And the new forums are off and running. Somewhere in their creation an odd stroke of synchronicity has occurred. Just days after opening these forums I found myself chanting, "please let it be asthma" as I am thinking, "I think she has asthma, right?" This was earlier today I find out that a friend was taken to the ER by ambulance because she couldn't breathe well enough to make it to the car.
If you have poked around HubPages or Clot Spot you likely know my history. July 18, 2008 I joined the 66% club. The club that consists of survivors of pulmonary embolism. That membership is what brought the flashbacks tonight as I found out my friend had joined the club.
I find myself mixed with relief because once at the hospital (if one gets there alive and stable) one will often survive the clot, sadness as I remember the struggle for normal through two years of recovery, and shock as I suddenly recall what is feels like to be panting trying to walk 20 feet and yawning when there isn't enough room for air in my yawn.
How many of you have been in the friends and flashbacks scenario? What was it like? How did you help your friend through recovery without scaring the stuffing out of him or her?
Let's see what you all know! ~Lena, owner of The Clot Spot
I just had bilateral clots last week after a cervical neck fusion. My dad died after surgery from clots so needless to say being in the same situation as my dad was profoundly scary. As I am an asthmatic I kept attributing my shortness of breath to asthma. I did have a cough but thought it was a touch of pneumonia. Thankfully, a call to the pulmonologist got me to the ER. Going to be a long row to hoe I fear but so very grateful to be alive!
Post by melekini49 on Oct 24, 2015 11:03:49 GMT -5
Hi, I am just out of the hospital after being diagnosed with PE in both lungs and a clot in my left calf. I was on heparin in the hospital and warfarin right now. I have already been for one test to check the levels of warfarin in my blood. Meanwhile I have an appointment to see if I have breast cancer in an area where I once had a breast. Evidently something showed up on the Cat scan. I am very lucky. I had gone to the doctor originally because my asthma, I thought, was so bad. After being on prednisone for a week I had a recheck. Things were worse. The doctor sent me to the hospital in an ambulance because we thought my asthma was out of control. I guess that saved my life. I was in the hospital for 7 days and for the first few days I was on the heparin alone. Then they added Coumadin. Finally after many, many, many blood tests I was able to come home. The shocker is how tired and exhausted I get! It reminds me of when I was going through my breast cancer and treatments 15 years ago. I was very happy to find this forum and to find out that exhaustion is a part of the recovery. lwelch,
Post by buster2891 on Dec 14, 2015 18:34:26 GMT -5
Hi all, just over 4 weeks ago I experienced a massive clot over both lungs and in my main artery. At work on the Monday I became out of breath just from walking, as I had a cold I just thought I may have developed a chest infection or similar. I then went home and went straight to bed as that seemed the best thing to do. I woke up on Tuesday and felt OK, drove 45 minutes into work, on arrival I felt our of breath again, 2 hours later I walked out for some lunch and immediately I could not catch my breath. Unsure what to do, I called my GP, he told me if I felt OK to drive to go and see him. I drove straight there taking me approx 45 minutes. When I arrived and as I had been sat for so long I felt OK and was not out of breath. It made me feel silly about turning up for an emergency appointment and had thoughts of driving away and going home. Thankfully I walked into the doctors. After walking to reception which was certainly no more than 25 metres from where I was parked, when I arranged at the counter I was that much out of breath I could not tell the lady why I had arrived. Slowly letting her have my name I was quickly shown to my GPs room. My GP took my readings (blood pressure, heart rate etc...) and all were giving odd readings. He immediately gave me oxygen and called an ambulance. When the ambulance arrived, they wheeled me out to the vehicle. I then stood up out of the wheelchair up 2 steps into the ambulance and lay on the bed. This movement bearing in mind I had been sat still whilst with the GP and on oxygen raised my heart rate to 183, the ambulance took me to A&E with lights and siren with a suspected PE. In resus they immediately gave me clexane injections as they thought the risk was far greater in waiting for actual diagnosis. Looking back, the actions by my GP, the ambulance crew and resus clearly helped save my life or certainly prevent further problems. I arrived on Tuesday and was on high alert until Thursday morning. Scans found a massive clot of both lungs and a clot in my main artery, with damage to the right hand side of my heart. I have been told the damage on my heart is naturally reversible which is great news. On the Wednesday in hospital, when my wife visited 2 doctors and a nurse took us into a private room to confirm all results and tell us the seriousness of what had happened and could happen. My wife stopped them (whilst crying) and said to them 'why do I feel you are preparing us for the worst? They responded with stating they had to discuss all possibilities and death being one. Once I responded to treatment they became much more confident and happy with the way my body was dealing with the trauma. By Thursday morning I was off high alert and by Friday afternoon I was released from hospital. I was advised that I should be very careful and expect to start feeling normal after 6 weeks but full recovery could take up to 2 years. I am now on anticoagulant medication idefinately.
Since leaving I feel progression but have days where I become very concerned due to severe headaches and becoming extremely tired. Nobody is able to tell me what I should be doing.
Can I do exercise to ascertain what can be achieved whether that is walking for an hour or actual physical exercise. I am 33 years old and need to be active. I have returned to work but everyone seems to think this is too early, I agree I get tired but surely I need to get in with things unless someone can tell me by actually doing things I am likely to cause myself more damage? Can I drink any alcohol at all? Couple of beers at Christmas or the occasional glass of wine? If I am tired, do I have to stop what I am doing and rest? Can I walk/exercise to a pint where I know I am exerting myself? All these questions I have and I am not sure who can answer them....
I have made an appointment with a haematologist in a couple of weeks and will ask him everything, but is anyone out there able to offer advice?
Apart from feeling more tired than usual, a shortness in my lungs when deep breathing and experiencing headaches I do not feel that bad. I feel very lucky that my body has responded this way.
Never used a forum like this before but as I am trying to educate myself about PE on the internet I came across this site and thought it was worth a shot....
This is a great site that I happen on when looking for information on PE online. There is such a variation in how people are affected that it leaves one saying anything is possible. I, too, am part of the 66% club, having been diagnosed with many large PE in both lungs and being told by the ER doctor that my situation was 'catastrophic'! It is weird, I have felt worse with a case of the flu. It has been almost 6 months since the diagnosis. My blood-thinner medication, Zeralto, is very tolerable with no side effects and no necessity for ongoing blood tests. Yes! As an active 63 year old, the physical limitatins in recovery are a bit frustrating but since depression and anxiety are symptoms, I am concentrating on staying positive, content and busy with less physical activites.
My conditions, likely, was a product of a genetic clotting disorder called Factor V Leiden. Since my cousins children both have it and her sister, obviously this is inherited on that side the family. With only two live births from six pregnancies, it has now been diagnosed (likely) why this happened to me 30 some years ago. The blood clots would cause,the death of the fetus...had we known, we may have been blessed with the four children we wanted. (i am just thankful for the healthy son and daughter we have). That being said, the specialist advised that all females on that side the family get checked for the condition in order to prevent miscarriages and missed abortions.
Interesting tidbits I have learned from reading this blog that others have experienced.....three persistent health issues I had previously have completely disappeared since diagnosis and treatment. #1- for maybe 10 years I would have times of extreme fatigue. I called them 'no go' days as I simply could not push myself to do anything more than just function; #2- persistant pain in left heal, no amount of exercising/stretching would get rid of it; #3-squeezing/pinching in left side, deep under breast, recurring more when tired. All these conditions had been mentioned to doctor, stress tests, ECG's done, etc....no diagnosis. I feel quite sure now why....blood clots, otherwise, why would these all disappear completely after being on meds?
To,the rest of our 66% club, hang in there. Stay positive. Do what you need to do to stay happy, calm, contented and positive you will recover. Do only as much exercise as your body tolerates. A Tylenol for discomfort certainly helps. Connect with others walking the same path as many non-participants don't understand. I'd be happy to email with anyone interested while on this recovery trail.
not quite a year ago (mid November 2016) I woke up in the middle of the night with intense pain coming from the left side of my chest severe enough that I could only take very shallow breaths, a deeper breath felt like someone was inserting an ice pick in my side. I had been cutting and splitting firewood the day before (I was 64 at the time)and thought it was a muscle strain issue so got into a very hot shower and let the water beat on it for 15 minutes and the pain started to subside. I took a couple of ibuprofen and went back to bed. Over the next few days the pain want away completely so I assumed that my self diagnosis of muscle strain must have been correct. At the time I was working 7 days a week and had been for the previous year or so, feeling a bit rundown and had an ongoing cough and occasional low grade fever which I attributed to some kind of "bug" with the change of season. A month after I had the issue with my left side, I woke up with a mild pain on my right side which I again attributed to a muscular issue from "bulling" the day before. This time a shower didn't help. By bedtime, I was in enough pain that I couldn't lie down. I tried to get some sleep in my recliner but by 3 AM I was bad and getting worse. I woke my wife and said I think I need to go to the hospital. We live in rural Maine, so it took 35 minutes to get to the emergency room. By that point, I was in so much pain that it took morphine and Demerol to make me able to lie out straight enough to get into the CT machine. Based on that scan, the diagnosis was "multiple pulmonary emboli in both lungs". It turned out that the issue I had had a month before was in fact blood clots in my left lung, not muscle pain. who knew? I was in the hospital for three days that time. I was released and my primary care doctor referred me to a pulmonologist who determined that I had pneumonia, and had had pneumonia for at least several months. Long enough that I had started bleeding into my lungs. By this point, the infection in my right plural cavity had formed a cyst of sorts, the pulmonologist described it as a ball of infection the size of an orange. After several rounds of antibiotics, with no positive results,it was determined that I required a more invasive treatment. I was referred to a thoracic surgeon with the belief that this "cyst" would have to be surgically removed. I was admitted to a second hospital, but after reviewing chest x-rays and CT scans, the thoracic surgeon said he believed that he could deal with the "cyst" with a catheter through my back. I went through that procedure and after three more days in the hospital, I was released and be came an out patent. I had the catheter in my back for two months. It was removed last St. Patrick's Day. I went through several months of depression during this time. I am a gardener, and I wasn't even looking at seed catalogs, because none of the doctors at this point could rule out cancer as a potential cause, I was scared. I had absolutely no stamina. Climbing a flight of stairs would completely wind me. Many days of questioning self-worth. Finally in late April I was able to see a hematologist/oncologist who stated definitively that I do not have cancer. It was determined that the cause was the pneumonia which I apparently had had for 3-4 months. I pride myself on my work ethic, and I couldn't work. Five months in, April, I just couldn't sit in my chair any more. My wife (have I mentioned that I am married to the most wonderful, patient woman in the world?)reminded me that I had been wanting to rent a piece of heavy equipment and do some clearing on a piece of land we own. She said that she knew that it would be a little strenuous getting to and from the machine, but that once I was in the operators seat it would be joy stick controls. I rented a small excavator for two months and went to work on May 1. Initially it was exhausting, the walk into the woods where I was working was 1/4 mile. But by the end of June when I returned the excavator, I was markedly improved. Since then, I am steadily improving. I work 4-6 hours a day now rather than the 8-10 I was doing before I got sick. I have learned to look at my day to day condition retrospectively rather than daily. I still have days when I feel very tired and have some discomfort in my side, but if I think back to how I felt a month or two ago, I can see the overall improvement. I am getting better all of the time. How much longer will I continue to improve? Who knows? I am 65 years old now and I am told that I lost about 20% of my right lung through all of this. I guess where I am going with this is to say, if you are in the healing phase of this illness, first of all count yourself lucky to be on this side of the grass. I know I am. Secondly, don't wait for the healing to happen. Get up out of the chair. Get moving. Start slowly, but move. Walk, do for yourself. Rest when you feel that you need to, move when you feel that you can. Third, this healing is not a straight line continuum, there is an ebb and flow to it. Don't get frustrated if every day you can't see a steady improvement, think back to where you were a month ago. Are your good days now better than your good days a month ago? Good, you are healing.