Port Insertion For Severe ME Patients… A Guide
As a severe ME patient who recently got a port, I wanted to gather the information I have learned in this process to create a guide for other patients and caregivers going through this process.
Port surgery itself is quite a simple and low-risk procedure. However, there are significant risks to having a port long-term. Additionally, any hospital admission for severe patients comes with significant risk.
This post will cover the decision and process of getting a port for severe ME and POTS.
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Who should get a port?
There are 3 components to the decision to get a port.
1.) Poor venous access
-Small, deep, or fragile veins that have been overused and have significant scar tissue.
-Vein spasm and inflammation making IVs uncomfortable
2.) Need for IV treatment
-Need to give lengthy IV therapy like IVIG
-Need to give IV medication that can only be given through a central line (for comorbidities)
-POTS that is poorly controlled with options other than IV fluids
-Benefit from IV vitamins or medications
-Need for supplemental hydration or nutrition in very severe patients
3.) Convenience or increased accessibility of treatment
-Ability to self-administer fluids if able to learn self-access
-Potentially lower infection risk than very frequent IV access
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Who shouldn't get a port?
If you can manage your condition without IV treatment you should not get a port. If you have not yet tried oral medication for POTS, ME and other comorbidities you should try that first. Similarly, you should try oral supplements before IV.
Some risks to consider include:
-Sepsis
-Blood clots
-Undergoing surgery and recovery
-Hospital admission
Additionally:
You will need monthly port maintenance until it is removed
You will struggle to get a referral if you are not severely ill
Also consider:
Would a feeding tube be more helpful? Saline can also be given through NJ tubes.
How often do you need IV therapy and are peripheral IVs feasible?
Is the time right? While a port has the ability to make a massive positive difference to severe ME patients the strain of the surgery is quite significant. Timing should be carefully considered to minimize risk when possible.
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Getting a Port Referral
For patients with ME the most likely person to prescribe a port is a POTS specialist who will prescribe the port for IV fluids if:
-The POTS severely affects your day-to-day life and mobility
-You have tried oral medication and lifestyle adjustments
-You have received IV fluids before and they help you significantly
If you do not have significant POTS but want a port you may be able to have it prescribed by a neurologist or rheumatologist for any IV treatments of comorbid conditions.
If you have only severe ME it is also possible for a GP to refer a patient for a port directly. However, this is not super common so you will need a supportive GP who knows you well or a specialist GP who works with a lot of complex patients.
When asking for a port emphasize the benefits in functioning you have received from IV treatment as well as the frequency with which you require peripheral IVs. Doctors want to minimize risk and so will generally not prescribe ports if frequent IV therapy is not considered essential.
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Choosing a Port
Once you have decided to get a port there are a number of considerations for where it will go and what model device. Note that for the most part none of these considerations should be deal breakers as the main function of the port is the same regardless.
Considerations:
You will be unable to sleep on the side your port is placed on at least temporarily.
While most patients find ports comfortable, ports inserted into the subclavian vein have shown slightly higher patient comfort than insertion into the jugular vein.
The subclavian vein is close to the lungs meaning there is a small (1 in 1000) chance of causing pneumothorax which can require additional hospital treatment. This risk is insignificant for jugular vein insertions.
The left subclavian and right jugular veins tend to be the preferred locations by surgeons.
There are both power ports and media ports. In general, power ports are preferable as you can run contrast for MRI and CT scans through them.
There are single and double-lumen ports. A double lumen port allows for running 2 drugs simultaneously in separate lines. A single lumen port should be sufficient for almost all severe ME patients.
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Hospital Arrangements
You will want to arrange patient transport to and from the hospital. It is best to call ahead and inform them of your needs. They should know:
-You need slide sheet transfers
-You will have a blackout mask and noise canceling headphones for the duration of the trip
-You need your legs raised
-When you arrive at the hospital you will be directly admitted
The hospital will need to know
-You need a dark quiet private room
-You need to be directly admitted to the ward upon arrival
-You need a caregiver to stay with you (there should be an exception to covid visiting rules for disabled patients)
The surgical team will need to know
-You should be given at least 2 liters of fluid while in hospital, it can help to have this listed on your port referral
All accommodations should be communicated in advance. It may help to send and print the NICE guidelines section on severe ME hospital admissions.
Upon arrival at the hospital, you should have your caregiver go in and fill out any paperwork as well as find out what room you will be sent to before your stretcher is taken out of the ambulance.
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Recovery
The best tip for recovery is to follow all the tips for the hospital visit. However, you should also be prepared with:
Cold packs to ice the port on and off
Hydration infusions (including peripheral access option if port is not immediately accessible)
A home care nurse experienced in ports
Port access supplies
A 30-degree bed wedge to allow you to lie on your side without compressing your chest
Lots of pillows for positioning
A carer who is able to help you reposition every few hours
Pain relief (Tylenol is sufficient for most. But CBD or opioids may be helpful in promoting rest and recovery.)
Medications pre-dispensed for the week or someone to help you with meds
Food that can be easily eaten lying down
Comfortable clothing that you do not have to pull over your head. (Or you can just be naked)
Any mobility aids or care equipment you need in a severe crash
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Long-Term Care & Accessing
Local anesthetic may take up to 3 days to wear off. Make sure to be careful with the port even if it feels fine. It will take around 14 days for the site to fully heal.
Once fully healed you do not need to cover the port unless it is accessed.
Make sure you have arranged a nurse to come and access your port regularly the first month after having it inserted, and until or unless you or a caregiver learn to access it.
If you are able to you should learn to self-access your port to minimize infection risk. Talk with your doctor about this. There is also an excellent tutorial by The Frye Life on Youtube.
You may also want to teach your primary caregiver how to access your port.
Remember to always be extremely careful with the sterile procedure when accessing your port. You or a caregiver should memorize the procedure and never let a nurse touch your port if they have not followed the sterile procedure. The port should always be covered with sterile dressing when accessed.
See the attached PDFs for buying port supplies in Australia and a detailed checklist for accessing your port.
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Tips and Tricks
Mobility will be limited by the surgical site. This may make toileting difficult and you may need more help.
Be prepared to need help with tasks you can normally do independently such as taking medication, eating and drinking, adjusting pillows or blankets and so on. You will also need the ice changed.
Ask the anesthetist to use a local anesthetic that does NOT contain adrenaline. (Note that even if you are under general you will still receive local anesthetic unless otherwise discussed)
You will probably want general anesthesia for the procedure to minimize exertion. Make sure the surgeon you choose can accommodate this.
Taking valium or another benzo before going to the hospital can help with sensory sensitivity.
If you have long hair tie it back in tight braids or a similar protective hairstyle before leaving to give yourself time before you have to brush it again.
Ask to minimize the time in the recovery room and to not be taken down to surgery until they are ready for you. The pre and post-op waiting rooms are bright and loud.
You will likely not be allowed headphones during the surgery so you will want to wear earplugs and headphones. You should be allowed to wear a sleep mask the whole time.
Bring a small tote bag that can hold noise canceling headphones and spare KN95 masks. Ask that it be placed on your bed as soon as you are in recovery. Assume they will lose the first mask you were wearing when you came in.
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The decision to get a central Line or portacath is one of the biggest decisions that people with severe ME face. While port Placement can be one of the biggest factors in a patient's recovery, it can also easily incur the life-threatening complication of sepsis.
For me the decision to get a port was easy, my veins could no longer receive IVIG to prevent further neurological degeneration from Behcet's vasculitis.
But for patients who benefit greatly from IV Fluids, the decision to get a port often is a balancing act between quality and quantity of life. Risking a chance of death to make your quality of life worth living. While doctors can and should educate patients thoroughly on the risks and benefits of a port, only the patient can really determine whether the risk of sepsis is a worthy trade-off for the improvement in health.
This post aims to share as much of what I have learned in the past 3 months of working to get a port. While ports are the topic of this post, much of it applies to central lines of any sort. I highly recommend if you are interested in getting a port, PICC, or hickman that you join some Facebook groups about central lines so you can better understand the reality of living with these devices. My tips and advice are directly based on my (quite positive so far) experience. Others may feel differently and have different advice.
For example, some people cannot wear a bra at all when their port is new or even when it is healed. But others find wearing a well-fitted bra essential to comfort when they are healing from surgery.
Myalgic Encephalomyelitis is a severe illness and very Severe ME can be deadly. It is essential that doctors understand how sick patients with MECFS can be because otherwise, they may fail to prescribe patients with appropriate treatment due to their belief that the treatment is riskier than the disease or they don't believe the patient's suffering is worthy of palliative care.
Just as ambulatory wheelchair users may benefit greatly from a chair despite being able to walk short distances, pwME may benefit greatly from a port even if they can drink and eat orally so long as they are unable to meet their hydration and nutrition needs. While the decision to get a central line should never be taken lightly, it is inappropriate to deny medical intervention until the condition becomes life-threatening. No patient should be forced to starve or dehydrate to the point of delirium solely so a doctor can feel that their patient "proved" the need for an intervention. First Do No Harm does only mean not only apply to the active decision to provide treatment, but also the passive decision to allow patient suffering and disease progression by denying effective treatment.
