An adventure in Cushing's and stroke » medical

Sounding like a broken record

jennnigan — Sat, 20 Feb 2010 23:58:35 +0000

I love my endocrinologist. I really do. I had an appointment with him on Friday to get the results of my latest cortisol and thyroid function tests, as one final check up to see if I’m good to leave. Everything is fine – cortisol is 461 nmol/L (range 138-650) and ACTH is 6.1 nmol/L (range 1.4-8.1). So in exactly two weeks time, if everything goes according to plan, I will be in Vietnam.

The reason why I’m saying my endo is awesome this time is because at the end of the appointment, he wrote down the contact details of a friend of his in Vietnam. He said that if I have any free time, I should give him a call and say I’m a good friend of his [my endo's], and meet up with him. My endo told me to have a great year and to send him photos and emails, and to enjoy this year.

I know there are a lot of fantastic doctors out there who are great at their jobs, but in my own experience, and from what I’ve read and been told, there are very few doctors out there who go out of their way to know you as a person and treat you as a friend.

Cushing’s: A before and after shot

jennnigan — Fri, 22 Jan 2010 09:43:22 +0000

I was doing a search for my old workplace on Flickr, and came across a photo of me taken by an ex-colleague. It was taken on the 12th of November, 2008.

That was fifteen days before surgery.

And that was taken at Notes for Stroke, about ten and a half months after surgery.

I know that Cushing’s did some horrible things, but it feels like such a long time ago. I’d almost forgotten what it was like. I remember that it felt shit, but the actual details were something I don’t really think about anymore. It’s kind of fascinating now.

In other news, there are 41 days left in Sydney. I have an incredibly packed schedule for that month and a half, and many hours on the bike and at the gym. I’m getting the feeling that no matter how much I do, I will wish that I did more. My goal is to just be able to cycle what I’m supposed to without dying.

One year anniversary

jennnigan — Thu, 26 Nov 2009 23:58:42 +0000

One year ago today was the surgery to remove the pituitary microadenoma. I remember in the days leading up to the surgery, I was excited about it, because I didn’t have to do anything (all I had to do was lie there for a few hours while my neurosurgeon did his stuff), and most importantly, after it was over, Cushing’s would be over. Hopefully. And it was!

I know now that there were a few other obstacles to get past after the surgery, but that’s another anniversary in five days time, and today is simply one year of being Cushing’s free. Hooray!

Fun tests

jennnigan — Thu, 05 Nov 2009 07:39:45 +0000

I’ve stopped taking hydrocortisone for about two months. I did a blood test for cortisol and the 24 hour urine free cortisol test last month, and the results are awesome. My AM cortisol level was 384nmol/L (range is 138-650), and the 24 UFC result was 95nmol/L (range is 70-430; when I did this test last year the level was 4200).

I also had a bone density scan, because when I did it last year with Cushing’s, it was showing that I was beginning to get pre-osteoperosis. No Cushing’s and a year of calcium and vitamin D supplements later, it’s mainly normal. I’m still on the supplements for another year, but at least I’m off prescription drugs. I have an appointment on Tuesday with another specialist for other problems, because apparently shit happening never ends. Cortisol is looking good, though!

The best endocrinologist in the world

jennnigan — Mon, 02 Nov 2009 08:01:08 +0000

When I got out of hospital, I did some internet searching for all things Cushing’s related. I found the Cushing’s Help and Support forums. On there are lots of people who have been affected by Cushing’s, and it’s full of their stories and experiences. What struck me was the number of doctors out there who were, let’s just say, less than stellar. I know that there are different qualities and types of doctors out there, because I had a few of them.

I eventually found my current endocrinologist, and I love him. This post is a thank you to him, and a reminder to everyone out there having shitty experiences that there are some incredible doctors out there. There are lots of reasons why I love my endocrinologist, but I’m just going to give three here.

1. When I went to get an MRI, he gave me a letter to give to the MRI people saying I needed the scans urgently. He told me to not leave without the scans and to go and see him straightaway. Throughout the entire diagnostic process, he told me when to make appointments with him, regardless of his actual schedule.

2. When I got the test results for the inferior petrosal sinus sampling, they weren’t what we were expecting – they showed the ACTH coming from the right side of the pituitary gland, when the MRI scan showed the tumour on the left (or it might have been the other way around? I just know it was the wrong side). He called me after I left his office just to reassure me and tell me that things would be fine.

3. I saw him a week and a half ago with more problems. These were problems not within his specialty, so he wrote a name down on a piece of paper and said, “See this guy. You’ll like him. I’ll send you a referral letter if you need one”. I tracked down the guy, found that I did need a referral (which I suspected – I’ve never heard of a specialist not needing one), left him a message last Friday asking him to send me a referral letter. I received a referral letter today.

I love my endocrinologist for being reliable, patient, efficient, funny, kind and so willing to go above and beyond the call of duty to help his patients. I don’t know if I’ll stay in Sydney forever, but I think that no matter where I am, if I need an endo, I’m going to make a trip back just for him.

A post about hair

jennnigan — Tue, 27 Oct 2009 04:34:32 +0000

I washed my hair last night. Exciting, I know. The actual reason for this post, though, is how I’m fascinated by hair. Before the stroke, I used to wash my hair every night, because it would get very oily and gross very quickly. Last night I washed my hair after five nights of not washing it, and it wasn’t even that bad.

I remember after the stroke, and for a few months after it, my hair was shedding. Whenever I ran a hand through it, I would come away with a handful of hair. The doctors in the hospital didn’t know why, but my endo assured me that it was fine and I wouldn’t go bald. Now my hair doesn’t fall out any more than is normal, feels like it’s thicker than it used to be, and doesn’t get oily nearly as quickly as it used. Turns out the Cushing’s and stroke ended up having a few benefits!

Cushing’s, one year on

jennnigan — Fri, 23 Oct 2009 11:59:41 +0000

I saw my endo today, just to get my latest test results. When these tests were done, I had been off hydrocortisone for about two or three weeks. My AM cortisol level was 384 nmol/L (range is 138-650), and the 24 hour urine free cortisol test level was 95 nmol/L. This is pretty awesome, considering the last time I had the 24 UFC done, the levels were 4200. Cortisol normal, ACTH normal, but there are still things that are wrong, so I now have yet another doctor to see, yet another doctor to add to my set. I’m starting to wonder if there will ever be an end to medical problems.

In other news, my brain is going to Melbourne! Kind of. My neurosurgeon is going to give a presentation at a conference in Melbourne, and he wants to use me as a case study. He has all the scans that were done last year, and they were a hefty, intimidating pile of scans that I don’t really understand. But if I can continue being useful by being a medical freak, then cool.

Driving after a stroke

jennnigan — Sat, 17 Oct 2009 21:33:20 +0000

I drove by myself last night for the first time in over a year. It was a ten minute drive along a route that I did twice a day almost every day for four years during uni, so it’s one that I know quite well. It felt nice to get back into my car. The steering wheel felt looser than I remembered, but everything else was the same.

I don’t plan on driving that much (I didn’t even before the stroke), but it’s nice to know that if I need to, I can. Yesterday was also one month of not taking any hydrocortisone, and it’s been about ten and a half months since the stroke. It feels like a lot has happened since I left room D5C.

Stroke over, and an anniversary

jennnigan — Mon, 12 Oct 2009 08:00:03 +0000

I had a driving lesson today, and the instructor is letting me back on the road. Now that that is done, it means I have everything I had before the stroke, so the stroke is now over! Hooray!

And speaking of before the stroke, yesterday was exactly one year since the first appointment with my endo. On this day last year, I was still learning about Cushing’s, and in the middle of the numerous tests that would confirm Cushing’s. This time last year, I weighed a lot more, ate a lot more, and the only thing I knew about stroke was that Claudia’s grandmother from the Baby-Sitters Club had one.

The past year has been a very big learning experience, and it’s one that I wouldn’t change. The end of 2008 and the start of 2009 had a lot of shit things happen, but that’s okay, because you need rain for the flowers to grow.

Tips for a blood test

jennnigan — Tue, 06 Oct 2009 07:06:00 +0000

I used to really hate needles. I didn’t have my first blood test until I was a teenager, and I remember on one of the first few occasions, I bit my hand so hard to distract from the needle that I made myself bleed. I’m much better with needles now. There are a few memorable blood tests over the past year.

One was last October, when I was first being diagnosed with Cushing’s. The different tests my endo ordered needed about 15 tubes of blood. My veins weren’t fantastic – they were deep and hard to find, and they kept collapsing whenever the needle went in. I was jabbed 5 times, and they needed to collect a 16th tube because the first 15 weren’t all filled completely. At this time, because of the Cushing’s, my arms ended up being covered by bruises. It looked a bit like I had a very violent boyfriend (I didn’t).

I needed another blood test a day or two later, and went to another pathology clinic, and the woman was horrified by the bruising. She said the first two people (The 16 tubes ended up with two people collecting) were using the wrong needles. This lady only needed a few tubes, and she left only a tiny bruise, not one that spread much further than the entry point.

More recently, about three months ago, I needed a blood test that required 20 tubes of blood. This time, I didn’t have Cushing’s, and I also drank 1.7 litres of water beforehand and was wearing a long-sleeved top. The person collecting only needed to poke me once. I was quite impressed!

This morning, I had a blood test (only 5 tubes), and I was telling the person collecting about the 16 tube and the 20 tube experiences. She said the only two things you can really do to help are to drink water and keep warm.

And so, her tips, plus my own commentary/addition:

1. If you have Cushing’s, you will probably bruise. Sorry.
2. If you know you have difficult veins, or even if you don’t, drink lots of water beforehand. Lots!
3. Keep warm, especially your arms.
4. If possible, find someone good to do it. There are some people who, I’m sorry, are just not very good at their jobs. If you know who they are, don’t go to them.
5. I used to sing a song to my veins, to encourage them. It was the “Go, go blood!” song. And I would always praise my veins afterwards for being so good and for giving the lovely lady or man all that blood.