Not open for further replies.

Diane H

Senior member
Sep 28, 2013
Fort Wayne
I just spent 4 days in the hospital with a collapsed lung and the worst part was a sore butt from the mattress!
It started with the sniffles and a scratchy throat. I went to the doctor to see about an antiviral which they recommend right away for ALS people. Turns out that all there is is Tamiflu which is only for the flu, not a simple cold. I did get an antibiotic to prevent a secondary infectionon. Sore throat was gone in a day or so and I was fine until Monday evening when I felt pressure building in my lungs. I inflated my trach cuff to see if that helped, and it did, but I figured a trip to the ER for a breathing treatment was sensible. I have the nebulizer but never need it and the medication is always expired! So, off to the ER. No breathing treatment because I wasn't wheezing. Chest X-ray said there was some collapse of my left lung so they admitted me. The insertion of a chest tube to allow reinflation of the lung was delayed until the morning because with the ventilator I wasn't in any distress.
I didn't think to ask for a bed with a pressure relief mattress at that point. No rooms in ICU where anyone on a vent has to go even if they are there for a toenail problem! So, a regular bed was brought to the ER so I could get out of my chair. It took an extra hour to locate a Hoyer lift to get me into the bed. I was moved to ICU late Tuesday AM and the chest tube was put in. I had been dreading that having seen it done, but times have changed and it was only a brief ouch as the small tube was pushed in between my ribs. The guy who inserted it was great -- informative, gentle and funny! Then he removed over 500 cc's of amber fluid that had been building up between my lung and chest wall. I had been noticing that it was getting harder to be popped off the vent for transfers and getting dressed, but it was over months and I figured it was just a continuation of what had been going on for years. But apparently it was due to the increasing compression of my left lung from the fluid pressing on it. Then the capsule around the lung was under so much pressure that it had a flat tire. That is technically a pneumothorax. "Blowing a pneumo" is usually sudden and breathing is very difficult but being already on the vent spared me that and I was perfectly comfortable. A valve was put on the tube to let the pocket of air outside my lung escape.
X-rays showed the air was gone by Wednesday afternoon so the tube was removed. By then my butt was burning but I didn't have the redness or skin breakdown to meet the criteria for getting a pressure relief mattress! I was supposed to turn to relieve the pressure but my hips and shoulders couldn't take much of that. Really pissed me off and letters of complaint will be written! The nurse call button was replaced with a soft press button that wasn't soft enough to work unless it was precisely positioned so I never trusted it. So John only left when my friend Kathy or Karen could be there. He did have a good recliner to sleep in but with nursing checks, 3 am lab draws, 4 am chest X-rays, IV fluids and antibiotics, and pills through the feeding tube to be given, sleep was scarce.
The nurses and other staff were terrific. I wanted so much to be able to chat with them but deflating my trach cuff while lying down made the vent beep constantly so I reserved actually talking for major issues. The rest was lip reading and Karen is the only person I have ever met who was good at that! So all my hysterically funny quips were lost. John got to the point of asking me if what I was trying to say was important or just me trying to say something funny!
Thursday night my feeding tube cracked and started to leak. Taping over the little split MacGyvered it perfectly well but the entire medical community became fixated on replacing the tube before I went home. I had been planning to have it changed before Christmas because the cap tended to leak a little, but John's boss started having chest pains again and resisted going in for another cardiac catheterization and the needed roto rootering of whichever of his six or seven stents were clogging up. Since John is the only employee, we ended up working for a few hours every day so Steve wouldn't have to pop a nitro tablet every time he carried out a bag of birdseed.
The GI doctor came into replace the feeding tube and suggested humorously several times ("There is a theme here.") that the tube be replaced every 18 months not 7 YEARS! I wanted to say "If it ain't broke don't fix it." but did have to agree that 7 years was a bit long to delay a simple endoscopy procedure.
With the feeding tube replaced I was free to go home. Another search for an elusive Hoyer lift and I was finally in the lift sling and ready to transfer. The Hoyer wouldn't run. Not on battery or plugged in. More staff recruited to manually lift me to my wheelchair. The physical therapist decided a straight lift sideways into the chair was not the best way. Instead she used the sling to sit me up on the side of the bed and then people held up my head, feet, and the vent hose while more people used the sling to lift me, turn me 90 degrees in the air, then set me in my chair completely slouched, twisted sideways, and unfixable without a working Hoyer lift. John tugged me into a more tolerable position and we made our escape. Another letter of complaint to write!
Home with my computer, comfortable chair, correct mattress, working call system, and two days of sleeping for 16 hours and I am feeling good. My ventilator pressure readings aren't back to where they were and deflating the trach cuff to talk doesn't work as well so we are hoping those things will gradually get back to where they were. John is stressed by the changes and by so abruptly being reminded that things can go south quickly. I have even heard him tiptoe in to check on me while I was in bed--something that never seemed necessary before. The doctor said that the extra coughing from my cold could have triggered the collapsed lung but that it was also more common in long term ventilator patients. Now I have to reconsider how many times I want them to patch the same old flat tire if it happens again. I always figured pulling the plug would be my decision when I got a pneumonia that antibiotics couldn't fix, or when I couldn't use the computer, or had a stroke or heart attack or any other added health issue, but that was before I knew about my increased risk of repeated collapsed lungs. Just when you think you've got the angles figured...
Well, back to rolling with the punches.
Happy to hear you are home and on the mend. You write so well that you made the horrors of a medical problem and the " wonderful" expierences in a hospital seem like entertainment. Hoping you quickly get back to your pre event self. Kate
Likewise, Diane, escaping the hospital at anywhere close to baseline is a win.

You hang in there Diane! You're a bit of a poster child for some of us. You and Dr. H.
Diane, You are awesome. Thanks for all the years of giving us help. Glad you're home and on the mend.
What a marathon. I am so glad you got sprung as quickly as you did. I have never understood a place of healing that never lets anyone who is there for treatment actually sleep. It boggles the mind. I am also glad you have returned home- a place of comfort- and have been able to recover in peace.
Diane thank you so much for writing your experience out for us.

What a horror time and to think you couldn't even talk through it all to give some back to em all! I do expect several stern letters from you, it's shocking that you were supposed to get to broken down skin before they would do anything, I'm really quite upset about that one!

We really never know do we, and how complacent we can become even when we think we aren't!

So glad you are back home and with us!
Diane I am sorry to read of your recent experience in the hospital. You tell a good story and it was an interesting, but also it was a heart wrenching story. You have long been a tower of strength for everyone in this community. It is hard to read about how ill prepared hospitals are for providing safe and competent care to people with ALS. It was hard to read about how hard it hit you emotionally --to the point of having to think about "how many times I want them to patch the same old flat tire if it happens again". That gave me a jolt as I have read your posts for several years, and it made me sad to think about losing you. You are a friend to some many. I hope that you rebound quickly without any more adverse effects from this recent experience.
Not open for further replies.