Post pulmonary embolism problems

Posted by agbrogers @agbrogers, Mar 6, 2019

Hello! Three years ago, I had a massive saddle embolism and massive bilateral pulmonary embolism, infarcts, and seconday pneumonia after the PE episode. I also had three stranded clots in the heart. My heart was compromised, enlarged, and signs of pulmonary hypertension. I was treated with thrombolytics, and even after treatment, it took several weeks until clots began to clear. It took several months for the ct to show no evidence of new clots. I was told that I should not have survived and it was the worst case seen by several doctors of someone who survived. SInce my episode, I have remained on Xerlto as I am less active and am at high risk of another episode. I have not been tested for a clotting disorder, and no one in my family has been diagnosed. My episode was triggered by an extensive neck surgery. My question is if anyone has had such a clotting episode and if so, what has it been like afterwards? Ever since my PEs, I have had a horrible "smoker's cough", but I have never smoked in my life. It is non-productive and it is present on a daily basis. My voice is a bit raspy, especially when I laugh. At times I can't move air, and in October was hospitalized for 12 days. I got very hoarse and could not get sound out. I have had it happen ever since my clots, but it usually only last anywhere from a few hours to a couple of days. In October, it didn't improve after several days, and when I called the doctor's office, I was told to go to the ER. I had to do breathing treatments every 4 hours. I initially did 3 breathing treatments in a row in the ER and there was no change in airflow, so I was admitted. After 10 days of extensive treatments, I finally moved air much better. My breathing function test showed that I had small airway disease or small vessel disease. After discharge, I did a bronchial challenge test, which was negative for asthma. My pulmonologist has not been able to pinpoint what I have. There are times that my oxygen level drops, but most of the time I stay within normal limits. Today I had a 6 minute walk test, and I didn't go below 95. My doctors seem puzzled. I have also been diagnosed with HFPEF (heart failure with preserved ejection fraction). I developed this after the clots, but my doctor does not believe it is related. Has anyone developed heart failure after having a saddle embolism, PE, or clots in heart? We are trying to figure out what may be causing all of my medical issues that all started afer my surgery. Hopefully I can find someone who has had the same experience to help me understand better what is happening to me. Thank you for your time. Any suggestions of where I can get the best help or what would be best to do will be greatly appreciated.

Hi @agbrogers thank you for sharing your story. That must be so difficult to go through all of this and still be searching for answers.

I wanted to introduce you to @mark_fugate who has experience with a pulmonary embolism and @windwalker has experience with small airway disease and may be able to offer you support.

Back to you @agbrogers how have you been feeling since those treatments in October? Has your smoker's cough continued to be prevalent?

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@ethanmcconkey

Hi @agbrogers thank you for sharing your story. That must be so difficult to go through all of this and still be searching for answers.

I wanted to introduce you to @mark_fugate who has experience with a pulmonary embolism and @windwalker has experience with small airway disease and may be able to offer you support.

Back to you @agbrogers how have you been feeling since those treatments in October? Has your smoker's cough continued to be prevalent?

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@ethanmcconkey thank you for the names. I'll message them and hopefully they can provide some insight. I haven't been able to connect with anyone who has had an experience like mine. I've met people with a PE, but not with a saddle or with multiple PEs and heart embolism. I don't know if my recovery is normal or not. I know everyone is different.

After my hospital treatments, it took me a while to get my strength back. I was able to get more airflow, but I still have that awful sounding cough. Even yesterday my pulmonologist heard it but doesn't quite know what's causing it. He said three things that usually cause a cough–reflux, post nasal drip, and and a cold. I have neither. I've been tested for reflux but I don't have it. He also thinks that maybe I had a viral infection back in October, but there were no indications at the time. I didn't have any symptoms of being sick. I felt normal, but I just couldn't get air to move. I didn't have fever and my blood counts were all normal. I've had some days since then that I get a bit raspy/hoarse and difficult getting air to move, but it goes away as it always had. October episode was the longest I had it like that. My cardiac therapist believes it may be nerve related, as I had a 3 level fusion of C4-7, and still had two other that needed repair. I don't know if this is all par for the course after the blood clots or if there is something going on. My fear is that as I age, I will only become worse.

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@agbrogers, you are probably farther along the recovery path than I am. I know first hand how tough it can be to find someone to relate with regarding PEs of the serious kind. None of us survives leaving those few survivors to figure it out alone.

I am coming up on the first anniversary of my PE and I have been fortunate to have a very good cluster of supportive friends and health care professionals.

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@mark_fugate thanks for the reply. I'm glad that you have supportive friends and health care professionals. It is such an imperative aspect of recovery. I had the support in the beginning, and still have a few people left, but as time passed by, people move on. I have pretty much isolated myself from many. I don't like to go out in public much anymore. My legs are in constant pain and it's difficult to walk. I still use a walker to get around, which makes it difficult to do much. At first I was so thankful to be alive, but as time went on and my recovery wasn't as easy, the emotional and psychological part got diffult to handle. I think one of my struggles is I have no one who can relate to what I've been through. There are people that have had a PE, were in the hospital a few days, and then stayed on blood thinners for 6 months and pretty much recovered with very few limitations. Even my doctors have had difficulty figuring out all the issues I am having. My pulomonologist told me the other day he would present my case to his rounding team (the hospital is teaching school) to see if anyone had any ideas. He was going to call me back the ext day, but I haven't heard back from him. Last year I was hospitalized for a week there. Cardiology, pulmonology, and medicine department were all involved in my care. The cardiologist was sure I had another clot in the heart that wasn't discovered. Previously they had found heart failure, but during the echo, it didn't show that I had heart failure anymore. He was completely baffled. I'm back to having heart failure, so they can't explain why ty keep getting conflicting test results. After a week in the hospital, the doctors said that they couldn't figure out exactly what I had. I live with no answers and find my doctors have giving up on me. I am alive and should be happy with that fact. It is difficult dealing with it and not understanding or having someone to compare things with.

I wish you luck in your recovery. Are there any medical issuers that you now have that you didn't have before? Do you still have any coughs, shortness of breath or developed heart issues? How about blood pressure or heart rate issues? I hope you don't mind answering. Thabks again for sharing!

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@agbrogers It sounds like you are having a tougher time than I am.

Yes I did, and still do experience issues which were nonexistent prior to my illness. Most have been psychological. I started having panic attacks which were coming out of the 'blue', emotional swings, insomnia, and cognitive issues.

I just last week finished with my pulmanologist and he told me that I have a strong heart.

The best therapy that I get is from my Grand Kids. I pack up the car and go hang with my grand kids when I start feeling bummed out. The drive is six hours and I stop every hourish for a walk. There's nothing more enjoyable than watching and itellectually discussing 1950's era B rated SciFi or horror flicks with six year olds. Further, it gives my wife a break from me. Care givers I believe have a tougher time than anyone can realize.

Do you have Grands or know of some that you can borrow?

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I understand abou tthe psychological issues. I have panic attacks and often have mood swings. Insomia has been a major problem, along with horrible nightmares of not being able to breathe. I have PTSD from not being able to breathe, along from the initail attack by a student that started me on this path of needing surgery. I often have nightmares of trying to get air and not being able. Sometimes I could be doing something and suddenly I have a trigger and can't shake off that image of gasping for air and being terrified to close my eyes because I was afraid they would never open again. After going to the ER, I was admitted and given morphin and other meds. I could not relax. I was in sheer panic mode and despite all the medication, I fought to stay awake. It has been something that even after 3 years I can't seem to forget.

I don't have grandchildren. I have two kids in college–one out of state and another 2 hours away. I also have a 14 year-old freshmen in high school. I was always very involved in my children's sports and school activities, but I tend to stay away from being part of my son's activities. Either pain causes me to stay home or my fear to be around people or feeling of isolation. I am getting psychological help, but it has been a long process, as I continue to have triggers and it seems like it's a constant new health issue arising just when I think things are beginning to settle down.

I am glad that you are able to get away and enjoy being a grandfather. How great to have that time to share and make memories with them! I continue to try to move forward and pray that one day we can figure out how to resolve my medical issues. I know that some issues may never be fixed, but hopefully they will figure out what exactly is wrong and have a treatment plan to help.

Thanks so much for your responses. Take care and continue your recovery with a wonderful attitude!

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Are you taking anything and seeing anyone about the psych issues? I take Lexapro for the panic attacks and Lunesta for sleep.

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@mark_fugate , I have seen a PTSD and anxiety psychologist and am seeing another one for the depression. I also have a psychiatrist who handles my medications. I take Wellbutrin and cymbalta, which is prescribed for anxiety, depression, and pain relief. I take trazadone for sleep, but it hasn't helped with the nightmares. It does help me sleep more than if I don't take it, but it's not restful sleep that lasts all night. I'm constantly awake by pain and anytime I have to move, I wake up bc it hurts to move after being still for a while. I don't take any narcotics for pain bc of fear of negative consequences and the benefits don't outweigh the risk to my breathing and heart health. I'm just stuck with very little that can be done to help. My doctor wanted to do a spine stimulator, but the pain management doctor said it's too risky for me due to the clotting that I had. I feel like I just go in circles.

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Maybe ask about Lunesta for sleep? I have good full sleep with a 3mg dose and feel well waking up. No hangover or grogginess.

I take 10mg Lexapro for panic attacks. The Lexapro stopped the panic attacks dead in their tracks.

One thing that I am doing which may be different is that I used the specialists to assist with diagnosis and setting up initial therapies then turning everything over to my primary care physician (PCP). My reasoning, along with those of the therapists is that my PCP knows me better than anyone other than my wife and between us we feel like we are progressing towards recovery.

Note that I said "we". My beliefs are that wen I got sick, the entire family became ill and it takes everyone's efforts to get well.

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@mark_fugate– Good morning. Wiser words have not been spoken, yes, it's the whole family and sometimes more to heal. I do the same thing that you do, eventually turning things over to my PCP.

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I left my PCP several months after my clots. He was the doctor who oversaw me at the hospital when I was sent for acute care rehab after my surgery. During the two weeks I had symptoms and complaints that something was wrong. The day before I was discharged, my leg was very swollen. I had been asking for pain medicine for my leg for a few days prior. I was told the day before discharge that they would do a Doppler the following day, but instead, I was discharged and told that it wasn't red or hot. After the clots, I was just so thankful for being alive that things didn't hit me. It was through the weeks later, seeing 14 other doctors while hospitalized, telling me that my symptoms were those if dvts and PEs. You continued seeing him for a while, and finally couldn't do it anymore. I no longer trusted him. I had to stay with him for as long as I did bc workers Comp doesn't let you change a doctor once you pick one. So, I haven't found one again. My cardiologist, pulmonologist, hematologist, and psychiatrist have all taken part of my care. I feel it is so broken bc they don't work as a team. I know it would be much better to have a PCP to take care of everything, but I haven't found anyone yet. I think I'm afraid to have to start new. I avoid going to the doctor bc it's so disappointing when you don't get answers or get conflicting diagnosis. I'm just overwhelmed with the entire thing. I will begin to focus on finding a good PCP. And yes, it is a "we" bc the entire family goes through everything with me. They may not feel my pain, but they see what it does and it hurts them.

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That sounds like you need to get things under your control. My PCP and the specialists I saw all worked 'hand in glove'. Maybe that's why I am getting better?

I would seriously consider finding a PCP and let the PCP coordinate the specialists. Further, take your wife with you because she is going to need as much information as you, and she will have her unique observations to share.

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