Tuesday, October 30, 2012

30 October 2012

First day back.  Blood test revealed a 19K... more than I expected but low enough to continue the doubts about effectiveness.  Plan is for a test on Thursday and transfusion on Friday if needed... or not if the count stays up.

These stitches are starting to itch.

Monday, October 29, 2012

29 October 2012

This should be a day for checking out of the  hospital and going home to Maui.  Waiting to see Okazaki to discuss the plan.  First blood test gave 60,000 after the two units yesterday and just had a new blood test.  Waiting for results.

Looking forward to getting back home and taking the next steps forward, whatever they are.  I'm in a battle with some unknown force, one that wishes to challenge my life philosophies.

Straub Clinic could use Internet for coherent patients.  This room is a triangle also and a bit hard to fit things for comfort, but it's private and that's cool.  The guy next door is the loudest snorer I've ever heard.  Other than those, this is a good place.

Will update this entry in awhile.

4:10pm... at airport heading back to Maui.  Released by surgeon.  Discussed plan with Okazaki and it comes down to watching platelets to see where they stabilize.  An underwhelming response.  I'll get a test tomorrow.  He was more impressed by the 60,000 numbers this weekend than me.  

Tomorrow will begin the new era of this challenge aimed at further correct specific diagnosis of the problem. 


28 October 2012

This morning was the first blood test to see what impact the missing spleen has on platelets.  Yesterday, post surgery count was 68,000 and the reading today was 28,000.  This was not good news, but to get a better feel, another blood test happened later in the day.  The count for that was 14,000.  So, platelets are still not surviving.  The attending doctor visited a couple of times and said he'd keep me here at the hospital until tomorrow when the other doctors could come up with a way ahead plan.  He hooked me up to a couple more units of blood.

The primary issue through most of the day was to move gas through my system and deal with the massive post-surgery bloating I've been dealing with.  Had some success there.  Went on liquid-only diet, etc. Walked the hallways and took a walk to the "healing garden" at the hospital as well. 

Saturday, October 27, 2012

26 October 2012 - Post Surgery

Splenectomy is complete.
No complications I'm aware of.
Private small room.
Old "War of the Worlds" movie on.
No results yet on whether it worked - i.e., higher platelet count.

On a morphine drip controlled by me.

27 October - Recovery Day 1

The first night went pretty well.  Mr.  Morphine kept the pain to a manageable level and I was able to sleep off and on with the typical hospital sleep interruptions.  Woke up for the new day at about 600am when they wanted some blood.  That resulted in some decent news of a platelet count at 68,000.  However, the surgeon pumped a lot of platelets into me during the operation, so it's not clear how much of that came from surgery.  The next read will be tomorrow morning and an increase will say a lot.

I have four incisions... three on the left torso for the laproscopic spleen removal and one on the lower right near my groin where the radiologist did the embolization of the spleen artery.  According to the surgeon, there were only 9-12 drops of blood during the operations.  Nice to hear.

Just went for a walk around the hospital floor hallway with Lisa.  Used a walker and it went alright.  I'm off the morphine and on to Vicodin in pill form.  Eating regular food and not attached to IV at the moment. 

Doc said I would likely be released tomorrow, but would need to stay in Honolulu until Monday to get a platelet read and see how that's progressing.


Thursday, October 25, 2012

25 October 2012

Spent the day at Straub Clinic and Hospital doing pre-operation activities.  Flew over with Lisa at 7am and started with meeting the surgeon and going over the planned procedure.  It seems likely that she'll use the laproscopic approach.  Had some blood tests and a contrast CT scan to check out the surgery region.  The contrast fluid via IV was supposed to make me feel warm and give me a sensation that I'd peed my pants.... that didn't happen for me.  Talked over the procedure for cutting off the blood supply to the spleen with the doctor that does that.  Met with the anesthesiologist.  A nice lady from the French part of Canada.

Overall, it was smooth and professional and well-coordinated.  Tomorrow will start at 0730 in admitting and then move to radiology for the embolism in the artery to the spleen.  The main surgery is now scheduled for 1210pm.  It's supposed to be 2 hours with a 1 hour recovery either in the normal recover or ICU depending on what the doctor thinks.  I guess all of the rooms there are private, so that's nice. 

The good doctor doesn't expect to see me leaving before Monday.  There seems to be a desire to monitor my platelet response carefully prior to release.  Makes sense.  

Also scored some new Vicodin the other night which worked better than the previous... better mix.  That's helped the hip situation, but it's still pretty sore. 

It's been a long road to get to the splenectomy.  It's now a milestone of sorts.  Let's see how it plays out.

Wednesday, October 24, 2012

22 October 2012

It's morning in America (afternoon in parts) and platelets pump into me earlier than normal. 

24 October 2012

Long day at the hospital getting red blood cells and platelets in preparation for the flight tomorrow to Oahu.  Enjoyed a hospital lunch and snuck three small bags of M&Ms while sitting there.

At my request, Dr. Okazaki came to visit and talk about the surgery plan and how he will be tied into the surgery progress and data for platelet counts.  He reminded me that this is a risky surgery due to ITP but the plan for closing off the artery to the spleen should reduce the blood enough.  They'll keep platelets flowing into me until they see some stability or rise in count.

Started the day with one hour of sleep after a night of pain in my hip again... sciatic nerve pain and such.  I've been delinquent in dealing with this officially with the physician.  Hopefully it won't be a major issue over the next few days related to surgery and then I'll just nail it next week.  Tired of feeling this pain and not sleeping.

Tuesday, October 23, 2012

19 October 2012

Remember the stubbed toe?  Now it's a black toenail atop my pinky toe on the left side, held on most likely by skin that will eventually die and release the nail back to the earth.

Today's platelets didn't find a welcoming committee in my body, and instead met with the force of my immune system.  The allergic reaction I had started in my arm pits... a little itch that was just enough to catch my attention.  Soon enough, it walked across my body like sandstorm... a wall of rash moving across while they quickly shot me full of Benadryl and we awaited the outcome.  Of course, as it does, Benadryl won and by the time I was in my truck under the beating sun of Maui, the rash had subsided.  The Benadryl had not, so I sat in my warm truck and enjoyed the sunshine until I could safely drive myself 1.2 miles to the house. 

My work day was wiped out for the most part.

Sunday, October 21, 2012

21 October 2012 - Surgery Info

Surgery information from last Friday evening.

Thursday, I meet with the doctor in Oahu at 0930.  Straub Clinic and Hospital.  Dr. K. Huong will make a go versus no-go decision on whether to do the surgery the next day, and will decide what's the best surgical procedure (more later).  I believe that Dr. Okazaki has worked out most details that make this a procedural thing more than a real decision, but you never know.  If the "go" is in play, then I follow with two pre-op meetings with nurses and then with anesthesiologist and some others.  They claim I'm out by 2pm or so.

Friday is surgery day and I'm 2nd on the list, so that means a schedule of something like 930am.  It's a two-hour procedure, depending on which procedure she selects.  Dr. Huong typically uses a laproscopic surgery approach, but might do this a different way depending on the consultation.

For all you wiki fans... here's the link to that:  http://en.wikipedia.org/wiki/Laparoscopic_surgery

Normal recovery / release is 1-3 days with average of 2.  Will I be average?  Accelerated?  That will be the big mystery. 

Positive thought for the day:  The spleen can weight up to 7 ounces... so I'll be losing almost 1/2 pound after this. 

Okay... back to football.  What?  The Raiders won?

Thursday, October 18, 2012

18 October 2012

Last official day of physical therapy.   I have to say this has been a plus all the way around since the big event.  It helped grab the vision back and it has helped me regain sensations and such on the right side... stabilize my general movement and has even helped regain some muscle bulk after so long of no working out.   I might get an extension for continued work after the surgery next week.

Lip and chin are still numb.  Shaved my face so it stopped poking my cheeks and irritating off and on.  That helped with things.

There are many positives that come from this experience.  My guess is that the blog doesn't highlight those much.  It occurred to me that I might be using this blog as a factual venting for things that come off as negatives more than positives.  It's informative but not happy.  I, on the other hand, remain hopeful that plowing through whatever roadblocks life wants to put in my way... aches, pains, numbness, and today's newest... a stubbed toe... will lead to a better me and a better life on the other end.


Tuesday, October 16, 2012

16 October 2012

Today is your basic discomfort day.  Woke up at 330am with hip pain and hit the tylenol bottle.  Slept more and worked it all out a bit in the morning.  Arm is freaking out a bit so went for a few stretches.  Biggest problem is the reaction to eating in my mouth.  Teeth hurt but cheek burns.  Overly sensitive. 

Casey arrived in the afternoon, so all that other stuff is secondary.  It's good t see him.  5'8" now. 

Set up an appointment with primary tomorrow for a potential x-ray of hip.  Maybe get to the bottom of that pain.


Monday, October 15, 2012

15 October 2012

Just past the weekend.  Had my lower left jaw go numb on Sunday, but only the front part.  Likely a bleed on the nerve midway back... according to information gained from the last time my right jaw went numb.

Tired yogurt for the first time in years... the non-frozen kind.  Fruity.  I could eat more of that. 

At the oncology area getting platelets.  The doctor told the patient next to me how good he looked.  The patient responded... "I wish I looked bad and felt better"... I can relate to that.

Took off and came back for red blood cells.  Hemoglobin at 8.2.  One mystery... why does this stay down even after two units of blood?  First time I had this, it stayed up.  Now, it drops back down fast.  Doctor always points to the rituximab.  I don't know. 

Sunday, October 14, 2012

13 October 2012

The only thing worth noting today is that my hips hurt like H all morning and then was fine and then hurt like H again at night. 

Friday, October 12, 2012

12 October 2012 - Pop's Birthday

Just a regular platelet day here... early morning transfusion to last the weekend.  Lip seems to be regaining some feeling.  Hip is really sore today after waking me up at 4:30am.  Tried stretching and some tylenol and that took the edge off.

Yesterday was physical therapy #7 and it went well.  Focus on right shoulder sensations.

Dr. Kepler called to confirm that he set up a MRI for November and said I should get the MRI results from the hospital, versus requesting that the hospital send them... apparently they find ways to delay.  I told him they annoyed me because I had to pay $15 for the last disc.  He wants me to go visit with Dr. Rogers too... the local neurologist that's connected to Stanford.

Some good news... I've been smashing my foot into things like doors and furniture more regularly lately... so that's back to normal.

UPDATE:
Tried chiropractor today to see if popping that back/hip combination might serve my pain.  Still feeling it but maybe tonight with some ice it will dissipate.

Thursday, October 11, 2012

10 October 2012

Platelet count at 4K prior to transfusion.  Right lower cheek still numb so I'm discovering the joy of software foods.  Still managed to crunch through 5 oreos.

Hip feeling a bit better due to nice "pop" in hip this morning after moving leg around and stretching.  Still hurts... but a notch lower or two. 

Arm spot is clearing up as well, but still spotted all over arms and some on face too. 

New MRI is scheduled for 13 November to support Stanford diagnosis / confirmation of previous diagnosis.  Tried to make a point to my primary that the hospital just did a MRI on Monday, but I might have to reiterate.

Monday, October 8, 2012

8 October 2012

Routine plans today disturbed by a new numbness on my face... my lower right jaw.  After some teasing moments of numbness Sunday, I woke up at 4am with an established numb lower right jaw... much like a post-Novacaine feeling just prior to getting your tooth drilled. 

I checked in for platelets at 8:30 am and reported on the numbness and was promptly sent to Emergency for a CT Scan, which then resulted in a CT Scan and a MRI.  It was a light day at the hospital so they fit me in quickly.  I had the same doctor that I had when I went to the emergency last time.  After those tests and some blood work, it was determined that both showed negative results for a new brain bleed and the original bleed area was resolving itself well.  Good news but a new mystery. 

Speculation is that I have a bleed near my TMJ, a hematoma and blood got on the nerve that feeds into the jaw (the exact nerve the dentist goes after).  The hope is that it will self resolve now that I have new platelets and any bleeding has been shut down.  In the meantime, I am slobbering more and have a hard time telling if my spoon has actually deliver the soup to my mouth. 

Platelets - 3 and hemoglobin 7.7.  I got two units of red cells today as well. 

Sunday, October 7, 2012

7 October 2012

Not much to report today.  Weekends are usually just a waiting game to see how well I can feel until Monday. 

Eating today, I discovered this odd relationship between hot foods and the right side of my lower lip.  After eating hot soup and then chili later in the day, my lip became numb like it was hit with Novocaine.  It goes away soon after eating.

That hip joint pain is significant today, but that topic is getting old for this blog.

Friday, October 5, 2012

5 October 2012 - New Surgery Date

I went for platelets today... afternoon session after a work meeting.. and got the call that my surgery date is moved to 26 October, with a 25 October consultation.   A two week shift.  Mixed feeling about that.  I was looking forward to getting that out of the way and moved into the past.  But, more time gives the rituximab a chance to kick in more.  Okazaki seemed a little indifferent to that theory.  I think he realizes I just don't respond to these things.  So, anyway... 25-26 October. 

Platelet count was 4 before the transfusion.  Hemoglobin still low.  Monday will be platelets and red blood cells.

Wednesday, October 3, 2012

3 October 2012 - Casey's Birthday!!!!

I started my day with the platelet IV followed by three vaccination shots to ward off pneumonia strains, some kind of influenza and meningitis.  My arm feels GREAT.  Also had an EKG to check the heart for abnormalities, etc. 

P-Count was 4.  That was disappointing, but nothing new.
Go A's!  That's got nothing to do with my physical health, but adds some to the mental state of being. 

It was good to get some work done too, thought it wasn't much more than talking. 

Surgery information is trickling in.  Apparently, I get a catheter in an artery leading up to my spleen to shut off the bleeding... my primary care guy noted that they use an intentional embolism to close it off.  That's a bit different than the specialist described... gotta do some reading.  This happens on the 11th and then spleen removal and disposal occurs on the 12th.  No times yet.  Will investigate further tomorrow with the nurse in Oahu.

Tuesday, October 2, 2012

2 October 2012

No medical news today.  Still waiting to get information about the surgery later next week. 
 
I woke up feeling good after a decent sleep with a large pillow between my knees.  Good advice that's worked for one night so far.

Last night was a milestone because after driving my truck around the block solo to test out my fortitude, we ventured for food at night with me driving and it went well.  The driving assessment was pretty good and so today, I drove to work to hit a couple meetings and catch up with some key clients.  Took off after about a six-hour day and now I can relax this afternoon and enjoy some PT exercises. 

Monday, October 1, 2012

1 October 2012

IV treatment today for platelets.

The arm "infection" is now being postulated to be some kind of fungus, possibly a ringworm thing.  No idea how that comes up on my forearm, but there it is.  Waiting for a doctor to come in and verify.

Hemoglobin at 8.5 (up from 7.7 earlier).  That seems like a mediocre increase considering the two units on Friday.  Rituxin is still messing with me I think.  Platelets at 6K... better than the typical 3 on a Monday.  Plenty of indicator sores in my mouth and dots on my legs.  I think the  yard work (minimal as it was) this weekend was a bit too much.

Solicited more details on the upcoming surgery from the main nurse Sandie.  Times, names, etc.  Hopefully she gets back with me soon.

 

28 September 2012

Today was supposed to be a platelet treatment, but it expanded.  Two units of red blood cells to address a low hemoglobin reading.   This is supposedly what's causing my unsteady head the past few days.  I'm glad this week was the last Rituxin treatment.  The whole thing took all day because we waited for the blood bank to come up with the blood.

There's also this spot forming on my arm that looks infected.  No idea what it is.  Theories abound, but possible skin infection of some kind.  "Just cover it and don't touch it"

The Fair has started but I'll stay away.  Too many germs I would think.

27 September 2012

Not much happening today other than being uncomfortable and tired and dizzy.  I targeted the day for some work, but failed to accomplish much along those lines.

Stanford U called.  It seems they cannot verify the cavernous malformation diagnosis from the previous look at the CT Scan. Too much blurring in the MRI images, so I need a new MRI in six weeks.  Looks like there are two options for that in Maui so I'll set them up at the one that isn't the hospital (assuming insurance likes that one of course).

Low hemoglobin has my head goofy, but tomorrow will address that with red cells supposedly.