No More Excuses

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So Many of you know that I have had illness for most of my life.
I am pleased to announce that I have been given the “ALL CLEAR” by my doctor last week. Although, My doctor told me I’m not allowed contact sports which was a big “duh” for me (ha ha).
The problem with being so tired and ill for so long is that I am no longer “fit” (to put it nicely), and all though I’m not obese, I am definitely not in shape.
I have noticed ever since I have recovered from the “spleen-attack”, and the spleen has shrunk by a third – I have recovered more energy than I have ever had before.
I do have minor surgeries in the coming years and tests that involve being put to sleep every year but I am amazed at how much physical resilience I have now and know it would only get better if I was in shape.
I have no more physical reasons why I cannot workout and I’ve been told that as long as I take care of my liver (which includes getting in shape) I could live as long as anyone else despite the physical stress my body has gone through. So I am motivated!

What’s the problem? Now it’s mental. I have been so used to being “too tired” or struggling on the brink of death (little did I realize how sick I was all this time), that my brain is trying to give me more excuses. So I’m here to say that YES! I am doing this, and I plan to work through all those excuses and replacing them with more positive and encouraging thoughts to get through this. So WATCH THIS SPACE – I will be monitoring my progress – I’m holding myself accountable with telling you all my plans. I have to back up what I say!!
(P.S. Okay – my only physical excuse is that I have had a cold for the last week but I’m finally starting to kick that and get more active again – heh heh).

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So I have been quiet lately because I have been quite upset thinking that I may need to go through another procedure. I have been undergoing test after test (I have another one next week) but thankfully the doctors have had a chat and decided that I would probably be best to be left alone.

I have a test scheduled next Thursday and my doctor mentioned that the results would be back in time for “the 19th”. I said “What happens on the 19th?” He says “oh we (and he mentioned some of the best doctors I know) have a fortnightly meeting…  (silence…) where we meet and discuss patients (silence….) like you…. (silence…) you probably have felt your years burning”.
Well… let just say I’m not sure where I am supposed to be in life as my life is constantly interrupted with my health surprises and abnormalities but I definitely feel like a super rare and valuable Pokemon collector card when it comes to doctors.

I nearly shared the story of having an ultrasound on the entry sight right after a procedure and the ultrasound technician said she needed a radiologist in the room to double check they have the scans they needed. As the radiologist came in he asked what I had gone through … I said “Spleenic Artery Aneurysm coiling”… he said “no, you must be mistaken what did you have?” so I said it again… Then he said “no, you must mean brain aneurysm or heart aneurysm?” before I could respond he said “WAIT!! You’re that girl!! I heard about you!!” suddenly there was 50 questions coming my way “How do you feel, can you feel the coiling? Do you know it’s there?” I couldn’t get a word in…

The funny thing is… I have felt quite frustrated in my life about all this health stuff… and yet… I have a little giggle to myself that if I am here for nothing else… at least I can be a medical “rarity”. I usually make it a mission to have the very serious doctors with a smile on their face or in laughter by the time I leave their room.

Today, I was quite relieved when told I did not need another procedure despite the findings (of yet again new internal strange things) – and my specialist who has seen me for at least 6 years said: “as usual, it’s always a pleasure to speak with you”. and I smiled and answered cheekily “I know”.

Hey… I got to be confident about something in life – if nothing else… The doctors who like a challenge – love me and talk about me often. That’s better than feeling sorry for yourself and not knowing why the heck you are still alive.

P.S. did a 5k walk on Sunday – with all the new energy I have from my 1/3 of my spleen dying. Have been walking a minimum of 5K every day and determined to feel healthy again no matter what is happening – also – it rained THE WHOLE TIME…
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Looking for something rare like rare Pokemon cards? Find them here

Health update: Energy and Excitement…

 

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I know it’s not the day I use to do a health update but I’m kind of excited.
I had no clue how much I struggled before. I just thought that I had to focus on what I could do than what I can’t. BUT Who knew losing a 30% of your 3-times-larger than normal spleen could make you feel so good?

I kept getting told by my doctors that if I did “survive” this all, that I would feel better than I have in years – possibly ever. Well, of course there is recovery of procedures to do and such…  and I had been struggling with energy through recovery.

However – I am now feeling less weight internally –  and able to sleep on my left side again (it had been months). I find that my mind feels lighter in the sense that I actually feel like I can accomplish more. To me there is so much proof in that if your body isn’t working right, there is more difficulty with feeling focused and motivated in your thoughts. It definitely causes the feeling of being overwhelmed. This is part of the reason why I started this blog, to use it as a source of encouragement and positivity for those that may have extra challenges.

I have a cold right now, the first I have had in a long time. I’m kind of excited by having my first cold with a nearly normal white blood cell count! It sounds weird I know, but when your neutrophils drop below 1 on the blood test and you are told to “stay inside” on those occasions, well… it can affect you mentally as well as physically. So knowing that I’m almost back to normal blood cell counts like other people has made me feel more optimistic about fighting this cold. I’m a weird one but I said to my husband “I can’t wait to see what this level of white blood cells can do!! They are going to kick some butt.” (Ahh… one of my mottos is that if you don’t deal with health issues with a sense of humor you become mentally unhealthy).

My circulation is so much better at the moment. I definitely feel less sluggish and am motivated to do more exercise. It doesn’t hurt to jump around or dance with this extra-large organ inside of me anymore. To be honest – I may need another procedure in a couple of years that would possibly cause further spleen death. Since my Spleen has gone from 3 times a normal size spleen to twice the size – I think I can afford another 30% off… but that can wait though.

It does prove one thing – that nearly 37 years of struggling there is still hope that technology, doctors, investigations, procedures and FAITH can actually get you to a point where you feel better than you have – ever. Even while having a cold! Keep going…

 

Tuesday Health check: A Slam Dunk?

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Well, my procedure did not go as planned but in a good way.  My doctor used coil he had never used before to fix my splenic artery aneurysm (which other radiologists don’t believe me… “you mean brain aneurysm? heart Aneurysm??” “No, Splenic artery Aneurysm” – in which they then say “oh you’re that girl I heard about”. “I’m as rare as a unicorn” I tell myself).
My doctor looked nervous – the whole team looked nervous. Couldn’t barely crack a smile even with my pre-surgery jokes I was telling (Trust me, it was comedy gold to anyone else that wasn’t under pressure).
He ended the procedure early and called my husband to tell him how it went better than expected.

The funny thing is – a week before the procedure my doctor called me in to have a consultation about how difficult this procedure was going to be. It was not going to be a “slam dunk” is what he kept saying. He also told me they had planned for minimum 6 different scenarios… none of them being “a slam dunk”. 

As soon as I woke up and heard how it went extremely well and easy from the nurses (doctor went into another procedure), and my husband who also explained everything to me that was relayed over the phone.

I knew that as soon as I saw my doctor I had one thing to say to him:
“So, it was kind of a slam dunk huh?”

He then said “Well.. it was as if we were standing with our backs towards the hoop, and we just throw the ball blindly over our heads and we somehow got the ball in”. Is how he explained (and demonstrated) it.

I know this post might not get many hits. It’s not about that. I  hope this reaches those that have something super rare – something possibly like a splenic artery aneurysm – with all the complications I had (portal vein hypertension due to old clot, dangerous varices, hypersplenism etc etc etc). I had a hard time searching and reseaching positive outcomes of people like me… because there is very little out there. Why? To have a splenic artery aneurysm is literally less than a tenth of a percent of aneurysms – and very rarely someone of my age (I got lucky I suppose). I want those that don’t know what to expect, or even when your doctor seems nervous because he/she doesn’t know what to expect… that you can find someone out there that has had this. That it doesn’t have to be as lonely of a walk. I know for some – a tenth of a percent of aneurysms is actually a high percentage for the rarities that they have with their health. BUT I am writing this not for the majority -I’m writing this for those out there who have doctors who are doing everything they can to understand and figure out how to treat their issue.

Sometimes – no matter how the doctors tell you, “it’s not a slam dunk” and even the months of warnings I received about how hard it would be to survive – that it could actually go better than expected –
You could get that slam dunk! Stay hopeful!!
Sometimes miracles happen.

(P.S. This post means I am back on board with posting more regularly again – thanks for being patient).

Princess of the ward

well, I was out of my procedure and recovering thinking about my next blog sharing what an amazing success it was (better than the best case scenario planned for). I felt so blessed because of the unpredicted outcome.

However yesterday afternoon I suddenly got nauseous and and felt pressure in my chest. It turns out that my body decided I didn’t get enough attention and my spleen decided to cause a bit of drama and decide to kill itself a little bit (aka a splenic infarct). I didn’t feel pain at first, just sick, dizzy and pressure. However overnight the nausea and pain has increased just to remind me that my spleen isn’t joking.

Doc came by this morning to confirm I’m staying for a while. In order to make myself smile after a difficult night I decided to take a picture of myself with an obvious filter – a crown.

I’ve deemed myself princess of this place (not sure if the nurses have figured out they are in the presence of royalty yet…) 😉

Hope your night was better than mine. Keep smiling! From Her Royal Highness, Princess Jenny.

Tuesday: A little more hope…

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So, It’s been a while as I have been busy with being at the hospital for tests and consultations. I had an abdominal angiogram on Monday and the doctors have consulted one more time.
Apparently there was seen “a way” to get through my torturous splenic Artery which will be difficult but it is “doable”. Still high risk, with a surgeon on standby if something goes wrong but as I’ve been told, my chances have gotten a bit better. Still risky but better.
I have been told I have another week (and a bit) before surgery when they expect all the “parts to come in” from around the world to deal with the aneurysm and enlarged spleen. The Aneurysm is bigger than originally measured and the size of the spleen is quite impressive. I have been exhausted from all the tests and appointments and am glad to have a little bit of rest until it is set in stone.
I’m feeling a little more hopeful though. It’s good to know that your chances have gotten better and more than one doctor being consulted believes you have a chance now.
I have been asked “Why are you so happy”.
I am someone that is quite real with myself. I have had all the anger and depression I can have in the last few weeks and now I realize that I cannot control the situation. There is nothing more I can do to make this go well. I have too just accept what it is. Acceptance of your situation is next to happiness and closer to hopefulness!
Hope your weeks have been better than mine.
Jen

So I’m ready to talk…

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So, I have been laying low lately as I feel like I have gone through some depression lately feeling overwhelmed with the reality that lays before me. I am ready to explain and it’s super personal but maybe someone out there can relate in some weird way.
So, There is still the incident in which this was all discovered in which I have yet to write a blog post about but 9 months ago I was in a an accident which caused me to be dragged a good 40 metres (roughly 130 feet).
As a result they scanned my internal organs. I already knew that I had an enlarged spleen. Which is why I alerted them to doing a scan. The other was a bit of a shock. It seems that my portal vein was blocked when I was younger when I had a different procedure. The clot stayed there long enough to form what is called an “Occlusion”. Basically – it’s never going to change, it’s become a part of my body – and the body miraculously compensates by forming smaller vessels to get around the clot and get to the organs they need to get to. These vessels are called Varices. However the real kicker is a pretty large aneuryism (and two smaller ones) that they found on my splenic Artery. So… yes.
After much discussion on what to do (and I still don’t know everything), the rough overview is that I have to do 2 procedures (usually they do just the one) where they will “Partially embolize” something somewhere to lesson the blood flow through the varices. The doctor who would be doing the embolizing (I have been told he is “world renowned”) says that he cannot fully embolize – and that they will have to remove the spleen. I do not know fully what this means – but I do know they are worried about rupture of 3 (3!!) things and that I am a “ticking time bomb” as put frankly by my surgeon. However they want to meet with me again and explain EVERYTHING but also to explain to me how high risk this really is (joy – I get it, I could die – and it’s a good chance I might), but the alternative is that my life will probably end when something ruptures because I’d be lucky to get to the hospital in time, with doctors that are familiar with my history, and/or have the right skills needed to do such a specific job. So I really have no choice.

The spleen is getting bigger, and the aneurysm will only get bigger – until one day there will be rupture.
The funny thing is, when scans were first done, I casually mentioned that I might need to have surgery on my spleen (without even meeting with a surgeon yet) and the two people I told didn’t ask me WHY… just told me how I could fix my spleen with herbs.

Yes… with herbs.

I love alternative medicine, but please do not offer it until you know the details – and even then… if you offer it to me, I will just give you the number of my doctor and say “why don’t you consult with my doctor on what to do with me?”

Also, when do people offer solutions without listening??  oh that’s right… ALL. THE. TIME. So this is what keeps me from telling a lot of people that I know… the offering of herbs instead of actually listening.

So… I keep thinking I should prepare for “recovery” but I realize that I need to prepare for “never coming back” too. Which really sucks. Not sure how you can explain that to your children?
I don’t plan on explaining it to them too much until I have a date of surgery which I should know by next week. Also, I don’t want to worry them too far in advance.. ugh. Such a balance.

If I do get out of here though – I plan on getting me a I HEART GUTS spleen.

More about my dragging from a car and the minor surgery I had today in tomorrow’s blog.

Take care and remember to laugh!