RJ

[RJ]

I forgot to mention I was on Oxygen for 4 months before surgery and the purifiers were by me …on 24/7

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[RJ]

I looked into it over 2 years ago, but ended up getting several Dyson air purifiers instead,  one for each room, that have worked really well. Had my lung transplant 5 months ago and am still using them regularly. Very happy with them.

 

[RJ]

@mark-koziol

It is so helpful to hear of how each of you has dealt with life post transplant.

David, I feel exactly like you, terrified to be out in the sun, in the garden or pick up anything more than 10 lbs, even my grandbaby! This is the new reality of my life and I am hoping after a year or two things will get better. However, my voice is not improving and last week after more testing I was informed that during the transplant I have paralysis in my vocal chords that is not going to resolve itself.

I am exploring my treatment options for the paralysis now. Has anyone had this problem and if so, did it get resolved and  what did you do?  Please do share.

[RJ]

Thank you Mark and Eileen for sharing your experiences.

I had my single lung transplant the end of May and was dismayed by the tremors in both hands as well as the loss of my voice. Has anyone else experienced problems with their vocal chords? If so, what did you do?? I am also experiencing foggy memory. These side effects are very alarming.

[RJ]

Katie, love your suggestion of sharing book titles. “When Breath becomes Air” is a favorite along with “Chasing daylight” by Eugene O’Kelly. While dealing with end of life, and poignant, they put things in perspective. If you have not kept up with it, Kalanithi’s wife has remarried — to someone who lost his young wife tragically.

Another author I love is Canadian Louise Penny and her Inspector Gamache series.

On another note, I’d like to know if any of you have met and talked to other IPF patients in person.  I have yet to meet someone who has it and feel very alone in this journey.

 

[Author]

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