I need your support

Chest and lungs
1

I am a 44 years old female. I had my first pneumothorax episode (right side) summer 2014 when they inserted a chest tube and told me it is either idiopathic or due to sport , just forget about it and go on with your life. 

I had neuropathic pain and lots of fear and anxiety. How can i go on with my life when the pain constantly reminds me of this traumatic problem?

6 month after , I had a common cold and upon examination, they also find out that I have a relapse same side; the right one.

I was hospitalized for a week, oxygen supplementation and all went well. Upon   discharge the doctor told me : do not go to the mountain, try not to laugh, not to cough, not to catch a cold, not to travel. This was impossible. I went to see another one and he recommended pleurodesis.

I went into surgery , had a chest tube again, 3 weeks at home rest than went back to work again despite the pain. The surgeon  told me I had to see a gynecologist, he suspects endometriosis. The gynocelogist told me he was wrong but gave me Decapeptyl to induce medical menopause for six month. You can imagine , the pain, anxiety, hot flashes... I was in hell , always afraid. My life has changed. I travelled because I was working on PhD , I tried to fight my fears and all the time doctors were telling me that I need a psychiatrist advice that my pain was only an illusion and that I have to live a normal life. During the surgery they found lesions in the diaphragm and they stapled it. I kept complaining from the same pain like an inflated balloon in the diaphragm area. I continued work, I travelled, tried to be happy but when I go to sleep or wake up I always felt miserable. I also had this sound when I was anxious like weasing. it made things worth. 

After a year, I was Travelling for a congress, I was not feeling good especially every time I have my period. I felt  pain in my back and this horrible tingling in the right lung area. I told myself , this is nothing and took the plane because I wanted to believe the doctors. It turned out I had pneumothorax again and I took the plane not knowing. I had another surgery, this time Thoracotomy plus decortication and another Decapepptyl , I went through the same hell but this time had after 40 days another surgery laparoscopy where they found out I had asymptomatic endometriosis stage 4 in my abdomen, diaphragm area and peritoneum. They took off my ovaries .

Despite that the diaphragm biopsy did not show that it was endometriosis. After I got my ovaries removed , the doctor told me I have to watch out what I eat. Be carefull of phytoestrogen. Do you know that almost all food contains phytoestrogen. I searched and searched and now I know what and how to eat but I found that all processed food , chocolate and candies contains soya. Why is Soya added everywhere in our food? I also tried to loose weight and it happened. It has been 3.5 month after my surgery. I don't have the same fear but I have moments of doubt. I am afraid. Is it going to happen again, Am I really cured? Is it really a rare problem due to endometriosis? Is my pain  and numbness ever going to go away? Is it just due to the surgery or there is something happening? this is a nightmare

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I understand how you feel katia53781.

Ive been scared and worried about how pneumothorax go. I think what helped me alot was my faith with Lord Jesus. I prayed everytime i got scared and worried. It really helps alot.

Im currently recovering but has the faith it will never be coming back again. You shall be healed and claim it. God be with u.

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Thank you,appreciated .

You are right , my faith in God helped me. My prayers were my salvation this is why I worte moments of doubt.

But you know these moments are true torture since this horrible problem cannot be really known: if pain is just due to surgery or to a collapse. Each time I had an episode, my SPO2 was 96% and my pain was the same as after the surgery . There is no way to find out unless I get to the emergency room and get an x-ray: this is the frustration.

I had multiple relapse and after VATS, i had a relapse again and had a thoracotomy; so, despite my prayers and my faith that the Virgin Mary is my confort, I have fears.

Fear of flying 

Fear of the pain because it comes and goes and I don't know what it is

Fear of relapse

Fear of sports that I love (NoW I only walk for 45-50mn a day, 5 times a week-I used to be atheltic)

Fear of eating something that contains phytoestrogen and exacerbate my endometriosis

Lack of sleep since I have hot flashes and night sweats

I want to go to see my nephew in ths states like I used to But now I don''t dare to travel oversees.

Despite that , it is true, faith gives us strength but if I look at my life now, nothing can be spontaneous, every pleasure (even a normal intimimate life, I fear to have it ) is gone.

Is it temporary? Or we get use to it.

Thank you for the wishes. I really need it and I knwo that God is with me and all of us otherwise, I would be at home depressed , crying over my faith and asking for others to sympathize with me.

I just need a support, someone who have experienced all this .

For you ladies, pay attention, sometimes like myself it may be linked to asymtpomatic endometriosis only diagnosed by laparoscopy.

It took me two years to know after they kept telling me it is idiopathic

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Sorry forgot to tell you, I wish a fast healing and a wonderful life. Thank you

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Thank you katia53781. Keep the faith alive.

Nothing is impossible with him. As to my case, my doctor diddn't limit any of my daily activities. I had gone back to intimacy night after i got discharged from the hospital, helpd me relieved the pain.

But 1 week had past, i felt some discomfort which made me decide to take a rest from work again until i go fine.

Doctor told me after having pleurodesis, chances of having relapse is less.

So i could go back to my normal life as well. Im definitely having some exercise after recovering because i dont do any of it.

And after reading some thread. Most of us are guilty of staying up late and not drinking right amount of water. Change in lifestyle is what im going to do to avoid relapse.

Im pretty sure you'll be fine with that faith in you as well. I also believe in the intercession of mama mary. I hope you well, God bless.

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And btw, you'll conquer your fears.

Now that i have red more threads in here. I gain alot of confidence.

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Hi Katia, I am very sorry to hear about your pain. I had pneomothorax VATS (Video Assisted Thoracic Surgery) end of February. My surgeon, family and doctors recomend that I live my life despite having pain. I know they want what is best for me but I never found evidence of "moving on with my life and being active" is a good treatment for a collapsed lung. In many patient stories I read online, they have a reoccurance of pneomothorax because they think they should "get on with their life". However, once they start living their life and "fight the pain" they usually get another collopsed lung. 

I will be completely honest with you. I have not left my house since February unless to go to a doctor appointment. I remove myself from all distractions such as friends, obligations and registered for financial assistance from the government because I felt shortness of breath and chest pain. Because I made this sacrifice of resting, not leaving to go outside even for short walks, I have gained weight from lack of exercise. However, may pain is very low and almost gone. It has been 5 months.

I notice that no matter how much or little active I am, from 4 am to 5:30 am I have a "pain cycle" where I have a slight shortness of breath and some chest pain. To treat myself, I take deep breaths at this time period. I will then go for a 1 min. slow walk in doors. Going outside might make it worse.

Speaking to your condition of collapse lung, I realize I need my body to heal before doing anything. You need to measure your healing in two measurable goals:

1. Wait until pneomothorax is gone (for me around 3.5 months without leaving my house unless to go to a doctor appointment. I went for a 5 min. walk only 1-2 during those 3.5 months)

2. Wait until your lung is healed. This second step is very important. If you start becoming active and living your life as if your pain is gone, this may hurt you again because you haven't fully healed yet. 

Please make the sacrifice and heal before you do anything. I stayed indoors since February and I was able to accomplish this by not having any friends, not working, not schooling, not doing any other thing except on my computer. I isolated myself for the sake of my health and now I have very little chest pain and almost no shortness of breath. At this rate of healing, I should be more stronger in another 3 months but maybe not fully healed yet.

Doctor will tell you to live your life and so will family, friends, etc. I think you should analyze stories from many cases of pneomothorax. You wil see that people had another collapse because they refuse to sit and do nothing for 6 months or 1 year. It is a long time, you will gain weight from eating but what this means is instead of exercising, rely on a high protien diet. After 6 months or 1 year, I would do light walking 1 hour a day and lift light weights until failure 2x per week if I felt my body was ready. 

This is what I did and it has been working for me. I discovered it by accident because of my fears of having another lung collapse. I hope you get better and remember, stay indoors and do not be active in any way. If you experience pain on your lung or shortness of breath, rememeber to take deep steady breaths until the pain is gone. This may take minutes, or even an hour. Make sure you sleep alot and don't move around too much because moving around has caused me shortness of breath and chest pain for the most part.

Take care

Brody

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Thank you for taking the time to write to me.

I do believe that we need to give our body time to heal . You are 100% right and we need to slow down and listen to our body try to start slow and this what I am doing but for me, I need to open up to life, family , friends , work, life fresh air...Sharing , laughing is part of healing too in addition to healthy lifestyle avoding stress and of course drinking water and eating healthy.

Thank you for the tips added, I changed my lifestyle too by not working that hard and not stressing over silly things. Pain is a very spiritual experience that teaches you what is important in life and how to set your priorities straight.

Wish You all the best and a 100% RECOVERY

 

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My pleasure Katia. Wish you the best too