Scared my partner is going to starve or die of dehydration in the hospital

[Countrygirl]

@Countrygirl Not sure if you have any ideas on how to get them some help here? Hope you don't mind me tagging you but you helped me out two years ago.

@SpinachHands

I am so sorry but I have only just seen your posts.
@SpinachHands @Seadragon

These situations are a nightmare and we have several similar ones in the UK.

A hospital stay is rarely helpful and it always includes a very long fight to get them to take the disease and MCAS seriously. Frequently, they refuse to do so no matter how strong the evidence with which they are provided. There is a significant risk of the patient being diagnosed with mental health issues and an eating disorder as happened with Maeve and others as soon as the disease progresses this far. However, some degree of hospital intervention is necessary but only for a very short period because hospital environments are so toxic for us.

The best results are when the patient stays at home and arranges private feeds but if it is left too long an NG or PEG is not helpful and TPN is required. That raises a host of other issues.

The best outcomes are when the patient stays at home with 24/7 private care. However, they do need a hospital to insert the feeding tube initially. An NG can be inserted at home, but it carries risks and an X-ray is advisable to ensure correct positioning. If funds permit, a private hospital would do this with the least trauma for the patient.

If it is left too long, however, the stomach needs to be bypassed. Many are supported at home with the use of PEG.

Many react to the feeds which must be given at body temperature or the feed will trigger a MCAS reaction.

Some are ordering the E28 essential feed from Amazon as it is less likely to trigger a reaction and that is given at home.

A private medical practitioner is needed to maintain the tube at home as a general rule.

Certainly get the MP involved and it would be wise to engage a solicitor. Tim Arnott of Irwin Mitchell has been recommended. I do have one more name but would have to look it up again.

I can ask Dr Weir to advise @SpinachHands if that would help.

 

[SpinachHands]

There is a significant risk of the patient being diagnosed with mental health issues and an eating disorder as happened with Maeve and others as soon as the disease progresses this far.

We were very aware of this, the doctors kept pushing my partner to speak to a psychiatrist which they refused every time.

if it is left too long an NG or PEG is not helpful and TPN is required.

Would it not be helpful because of the level of malnourishment, or the raised sensitivity of the MCAS? The gastro's idea was to get the MCAS under control with H1 and H2 antihistamines and to then try IV and naso-jejunal feeding once their MCAS would be less reactive so they could actually tolerate it. However they've had MCAS flare up from both meds prescribed unfortunately, so the IV/feeds are still not possible. We're speaking to Dr Tina Peers tomorrow who agreed to an urgent appointment who can hopefully help further.

must be given at body temperature or the feed will trigger a MCAS reaction.

This is useful to know! In terms of if/when they're able to tolerate IV/tube feeding, it's supposed to be being arranged by colleagues of the private gastro, at our nearby NHS hospital. If they don't agree, we were going to ask about private home options, as I've heard this gastro has arranged that for people before. He's also offered a private inpatient stay at his hospital, but my partner wouldn't manage the trip to London.

I can ask Dr Weir to advise @SpinachHands if that would help.

Thank you, I did actually get his private secretary's number at Harley Street from the ME association I think? She gave me the quote for a home visit (which is amazing that he can do) but I'm emailing her a bit more about my partner's symptoms first, I wouldn't want him to come all the way out here only to not really be able to help- I don't doubt he's a fantastic doctor, but in terms of my partner's ME they've actually been recovering over all this time, albeit slowly thanks to all the comorbidities they're having to deal with. Do you know if he has much experience with MCAS and dysautonomia?

 

[SpinachHands]

We were very aware of this, the doctors kept pushing my partner to speak to a psychiatrist which they refused every time.

Would it not be helpful because of the level of malnourishment, or the raised sensitivity of the MCAS? The gastro's idea was to get the MCAS under control with H1 and H2 antihistamines and to then try IV and naso-jejunal feeding once their MCAS would be less reactive so they could actually tolerate it. However they've had MCAS flare up from both meds prescribed unfortunately, so the IV/feeds are still not possible. We're speaking to Dr Tina Peers tomorrow who agreed to an urgent appointment who can hopefully help further.

This is useful to know! In terms of if/when they're able to tolerate IV/tube feeding, it's supposed to be being arranged by colleagues of the private gastro, at our nearby NHS hospital. If they don't agree, we were going to ask about private home options, as I've heard this gastro has arranged that for people before. He's also offered a private inpatient stay at his hospital, but my partner wouldn't manage the trip to London.

Thank you, I did actually get his private secretary's number at Harley Street from the ME association I think? She gave me the quote for a home visit (which is amazing that he can do) but I'm emailing her a bit more about my partner's symptoms first, I wouldn't want him to come all the way out here only to not really be able to help- I don't doubt he's a fantastic doctor, but in terms of my partner's ME they've actually been recovering over all this time, albeit slowly thanks to all the comorbidities they're having to deal with. Do you know if he has much experience with MCAS and dysautonomia?

@Countrygirl however, if you do have contact with him and can ask if he could advise, it would be enormously appreciated! We're located in Bristol, but if it's easier and he could even do a brief video or phonecall just to see if he could help, that would be amazing.

 

[linusbert]

We were very aware of this, the doctors kept pushing my partner to speak to a psychiatrist which they refused every time.

good choice, i should have done the same. this talks seam to me to be proforma anyways.