One month post diagnosis of people and dvt. Anxious husband
Posted , 4 users are following.
My wife went to A&E one month ago today and was diagnosed with both a bilateral saddle pe and a dvt in her left leg. She spent 2 weeks in hospital & has been on once daily Heparin injections (Clexane) ever since. She has a hospital appointment this week re going on oral tablet (warfarin) treatment. This is her 2nd pe after having one 6 years ago and she was thrombolised back then. I'm due to return to work on Monday morning. We have a 4 month old daughter at home. My main concern is regarding if she is now stable? Is it safe for me to leave her and return to work? Should the clots in the lungs and dvt started to dissolve and/or formed this protective coat over them. I've read that after a month the clots should have hardened and now unlikely to travel?? Any advice is very much appreciated. Very anxious husband and father
1 like, 10 replies
peter54321 jonathan24258
Posted
The key treatment for PEs is prevention. Your wife is on heparin, which will do the job fine. The warfarin will too, but will need regular monitoring to ensure it is at the correct dosage. Dosage can (and will) vary, especially at the start. That is typical and no cause for panic - they will just adjust dose and monitor. I personaly prefer warfarin to the modern drugs due to its known history.
The other thing about PE recovery is the emotional side - PEs have a habit of raising anxiety levels. Take time to recover and don't overdo anything and your wife should be fine. Any worries, go to ER (that was what I was told and I ended up there once with a false alarm and they were brilliant).
Please give you wife my best wishes and I hope for a speedy recovery.
All the best Peter
jonathan24258 peter54321
Posted
Thank you and thank you for your reply.. My wife was treated with Warfarin for a year six years ago when she had her first pe. They believed the last person was due to having a broken leg, going on a flight and being on the contraceptive pill. This time is much more vague. The newer medication was unavailable back then. We didn't have the same level of anxiety last time as she was thrombolised and all the clots were dissolved before being discharged. This time has been worse as we have a 4 month baby and also due to still having a saddle pe and dvt on discharge from hospital. Both very worried about her being left alone with the baby whilst I go to work. Wife has also suffered multiple fractures of the spine possibly due to being on a large dose of heparin injections throughout her pregnancy and for six weeks after. Has anyone experienced this on Heparin? Looking forward to moving on from the injections but also slightly anxious that the oral tablets won't be as effective as she's been on such a large dose of Heparin since being diagnosed 4 weeks ago. We are both hoping the worst is over and she is on the road to recovery. We suspect she will be on Anticolagants for life.
debby01 jonathan24258
Posted
Hi Jonathan
I was diagnosed with large bilateral pe's back in November 2016 and was in hospital for just over 2 weeks.
I am on Apixaban and will be for life as I have recently been diagnosed with Pulmonary Hypertension and waiting for surgery at Papworth.
The anxiety level went up ten fold when I was diagnosed as they had no idea what caused them, they did suggest that HRT tablets may have contributed to them.
The recovery period does vary from person to person, your wife needs to try and rest and listen to her body, as Peter said don't try and overdo things and if your wife has any worries then go to the doctor or a&e.
I hope your wife has a good recovery and any questions please ask, this site is great for support and advice.
Take care
jonathan24258 debby01
Posted
Thank you. It is a great site. Certainly had more advice on here than from the hospital who discharged my wife with no information other than keep taking the injections once a day and wait for an appointment for a hematologist to see you. I'm trying to encourage her to keep mobile which is not easy with a patient who has fractures in the back, a saddle or in lungs and a 4 month old to look after. How important is exercise? How much should she be doing? Don't want to overdo it, but at same time have read that walking is essential to stop dvts forming. Hoping the hematologist can give us more information than we currently have. Also worried about pulmonary hypertension and the root cause of the pe.
debby01 jonathan24258
Posted
Hi Jonathan
Regarding exercise, your wife really does need to take it easy and not try and do too much. Her body has been through a trauma and this will take time to recover from. It is difficult to say how much to do as everyone is different, she needs to listen to her body and only do a little at a time, pottering around the house, maybe going for a very short walk, it all depends on what her doctor / hospital have advised and more importantly how she feels, also baring in mind the fractures etc she does need to be careful.
Remember she is now on the right medication that will prevent her getting more clots, also if she flexes her calf muscles this also helps (they advise this in hospital if you are unable to walk around)
I understand your worry about Pulmonary Hypertension, I was diagnosed with this in May after 3 days of tests in Papworth, my clots hadn't cleared properly and have left scarring, The doctors there are fantastic and when I explained to them that I had not been feeling great for about 4 years and had every test going and in the end was told it was anxiety, they said that it is possible that it could all be related and that it is really difficult to diagnose,
Debby
jonathan24258 debby01
Posted
Thank you Debby. Sorry to hear you have been diagnosed with pulmonary hypertension. I hope it's being dealt with and have successful surgery.
My wife didn't collapse with this pe, she did with the last one. I guess that is a positive. Doctors give very little instructions regards to exercise. She didn't even have a heart echo before discharge from hospital which I thought was strange. Her oxygen levels and blood pressure were all fine although heart rate was around 90. She did have several CT scans and X-ray's in hospital as she also had a perforated stomach ulcer at the same time as the pe due to (the doctors think) to taking medication for the back fractures. So this time thrombosis was not an option.
She's definitely been through a rough time. Im disappointed that we were not given enough advice on discharge, which seems to be a common theme. Went to visit the gp last week to discuss the situation and he was very laid back and said the clots are now like a scab over a cut and therefore stable.
Going back to work for me is a real concern that she will be mostly left alone with our baby for hours. Had an emergency button fitted which my wife wears but still doesn't lessen the anxiety. Doctor was reluctant to prescribe anxiety medication.There's very little support out there for families who go through this.
debby01 jonathan24258
Posted
Hi Jonathan
There is very little support or information and doctors don't have a huge understanding of the condition and I think this is one of the reasons that it goes undiagnosed for such a long time.
The clots actually look like gristle if they don't disperse properly and cause scarring.
I am sure your wife will be fine with you back at work and she has the added comfort of having the emergency button. is there any family or friends that could help and maybe pop in to see if she is ok? The anxiety is one of the worst things, I know I lost all my confidence and hated being on my own, was scared in case something happened. Over time the confidence slowely returned and I started doing a little more each day. I think that the majority of people on here felt the same and over time things will improve.
jonathan24258 debby01
Posted
Yes Debbie I agree It definitely is a cause for anxiety.
My wife is more scared of her collapsing and our daughter left alone. My in-laws live nearby and some of them have promised to pop in, but they have other commitments etc so can't stay all day. We have asked health visitor about support but there is very little out there.
I'm sure once I'm back at work for a few days both our anxiety will lessen. I'm a teacher and have six weeks summer break coming up in 4 weeks, so that's a milestone to aim for.
I certainly agree with doctor's not knowing alot. You get much conflicting information regarding exercise and stockings. Two doctors told my wife not to bother with teds whilst another recommend wearing them. Her dvt is in the calve so I don't know how much use they would be. She elevates her leg on a footstool and on a pillow in bed. Again this was through internet research and not through any medical professional recommendation.
Wife is also worried about clexane injections as she was on them throughout pregnancy and it's suspected they caused back fractures. She is now on double the amount and petrified of getting more back fractures. Will be happy when she is stable on warfarin or similar drug. Gp also mentioned that warfarin initially can cause clots. Not very helpful!!
Thank you for advice and we'll wishes. Good to know we are not alone. Good also to read so many positive outcomes.
debby01 jonathan24258
Posted
Hi Jonathan
It is great that you have family nearby and that will be a comfort to your wife, I am sure that after a few days the anxiety will lesson and knowing that you will be off for 6 weeks will be a huge help.
I don't know much about Warfarin, I have been on Apaxiban and luckliy have had no side effects. No not a vey helpful remark from the gp!
Take care and I wish your wife well, at least there is advice and support here!
pacman debby01
Posted
Hi Deby just read the last part of what you said about not feeling well for 4 years. what were your symptoms? ive just been diagnosed with extensive small clots in both lungs but for years ive had this lightheadeness/dizziness and chest tightness with feeling that i couldnt breathe but thought it was my anxiety. only when i started coughing blood did they do a ct and found loads of small clots. hope youre feeling a bit better, it's a long recovery i know.
all the best