hi all I’ve just been diagnosed with clots in my lung. They have given me blood thinner and I’m going to be contacted by the anticoagulant team. I just don’t know what to expect, I’m very scared and overwhelmed. How do you carry on a normal life. Am I in danger!, what will happen now. Sorry about the rambling just needed to get it out there. Can anyone share their stories with me and show me there is life after diagnosis. Many thanks
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Cimmy
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Welcome to the forum Cimmy and hoping someone will be able to help. Just wanted to say hello. Xx
hello and thank you for welcome. I must say I’m feeling very anxious and just wanted to hear from people with similar diagnosis and how they got on
I can only give a friends experience. Once she got the treatment she has led a full life with no further issues. Sorry I cannot be more helful. Wishing youva speedy recovery.
thank you for your kind reply. I think im just so overwhelmed with the diagnosis and know im having the best treatment, just found the whole diagnosis process so scary. It give me hope knowing your friend is living a full normal life. Take care
I think a lot of members would say they were over whelmed when they got their diagnosis. I know I was ,I had never heard of bronchietasis. Xx
may I ask what bronchietasis is as I’ve never heard of it myself. I hope you are getting the very best treatment and feeling better. Take care x
Bronchiectasis is a long-term condition where the airways of the lungs become widened, leading to a build-up of excess mucus that can make the lungs more vulnerable to infect. That a simple explanation xx
oh my goodness, sounds appalling, and there is me whinging about a few blood clots. I’m so sorry your going through this. I wish you all the very best
Sorry to hear you have been diagnosed with blood clots in your lungs.
I went through this back in 2017 when they kept me in overnight on the respiratory ward.
Before the crisis when I dragged myself into a and e I had been having symptoms which were just annoying rather than warranting a trip to a and e like a dry cough that wouldn't clear up and shortness of breath.
On the day of the crisis when things became severe I knew I was in trouble and I had dragged myself into a and e on the bus and had blood tests and a ct scan and a chest x ray and a peg on my finger in the triage nurses office on arrival there.
When I was discharged home I had asked the nurse about what exercise was safe to do and she said walking was great and if I didn't feel very well or puffed then to stop!
At first I was on 2*15mg xarelto tablets which suit me great as I can get on with living my life rather than being chained to warfarin clinics!
I had decided whilst I was on the 2*15mg tablets a day that I was going out to the work Christmas party and thst I did and I ate a banana and then took my second tablet that day as prescribed as I had wanted to be out living my life as I see fit!
A few months after the clot I had an outpatients appointment at the chest clinic and had a spirometry test and all was fine and I ended up discharged from the clinic and I had cried with relief!
Nowadays I just take the 1*20mg xarelto tablet a day and get along fine with them.
The surgery call me in for blood tests yearly and last week they told me the recent one needed repeating and I had been terrified!
I did ring the surgery like they asked me to to sort out another one which I will be going to this Wednesday coming!
One of my friends said to me that if the blood test showed anything nasty they would have contacted me right away for an urgent appointment and there was probably a mishap with the sample after it was taken rather than anything being seriously wrong!
Thing is with health you always think the worst don't you?
hi turnipgirl thank you for your kind reply, it’s is so scary and overwhelming when your body starts playing up. You have been through the mill haven’t you, I’m sure your friend is right, if it was urgent they would of called you straight away, but your so right you do always go to the worst case scenario, I suffer really severe anxiety which adds to the mix. Anyways thank you for your reply it’s so helpful knowing your not alone even though you feel it sometimes. All the best and please let me know how you get on. Take care
Welcome to the forum. I know we have had previous posts from members who have had lung clots and lived to tell the tale. Doctors seem to monitor them regularly to make sure they are behaving themselves. You might find info by going to ' Search Health Unlocked' in the top right hand corner. Alternatively phone the Health Unlocked nursing team. I hope someone will be along soon to give you their number.
The Helpline number is at the top of your post.
thank you, I will give them a ring, I feel I need to talk to somebody that will understand. I’m so overwhelmed at the moment. Hopefully things will settle down once I’ve digested all the info many thanks
My father had blood clots over 24 years ago and is still doing well. He was on medication for 6 months and then was deemed to be fine. He was warned that if clots occurred again he would then be on blood thinners for life. Subsequently he did develop blood clots again and is now on medication for life. He’s about to turn 87yrs and is fine on medication. The only complication is when he is required to have an operation . But the hospital manages that and he has had emergency and planned surgery over the years. He does have to be careful if he cuts himself because he will bleed lots. But again with right treatment it does stop bleeding.
Hi Cimmy Welcome.
I had clots in my lungs when I was 15 years old and was treated well . It was very hard and I did feel pretty rough. But I was treated well and recovered.
I did have to stop sports for a bit but was able to return once things cleared up.
I was unfortunate to have another 2 episodes of clots at 18 years and 20 years which has now resulted in long term anticoagulants but life does go on and yes it can be tough but I am 46 years old now and manage things well and still active.
When the clots come it can be worrying as yes they can be dangerous but if caught early and treated all will be fine .
Make sure you rest when you need it and seek help if you don't feel well.
Wishing you all the best 👍
hi and thank you for your kind reply, I am so overwhelmed at the moment and feel unwell but I’ve had such a great response to my post and your replies are very comforting and have settled my nerves somewhat. I just need to digest what has happened and move forward in a safe and positive way. Take care
Yes it is very overwhelming and I remember being so down feeling rather ill and not knowing when I would feel better. I didn't have this forum at the time . It's great xou can share and get feedback now it helps mentally to process things knowing your not alone
X
There's a girl I'm friends with who had clots when she was only in her 20s so it's not a rare event!
There's a girl I'm friends with who had clots when she was only in her 20s so it's not a rare event!
It's not so rare at all now but after many years I finally found out why and it also helped with understanding. Clots at any age can be frightening so having support helps .
Hi and welcome Cimmy. Sorry I can’t help you but I’m sure someone can put your mind at ease x
hi and thanks for the welcome, I have had a great response to my post and feel somewhat comforted. It amazing how strangers can be so kind with their time and knowledge. Take care
In 2012 I was having chemotherapy and found I was getting breathless and my legs were swollen. I went to my GP as I also was getting pains in my chest. She sent me straight to our local hospital. After some hours in A&E, I was admitted. The next morning I had a CT scan which showed multiple clots in both lungs. I was kept in for 5 days and was given blood thinning inj. Once I was discharged, I was put on warfarin for 6 months.
After that, I was fine until 2020 when my breathing became very poor. Because of covid, it took until August 2021 for me to be diagnosed with an immune problem with my lungs. More CT scans showed I had more clots on my lungs. I was in The Royal Brompton for three weeks, but that was related to more than the clots! I now take daily blood thinners (Rivaroxaban) as well as a whole host of other tablets.
It’s normal to feel overwhelmed. Do you know what caused your clots? Talk to your team for reassurance.
Good luck.
hi and oh my goodness you have been through the mill, I can’t thank you enough for your kind reply. They don’t know what caused my clots, they checked my calves and ask me if I’ve been on a long haul flight but the answer was no. I am so overwhelmed with it all and hopefully things and my anxiety will settle down. I’m so glad I found this forum, the replies and kindness have been so welcomed and has e put my mind at rest somewhat. Take care and thank you
I had clots in both lungs in 2019. I opted to take Apixaban twice daily which I will be on for life. I have also been on high dose steroids since 2019 so my skin is paper thin and I bleed very easily. At first I had several nose bleeds but things gradually settled and these stopped happening. My arms are the worst affected area and used to look a proper mess at times until I started to wear lengths of tubigrip on my arms for protection. I call them my bumpers. You can buy a box of tubigrip on Amazon and it lasts me ages. I have had no recurrence of the clots.Best wishes
Cimmy in reply to
hi and thank you for your kind reply. I’m at home as It was deemed that this could be managed at home rather than a hospital stay. It’s all so scary and I suffer with severe anxiety which just exsasabates everything. I’m on 60mg blood thinner daily. Do they take time to work?, I was hoping to feel better by now. Just feel so overwhelmed. Take care
Turnipgirl in reply to
I had a bilateral pulmonary embolism as well clots in both lungs which had built up over time until there was a crisis and I dragged myself into a and e.
My friends can't understand how I managed to walk into a and e seriously ill!
i wish medical people were better trained in communicating with patients. Just leaving a person with no information only makes them worry. Tactful reassurance would go a long way. I hope the people here who have had blood clots have helped you. Do stay on this friendly forum.
hi and thanks for your kind reply. They did go over things with me but it all went over my head that’s why I needed to turn to a place where I could communicate with people who have had the same problem and I’m so glad I found this forum, people have been so kind and reassuring. Take care
I know the communication is rubbish isn't it?
I got a text message from the surgery to say I needed a repeat blood test and I was terrified so I rang them up and asked them to explain and they said not to worry there probably had been a mishap with the sample after it was taken and if the test had showed something nasty they would have rung me ASAP and got me in urgently!
Phew! and Grrrr!👿
It's so frustrating isn't it when things like that happen?
hi,
Please don’t worry too much, my husband had 3 very large blood clots (pulmonary embolism ) . He had been having problems with his leg, he’d seen several doctors about it but was dismissed as just fluid retention but after a few weeks his whole leg swelled up, I spoke to the doc who prescribed apixiban immediately and sent him toA/E, he had a scan and it was then diagnosed with PE, they just upped his blood thinner and sent him home, when I queried this they explained that by keeping him in hospital it could make it worse as you just sit around in bed or a chair. He’s fine now, he has to stay on blood thinner for life. This was 5 years ago and he’s had no more problems.🤞
hi and thanks for your kind and reassuring reply, I’m so glad your husband is ok, I too was told it was better to manage at home but I find it quite scary and my anxiety is so bad. They don’t know where my clots have come from, it’s just so overwhelming. Wish I had asked more question I just came out of the hospital blank. Stay well and take care
Hello Cimmy
Welcome to this forum. As I think you will see it is a very friendly and supportive group. The vast majority of people who get pulmonary emboli make a complete recovery. Bodies are very good at sorting it out, go into clot busting mode and clear up the debris. The anticoagulant treatment is to prevent any more.
A minority have residual damage, but it is rare. I am one of them, hence the Zebra Avatar. Zebras are rare diseases in doctor-speak. Just keep gently pushing the doctors if you are concerned that you are not recovering. It is difficult to gauge that as it is very individual. And recovery can take months.
All the best
Kate xxxx
hi and thank you for your kind reply, I’m just overwhelmed with it all, it’s a lot to take in and I’m just scared and feel very vulnerable. I think I was hoping once I started the medication I would feel automatically better but I still feel unwell and this in turn ramps up my anxiety so I’m in such a quandary. Just hope I feel better in a couple of days, my body has taken a bashing in the last couple of day, what with scan with dyes pumped into my body and pain in my back and upset stomach the list just goes on and on. I just want to feel normal (whatever that may be) I’m going to try and look on the positive side that I’m on the right path with the medication and things will improve soon. Thanks again and take care
Hi Cimmy and welcome to the site. I cant help with your query except to say that my Mum was on blood thinners for years with no adverse effects and reading through some of the replies it looks like you will be fine. Its always a shock when first diagnosed with a problem and we all panic at first, but read up as much as you can so that you know what you are dealing with. I hope you feel better soon x
I know a gentleman who has clots on his lungs and still teaches dry stone walling! He does not do any living but had eagle eyes and you can hear him yell across the area "Turn it round!"
A friend had breathlessness and was very quick to tire if walking around.
His GP misdiagnosed it as heart failure and told him that it was too bad because he was overweight and just had to die.
A heart expert reviewed his x-rays and noticed a spots in the lungs which were just included in the x-ray by accident.
This was eventually explained as a blood clot in his legs that was probably caused by many long distance flights. These clots were gradually breaking up and his lungs were being blocked by fine particles of the clot in many places. Don't forget a long bus trip is also a cause of clots and even excessive bed rest with restricted movement can be a cause.
My friend was put on warfarin and monitored closely while the clots were dissolved. When there were no more clots he was told that he should be right for the future. After 12 months the symptoms returned and x-rays again revealed more blood clots. He was put back on Warfarin for the rest of his life with regular checks to make sure his cure is really permanent. He is now told to expect a normal lifespan but be prepared to cope with injuries that will bleed.
The morals of the story are that you always get a second opinion on bad news and presume that you need regular and reasonably frequent follow up examinations to ensure the result is permanent, If its a serious condition a second opinion even on good news is probably a good idea. Early detection is a key to many cures.
I have just been diagnosed with emphysema and I am currently arranging a second opinion from a specialist and a better GP. My GP says there is no treatment available but Dr Google says otherwise so I am looking for a REAL specialist with a sharp scalpel or a set of "lung valves" OR anything else
thank you for your reply, I think my clots are because I’m not very active and they can’t say why I have them, my gp is useless he just kept putting me on antibiotics without even seeing me, I eventually went to A&E where I was given blood test scans and a though going over for which I’m grateful for. I’m now under an anticoagulant team and on blood thinners so hopefully going in the right direction. It’s been very scary and overwhelming. I hope you get the treatment you need and make a speedy recovery. Take care
Hi. This happened to me, 2 and a half years ago. It was horrible and I developed PTSD afterwards.I had blood thinners for 6 months.
I was exhausted and anxious that it might happen again.
I drink a lot of fluid to keep hydrated.
And rested lots - I couldn't do much anyway - just be aware of your body and rest.
When it happened to me I was absolutely terrified as well!
I too am terrified, just can’t stop mulling over it, I’m exhausted and terrified, every ache or pain I make into something it’s not. Just want some peace and as restful mind
It will get better over time as it did with me.
I was the same. I had sepsis and pnumonia in January. I could have died. I was in ICU for 3 days then a chest ward for a week. It takes time to get over it. Just take each day at a time. I got overwhelmed with information, so unfollowed Facebook health groups. Try and distract your mind when you start to overtaking and recognise any triggers.
Hello Cimmy,
I had blood clots on my lung in 1987, I understand how shocking that can feel at the time, but I’m still here and am leading a good life!
I was later diagnosed with an autoimmune condition, so am on lifelong warfarin.
Generally, short-term anticoagulants are prescribed. Where I live (in UK), warfarin is prescribed, but the drug can differ depending on which country you live in. The condition often rights itself with this short term (6-12 months) treatment and most people are never bothered by blood clots again. I hope this is so for you.
I would suggest that you write down all your questions and discuss them with the anticoagulant team at your appointment. You should be given information leaflets on “do’s and don’ts while you’re on warfarin”.
You can always come back onto this forum if you have any unresolved or unanswered queries after your appointment I have always found everyone on here friendly and helpful.
I can honestly say that my life is not really affected by my blood problems; once you are on the right dose of warfarin you’ll be on an even keel. The regular blood tests are a bit of a pain, but in the bigger scheme of things, not that onerous.
I hope your appointment goes well, please try not to worry.
Hi and welcome to this friendly, funny and informative forum. I have no experience of blood clots but do know how overwhelming an initial diagnosis can be. I see lots of members have posted so please be reassured that there is help and support here.
Debs_ALUKPartnerBritish Lung Foundation
Hello Cimmy and a warm welcome to the forum. As some of the group have mentioned, you can call our helpline for advice. Our Clinical Team of nurses can answer your questions and talk about what is worrying you. We are here Mon- Frid 9am -5pm.
asthmaandlung.org.uk/helpli....
Hope to speak to you soon
Debs
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