Deborah's Home Parenteral Nutrition (HPN) Story

Reason for HPN

Eight years ago, I was fit and extremely healthy, completing my PhD, and loving my career as a palliative care nurse lecturer. My life changed dramatically when a respiratory viral infection triggered a severe form of myalgic encephalomyelitis (ME), which is a complex, multi-system, chronic medical condition. My array of new debilitating symptoms included severe intractable nausea, vomiting, pain and abdominal distension after all oral intake resulting in 12kg rapid weight loss. I was diagnosed with gastroparesis and spent months in hospital on nasogastric feeds before an electronic gastric pacemaker was inserted to aid gut motility and help ease my symptoms.

 

Length of time you were not well prior to starting HPN

Despite the gastric pacemaker, I soon required home enteral nutrition via a jejunostomy tube. Over the following 2 years, jejunostomy feeds became increasingly unbearable due to worsening gastroparesis and chronic intestinal pseudo-obstruction (CIPO). As the unrelenting symptoms and weight loss increased, I relied more on intermittent hospital admission for TPN (total parenteral nutrition) ‘pitstops’. A partial gastrectomy and intolerable cancer treatment for a rare stomach tumour complicated my gut and health issues during this time.

After 3 years of suffering with severe gastrointestinal symptoms and frequent emergency hospital admissions, my surgical team and I agreed it was time to start HPN. A review by a specialist intestinal failure consultant fully supported this major decision. She confirmed that my HPN would be lifelong, which was difficult but not surprising to hear.

 

Experience to date with using HPN  

I became nutritionally stable, gained some weight, and I had more spells of ‘good enough days’ than ever before. I am now four years on HPN, and my quality of life has improved significantly. Every day I am grateful for this life sustaining, and at times lifesaving, treatment. HPN means I have the luxury to eat for pleasure rather than necessity. I adore the tastes, smell and look of food. Although I still can’t keep oral food down, the social aspect of sitting around the table with family and friends means eating small amounts is often well worth the payback. My HPN treatment has been positively life changing, but it is not risk-free. Since starting HPN, I’ve had numerous emergency hospital admissions for severe line related infections and serious complications, despite being vigilant in my HPN management. My underlying conditions increase these risks.

Having however undergone several surgeries with prolonged complications, and having survived sepsis thanks to timely ICU intervention, I’m consoled and humbled by how my body takes care of itself over time. The nutritional benefits of HPN have contributed greatly to enhancing my healing process time after time.

 

There is a finite number of access points to the body’s large veins for the administration of total parenteral nutrition. Since commencing TPN, I have had countless PICC (peripherally inserted central catheter) lines inserted in my arms. Now this route is no longer accessible due to scarring and narrowing of my veins. I am deeply appreciative to be under the care of an amazing surgeon who has managed to salvage my Hickman lines in my chest on many occasions in the past 4 years.

My 4th Hickman has been in for a year now, and I trust that this precious line will continue to be patent and infection free for some time to come.

Describe your daily and weekly routine, including weekly hobbies and activities

I sadly had to retire from nursing due to ill health 6 years ago, as my underlying conditions means I function daily at about 20% of my pre-illness level. Consequently, I am mostly housebound, have cognitive difficulties, depend on a wheelchair and aids for mobility, and rely on my family for all household chores, shopping etc. I am however extremely lucky to have HPN, which I believe enhances my quality of life hugely. I am in my element just being in my lovely home, treasuring each changing season, and spending cherished time with family and friends. When I’m able, getting out briefly in a local park or even just sitting in our garden is uplifting. On really good days, I love to help cook a nice meal to share. Nothing beats sitting around the table chatting together. A family holiday is very important to me, and a reason why I initially resisted HPN. I thought it wouldn’t be possible again. How wrong I was. We’ve got away for a chilled family holiday every year since I started HPN.

Travelling for a week with at least 30kg of HPN supplies takes a lot of planning and is logistically challenging, but the experience and memories are worth it. This summer, Mavis, our gorgeous 3-month-old puppy is keeping me entertained and busy!

What is the best thing about the homecare service?

The Fresenius Kabi (FK) homecare service is excellent for providing all the ancillary supplies I need to support safe HPN administration and care. The staff are very flexible and understanding and have been wonderful in helping organise my travel requirements each year. I truly appreciate the educational support and expert training my daughter and I received from the FK Homecare nurses. Having a family member also trained offers great security for the days I’m too ill to do it myself. It’s also reassuring that I can call a FK nurse to answer HPN questions that arise.

 

The gentlemen who deliver my weekly HPN bags are also fantastic. The compassion and care they show is commendable. Even my dogs love to see them arriving!

 

What advice would you give to a family starting HPN ?

Research reputable clinical sources and ask healthcare professionals about the pros and cons, risks and complications, and practicalities of living with HPN. Your dietitian is a valuable source of support and knowledge. Try not to compare yourself and let your life be governed by others on social media. Everyone’s experience of managing HPN is different, and we are all learning every day. Trust that you know your body best and seek urgent medical advice if something doesn’t feel right. The importance of protecting your central line cannot be underestimated. It is essential healthcare professionals in the emergency department or on the hospital ward adhere fully to sterile techniques when approaching your line to avoid infections that can cause blockages and sepsis. If you are in hospital, consider asking your consultant or dietitian if you or a trained family member can administer your TPN.

This will ensure the highest standards that you value at home are continued in hospital. I recall the specialist IF (Intestinal Failure) consultant’s stark warning when we were discussing TPN liquid: “the bugs love it”. So please don’t be afraid to inform any healthcare staff if you have even a tiny concern about their approach to your line.

I encourage patients starting HPN and their family members to become their own master expert on HPN

 

Research reputable clinical sources and ask healthcare professionals about the pros and cons, risks and complications, and practicalities of living with HPN. Your dietitian is a valuable source of support and knowledge. Try not to compare yourself and let your life be governed by others on social media. Everyone’s experience of managing HPN is different, and we are all learning every day. Trust that you know your body best and seek urgent medical advice if something doesn’t feel right. The importance of protecting your central line cannot be underestimated. It is essential healthcare professionals in the emergency department or on the hospital ward adhere fully to sterile techniques when approaching your line to avoid infections that can cause blockages and sepsis. If you are in hospital, consider asking your consultant or dietitian if you or a trained family member can administer your TPN. This will ensure the highest standards that you value at home are continued in hospital. I recall the specialist IF consultant’s stark warning when we were discussing TPN liquid: “the bugs love it”. So please don’t be afraid to inform any healthcare staff if you have even a tiny concern about their approach to your line.

Remember your central line is your lifeline.

Please be kind and gentle with yourself. The early weeks and months starting HPN can be challenging. It takes time and patience to feel secure and competent with the precise sterile techniques required to safely administer HPN independently. You’ll get there. Taking joy in the joy of others offers a completely different perspective to living with HPN. Seeing or hearing about your loved ones enjoying a nice meal or devouring a chocolate cake is almost as good as tasting and digesting it!

There are so many life-giving gains with HPN, that the hinderances become miniscule. Working together with your healthcare professionals, homecare service provider, and with the love and support of family and friends; you’ll get to live the life you want. So, live in the gratitude and gladness in being alive now thanks to the gift of HPN. Breathe it in and enjoy another moment of life.

1. The Journal. March 2018. Available at https://www.thejournal.ie/intestinal-failure-ireland-3889773-Mar2018/ Accessed July 2024.

 

This article was instigated, created and funded by Fresenius Kabi.

Job code: IE-HPN-2400012

Date of preparation: October 2024