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Walter
After ten months of trying to get approved, I started Humira tonight. Four doses with the injector pens, two in each thigh.

I received the Humira Wednesday in a box much larger than the actual medicine. It came in an insulated cooler with two sealed frozen cooling packs. I decided to wait until today for two reasons. Monday I had a ulcerative colitis (UC) flare. I started bleeding. The bleeding stopped yesterday. I also wanted to start the injections today to give me a day to recover, if necessary, for work Monday. Hopefully the plan will work better this time.

Wish me luck.

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I've been trying to get on a biologic since I was in the hospital for an Azathoprine Hypersensitivity Syndrome illness. I was told I would have started Humira before my 18 day hospital stay in July 2016 was over. That did not occur. Once released, the next available appointment was in the middle of October. October came and the appointment was postponed until late November. November came and it was postponed until December.

I went to the December appointment. The first words the doctor said to me was "How are you doing on Humira?". Fortunately I had enough restraint and didn't smack him. When I informed him the process for approval of Humira by the insurance company hadn't been started, he said he would look into it. An appointment for January was set.

At January's appointment I was still waiting. Nothing had been done on their end. Calls to their pre-authorization line were not returned. Kept checking with the insurance company. They had not received anything from the doctor's office.

February came and went without progress. During the February appointment, I told the doctor the pre-authorization line was a black hole and nothing was getting done. He said he would check into it.

March started with no change. Finally I was able to talk to someone on the pre-authorization line. They sent the prescription for pre-authorization. To the wrong pharmacy. Called both my insurance and the doctor's office. The forms finally were sent to the correct places. I was finally approved for Humira.

April rolls around. The specialty pharmacy had issues but I didn't hear from them. I called to check the status. They couldn't process the payment. How could they process a payment without talking to me? They had received information from the insurance's mail order pharmacy and tried billing my Health Saving Account (HSA) card. The limit set on that card was $500. They tried billing it, without asking, just under $4,500 (the remainder of my deductible). I gave them my account that had sufficient funds but it was declined due to a daily spending limit. While I called my bank for a temporary increase, we were disconnected. Since it was late, I had to start over the next day.

During that call, I discovered they were going to ship out the maintenance dose (two shots) rather than the starter kit dosage (six shots). The payment had been processed for the maintenance dose and taken out of my account. I put a hold on the delivery while I had my doctor submit the prescription for the starter kit. The pre-authorization line was responsive this time and sent the prescription the next day. To the wrong pharmacy. Again. Fortunately that pharmacy called to let me know. Another round of calls and the starter kit prescription was sent to the proper place. Things were finally looking up.

While waiting for the prescription to be processed, I had a Ulcerative Colitis flare, caught something, had uncontrollable diarrhea and ended up in the hospital for dehydration. After a week of many bags of saline, doses of anti-biotics and steroids, I was released from the hospital. My hands and feet were swollen. The first night at home, I had to go every hour. My hands returned to normal. Since I am tapering my steroid usage to prevent symptoms, my feet were still swollen. I had to purchase some compression socks to get my work shoes on my feet.

Once back at home, I was able to get a date for delivery of the starter kit. It is a few days away. Guess who woke up to an unpleasant surprise this morning. Yup, I did. What was the surprise? Rectal bleeding. Not just a little bit at the end when wiping. It isn't a huge amount of bright red blood but enough to catch my attention. More than a few ounces but less that a pint each of the four times I've gone so far today. It doesn't seem to be slowing down. Hopefully it will stop before the Humira arrives and or my next visit to the doctor later this week.

Edit: Just went again. It is approaching an alarming amount of blood in the bowl. I upped the amount of prednisone I took today. Hopefully tomorrow brings better news.

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In my last blogs I described a recent hospital stay. Had all the symptoms of a massive infection but testing didn't find anything. The doctors were baffled trying to figure out why I was sick. I conducted my own investigation.

Doctors have to look at all possibilities. I had the luxury of knowing nothing had changed im my environment other than stating Azathioprine (AZA) recently. I strongly suspected AZA was the underlying cause and started my research there.

One of the advantages of being in the hospital is when some medical sites see you are on a hospital domain, they grant access to articles that you normally have to pay to read. I haven't been able to recreate my steps I took to find information on Azathioprine Hypersensitivity Syndrome (AHS) once I was home. I have found two abstracts (here and here) that helped solidify my belief it was what triggered my illness.

Unfortunately AHS is more a diagnosis of exclusion of other possible illnesses rather than one that has a definitive diagnosis. This makes it harder to make the determination of AHS. Doctors have to look at all possibilities.

Azathioprine Hypersensitivity Syndrome is a very rare reaction to azathioprine that can be life threatening. It can cause diarrhea, low blood pressure, high fever, respirator distress, rashes and organ failure. The main component that stood out to me was how suddenly the symptoms occur when AZA was reintroduced after discontinuing use of a brief period. Most of the cases I discovered indicated taking one dose after stopping AZA resulted in a sudden and severe reaction that matched many of my symptoms.

I brought my theory to my doctors' attentions. They said it was plausible but stopped short of accepting it as the official diagnosis. I didn't press as I was well on the way toward getting better and they had responsibilities for their other patients.

I choose to believe it was AHS because I never felt right after starting AZA. Plus believing AHS was the cause enables me to sleep at night. Without that belief, the thought that the illness could return at any time, possibly with fatal consequences, is something I'd hate to deal with. I have enough going on in my life, I don't need that sword of Damocles hanging over my head. So I choose to believe AHS caused my illness and I well stay far away from AZA for the rest of my life. Hopefully a long one.

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Recapping my last blog, I have ulcerative colitus (UC).  I was having issues with flares and was prescribed azathioprine (AZA).  I took one dose on a Saturday after stopping it after a week.

Sometime during the night I started having chills.  I was shivering hard enough that it woke my wife.  Once the shivering subsided, I had to use the bathroom.  Multiple times.

After the second trip to the bathroom, I decided it might be a good idea to put on some Depends.  It was as I had a few accidents not too long later.  After the last trip, I didn't have the energy to put on the Depends.  I had to wake my wife to help.  I barely had the strength to crawl into bed in the hopes of getting some rest.  Unfortunately that didn't help.

About 7:00am Sunday morning I tried to get out of bed.  I couldn't.  I was extremely tired.  I decided to try and get more sleep until I realized I my breathing wasn't normal.  I felt I was hyperventilating.  Short, shallow breaths.  As much as I tried, I couldn't control my respiration.

A quick call to my in-laws and I headed to the emergency room (ER) of my local hospital.  My temperature was just under 104.  My blood pressure was very low.  They discovered I had a rash on my shoulders and arms.  They started by giving me an IV of saline.  I was quickly admitted to the intensive care unit (ICU) in the hospital.

I remember being pushed out of the ER but do not remember getting to my room in the ICU.  The next thing I do remember is waking up the following Thursday as they were taking out the intubation tube from my throat.  What happened during those missing four days I have had to piece together from the recollections from my parents, nurses and doctors.

I apparently decompensated to the point where I became belligerent and uncooperative.  I was sedated and placed on a respirator to regulate my breathing.  Tests revealed my white bloodcell count (WBC) was over 48,000.  The normal WBC is below 10,000.  Every indication suggested I had a massive infection of some sort. All the blood tests and cultures for infections came back normal.  They couldn't find anything.

While I was under, I was given several doses of anti-biotics along with several bags of saline IV's for my dehydration.  Unfortunately, no fluids were coming out from the catheter.  My kidneys had started to shut down.  I was also placed on oxygen because blood oxygen levels dropped below 90 percent.  How much below, I do not know.  I just know I was on 10 liters during that time.

Once I was removed from the sedation, several doctors interviewed me trying to find some clue as to what was wrong.  The answer wasn't forthcoming.

The next day my kidneys started working again.  I almost overfilled the bag collecting my urine between one check to the next.  Gradually over the next several days I was weened off the oxygen as my condition improved.  Other issues took a bit longer.

I was in the hospital for 18 days.  During that time I lost about 20 pounds.  Ordinarily that would have been good for me.  Unfortunately it was mostly muscle mass, not fat.  My legs were very weak.  Initially I couldn't walk for more than a few feet with assistance.  After several rehab sessions I was able to walk a few hundred feet with a cane before getting winded.  Eventually I was able to pass the evaluation tests allowing me to be released to go home.

While I was still in the hospital, one thing nagged at me.  I was told that for the first three or four days the doctors weren't sure if I would survive or not.  And they had absolutely no idea why I had gotten sick or what was wrong with me.  It was a scary, sobering thought that I could go home and have the same thing happen again.  Could it happen again?  Could I survive another occurrance if I did?

The doctors' initial diagnosis was toxic shock syndrome.  Then they thought it might be Sweet's syndrome but neither could explain all my symptoms.  Since I was getting better and they needed to put something down, they settled on toxic shock.  Since I Wanted to be able to sleep again and I had plenty of time, I tried to find something to explain what had happened to me.  While it took a lot of internet browsing, I found something that seemed to answer the question why I had gotten so sick so quickly.

Azathioprine Hypersensitivity Syndrome

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I have ulcerative colitus (UC).  UC is a chronic inflammation in the lining of the bowels.  UC is considered an auto-immune disease.  The immune system attacks the colon and large intestine.  Why?  They don't know why.

I was first diagnosed in 1988.  Until last year it had mostly been in remission using sulfasalazine.  When I flair in the past, the addition of a brief course of prednisone took care of the issue.  In 2016 it was no longer the case.

Prednisone was added in February 2016 .  Every time I tapered below a 30mg dose, my symptoms would return.  A colonoscopy in April revealed mu UC was "pan" meaning it was present in my entire large intestine.  It was time for a change.

In the middle of June 2016 I was prescribed a drug called azathioprine (AZA).  It is a medicine that is more commonly used to help prevent organ rejection in transplant patients.  It does this by suppressing the immune system.  The theory is by lowering the immune system, it give the bowels a chance to heal.

I started taking AZA for a week.  I was feeling ill and started losing control of my bowels.  I had a few accidents, thankfully none in a social setting.  I stopped taking AZA while I consulted my physician.  He assured me it was likely a co-incidence.  I decided to start again on a Saturday to give me time to recover for work if it was the AZA caused my issue.  I took one dose around 7:00pm and went to bed around 10:00pm.

That is when everything went south...

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I had an odd dream last night.  I dreamt that I was in a television sitcom.  I had a girlfriend played by Zooey Deschanel.  Zooey was the daughter of very rich parents.  Zooey's father is convinced that I was only after her for her money.  He hired Marg Helgenberger (playing herself) to "honey trap" me.

I'm at work in a retail setting selling clothes and accessories.  Apparently it is a store that Zooey's father owns.  When Marg comes into the store, she is wearing a halter top dress that clings to the curves of her body.  Marg start flirting with me, subtly at first but get more and more aggressive when it doesn't work.  Finally, the camera pans behind Marg as she reaches behind her neck and drops the top of her dress.  I gasp.

The next shot shows Marg and I on the ground with me on top.  Zooey's father jumps out with a video camera.

Zooey's Father:  Ah HA!  I knew you would be faithful to my daughter.  Now I have proof.

Marg:  It doesn't count.  He fainted at the sight of my breasts.  I get that a lot.

Marg composes herself and rolls me onto my back.  I'm carried into the break room where smelling salts are used to revive me.

Marg:  I like to fully immerse myself into the roles that I play.  Beside, you are kind of cute. I would have slept with you.  Let me know if you change your mind.

Marg says this as she kisses me on the cheek and places a slip of paper in my shirt pocket.  I pass out again.

As I regain my senses, Marg and Zooey's father are gone.  Zooey is there and she asks me what happened.  I relate the events to Zooey.

Me:  The strange part is how your father knew Marg is my list.

Zooey:  Your list?

Me:  You know, the list of celebrities you'd sleep with if you had the chance.  Others have come and gone from my list but Marg is essentially my list.

Zooey:  Sweetie, you could have, should have gone for it.  I wouldn't have minded.

Me:  I couldn't do that to you.  I wouldn't want the image of Marg and I in your head.  It is you that I love and I couldn't risk destroying what we have.

Zooey:  You are so sweet.

Zooey hugs me, whispers something into my ear and leaves.  A wide grin is seen on my face.  Fade to commercial.

As the show returns, the camera shows bodies writhing under a comforter,  A side shot seems to show someone atop another.  Finally the motion stops.  An overhead camera sees my head emerge from under the comforter.

Me:  That was fun.

Marg's head appears and rests on my chest.

Marg:  No, that was fantastic.

You can hear the audience express shock and disappointment with a loud "Ooh".  A few seconds later, Zooey's head appears from under the comforter.

Zooey to Marg:  Bet you didn't know you're on my list too.

Marg laughs and says "Glad I could help".

The audience erupts into cheers and laughter.  As the credits roll, we disappear back under the comforter.

I guess since I remembered part of it, I may have been consciously directing it a bit.  Okay, a lot.  Still it was an odd dream.  I wonder if there will be a sequel tonight...

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My birthday has come and gone. My goals have largely gone unrealized. I've not lost weight. I'm not in better shape. Marg Helgenberger didn't crash my birthday party. I did achieve one goal. Well, I will technically achieve the goal in about 5 years. I have a 2013 Dodge Dart in my possession.

It took me about 6 months to find the one I wanted on a lot within reasonable driving distance. Less than a week later it was home with me. Other than the car payments, I'm enjoying my Dart very much.

Having the Dart is helping to alleviate the disappointment of getting no love from Marg. When I started the twitter campaign a year ago, Marg wasn't on twitter. Not long after my last journal entry, Marg joined twitter. At the time I thought it was fortuitous. Turned out, not so much.

When I started the campaign I never really expected Marg to show up. If by some miracle she did, that would have been wonderful. I had what I thought would be a reasonable hope she might wish me a happy birthday. Alas it didn't happen. With her filming her new series earlier this year and her trip home to Nebraska this weekend, I don't think Marg noticed. My logical side knows this. My emotional side is temporarily disheartened.

I haven't decided what if anything, to do next. I know I don't need "validation" from Marg but is it too much to ask for a nod from someone you've looked up to for years? Should I give up my childish dream or continue to try? Hopefully I'll figure something out in the next month or so.

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One part of my plan has got exceedingly well.  I have avoided the evil scales with a passion.  The rest of the plan has been largely (pun intended) ignored.  I haven't lost any weight and have barely tweeted.  The only exercise I get is dragging myself out of bed in the morning.

Reflecting on these goals, I have decided to add another nigh unattainable goal to my dream list.  I've decided I want to get a new Dodge Dart Limited with the 1.4L MultiAir engine mated with the 6 speed manual transmission.  It would include the Premium package for the leather seats, a sunroof and the LED "Racetrack" taillights.  I do want the black interior but am torn on the exterior color.  I keep switching between Maximum Steel Metallic and Tungsten Metallic.  My wife likes the Citrus Peel Pearl Coat and the Header Orange is growing on me.

When my place changed health insurance providers (effective next year), they added an incentive to lower the cost of my premiums.  If I lower my BMI one point, they will reduce my bi-weekly premiums by $12.  That would result in a $312 yearly reduction in my rates.  If there is one thing I love, it is paying as little as possible for things I need.

Between needing to get healthy so I can afford the Dodge Dart and an incentive on my new health insurance plan, I need to start working toward my goals now.  My Schwinn Airdyne is waiting on me and expects to see me after a quick twitter post.  Wish me luck.

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Next April I will have been on earth for half a century.  50 years old.  Seems like just yesterday I was celebrating my 40th birthday.  As I take a hard look at myself, I have decided to undertake a couple of challenges.  The first challenge is to get into better shape.  After my heart attack in February 2010, I was doing well.  I weighed less than I had in several years and I had tons of energy.  Since early last year, I have been much more concerned with my wife's health than my own.  My recent annual physical opened my eyes.  I now weigh more than I did before my heart attack.  I have started a diet and slowly starting exercising.  For the time being, I will avoid the scale.  I don't want to become disheartened.

The second challenge is largely out of my hands.  I have started a twitter campaign to have Marg Helgenberger crash my 50th birthday party.  For the last three weeks I have tweeted to #marghelgenberger.  Since I haven't used twitter much in the past, I had no idea tweets to a hashtag disappear after a week.  Now it is a two pronged campaign, twitter and here.

Yes, I know it is a long shot.  An extremely long shot.  Marg likely does not have a twitter account.  Ditto for a Live Journal account.  But if I don't try, I'll never know.

Wish me luck.

I am screening all comments.  If you do comment and wish them to be public, let me know.

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Marg,

I am writing this on the evening of the airing of your final episode of CSI:  Crime Scene Investigation.  I haven't watched the episode yet nor have I watched the previous one.  I intend to watch them back to back sometime this weekend in order for me to savor them and your presence.  I'm not sure when I'll catch you next.

Thank you for (figuratively) spending time with me over the past 12 years on CSI.  It was comforting knowing I'd be seeing you on a semi-regular basis in this uncertain world.  I do feel a little sadness that you are leaving but I don't begrudge you or your decision to step away.  I know it was a difficult choice and that you postponed making that choice for a year or two, perhaps because you needed a bit of stability when your life was changing in more personal ways.  Perhaps not.  I digress.

From the fateful day I first spotted you on Ryan's Hope, you and your presence have captivated me.  It was strange that at a time I really didn't know who I was yet, I knew I instantly I was witnessing something truly remarkable.  When I think about that image as you were then, I am astounded how much better, more beautiful you are today.  You have redefined my sense of being.  I know greater things are possible beyond what I can comprehend at this moment in time.  I know I will comprehend those things at some point in time and know there are even greater things beyond them.  Heck, I might even be able to comprehend what I have just written someday.  :)

Thank you Marg for blessing me with your presence all these years.  I truly appreciate it and hope to see you in something soon that helps you grow.

*hugs*

Walter

p.s.  If you plan on attending the "Big Game" or the associated festivities next week in Indianapolis, rest easy.  I am, as Douglas Adams famously said, mostly harmless.  At any rate, I have no plans to attend the festivities.  Also, I do apologize for the letter published in the TV Guide a few years ago.  The edited version didn't accurately express the message I tried to convey.  I was seeking a legitimate print of the photo.  I had no idea they would publish the proof I provided them that I was a legitimate collector and not a reseller, let alone in the manner they did.  I still haven't gotten a print yet.  :(

I have set this journal entry to screen all comments.

EDIT: January 28th, 2012 - I can't believe I had to find out Marg got a star on the Hollywood Walk of Fame on eBay.  Now I have to see if I can find a copy of the Hollywood Reporter with the congratulation ads.

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