I Survived PE at Age Seventy Something – Joan Allen’s Story

Categories: Patient Stories

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This photo was taken before I went to the EJoan Allen Patient StoryR, but I was already having shortness of breath upon exertion. That was my only symptom. I saw so many doctors and had three CT scans without dye and nothing was found on my lungs.

One week in March 2015, my breathing got worse and one Sunday morning I was so weak that when I tried to roll over in bed, I fell onto the floor. I told my husband: Get me to the closest ER. We live in a retirement village in San Antonio. We have been here four years. It was 6:00 a.m. and I knew at this ER, being the second busiest in the city, that I would have to wait a long time to be seen, but that was not so.  I was in a walker/wheel chair that someone had loaned to us. I was hanging over the side because I had no strength to sit up. The nurses ran to take me to the exam room and everyone was busy around me.

The doctor came in, asked a few questions and said, “I think you have a clot in your lung.”  I said, “I’ve been tested for that, but they never found anything.” Luckily, he did not listen to me, and I had another CT scan with a newer, more powerful dye and the clot was found immediately.

I was in the hospital one week and came home with warfarin, oxygen 24/7, and a wheelchair. I was mentally and physically unable to care for myself. The hospital fell down on the job. I should have been sent to rehab, but it was the weekend and the doctor sent me home.

So, this is what I want to tell everyone, no matter what your age may be:

  1. Go to the ER if you have shortness of breath. I did not. I tried to tough it out at home. The ER has all the equipment that your family doctor doesn’t have.
  2. As far as going to rehab, once you are at home, you cannot go to rehab, according to Medicare. You must go from the hospital right into rehab.
  3. I got home healthcare and a licensed practical nurse or LPN came once a week to check my INR. A registered nurse or RN came once a month to check on me. Physical therapy came twice a week to get me started walking again. It was a long and tough road, and home healthcare is fine, if you have a great caretaker and that is what my husband did for me. I could not shower or dress myself or make any food. He did it all. So, you will need someone 24/7 if you are as bad off as I was.
  4. Mentally it’s a shock to your brain and to your system to be so sick. I had anxiety attacks, especially when I awoke in the mornings. A common anti-anxiety medication worked for me. Also, I had printed out 100 comments from another blog about blood clots and I would read and re-read them when I was feeling down.
  5. I stayed in the house for six months. It wasn’t as bad as it sounds. I was too ill to even care about what I was missing in the real world. The weakness was the worst, and my iPad became my best friend.
  6. After six months of warfarin, my clot is gone but I am still in recovery to regain stamina. To build up strength, I go to the pool three times a week and swim. Walking is the best exercise, but with a bad hip and foot, it isn’t easy for me. I am now able to walk to the pool and back home without oxygen.
  7. No known reason was given to me for the blood clot. I do not have an inherited gene, so where it came from is a puzzle. I am worried I will have another one. The only thing I do now to avoid one is to take an aspirin each day. The hematologist also told me to buy an oximeter and check my oxygen levels every day, which I do. If it is 88 or below for a few days, I am to go to the ER because it might be another clot.
  8. There are side effects with warfarin for some people. For me, my hair broke off and thinned out, my skin sloughed off, and I had nausea and diarrhea, but it did the job as an anticoagulant.

If someone reads this and it helps them, I will be glad. If it weren’t for a very patient husband and his care, I would have been in the nursing home for all those months. I don’t know how people handle this disease when you have jobs and families and need to make a living. One doctor told me this when I was younger, “FIRST you get healthy, and then you worry about your job.” Easier said than done. I survived, but it was a long hard process and I had a lot of help as this year went by.

 

To learn more about blood clot signs and symptoms, click here.

Author: SW

7 Responses to "I Survived PE at Age Seventy Something – Joan Allen’s Story"

  1. Tamara
    Tamara Posted on December 17, 2015 at 8:53 pm

    Recovery was so painful for me. I couldn’t not even walk and I felt like I was gasping for air all the time. I do a little therapy on my right leg where the clot was behind my knee. I wear compression socks and they seem to help.

    I am glad you are doing better.

  2. Henry Bussey, Pharm.D.
    Henry Bussey, Pharm.D. Posted on December 18, 2015 at 10:15 pm

    We are in the same city, let us know if you have any questions and check out our website.

  3. Micheal pfarr
    Micheal pfarr Posted on December 20, 2015 at 12:47 am

    I suffered a provoked UEDVT to my left arm at my
    work place.Its been a nightmare ever since then.
    My workmanscomp denied me that it was work related.I been stressed out,deppressed, anxiety,and
    the fear of having a PE.I did not know nothing about
    DVT’ s until I talked to regular Doctors about it.I made a big mistake when I first got injured at work.
    When my work sent me to the Hospital,the Doctor
    told me that I had a DVT to my arm.I told him how it happened at work. I work at a Beef plant,on the
    kill floor.I was wearing a tight arm sleeve on my
    left arm.Its a protective sleeve that keeps you from
    knives from cutting you.When I was wearing it I
    felt my left arm tingling at first.I thought nothing of
    it at the time.Then after six hours of working with it
    on.My left arm felt like it was swelling up on me.I
    took the arm sleeve off and noticed that my veins,
    Was extended out.Like I just got done working out at the gym.And also my arm was bigger than my
    right arm.The Doctor wanted to put me in the hospital,to break up the blood clots. I told him that
    I had weekly bills to pay and could not offord to
    miss any days,from work.He told me that he could
    put me on blood thinners and send me home.This is
    where I made a bad decision in not taking the Doctors advise in been put in the Hospital,while
    the blood clot is still fresh.I did not know that until I
    saw a vascular surgen,eight months later.When he
    told me that theres nothing he can do know.Because,I waited too long for the blood clot
    to harden. I wish I could go back in time when it
    first happened and do it right.Now I have to live with my veins looking ugly,and abnormal.I asked the specialist could I live a normal life,like this.And
    do I have to worry about having a PE.He told me that I can live a normal life,and if I was going to have a PE it would have done it in the first early
    stages.Do anybody out there have a similar case like
    mine,and what can you ell me?

  4. Lyn
    Lyn Posted on December 20, 2015 at 6:23 am

    Hi! I had a PE at 59. I’d had surgery 3 mths prior and was having pains in the surgical area, which was from having my gallbladder removed on the right side under my breast. So my Doctor sent me off for a CT. While driving home my mobile phone rang, it was my Dr saying I needed to get to an ER, ASAP. I had a PE in the bottom lobe of my left lung. I had no idea. Even walking into the ED, complete exhausted, it was my surgical site on the right side of my body which was killing me with pain. I’d had no pain in my lung. The discovery of my PE was classified as an incidental finding. I was in hospital a week then I was sent home on a regime of Wafrin for 6 mths. I had been extremely lucky to have had a Doctor who was willing to explore the reason for my problem after two Specialists had said it there was nothing wrong with me.

  5. Ray
    Ray Posted on December 24, 2015 at 1:12 pm

    I live in Florida and we come to our cabin in NC twice a year. While in Florida around the second week of December we decided to come to the Mountains for Christmas. I was having some breathing problems, and started to get a bothersome cough. Soci decided to go to my GP before we left. He prescribed a chest X-ray, pulmonary test and a sleep apnea test. Well everything was normal. My shotneds of breath got worse, the cough got to the point I could not talk to anyone for any length of time. Visiting with a friend, he saw my dilemma and called his daughter who is in the Medical field and she kept saying I had walking pneumonia! Anyway, on Monday morning he suggested I had better get to the emergency room. I reluctantly went. When I got there and told them I was having trouble breathing I was seen immediately. Test were done and it was discovered I had two clots in my right lung. Treatment was immediately started xaraltra. Then they did an ultra sound of my right leg and found two more bolld clots. I consider myself one lucky guy. At 77 years of age, this could have been fatal. My suggestion is, if yu have trouble breathing, aggravating cough – get to the emergency room. Clots are really treatable and maybe my life style has changed a little, but I am able to cope with it. God Bless and Merry Christmas.

  6. Mandy
    Mandy Posted on January 14, 2016 at 6:21 pm

    My husband passed from a pulmonary embolism, last Aug 2015 aged 45 , absolutely devastated , we found out through post mortem he had been breathless ,sweating profusely and fainted the morning he passed

  7. Joyce Sandberg
    Joyce Sandberg Posted on July 11, 2016 at 2:24 pm

    Joan,
    Thank you for your story. I too am 74 and have recently been diagnosed with bi-lateral clots in my lungs. It was a scary situation not able to breathe. Mine were unprovoked and I am undergoing various tests to rule out malignancies, etc.
    I have a primary physician who is determined to find out the cause. My pulmonary Dr. has ordered a second Echo, and CT scan. My first diagnosis happened in the beginning of June in the hospital.
    Still on oxygen and cannot walk more than 2 minutes without it.
    I’m hoping things improve soon. I am on zestril for high blood pressure, eliquis for blood thinners and lipitor to keejp arteries open.
    Thanks again