Feeling a bit lost after Pneumonia & empyema & thoracotomy and effusion

[Addouk]

Hey, I am so happy to have found this site as I think it’s just what I have been looking for.
I really hope it is ok to post this on here, if not then apologies.
I am going through this right now. 7 weeks ago i suddenly became unwell. Well more unwell than usual, I have asthma, diabetes, chronic pain, spinal issues, nerve damage and arthritis).
I had a fever and the worst stabbing pain every time I took a breath in. It was stabbing through my chest and into my shoulder.
I saw my GP on the Friday and he gave me a course of antibiotics, by Monday it had gotten so bad that an ambulance was called and I was admitted into hospital.
I was told that here in the uk they look for inflammatory markers in a blood test. These range between 1-150, with 150 being the worst pneumonia can get...mine was 148.
I was immediately put onto oxygen, a fluid drip because I was also dehydrated From not being able to eat or drink, and I.V. Antibiotics.
I had numerous tests and it was discovered that there was some fluid around my left lung.
By the the Friday things weren’t improving. I was now on 2 different antibiotics and oramorph every 4 hours. The doctor came and said they wanted to put a needle in my back to remove some of the fluid to see if it poison.
It was, not only that but an ultrasound had show that the poison was in pockets that had been created by poison solidifying.
I was transferred to a larger hospital that has a specialist lung and cardiac wing and is one of the uk lead hospitals in this field.
I got to the hospital, was admitted and then within a few hours I was in surgery. I woke up in intensive care, I spent a few days in there. I had 2 drains inserted. When the surgeon came around I was told that they were unable to do it by keyhole and had to do a Thoracotomy. I have a huge scar around from my side and around my back (around 8 inches). I was told that my lung was covered and was collapsing, and they removed over 2 litres of poison out of my left cavity.
I spent another week in hospital on oxygen, lots of oramorph and with 2 drains in, then a week at home with the last drain and lots of oramorph.
I’m having quite bad pain where the incisions were made, especially where my lat muscle was sliced. I also have developed this neuralgia (which seriously hurts) on the front of my left chest.
I have very little energy, I was told at hospital that my breathing was around 50%. I’m was given a walking stick to help with my mobility due to my breathlessness, going light headed and already ongoing mobility issues.

Can I ask some questions please?
*How long did it take until you weren’t so exhausted from even the smallest task?
*When did you return to work?
*How much did your breathing return to normal and after how long?
*Were people around you understanding?
*I have developed this kind of every now and the it’s like I am trying to catch my breath, did anyone else have any strange things develop?
*Did anyone else get the painful neuralgia and did it clear up?
*How long was your ribs, scar and drainage scars sore for afterwards?
*I was told that I was a very lucky man, had I not got to the emergency room when I did I might not have made it. I didn’t realise it was such a serious condition or combination of conditions. I was also made aware that I am not in clear just yet but I don’t know what that means, I did a bit of research that said that there is a mortality rate of 20% of patients with other health conditions who have had an empyema and pneumonia. Does anyone else know about this?

Thanks you so much for letting me share my story, again I am super sorry if I’m posting things to the wrong place. I’ve only just joined.
I look forward to reading your replies.
Have a great day xx

[Dooneymarie]

Hi, I just went through a thorocotomy after pneumonia didnt resolve. I have had chronic for 17 years after some botched surgeries. This surgery has been the worst as far as post op pain. And to compound that issue I was given absolutely NO INFORMATION about pain, exercise, what to expect. I was still thinking I had VATS surgery for weeks afterward. My brain was mush so I didnt put 2&2 together. I am very angry about this. Plus I wss labeled a drug addict by surgeon because I take pain meds. Im suing him if he doesnt fix my reports. The best advice I can give is do research on internet, read comments posted by people who have gone through this. The pain can be scary at times. I will have a great day then 3 days of severe pain. I found that being careful with lifting or reaching helps. If your not doing PT print out exercises. You can end up with frozen shoulder and weak chest muscles. Also do scar massage daily to break down collagen. Be kind to yourself.  Walk if you can. I read this is one of the most difficult surgeries painwise you can have. Its been compared to an amputation. It makes me so angry to read comments of doctors not supporting people and cutting off meds. Which I read can increase pain longterm. Untreated pain does cause longterm complications. Also you can take Motrin to help with inflammation but be careful and skip every for few days so you dont end up with GI issues. Im 5 weeks postop and still struggling. I am so thankful for the internet! Im already in gabepentin for nerve damage. I rhink rhat helps with nerve pain. Anyone who has this surgery is a badass in my opinion! I just wish everyone else
realized that. Good luck.

[Addouk]

Wow it sounds like you’re having as rough a time as me. Thank you for all of that info. The pain thing I can definitely vouch for..I have spinal conditions but even they weren’t as bad as this. Your surgeon sounds like they were a nightmare. I take pregabalin twice a day, morphine tablets twice a day and oramorph 4 times a day so god knows what your surgeon would make of me. I wasn’t given any aftercare info from the hospital either. I didn’t know about doing the exercises, about the massaging of the scar. I hope you start to feel better and stronger soon x

[Dooneymarie]

Its so good to be able to connect with others because you start going crazy with thoughts, is this normal, will I ever get well, ect. Yes my surgeon is a true peach. They set us up for MORE pain by not telling us anything . I was already on morphine and got one measly immediate release for this surgery. Thanks to the corrupt  CDC. Anyone who questions our pain can kick our ***. I dont wish ill on people but would like them to experience what we have and see if they can take a Motrin and be good with it. I follow 2 pain sites and its sickening what happens to pain patients these days.

I dont think I will be going back to work as I have 2 other painful conditions.  I didnt answer all your questions but were you working and how much time do u have off work?

I had 3 crappy days this week. Was it because of cleaning house or just because its going to be painful. This is the most challening surgery because you just dont know. I found this site in looking up answers. If you can go back and see other comments . It can scare you but there are people that did great. And it makes you feel like your not crazy when you compare notes. People in pain are the strongest people Ive met, so dont ever ever feel like your a wimp or anything negative about how your coping. Let me know how your doing I dont know you but I care.