DVT and Post Thrombotic Syndrome, do you have symptoms and don't know what to do next?

Hi Karin, thanks for your reply. It certainly helps to share.

Mr Black is so aware that to have such a life affecting condition at such a young age is so damaging in every way, especially as the condition becomes worse over time. He mentioned that one of the reasons they had got the go ahead for research is that the operation is long lasting and improves the health over such a long period at great savings to the NHS. 

When the junior doctor who had no empathy or people skills at all, told my son that he would struggle with mobility and pain etc in the future and that there was nothing to be done about it, I really didn't believe it. I'm so glad I didn't give up as my son had a lot to deal with anyway after his operation and I was grateful to have something to hang onto once I started researching.

I have had a mild disagreement with the Thrombosis charity, previously Lifeblood, who said they didn't tell  people about stenting etc at St  Thomas' as it wasn't appropriate for everybody. At least if we get advice on a place where research is going on then at the very least up to date advice about the conditions can be

Hi Karin, I agree it probably is a matter of time and in the future things will change and referrals and info and procedures will be known about and shared. Frustrating to be in the lead up to that though. Mr Black said at last visit that even London Hospitals nearby are not sending them PTS patients who they know to be suitable as its a case of "this is my patient".

I can understand Mr B wanting to operate in this initial phase on good candidates as he wants good results so that the funding will continue and it will be nolonger experimental. It would be logical to publise the procedure to other hospitals so that they can refer the more appropriate ones on.

The NICE guidelines for thrombolysis are dated 2012 so there must be some known hospitals performing it.  Have said it before there should be a directory to get to know the "gold standard" hospitals for different specialties. We live a few miles from Papworth Hospital where lung and heart ops including transplants are a daily occurence, at some point this would have needed to be publicised so patients went there instead of your general hosp.

Would have liked to have gone to recent conference but will watch when available on Youtube. I rewatched last years World Thrombosis Day on Youtube as now a year later with so much having gone on since finding the good Guys it seemed more personal and positive. It was scary hearing some of the more difficult stories though, makes you feel lucky as you said.

Will let you know how things go on Monday. I can pm you my mob for Tues, could be a busy day though.

Sheila

Hi Ladies, thanks so much for the thoughts. Just heard that he was due to be 4th down and they were over running and they've just sent him home. He is frustrated and a bit bored and a lot hungry but he understands. So they will probably get him back next week and have him in first. Darn ! I was the one fretting a bit!. So I won't be down tomorrow to collect him.

Huge good luck for tomorrow Karin, will be thinking of you and fingers crossed for your daughter.

Sheila

 

What a stressful day for you both, at least he will get it over with rapidly next week. It's been a long haul! Thanks for keeping us updated Sheila.

Best

Nadine

Hi Karin, glad things are going to plan, will keep fingers crossed that she is suitable for stenting. We were in your position 11 1/2 months ago and definitely things continue to improve through exercise and wearing the stocking. He has swelling now but much less and pain and discolouration much reduced so keep up the good work.

It does you good to be under the right care though doesn't it?

Sheila

Hi Guys, stenting op went well today. He has been seen by Mr B and told things look good. He has already been walking about and feels ok especially after a meal. Scan tomorrow and coming home as long as all is still ok. Will take a little while to see what the results will show. One small scar by the knee and back ache otherwise admiring the view of the Thames. Sheila.

Fantastic news Sheila I was thinking about how it must all be happening for you this week. Really great he is up and about, and you can be sure they'll monitor the stents for any problems.  He must be so relieved.  Karin  the scans will hopefully be done soon, I had my first consultation mid August and scans were all done within 6 weeks and I'm expecting the surgery sometime in feb.  Hopefully all of us will get through this and be able to feel safe and pain free.  Sheila all the best for your son's recovery and hope he can get back to his sports soon. 

Best wishes

nadine

Hi Both, Back home yesterday, all looking absolutely fine, one tiny scar. Back ache lasted only a day. Scan on day one was great so sent home with anti coagulants and back for second scan in two weeks. Staff etc excellent, Mr B incredibly hard working and respected. 32 cms of stent in 3 places!! Wow. Even if it only makes 80% difference it will be worth doing. He can start the gym as soon as he wants except for the cycle as will do damage to groin stent.

Feel so relieved and fingers crossed for a long lasting change and improvement. No more clots!!

Best of luck for both of you. Will keep you informed and would love to hear your news.

Good luck, Sheila

 

Hi All, Just to up date you about Rob post stenting. He developed a pain in his leg a few days after op. Went up to London and had a scan and they found a clot forming on the margin of the stent. He had a small op, venoplasty, to remove  the clot through a vein. He is fine again and as long as nothing else wrong goes for next scan at end of month. He has an extra pill to take daily which hopefully should reduce the likelihood of platelets sticking together. Belt and braces as has blood thinning injection too. Will go on to Warfarin soon.

Going away for a few days soon, prob not in touch until next year! Stay safe! Fingers still crossed.

Sheila.

Hi Amy, just got back from a bit of winter sun and catching up with notifications. Glad to help with info on PTS. Rob has had 2 visits to G&St T to follow up on his op and the small clot which started on the margin of the stent. They are happy they have removed it and have scanned again and he is on anti coagulents and platelet med too and ready to go on Warfarin in 2 days. He is happy that things are developing well, it will take a while to see how much difference it makes but feeling optimistic. The treatment is not just for the symptoms of PTS but also the long term health of his circulation.

 Mr B will explain it all very well and it is obvious that the treatment is designed for each patient as the problems are so variable and the positioning of the stents is important. We felt very lucky to have this treatment available now.

You may have read about my son's UC problems which came out of the blue and resulted in 2 bowel perforations and emergency ileostomy. That is all behind us now and his j pouch is very successful, as I'm sure your husband's is. Rob's DVT & PTS is as a direct result of the first surgery to remove his bowel and create a stoma. He was sent home without anti coagulents and no info about avoiding a DVT. He went elsewhere for his J pouch. We didn't realise at the time that his DVT was because he was upto 3x more likely to clot with UC.

As you may have read the experts at Guy's say that the body is best recovered after 2 years from the DVT as the body has healed most especially if you exercise and the compresssion stocking helps to reduce the symptoms. So hopefully you will continue to improve, do you feel that you have been given enough advice? Were you checked for an underlying cause apart from pregnancy?

I will keep everyone posted about results as this is such a small and new treatment that is being tweaked continuously and Rob is part of the research group.

Happy New Year, 2016 is going to be good, fingers crossed.

Sheila

Hi Sheila

Thank you for your reply. I'm glad things seem to be going well for your son after the procedure.

My husbands UC and j pouch were quite eventful too with a perforation, an abdominal bleed and an abscess, but currently things are going well for him - he's cycling to work and running half marathons in his spare time. He's spoken to many people who are going to have the same procedure, and I really think like DVT/PTS, there's something good about knowing there are other people who have been through it too.

As for my PTS it's a very new diagnosis as I only saw a haematologist a few weeks ago but at least I know what I'm dealing with now. I am very happy that there is a dedicated thrombosis centre at guys as I think it's important to have specialists leading the way in this field. Despite leg swelling and pain I have been trying to walk 2-3 miles a day (from when I could walk), and just recently have increased the pace to a slow jog which shows progress and I hope is helping build up the collaterals as you say. It certainly makes me feel better. It's actually quite amazing because when you look at my leg you wouldn't think it would do so well.

I look forward to your news and I'm so glad I read your post so I'm now aware of the leading centre for thrombosis in the UK. I'm glad you spread the news.

Thanks

Amy

Dear Sheila,

I have just been catching up on Rob's progress and am really sorry he had to have an additional procedure after everything he's been through,  I am so relieved that they got rid of the clot so fast and that he is really now on the road to recovery.  Those first 6 weeks seem to be a very delicate time.  Really hope he is able to carry on with all his pursuits very soon.  I am still waiting for a date for my op - I need to see the haematologist first, but I was told op would be within the next 3 months.  I am nervous about it all, and hoping that it will all actually happen.  I am desperate to get a new job as conditions at my present school are causing me a lot of stress, we want to buy a house and also we have been wanting to start a family (the dvt 2 yrs ago stopped us in our tracks) and I am hoping that I can still do all these things when it's safe to do so.  I feel like I've had to put life on hold to an extent, have been fighting to get treatment for so long.  I just hope that 2016 brings all of us along a bit further towards our goals!  Thankyou so much for sharing Rob's journey with us all it is enormously reassuring to hear how other people are coping, especially as the stenting is such a new procedure. 

All best wishes to you all and happy new year!

 

Hi Nadine, Happy New Year to you too. Thanks for your lovely reply. Yes it was a pain, literally, but it just shows that the treatment has to be tweeked for individuals and so far it has worked and no more glitches. He was able to pick up the signs of a blockage very quickly and they dealt with it asap. He feels and looks well and he is exercising but not pushing himself too far as yet.

You have a lot on your plate at the moment, it helps to have something positive to look forward to though doesn't it? I wish you well in your appointments, they are really good at answering your questions and help you plan the order of things.

Good luck for the future, keep us informed.

Sheila.

 

Hi All, Hope you peeps all doing well.

Rob is feeling fine, no pain, bruising all gone even the injection ones! Has been south for haematology tests, all good. He has started to push himself abit on the exercise stakes and the results are good, no swelling or pain in the left leg. 6 week scan v soon, so fingers crossed. On Warfarin for approx 6 months. 

Keep in touch. Still feeling lucky.

sheila.

Hi All in this discussion. How is everybody doing? 

We are feeling very positive as Rob's leg is progressing very well, so far no swelling and pain and he is back to doing lots of exercise and even cycling now. I hesitate to say it is a cure but I really think it is. We don't really have an idea of how things go in the future with regard to the stents as there is so little comparison but fingers crossed that all will continue well. I suppose being a trial it is a matter of wait and see. 

Let us know when you have news.

Regards, Sheila.