Picking Up the Pieces After a Failed Lungs Transplant at MGM Healthcare(India)

[Karmen]

YES YES and YES. I really related to this article and the “what you were told” vs. what the reality was. Thank you. As someone who is also in healthcare (mental health) I am trained to talk to clients all the time about treatments, options, etc. I did not feel that we were fully informed, not ever. And although there are an almost unlimited variety of complications it would have been nice to be informed about the most common complications, especially as my mother was 75 at the time of the procedure. This is the first time I have felt like my experience was validated by another person, again thank you for this.

Further complicating my reality is that I understand that for some their new lungs give them a new lease on life and I have this sense that sharing my family’s poor outcome somehow takes away from the celebration of others. But, the need for transparency is desperately needed. After my mother died I found so many other discussions of complications in Facebook groups than I did from UMOS or our transplant team which mentioned almost nothing. I wish that my mother after 3 years of living with pulmonary fibrosis had been fully informed as she would most likely have not gone through with a transplant, been allowed a more peaceful death at home, not an ICU unit, and those lungs could have lived on with someone else.

[David Ota]

b-u-singh

Thank you for sharing your experience. I read your blog posts, and they paint quite a picture. It is difficult for me to identify with your experience. The medical care and cultural differences between the US and India seem huge. One thing that transcends Countries and cultures is numbers. Your table of survival statistics was to me horrible. If I did my math correctly 4 of 14 double lung transplant recipients survived 1 years post surgery. Less than 30%. I am a double lung transplant recipient in the US. If I was presented those numbers when I had to make my decision to move forward with or without a transplant, they would have made me pause. The raw numbers I was presented with was 90% survival after year 1, and roughly a 90% chance of survival each subsequent year, with a median life expectancy of 6 years. I am approaching year 8. I do not know what my decision would have been given your table. Your mother was a brave woman. Peace.

[Paul D Boccocelli]

So sorry to hear of your experience with your Mother’s failed transplant. I was exceedingly fortunate to have my double lung transplant performed by a very experienced transplant team at Dignity Health, St. Joesph’s Hospital and Medical Center in Phoenix, Arizona in September of last year 2023. I was also aged 75 and except for advancing ILD, in generally good health. My surgery took about 2 1/2 hours start to finish and I was discharged from the hospital after 15 days, oxygen was discontinued except for 1.0L at nighttime after about the fifth day. I was up ambulating on the second post-op day and everyday thereafter. My medical team, not just a single doctor, the entire team involved in my pre-op and post-op care, visited me daily for the first week or so, the nursing and support team were exceptionally well trained in treating and caring for transplant patients. I’m not sharing this to trumpet my horn or praise the team at St Joesph’s, although the team is richly deserving of praise. I’m sharing it to acknowledge just how fortunate I was/am. I wish your Mother, {and all transplant patients}, were able to have the outcome I’ve had.

[momo]

So sorry for your loss, i found your post very informative, its so important that proper research is done into the pros and cons of under taking a lung transplant. Iam 73 years of age diagnosed with ILD Jan 2018, because of my quadruple by-pass my care team and i opted not to proceed with a lung transplant as the risk is to high, at the moment iam stable, no oxygen but showing gradual lung decline at some point of time that will change. I have good quality of life at the moment with some restrictions more than likely if i had opted for a transplant i wouldnt be writing to you today, iam at peace with my decision .Rest assured that your mother is looking over you and your family and that you did your best to prolong her life and for that she would be so grateful. Kind Regards