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Sharon Rose
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Fifty Years on Nutrition Support: Yesterday, Today, and All of My Tomorrows

Click for press release about Sharon

Based on a presentation Sharon gave at the annual Oley Consumer/Clinician Conference in June 2018, in Memphis, Tennessee. Watch Sharon’s moving presentation on Oley's YouTube channel. At the end of the talk, the audience fittingly honored Sharon with a standing ovation.

 
Oley Co-founder, Dr. Lyn Howard with Sharon at the
2018 conference.

           In 1968, I had just graduated from nursing school. I had my first apartment, my first job, and things were wonderful. Then I developed abdominal pain. I ignored it until one day the pain came and didn’t go away. To make a long story short, blood clots had blocked the flow of blood to my small bowel. My small bowel became gangrenous, then ruptured, and, in the end, most of the bowel was removed surgically.

            I was young and healthy and I recovered from this surgery quite rapidly. I was home in nothing flat. The only instruction I was given on discharge was to eat a bland diet. I ate a peanut butter sandwich, which I loved. It, however, didn’t love me. I became horribly ill—nausea, vomiting, steatorrhea. After I’d purged everything out of my body, though, I’d feel good. Then I’d eat another peanut butter sandwich—or something else—and the cycle would begin again. I steadily lost weight and eventually ended up back in the hospital.

            This was a good-sized city hospital, but they didn’t know what to do with me. They gave me IVs—the usual sugar, water, and electrolytes—and they gave me an occasional bag of plasma, but that wasn’t enough. I was going downhill when one of the doctors told me a doctor at the university center who had some expertise in nutrition had agreed to take over my care. I moved to Cincinnati University Medical Center under the care of Dr. Richard Bozian. Dr. Bozian was, and still is, a wonderful human being. He is currently in his mid-nineties, but is still very active in the community.

            The first thing my new doctor did was absorption studies, to see how much I actually could absorb. It wasn’t much. Then he sat on my bed and talked to me about this new therapy called hyperalimentation (which is what total parenteral nutrition—TPN—was called in those days). From the very beginning he told me he’d never used TPN on anybody, but that he had read about it and there was a doctor in Texas who had successfully treated several patients with it. He felt it was what I needed. I agreed.

The Process

            My doctor explained that TPN had to be rapidly diluted in a large vein, so I got my first central line. It was placed at the bedside. They placed a large-bore needle into the subclavian vein. Through the center of that needle they threaded a little, thin, hard, plastic catheter. After the catheter was in the vein, they took the needle out, but they couldn’t get rid of it because it was all one piece. The needle was taped to my chest and the catheter stayed in the vein.

            The catheter never got soft or compliant with my body. It was rigid, and when you moved, like if you moved your arm, it would ride in and out of the skin. Consequently, it became infected rather easily. To add insult to injury, we didn’t have nice clear occlusive dressings like we do now. I just had gauze and tape. Thus I had my central line.

The TPN

            Making the TPN was a problem. My doctor couldn’t call the pharmacy and say he wanted it. Nobody knew what it was. Luckily, my doctor had been a pharmacist before he got his MD. He went down to the pharmacy and together, he and the pharmacist figured out how they were going to compound this solution that would give me everything I needed. In those days, the TPN came from the pharmacy in glass bottles.

            Luckily, my doctor was familiar with 0.2 micron filters, and he wanted a filter on my IV because he recognized that it had great potential for growing bacteria. However, you couldn’t infuse fluid through the filter without it being pumped, and there were no IV infusion pumps back then. That afternoon Dr. Bozian came into my room pushing a cart, and on it was a heavy metal box, about 10 to 12 inches square. It was a Harvard infusion pump. This pump was meant for laboratory use, not for patient care. It had no safety features, no bells and whistles. It had an on and off switch and a rheostat. You turned the dial up, the pump went faster; you turned it down, the pump went slower. That was the extent of it.

            The sterile tubing that went with the pump was not IV tubing, so I had to create something that would work. I would take sterile IV tubing, clean the outside with betadine, and cut it with sterile scissors. I would do the same thing with the pump tubing, then I’d take the two and tape them together. That was my IV tubing.

            I did not change my tubing every day. I kept using it until, well, usually it exploded. With no safety features, the pump pumped regardless. If something was blocked, like maybe the tubing was kinked or the filter was clogged with precipitate, it kept pumping anyway, and the pressure would get so great that the tubing would pop apart and there would be TPN in every corner of the room.

            The 0.2 micron filter was a lifesaver. Once it was wet, air could not go through it. There were no alarms on the pump, and if a bottle ran dry and I wasn’t paying attention, it would pump air. The filter prevented that air from being pumped into me. Pressure would build up behind the filter and there were times when I would look over and see the latex part of the tubing blowing up like a balloon before it would come apart.

Going Home on TPN

 

 At the end of the talk, the audience fittingly honored

Sharon with a standing ovation.

            This was basically my life for two years. I more or less lived at the university center. I did occasionally get out. If a line went bad, for example, I could go home for a few days. In those days, we still hoped that if I really, really pushed oral feedings—eating small amounts constantly of the appropriate stuff—that I maybe could make it orally. But it didn’t work and I would end up back in the hospital.

            After about two years, my doctor started talking about me going home and doing this. That set up a roar among his colleagues because they felt it was entirely too dangerous to let a patient go home with a central line. Thank goodness my doctor never gave up. He started brainstorming with some of the surgeons and they came up with the idea of creating AV fistulas for me to infuse my TPN through.

            An AV fistula is the same thing a dialysis patient has in their arm. They surgically connect the artery and the vein in the arm. Having the arterial flow pushed through this vein causes the vein to become engorged and have a very rapid blood flow. And that’s what they did.

I would put a little needle in my arm every night, and infuse my TPN during the night, then take the needle out in the morning and be free.

            I infused TPN using a fistula for six years, but it involved many, many, many surgeries, because although this vein had rapid blood flow, it still couldn’t really handle the TPN. Over time the vein would become irritated and clot off. They would go in and remove the clot and put in an artificial vein graft. They did this consistently, going up both arms until they could go no further.

  Finally, I got my first silastic catheter. It wasn’t cuffed; it was just a thin, soft, little catheter. They had to open my chest and managed to thread it through a small intercostal vein to get it up to where it should be. And it worked!

            Because it was a very soft catheter and because the route was so convoluted, at night I had to lay flat with my arms at my sides. I could not move my arms, or tilt my head, my shoulder, or even a hip. If I moved, the catheter would kink off. Believe it or not, I was kind of happy two years later when that catheter went bad.

            I did eventually get the type of catheter we are all familiar with today. I now have a Hickman. Getting a catheter in me can be challenging, as all the major vessels in my chest have clotted off. Throughout my body, small vessels have taken over the flow of the large veins that have been blocked off through the years. With our advances, however, it has become easier. Interventional radiologists can get a catheter into a turnip. They are wonderful. So life has gotten easier.

            We encountered a lot of problems through the early years. For example, it took me six years to get any lipids, and then I only got them as a research patient, because although lipids were being used in Europe with no problems, the FDA would not approve them. By the time I got lipids, my essential fatty acid levels were very low. I’d lost all my hair and the musoca in my mouth, nose, and vagina was like raw meat.

            Everything was “learn as you go.” When I was home doing it myself, I used to reuse my tubing. I’d pack it in formaldehyde, then rinse it out and use it again. In those early days, I didn’t get TPN already premixed. I mixed it from scratch, and I did it in my bathroom. Doesn’t that make you cringe?

A Blessed Life

            After I’d been on TPN about five years, my doctor told me Dr. Wretlind, a Swedish MD who was one of the pioneers in IV nutrition, was visiting from Europe and would like to meet me. Intralipid was his formula. Dr. Wretlind and I had a nice lunch together, during which he kept asking me rather everyday questions about what it was like living on TPN. I was surprised and said, “Certainly you know the answers, as one of the fathers of TPN.” He looked at me and said, “I’ve never talked to anybody who has lived on TPN. In Europe, we only use it as a temporary measure while people are recovering from surgery.”

            That was a real moment for me. I wondered, why am I so lucky? Why am I so blessed? I didn’t know the answer then, and I still don’t know the answer, but I’m thankful. I have led a full life. I was married, I have twin boys and five grandchildren, and I worked full-time as a critical care nurse.

            I have seen a lot of changes in the fifty years I have been on TPN and have seen many improvements. We improve so much every year. I want us all to have hope that it’s only going to get better.


updated: 10/11/18

more Calendar

2/13/2020
Delmar NY Tube Feeding/TPN Support Group for Patients & Caregivers

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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