I am a little embarrassed to talk about this but I am learning that it is better to talk about whats going on rather then keep things inside, that has been the crux of my problems for years. I have had cystic fibrosis since I was born. I was diagnosed with cystic fibrosis related diabetes when I was 13. I really started going down hill when I was 18. I was on oxygen 24/7 by the age of 22. I was put on the transplant list in November of 2009. My lung collapsed in July of 2010. I was in the ICU for over 2 1/2 months. Of that time I was on life support and eckmo for 19 days. I was literally days away from dying when I was saved by a double lung transplant on September 3, 2010. I was in the hospital for additional 3 weeks recovering and I left the hospital in late September 2010. As you can imagine I saw and experienced a lot of scary and difficult situations and procedures when I was in the hospital particularly the ICU including being awake and remembering when my lung collapsed, being awake when they inserted numerous chest tubes, countless CT's and biopsies, waking up with a trachea and on eckmo, and probably the worst of all, watching first hand as a friend of mine who also needed a double lung transplant code in the room next to me and seeing the doctors have to revive her (fortunately she made it through and is doing great now) For the first 1 1/2 years after the transplant I was doing really well. I had some pretty significant complications but like any cyster it just became normal to deal with more medical issues. However about 8 or 9 months ago I started experiencing some anxiety, depression and cognitive problems (memory loss, lack of attention, lack of focus, in ability to retain information, all of which is really really not good to have when your a college student) I didn't think much of it, I just thought the symptoms would pass, unfortunately they have not and they have only gotten worse, so much so that at times I am afraid to leave the house. Then about 4 months ago I started having nightmares, about the transplant, about the procedures, about the ICU, about my donor. At first it was maybe once or twice a week but over time they have gotten worse to about 3 to 4 times a week. I'll have a really bad nightmare and I will literally start screaming in my sleep. On more than a several occasions my boyfriend has had to wake me up in the middle of the night and calm me down because I am getting so upset in my sleep. Because of this I am getting (if I'm lucky) between 1 and 3 hours of sleep a night. As you can imagine it is really really affecting my day to day life. I am missing doctors appointments, not doing my school work, not going to class, I've become extremely irritable and sometimes even missing medication and treatments, all because I am so tired and can't sleep and fall asleep at random random times. I have spoken to several doctors including one of my transplant doctors, 2 psychiatrists, a psychologist and a psychology professor and they have all said that I have PTSD (post traumatic stress disorder) from the transplant experience, my time spent in the ICU and having such a close near death experience. They all said subconscious memories of what went through are coming to the surface now that I am dong better and my mind has more time to process things. I have started going to a support group for people who have experienced trauma and I am starting this treatment called EMDR (Eye Movement Desensitization and Reprossesing) which is supposed to help my brain adjust to what I have been through and make the past experiences less scary. I am wondering if anyone else is experiencing what I am when it comes to depression and anxiety and nightmares. Even if you haven't had a transplant and have just gone to the hospital a lot. I just want to know that I'm not alone and if anyone has some advice about what I could do to help the situation. Please private message me or let me know. Thanks so much, sending lots and lots of love to all!!
PTSD and CF, info needed, please help
- Thread starter baco623
- Start date
Simba15
Member
Hang in there
Sorry to hear you are having a tough time. This is very common for people who experience any type of trauma and almost dying IS trauma. Keep attending the group adnd ask for individual therapy from a clinican who is experienced with PTSD. EMDR has helped many people with PTSD, including war survivors. Hang in there. It WILL get better.
Sorry to hear you are having a tough time. This is very common for people who experience any type of trauma and almost dying IS trauma. Keep attending the group adnd ask for individual therapy from a clinican who is experienced with PTSD. EMDR has helped many people with PTSD, including war survivors. Hang in there. It WILL get better.
azdesertrat
New member
Wow, that's rough.
You know, your situation & mine are almost identical. I was put in a medically-induced coma for 3 weeks after my left lung blew a big hole in itself.
I was listed at the time. Everybody thought I would be de-listed because I was so sick.
The rules of allocation were changed because of my situation. Now, instead of time spent on the list putting you at the top, need puts you at the top.
Fortunately, my coping mechanism must be much different than yours. While I have suffered depression post-transplant, I have NEVER had symptoms nearly as bad as what you've suffered.
I can certainly understand why you would have PTSD after what you went through. I can really sympathize because I went through the same thing(s).
I hope & pray you will get the help you need so you can start living again.
Take care, 'Pat'.
You know, your situation & mine are almost identical. I was put in a medically-induced coma for 3 weeks after my left lung blew a big hole in itself.
I was listed at the time. Everybody thought I would be de-listed because I was so sick.
The rules of allocation were changed because of my situation. Now, instead of time spent on the list putting you at the top, need puts you at the top.
Fortunately, my coping mechanism must be much different than yours. While I have suffered depression post-transplant, I have NEVER had symptoms nearly as bad as what you've suffered.
I can certainly understand why you would have PTSD after what you went through. I can really sympathize because I went through the same thing(s).
I hope & pray you will get the help you need so you can start living again.
Take care, 'Pat'.
LittleLab4CF
Super Moderator
I agree that most likely you are erupting with repressed emotions from multiple traumas or suffering PTSD. The close cousin of PTSD from physical trauma is war induced PTSD and they are very close indeed. I spent two years bringing my older brother out of a moldy jungle he had crawled into for a year. In the jungle both life and death were in the instant, and horror begat horror, he had developed a great sense of survival that didn't fit in back home. This experience was a voyage into our primitive brain and how it usurps our higher functions.
We like to think our intellect lords over everything that is our mind. When the primitive brain goes into true fight or flight mode everybody watch out. About this time last year I experienced the anxiety of (nearly) dying. Again it was nothing as protracted and genuinely life theatening as your several traumas. Heck, I was 62, loved every minute of my life and have been around long enough to handle death, as in mine. NOT!!! Having my first anxiety attack was terrifying itself not to mention I wasn't seeing anybody taking my percieved demise seriously in the ER. There was a good reason for my panic but I wasn't dying. That didn't change my experience and the helplessness I felt being treated. I am not the helpless type nor are you. You have a wonderful attitude toward your CF and life. The list of events are at once something and nothing up to a point. In this patch of grass we can talk about blowing a hole in a lung or a DL transplant and school grades in the same sentence. In reality people have been mourning the loss of tonus for ever. You have been through more than the strongest person could stand and your losing concentration?
Take the time, accept the help of others and be still. Just be still.
LL
We like to think our intellect lords over everything that is our mind. When the primitive brain goes into true fight or flight mode everybody watch out. About this time last year I experienced the anxiety of (nearly) dying. Again it was nothing as protracted and genuinely life theatening as your several traumas. Heck, I was 62, loved every minute of my life and have been around long enough to handle death, as in mine. NOT!!! Having my first anxiety attack was terrifying itself not to mention I wasn't seeing anybody taking my percieved demise seriously in the ER. There was a good reason for my panic but I wasn't dying. That didn't change my experience and the helplessness I felt being treated. I am not the helpless type nor are you. You have a wonderful attitude toward your CF and life. The list of events are at once something and nothing up to a point. In this patch of grass we can talk about blowing a hole in a lung or a DL transplant and school grades in the same sentence. In reality people have been mourning the loss of tonus for ever. You have been through more than the strongest person could stand and your losing concentration?
Take the time, accept the help of others and be still. Just be still.
LL
M
MattJ
Guest
Congratulations for speaking out and talking about yourself. That is a huge step in getting better. I am a CFer age 40 and also a Marriage Family Therapist Intern. I use EMDR in my practice and it can work great for medical trauma's in relieving your PTSD symptoms. You are making the right choices and sounds like you have a good support team. EMDR is part of a trusting therapeutic relationship. It is important that you feel connected to your treatment provider before starting the EMDR processing. If you don't feel connected keep trying a new therapist until you do. All therapists are different, just like teachers at school. They are all teachers but you connect and learn better from some than others. Hang in there, the treatment really works.
Matt J.
Matt J.