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Vascular ehlers-danlos, extensive DVT & Pulmonary Embolism's.

  • Surgeries

      3 April 2021
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    I have had 4 thrombolisi and thrombectomy procedures.

    What had consisted of them inserting the neck access called a sheth and a long ballon cathater as far as they could go down, they put a strong chemical into the sheth to bust up the clot so they can suck it out. Things were going better than expected until they hit a blockage, the part of the clot that had been there for so long and was the reason they were not confident that the surgery I should have had months ago was going to work. No matter how much chemical they put down it the main part of the clot which has established itself wouldn't budge. So they put in a stent and a new balloon cathater to stretch the stent and then they put a filter in to catch any big bits of clot that could break off and head for my lungs.

    They are going to go back in to retrieve the filter and try and do what every else they possibly can while they are in here such as a vein map so will see if there is going to be any changes from how I am now, I really don't want to live this way not being able to walk apart from going to the bathroom or kitchen and back and standing for short periods of time is a no no, I now have what's called 'chronic post thrombotic syndrome' and it makes my leg continuously swell and hurt like it's going to pop or split open and it's called "bursting pain". I am now on blood thinners for the rest of my life and stuck wearing custom compression garments on my right leg and the generic hospital ones on my left leg.

    Life as I knew it is gone and it was not the way I expected it to be.

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  • Surgeries

      3 April 2021
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    This week I have had 4 surgeries in 3 days. All lasting 3 hours or more, they went through the main vein in my neck that runs down the entire length of my body, I'm so thankful for all of the surgeons, specialist and the nurses at Waikato Hospital for giving me so much hope and treating me with so much respect.

    I'm going to for ever thankful to them. However...the medical team from Tauranga hospital not so much, the main lady consultant in charge of me had sent me home twice, once on standard blood thinner pills and then clexane injections the next time. Both times they called me to come back in as they missed things, what they kept missing was the extent of the dvt. It went from my calf muscle to just under my ribs! She didn't think that surgery was an option for me as it's reserved for life threatening cases, which I was exactly that and in the end have had to have 4 of those surgeries she said I wasn't eligible for. She didn't pass me onto the vascular team or any other specialist in the hospital as she knew it all and was handling it fine even when she undermined the head Haematologist in the country about the blood thinner I should be on which was the clexane injections from the start or even better, a hearing infusion, which I got as soon as I landed in the Waikato,

    There were so many things handled incorrectly that I'm now stuck with this for life as the surgeries are best done right away when the extensiveness is large, and it takes them one go to sort it out but for me like I said we're upto number 4 of this surgery I was not eligible for in her opinion, my leg would go down naturally on its on and it's not a big deal. Well boy was she wrong. If I hadn't have had different doctors when I went back in I would probably not be here right now as it was moving steadily towards my heart and lungs and there would have been no stopping it once it got there it would have be a pulmonary embolism like no other, like a wall of clot pushing behind it into the lungs where I would have instantly stopped breathing.

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  • DVT & PULMONARY EMBOLISMS CONTINUED....

      3 April 2021
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    Living in hospital is the most testing thing anyone can go through!! I went home thinking I was safe and everyywould be fine, just to get told to go back as they think they had missed the extent of the clot. Well did they what. I went back into hospital into what they call the apu, it was lucky as my "team" which was only general medicine had finished work for the day.

    I had other doctors come and see me. They ended up consulting with the surgeons in the hospital who then consulted with the vascular team and they contacted the head vascular surgeon in the country, I was then in the ct scanner having a full body CT with contrast die and then went onto a stretcher and put into the westpac helicopter and sent to Waikato Hospital, this is where my big journey begins......

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  • Back in hospital day 4 week 2

      21 March 2021
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    I have been back in hospital since Wednesday, one day after I got home. I was home for 12 hours max before I had to come back as the rivaroxaban treatment was failing and they found I didn't have enough INR in my blood which is the anticoagulant to help these clots stop getting bigger.

    I have been taught how to do my own clexean injections so I can look at going he tomorrow (Monday). I have learned to do them very well for someone who is very sqemish and couldn't even watch my bloods be done let alone injections into my stomach twice a day.

    I'm also on warfrin tablets but they too are not working so I'm unsure if the tablet forms of blood thinners just don't work on my weird body. So I may need to self inject for quite some time to make sure I don't have any new clots, so these previous clots don't grow or move towards my heart.

    It's been a very long two weeks and I can not wait to go home

    Thank you for keeping up with my journey ❤️💜

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  • Hospital stay

      17 March 2021
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    Well what a week it has been in Tauranga Hospital❤️💜

    I have Pulmonary Embolism's. They are small and have made their way through my heart and been pumped into the small viens right at the bottom of my lungs. Which was extremely fortunate, because if they were any bigger we would have had a life threatening situation (Still now at risk of some of the larger ones breaking off, heading for my heart & lungs) 🤕

    I have an extensive cluster of clots in my groin/thigh, the main one is the size of a small golf ball and around that one are both medium and small ones.

    I have clots on the top, inside and back of my thigh, a couple in behind my knees and a couple in my calf muscle. 😷

    I am on a double dose per day of blood thinners for the next two weeks and then i drop down to one dose per day for 6 months. They will then reassess the situation. There is a huge probability that I will be on them for life as this clotting is, like I mentioned above, very extensive. 😓

    My medication schedule was refined a few times over the course of this week. I started on a pill form of blood thinners and then had to have some injections of a different blood thinner into either side of my stomach to get it to the clots faster than the pills were in order to starve the clots and stop them from moving anywhere else within my body and now back to some tablets called rivaroxaban. 💊

    Once the blood thinner medication schedule was well refined, they then had to find a pain management plan with the most optimal ways to keep the pain at bay enough not to be in constant agony. They had to make sure I was "stable" enough to look at being able to discharge me. My home medication schedule was now sorted and I got discharged,

    So here I am one week to the day finally at home 🤗💖 and I must say that it felt like a month or more in there with all the tests and treatments I had to do and try out.

    The team I had which was made up of 4 different types of specialists were absolutely fantastic. They consolted with the "Head of House" (the hospitals main specialist team) and one of the best and the Top Haematologist in in NZ from the Waikato Hospital (DHB).

    They had given me the best possible care they collectively could and to ensure they were doing everything they possibly could to make aure I was safe at all times and to also make sure I would be safe if I was to go home.

    I have direct contact to them via phone & ambulance if there are any slight changes at all to ensure I could be seen and if all is fine be cleared to go home. Saves going through all the hassle of going back through via ambulance to the emergency department (They are super busy all the time).

    Thank you for taking the time to read this update, I will be adding more photos to my gallery and have been doing this frequently so please look out for any and all photo updates in the gallery.

    I want to once again say a huge thank you to all the beautiful people who have taken money out of your income and donated to my many needs.

    I know how expensive life and living costs are!! And to me this is huge no matter the size of the donation!!!

    All of them are such a huge blessing and it warms my heart so much that you care enough to go ahead and do that.

    My first purchase is a purple and black wheelchair that fits me and doesn't dig into my sides and legs, has a cushioned seat and is easy to push myself along. I'm so thankful to you all!

    To anyone reading this and following my journey that are thinking of donating I really appreciate you!!! Your donations all add up and gets me closer to having what I need so our one wage can go on our living costs,and everything else we need to cover on top of it all.

    Much love beautiful people 😍💞💖

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  • Day #4 of this hopsital stay

      13 March 2021
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    Hi everybody me I wanted to wait untill I knew what was going on before Abit more about the situation.

    I came in by ambulance on wednesday night (it's now Saturday lunch time), I was on the stretcher heading into the ambulance out on my street. The ambulance crew were amazing. I had what they suspected was a DVT (deep vien thrombosis) in my leg. Once arriving I was a medical spectacle, as my right leg and foot was (and still is) over 2 times the size of my left. I was taken to a part of the emergency department next to the doctors area with windows, they got my pain undercontrol as that's one of the reasons an bulance was rang and the fact I could not get off my couch and out of the house to go by car.

    I had a doplers scan where they immediately saw a large clot. I was moved to the APU (assessment planning unit) where I was looked after by some amazi nurses and a team of 4 different specialist. I had my bloods come back and my CRP (c reactive protein an inflammation marker) was raised so they wanted to keep me to do some repeat bloods in the morning as going home then coming back just wasn't an option with how large my leg was and how immobile I was (and still am). So in the middle of the night I was transferred up to the 2nd floor to a ward where I still am now. They doctor wasn't sure why my leg was still so swollen and how the pain is just not staying under control (as in the pains still there, nothing drastic).

    So they ordered a ultrasound scan of my leg. Well the scan showed a large clot blocking off my main vien to the leg but a hole cluster of them in the same and surrounding viens. She also found some in the back and top of my thingh and in my calf muscle. She then did my lungs and chest where she found a small clot PE (pulmonary embolism). I was taken right from there to the CT scanner to have my chest scanned (pulmonary system scan). I'm waiting for the doc to come see me to explain everything to me. The pulmonary embolism isn't enough to make it stop my breathing at this stage but I need to ring the buzzer as soon as I feel something.

    I have a leg and foot that feels like it's going to pop and the pain is undescribable, I can't move myself to go to the bathroom or anything. Am trapped to my bed for 95% of the day. I have to wait for the treatment options.

    I will keep you all updated on my blood clot journey. 💖

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  • Lung function test results

      4 March 2021
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    This is the latest of things to add to the growing list of health complications. (Lung function test results)

    Update on my archillies tendon rupture, they are taking the natural healing process due to my connective tissue issues and poor wound healing that comes with the surgery which could pull apart withing 5 weeks of the surgery so I'm living in a moon boot with no major weight bearing for the first 4 weeks. Then can slowly start physio to help strengthen it up again.

    Thank you for your love and strength and for following my journey as I navigate life with so many problems

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  • Thank you for your support so far

      1 March 2021
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    I want to say thank you to those who donated and shared my page so far 💖😊

    This week ahead I have my appointment with my oncologist regarding my leg and other connective tissue that has also had some damage due to this leg (upper thigh minor fibrous tears).

    I also have my general GP appointment where I will have my fortnightly b12 injections and get my next iron transfusion organised (either at my doc office or at the hospital).

    Coming up after that is my cardiologist appointment where I will have my echocardiogram done (I thought it was on the same day as my lung function test, but that was with my respitory specialist and the echo is with the cardiologist), I'm likely to have a holter monitor placed on my chest so I can be monitored over a set amount of time (will update with photos and the length it will be placed as well as pictures from the echocardiogram).

    And then on the 15th of March I have more x-rays of all angles of the chest as this pneumonia is taking its time to clear up.

    My lung function test went very well and I was able to be strong enough to give them all the data they need to asses if I have lung disease of some sort or if it's just my Mast Cells Activating causing an allergic reaction in my lungs which then turns into pneumonia, (something that will keep occuring and will be put on medication at my next appointment with my internal medicine specialist)

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