Unknown DVT.......so far. Backpack in 5 weeks!!!

[Char0209]

Hi. I write this post from my hospital bed. A week ago I was admitted after suffering pain, cold and numbness in my right foot reaching up to my mid-calf. After a visit to the walk-in centre and several tests and a CT scan at A&E they diagnosed a blood clot just below the knee.

I am a fit and healthy 32yr old, I do not smoke, have not travelled recently or undergone any kind of trauma to my leg, I have no family history or previous DVT issues and I am not on the combined pill. I suffer Raynauds Syndrome and have Sickle Cell Trait.

I was first put on an intravenous infusion of Heparin at 0.70ml/hr (reduced from 1.2ml/hr after my blood thinned too much after 6hrs). I remained on this from the early hrs of Friday morning until Sunday afternoon. It then changed to Clexane injections (97.5mg (I think that's the unit. Dr states this is a high dose as usually 40mg given to patients). I have been giving myself the injections once each day. The pain in my foot disappeared today (Thu) but have been experiencing a dull aching sensation from the hip to my calf since Mon/Tue but the Dr assures me this means the discovered clot is dispersing/dissolving??

Regular obs indicate my blood pressure, temp and heart rate are fine, though at times my BP has been low and my heart rate is approx. 50-55. I was informed that my bloods on admission indicated a low white blood cell count and this has dipped since being in hospital and now remains constant but still low.

I have undergone:

- a CT scan (found clot)

- two ECGs (showed no concerns)

- an Echogcardiograph (showed no concerns)

- Several bloods have been taken but four taken specifically for testing for disorders/causes. Dr states results returned from one was negative (this was looking at a variety of conditions). I am now awaiting the results of three others (not likely to return until next week but I'm possibly being discharged tomorrow with Clexane until results return).

- I was seen by the Senior Rheumatology Consultant today and she appeared to be asking questions relating to signs for Lupus. However, from research I do not believe I fit this (though I know there can be several types and I've mainly researched SLE). This consultant has requested a second Echo (likely to be an oesophageal one) and some other tests, which I am sure I will discover tomorrow when my consultant is on ward rounds.

As my post title states, I am off travelling in Canada, USA, Singapore, SE Asia, China and Japan and leave in 5 weeks. Firstly, I am concerned if I will be allowed to fly, secondly, what kind of questions or tests I should be asking my doctor for, if not already done. Thirdly, if I am able to fly, is anyone able to signpost me to a good and reputable travel insurance company?

As all my test results are not back yet, I know the above and below may be difficult to answer but I am trying to pre-empt the different possibilities and so far I see two and have the following questions:

1) All results return and no cause is found for the DVT.

+ Is this common?

+ How is it likely to treated?

+ Could DVT/blood management be determined in 5 weeks ready for my trip?

+ Is there a likelihood that I would then need to use health services abroad to monitor the management or could I do this myself (or am I being naive)?

2) The last three results return and a cause is found.

+ From the info I have given above, does anyone have any suggestions of what the issue could be or has anyone endured anything similar in relation to their DVT (I'm not looking to accept your comments as a diagnosis and nor would I, I just want to gain more knowledge and possible angles to explore).

+ From the info above, is there anything I'm missing given I have never dealt with this before?

Any help/advice appreciated.

Thanks

[daisyd]

Morning, what a worry for you, good you are seeing a rheumatologist as they are likely to test you for auto immune syndromes

I had a heart attack at 51 due to blood clot, I have Hughes syndrome if you look at that site on here they have a list of good insurance companies, or the hughes syndrome foundation site I was going on holiday long flight within 2 months of having the heart attack 10 hour flight

I know when I was going on holiday with long flight I was only insured by one company, it was the one that look after children who are going on holiday when very poorly. Make a wish foundation, can't remember the name at the moment but on their site.

Expensive but understood that being on Clexane was a good because it ment I was less likely to clot.

I would check with the consultant that they are happy for you to go, it goes without saying take usual precautions, flight socks etc

You may need a letter explaining why you have syringes on you, for the flight and a letter from Doctor explaining your condition. Not sure at what temperature is ok for Clexane is to be stored at. Heat

take it in your hand luggage incase your case gets lost.

Can't think of anything else at the moment, but have a fantastic holiday if you manage to go, please excuse punctuation

I am very jealous

[Pete-1]

Regarding travel insurance for those who have pre-existing conditions and may be experiencing difficulty in finding more helpful insurance company have a post that I copied here on HU from PBirt :-

From Pbirt on HealthUnlocked. I cannot comment regarding this post as I have not yet planned any travelling

Many travel insurers will not cover pre-existing medical conditions it is true but some will give cover provided that you have disclosed the condition to them. They will judge on an individual basis which will be affected by how long you have had the condition and your history with it. I always declare my medical history and because I have been on anticoagulants for so many years with no problems of haemorrhages or thromboembolic complications they will cover me and I always get annual, worldwide, multi-trip cover.

Hope this helps but you can also contact Heath Lambert Ltd who set up "Unique Team" along with Anticoagulation Europe to help find insurance for the likes of us. They can be contacted at 01603 828251 and mention "INReview" or simply look for their details in the INReview magazine of ACE.

End of quote from PBirt.

Hi PBirt, hope you don't mind my reposting your old message on HU.

[Tipper]

Hi. My father, brother and one neice have a genetic disorder called Factor V Leiden which is blood clotting disorder. Sadly my father died (68) of a blood clot before he knew about it but my brother and his daughter both take anti-coagulation injections prior to flying, so it's manageable. They don't take warfarin to my knowledge.

My family and I do not have this disorder but I on the other hand am on warfarin for life following endocarditis (infection of the heart inner lining and heart valves) and a subsequent heart valve relacement.

Anticoagulation therapy is not a limiting factor in flying and foreign travel. You just need to know what you are doing and the impact travel may have on your blood.

Over the last 10 years I have travelled extensively in Europe, visited Aus and NZ (6 weeks touring) and gone on a cruise! (well... actually on the river Danube!) I take my Coaguchek tester with me along with sufficient drugs for the trip + some spare. My INR stays well under control with me adjusting warfarin doseage weekly or more often if needed to accommodate changes in diet, climate and alcohol intake!

I always take spare drugs following a delayed return from Venice when we ended up in Paris as UK was snowbound. Luckily getting the necessary drugs from a Parisian pharmacy was easier than I suspect it would be at Boots.

[CBBound]

1) I've been told often it is hard establish a cause of blood clots, if non of the existing tests show anything... My hubbies have all been idiopathic which means they don't know the cause.. more about that later...

With regard to insurance companies...Many if not most will cover 'pre-existing conditions' as long as you have been stable for 3 MONTHS... Diabetes for example is a 'pre-existing condition. Many people are on meds for various things. You pay an additional premium ..but again the key is You must speak with the insurance company.. name what it is you have or have had and make sure it is entered onto the policy..Eg my sister who had cancer in her 40's and my hubby with his DVT's ..P/E's and more recently a Brain Hemorrhage..

Off topic but also important if you are active and likely to scuba dive, whitewater raft etc.. you should regardless mention this at the time of taking out any insurance or any 'extreme' activity accident would likely not be covered..

I can see a problem with your travelling so soon, I doubt if you would get insurance...

You will likely be on Coumadin or Warfarin (an anticoaglution drug) for minimum 6 months after your 1st episode.. This will mean once you are in the therapeutic range you will have to go once a month for a blood test to check that you are within range 2 -3.... My husband has had 3 episodes.....

My Husband had his 1st DVT / PE in his early 40's he had all the usual blood tests including tests for Lupus and also Factor V Leiden (which is a mutation of one of the clotting factors in the blood called factor V. This mutation can increase your chance of developing abnormal blood clots (thrombophilia), usually in your veins). In the end it was diagnosed as 'idiopathic' which meant they didn't know the cause...

So ~ You may never know the trigger although in my hubbies case I believe CHRONIC STRESS causes more health issues than the medical community presently acknowledge...

He came off the Warfarin after 6 months.. 5 yrs later he had his second DVT's which again resulted in Pulmonary embolisms and he was told he would have to stay on the drug for life... On this occasion we had had a vacation booked for 7 weeks later and although the doctor said "go and have fun" we realized that if something were to happen while away the Insurance company would likely try to pin it on his pre-existing condition and the fact that he hadn't been 'stable for the 90 days prior to our trip.. We didn't want to risk loosing house and home over it....

2 years ago my husband had a Brain hemorrhage (it was not established if being on 'blood thinners' was a contributing factor) He had to come off the 'Blood thinners' because of the bleed in his brain and a month later he again developed DVT and Pulmonary Embolisms....He's made an excellent recovery and now has blood tests ever 2 weeks as he wants to keep his inr in the 2 - 2.5 range rather than 3..

Some Doctors are offering a 'new med' call rivaroxaban which doesn't require a blood test.. My hubby was offered this by the 1st consultant and nearly ended up on it... 7 others!!! all said No.. good for arterial fibrillation but NOT in their opinion for DVT or P/E as there is no antidote.... meaning no quick way to re-coagulate the blood.. in my hubbies case he needed quick re-coagulation due to his brain bleed... If on the unlikely event you are offered it seek another opinion .. in our case the opinions came to us as we we in a different hospital when he had the P/E to the Hemorrhage of a weeks earlier..

Sorry to ramble... .. I would postpone your trip... When you do travel make sure you stay hydrated and wear compression socks for the flight and do seat ankle leg exercises you can find online...

[lxi_99]

I got back from 6 months in Australia & New Zealand 18 months ago. I have MS & it took me a while to find insurance that will cover me for that long. I used Active Travel Insurance after searching for, and getting quotes from the very few insurers that would do it. Most insurance companies will not do more than 90 days & It cost me over £150, but that was the best price that covers for such length of time. Definitely well worth it

Here's the link; secure-travelinsurance.co.uk

Hope everything go's well for you! :O)