Open Lung Biopsy – My Truth

Four years ago this week I finally gave in to my doctors pleas, and went to the hospital for an open lung biopsy to get a definitive diagnosis for Sarcoidosis. A couple of months prior, I had a broncoscopy which yielded nothing. I have a resistance to anesthesia, and apparently I tried to pull the tube out of my throat during the procedure, so they had to stop without getting a sample lung tissue.

Prior to going in for the operation I could find no detailed information about the procedure other than basic information. I needed to know what to expect, well because I like to prepare mentally for what’s ahead.

My pulmonologist referred me to a thoracic surgeon and I asked him to tell me in detail what was going to happen and what I can expect afterwards. He was pretty detailed on the surgery part, but ended his description with “and you’ll be up and around in a couple of days”. How misleading those words are. I will not bother to go into the actual operation as I was unconscious for that, and those details are now readily available on the internet. What I will describe is my experience after the operation.

My wife said that I was in surgery for five hours, and she of course was freaking out that something was wrong because according to the surgeon, it should not take any more than a couple of hours. I woke up in a double hospital room with me being the only occupant and the first thing that I noticed was the pain. I felt as if I was hit by a bus on my left side while crossing a street. My wife came into the room and the look in her eyes said everything.

I had to compression devices wrapped around my lower legs that would inflate and squeeze and then release. This was a continuous action that proved to be somewhat uncomfortable. It felt like I had on socks that went all the way up to my knees, and they were way too tight. This device was left on my legs for 24 hours. I was told that device was meant to prevent clots forming in my legs.

I had a terrible urge to cough as I woke up and when I did, the pain was like if the bus slammed into my side one more time, with the strangest sensation of what I can only describe as “bubbles” moving around under my ribs, which made me feel to cough more. I would try to suppress the cough due to the pain, but to no avail. There was a tube, about two inches in diameter coming out of my torso on the right, midway between my chest and waist, that lead down to a large bottle on the ground at the side of my bed. As I coughed, bloody liquid shot through the tube and into the bottle. This was continuously monitored by the nurses.

As I coughed, instead of bringing up phlegm, I would cough up globs of blood clots and small pieces of lung. This nurses also said was normal and they monitored what I was coughing up constantly to make sure it was not fresh blood. The coughing up of clots slowly ceased after a few hours, but the liquid shooting out the side continued right through the night into the next morning and eventually stopped by mid morning.

For those first 24 hours I had to lay in bed on my back with the bed elevated about 45 degrees. At first, right as I woke up after the operation, I did not need to urinate, and one of the nurses got all fussy and wanted to insert a catheter. I told her no, that they could wait to see if I did have to go in a few hours because I had nothing to eat or drink for the past 12 hours. Eventually, after a couple of hours, just as they wanted to put in a catheter, I urinated so much, I almost filled up the bed bottle. The nurses also measured and kept track of how much I passed.

After lunch on the second day, my surgeon came and told me it was time to remove the tube. I indicated to the nurse that he was ready and an announcement was made over the hospital’s PA system that there was a code (something) at my room. Soon after a cart, which looked like a “crash cart”n was wheeled outside of my room. This I later learned was in case my lung collapsed when they removed the tube from my side.

My surgeon asked if I was ready and started to pull what seemed like two feet of tube out of my torso. When the end finally emerged, with considerable discomfort I would add, the surgeon slapped some special bandage to the hole to seal it. The nurse asked him if everything was okay and he said yes, so they then announced on the PA, “Code (something) stand down”, and the cart was wheeled away.

I was checked for vitals etc., and then a couple of hour later they came and wheeled me down to x-ray, so it was my first time getting out of bed. The pain to get up and then sit in the wheel chair was excruciating. I thought I was going to throw up. When I got to the x-ray department, I needed to urinate badly and got out of the chair and walked the few step to the bathroom and thought I was going to pass out.

I stayed in the hospital one more night and was discharged after the second night. The walk to the car was horrendous and the drive home was torture when ever my wife hit a bump in the road, it felt like my right side was going to explode.

I eventually took a month for me to be able to sleep laying flat without pain, and about two months to fully recover. I often wonder how patients with cancer who need to have an open lung biopsy can survive if their systems are already so low.

My advice to anyone about to have any surgery, be sure to research what really happens to you afterwards, because the doctors will never tell you the truth.

13 Comments Add yours

  1. Carol Wong says:

    I haven’t have this but have found that with most biopsies they either say it will only hurt for a second or two or they say, you will feel a little pressure. They hold back that you are in so much pain that you almost hit the ceiling!!!!

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    1. Basil Rene says:

      From my experience, and other people’s that I have since read, if anyone suggests you have an Open Lung Biopsy, run for the hills! And i have a very high pain tollerance …

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  2. Jo says:

    So so scary. I am waiting for dates at the moment as to when I will have this procedure done. I do like to know exactly what to expect and after reading this I’m so scared but at least I know and anything better than this will be a bonus. Thank you for sharing your experience

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    1. Basil Rene says:

      Jo, I know it sounds scary and it was a shock. Sorry you have to have this done, and I hope your experience is more positive than mine. The procedure I am sure has improved since I had mine done in 2006. Best of luck.

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      1. jomichelle1 says:

        Thank u for the reply Basil. As you say the procedure has probably got ten better over the past few years, let’s hope so. I get scared at the thought of any general anisthetic and any hospital stay. I’m very nervous about after the op. the doctors have let me know that it’s not going to be nice and it is high risk surgery. They have tried to avoid doing it but it seems it’s the only way to give me a proper diagnosis, which I need to be treated. So far I have been very ill for 8months now with no treatment except oxycontin for pain and my quality of life is awful, just awful. So I’m glad to be heading for some answers finally. They are looking for a positive/negative on sarcoidosis and also I have pulmonary fibrosis which they think is a stand alone disease, so they are looking at this for me to determine what type of fibrosis I have. My father passed away from pulmonary fibrosis so this adds to my anxiety about the whole thing. Fingers crossed. I am praying for the best outcome. I like your blog.
        Cheers Basil

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        1. Basil Rene says:

          Jo, I will be honest with you though – the recovery is not quick and for me it was painful, so you are prepared. I wasn’t. On a positive note, there can be a silver lining. My lungs were badly scarred from sarcoidosis and now after seven years, my last X-ray showed the scars clearing up. A good thing. So there is always hope. Feel better and thanks for dropping by. Best – BR

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  3. lmcurry13 says:

    Wow! This surgery does in fact suck! I had this done in 2012. I was hospitalized for four days. The chest tube is like having a garden hose sticking out of your side. Unlike you though, I enjoyed the weird little devices that were squeezing my legs. I have problems with sarcoidosis in the muscles in my legs though so it felt soothing. And unlike you, they got me out of bed the same day. Amazing now how they do that after surgery, get you up so quickly I mean. I was glad they did though. It actually helped to move around some. The second night I was in the hospital, they didn’t get me up and I was in terrible pain. I never had pain like that before in my life and I also have a high pain tolerance. I think you have to anyway, to survive having Sarcoidosis. My chest wall was stuck to my ribs so the surgery took longer than expected for me and then a few days afterward, when I got home, I got an infection and had to go on antibiotics. I was sick as a dog. To this day, I have what my surgeon thinks is lasting nerve damage because apparently there is a nerve that runs a long the ribs that they often either nick or cut because it’s hard to miss. They got mine good! My right side…two years later is still tender and to top it all off…I actually got sarcoidosis IN my incisions. Oh the joy!

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    1. Basil Rene says:

      The doctors never tell you how bad the surgery is going to be. I hope they don’t do this as a diagnosis for cancer patients because I think that alone will kill them! Sarcoidosis in your incisions! Ow!

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  4. My surgeon explained the coughing gunk up sounds lovely and mentioned the pain but also said I’d be back at PT in no time so we shall see. Your blog was very helpful. My surgery is tomorrow at 7:30am. 🙏🏼 Hope you are in good health.

    Joy at The Joyous Living</a

    Liked by 1 person

    1. Hi Joy! Hopefully for you it will be different and that the technology has improved so you provably may not have the experience I had. Good lick with your procedure and sending healing thoughts your way! Blessings and joy. Basil.

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