Phil's medical notes

Here are today's medical notes.
We went to the family doctor today to get a referral to get a second opinion for another GI doctor. Just to get a second pair of eyes to see if anyone missed anything.

We saw a new family doctor because Phil's regular doctor is out for 4 months cover at the wound care center. We really like the new PA. She took her time. Read the notes, read back the notes, wrote more notes, offered some different ideas that we didn't even think about.

While we wanted to get a referral to a neurologist, all the signs and symptoms still point to Chronic Pancreatitis.
What is Chronic Pancreatitis (even though Phil has had this diagnosis for over a year, I'm still not completely sure what this entails)?
Chronic Pancreatitis is (taken from www.ncbi.nlm.nih.gov)
Inflammation of the pancreas that does not heal or improve, gets worse over time, and leads to permanent damage.
Symptoms include:

Abdominal pain

Greatest in the upper abdomen

May last from hours to days

Eventually may be continuous

May get worse from eating or drinking

May get worse from drinking alcohol

May also be felt in the back

Digestive problems

Chronic weight loss, even when eating habits and amounts are normal

Diarrhea, nausea, and vomiting

Fatty or oily stools

Pale or clay-colored stools

Treatment:

People with severe pain or who are losing weight may need to stay in the hospital for:

Pain medicines

Fluids given through a vein (IV)

Stopping food or fluid by mouth to limit the activity of the pancreas, and then slowly starting an oral diet

Inserting a tube through the nose or mouth to remove the contents of the stomach (nasogastric suctioning) may sometimes be done. The tube may stay in for 1 - 2 days, or sometimes for 1 - 2 weeks.

Eating the right diet is important for people with chronic pancreatitis. A nutritionist can help you create the best diet to maintain a healthy weight and receive the correct vitamins and minerals. All patients should be:

Drinking plenty of liquids

Eating a low-fat diet

Eating small, frequent meals (this helps reduce digestive symptoms)

Getting enough vitamins and calcium in the diet, or as extra supplements

Limiting caffeine

The doctor may prescribe pancreatic enzymes, which you must take with every meal. The enzymes will help you digest food better and gain weight.

Avoid smoking and drinking alcoholic beverages, even if your pancreatitis is mild.

Other treatments may involve:

Pain medicines or a surgical nerve block to relieve pain

Taking insulin to control blood sugar (glucose) levels

Surgery may be recommended if a blockage is found. In severe cases, part or all of the pancreas may be removed.

Prognosis:

This is a serious disease that may lead to disability and death. You can reduce the risk by avoiding alcohol.

Complications include:

Ascites

Blockage (obstruction) of the small intestine or bile ducts

Blood clot in the vein of the spleen

Fluid collections in the pancreas (pancreatic pseudocysts) that may become infected

Poor function of the pancreas

Diabetes

Fat or other nutrient malabsorption

Vitamin malabsorption (most often the fat-soluble vitamins, A, D, E, or K)


Since I was having trouble figuring out what Chronic Pancreatitis was...I thought I'd clue you in on what I know about it.

While this will probably be with Phil the rest of his life, we were pretty optimistic after his appointment today.
Although the specialist could tell us more about this "disease", she was pretty reassuring that if they hadn't found any abnormalities in his blood work just yet, he at least doesn't have cancer. WAHOO. When the doctor told him this, Phil turned white. Whiter than I had ever seen him in my life. I guess that has really been weighing on his mind. So he feels a little better about all this doctor business stuff.

So the notes from today went something like this.
I have a note book that I take so I can take notes at his doctors appointments.
I first listed his symptoms which have over the past two weeks include:
Fevers
Chills
Sweating
Nausea/vomiting
Trouble sleeping
Excessive pain that won't go away with pain medicine
No response to the Celiac Plexus

Our goal at this appointment was to:
Get a referral to get a second opinion at another GI
Question if we should see any other specialist
Any other auto-immune disorders (we will ask the specialist to test for auto-immune diseases)

The outcome of our appointment was:
Continue with Pain Management- best bet to get through this
Get Splanic neurotomy (like the Celiac Plexus but will permanently kill his nerves and if nerves grow back they should not be painful).
Referral request sent in for another GI
Request an Ultrasound/scoping for the pancreas

SSRI's can cause Chronic pancreatitis (did not know this before talking with this doctor)

Weekend Update

Well despite feeling horrible I give Phil and A for effort for attempting to "get back to normal" and get through the weekend.
He got out of the house for a bit yesterday and today he was out of the house for a while also.
YAY!
But he's still in a lot of pain.
I give him an A for his attempt to still do normal stuff.

So we got through the weekend and tomorrow we are off to the pain management appointment.
I plan to still call for second opinions this upcoming week.
Thanks for all of your prayers and your input!

A moment of clarity

So I had a moment of clarity when I woke up this morning.
For the few months that Phil was feeling well, except for going to the scheduled doctors appointment and the surgery, I made no effort to call and schedule extra appointments. There didn't seem to be a reason to since the treatment plan he was on was working.

Well this week. I don't know what happened differently but if you read my previous blogs, something is gone totally wrong.
This morning I think God spoke to me.
This idea of getting a second opinion was really strong. Not only getting a second opinion from a different GI (although the GI he has now is supposed to be the best one in town). I had a realization that maybe we should visit a neurologist. Maybe the problem isn't actually his inside parts but a neurological issue that's causing all this pain. So my plan this week.
We see pain management on Monday.
Call the family doctor get a referral to both a neurologist and a new GI.

We'll go from there and see where we are at.
He also has to get his blood work done, both for the current GI he is seeing and for the allergy clinic that he goes to.

I absolutely can't believe he is back in this much pain again. He was doing so well.

Another Day

Day two of waking up and almost going to ER.
Back to the routine of sitting a bath and taking a handful of meds to get the pain to go away.
This time Phil was only able to keep the pain away for 4 hours (its supposed to last 6 hours with one and 12 hours with the other).

Went for a small drive this morning since Phil has been home almost all week.
But again, it was like he ran a marathon and is now in and out of sleep.

He gets hot and cold. He sweats then is freezing.
He is doing better about not complaining....but today it must be bad because he's been doing a lot of that complaining stuff.

I must have been born in the wrong family....
My mom was totally awesome (at least with me and my grandmother) when we got sick. She took great care of us.
Unfortunately I didn't inherit that empathetic gene from her, so I feel kind of stranded. Actually I've learned to deal with it by taking the doctor approach. I question him about his pain, where its hurting, if he thinks he's taken or done anything differently, then bit by bit I question until we think we've pin-point the problem thus finding a solution.
Probably not a great way to do it, but I guess thats the only way I know how to deal with it.

We have an emergency appointment with his pain management team on Monday.
Cancelled another appointment.
Getting more blood work done.
Going to get allergy shots next week.
Made an appointment with GI for the beginning of February.

The Talk

This morning Phil and I had the talk.
His last pain management regiment went really well. Really well. So well, I wish we could do that one all over again!
I'm not sure if this Celiac Plexus just didn't work as well, they didn't hit the nerves just right, or maybe they missed something or maybe lowering the pain medications was a bad idea this month?
He is more uncomfortable now. We spend most days in our pajamas, ok Phil spends most days in his pajamas. Some days he makes a real effort go get out of the house and we go and do stuff around town. Usually it only lasts about 4 hours and he's back on the couch sleeping like he just ran a marathon.

So this morning, we had the talk.
"Will I ever be able to work for someone else again?"
"Could I make it on the job for a week with out calling in sick?"
"What if the doctor overlooked something?"
"What is this node they keep talking about on my pancreas, that supposedly isn't anything to worry about?"
"Should we get a second opinion?"
"WHAT IF ITS CANCER?" (of course I tell him to be quiet after this)
But then....it sets in. "What if it is?"
So we discuss this further. Other treatment options, second opinions, further testing etc.

Can Phil really just go on living his life through Celiac Plexus, morphine, percocet, and a hand full of other medications that he takes daily, or multiple times a day? Really?
We have no accurate account as to what is really going on. Why treat symptoms if we don't know the cause? Isn't the cause more important than treating something we have no idea what we are really treating?

One thing, I'm sure its not just one thing.
The nose surgery helped.
Next on the list is the allergist.
Get weekly allergy shots.

But allergies aren't connected to the stomach.
Its frustrating. I really really wish things could go back to normal. But if I can't take normal, I'd really like for things to go back to October-December 2011. That was the best he has felt in just over a year.

Some days he wakes up thinking that he might have to go to the hospital. Great. He goes to the hospital. Then what? What do we tell them to look for? They are the doctors, they are supposed to know this stuff but every time we've gone in, they look at us for answers.
So then, do we wait it out and call the doctor? But which doctor do we call? Do we call the pain management about the pain? Do we call the GI Specialist about other underlying issues that could be causing all the pain that he is in? Do we call the family doctor to see if maybe we could just get a referral over to the hospital so our wait isn't so long when we go?

I do have to say, Phil is a super trooper. He has kind of taken to his hobby, but honestly I don't mind. Because it keeps him busy, it keeps his mind off things. But mostly I love his hobby because he doesn't complain. In August when I first started staying at home with him. He would complain everyday. He would lay on the couch, and moan, and groan, and get snappy. He now has sucked it up, learned to deal with it for the most part. On days he really doesn't feel well, he will lay on the couch and either just watch TV or sleep. He doesn't complain (except for today). He has been amazing. Really and truly.

Last week we had Ava home with us for winter break at her school. Although she was sick the entire week, we all sat on the couch watched movies and TV. I'm not proud to say that my daughter now knows all the names of the cartoon characters on TV. Not a proud moment. But it was relaxing. I really saw the bond between Ava and her daddy grow ten fold. He has always loved her and he has done things for her but last week was an amazing exception. He held her, he gave her high fives. They cuddled and he helped her out with her bike and her colors and food and everything. He did good.

Hopefully we will get through these stupid medical humps and be on our merry way. Hopefully someday he will be able to live with out the medication. And hopefully someday we will find the cause for all this craziness.

Medical Update

So about two weeks ago Phil had his Celiac Plexus shot.
Not sure if its working too well this time.
Phil seems to be in slightly more pain than usual after his shot.
Of course Ava has been sick for the past two months (almost straight) so maybe he caught whatever bug she's been carrying around.

He's been in better spirits although with Ava being sick, we've sort of gotten lazy and have spent a good portion of our days (at least this week) on the couch watching TV and movies.

On the days he forgets one of the pain meds before bed it usually takes him about two hours to get up in the morning.

I see improvement. Even with these small set backs, what he's going through now is nothing compared to what he was going through three months ago.
He even complains a lot less!!!

Sometimes its hard for me to tell when he's in pain. He hides it pretty well. When it gets bad he gets a little snappy, but heck, I bite people's heads off if I have a headache.

So while we are entering the new year with high hopes that this year will bring good news, health improvements and everything else. Phil is still truckin'.

A new post!

Well its been about a month since I last did an update on Phil.

Phil recovered REALLY well from his surgery in November. YAY Phil!
His breathing is so much better. His nose doesn't run. His eyes aren't poofy. Best of all; No more snoring!!!

Phil had weekly doctors appointment with his ENT (Ear Nose and Throat doctor) for a little over a month. He has now gave the ok to go 2 months in between doctors appointments. Wahoo!!!

Phil has gone from about 3 doctors appointments a week to about 1! That's a huge improvement! His pain is still...up but he's doing pretty well with it.

We went out of town. He did pretty good! There were two pretty bad days out of the 6 days we were gone. One of the days, I was pretty sure we were going to have to seek out a hospital but Phil toughed it out and we all got through it!

Today Phil went to his first allergy appointment, EVER. Required for follow up so the polyps won't return, at least 10 + years!
The doctor (Ava's doctor too!) went over the paper work Phil filled out.
Then we got to the fun part!
They poked Phil's back 72 times and watched the prick marks for 20 minutes to see what he's allergic to.
Then they retested about 6 more specific trees.
And the test results came back.
Allergic to trees.
Allergic to most Nevada brush and shrubs.
Allergic to: Cats, Horses, Dogs, Feathers etc.
Pretty much to sum it up. Neti-pot
Can't mow the lawn, if he does he has to wear a face mask and take a shower immediately after.
Use A/C from May-October and avoid going out side.

So we now go back weekly for allergy shots (so he can build immunity) for about 6 weeks then every three weeks for 6 months.
Excited and hopeful that these allergy shots will work. :)