Post Portacath Insertion Medical Update

Thank you to everyone who has been following my health journey recently. It has been a long process but I am happy to say that I have finally received my port a cath and will be resuming IVIG treatments next week. 

My surgery went incredibly smoothly and I am very happy with the results. The private hospital we attended provided a quiet and dark room with direct admission and the patient transport services were very accommodating and did a great job of minimizing my exertion and keeping my legs elevated. The surgery was done under general anesthetic and I have no memory of the procedure. It was by far the easiest hospital visit I have had since my severe ME started.

I owe a great deal of thanks to my dad (pictured next to me in ambulance) who arranged this procedure as all accommodations had to be planned out in advance. 

Some mistakes we made that others should seek to avoid include: 

We did not ask for a local anesthetic without adrenaline to be used. This slipped our minds because I was given general anesthesia. However, it made sleeping the first night extremely difficult and did not wear off for a full 24 hours. 

The recovery room was very loud and bright and I was required to wait there while a chest X-Ray was done to confirm placement. I recommend either asking that sedation be continued until placement is confirmed and you can be returned to your room OR that you be allowed to recover in the ward. 

Now that my port has been inserted we are working hard to get it accessed soon. I have been given fluids via a peripheral IV to minimize my crash and we hope to give me more fluids through the port starting today. 

I am doing surprisingly well regarding #PEM. This may be due to the large amount of fluids, the fact that I am still taking steroids, or just our preparations paying off. I also do not have great data on my crash as my HRV monitor is difficult to put on due to the surgery site. 

I want to strongly stress my privilege in receiving this treatment. The ability to use a private hospital, consult numerous specialists, and access IVIG and Xolair all would either not be possible or take years longer to arrange were it not for my family's privilege and personal funds. 

Effective and compassionate care should not be a luxury. The treatment I receive should be available to anyone who needs it. I encourage every patient and their families to fight for the accommodations I have had access to. 

The NICE guidelines support severe ME patients in receiving a quiet and dark private room, patient transport, and devices like ports and feeding tubes for those who need them. Treating patients with respect and providing dignity, palliative care and pain relief is not a radical request. 

We must demand that evidence-based guidelines be followed. We must demand that countries like Australia update their guidelines to match recent evidence-based documents from the US and UK. We must demand that serious immunotherapy like IVIG is researched and trialed for severe and very Severe ME patients and that MECFS research does not exclude those too sick to attend clinics. 

To everyone who is thankful for my recovery after this surgery, I urge you to support others like me and to help all pwME receive the care we need. To all the doctors and nurses who helped me this week, thank you. I am so grateful for your care and I hope that I was able to give you a tiny glimpse into a patient population you rarely see but that needs your help.

Unfortunately despite taking some steroids my Behcets is not happy with the low IVIG levels I currently have. My joint pain has been fairly severe and I am also experiencing a bit of recurrence of neurological symptoms in my right leg. Thankfully my migraines have not gotten significantly worse. I expect my Behcets symptoms to improve significantly as soon as I receive more IVIG. 

My mast cell issues have been decently controlled and I believe the Xolair is making a significant difference. I am hoping that they will not be a permanently severe issue once I finish titrating to a full 300ml of Xolair. 

While I am still recovering, I have been able to do some writing again and will have some posts coming out in the next month or two including a severe ME awareness day post, a full guide to getting a port as a severe ME patient, and a series on histamine disorders based on my recent experience.