“Sinking in bed syndrome”…in the last 15 months 5 friends & fellow lung disease patients have experienced the following decline spiral that ended in their physical death. The steps were:

1. Increasing SEDENTARY lifestyle after lung disease diagnosis

2. Because of this inactivity they became physically weaker which led to poor SHALLOW breathing and greater supplemental oxygen needs.

3. This led to a level of hopelessness and depression and an attitude of accepting their decline

4. They watched their SPO2 constantly and began to complain often of rapid desaturation and shortness of breath when getting up to do anything, so they just stopped getting up!

5. Their only voiced hope was for some new “medicine” or drug trial to cure them

6. In their weakened state they experienced an acute exacerbation of lung function followed by severe anxiety over shortness of breath and low saturation and as a result they were ADMITTED TO THE HOSPITAL

7. They were placed on high flow oxygen and many tests were performed over the following days.

8. They were completely bedridden in the hospital and not encouraged or required to get up and move at all.

9. Physicians were at a loss of what to do other than standard hospital protocols of high steroid doses and breathing treatments.

10. They were mostly isolated from loved ones in the hospital and surrounded by lights and and invasive alarm sounds of medical equipment constantly and were awakened throughout the night for medications or blood pressure checks—their sleep suffered and was replaced by drugs for sleep which left them mentally foggy the next day

11. Their physical decline became more rapid, their breathing more shallow

12. Their supplemental oxygen needs increased daily. Transplant options were discussed but they were too old or too sick to qualify.

13. They couldn’t be released from the hospital due to their low oxygen saturation. Hospital staff discussed with the family the need for a transfer to a convalescent rehab facility .

14. Their hope was further diminished and depression increased.

15. They experienced respiratory failure and their family contacted me to tell me they had passed away.

If you are the loved one of a patient, help them move as much as possible every day. Even if they are hospitalized, advocate for daily walking with the help of the staff. Turn up their oxygen if they are desaturating, start with slow light activity and increase every day.

Remember that as a rule of thumb every week of bed rest requires 3 weeks to recover—if they recover at all.

Below is a video from a well known doctor regarding Sinking in Bed Syndrome :

https://youtu.be/sBBARxEPZnY?si=X5ie8r2JsQf4yUtM

#lungdisease #pulmonary fibrosis #copd