Friday, October 29, 2010

Winny Big Face

Epipens to The Rescue!

Today has been one of those days you have nightmares about.  You know the ones, where you have to go somewhere, but somehow you never get there and everything that can happen does.

I changed to cyclosporine to try to get better control of my hives.  I not only have hives but I can have life threatening angioedema, anaphylactic shock, and allergic asthma.  I had gone over a year without any real anaphylactic reactions, but I guess the change over in meds is not doing the trick.  The odds caught up with me in the afternoon.

I was hurrying around today. I had to vote at the courthouse because I won't be here election day. I had to take my brother to physical therapy. I needed to finish up packing my extra large suitcase (for 16 days away from home). I had to pick up my mother's medication and my thyroid medication refill. I had to get a blood test done early in the morning for Dr. Calm, the immunologist. I had to go to a Wal-Mart pharmacy in another town to get a new prescription for the altered dose of cyclosporine.  I had to coordinate the new prescription with Dr. Calm's office because they needed to see the test results before prescribing.  Somewhere in the chaos I lost my buzzer controller for The Headache. I needed to get a haircut and buy travel shampoo.  I had some laundry to finish.  I needed to be at work for a couple of hours to get ready for the trip.

When I finally got home at 4:00, I wasn't feeling too well.  My sweet sister brother and Mom helped me look for the missing buzzer controller because by now The Headache was deciding it didn't like doing all that stuff (which was not complete - I didn't have the new prescription for cyclosporine, or have my hair cut yet, or have my baggage packed, my laundry finished, or travel shampoo bought.)  I finally found the black little holder in my car UNDER the driver's seat.  Not quite sure how it got there, but today anything was possible. 

By 4:20 I had put a load of laundry in the washing machine, and sat down to see if I would feel better, because I was feeling sick at my stomach.  Pain started coming over me in waves - right in the stomach.  The pain was bad as I have had with pancreatitis.  I thought it might be pancreatitis.  I was determined to tough it out with no pain killers because it would interfere with the rest of my day, and I didn't have the time to be sick.  My sister thought I should go to the emergency room, but I told her no I think I can do this - I'll see if I can wait this pain out. My sister went home - but told me to call her if I needed a ride to the ER!

The pain continued for the 20 minutes, excruticating cramping burning boring pain.  At 4:40 my face was tingling and so were my hands.  My lips starting feeling numb, and all of a sudden my nose closed shut.  I looked in a mirror and my face was bright red and it was starting to swell.   As I went back down the hallway to the living room I started to feel faint to the point I felt I was going to fall.  I knew what this was - my blood pressure had dropped which meant my body was redistributing fluids away from my brain.  Anaphylaxis is the cause of this - blood and fluid rush to the areas with angioedema - my face, my hands and my feet.

Things started progressing rapidly.  I call my sister hoping she had made it home.  She was, and said it would take her about 15 minutes to get to my house to take me to the ER.  It would take an ambulance 20 minutes or more to get to my house so her transportion was quicker. 

After I hung up my hands turned bright red, and started swelling.  The swelling started up both arms and was halfway to the elbow.  My face was bad - puffy and BIG: big nose, big cheeks, big ears, big lips.  My big lips actually looked blue.  I felt the angioedema hit my vocal chords and then the allergic asthma wheezing started.  The stomach pain was terrible.

The wheezing got worse, so I decided to get my epipens out to see what can be done.  The advice of my Kansas City immunologist was never double guess this situation, always use the epipen - this is what they are designed for.  I carry two because of the speed and severity of my anaphylactic reactions makes one epipen insufficient.  I stuck one into my right thigh as I wheezed and wheezed, waited 10 seconds, pulled the epipen out.  Whew!  That needle was long and that needle hurt!  I  waited to see if my wheezing would go away, or the redness would disappear.  No luck, I hit my leg with epipen #2.   The shaking which was mild after epipen 1 got really strong with epipen 2 added to the mix. 

If this didn't help, it was 911 time but I really wanted to avoid that.  In my neighborhood out in the country they miss your road, they go too far, especially since Google maps has my house about a mile further down the road which is an empty pasture.  Just getting them TO your house is almost impossible even when you tell the dispatcher that they can't rely on interactive driving directions.

The wheezing subsided so the epipens had done the trick. I was glad I didn't have the added anxiety of trying to flag down an ambulance as it whizzed by the house. As my vocal chords and lungs started to get better, I took 50 mg of benedryl to hopefully calm down my hives, as they had started to pop up and the redness was extending over my entire body.  Then shaking got worse as the epinephrine spread to my extremities: good news!  The stomach pain which had been unbrearable also lessened, which to me says it was part of the reaction.  (Dr. Calm said that abdominal pain is a sign of possible systemic mastocytosis but for me the jury is still out on that diagnosis.)

At 5:00 pm my sister swung in the driveway.  I gathered my ID's, my purse, and cell phone and hopped in.  I was very nauseous, and had taken a zofran to help with the nausea but she was very kind and drove very slowly the 15 miles to the hospital.  My shakiness made it very hard to get in her van, and to get out at the emergency room.  Even driving slowly and waiting for a train at a railray crossing, we got to the ER at 5:20.  I told the clerk that I was having an allergic reaction and had already used 2 epipens.  They got me right back into a room - my sister said I was a sight - the overall red color of my face had turned into red and white stripes with my eyes looking out of big white circles.  My lips had returned to almost normal and my nose was back to where it should be breathing wise.

I tell my story to the staff as they try to get an IV kit in my veins.  They get one in first try, but it blew.  They start a second one, and it's a bit painful and leaky but it was getting something in my veins.  The ER doc came in, actually knew about mast cell disorders and thought I might have heriditary angioedema - I didn't even know there was such a beast.  Everyone marveled at my redness and where the redness was subsiding the welts.  A little different presentation from the norm I was told.  I was very very very shakey by now, and it was around 6:15.  My medical history is difficult to tell at best of times, but when your teeth are chattering it is hard to communicate pancreatic billiary sphincterotomy to someone.

The doc ordered solu-medrol, zantac, and 25 mg benedryl with IV fluids.  After about another 15 minutes these seem to be putting the stop to the hives, although I started getting a big hive right below the IV site.  Hoping like heck I'm not getting sensitive to saline flushes!! Many of the other hives fade a bit, but don't go away.   The lab tech can't get a vein for some blood tests for amylase and lipase after two tries, so she just takes a large lancet device and cuts a gash in the end of my finger and drips that into a very small tube.  First time I've had that blood collection technique used!

My sister in the meantime rushes to Wal-Mart since I will be on fluids waiting for the lab tests to get back, and Wal-Mart pharmacy (the closest pharmacy that carries cyclosporine) closes at 7:00 pm, and I HAVE to get the new prescription or I will not have enough at that dosage for 15 days.  She gets there and the pharmacists says Dr. Calm's office had called the prescription in at 2:30, BUT Dr. Calm's office called back at about 5:00 (when I was enroute to the ER) to say after reviewing my blood tests, the increase would not be needed, and I am to call them first thing in the morning.  I can't get a refill of the other script because it is not time yet for that according to my health insurer.  Augh!!!!!

In the meantime back in the ER,  I'm glad to find out my amylase and lipase are both on the low side.  This is good news because a few weeks ago my lipase was on the high side and perhaps a touch over normal.  At 7:30 the IV is stopped and the iv lines removed, and I get to go home.  My discharge nurse also has chronic hives, with a more classic presentation of clearly defined lumps on her arms.

The ER doc wanted to give me medrol pills also, but I said since I have to call Dr. Calm in the morning anyway I'll see what he says.  The ER doc also says I need to watch the hives tonight since they may rebound from the medications.  I understood, because the second day of this type of reaction is often worse than the first day.  My hives have been popping up everywhere for the last hour or so. I fear I will be having a miserable day traveling.

I am a bit worried about traveling because I don't want to have this type of reaction on a plane!  It can be dangerous for me to eat out when these hit, and I will be 15 days with eating out my main food option.  I guess I just must like living dangerously - on the edge!  I am still working on packing and laundry. I never got my hair cut OR bought shampoo.  Maybe I can find some hair care product somewhere that makes my witch hair better at the airport.  I have a layover in Atlanta - maybe I can get my haircut at the airport?

Will see what tomorrow brings.  I am so disappointed that I ended up in ER one more time!  I am also disappointed that illness has once again tried to derail me from my appointed rounds.  I definitely want to make sure I have an epipen with me at all times on this trip. 

This is an awfully wordy blow by blow account, but I think I am still pumped by all that epinephrine!!!


  1. What an experience. I'm glad you're okay!

    The finger gashing technique sounds uncomfortable, but I'm going to keep it in mind next time I'm getting stuck over and over and over and over.

  2. Steph: Still awake = too much epinephrine! Kinda like way way WAY too much caffeine.

    The finger gash really didn't hurt - not as much as them diving in and digging for a vein that runs away as soon as a needle heads for it.

  3. Dear Lord I pray that you protect Winny as she travels. That all aliments do not attack her at this time while away. Asking that the pain, hives her whole condition be restored to perfect heath in Jesus' name, amen.!

  4. Oh dear, what a night. I'm glad you are feeling better now, and hope that everything will stay closer to normal while you're traveling!

  5. WOW, have you ever thought about Wild Turkey in the IV. We love you dearly and pray that God will provide some healing and stability in your health.

  6. oh my! Winny I pray for your safe travels and your general well being. You are so brave!

  7. More hugs to you.... (((((Winny))))

  8. I am adding my prayers to all the others. Girl please be careful and take care of yourself!

  9. I'm so glad you are ok and were able to follow the good sense of your doctor to not second guess yourself. Take care of yourself; there is only one you.

  10. Emily: Better today, still hivey!

    Lester: I DO think Wild Turkey in the IV would be a great improvement! Do they come in margarita too?? Thanks for the prayers!

    Migrainista: I certainly don't feel brave. This one scared the peewaddins out of me!

    JBR: Thanks for the hugs!

    Princess OEATS: Thanks! Appreciate all the prayers! I think I'm gonna call a strike on my body - so it will behave!

    MP: Yep sometimes those docs know what they are talking about!!!

  11. Thanks for posting this blog. I pray that we never have to use our epipens with our son. Do you know of any other mastocytosis related blogs? I am making a list for a website my wife and I just started

  12. trec-r: Thanks for stopping by. I pray you never need to use an epipen on your son too! The doses for children are of course much smaller.

    There is also the TMS discussion group on Yahoo.

    Here's a list (and of course there is the mastocytosis society website)
    mastomama has mastocytosis, as do her two children - so she has the perspective of a patient AND a mom dealing with this illness!

  13. An addenda for anyone looking this up: I found that I had a delayed anaphylactic reaction to a hamburger I had eaten about 6 hours earlier. This is a sign (I know now) of a mammalian meat allergy.

    I may still have mastocytosis or MCAD, I may still have autoimmune urticaria, but I also have an immune response to "alpha-gal" a sugary carbohydrate present in most mammalian meat products. There is a simple blood test you can take to see if you have this allergy.

    I have a link on the left to the University of Virginia Website where they talk about this allergy. For me this explains the "idiopathic anaphylaxis" I kept experiencing!!!