Another introduction

Hello everyone,
So pleased to discover your site – many congratulations to the original minds behind its creation!
Thought I’d follow the lead of others who introduce themselves and their experiences as a first post.
I am relatively new to DVT & PE, so please be patient with my current lack of ‘techie/medical’ phrases and knowledge about the conditions.
Back in mid May I had an accidental fall down three little steps and landed awkwardly on my ankles. It transpired that I’d broken one (a cleanly broken fibula and a cracked tibia) and the other was just badly bruised with torn tendons. I thought little of the event and resigned to hobbling on crutches and with a plaster cast from toes to knee – how I imagined I would remain for about 6 weeks. My leg was painful but I just assumed that’s what I should have expected having broken it!
Eight days after the injury I almost collapsed at home one morning – profuse sweating, tingling hands and feet, slight nausea, very rapid pulse and heart rate, incredible shortness of breath and a feeling of doom … falling over was the next step but my husband and a neighbour managed to stop me hitting the floor! Instead, I was taken round to the local hospital’s A&E where within moments a young doctor told me she expected I had a DVT which had travelled up through my body and had now settled in the lung – hence the shortness of breath and the overwhelming feeling of panic. I was admitted immediately – apparently they will not let anyone home who is suspected of having a PE. Anyone who knows anything at all about the British NHS will appreciate that arriving on a hospital at the start of a Bank Holiday weekend is not a good omen! I was left on oxygen, a saline drip to ‘hydrate’ me and painkillers – which didn’t alleviate the panic I was beginning to feel following phrases from doctors who casually passed by the bed, read notes and uttered scary phrases like “Oh, PEs are deadly” etc, etc. I didn’t get my CT scan until late in the day the following Tuesday (how ‘suddenly deadly‘ are they???) … and an apologetic young doctor rushed in to tell me – just after ‘lights out’ on the ward - that they had found multiple PEs in both lungs … I’d probably be put on Warfarin for 6 months, no worries, night night!
Of course I was in a state of shock the next few days, my blood pressure hit new heights, my leg hurt and I couldn’t breathe too well either. I was put on Warfarin, 8 mg, as I recall and after the first dose I awoke the next morning with heavy uterine bleeding … fan-bloody-tastic … just what I needed having thought I was through the menopause!
The learned, though puzzled, doctors ordered more blood tests, an ultrasound test (and a thorough gynae exam) and after only two doses of Warfarin concluded that my liver was reacting negatively to the drug (as well as my girly bits) so they’d continue the anti-coagulation by using exoxaparin alone (Clexane (UK)/Lovenox). I started having a 135 mg/ml dose a day – learned to self-inject in no time at all. Eventually I stayed in hospital for 12 days.
So, I’ve now been on Clexane for nearly 8 weeks. When I returned to the hospital to have my plaster cast off (6 weeks after the injury) I was told that my ankle bone was still broken … I was to be re-plastered for another 6 weeks! Strewth, I had read that one of the contra-indications of Clexane is that it can lead to osteoporosis … but when I asked the doctor if those same drug properties might have slowed the healing process of my bones he shrugged his shoulder and said, “…possibly – such info on the ‘net’ was probably as a result of latest research and is wasn’t recognised info’ in his circles yet – but why didn’t I eat more cheese and drink more milk as a precaution!”

I have been advised to have an echocardiogram in mid August (apparently using anti-coagulants can cause some problems?) but apart from that I haven’t had a single blood test since those done in hospital at the end of May. My next appointment with the vampire (haemoatologist) doctor is in mid September (no appointments available until then!). When I saw him he advised against flying anywhere for the rest of this year, and suggested that I would stay on the Enoxaparin until November … after which I’d probably be advised to take an aspirin a day for the rest of my days.

So, here I sit unable to improve my circulation by walking as I’m plastered and can’t risk getting it wet (we’ve another soggy English summer day today). I’m getting quite tired and assume that’s either as another side-effect of Clexane or just doing nothing other than getting frustrated. I’ll keep checking this website … to background mind-noises of ‘now that I’ve found you, I can’t let you go’ ……
Take care everyone. It is so, so refreshing to find a bunch of people who care so much about one another and who are facing similar difficulties with getting the rest of their worlds to understand their frustrations fully. Keep being pro-active, by sharing and developing our own knowledge and understanding with luck we’ll help the next visitors along too.
Byeeeeeeee for now, Linda xxx

Linda, hi and welcome! “Oh my word” is all I kept thinking while reading your story. Multiple PE’s in both lungs – how terribly scary! You poor woman, you have been through quite an ordeal!

Glad to hear that the Clexane is working for you after the bad experience with Warfarin. The idea of self-injecting gave me the creeps so my boyfriend used to inject me until the day that I was upset with him and thought “buggered if I’m gonna ask” hehehe…well good thing too because I found it not so bad and can now at least inject myself and not be dependent on others to help (to my boyfriend’s dismay … he rather enjoyed injecting me lol)

Bluddy hell @ the plaster for yet another 6 weeks! You must be rather annoyed already! Hope you are being spoilt at home at least and treated like a queen … always helps hey Hey, things can only get better from here on out and this forum is really great “company” on your way to recovery. Its so fantastic to speak to people who share your fears and know what you are going through. I find the forum so educational and helpful and have learned more here than anywhere else.

Do stay in touch and let us know how you are doing.

Regards
Madeline

OMG, When I first started reding your intro I thought Sharon was on some kind of painkillers and was writting about herself...
See Sharon's bio the last part, the fall, the ankle fracture and the other ankle bruised...

Linda, yes I know it's you and not Sharon, welcome to "Life After DVT", so sorry that you had to join our elite club, heck I did not wanted to be part of it but yes, like you said "Keep being pro-active, by sharing and developing our own knowledge and understanding with luck we’ll help the next visitors along too." So well said!!!
Hope that you find answers to your questions and if you don't, please ask, we have a bunch of knowledgeable DVT outpatients here that will simply blow your mind with what they know.

dero

Cheers Gismo and Dero,

So good to feel that I 'belong' so very quickly!

I am enjoying reading so very many of the articles and yours and the other members' experiences that at times I feel a wee bit of a fraud ... then my painful leg kicks in and I attmpt a flight of stairs and gasp for breath for a few scary moments and reckon I probably qualify for membership after all

Really interesting to note the different countries' approaches to care and variations in quantities of information given out. I'm back in the UK after working in New Zealand for 6 years. Their health system is brilliant and caring and there were times I used to boast about how brilliant and efficient the UK health services were too ... but alas, I really feel now as if I have learned so very little from my UK doctors compared with others. I have a particular frustration about the fact that different 'specialists' don't ever venture outside their 'spheres' to discuss patient situations with others. I discovered for myself that enoxaparin over a long term use has been found to cause osteoporosis ... I was put on it (for DVT and PEs) with a broken bone and after 6 1/2 weeks of plaster cast, combined rest and some recommended weightbearing exercises, it did not heal! Nobody anywhere was prepared to say whether the failure to heal might possibly have something to do with the drug's contra-indications. Makes sense and seems logical to me ... grrrrr

Keep well everyone xxx

Hi Linda,

Welcome aboard... nice to "meet" you.

WOWEEE---what an ordeal you have been through. I have a leg DVT, so I really feel a lot of compassion for all you PEs out there.... the way you mentioned feeling doom... I have read about that... sounds pretty darn scary. I'm so glad you're here. You seem to have kept a great and inspiring attitude and spirit through it all! Thanks for sharing your story with us!

The one question I have is about the lack of INR testing.... is that because it's Lovenox? With me being on Warfarin, I was tested daily, and now will be weekly for awhile, then bi-weekly, then over time eventually monthly If you don't have a test until Sept., how can you be monitored to make sure you're on track??? (For instance, I'm supposed to have an INR of 2-3, and it was 3.6 the other day, so I had to have my dose reduced.)

Take care, hugs, and look forward to chatting soon!
Brenda

P.S.

I just noticed in the Memberlist that you are a former teacher? What did you teach?

From a fellow teacher,
Brenda

Hi Brenda,

Great to hear from you too ... I really enjoying the positivism and good humour of folk on this forum.

Hope your DVT will become less problematic as time goes by.

Like you, I was a bit surprised to hear all about INR testing for the Warfarin but apparently NOT for the alternatives! The Lovenox/Clexane is a LMW heparin but since it too is an anticoagulant, I wonder that they think it can go on and on without monitoring? So far as I'm aware, I'll be on this til at least November - which seems to surpass all the timescales I've read for others ... but then again I reacted so badly to my 2-day trial on Warfarin they gave up on that altogether! I wonder how they can tell if my blood is less sticky and at a balanced level if they dont test? Have put much down to my current disenchantment with the way the health services are going over here. So far as I'm aware the Clexane dose is based upon my weight - or what it was when I was first admitted to hospital! With a cast on for 8 weeks already and my inability to get out and walk or run as I would normally, I'm probably stacking on another pound a week so far - so assume the dose will be incorrect in no time at all!

Thanks for the chivvy-up I think I'll bombard my GP with a load of questions next week - that's if I can get an appointment! (We need to give them about a month's warning that we're going to be ill over here!)

Have a brill weekend (better get on with some work now - boss lurking! )

Cheers, Linda xxx[left]

Teacher - one of the rare ICT and Business Studies HoDs - mostly men had those positions here until I battled my way through in the early 80s. Did the same in NZ and was Dean of fabulous girls school too!

Linda,

Welcome to the group!

If I may, I'd like to recommend some websites which may help you in finding out more about your medical condition. In the UK there is an organization called Lifeblood who deals with clotting issues. There website is located at:

http://www.thrombosis-charity.org.uk/cms/index.php

Another very good organization I recommend belongs to a old friend of mine, Deb Smith. Her website (www.fvleiden.org) has been around since 1998 and she has a very nice collection of resources she has developed. There is also an "Ask the Doctor" section on her site where patients have written in question which were answered by Dr. Stephan Moll who is not only a personal friend but also a top notch blood clot specialist here in the U.S.

Though the injury can be attributed to your clotting episode, do you know if the doctors ran any blood tests to see if you had an underlying blood clot disorder (thrombophilia)? Reason I ask is, there is a small percentage of patients (1 in about 10,000) who do have a allergic reaction when starting coumadin (warfarin) therapy. Usually these patients have Protein C or Protein S deficiency. The excessive bleeding may be non-related to this.

Clexane is a Low-Molecular Weight Heparin (LMWH) and is often used on patients who have adverse reaction to warfarin treatment. Normal treatment runs from 3-6 months after a surgey/injuried induced clot. After that the person is normally taken off anticoagulant medication and placed on aspirin which is good for arterial clots but not necessarily venous blood clots. There are studies showing benefits of taking Vitamin "E" to reduce clotting. Harvard Medical School performed a trial which showed some minor benefits of Vitamins E for those patients who are not on long-term coumadin therapy. My physican, Sam Goldhaber, was one of the researchers who participated in this particular study. More information can be found at:

http://circ.ahajournals.org/cgi/content/full/118/2/105

Just something to consider.

Anyways, Welcome Aboard!

WOW . . . many, many thanks 'retirednavy02' ! ! !

What an amazing collection of resources you have given me to work on

Will certainly sneak a look at some of those websites asap ... when boss isn't looking

At about the time I started and reacted really horribly to the Warfarin, I was in hospital and I know they took loads of blood samples but nobody ever said specifically what they were for - one obliging vampire informed me that she had discovered that my liver was chucking out some irregular enzymes - after that it was stick (ooops, wrong choice of word there!) with Clexane and abandon Warfarin.

You are right, indeed, there has already been some talk of continuing forever on an aspirin a day - maybe we'll get bulk discount on those since my other half has those for his heart condition

Take care
Regards Linda xxx

Hi Linda!

Just thought I'd stop in and see how you're doing. Everything going okay?

Have a super weekend ahead!

Hi again Brenda

Seems like a while since I’ve logged in. Think I am at a ‘just bumbling along’ stage – and must confess to having been a bit mis’ just lately – especially when all alone. Maybe the grumps are a side effect of the drug therapy or maybe it is just the normal process of recovering from a traumatic health problem? Ordinarily I am a 150% happy, optimist - humour and positivism are my life guides! There’s something about the invisibility and silence of these conditions which means other folk just can’t or won’t understand. All that is seen is a leg in a plaster cast for which they take it for granted that all will be well and ‘cured’ in a matter of weeks. I’ve had pains in my broken leg and what feels like muscle aches in the other (reckon it’s getting a mega work-out doing loads of compensatory work for the broken one).

Went to my GP with a long list of questions about DVT and PEs and left him thoroughly disenchanted as his stock answer for just about all was ‘can’t answer that/not a specialist in this/that or other field.’ I spent over a week trying to track down a pharmacy to supply my daily Clexane dose in one syringe and have had to make do with the only available alternative which means I now jab myself in the tummy twice every night to get the correct dose! There is apparently no alternative to Clexane available in the UK – given that I am unable to have Warfarin.

I can’t wait to get this cast off. I am champing at the bit. I can hug my dog lots and look forward to long brisk walks with him again soon – will get my circulation working properly and maybe shed some of the blubber I’ve accumulated during my enforced confinement. Longing to get to the local swimming pool, drive my car and get onto my cycle again too. Have felt completely trapped for far too long now.

Obviously I’m not a very patient patient.

It’s so very nice to read stories and experiences on this forum – has returned me to sanity and a state of tolerance once again.

Bless you, hope you are faring well, weller and wellest!
Regards and good wishes
Linda xxx

Hi Linda!

Glad to hear from you! Being a 'mis and in the grumps I think affects us all! I know it did me! So you're not alone on that one! And it sucks quite honestly when people don't understand. But we do!!

That must be quite an ordeal to give yourself TWO shots every day! I sympathize with you. Are you getting bruised from it all? How is your tummy handling all the pokes?

Glad you're able to get out about with your dog. I know getting out makes me feel a ton better, but I can only imagine it's so much more difficult for you, considering everything your leg has been through When do you get the cast off?

Have a super weekend!! (I'm heading out tomorrow--Fri.--for an early one).
Take care and I'm sending you a ton of healing wishes and good thoughts!
From your fellow unpatient patient!

Hi Linda

Been ages since we last heard from you. How are you doing? Have they taken the cast off yet? How is the Clexane going? (Lots of questions I know!)

Was wondering how much your current Clexane dosage is seeing as I've read on your post that you need to jab yourself twice a day. I have been put on Clexane since this past Friday (I'm trying to fall pregnant) and my dosage is 40mg/day. Do you need to take it at night or morning?

Hope you are well and look forward to hearing from you!

All the best,
Madeline

Hi Madeline,

Yep, so sorry I've not been very active on the computer just recently and have just returned from a short holiday in France - a place I can get to without flying and I stuck at ground level in the Loire Valley so breathing would be ok too!

Cast was eventually taken off after 14 weeks and then replaced with a velcro-adjustable plastic covered splint, and an elastic tubigrip for use when the ankle got sore and achey. Have had hospital physio and joined a local gym - gruelling but fun with so many squeezy, cuddly people trying to shed pounds too. And I'm swimming 30 lengths of the pool at least twice a week - this has to be just the BEST therapy as the water takes all the weight from the sore ankle bones and works the muscles and tendons gently and completely.

My Clexane dose is 135 mg/day - sounds a really heftly dose compared with yours, but I believe it is guided by body weight (makes me feel like a elephant - ok, so I'm carrying a few extra pounds but I dont think I am generally regarded as too overweight and certainly not obese!!) but in my case Clexane was the prime way of clearing the DVT and PEs as I couldnt take Warfarin/Coumadin at all (highly allergic reaction and bleeding - not nice)! The only reason I need two shots (in the evening) is that in this blooming country they dont allow pharmacies to offer pre-filled syringes of more than 100 mg (although they were readily available at the hospital when I was an in-patient!) ... so I have to do two jabs - one at 100 and another at 40 with a droplet squeezed out! I think the timing for the injection is pretty much to suit (roughly 24 hours apart) - I continue with evenings as this is when they were first given to me in the hospital. I understand that Warfarin/Coumadin has to be taken very close to then same time every day - not so with Clexane, but getting into a routine which suits you/your lifestyle makes a heap of sense.

You will be aware that there is a really small area into which one can inject - I was told to imagine a circle of about 3 inches around my navel and then inject only into the bottom half of the circle. (Apparently this area is just fat not muscle - even in a skinny person - so no damage will occur) But, I have noticed that I have some small pea-sized lumps forming under my tummy skin, which is a noted side-effect of these darned injections. My doctor just said 'c'est la vie - this is the down side of an otherwise ok medication!'

I wish you lots and lots of luck with your family plans - do keep us posted on news as and when things happen

Lots of love and take care - sweet pooch too - mine (aged Irish Setter) needs a walk now ... cheerio for now

Linda

Hello there Linda!

So nice to hear from you again! Wow – holidaying in France … oh my word, I’m so envious! It sounds absolutely fabulous! Bet you had a great time. Hmmm, not so great for us being at the arse end of the globe – its so far and expensive to travel

Glad to hear the cast is off and that you joined a gym! Wow, good on you! I used to gym five days a week and loved it. Its good fun bouncing around and training with other people. Don’t know what happened lol, but I turned into a couch potatoe and spend way too much time in front of my pc. Hence, no exercise and being way too lazy! Oh yes, swimming is the absolute best exercise, I agree. I cannot wait for it to get warmer here so we can do just that.

Oh my gosh, having to inject yourself twice a day! That is really horrible, shame man! I think you have such a high dose because you (as you say) cannot take Warfarin to break down the clots whereas my dosage is a preventative measure which is why its so much less.

I have been injecting about 5cm away from my bellybutton and alternating sides. I was not told to only inject in the bottom half. Hmmm, conflicting stories all the time hey I don’t think it really matters as long as you do not go too close to the belly button. Shame man Linda, now you are also having lumps under your skin from the injections – what next?!?! No rest for the brave ey!? How much longer do you need to take Clexane?

Thank you so much for the good wishes, I really appreciate it! You guys are the best! I will most definitely keep you posted. I’m holding thumbs that I will have good news soon

Have a super day and thanks for writing!

Take care of yourself!

All the best,
Madeline

That is good to hear that you are improving Linda!!
Glad to hear that!!
Welcome back, France hmmmm, fetcher la vache...
(little Monty Python )

Ah ha, a ‘Holy Grail’ groupie, eh? Dates us both … lost on these youngsters around on the site … nudge nudge, wink wink, say no more, know what I mean …

Yep, am beginning to feel almost human again – especially if I am able to discontinue the daily injections sooner rather than later! I spoke to my doc about the use of preventative Clexane for 3-5 days before any long-haul flight in the future (doctors in some countries are now suggesting this is a first class option for those who have had a DVT – apparently the aspirin-a-day routine is now old hat and probably does nothing at all in the anti-coag therapy as has been thought in the past) … and he had the blooming nerve to say that it was a darned good idea and one that he might use himself (he’s an Army Officer Medical Consultant – flies all over the place on military postings) but he couldn’t imagine it ever being considered in the UK civilian health service!

Hope you have better luck with your medical consult/blood measures post starvation next week! Keep us posted cos my cholesterol count has sky-rocketed too and I have always been fit as a flea and eaten/cooked & prepared meals to a strictly balanced regime since my husband had seriously major heart problems (an inherited pre-disposition) over 15 years ago! I’ve taught diet and nutrition too, so know what I’m doing … Seriously, I also wondered if it was the condition or the medications to blame! ???

Linda

Hi everyone,

Wow, it's been a long time since I caught an upate of folk on the forum! I do hope everyone is bumbling along happily (despite the numerous obstacles) and that positivism still reigns

A couple of weeks ago I finally had the OK from my GP to cease the clexane (lovenox) injections! I'd been injecting two syringes every day for just over 6 months and my poor tummy looks like its been used as a dartboard - every colour of the rainbow in bruising ... and now several little hard lumps under the surface which I am told will probably be there forever since they are dead tissue as a result of all the jabs.

The local hospital has also now dismissed me from their physio gym - they reckon that since I can walk, their work is done... DOH! (never did have a prob with walking - more the pain from the broken ankle, recovering tendons and muscles and the DVT... but guess they have done what they were told to.)

My breathing is still sometimes erratic and I have no idea if the PEs have diminished significantly - the doc just says that 'it'll take time'! So far as I am aware, the GP feels he has no further need to see me for the early year problems ... but he did, however, send me a letter the other day advising that a professor of Haematology at our local hospital will want to see me soon so that I can help him in some research into the reasons why I clotted in the first place

Found another brilliant webpage today which others may appreciate:

http://www.emedicine.com/emerg/topic490.htm

Its information was updated in November 08 and seems to be a thoroughly well researched article with heaps of information - if a tad lengthy.

I am staying optimistic and determined. I've lost the stone in weight I gained all the while I was in forced immobility with plastered leg and am now on a mission with a local gym to lose a bit more before flying off to New Zealand again at the end of January. (just for a holiday but the sunshine will be divine!) Apart from catching up with all my pals there, I know of a brilliant, avid extreme cyclist, extensively trained in sports rehab and has studied the effects of all sorts of excellent natural remedies. I have discovered that he's had some lengthy correspondence from folk with DVTs and PEs and he is always keen to assist with little bits of medically backed up advice for those who are confused by all the opinions out there. You might like to have a quick look at his website too if you are wondering about different approaches to regaining full health - he's got three good articles about DVT ...

http://blog.garymoller.com/search/label/DVT

So pals, I may not be around as regularly as I once was, but I shall visit from time to time and think of you all often. Fond regards to all and speedy returns to living with the after-effects and ongoing nuisance of DVTs ... I plan to get on with my life far better informed and assured as a result of this forum than from many of the professionals I have seen!



Especial regards to Denis, Brenda and Madeline who've been supportive and there all along. Lots of love to you all, take care and be very, very well - very very quickly Linda x x x

Linda, I'm glad that we have been able to help, hope we never see you here because of a clot (you know what I mean... )
Take good care of thyself, you are more then welcome to visit and let us know of LIFE AFTER DVT...

...and thank you for those two links, they are great, I will add them where they belong.

Hello Linda

Fabulous news, yay!!! I’m so happy for you that your journey with Clexane has come to an end. Shame, I can only imagine what your tummy must look like by now. At least its all a one-way to recovery now

Thanks for the websites, will have a look at it.

It was really great meeting you here and I always enjoyed reading your posts. Don’t be a stranger, please stay in touch! Thanks for all your support and well wishes.

Wishing you everything of the very best!

Hugs,
Madeline
xxx