15 Months on the Cortisol Pump: Before and After

I’ve had my hands so full with my pheo surgery and recovery, my one year “pumpiversary” came and went! It’s now been over 15 months since starting the cortisol pump.
So what’s changed?

Prior to the pump, I was taking a combination of oral steroids. As much as I researched, tweaked, and titrated the dosage, I still had a poor quality of life. I could do a few simple tasks around the house. On a good day, I could leave the house with help from my husband, and complete a quick errand such as the grocery store or library. After venturing out, I would be completely exhausted for the rest of the day. Possibly the next day too. I spent the majority of my time in bed, though I hardly slept at night. I had all the symptoms of low cortisol, while still getting many of the cushings-like side effects of too much cortisol. My adrenal insufficiency was very poorly controlled. I felt guilty I couldn’t help my husband around the house or take care of my kids. I was jealous of people that could walk, ride bikes, go out, shop, and basically lead normal lives. Mostly I felt like my family deserved better.

Before the pump, I was sick all the time.

 Looking back at photos, nearly every picture I took was from my bed. A picture of my window, my nightstand, my kids near the bed or in the bed with me. That was my limited experience of the world. Every little cold or illness going around, I would always catch. An illness that the rest of my family could kick in a couple of days, would bring me down for weeks, or send me to the hospital. I knew I couldn’t live the rest of my life like this. I was still recovering from over 6 months straight of respiratory illness when I finally started the cortisol pump. My steroid dosage the day before the pump was equivalent to 188mg of hydrocortisone. I saw an immediate decrease in my body’s steroid requirement. As soon as I started on the pump it was around 80mgs, then 75, and in a few months it was into the 60s. Currently 14 months later, I’m at 48mgs. That’s 140mgs less than when I started, and I’m still improving! The Cushing’s symptoms I once had, are completely gone, and it feels great!

The best part is how much this has changed my daily life. I rarely have sick days anymore. I still need to rest more than most people, but compared to my pre-pump life, I’m so much more active than before. I’ve accomplished so much in the past year! Those simple tasks I struggled with before, are hardly any problem at all. I can run several errands a day on most days, I can attend events, festivals, family gatherings, take my children to appointments, etc. I’ve traveled both domestically and internationally. I’ve been to Washington DC twice, had a major surgery and recovered smoothly. Not even a month ago, I flew to Canada solo, and pretty much had the best time ever. I’m actually out living and experiencing life now! I can’t tell you what a precious gift this is!

I don’t want to give anyone the wrong idea, the pump has not been a quick, easy fix. I didn’t start pumping and suddenly feel like Wonder Woman. I had to work on the delivery rates with zero help from an endocrinologist. I had to rebuild my body and the strength I lost being sick and sedentary. I had to make strict changes to my diet, learn what to eat and when to eat it. I’ve had to adapt to my condition, learn to plan and anticipate what my body needs in every situation, 24/7. Even so, there are still sometimes days my body forces me to rest, but thanks to my pump and a lot of hard work, I have less and less “forced rest days.”

This fall, my goal is to keep conditioning my body and regaining my strength. I did find a new endocrinologist locally who ordered the cortisol testing I need to help me fine tune my pump’s delivery rates. Hopefully with this data I can continue to see improvements in my quality of life while mitigating the side effects of steroids. I’ll also be going back to the National Institutes of Health to follow up on the pheo and MTC situation. With any luck, I’ll be confirmed pheo-free and they’ll have a plan for dealing with the medullary thyroid cancer.

So much has changed in 15 months, it is just unreal. I’m grateful for where I am now, and I’m optimistic for what the future holds. Slowly but surely, I’m reclaiming my life and its a wonderful feeling! Thank you to my friends and family that have given me emotional support on this journey!

đź’•Michelle

Advertisements

9 thoughts on “15 Months on the Cortisol Pump: Before and After

  1. I wish I could “love” this, like on Facebook! It’s so great to hear and see how much you’ve improved. I had a flashback one day a couple weeks ago. My friend Katie had her baby girl at Presby Flower Mound and when I walked into the postpartum ward I realized the last time I had been there was right after Lilah was born. And then I remembered how quickly things changed for you right from that day. I’m so glad the road has become less rocky for you, though it’s not necessarily a smooth ride yet. Can’t wait to see what the next year has in store for you!!

    Liked by 1 person

    • Thinking back, you were right there in the room when I first starting having the high blood pressure episodes, and everything just got so much scarier exponentially from there.

      This has all taught me so much about life and gratitude. I could never describe all that God has brought me through. It is beyond words!

      Like

  2. Hi Michelle, I was certainly happy and motivated after I read your blog…I just got started on a cortisol 13 days ago..The rate hasn’t been tweaked as yet as I am having challenges with doing 24 blood draws in 24hrs. This was requested by professor Hindmarsh who did the actual mm of using a cortisol pump in addison’s..I have a port buut no blood is coming from it. If it doesn’t work tomorrow then a temporary line will be put in my neck to get these tests done. I must stay that so far I am definitely feeling better since starting the pump. Best of luck to you

    Liked by 1 person

    • I’m so glad the pump is helping!

      Getting your cortisol curve is tough. I never could find a place to get a 24 hour profile. The best I could get at first was 3 random draws at a lab about a year ago. It provided a bit of helpful data, and that was good, but I would have liked more. I didn’t get another chance to test my rates until just recently. I have done 2 rounds of saliva cortisol testing (first try was ruined by the lab) and I just turned my latest set of tubes two days ago!

      Those neck lines can be pretty rough! Hopefully it won’t come to that, but in either case, I hope you get lots of useful data! I hope the pump continues to help you make improvements!

      Good luck and good health! 🙂

      Like

  3. I was diagnosed with adrenal insufficiency in February after years of health struggles and misdiagnosis (fibromyalgia most of the times). Reading this story feels like you either know me or I typed it. I’m still trying to figure out the dosage and my endo is not very helpful with that. Thank goodness for yall sharing your tips. She prescribed the steroids to take in the morning and that was it so by the end of the day I was crashing in a horrible way that’s when I started reading online and realizing that you have to mimic the natural way of your adrenal glands to realese cortisol and listen to your body which at times is so hard. I started tweaking the medication a little and have found better results, but not great results. I have found that my body doesn’t metabolize the medication the same way all the time so that’s another problem. Sometimes it takes 30 minutes to start working sometimes it takes a lot longer and sometimes I can’t even feel anything at all. I’m taking 5mg of prednisone and my endo freaks out every time I talk about having to double my dose because I’m sick. I get sick a lot so I feel in between listening to my body or my doctor. I’m going to talk with her about the pump and hopefully she is on board with it. Thank you for sharing your story even though I don’t wish anybody to have to live like this it’s good to know I’m not alone.

    Like

      • Margie, I wish I could, but I put myself on the pump. I never could find an endocrinologist willing to help. I researched it myself with some guidance from other cortisol pumpers. I bought my pump and supplies second hand, then I explained to my primary physician what I wanted to do, and showed her the research I had gathered. She prescribed the Solu-cortef I needed, but it was all up to me to program my pump and design my delivery schedule. No one helped me at all on this part, it was just research, a lot of math and trial and error.

        I would suggest searching for endocrinologists at your local teaching/University hospitals. Email the endocrinologists before making an appointment. Breifly summarize your medical conditions and ask them if they have any experience with the cortisol pump. This way you can get some idea of how helpful the doctor is going to be before wasting months waiting for an appointment.

        Good luck!! 🙂

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s