Hi, newbie here

<waves hello to everyone> I'm Karen, 40 from the UK. I survived a massive saddle clot in dec 08. I know I am incredibly lucky to be here as I almost left it too late. I already have a lung condition called alveolitis, this was caused by an allergy to parrots, luckily I was diagnosed and found new homes for my babies before too much damage was done. Anyway I was very stupid and started looking after a friends little bird, I thought well it's only tiny, won't do me any harm. I started reacting within 2 days of her being here. Usually steroids clear it up so I went to the emergency docs, he gave me a lecture about getting the bird out of the house but eventually prescribed the steroids. This was on saturday, by sunday I couldn't even walk down a flight of stairs. I spent most of the day in bed and monday I phoned my usual gp. He said he would come out and see me, meanwhile I phoned my husband to come from work and went to have a shower. I remember coming into the lounge after with the weirdest feeling in my chest. It was more than shortness of breath, my whole body started to tingle, my chest went tight and I was seriously light headed. I sat down and very calmly asked Darren to ring an ambulance, I said that I was sorry but I was going to die. I wasn't panicking, it was pretty surreal.

The paramedic turned up within 15 minutes and took my sats, my oxygen level was at 80% My gp also turned up and said he wanted me in hospital. I was put onto oxygen and duly loaded into the ambulance. I had to go via A&E, it was so busy and I was left in a corridor on my trolley. My oxygen ran out twice which was pretty damn scary. They ran the routine bloods which showed I was dehydrated but nothing else. The ecg showed a racing heart and I was given a large dose of steroids. We all still thought it was the bird allergy. I was sent to acute care for the night, I begged them not to send me home, I just knew I'd die if they did.
The following morning they seemed unsure what to do with me. I was transferred to infectious disease unit in case the parrot had something nasty. The consultant came round about 5pm and asked all kinds of questions. He said he would get me a ct scan just to be on the "safe side" I got my scan about 8 or 9 pm and within the hour they came to tell me I had a lung clot. I had hardly slept in 2 days and just wanted to get some sleep. I said and I quote "ok how do we get rid of it" the dr looked at me and said injections in the tummy for a start. They gave me my first jab and went off again, he returned about 30 minutes later and said they were transferring me to another hospital which specialised in this kind of thing. I later found out it's one of the best heart hospitals. I was so exhausted and didn't realise how serious it was, I begged to be sent the next day. He went to talk to his boss and said they were sending me as soon as an ambulance was available.

I got to Glenfield in the early hours and was told it was a saddle clot. He said they would be giving me the heparin injections but they wanted to do an echocardiogram. A lady came to do it and I saw her zone in on something and press her pager. The same guy came back in and she pointed at something at which point I said "it's bad isn't it" He said yes,my heart had enlarged on the right side and I was in danger of an attack, in his view probably fatal. He said if the clot moved it would probably be fatal too. He then told me that in his opinion they didn't have the time to give the heparin injections as my heart was under so much strain and the clot was so large it was almost blocking the entire blood supply to both lungs. I was then offered the option of being thrombolysed, I was told there was a 1 in 100 chance of it killing me but they were my best odds. He left me to think about it, I have never felt so lonely in my life. Another dr came in to take blood gases from my wrist (christ that hurt) he was lovely and talked to me as a person rather than a patient. He also came to check on me when I was sent to respiratory and no longer under his care. Anyway I saw it was really my only chance of survival, they phoned my husband and parents who all came to be with me. I thought they'd wait until morning to do it but they wanted to get started asap. I was surprised when it was just a drip going into my arm, I think I expected something that had the potential to kill me to be a bit more exciting. I had 3 white terrified faces watching as this stuff went into my body. I was oddly calm, it was only when I got a nosebleed that I started to fret but it soon stopped with an ice pack. Anyway I was in for 13 days from start to finish, I'm still struggling with it and have days where I'm back in that lonely place. I wouldn't wish this on my worst enemy, just have to keep reminding myself how lucky I am.

I've had 1 lot of genetic tests, they wouldn't tell me the results over the phone apart from there was one which was positive. She mentioned factor V a couple of times but I won't know for definite until the end of may when I have my next appt. They have already got my sister in for full screening next week, they're not messing around :-/
Anyway love to all of you and I look forward to getting to know you.

Karen xx

Hi Karen,
and WELCOME to LADVT, what a story that is, you had me on the edge of my seat, I'm glad you are out of the danger zone.
You are truly a living definition of what a SURVIVOR is!!!
I hope that we can offer you some support and if you have ANY questions,ask away.

Denis

Thanks Denis

Yup I am definitely one of the lucky ones. I've just been referred for some cognitive behaviour therapy as I keep reliving that night. I am extremely grateful to be alive but at the same time haunted by "what ifs" I try so hard to be positive but like all of us I get down times. I think the emotional aspect has been far more difficult than the physical. Thanks for the welcome

Karen

Here is to match your "wave"

Oh yes the emotional and physical roller coaster of this illness, it certainly takes a toll on people and a lot of it, is resulting of taking warfarin. All the "what do I have to do?" and "what I can't do?"
and "I have to do WHAT?????"
We are expected to become professional know it all overnight. It's a hard job, but somebody has to do it...
All this to say, that it does get better after a while.

dero wrote:

All the "what do I have to do?" and "what I can't do?"
and "I have to do WHAT?????"

That tickled me I have been lucky with my INR, it's been stable almost since the start of warfarin so I must be doing something right. The only time it went ape was when I was on antibiotics for pneumonia. I think my lungs got a bum deal with me!
I think I almost qualify for a white coat and stethescope. When I was diagnosed with alveolitis none of my gp's knew anything about it. One freely admitted he was going on the internet to read up on it lol.

OK, what makes a clot a saddle clot, that is the first time I hear that term.
I'm still learning after 2 years...
If you don't mind me asking.

A saddle clot is where it sits on the join of the main artery. That's why it was so critical as it was blocking almost the entire blood supply to both lungs. I've only seen 1 other person on the forum who had one so not sure if they are less common. It obviously found it a confortable resting point, sure wasn't for me though <g>