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Posted (edited)
6 hours ago, Dove said:

My daughter had this. Her clot was 4" in the portal vein. They put her on medication for clotting. Hers was caused by a rare condition called Polycythemia Vera, a rare blood clotting disease. I hope you have one of the less severe conditions on the list of which there are many.

I will Google that condition.

4". My goodness.ย  They said mine was 'very big', but would not give details. In my head I was thinking 1/2" was big, and maybe 1" 'very big'. This astounds me, but totally explains my pain! I never thought....

ย 

Can Iย  ask what symptoms she had. I am also interested in timing. I learnt of this yesterday, but I have had no doc drop past doing his rounds to update me. This is because the haematology ward is full, so I'm on a different floor in the 'Burns' unit.

No nurses here know the 'haematology' routines. Did she have a long hospital stay? How long was the treatment?

If you do not wish to share in the general chat, please be assured of my confidentiality in a private message.

Tia

ย 


Edited by โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone
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A specialist from the haematology just came. I pressed him for specifics. He had to get the scan and measure it. 10cm (4") My heart sank. It will be months of treatments, while at the same time, trying to find the cause.

Oh dear....

Iย  would be lost without hope.

10cm.png

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2 hours ago, hatcheckgirl said:

Hang in there, Tony! Jehovah has your back ๐Ÿ’

Hi, I don't remember all the answers to your questions because it was so long ago that she was diagnosed. I just remember that she was on Warfarin for a standard 6 months and I don't think she took anything after that. I remember some of her symptoms were fatigue, bad headaches, pain in the area you said. She was working full time as a Sales Manager every day because her husband lost his job and she was keeping the bills paid, but one day she couldn't handle the pain anymore and ended up in the ER. At first, they said it was nothing and sent her home, but shortly after she left they called her and asked 'how fast can you get back here'?ย 

She's on a trip right now but I texted her and asked her more about it so I can give you any more information that might help you feel better. I hope you will be okay as she is doing okay, but there is a longer story to this..

I will get back to you as soon as I know more...keep your hope up...๐Ÿ™‚

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7 hours ago, Dove said:

Tony, my daughter she said she would talk to you if you would like. phone or email. You could PM me your info if you wish to do that..

DM done. Thanks for that.

To be working and dealing with the pain!

Unbelievably strong.

I'm feeling better today, and the pain is manageable. I'm hoping it stays that way.ย 

Thanks everyone.

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52 minutes ago, โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone said:

DM done. Thanks for that.

To be working and dealing with the pain!

Unbelievably strong.

I'm feeling better today, and the pain is manageable. I'm hoping it stays that way.ย 

Thanks everyone.

Feeling pretty stupid right now, but what is DM and where can I find it. It's not anywhere on my computer that I can see

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Hi. I sent a Direct Message through this chat. I use a phone for this site, so I'm not sure of the way it looks on a PC, but up the top right of the screen should be an 'envelope' symbol. I'm thinking it should be in there.ย 

What I did was click on your icon/name, and it opens your profile info. On there was the 'envelope' symbol, and that is where i typed my email address.

You could try the same and send me a message, and i can put in there my original message.ย 

ย 

Oh,

It might be in your 'notifications' list on the top as well.

Agape.

PS I'm feeling better today.

ย 

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Posted (edited)

Update.

ย 

Still in hospital. Getting 2ร— 100ml Clexane injections (blood thinners) in the belly each morning and night.ย 

They are very thorough. I stopped counting at 30 vials, but I am sure I have given over 50 now. Initially I came in quite dehydrated, so it took more than 1ร— go to strike oil. Usually after the second go they give me a break, and handball it to another nurse.

Both my arms have red dots from the back of my hands all the way into the elbow fold.

I can eat and drink again. The pain comes in waves, but the severity and frequency are dropping. I hope this trend continues. And the pain killers they have here is beyond the usual 'over the counter' ones at home.

They moved me to the Oncology floor. I lost my room with a view, but the skill level here is reassuring. I had a visit from the Dept Head today. She was fantastic. I am grateful for all their skills.

Looks like I will be on blood thinners for life. I'll be here for another 2 days. In 2-6 weeks the 'main pain symptoms' should ease. (Whatever that means.) 3 months of tests and monitoring to find the cause. (Some rare but nasty options in there.)

12 months to see this clot gone. Then thinners for life so it doesn't happen again.

To think, Sunday last week I was wandering around market stalls on a day out with the family.ย 

Coming to the Oncology ward was a shock. I typed up my first impressions and sent it to my kids as something to do. I tried to put some humour in it. I'm happy to share if you do not pass it on.

(I don't want the guilty to be shamed.)

Just ask for a copy and I will send it to you.

Thanks everyone.

.ย 


Edited by โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone
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8 minutes ago, โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone said:

To think, Sunday last week I was wandering around market stalls on a day out with the family.ย 

Coming to the Oncology ward was a shock

Its a shock to have our lives changed so dramatically, so quickly. Hang in there and don't get discouraged.ย 

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Yes.ย  All vaxxes up to date.ย 

I asked whether the 2 doses of AZ had a bearing,ย  but I was told that as my last AZ was Sept 2021, it was an unlikely cause.ย  My last 2 were the Pfizer & Moderna.ย  Then there is the 2022 Flu Vax & the shingles vax....ย 

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Follow up:ย 

Stress was a bit much for my wife.ย  She went to hospital with chest pain and numbness in left arm. BP 190+

Only overnight stay.

Ran battery of tests. No immediate danger, but there will be follow-up tests.ย 

Needs to try relax.

Easier said than done.

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  • 5 weeks later...

Thanks for asking.ย 

We are both at home. I have my first follow up with the specialist next month. Still no idea why this random and rare clot struck me.ย 

My wife is undergoing continual tests.ย 

So while we don't have any definitive (or official) prognosis, we are both getting many tests confirming other bits are all in order. Lol.ย 

I have read a bit on Google, but I don't know how to translate it into my condition.ย 

One thing that is hitting hone, is how tired I am now. I sleep most every afternoon. They said it would be months before I started to feel better. I thought it would be quicker, but my experience is that it will take some time. 12 months on blood thinners the Doc said. And if they find no cause, I will be on pills for life.ย 

I'm struggling to get my head around this change in me. I'm exercising my patience.ย 

ย 

ย 

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2 hours ago, โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone said:

Thanks for asking.ย 

We are both at home. I have my first follow up with the specialist next month. Still no idea why this random and rare clot struck me.ย 

My wife is undergoing continual tests.ย 

So while we don't have any definitive (or official) prognosis, we are both getting many tests confirming other bits are all in order. Lol.ย 

I have read a bit on Google, but I don't know how to translate it into my condition.ย 

One thing that is hitting hone, is how tired I am now. I sleep most every afternoon. They said it would be months before I started to feel better. I thought it would be quicker, but my experience is that it will take some time. 12 months on blood thinners the Doc said. And if they find no cause, I will be on pills for life.ย 

I'm struggling to get my head around this change in me. I'm exercising my patience.ย 

ย 

ย 

Get well soon my brother.

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7 hours ago, โž•๐Ÿ‘‡ ๊“ค๊“ฑ๊“ท๊“ ๊“ต๐ŸŽตTone said:

They said it would be months before I started to feel better. I thought it would be quicker, but my experience is that it will take some time.

So sorry about this, it's really hard to have a lifestyle change, especially so unexpectedly. Hopefully you and your wife will feel better and get stronger. But in the meantime, if your body is telling you it wants to rest, there must be a reason.ย 

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