Back to Bloomington

Started the morning at the lab for that one last blood test, then to the pharmacy to pick up prescriptions. And then I dropped Shawn off at Midway and am now sitting here feeling a little shell-shocked. Time to figure out what it is I do for a living and start doing it again I guess.

He got out just in time, a big winter storm is supposed to be hitting here tonight.

One last test for the road...

So after telling Shawn he could go home tomorrow, the doctor called on his way home from work tonight with one more blood test he wants Shawn to do before he leaves. Sure hope he has some blood left by the time this is over!

His flight is at noon, we'll be at the lab first thing in the morning.

Sent from my iPhone :-)

An email I just have to share...

I mentioned last week that Shawn got an email that really picked him up. In high school, Shawn was on the board of our temple's youth group for a couple of years. The email was from the youth group's advisor. I was going to put part of it on this blog, but in reading it again I can't think of what part to cut, so here it is in its entirety:

Shawn, I wanted you to know how proud I am of you and the way you have been handling everything.  As hard as it's been for me to deal with, I can't even imagine the toll it's taking on you.  The unfairness of the situation is horribly compounded by your place in life...the freshman year of college should be about new beginnings, exploration and discovery.  How sad I am that this has been so disrupted for you and your family.
 
However, through it all, you have behaved with grace, courage and wisdom, when you could have responded with anger, impatience and denial.  I know the latter isn't your way, despite your insighful and realistic perspectives on life and your wicked sarcasm.
 
Working with teenagers has always been a sort of love affair for me.  I love seeing the growth you all experience and hope that I can, in some small way, teach you some of the things I have learned.  In this case, however, it is you who are teaching me and I am grateful for that and always will be.
 
You are my rock, and I love you for it.  As I've said many times, and meant it every time, I (we!) are here for you in what ever way you need.  If you want me by your side for any part of this, just say the word and I will be there to hold your hand, to pray with you or just to tell you really good jokes (the only kind I know, despite what Amy says).
 
All the best, my brother.  You are in all of our thoughts and prayers and I have faith that you will pass this test as you have so many before this.
 
PS--Make sure you hug your mom a few hundred times a day...she really deserves it, and you'll feel good too.

OK perhaps I'm just partial to the PS... :-)

What's next?

That seems to be the million dollar question.  As Shawn's post says, this week's scan did not detect anything.  The test is supposed to be accurate 85% of the time, which does still leave us with a bit of uncertainty.  There are also some other test results that haven't come back yet, which might help guide us as to what to do next.  But at this point Shawn's blood pressure is doing better with the new medication, and the chest pain and  shortness of breath are under control, so there seems to be no immediate danger.  And of course he wants to be back at school in the worst way... 

One new medication is being added to the mix, so he's on three different things; using the alarm on his new iPhone to remind him when to take what. 

How do I feel about him going back to school?  Certainly happy for him as I know it's where he wants to be, a little relieved that at least for now the dangerous symptoms are under control, and a little scared about how long it's going to take till we really know what is going on.  

Still Uncertain

So here's the breakdown of the results.  At this point, carcinoids are not ruled out yet because while the test was negative for seratonin producing carcinoids, there are other types that produce other hormones.  Right now, I'm going back to school on multiple medications that will control the symptoms and continue testing for more exotic types of endocrine hormone producing tumors and other diseases.  I will post more when we know it.

Scan day three - back in the waiting room

Today is the last of the three day scan. But as I indicated yesterday, I'm trying very hard not to put too much hope in actually finding something in this scan. Of course that doesn't mean much because of course I'm hoping....

The stress of not knowing much is certainly getting to us all.

Shawn's 19th birthday is a week from tomorrow. Yesterday I bought him an early birthday present - an iPhone. My iPhone has been incredibly useful in keeping in touch with the rest of the world during these last few weeks, and he's been wanting one for awhile.

Complexity 6-7 on a 5 point scale...

Last night Shawn's doctor (Walter) called, there was a talk this morning at Northwestern by a doctor from the Mayo clinic , Dr. Young, about diagnosing illnesses such as Shawn's. Walter and Dave both attended, while I waited for Shawn at his scan. Dr. Young said that these cases are exceedingly difficult. He said that at the Mayo their normal scale of complexity for a case is 1-5, and most of these he'd rate as a 6 or 7. Sounds to me like the upshot of this is that we may be in store for more and more tests. Carcinoid is only one of the possibilites, it sounds like there are others as well. So we could be in store for even more waiting for that right result to appear...

Falling off the face of the earth

This song from Neil Young's Prairie Winds album keeps going through my
head:

I feel like I'm falling
Falling off the face of the earth
Falling off the face of the earth

Nothing new to report, I'm back in the waiting room, just falling off
the face of the earth. Later today we're going to see a psychologist to help him better cope with all this.

Sent from my iPhone :-)

Waiting room part 2

Back in the waiting room. After this morning's injection, we went to
Foodlife, a restaurant in Water Tower Place (a few blocks from here).
Shawn was in pretty good spirits and very hungry. He had a large
slice of pepperoni pizza, then a meal of salmon, macaroni & cheese,
mashed potatoes...As we were finishing up he started getting very
tired, belly pain, flush face. You can almost see how he feels by
looking at the redness of his face. Coming back from lunch took
longer as he was really dragging. Got back here about a half hour
before the scan and he fell asleep in the waiting room until they
called him to come back.

Sent from my iPhone :-)

Waiting room

Shawn just went back for the injection part of the scan. I know we
have lots more waiting rooms in store, wonder if we're ever going to
get used to it?

Sent from my iPhone :-)

No chest pain or wheezing all day!

The antihistamine certainly seems to be doing the trick for the chest pain and wheezing.  He's had none since starting it. Headache, belly pain, and flushing still around though.  I think flushing may be less intense though.  

Doctor stopped over today (it really helps when you know the doctor personally AND he lives fin the same town).  He said the first round of tests for serotonin came back negative, but it could be because of the tylenol they gave him in the hospital the first night (which they weren't supposed to give.)   Also could mean that the tumor is very small which would be very good.  

Shawn was pretty exhausted for most of the day, but I think he's a little more energetic tonight.  We played Monopoly again tonight - Shawn won this time.  (And I don't even think he cheated.)  I have to say that I feel like we are all getting a little slow in doing mental arithmetic... my brain just feels sluggish.   Mental exhaustion seems to have settled in.  

The well wishes and generosity continue to pour in.  We've got meals for the next few nights and many others offering to help out when we need it.  Shawn's doctor even contributed to tonight's meal, his wife brought over a full dinner including pasta sauce he made - quite good, by the way, Shawn wants to get the recipe.   How many doctors do you know that not only make house calls but also cook for you???  

No real idea what to expect in the next few days; guess we'll just have to take it a step at a time.

Switching medication

Last night Shawn had a bad attack - lasted almost 2 hours; chest pain, flush, short of breath, which started bad and steadily got worse - it was over two hours before he felt better.  Heart rate and bp were up throughout this time as well: in the 170/80 range.

Today, his doctor switched bp meds again, he's back on the one he was on in the hospital, which seemed to work a little better.  Also, now that he's finished the urine test for seretonin, he's on an antihistamine to block seratonin.  And that seems to be WORKING.  He hasn't had chest pain or shortness of breath since taking it.  He does still have a slight flush, and abdominal pain that he says has been climbing steadily the last few days.  But all in all, I'd say he's feeling lots better since starting the antihistamine.

Arie is here with him which has certainly lifted his spirits.  We started a fire in the fireplace tonight and we all played monopoly, a nice evening.  (Dave won.) Certainly beats the evenings in the hospital!  

Zebras

The zebra is the official mascot of the carcinoid awareness and support network. The rationale for the selection is apt.

In medical school, doctors are taught "when hearing hoofbeats, think horses, not zebras." Carcinoid has been thought of as 'rare' and therefore may be considered a zebra.

Fortunately, Shawn's doctors stopped thinking horses and started to think about zebras. Uncommon does not equal impossible.

We were hoping the zebra was mild-mannered and easily tamed. Unfortunately, some zebras turn out to have a bad attitude and like to spit. Shawn's doc seems pretty convinced that carcinoid endocrine tumors are the culprit. Unlike pheochromocytoma or other adrenal tumors, carcinoids ('Noids') got 'tude. They like to multiply, visit new places, and come back after being evicted.

I am not normally one to look for silver linings in black clouds. However, in addition to many loving family members and friends, Shawn is blessed in three ways. First, we found a doctor that did some serious digging. Shawn's clinical picture has been complicated and a definite challenge. Second, we got to the bottom of this before Shawn's symptoms became life-threatening. Given that Shawn went from borderline hypertension in July to dangerous blood pressure spikes by January, we are fortunate the doc was monitoring the symptoms closely and took immediate action. Third, Shawn has good insurance. Without insurance, there is no way this would have been found until it was too late. It is sobering to think of the 47 million people in our country without insurance.

If the doc is right and the zebra turns out to be carcinoid tumors, here is a link for ways you can "show your stripes."

Peace and love to all.

Home sweet home

It was so nice to be home today. I woke Shawn up at 10 to take his BP medicine but he then went back to sleep till after 11. I think it's the longest he's slept in quite a while.

He's had a few friends who are going to school locally stop by today - first Kisa, now Spencer. He's also been getting calls and emails from so many friends, it's heartwarming. He got an incredible email from Jeffrey which really lifted his spirits - Thanks Jeffrey. I liked what you had to say even before you told him to hug his mom; and by the way I completely agree with your assessment of what an incredible person Shawn is!

I'm also overwhelmed and heartened by the outpouring of support I've had - my family, friends, co-workers... it really helps keep my spirits up. Thanks to all of you. I truly feel blessed to have such wonderful people in my life.

More details about next week: Turns out there are three scans, first one Monday, second on Tuesday, and final scan on Wednesday. We'll be that at 10:30 Monday for workup and injection, back at 2 for the scan. Then 7:00 on Tuesday and 8:30 on Wednesday. The Wednesday scan will be the longest, about 2 1/2 hours. The other two are about an hour each.

No news at all today, but his doctor is trying to get us on the schedule to meet a surgeon on Wednesday afternoon while Shawn's still here.

Rolling, Rolling, Rolling...

The normal progression would be to wait for blood and urine tests, re-doing them as necessary until finding the actual hormone being secreted, and then do a scan to find the tumor. But while the CT scan was normal there were spots with questionable soft tissure that could be hiding a tumor. That, paired with the physical symptoms have made his doctors decide to perform the next scan now, rather than wait. The scan being done is an octreotide scan, a procedure that is done over 48 hours. A dye is injected, 4 hours later a scan is done, and 48 hours later a second scan is done. There is radioactive material in the dye, which goes to the tumor, making it 'light up' during the scan.

They were trying to schedule it for tomorrow, but could not get the material needed for the injection until Monday. So we'll come back Monday for the first scan, and again Wendesday for the second. In the meantime, Shawn's doing two more urine tests this weekend in order to provide more data as soon as possible. Hopefully, at least the first set of results will be back by Wednesday.

So now that the ball has started rolling it is quickly picking up speed. His doctor now seems fairly certain that we're on the right track here.

My get-well present to Shawn is to fly Arie up here for the weekend. Did you hear that, Arie? It's my PRESENT to Shawn. You're not paying for the flight!

GOING HOME tonight - but back for tests on Monday

First the good news: Shawn's being discharged tonight. The bad news: because they can't schedule the next test they want to do until Monday. So he's home for the weekend, back here (as an outpatient) for testing on Monday and Wednesday.

Will post more from home, getting prepared to leave now.

Post from the Hospital

So I'm sitting here in the hospital right now and here's the summary from me.  They have me on new medications that have the blood pressure under control.  Still having some surges in hormones causing overreaction to stress, etc.  The big thing is that for the next month or so they're going to be looking for the cause in the blood pressure changes and everything else.  From what it sounds like, the best case scenario is a small carcinoid tumor that is easily removed so I'm voting for that.  Basically, I'm ready to get out of the hospital and go back to school.  My friends on my floor sent me flowers and I've talked to Arie a lot since I've been here.  I'm still not feeling real well but I'm hoping that will start improving with the new medications.  I'll try and post again soon and hopefully I'll do that from somewhere other than the hospital.

Exotic blood? No, just exotic tests...

The CT scan of the lungs is normal. Preliminary results of the MRI also look normal. We are still waiting for results of blood tests
that are "exotic" - meaning mostly that they will take longer to get results. Also still waiting results of urine tests (which he's still
collecting)

Meanwhile they are phasing Shawn off of his current meds and starting him on others - calcium channel blockers and alpha blockers instead of beta blockers and diuretics. So far today that seems to be doing much
better, in fact part of the day it was too low. So they'll be adjusting that a little more tomorrow.

The upshot of this is it looks like we'll leave here tomorrow with no diagnosis but hopefully a better handle on the BP. Possibly he'll be redoing some of the exotic tests and urine tests in the coming weeks, depending on how the first set come out.

Not the quick answer we were hoping for but hopefully the most dangerous symptom is under some control - and the rest is at least under investigation.

Sent from my iPhone :-)

More waiting

Passing the time waiting for the MRI - Shawn emailing and talking to
Arie. Check out his cool IU slippers!

Shawn with bear and photo

Great photo of Arie & Shawn on his nightstand. The bear is one Shawn had as a kid, but that Arie now sleeps with - she's given it back to him for the hospital stay! Also note the two phones... With mine that makes three!

Waiting for MRI. Sounds like it will be early afternoon. Till then Shawn can't eat. :-(

The Hardest Part

It is only fitting to quote a lyric from Tom Petty, one of Shawn's favorite songwriters. It says it all.

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part

Here at least two days

They have two days of urine they want to collect under controlled circumstances so looks like we'll be here until Thursday. Hope to know more tomorrow.

Sent from my iPhone :-)

A photo

Shawn in the ER this morning

-onins test

Nurse just came to take blood for the various -onins tests. They've now ordered both an MRI of the chest and a CT scan of the abdomen. Not sure if the MRI is today or tomorrow.

Sent from my iPhone :-)

Room 1429

Nothing else to report. He's here and getting hooked up. He wants to go home. He really likes the snazzy robe though - complete with the all important open back.

Sent from my iPhone :-)

In the ER

We're in the ER right now. BP was 170/96 when we first got here, a whole swarm of people descended on him. Did an EKG, gave him oxygen, not even sure what else...Now BP is back down, 155/73 at last measure.

We're waiting to be admitted. At this point they think he'll be on one of the general floors rather than the ICU.

Sent from my iPhone :-)

Call at 5am starts the recovery part of this journey!

got a call this morning at 5am.  Shawn's doctor said he made a judgement call last night that he should have had Dave and I make.  He thinks Shawn has an adrenal tumor and that he should not only be diagnosed but also there are treatments he can start which will make him feel better.  Last night he was toying with having Shawn go to the ER, but as Shawn wasn't feeling bad when he talked to him his thought was that he'd have the doctor at the clinic make arrangements for him to be admitted to the hospital today.  But last night he looked up Bloomington, realized the hospital there was likely to be small, and that maybe we wanted him here in Chicago instead.  (Which we DO).

Just got him on the 10:00 flight, gets here at 10:00 as well (time zone change) and we'll take him from there to Northwestern.  Not sure when I'll have more to report, but I can update this from my phone as we know more.  I'll call when I can but to be honest the best way to keep up right now will be through this blog.  

Technology at its finest - Google Docs started this ball rolling and Google's blog will keep you up to date.  I may buy more Google stock when this is over.

A doctor that makes a 'house call'- when the patient isn't even there!

Don't know if I've mentioned it yet here - I don't want to use actual names since this is on a public site, but Shawn's current doctor is a friend of ours. (Funny story, I'll add it here sometime... when we first went to see him we didn't know that's who we were going to see.)

SO, right after we saw this doctor in December, he was going out of the country, and I had some travel books I lent him. Tonight he stopped by to bring them back. He asked how Shawn was feeling so we told him not so well; seemed to us he was getting worse and worse. We talked for awhile about the aldosterone test, like why was the 24 hour test positive if the blood tests were both negative(He said he really didn't have a good answer for that but if things didn't get better he'd probably try repeating the test). Then he suggested that he could possibly try a drug that lowers aldosterone and if that WAS what was wrong his blood pressure should drop right away. We were discussing that and I said that I knew Shawn was now keeping a journal of his blood pressure at more regular intervals. He said he'd talk to Shawn in the next day or so to get those numbers.

Time for a commercial break: Ever heard of Google Docs? http://google.com/docs. This amazing FREE tool allows you to create documents and spreadsheets and share them over the web with others. You can edit shared documents and each see what the other person has added. Really simple to use, works alot like Word and Excel, except the document is stored online in a place that everyone who has been invited to edit the document can access it.

Why the commercial? Well, Shawn has been keeping his journal on Google Docs, and sharing it with me (This allows me to stop nagging him when I see he's been recording values throughout the day!). So when we were talking about the journal I said "Actually, I can show you the numbers right now" and I pulled up Google Docs.

He started reading the last few days (worst reading so far was yesterday afternoon - 226/178, heart rate 120.) Then he asked if we could get Shawn on the phone, as he said half to himself "this isn't just anxiety".

The upshot is that he wants Shawn to go to the clinic on campus tomorrow, and then have the doctor give him a call while Shawn is there - he has a whole set of other tests he now wants to run. Some of the things he's interested in are seretonin, adrenalin, calcitonin, (maybe a few more *onins for good luck?) He says the kind of spikes he's seeing doesn't look like aldosterone but maybe one of these other *onins... There were a number of other things he mentioned but with each one he said it probably wan't that because of one reason or another. To be honest I couldn't keep up after awhile... The big thing is that he's now finally got the idea that something is really wrong and that this can't just go on like it has been... this feels like a really huge step forward.

Breathe a big sigh of relief... things are looking hopeful again.

Frustration

nothing more to say really...

Not even sure what to say - back to square one?

Shawn talked to his doctor last night but I don't really know what to say here. The second blood test does not show a high aldosterone level. I have no idea what that means. Earlier, the doctor told me that sometimes a test won't show something even when it is there and sometimes they have to test multiple times. But he's not suggesting that Shawn repeat the test again at this time. He also said earlier that the 24 urine test is more reliable, and that test DID show high levels. (No idea how high, we don't have the test results at the moment). So I don't know where that leaves us.

He told Shawn to journal his blood pressure both lying down and standing up at various times during the day and fax that to him next week. He also suggested we might need to re-increase the Toprol. :-(

It feels like we're right where we started - Shawn feels like crap, the medicine isn't working, and we have no explanation.

Neurologist report

Shawn just talked to his neurologist. The MRI looks fine. I guess we
now know definitively that he does have a brain, he'll have to come up
with some other excuse next time he does something really idiotic ( a
certain chin-up bar comes to mind...)

Most likely cause for the headache is adrenal. Still waiting for
latest blood results.

Back to School

Just came back from dropping Shawn at the airport, he's on his way back to school. I miss him already. I feel less panicky when he's here with me. But I know he's happier being at school, around all his friends (and girlfriend).

Now on to the waiting for results to see what we do next.

Chemically induced hepatitis?

One of the things included in this morning's blood tests is a liver panel - his liver enzymes were slightly elevated at his first blood test on the 18th of Dec, and then more so when he was in the emergency room on Jan 1.  His doctor told him he suspects chemically induced hepatitis. I'm assuming that's from all the drugs he's been on - I wonder if he'll need to go off the Toprol?   And if so, then what will they use to lower his blood pressure?  Guess we'll find out next week.  

Initial MRI results ok - final results next week

Doctor's office just called, initial results look fine but the final results won't be available till next week.  So back to the waiting for now. 

Waiting for results

Today's tests are all complete, now we're back to the waiting game. 

We left here this morning at 7:15, figured we'd leave plenty of time for traffic and finding a parking spot - so of course we got to Rush in 15 minutes and found a spot right away.  Then because we were so early there was no wait at the lab for the first blood draw - we got to the MRI waiting room over an hour early.  Shawn asked when he should take his pill and the receptionist said she'd let him know.  A few minutes later she said go ahead and take it now - they ended up taking him back a full hour before his appointment, at 8:15 instead of 9:15!

After taking the Valium Shawn was just sitting and reading a magazine and didn't feel anything - till they called him back and he tried to stand up, that is.  He said the MRI was fine, he kept his eyes closed and was just fine.  At one point he said he heard ringing and said 'Hello' thinking it was a phone.  

Went to Cosi for breakfast after it was all over;  Shawn was still a little loopy but hungry (he wasn't allowed to eat before the tests).  

Neurologist report

Saw the neurologist today - he says the physical exam looks fine, he isn't expecting to find anything on the MRI.  They will be doing both an MRI and an MRA (if there is time).  From what I gather, the MRA looks at the blood vessels in the head.  They've also rescheduled it for tomorrow morning so that he'll be able to call us with the results during the day tomorrow.  

Meanwhile, how is Shawn feeling you might ask?  Pretty lousy.  He is however very excited about the Hebrew class he's teaching - yesterday was his first class.  He's having the kids do a mitzvah journal.  He also is excited about the classes he's taking this semester - all education classes except for Hebrew.  

He'll be repeating the blood test tomorrow morning; we need to get there when the lab opens at 8, then be at the MRI by 8:45.  Can't do the blood test afterward because they'll be injecting dye during the MRI.  We would have done the blood test today but we couldn't get the order for it - they were faxing it from his doctor's office at Northwestern but their fax machine was down.   

Shawn's not thrilled about the MRI as he's pretty claustrophobic.  The doctor gave him a prescription for Valium, to take one a half hour before and a second right before if he needs it.  He did say that they could also do an open MRI but that it wasn't as accurate and they couldn't do the MRA that way; so Shawn opted for the better test.  

Time certainly is relative!

So it feels to me like we've been here forever - waiting, waiting, waiting to hear the next doctor say 'everything looks fine' while we know that there has to be something wrong or why would Shawn be feeling like this?

Turns out the 7 months of this we've been through is NOTHING. Reading support boards for Conn's Disease and Pheochromocytoma you can see people being told they are lucky they ONLY had symptons for FIVE YEARS before being diagnosed. It makes me want to cry.

Dr. appt, MRI

moving forward in leaps and bounds! Shawn has an appointment with a neurologist tomorrow at noon, and an MRI scheduled for Friday at 6. I'm both relieved and scared - relieved that he has an appointment and scared at what they might find. But as I said before, they can't start treating this till they find out what it is, and at least we're on the way to finding that!

Keeping everyone posted

I know everyone wants to know what's happening with Shawn, and I know how hard the waiting to find out information can be - we are unfortunately in the same boat as information is coming s l o w l y - but we are at least now going forward rather than standing still.

Anyway, I thought a blog would be a good way to record what's happening. Maybe even help keep me sane in the process. (Or maybe not...)

Here's my understanding of where we are to date: Shawn's initial blood test showed a high level of aldosterone. Aldosterone is a hormone that raises blood pressure, so a high level would be consistent with his symptoms. Based on that, his doctor ordered another test to check the level of aldosterone in his urine. This test involved being on a high salt dosage for three days, collecting urine for 24 hours on the third day.

The urine test also showed high levels of aldosterone. Here's where things get confusing: in the meantime, the lab reversed their initial report of the blood test, saying that the aldosterone was not high. At this point, his doctor wants to repeat both tests.

Besides the tests, in general Shawn has been feeling worse and worse. The day of his first doctor appointment (Dec 18) he started to get a headache that he still has. I think it's sometimes better than other times but never really gone. On New Year's Eve, he had stabbing pain every time he moved his eyes - ended up in the ER on New Year's Day where they did a CT scan, reported there was no fluid buildup behind his eyes, and gave him vicodin for the pain. He's trying to take it only when he really can't handle the pain; actually it isn't even helping much but does take the edge off.

So we're now bringing a neurologist into the picture - I'm supposed to be hearing from one today to make an appointment.

So - keep an eye on this blog for the most up to date news. I hope that things will start to move quickly and we'll go from here to an actual diagnosis so we can start talking about how to CURE what he has, (or at the very least TREAT it) rather than worry about what it IS.