I ventured to the Zenpep website the other and found out a really cool thing they are doing. When you place an prescription order you can submit the lot and serial number once your enzymes come in and you can get free stuff! First of all you need to register for the Z-Points program here. Log in once you’re registered and submit your lot and serial number. I have 225 z-points currently and can redeem them for a $50 amazon gift card, Sodium Chloride Solution 7% – 60 vials, Nutra supplements, nebulizers and vitamins. It’s a really cool thing they are doing. My 3 month prescription costs $90, so it’s nice to have this incentive. Make’s it all worth it!
I haven’t been on pulmozyme in a long time! I haven’t been to a CF clinic in a long time either. Over the past few years I’ve put my CF outta site, outta mind. Well, it’s slowly catching up with me. It’s not crazy serious or anything but I need to get back it tip top condition in regards to my CF. My Doctor strongly
insisted recommended to get back on pulmozyme, when I went to Tulane a couple weeks ago. Even though my lungs aren’t my biggest issue I have with my CF, it is the number one killer in people with CF. I silently was freaking out because I knew I was going to pay a small fortune for the pulmozyme. I have insurance and it helps but I still knew my portion would be a pretty penny. I went to the pulmozyme website an low and behold was a discount copayment card. I signed up and within 3 days received my discount card in the mail. Once Walgreens pharmacy called to confirm my order I gave them this copayment card to use in addition to my insurance. I’ve crossed my fingers and waiting to hear my total. As soon as I find out the total I’ll update the post with it.
Check out this awesome resource to get discount pulmozyme!
Tuesday morning after I ate cereal I started to have my regular stomach pains (meaning I just might have a pancreatitis attack coming). My usual at home routine is to take my pain medicine and get into a hot bath. I did that and the pain slightly went down. Since I was working from home til noon I figured I’d be okay to work and went ahead got on the laptop and got to work. By 10:45 the pain was back and I repeated my usual procedure pain meds followed by a hot bath. It now wasn’t working and I called my dad for a ride to the ER.
We got to the ER at about 1-1:30 and it was a mad house. Two ambulances just came in and the waiting room was slapped full. After waiting about an hour and a half they brought me back and started fluids and pain meds. It’s wild that intravenous pain meds work so much better and faster than the pill form ones. About an hour or so later my enzyme results were in and they weren’t too good. Amylase was 1280 and lipase was 840. For those of you that are familiar with enzyme levels.. The normal amylase is 150 and lipase is 50.
Once admitted and in my room I couldn’t eat or drink anything but ice chips. By this time I was in pain about every 2-2 1/2 hours. That night was pretty rough and didn’t get much sleep. The next morning at about 5:00 am they took blood to recheck my enzyme levels again. I received the scary and unexpected results at about 8:00 am. My Amylase was 2436 and my lipase was 4250. When I found this out I started to freak out just a little. The Doctor was able to calm me down and explain that it’s common for enzyme levels to go up before they go down. That day was another only ice chips day as well. For supper I did get chicken broth though which was the best meal I’ve had in the past two days. That night was another sleepless night but I was taking my pain medicine a lot less frequently.The next morning my enzyme levels were Amylase 840 and lipase 450. That was a relief to me. That afternoon the doctor met with me and agreed I could go home and continue with at home treatments. I was so relieved I could go home!
Now I’m home and feeling better. I am still sore and tired but at least I’m at home. I will be getting my enzyme levels rechecked Friday and hope they are back to normal.
Well I got a call from my doctor today with my blood work results. They tested my Enzyme levels earlier this week to see if they were still elevated or have gotten back to normal.
Here are last weeks results:
This weeks results:
I’m sure glad I’m back to normal! No more broth/chicken soup! Semi-normal very low fat foods from now on.
This is an update to my Weekend Pancreatitis Attack
First let me start with a little history. I’m 32 years old with Cystic Fibrosis and for the most part pretty healthy. Ever since turning thirty I have started getting acute pancreatitis attacks. I’ve been to the ER probably 6-7 times in the past 2 years for pancreatitis. Pancreatitis is common in people with Cystic Fibrosis because thick sticky mucus can plug the pancreatic ducts and cause inflammation of the pancreas. When my pancreas is inflamed it causes the most severe pain I have ever experienced. Also, several doctors have told me it’s one of the most painful things a person can go through.
This weekend was supposed to be like any other weekend, but boy was I wrong. Saturday I woke up around 8am feeling a little pain in my stomach. I was hoping it was just hunger pains so for breakfast I had a couple of pieces of Ezekiel bread with a dab of strawberry jelly to see if that would help. Within an hour of eating the toast I was in full-blown pain feeling like someone was ripping out my guts with a meat hook. My usual routine for my pancreatitis attacks is take a Oxycontin or Hydromorphone and lay in a hot bath. Well this didn’t help so off to the ER I went.
I go through the usual routine of them thinking I’m a drug addict because I need fluids and major pain management. It’s somewhat understandable because the emergency rooms must see druggie’s day in and day out, but Saturday was different. After checking in I waited almost 2 hours in the waiting room while other people were able to walk right in and go to the back to see a doctor. By this time my pain medicine was wearing off and it pain increasing at a fast pace. I couldn’t think straight and started to get real nauseous. I pleaded with the receptionist to see if a bed was available during this time as well. Finally they call my name and to the back I go.
The nurse comes in to take my vitals, blood and ask the follow-up questions from when I checked in. “So I see your having stomach pains” she says. When I checked in I specifically told them acute pancreatitis. They didn’t write that down or take time to look at my history in that ER, so they wrote down stomach pain. Which explains why everyone went ahead of me while I waited in pain. By this time the pain was really kicking and I couldn’t even stay very still.
The emergency room doctor came in, I’ll call him Beetle Bailey. I preceded to give him my history, tell him about my specialist’s and so on. He thankfully gives me Dilaudid which wipes out the pain within five minutes. Thirty minutes or so Beetle Bailey comes back in to check on me and I ask how my enzyme levels were. Usually the higher levels the more painful it is. He decided not to check them since I have chronic pancreatitis. I am a little loopy but thinking “what the heck”? They’ve never done this before! I mention about getting a prescription for the weekend until I go to my primary doctor. He asks what non-narcotic medicine can I take for this? Again I’m thinking do you know anything about pancreatitis? I tell him Oxycontin and he gets my primary doctors name to verify. After he leaves my wife, mom and I talk about how much an idiot Beetle Bailey is. Shauna, my wife leaves a message for my primary doctor to let her know I was in the ER and I will be trying to see her on Monday.
By this time a new doctor comes in, we will call him Dr. Short man. He’s short, like five foot three inches short. He walks in all cocky and says “So you have pancreatitis? Do you think you can eat something yet?”. I look at him like he’s the stupidest doctor in the world and say “no, I probably will not be able to eat for a couple of days”. The only way to give your pancreas rest is not to eat and drinking clear liquids for several days. He mentions that the other doctor told him that I needed Oxycontin and he says “Yea, we can’t do that because we might get audited”. Again he asks for my primary doctors name for a fourth time to talk to her. I’m on my third bag of fluid, still can’t pee and aggravated. Shauna’s phone rings at the same time Beetle Baily comes in to tell us he can’t find any information on my primary doctor and she says “Hey that’s them calling now”. He then yells “I can’t talk to them on your phone” and he runs out the room. I’m now thinking I’m in the twilight zone. What the heck are wrong with these doctors? While Shauna is talking to my primary doctor they get a page from Beetle Baily. That’s pretty interesting that he couldn’t find my doctor and in less than two minutes he was able to find the number and page the doctor. When I finished my fourth bag of fluid I was finally able to get out of there. This was easily my worse experience at an emergency room. I hope I never have to see those two doctors again!
Thanks for reading my little rant. I hope it wasn’t to boring to you.