When CIDP Affects your Breathing

By Ayoposi Ojelabi · Published: 1 April 2026

Most descriptions of CIDP focus on the limbs. They describe weakness in the hands and legs, numbness, and the loss of reflexes. What they rarely describe is what happens when the weakness spreads beyond the limbs and begins to affect the muscles that support breathing.

This essay is about that part of the journey. Not because it happens to everyone with CIDP. It does not. Respiratory involvement is uncommon. But when it does happen, very little is written about what it feels like from the inside. When you are lying in a hospital bed connected to a machine that is breathing for you, it helps to know that someone else has been there and found a way through.

When Breathing Became an Effort

The first sign that my respiratory muscles were in trouble came in October 2023.

By that point I had already been treated with steroids, IVIG, plasma exchange, mycophenolate, and cyclophosphamide chemotherapy. My body had been under sustained pressure both from the illness itself and from the treatments designed to stop it. The weakness had been spreading gradually for over a year.

Then breathing became difficult.

It did not arrive suddenly. It crept in the way most of this illness crept in. Quietly. Gradually. Until one day I noticed my chest felt tight and my lungs felt heavy. Movements that had nothing to do with breathing were exhausting my respiratory muscles. My body was struggling to do something healthy people rarely think about at all.

I was placed on non-invasive ventilation. The NIV machine sat beside me at night and pushed air into my lungs with a rhythm I could not control. Each night I lay there listening to the soft mechanical rhythm of it, wondering whether breathing freely again without assistance would ever return.

After the Transplant , When the Machines Took Over Completely

By August 2024 my breathing had deteriorated to the point where non-invasive ventilation was no longer sufficient.

On August 6, 2024, the final day of the stem cell transplant process, I noticed difficulty breathing before going to sleep. I told myself it was exhaustion. I had already been through so much. I went to sleep.

On August 7, I woke up intubated and unable to speak.

My lungs had failed during the night. There had been no time for discussion and no warning that I recognised at the time. A tracheostomy had already been performed while I was unconscious. When I woke, I could not speak. I could not move freely. Machines were breathing for me completely.

Waking to discover that your body has handed over something as basic as breathing to equipment is difficult to describe. It was not only physical. It was the shock of losing control over the most fundamental function a human body performs.

Life on a Ventilator

What followed was ten months in intensive care across four hospitals.

During that period my breathing was maintained entirely by machines. I was transferred from University College London Hospital to Salford Royal Hospital in October 2024, and every transfer required careful planning around ventilatory support. Moving a ventilated patient between hospitals involves specialised staff, timing, and equipment travelling with you.

At Salford Royal the team worked for several months attempting to wean me off ventilation. They reduced the pressure settings gradually. They reduced oxygen support step by step. Each time they did, my carbon dioxide levels rose above normal, a sign that my lungs were not yet able to remove carbon dioxide effectively without assistance.

The attempts were careful and consistent. The results were discouraging.

During the same period they attempted to cuff down my tracheostomy so that I could regain my voice. This also failed repeatedly. My vocal cords could not function while my lungs were still too weak to support unassisted breathing.

I communicated through an alphabet chart.
One letter at a time.

Wythenshawe : Where Things Changed

In January 2025 I was transferred to Wythenshawe Hospital in Manchester, which specialises in long-term ventilation cases.

What six months of attempts elsewhere had not achieved was accomplished here in two weeks.

The tracheostomy cuff was successfully reduced. My voice returned. I heard myself speak again for the first time in months. Hearing my own voice again after months of silence changed the atmosphere of the recovery itself.

I was also transitioned from the large hospital ventilator to a smaller portable machine, the Nippy 4 ventilator. This made it possible for me to leave intensive care and move onto the ventilation ward.

Desaturation and Learning to Drink Again

Regaining my voice introduced a new challenge.

With the tracheostomy cuff reduced, my oxygen levels dropped whenever I drank thin fluids. This is known as desaturation. The oxygen saturation in the blood falls below a safe level. Drinking water, something healthy people do automatically, now required monitoring, careful positioning, and sometimes temporary oxygen support.

Between January and March 2025 I paid close attention to how my body responded to different fluids and different volumes. I learned the safest way for me to drink through careful observation and adjustment. It was a process no one else could do for me.

By the end of March 2025 my oxygen levels stabilised. I no longer required supplemental oxygen and was breathing room air again, although portable ventilation support remained part of everyday life.

After more than a year of mechanical ventilatory support, returning to room air without supplemental oxygen felt like something I had earned back step by step.

What This Taught Me About CIDP and Breathing

Respiratory complications are not the most commonly discussed aspect of CIDP, but they are real and they can be severe.

For anyone reading this who is facing declining respiratory function as part of their CIDP journey, I want to say a few things clearly.

It is frightening. Being connected to a machine to breathe was one of the most confronting experiences of my life, and there is no value in pretending otherwise.

But it is also manageable. Respiratory and ventilation teams work with this level of complexity every day. The weaning process is slow and sometimes discouraging, but it moves.

And the voice does come back.

Mine did. After months of alphabet charts and FaceTime calls where my wife read my lips for the nurses, I spoke again. Slowly at first. Then more clearly.

Recovery did not arrive all at once. It arrived step by step.