286 ~ Signs from above ~

25/07/2021

The euphoria of having someone attend to my infusions was short-lived and now I could not escape the harsh reality of being ignored and stranded.

A deep sigh of defeat

Collapsed veins. Blown veins. Overused veins. Fragile veins

What’s next in the episode of drip dramas 😂🤭 I chuckle to myself making light out of the situation

Then turn focus towards the book titled: A Temporary Gift by Asmaa Hussein; when a message comes through on IG by a dear friend who is also a knowledgeable activist of the Dysautonomia Advocacy Foundation in the US

KLF:

I’m so sorry. The bits you post seem as though it could not get much worse. I think they should have put a port in long ago. People with cancer have them for years. My brother had one in for treatment.

I have very few good veins in my hands but its where they like to put it when I was getting ketamine. They are so uncomfortable!! I pray you get the port soon

K:

Most of my veins aren’t working anymore and if we are lucky enough to access one in a hand it doesn’t hold long enough to take in the necessary amount of fluids I need. External jugular vein catheterization is temporary and you need a person who has some experience in it. So we actually don’t have much of an option now besides seriously considering the port.

We’ve been deliberating on it for a while now. First we were serious then stalled the idea with sepsis concern. Another person mentioned I don’t have enough flesh to hold or support the port due to malnourishment.

But we should discuss how to work out a suitable plan because the lack of access is posing to be more dangerous than maybe having a port 🤷‍♀️🤦‍♀️

Blood clots won’t be a very high risk because my cardiac pill contains an anticoagulant component which cannot be taken simultaneously with other blood thinning medication.

Did ur brother have any infection issues with his port?

KLF:

No my brother did not have any problems. He had Hodgkin’s lymphoma 15 years ago now. Some people have ports in forever and they don’t get infected. Since it’s in your chest it’s not like open to handwashing issues but I will ask him. They typically like to wait and ensure the cancer doesn’t return so it was possibly implanted four years and he never had an infection.

When I would go to the endocrinologist in North Carolina at the cancer center, the first question asked at the lab is if you already have a port. Ports are very common in this country and not an issue. Feeding tubes are definitely associated with infection issues, but I’ve never heard of ports being a high risk.

Honestly I feel like they’re making too big of a deal over this and risking your life by waiting. I don’t understand how something isn’t sterile. Cleaning with Betadine etc

My brother’s was called Port-O-Cath. There is a Wikipedia page on ports but MSK is a leading Cancer Institute in New York City so I sent their page. Let me know what you think of the information

https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

K:

This is SOOOOOO reassuring! You are sent with signs from above! The last few nights passed in hours of tears because I’ve been so poorly with the peripheral shutdown and everyone is lost. No one knows which direction to take besides pray while seeking opinions.

I wanted a good amount of options to place forward on the table before meeting with prof so I don’t go all the way only to sit on the chair befuddled and tongue-tied.

KLF:

I think it’s best if you ask an American. No offence to all other countries but this is what we do. If you are upset about anything please ask me and tell me what it is and if I don’t know the answer or how to find the answer I’m gonna ask.

………. from patient worthy is a blessing to me and I will call her any time of day to ask a question for you. You need better quality of care because what you’re getting is literally screaming third world but clearly they have other options.

Honestly having a port is not a big deal. Being malnourished makes it even more important to have a port. All you need is skin

I hope the doctors do right by you and take care of this immediately. It seems as though time is of the essence and they’re playing with your life.

I love you. Ask me anything. You’re always in my thoughts and prayers 🙏💙

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Subhanallah! Without approaching KLF for an opinion she messaged from a place of pure concern, love and well wishing. Then all previous reservation regarding the port vanished and the answers we sought became crystal clear.

Finally someone who understood the seriousness of my situation.

Insha-Allah, a few weeks from now this decision although hard will turn into moments of great triumph and mercy after hard-fought difficulty.

While praying for definite guidance, I shall also conduct additional research…