “don’t tell them, you should be fine.”

I learned a number of years ago that I needed to become my own health advocate. Too often in today’s world we get told standard answers that covers the person answering the question no matter the question or the industry you are asking the question of. If these medical misadventures have taught me anything is that you need to ask why. And if you don't like the answer ask again and again until YOU are comfortable and satisfied with the response.

In the end it is just about you.

I will post something after Monday’s surgery. Thanks for stopping.

These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel

(Why  Annie Lennox)

"Sometimes I just think funny things" Dudley Moore, Arthur

So at the end of my last blog, I made the statement that:

“Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.”

Remember that?

I thought it was a funny line so I added it.

It was just supposed to be a funny thought.

Then there was today.

Due to a bunch of different reasons I am moving my care to the University of Minnesota from North Memorial. This has nothing to do the with the care I received from North Memorial they have been absolutely amazing top to bottom. It is just better for my family and I if we move to the U at this point in my recovery.

I met with the DRs from the U of M this morning.

The next surgery is scheduled for this coming Monday. They are going to go in, remove the custom plate that was put in and put then replace it with the wedge. The wedge will raise the eye and move it forward. Once done then they can go in and work the muscles around the eye to get everything into alignment.

That is where the conversation got a little wonky.

Once I heal, a second surgery will take place. A different doctor will handle the procedure to do all the aligning. They are going to go in and make “adjustments” to the muscles surrounding the eye to get it as lined up as possible. They will then close me up and move me to recovery.

Once in recovery they will make the final “adjustments” to get the eyes lined up once again for single vision.

Adjustments in recovery you ask?

Remember the comment about going in and adjusting the headlights using the screws?

The statement I thought was funny.

It was just supposed to be funny.

Yeah, that is what they are going to do, sort of.

I will not have screws, but they are going to attach surgical thread or something to the muscles surrounding the eye.

Once in recovery they will then pull on each thread/string/wire/clothes hanger/whatever separately until they get the eye in a place where it lines up with the other one and I have single vision again.

Sounds painful.

My hope is for good drugs.

And I love the clothes I wear
Where their life goes I don't care
It's my price I'm proud to pay
I'm a freak

(Freak   Kiss)

Chasing Squirrels... A Medical Update

Now I might be aging myself a little bit here, but remember the round/square headlights on the older cars?

For one reason or another one would get out of whack and it wouldn’t look down the road quite right.

My dad would always ask me if I was chasing squirrels with that headlight because it was always running pretty high up in the trees. It was his subtle way of telling me to fix it.

So I kind of have a headlight/eye out of alignment. It is not up chasing squirrels in a tree out of whack, but out enough that I cannot use the eye. I have to wear an eye patch pretty much 24/7.

I have had five surgeries on that eye and have been working on setting up the sixth. Now I haven’t posted for a while and thought this might be a good time to give you an update on where my recovery is at.

Now this particular story starts with a comment about someone else.

Recently I was meeting with the surgeon who is, scratch that, was going to do the next round of surgery. The surgeon was saying all the right things and she was confident in the procedure, but then she made this comment;

“I was just talking with the lady in the next room and I was able to tell her that I was 90% sure that I could fix her problem. I am nowhere near that with you. My goal is to see if we can create a sweet spot in your vision field that you can function with.”

SERIOUSLY?

I think I will be getting another opinion. Thank you!

So I headed to the University of Minnesota and met with an eye surgeon there. Regrettably the news didn’t improve much. They ordered a new CT Scan which I had the next day. The team there that is going to review the CT scan and then let me know how they would proceed. However right off the bat they told me that they may need to rebuild the eye socket again. The concern is that my right eye is significantly lower and sunken further back than my left eye. Due to this the surgeon I met with doesn’t feel they could adjust the muscles around the eye enough to get it into alignment. He still needed to see the CT Scan and meet with the rest of the team, but that was his initial thought.

So I met with The DR from the U last Thursday and had the CT scan done on Friday. On this past Monday I met with the surgeon who did the last round of surgery at North Memorial and he concurred…… 

With the U of M….

At least kind of...

Like at the U Of M, he doesn’t feel that the muscle surgery will work because my eye are too far off kilter. His recommendation though was different. He wants to go in and put a wedge in to try to get my eye to align. A wedge?

This will give you an idea as to how tired I am of all of this, this is what popped into my mind. I picture one of those wooden leveling wedges that you use on door and window frames and the DR. with a hammer just tapping it until he thinks it’s level and then snapping off the excess.

Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.

It could work.

And the squirrels could rest.

 

I've always listened to your point of view

My ways I've tried to mend

And I've always been a patient man

But my patience has reached its end

(Blue Morning Blue Day  Foreigner)