Life after Edgar 

It’s been 2 months since my adrenalectomy and since then a lot’s happened. I no longer have brain fog, headaches have gone, my energy levels are much higher, panic attacks have gone. No more heart palpitations or high blood pressure. I had my last appointment with my endocrinologist a couple of weeks ago and all my tests came back normal. My potassium is 4.1 without potassium pills, it wasn’t even that high pre-op with potassium pills. My kidneys are functioning perfectly and my renin and aldosterone levels are normal which is fantastic.

Recovering from surgery was not much fun as my moods were up and down due to changes in hormones while my remaining adrenal gland kicked in. The first week was the worst, I was sweating, had headaches,itching, pain from incision sites.. The second week was much better I was restricted with what I could lift but everything seemed much more manageable. Luckily the symptom I found one of the most distressing – brain fog disappeared as soon as I woke up from surgery. Peeing all night, shaking hands and the feeling of pressure in my head has also stopped. My itch attacks are a lot less frequent and less intense. I am less swollen and the bags under my eyes are disappearing.

More importantly I feel much more like myself once again. I can walk along the beach without having to stop to catch my breath, no more chest pain! Carrying things is easier because my muscles feel strong again! My vision has improved and I no longer suffer from dry eyes and intermittent blurred vision. My concentration is back and I am now more productive in my every day life, work and in my nursing studies. I no longer want to give up. Before my adrenalectomy I wasn’t confident that I could continue to hold down a job or have a future career in nursing, now I believe that pretty much anything is possible. I no longer live my life from my couch, I don’t need to rest after doing the dishes or grocery shopping or watering my garden. I can clean my 2 bedroom villa in one go and have energy left over afterwards, instead of having to break it down into small chunks. My body no longer hurts, everything has improved, my crippling anxiety has disappeared and I no longer freak out over tiny things like walking into a crowded room or walking my dogs down the street. I am relaxed and calm in my mind, finally!!!! It’s crazy how much having your hormones out of sync can play with your mind and your life!

Meeting the surgeon

Today I had an appointment with the endocrinologist surgeon, that Dr E referred me to, let’s call him Dr H. The appointment went very well. He knows his stuff, he even drew a couple of diagrams to explain what is happening in my body due to Conn’s syndrome, aka primary hyperaldosteronism, aka Edgar the adrenal tumour. He said it’s definitely not cancer because of the amount of hormones the tumour is putting out! 🙌 He answered all my questions and I felt like I can trust him to do this work in my body. Unfortunately, he said that I can’t see Edgar and my leftie in a jar, after he’s extracted them. However, he said he will take lots of photos of it for me during and after the procedure. I’m happy with that! When I had my endo surgery the Dr took photos and it was interesting to see what my insides look like. Dr H asked me the story of how I got a diagnosis. So I told him most of the story, but a way shorter version. He was empathetic that it hadn’t been diagnosed sooner and said ‘This could all have been sorted out back then’ (in 2011 when it first showed up in my blood). I told him that the urologist blamed my high BP on some medications I was on. I also explained that I had sought a second opinion from a different GP who backed my previous GP’s actions. He expressed frustration that they had not admitted that they didn’t know the answers and that they should’ve referred me elsewhere for further investigations. Yes, that is very true. I just said ‘Ah well, at least it’s being sorted now.’ He explained to me what was happening in my body with diagrams and that the treatment is surgery to remove the adrenal gland. Then he asked me what I’d like him to do about it and I said ‘I’d like you to take it out.’ He said ‘When?’ I replied ‘As soon as possible.’ He said ‘How about Wednesday?’ I said ‘Yes please, thanks so much!’ So in two sleeps time I will be getting an adrenalectomy, Edgar is going to be evicted, ‘don’t get too comfortable in there little buddy, you are the weakest link!’ 😂

Dr H explained that it will be done laparoscopically. Several incisions will be made in a line under my rib cage and they will take my adrenal out. I will be in hospital for 2 nights while my electrolytes and blood pressure stabilises. I should be able to go home after that and I will be able to drive straight away unless I’m still on pain killers. I don’t even need to fast, I can even eat breakfast at 8am the day of the surgery and there is no disgusting pico prep to drink!

My recovery should take 1 to 2 weeks and I’ll only need 2 weeks off work. I can’t wait to get this over and done with! After this surgery I will be cured (doctor’s words), no more hypertension, no more bp meds, no more potassium pills. Just good health hopefully and no more ops until I’m old and grey! 💁

AVS # 2 – Victory

AVS # 2 went much better than the first one but I left it feeling a little disappointed, I’ll get to why later. Firstly I’ll explain what happened on the day. Arrived at 7am, sat in the waiting room for about 2 hours. Name was called and I filled out some paper work and answered the registrar’s questions. Then the same old guy as last time collected a group of us and we walked to our various waiting areas. The first AVS I was led to a room with about 14 people in it waiting on chairs while they had bloods taken, signed consent forms, etc. This time I waited in a room with one other person and we had our own beds. My favourite nurse from the first AVS came and took my blood. She said she recognised my name on the chart and that they had all learnt a lot from my first AVS and had changed the procedures since then. Interesting…

A cleaner came into the room where my bed was and began dusting the medical equipment and TV above my bed, this triggered my allergies/asthma and I started to cough. I couldn’t stop coughing, nurse got me some ventolin and I stopped coughing – winning!

Before entering the operating room the nurse had trouble finding a vein in my my arm for an IV. She tried my left arm, then the other one and back to my left. She fiddled around for ages and she still couldn’t get it. Maybe I was dehydrated from fasting. She resorted to getting an ultrasound machine and used it to locate my vein (which hurt a bit – actually a lot) because it involved ultrasounding my arm on top of the needle inside my arm. What joy! I have a pretty strong stomach but I began to feel queasy at this point. Finally the IV was inserted and I asked for medication before my second AVS, using my panic attack during the first one as an excuse. 💁 Sometime before going into the OR Dr Jay, the biochemistry doctor, who would be analysing my blood (like he did the first AVS) came over and introduced himself. It was nice to put a face to the doctor I’d been emailing heaps before and after the last one.

After my IV line was in I was wheeled into the OR. I had drawn quite a crowd of medical professionals (around 12 of them) who wanted to observe my procedure as they were very interested in my complicated case. Lucky me, the human science project. I got a bit angry and lay there feeling sorry for myself because I felt stressed enough without a million people there for the show. Then I thought about it from their point of view and if I was a med or nursing student then I’d probably want to observe it too, because it is sort of interesting. They stayed in the room with the windows to my right and I couldn’t see them so it was like they weren’t even there. I was completely over the day already. Would they just hurry up and give me some meds and get this procedure over and done with?! A medical student came up to me and said ‘Hi Katie, I’m <such and such> do you understand the procedure you are having today or would you like me to explain it to you?’ I couldn’t help myself, I sarcastically replied a tad dramatically ‘Oh haven’t you heard?! I’m back! This AVS number 2. I’m quite familiar with the procedure, thank you.’ The whole OR erupted in laughter. I don’t know how he reacted and I hope he didn’t feel bad but it was pretty funny. Rule number 1 become familiar with the patient’s history before you speak to them. The nurse who did my IV came up to me and called me cheeky (fair call) then flushed my IV with saline solution. A male nurse was introduced to me and he prepared me for the procedure – disinfected the skin on both sides of my groin with swabs of blue liquid. Then they put the drape over my abdomen with two holes over my left and right sides of my groin. I started to freak out a little bit at this stage because I was anxious (the high aldosterone messes with my mind and causes extreme anxiety). I said to the nurse ‘Please don’t stick anything in there (groin) until I get some meds’ they assured me that they wouldn’t but they couldn’t administer any meds until Dr A arrived.

I lay there waiting for Dr A then I suddenly became super itchy. The disposable surgery underwear was driving me nuts. I was told not to move my arms (something about how there was expensive equipment on the table) when I tried to take them off myself. So I resorted to asking a nurse to take them off. I didn’t really care, I just wanted the itching to stop – I couldn’t be moving around during the procedure. I needed to be completely still to make sure none of my veins were damaged by the needle at the end of the wire. Plus I’ve had gynaecological surgery and procedures before, so whatevs! As long as they covered me up during and after the procedure, it was all good. The first nurse left the gigantic plastic undies half under my butt after asking if that was ok, which was fine until I started to itch again. I had to call a different nurse over and get her to pull them all the way out. Cringe but the relief from itching was worth it! 🤷🏼‍♀️

When Dr A arrived, they eventually gave me 2 different types of medications which made me feel super relaxed. I really liked Dr A he had a good sense of humour. This time when they inserted the catheter and moved it up my femoral vein it did not hurt. Bonus! 😛 There was no chest pain, hallelujah! Just like the first AVS a little pathology station was set up behind me, to the right (out of my field of vision) to analyse my blood on the spot. Again, it was the old routine of ‘Dr A taking blood out, giving it to nurse, nurse delivering it to blood station for analysis, nurse coming back and telling Dr A the result. I couldn’t feel any of this but I was listening to the Dr and the nurses. This went on and on (like the first one) and still no “Eureka we’ve got it moment’ after analysing each blood sample. I was so relaxed with the drugs (‘Magic Juice’) they gave me I barely registered this and I didn’t really care. Then they told me they were going to administer some Synacthen to activate my adrenal glands. They administered it and Dr A took a break while we waited 20 minutes for it to kick in. After 20 minutes Dr A came back and I was told to be careful not to sigh or yawn while he got the needle as close to my left adrenal cortex as he could. Finally he said ‘I’ve got the left’ (hell yeah!) and I said ‘yay!’ then had to pipe down and not speak as gently prompted to do so by Dr A. No moving, bad idea. The right was not as easy, I had to be careful not to breathe in too deeply, sigh or yawn, without asking, to avoid damaging my veins. I noticed how much I actually sigh and yawn during this time – heaps. There were a lot of samples taken but still there was no eureka moment. I felt upset because I really wanted both sides to be declared as successful on the day. I asked Dr A if we were back to square one again like last time and he said ‘No we will most likely get a much more meaningful result than the first AVS.’ I didn’t understand what had happened really because my cortisol was within normal range so why didn’t the on the spot test detect it?! So I emailed Dr Jay the biochemistry registrar, and asked questions.

He told me that because my cortisol was low side of normal sometimes it doesn’t get picked up by the instant test they do during the AVS, although it is quite possible they got it. The only thing left to do was wait for the results. They took 2 weeks to come back.

Well fast forward two weeks and I was told my AVS results by my endocrinologist, Dr E, last week. It was successful!! They successfully cannulated my left adrenal in 5 samples! Successfully cannulated my right in only 1 sample (after the synacthen was administered). The results showed it is my left one (with Edgar) causing all my issues! He said it was up there with the highest aldosterone levels he’d seen but not the highest he’s ever seen. Hooray! I was referred to an endocrine surgeon and got an appointment the following week.

Here’s my results. The left adrenal was successfully cannulated in attempt No. 1, 2, 3, 4 and 5. The right adrenal was only successfully cannulated in attempt 7 after synacthen was administered. There are two results per attempt – the peripheral result was from blood taken away from my adrenal glands, I think from my leg. Remember that in order to gauge whether or not the needle is in correct place (close enough to the adrenal cortex where aldosterone and cortisol is secreted) they compare the peripheral value of cortisol to the adrenal cortisol value. I think they use some sort of mathematical equation  as well, but I don’t know how it’s calculated. Anyway as you can see there is a massive difference between what my left and my right adrenal are pumping out! 🤓 < img src=”; class=”size-full wp-image-278″ height=”994″ width=”644″><

Informative journal article on primary aldosteronism (it’s complicated)

I can still see the irony that I have health problems related to the renin-angiotensin-aldosterone-system (otherwise known as ‘The RAAS’). Why is it ironic? It was the most misunderstood, confusing, pain in the butt topic we had to learn about in the anatomy unit Integrated Systems and Physiology (or ‘ISAP’). When I studied ISAP over a year ago the RAAS part of ISAP did my head in. I purposely learnt all the other topics back to front so I could avoid trying to comprehend The RAAS, with its sodium-potassium pumps and medical mumbo jumbo. Well it’s safe to say I pretty much understand it now, in more ways than one! I’ll update everyone about Wednesday’s AVS when I’ve got the time to write about it properly. It went better than the last time, but still not all that smoothly, however I didn’t mind because they gave me magic juice in my IV this time. 🤗

Life and all its hurdles

Just when you think things can’t get any worse, they just might. I took my beloved Staffordshire bull terrier Stella to the vet yesterday to get a lump on her chest checked out. The vet aspirated it and sent it off to the lab for testing 🔬. Then rang me with the results yesterday afternoon. It’s a malignant mast cell tumour. In other words it’s cancerous. We are tumour buddies, except mine is benign and hers is not. The vet also told me it is the least aggressive type of mast cell tumour but it still needs to be removed within the next two months. Somehow I will make that happen, I just need to figure out how to afford it. She’s not going anywhere, they’ll get it removed and she’ll be fine, just gotta remove it. .

AVS confirmed

Got my blood test results back today and both my potassium and cortisol are high enough to go ahead with the AVS on Wednesday. I’m not really sure how I’m feeling about it apart from being tired of thinking about it and sick of having to deal with it. Yesterday I made the decision to withdraw from my prac unit so I will only be doing one unit this semester. Which will set graduation back another 6 months, or a year in total (if you count last semester) but I need to focus on getting well so it’s the correct decision for me right now. Hopefully getting well actually occurs, I’m at the point where I’ve been so unwell for so long (most of my life) that I’m afraid it might always be like this. I have so much I want to achieve in my life in order to be successful. I just need this one piece of the puzzle to fall into place. AVS then two week wait for the result and some answers hopefully.

Polyuria = lots of pee (I’m a nursing student – sorry, not sorry🚽)

How can a person pee so much at night when they should be sleeping and pee so little during the day? Primary hyperaldosteronism. I have to keep getting up to pee all night long, 6pm onwards – boom, all of the pee! 💥 I probably get up 6-7 times a night. It must drive my neighbours nuts! I just checked SONIA and my prac dates are up – my first 10 day community prac (if I decide to stay enrolled in my prac unit this semester, decision pending) begins on the 26th of February to the 11th of march. Oh what wonderful timing! 😜I am due to get my results for AVS number 2 on the 21st of February, what if surgery is needed? Do I write an email to the clinical office saying I need a later prac date because I might be needing surgery? Or do I wait for the S word to be mentioned, hopefully on the 21st, which is sort of late notice to pull out of prac. Or do I just pull out of my prac unit all together so that I don’t have to get frustrated with the uncertainty of it all and the effect it’s having on my prac components? My second prac is a 5 day aged care prac, from the 16th of April to the 22nd. Or should you just hang in there, my first prac is so close to my house compared to ones I’ve had in the past. Hmmmm decisions, decisions, so many decisions…..

Mornings are my favourite

Good morning – Mornings are my favourite because I usually wake up feeling a lot better than I did the day before. This puts me in a very good mood and I start feeling hopeful that maybe today will be a ‘well’ day or rather a ‘weller’ day than usual (as well as you can get with an adrenal tumour churning out excessive amounts of aldosterone like there is no tomorow). Anyway this always makes me annoyingly cheerful so I get up make breakfast feeling like I am invincible and nothing can stop me! I have my morning medications and eat my breakfast with enthusiasm – today will be a good day. It always is a good day to begin with….

Until after breakfast something happens, usually around 1 hour after eating my mood and how well I feel starts to go down hill, with it comes the realisation that I am not ten foot tall and bulletproof and this might be a harder day than I first anticipated. It is hard to explain how I feel I guess the best way to describe it would be wired with anxiety and it sort of feels like all of the energy has been sucked out of my body. Clarity of thought has been replaced with slower than usual thought processes and a sort of fogginess appears in my brain. Perhaps the reason this occurs is my body’s reaction to sodium, the excess aldosterone secreted by Edgar makes my RAAS (renin-angiotensin-aldosterone-system) do weird things. Aldosterone makes the body hold onto sodium/salt and the sodium holds onto water. Increased water in the blood = increased blood volume – leading to increased blood pressure, more of the blood-more pressure on your blood vessels, go figure. My mood drops from perfectly happy, cruisy, good morning mood to super anxious. My heart starts to beat fast, I sweat a lot (although for all you other PHA sufferers I have found the perfect solution for that – dry shampoo applied to the roots of clean, dry hair). It’s my secret weapon so I don’t end up looking like a drowned rat by the end of the day. This feeling gets worse as the day goes on. Repeat after lunch, feel better temporarily, then feel worse. By 3pm I am almost falling asleep and can barely drive my car home in a straight line. So, I did some experiments and it turns out I still feel pretty crap but a little better when I don’t eat or drink as much. The problem with that is if you play around too much with your salt/food/water intake it can affect the results of the AVS so I have to try to eat and drink normally :/

I was going to do a post on how the RAAS works in a normal person, without Primary Hyperaldosteronism (PHA) and compare it to mine but I will leave that for another day as I’ve got a Literature Review to write. My brain is working quite well at the moment, which I intend to take full advantage of. I got my hair done earlier on today by a lovely friend of mine and I wonder if it has given me the strength to persevere with my essay! (thanks Ronnie!) friendship vitamins