Pulmonary Embolism News And FAQ

Coping With a Pulmonary Embolism - Life As a Survivor

6/28/2014

"We know what is wrong. You have blood clots in your lungs." These are words that survivors come to be grateful for and to hate. As a survivor we are often thankful that we finally have a diagnosis and a treatment for symptoms that for many of us have been happening for an extended period of time. Others are thankful to simply be alive. They were the ones that collapsed and were returned to life by acts of God, fate, and medical miracles. The doctors patch us up, test us, clear us, and send us home on anticoagulation and filled with questions.

As patients we start off with many unanswered questions. Why did this happen? How long is recovery? What are these nagging symptoms? We are frustrated when we don't have answers to these questions but these questions aren't the real challenge. These questions will be slowly answered by hiring new doctors, asking questions over and over again, and reading materials from patient support and advocacy groups. The real questions, the ones that are truly a challenge are the ones that nobody can answer. "What do I do now that I survived?" "Why did I survive?" "How do I find faith in my ability to survive?"

If these ruminations sound familiar you are a survivor. Know that your brain is an organ. If your brain survived your PE without any symptoms I would be in shock. Your lungs, heart, body, and brain are all affected when you have clots in your lungs. Common complications include panic disorders, depression, and anxiety. Feeling lost and/or afraid is normal and in many ways these feelings are a healthy part of your recovery.

So, what to do about them? First, let your doctors know that your brain is in need of healing. You may benefit from starting some medication to ease your symptoms. Councilling may also help you to deal with surviving. I used both of these techniques to help myself heal.

Here are some additional methods to assist your mind, body, and soul adapt to being a survivor:

Track your growth so you can see progress. A fitbit can do the work for you these days.
Ask your doctors if massage or Yoga would be safe and then try them out if your medical team okays these activities.
Try meditation. Search for "The Mediation Podcast" or "The Meditation Oasis" as both have free recorded meditations.
Try an app called "Breathing" to practice deept breathing that will be calming.
Realize your strength. You survived! You are not weak. Your body wend through the ringer and was OK. You can and will get through recovery.
Try a support group. Www.dailystrength.org has a great one.

These are saguaro cacti and other fauna of the Sonoran Desert. Let them remind you how to survive. When the times are rough they live off water that they stored during the rainy years. They grow in harsh conditions and are amazing plants. The rough environment changed them into the wise old men of the desert. Survive and thrive as the saguaro does and find your inner strength and beauty.

26 Comments

Julie Harvey

6/28/2014 11:42:38 pm

Love this site. I am a survivor. As a nurse practitioner, it is difficult to get answers because docs don't have them and they assume I do because of my career. I was feeling great for 3 days about 3 months post embolism and was off oxygen, day 4 came and my oxygen levels dropped and I was back on O2. So frustrating! 2 weeks have gone by and starting to feel good again. Your blog help s me cope. Thank you.

christine mattson

6/29/2014 09:48:01 am

I too am FNP and work with many other physicians and NPs. No one has any good answers. I am taking three months off work. I tried to return 1/2 time and did ok but was exhausted. Then my work site would not be flexible. How are you doing it? I was dx May 6. I have seen cardio but not pulm yet. Off 02 most of the time. Feel very scared.

7/27/2014 03:37:37 pm

I was off work 4 weeks, then eased back in. it was and sometimes is still exhausting. I had PE 3-10-14. I have now been off O2 for 2 weeks. had my first anxiety attack yesterday for about 15 seconds. Had to talk myself down and it was during a walk to try to build my endurance. Really didn't see that coming, so had a few tears (not common for me). I felt so silly for getting scared, anxious. then I remembered comments from this site and thought nice to know I am not alone! Do you know cause yet? That might help you cope too. I am not sure of cause yet, but think r/t Nexplanon, waiting 6 months before doing workup due to warfarin. My echo was fine, PA pressures good, So just waiting for clot to be completely gone, Have more up days, but still sleep hard from 8:30-5:30 (never used to sleep so long),,. Hang in there, I can truly say better days are coming.

Lena Welch

6/29/2014 09:52:11 am

I used time from FMLA to ease back in. I was off for two months and then started back part time. It took two years for things to become normal. A lot was just surviving. As I healed I gained confidence that I hadn't had pre-clot. I am a survivor and I am strong. It took time, counseling, and medication to get there but it came in the end.

7/27/2014 05:11:37 pm

Better days do come! Thank you for that wisdom. I found it comforting to know that I was normal and it would get better. I am sure other readers feel the same way.

Finding a cause can be difficult. I have a list of offenders on my list but without becoming omniscient I will never know which one or ones were the culprit.

Jessica

9/12/2014 11:57:12 am

i just had my pulmonary embolism on august 19th 2014, im in the begining of my recovery, im terrified from what i read on the internet it says most people die within 4 years from having a pulmonary embolism, im only 25, i have 2 children, i just got married, they say mine was caused by my birth control.. im strong but lost

9/13/2014 12:46:13 am

Jessica,
Don't get stuck on thinking you have possibility of living only 4 years more. I now know people who had PEs from contraceptives, and are now 10+ years since their PE, not on blood thinners and they are just fine! Focus on the fact that you are alive, recovering and a SURVIVOR.
Are your docs checking you for any clotting problems?
I see a hematlogist on the 24 to find out if I can safely be taken off blood thinners.
Please keep in touch, your first few months are the hardest because of all the info you read, hear and worry about. I did too! You are normal if you are freaked out and overwhelmed. I have a 10 year old son and a disabled spouse, so am sole financial support to us, so the thought of not being here for them hit me hard too. Take you thinners and trust that off of the contraceptives you will likely not have any more clots.
Hope I helped.

9/13/2014 03:04:30 am

Thanks Julie! i really do appreciate you taking the time to respond to me. I have a doctors appointment on the 18th (next thursday) i will talk to my doctor about clotting disorders. i figured they would have check for that in my 2 week stay at the hospital? lol im feeling really tired, and just worried every little pain i get in my chest im worried its happening again, and im on a new drug called xarelto so i dont have to go get my blood checked every week. im just hoping that now that im off the BC i dont ever have to worry about this again, and i live a long and healthy life.

9/13/2014 12:46:30 am

9/13/2014 12:46:54 am

Julie Harvey link

9/13/2014 12:47:25 am

Michelle Evans

3/16/2016 12:56:02 am

I was diagnosed with multiple clots in both lungs including 1 that came close to infarction my pulmonary arteries..killing me..I was in ICU for 8 days and because of an insurance glitch I was not insured for this month...my insurance agent is sppealing this .January 2016. .I am an RN in my mid 50s with asthma and am feeling like I am not recovering as quickly as I should This site is really helping I am also having trouble focusing when I get tired and have poor endurance...some days I can breath well but then I will be back on o2 and on bed for another 2 days. My job is being patient about if I will return but I am wondering if I'll make it back..the asthma is not helping..nor the windy cold rainy days..at least I have a supportive group of friends but it is frightening as it is not in my control ..I meditate and have been doing this and breathing for years for asthma..I was glad to know the brain also can be involved.my o2 sat was 64 when I walked into the ER. I guess I was on my way out but got there in time. I would like to know as much as I can as I feel my Dr thinks I make up some of this..I am taking him this article. Thank you for being here. It is nice to know that the random chest pain which I had in the Hospital are normal. .sometimes they are here then gone then back again.

Michelle

7/31/2016 04:23:12 pm

I am now on disability and am very slowly having better days with not good days in the mix too Finally feel up to a tread mill...I have severe asthma that is not helpful lol but I am seeing some improvements. Yesterday my partner told me I have more energy and life than he has seen..it felt lt good and I know that there will be more good days

Tony

7/31/2016 10:44:38 am

Double P E to right lung. 1 week in a HDU ward in hospital here in Australia. Found this page and it has been helpful. Had 3 months off work and returning now but so tired with no energy, it is get to read I am not alone with the questions but some answers here on this site. Keep up the good work. Cheers

Lena

8/14/2016 12:28:30 pm

Keep hanging in there!

7/31/2016 05:17:14 pm

Hi all, I just want to give some inspiration. I am now 2 years post PE! I still get tired at times and easily winded at times, but I am able to work full time and enjoy each day! Follow up to my comments 2 yrs ago, my hematology work up completely negative. Clot caused by nexplanon. I am no longer on anticoagulants and feel good all things considered. Kepp the faith, it does get better. I still occasino ally get claustrophobic and probably a little PTSD when I get a cold, but my O2 sats don't drop below 92%, so, that helps me with those anxious times.
Feel free to converse with me, we all need each other and we are SURVIVORS!

Tiffany

10/7/2016 03:06:44 pm

Julie,
Not sure if you will even be back on to see this, but I thought I'd give it a shot. I see you wrote there are times you still get winded and tired easily. I'm a year out from my bilateral saddle embolism and still get mild shortness of breath and chest pain. I've had numerous follow-up tests done. Have you had any luck finding out why these symptoms linger?

10/9/2016 09:00:19 pm

Hi Tiffany
I had my bilateral saddle block in January and today I actually felt like I once did .Last time this happened I went a movie and shopping and spent 4 days gasping and recovering..but it is getting better I have asthma so it doesn't help I had an air purification system placed on my heat pump and leave it on and have been much better. I have noticed I get very short of breath if I am fighting off a cold..and need naps daily..but slowly I am improving I am a nurse so I have watched my o2 sats when I feel sob..they used to be at 83 to 85 and take 15 min.to reach 90..now I stay at 88 to 89 and hit 93 within a minute or 2 I do not wear o2 which I did the first few months . I am sure you are having similar small but steady improvement. I was told by my Dr to expect 3 to 5 years as the worse the PE the longer the recovery Hang in there It is happening..just by the mm instead of yard.

10/9/2016 09:55:05 pm

It is my understanding that it is due to healing and some long term damage, so like any weak spot it has to be reconditioned. I am now 2 1/2 years out and get chest pain at times with exertion. Had full cardiac work up in Dec 2015 due to this and tachycardia, found out tachycardia was due to claritin. I am very sensitive to meds. Ugh! Scared me all over again.
So, I think a lot of it is just the body trying to heal, taking upwards of 5 years. I did have a client with saddle embolism that went to a hospital in Ohio and had them cleared out of his lungs. Felt much better after. He just kept having them prior to that and several other issues compounding.

10/9/2016 09:58:44 pm

I agree, long long recovery. Cut the baby steps, they are what helps on the tough days. My last cold, 3 weeks ago, I was very winded but my O2 sat never went below 95%, this was a huge improvement and exciting. Also he's keep me from getting anxious to know my sats are good, so just roll with the punches. Hope you continue to improve, we have made it this far!

10/9/2016 10:32:14 pm

Thank you both so much for your comments! This really makes me feel like I'm not alone. My docs treat me like I'm just anxious and should be feeling totally back to normal by now. Not only did I have a saddle my clots were large and I had severe enlargement of my right ventricle. Tests show my heart has healed and lung function is above average but when the chest pains come back it really scares me. When it's humid that is really rough on me as well but my O2 stays between 95-99. My heart rate never went back to normal even though my heart healed and I never got answers to that either. Your replies give me hope that I'll still continue to recover.

10/10/2016 03:04:10 pm

The chest pain is what suprised me the most..they worked it up several times in hospital and said it is part of the post clot stuff..interesting aside..When my sat is dropping and I am tired I get screaming back and hip pain..not sure why but it is very much relayed

10/10/2016 04:48:40 am

Hello fellow Survivors. 2 large clots 1.8 and 2.4 in size plus 6 smaller clots in the right lung. My question.
Fatigue is my enemy at this time . Have been allowed to return to first job but not second at this stage. Fatigue is killing me pain in every joint like the flu. Really bad though hips and shoulders and calves . It had been 5 months since Advent. Any ideas . Cheers Tony

10/10/2016 03:10:26 pm

Hi Tony
I found when my sats start to drop or I get SOB I get screaming back and hip pain. .weird but seems related Rest helps esp lying down for an hour..that's what I've found..I used my sat moniter a lot to figure out what low says felt like in my body
Hope this helps

Eileen

10/11/2016 10:26:12 am

I'm so happy to have found this site. The comments are helpful and encouraging. Thank you all.

This week is a year since my diagnosis with many large clots in both lungs. I do have questions; my doctors seems to know little about the condition. I am on Xarelto with no side effects. Through knowing Factor V Leiden was a problem for a second cousin on my father's side, I asked for testing and I also have the mutation. However, Dr. Said there still had to be a trigger...I'm assuming it may have been a few days of very emotional upset that was the trigger.

I have always been an active person so am working on getting back to,activity BUT find a day or two of light activity brings on congestion, pain in lower back/lung area and tiredness. I still sleep up to 10 hours/night.

The comments are encouraging to keep on recovering, not get concerned with a return of symptons and focus on staying positive and happy.

10/11/2016 11:58:22 am

Hi Eileen.
I've been able to work my way back to daily exercise but nothing strenous. I find I can only do a tough workout a couple days a week. I'm glad you mentioned sleeping a lot. I'm just barely over a year in to recovery and on the weekends I'll sleep for 10 hours. Only reason I don't during the week is I don't want to go to bed as soon as I get home from work. I've been worried about that recently because for some reason I thought that would change once I reached the one year mark.

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Coping With a Pulmonary Embolism - Life As a Survivor

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