- Meet Consumers/Patients
|Newsletters: Spotlight: Don Freeman|
Spotlight: Don Freeman
Don is a long time Oley member and volunteer. He served on Oley’s board of trustees and has been a Canadian regional representative for many years; his photographs of Oley conferences and travel tips have graced the pages of dozens of LifelineLetters. We thank Don for his dedication and are pleased to share his story.
At age 15 I was diagnosed with Crohn’s disease. Over the next eight years, I had numerous surgeries and resections leading to an ileostomy at 23; after which I had a 15 year remission. The reactivation in 1979 of my Crohn’s and a year of unsuccessful treatment lead to further surgery and short bowel syndrome.
For five months after this last bowel resection my life was hell — no more than sleeping and weakly lying about the house with continuous weight loss. Finally, realizing that my condition was only worsening given my limited bowel (65 cm.), I was re-hospitalized and put on TPN. My weight had gone from 150 lbs prior to the Crohn’s reoccurrence, to 70 lbs in a period of 18 months. Initially the TPN was to rest my bowel, but, after six months, it became evident that TPN would be required for life. This June I marked my 22nd anniversary on TPN.
My first year on TPN was not easy. Being the first person in Ottawa to go home on TPN, there was no hospital protocol — neither for self-administration nor funding. Therefore, I had to remain hospitalized. It took six months to stabilize me. Ultimately, it was 13 months before I was discharged. I may not have been even then, if not for a GI resident determined to discharge me before he moved to Toronto on a post-doctoral fellowship.
That year of hospitalization was difficult as I had a 4-year-old son. Fortunately, by the time I was stabilized in the Fall of 1981, I was allowed to be out of the hospital all day, returning each evening to infuse my TPN. A trying routine, but at least it gave me the full day with my son who was not yet in school. In fact, since I was not discharged until June 1982, I used my day passes, with some adjustment of infusion times to stay out for the evenings and coached my son’s T-ball team.
Sometimes positives come out of the worst situations. With the time I was at home before and after my hospitalization, and the day passes out of the hospital, I got to spend almost two years as my son’s primary caregiver. This created a good relationship and bond between us — stronger than normal because it was formed under such hardship. However, my year long institutionalization took a toll on my marriage, which ended halfway through my hospitalization. Besides the normal emotions from such an event, it raised issues that added to the problem of getting discharged home on TPN.
While still in hospital, I purchased a home in the same general area as my ex-wife, as we had agreed to raise our son in joint-custody. Now, I went about getting it setup, only to find that living on my own and being a single parent were strikes against being discharged.
Beyond the funding problem, now arose hospital resistance to discharging a TPN patient who had no backup at home and would be caring for a child. These conditions went against almost all hospitals homePEN protocols — even though I had effectively been on self-care in the hospital for nine months. I did all my solution mixing (you had to mix your own TPN back then), hook up, dressing changes, etc. I was doing everything on my own as I would at home except, in the hospital, where there are nurses on call; although never in nine months had I needed their assistance.
Fortunately, my GI-TPN physician is not one to let tradition get in the way of his patient’s welfare. So, with his approval, a resident arranged to discharge me the same day that he was leaving for Toronto to assume his post-doctoral position. A month’s supply of TPN solution was ordered from the hospital pharmacy. I was supplied with boxes and instructed to load up everything I would need for several months from the ward supply room. I was warned there could be a problem getting more supplies once the hospital realized I was no longer an internal patient. Two days later, after having the supplies transported to my new home, I was quietly discharged.
Sure enough, the resident was correct. Two months later, after my second TPN order, questions started to be raised. My doctor told me the hospital was raising concerns about funds to treat me outside the hospital and asked what I would do if he had to bring me back in to cover the therapy costs. My response was I would go to the local media (press, radio, TV) and show how out of the hospital I could lead a normal life, raise my son, work, pay taxes, contribute to my community, etc., while hospitalization would do nothing but tie up a bed others could use. This was at a time when Ontario hospitals were struggling with bed shortages. My doctor stated that he had no intention to re-admit me and just wanted to confirm my intent before he warned the hospital administration that forcing me back in would lead to a negative media campaign. That was 22 years ago and funding has never been brought up again. While during most of that period the hospital never had funding specifically for TPN, they always seemed to find the funds (see “Funding for TPN...”). Right at the start of my home TPN experience I learned the value of being pro-active — knowledgeable, forceful, and prepared to take control of my therapy.
A New Lease on Life
Within a month of my discharge in June 1982, I made my first trip on TPN, taking my son to Toronto and Canada’s MGM Wonderland for a week. My security blanket was the phone number of the resident who had treated me. Since then I have traveled throughout North America and Europe by car, train, and air.
With my last Crohn’s remission (22 years and counting) and strength from good HTPN nutrition, I have had a pretty normal life since 1982. Within four months of discharge, I returned to work as a Human Resource’s Officer with the Federal Government. However, having seen the value of life, I reduced my workweek to four days. Fridays were for rest and errands to fully enjoy free weekends with my son. During that first year, I took up curling, resumed skiing, including rejoining the Canadian Ski Patrol, and got active in community programs such as scouting and children’s sports.
Around 1983 I made the first attempt to establish the Canadian Parenteral and Enteral Nutrition Association (CPENA) and produced some newsletters. Through the aid of Travenol — a predecessor of Calea — the newsletters were distributed across Canada. This activity led to contact with HPEN consumers at Toronto General Hospital and participation in their association, which was a boon since I had not met any other HPEN consumers in Ottawa or elsewhere.
After a hiatus in the newsletter in the late 80s, with the aid of the Toronto HPEN association, PenLine was reincarnated. Unfortunately, after many years as a very vibrant group, the Toronto group ceased activities and, shortly after, a downturn in my health (line infections) resulted in another hiatus for the newsletter and CPENA. However, thanks to the support of Calea, in 2000 CPENA and PenLine were revitalized, and an expanded and updated website was developed.
In 1985 I learned of the Oley Foundation, and attended their and my first annual conference held in Saratoga Springs, NY. Since then I have attended all but two conferences, and have served as a trustee, a regional coordinator for Canada, a conference co-chair, and on conference and LifelineLetter Advisory committees.
My work with Oley has made me aware of the importance of contact with others who share my experiences. This is my motivation for CPENA; particularly, since our medical system presents many needs and concerns which are distinctly different from Oley’s mostly-American consumer environment.
I have been fortunate with my homeTPN. It was nine years before my first line infection and change. However, during the next five years, I had five line changes with the last two occurring within a six month period in 1995. Since then I have been on disability leave and find it necessary to infuse (3L+\night) over a longer period with more ups and downs. This fall I was approved for an early medical retirement.
I find, particularly since leaving the work world, it is important to keep active and involved with others for both my physical and mental health. I try to maintain an active regime both to avoid infections and TPN side-effects. Since loss of bone density can be a problem, I do weight training 3 times a week and walk extensively on the off days. While I no longer ski on a weekly basis (only occasionally), I continue to curl and coordinate a large curling league, travel, and keep active in my community and volunteer work. I have discovered that volunteering as a dog walker for the local humane society is an excellent way to ensure about an hour’s walk every day, and the unconditional appreciation of a dog is a great pick-me-up even on the most difficult of days.
As a person with an underlying diagnosis of Crohn’s Disease, TPN has been a therapy with a positive outcome for me; however, there are many with more difficult diagnoses such as pseudo-obstruction, etc. which are not so treatable by surgery or don’t have the possibility of lengthy remission like there is with Crohn’s. I consider myself to be fortunate that with TPN I have been able to raise my son (now 26 and working as a marketing coordinator), have a rewarding career, and participate fully in my community.
Funding for TPN in Canada
Some explanation of the Canadian Health Care System is required to explain the funding problem my hospital faced in 1981. The Federal government defines the care to which all Canadians are entitled and the provinces, which administer the system, must provide. Provincial governments fund hospitals in several ways Ñ annual capital grants to cover maintenance and, improvements; a set fee for each occupied bed/day; and annual grants for specific high-tech programs such as dialysis, HPEN, etc. The prime factor in all funding is that it is provided for in-hospital or outpatient (i.e. Dialysis) care — not home care.
Outside of the hospital, the Canadian health care system covers doctors’ fees, tests, etc. but not prescriptions (like TPN), except for seniors. This was the problem faced by the hospital when it came time to discharging me. As long as I was in the hospital, the TPN could be charged to the government; but once I went home the funding ceased.
My hospital was not the designated HPEN program hospital for my province (Ottawa), but, I insisted in staying with it because I had established a relationship with the HPEN team, and it’s closer location made checkups and acquiring supplies far easier. Ultimately, to be discharged, my TPN costs were absorbed within the hospital’s regular operating budget. This continued for 15 years until the Ontario government began merging hospitals and the costs for my TPN were merged into the General campus’s provincial special program grant.Reprinted with permission from PenLine, a newsletter of the Canadian Parenteral and Enteral Nutrition Association (CPENA). For more information about CPENA contact Don at firstname.lastname@example.org or visit www.cpena.ca.