Major Surgery

Does anyone have experience of Parkinson’s deteriorating after major surgery? Or does anyone know of anyone with Parkinsons who has donated an organ? My husband who is 72 and has had PD for 10 years really wants to donate a kidney to our daughter and has been assessed as able to do this, but the only concern is that the operation might have a detrimental affect on his Parkinson’s. Does anyone have relevant experience to help us weigh up the pros and cons?

Hello MrsHH
I think you need to talk to your husband’s medical team about any concerns there may be about his undergoing such surgery and the impact this may or may not have on his Parkinson’s. I also think you need to find out from them what your husband is likely to experience after his surgery eg fatigue, discomfort or whatever - forewarned is forearmed.

However, I don’t know how relevant this is to you, but as well as Parkinson’s I was diagnosed with Normal Pressure Hydrocephalus a few years after my Parkinson’s diagnosis. I underwent surgery to have a shunt put in. This is in effect, if you don’t know, a drainage system where a thin flexible tube is inserted in the brain with the other end at an appropriate site where the fluid can drain safely - in my case my stomach. I know that is not the same as the kidney op but I think you will agree it could come under the ‘major surgery’ title you were asking about. It did not have any negative effect on my Parkinson symptoms, but what the hospital did do was schedule my surgery to try and keep my medication timing as close to normal as possible and I think that helped psychologically as much as anything else. It is also worth noting that I did not have too many problems with having a general anaesthetic but that could upset the efficiency of his medication if that were the case.

I’m not sure this helps a lot since we are talking about two entirely different things but maybe it will help in a small way.

I wish your husband, daughter and you well, you are clearly facing a difficult time and hard decisions. I hope it all comes good for you.

Very best wishes.

Hello Mrs HH
This is a big decision. You husband is at significantly increased risk of delirium post op and should be assessed for this. You will need to speak to the transplant team and express yr concerns about this. I am sure given then nature of this surgery every effort will be made but you need to ensure the risk is minimised. Post op he should be kept quiet, well hydrated and most importantly mobilised at the earliest opportunity. You should be able to find the NICE guidelines for the prevention of delirium and ensure they are followed assiduously. This is critical for pwp.
I am sure with good communication between you and the team this particularly sinister side effect can be by passed.
I wish you every success with this particularly inspirational procedure.

Much love

Hello Mrs HH
What a wonderful thing your husband wants to do for your daughter and achieving it will surely give him a huge sense of achievement that he has been able to help. With regard to surgery and Parkinson’s, my husband underwent 17 operations in an 18 month period owing to Sepsis and at one point he had surgery every day for 3 days. Yes without doubt this had an affect on his Parkinson’s but none were permanent or long term.
Hallucinations and Delirium were caused by morphine given for pain which didn’t mix well with his Parkinson drugs after the first instance he requested no opioids for pain relief which was much better.
The biggest problem every time was maintaining his Parkinson’s drugs being given at the correct times and in the 3 different Hospitals he was in not one achieved this. Not getting medication in time certainly impacted his mobility and mindset. His anxiety was worsened too. Recovery was always longer, would say sometimes double that expected. Hope this helps a little - all the very best and hope all is successful.

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