Our Scleroderma Journey || Vlog 2 June 2018 – Vancouver General Hospital

Our Scleroderma Journey || Vlog 2 June 2018 – Vancouver General Hospital


Hello everyone. So have some fun not so fun updates. Last week I did my echocardiogram and I had
my EMG which the EMG was terrible for someone who doesn’t like needles they put electrodes
on different muscle groups and then fire a needle in there to sort of test the electrical
or the current connection between your brain and your muscle to see if you have any muscular
diseases thankfully I didn’t just showing signs of wear and tear from the Systemic Sclerosis. It’s friday, we were supposed to be leaving
in 3 days to Calgary for the scleroderma clinic that has been cancelled because my tests show
that my lungs have gone into terrible shape so we are looking at potentially having pulmonary
hypertension which is also causing stress on my right ventricle of my heart so we are
now leaving Kelowna and right now heading to St Paul’s hospital in Vancouver To go to
there basically see their experts because they don’t have the right equipment to properly
test and diagnose my lung issues in Kelowna so checking in today. I don’t know how long I’m going to be there
probably through my Birthday. That’ll be fun and I’ll let you know how things
go. Well we’re back in the hospital so day one
first few hours of being at St. Paul’s in Vancouver. I have to have a number of tests done to figure
out what’s going on with my heart and my lungs so I’m going to have to do a heart catheterization
which basically they go in though my leg through a vein to measure the pressure inside my heart,
colonoscopy, high res ct scan of my lungs and heart, bone marrow biopsy to make sure
that we don’t have any underlying cancer, I might be at Vancouver General Hospital for
they said it could be a couple weeks just while they figure that out. So road start I’ve had one blood test bout
to have another I’ve had about seven doctors in here poking and prodding. So it’s been it’s been a long day. They did a high res ct scan of my heart and
lungs yesterday we are waiting for a transfer to VGH for the pulmonary hypertension clinic. I’m trying to be quiet because there’s four
other people in the room right now. This has been really emotionally hard. So I have a phobia of needles, I mean most
people say they do and I do and I manage it considering I’m getting poked multiple times
a day just for checking up and such so but all these tests and the unknown and it’s really
scary because these symptoms are likely caused by the scleroderma so it’s not like someone
who’s in here dealing with just a heart problem. I’m dealing with my heart problem is being
caused by all this potentially and not knowing what is happening with that and how it’s going
to affect me long term or if they’re able to stop it because the scleroderma’s taking
over so fast it’s just like, it’s really really really hard being in here with all these unknowns
so we’re managing and yesterday was a good day and we are preparing for a harder day
today so let you know. So we just arrived at Vancouver General Hospital,
and here is the view of Downtown Vancouver and the North Shore Mountains from his beautiful
hotel I mean hospital suite. Things have been going very well since we’ve
been in Vancouver General Hospital so day one being here it was an onslaught of every
department that is going to be helping me out, their teams, leaders checking me out,
getting all of their ducks in a row to figure out what tests to do next. Yesterday was a full test day had my IV line
put in, had a full body x-ray for the hematology team to investigate my bones. Oh yeah had a brrr echocardiogram so that
was checking out the heart to see how it’s operating then today I got to start my day
off with a delightful bone marrow biopsy which comes out of the hip bone. It was a little stressful um they had me on
ativan and morphine this morning but I will say when they go to take out the liquid bone
marrow that’s painful, that’s not pleasant but it’s pretty short as long as they warn
you about it I actually had Julia hold my legs down cause I kept flinching and actually
I ejected the needle for him so he had to go back in again and do a second try so that
was good. now I have an MRI of my heart today. So that will be the rest of my day oh yeah
and they’re probably going to slip in here at some point and cut a chunk of my skin out
for a skin biopsy and then we’re on to tomorrow. So it is now Thursday it is also my birthday
I’m still in the hospital which is not where I was hoping to be but hoping we can get all
of this figured out so we can move on to next steps. Um we had 3 tests booked and one of them was
a VQ scan which is chemicals in the lungs dye in the blood then they put me through
a radiology sort of machine and watched how the blood interacts with the oxygen and all
the chemicals and all that fun stuff. We need an IV for that and they were considering
doing a PICC after dealing with their IV specialist you know we were going back and forth whether
we do the IV or the PICC and finally the IV tech was like it’ll hurt but I can get this
thing in in 30 seconds just the regular IV um keeps me still having to do blood tests
every day but um yeah he got it in, it was painful, my skin has toughened so much that
IVs even 3 days later here I’m still feeling the tension on the skin as liquid flows thought
so now today I’m seeing the ophthalmologist to check out what’s going on with my eye.
and I’m currently on what they call flush because I’m going to have a colonoscopy later
this afternoon so that was fun running to the bathroom all night but ah I guess you’ve
gotta do what you’ve gotta do. so today is my birthday and we’re going to
have my very favourite local pizza and a cake I guess and so that will be probably the only
food I eat today and looking forward to that. Spirits are you know, as good as they can
be for this situation but we’ll see how the results come in to see how I do. We’re hoping hoping that all of this leads
to that my issues are not serious and mostly related to the scleroderma so we can move
on to treating it as opposed to something else. These are from Jason and Villerma and Luca
from Disney Vacation Family. Thank you. Thanks guys. And there’s Ben. We’ve finished all but one test so last big
one was just done. Yay. The only tests left to do are like eye doctor
type tests. So he’s got an angiogram. So all the big tests are done now we just
have to wait for the doctors to confer and figure out if we can still do the bone marrow
transplant for ben and I think that’s where they’re leaning we’ll see it’s a fun ride. I am finally being discharged from VGH hospital
in Vancouver so we had a royal twist last night where all of the tests came back great
had pulmonary hypertension which is not great but we had what they call is the christmas
case so mild case plus reactive to medication so that’s good. The shot was that we couldn’t get ah Calgary
basically said that pulmonary hypertension is going to be a no go point since then everyone
here, rheumatology department the pulmonary hypertension department and all contacting
Dr. Leclercq in Calgary to ask for me to be considered just because they feel this is
the only and best place for me next and that my pulmonary hypertension is mild enough that
they would be comfortable with the procedure anyways, finally going home or at least to
my mom’s place follow up appointment and then hopefully in the next 24 hours we’ll know
the story about Calgary. So, keep you posted but it has been a long
long 3 and a half weeks of tests and hospitals and unknowing and it’s just going to go on
to the next but ah Ju has gotten me through it and the hospital staff here at vancouver
general hospital have been I can’t even explain how amazing they’ve been um and especially
now that they’re all going to bat for me to help my health so thank you guys and um we’ll
talk soon. This is not a bad view from the bed while
I was here despite how crappy it’s been. Almost looks like a picture oh there she is. Hey sweetie yeah it was kind of okay. Have you shown them the view from the bathroom? Oh you mean the view from my commode? So this is the view while you sit and do your
morning biz. It says I love my sweet bear heart because
I call him my bear heart. So then there’s a little picture of a bear
holding a heart balloon that’s what Ben got to see everyday so he knew that I loved him. Love you sweetie thank you for everything. I love my bear heart. I love you. It’s done, we’re done. it’s not done. Oh I know. This part. This leg. This part is done. We can go home for a couple days. I want to get out of this room. Let’s do it.

33 Replies to “Our Scleroderma Journey || Vlog 2 June 2018 – Vancouver General Hospital”

  1. Ben, hang in there. We have you in our prayers to get through this. Julia, keep up the faith. We are with you.

  2. HAPPY BIRTHDAY BEN…..i know u would rather be in hawaii or disneyland…..:( oh man…more tests…that sucks rotten bananas Ben!!! 🙁 man….i know one thing….i'm never going to complain about what i go through ever again!!!!! at least you've some good news! just keep keeping tough man! and we will all keep sending more prayers okay? i do love how no matter what you're going through…you still have the camera in your hand!!! great shots of vancouver! wish i could bring you a dole whip!!!!

  3. Happy belated birthday Ben!! Lol when you said the view from the “hotel”. Oh this sounds so hard to go through Guys 😞 aww that’s nice they sent flowers. I didn’t even think of that 🤦🏾‍♀️ aww love the note on the wall. Praying that the condition gets under control enough for treatment 💜

  4. Prayers still for you guys, both of you, to get thru this and for a full recovery. Our thoughts are with you and glad to see updates! ~Dawn

  5. Happy belated birthday Ben! We think about you both all the time. I wish we could do something for you. You dont deserve this, either of you.

  6. Happy Birthday Ben! Hang in there Ben you are strong! you can do this! Julia keep the spirits up God iswith you both! I will keep praying for you! sending you hugs!! 💙💖

  7. Hey guys. Sending all the love and prayers from over the pond. Stay strong my friend. Your one of the strongest guys I know.

  8. Listened on the way to work. Thank you both for keeping us informed. You two are regulars in my prayers.

  9. Oh man Ben, this looks like a very painful set of tests that you had to go through! Happy belated birthday! I am only sorry you had to celebrate in a hospital. Julia is doing a fantastic job of support! We hope good news will be coming so that a green light can be given to the transplant! Raise the Black mates and run out the guns! You got this!

  10. Happy belated Ben. Still sorry we couldn't see you while we were in Vancouver as well. You've both been in our thoughts though. If there's anything we can do let us know.

  11. A birthday in the hospital. ( Happy belated Ben!) I am glad you got your fave pizza and cake! You are so brave!!
    You two are so wonderful and loving! You can feel the love through your video. Stay strong Ben! Stay strong Julia! You guys are in our hearts. xo

  12. Happy belated birthday Ben. Nice view from the room at least. Do you guys bring a notebook and write things down when the doctors come by? After meeting with various doctors dealing with our daughters issues when we were in the hospital, my wife and I would forget things or disagree on what we heard. It can definitely help. Crazy amount of tests, but sounds like you are in good hands. Continued prayers and so happy to see you get back home 🙏

  13. Ben, I am so sorry that you're Calgary trip had to be canceled. I think it's so brave that you decided to share these vlogs and your journey with all of us. I'm so sorry for all that you are having to endure. It's just SO much. I remember when you moved to the new room and Julia had sent me a Marco Polo. She was so happy that you had a private room WITH a gorgeous view. Any little thing to help make a bad situation a little better. It's part of what I love about you both…your ability to find a way to stay positive even when faced with all the bad. TOO MANY TESTS! I am so glad you have the majority of the tests behind you and can be back HOME!! Wow! That's quite the bathroom view! Thank you again for sharing these vlogs with us. We love you so much! ❤❤❤

  14. Happy Birthday Ben, we hope you're feeling better and keeping you in our thoughts! Julia, you are amazing =) TGIF

  15. Wow… so many tests…must be so exhausting Ben….Wow… the view is amazing… too bad Ben can't enjoy it…Ben? is your hair getting crazier and crazier?? 😂Sorry… I just figured you would get a kick out of that comment! 😂oh yes… it is definitely getting crazier… every see the movie 'Something About Mary'?? 😂I want to listen to you speaking so I had to scroll the video window up a bit to cut off the top part of your head so I don't keep staring at your spiked hair! Laughter is the best medicine, right? 😬Oh yay!!!! So happy you got the balloons and flowers Ben! Wish we could do more… long days there in the hospital… Day 13… wow… mild case? I thought the pulmonary hypertension would prevent you from moving forward with the transplant… oh wow… that's great news, right? Gosh Ben… so tough… Wow… even the toilet had a view??? oh crap… sorry about the transplant news Ben… it was sounding positive….

  16. somehow i got unsubscribed to u and just noticed now cos i was wondering why you dont upload anymore…WTF….i am so sorry about all that…

  17. Have you read Henry Scammel's book about using antibiotics such as Minocycline for Scleroderma treatment? I highly recommend looking into this bacterial component of the disease. Wish you the best!

  18. Привет, друг. Не нужно болеть. Лайк 32 и подписка 619 от новых друзей. Ждем вас в гости с ответным визитом.

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