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Tubing# 1 and #2: (b)(6) 2017: before the duopa can be started the j-peg tube must be in place.My surgery was done by (b)(6), md, a gastroenterologist at (b)(6) who places tubes in all dr.(b)(6) patients.He is an excellent surgeon and i trust him completely.The duopa staff gave us complete instructions on how to care for the system and made a home visit to make sure that all instructions were being done correctly.Only four months later the tube became separated and part of it fell out.The break that occurred in the connector where the peg and j tube come together was confirmed by an abdominal ct scan done in the (b)(6) hospital ed.No one in the ed was familiar with the duopa system so, i had to go back on the carbidopa/levodopa tablets by mouth until the tubing could be replaced.Dr.(b)(6) had never seen this happen before and didn't know what had happened.Dr.(b)(6) installed a second set of tubing.I do not know what discussion he had with abbvie after this.Tubing# 3: (b)(6) 2017: four months later the tubing was again replaced by dr.(b)(6) after it began to leak at the junction of the j/peg tubes at the plastic connector.Dr.(b)(6) gave the tubing set to the local duopa representative who threw it away and therefore it was not assessed for manufacturing defects.Tubing# 4: (b)(6) 2018 on (b)(6) we were staying in a hotel near (b)(6) airport in (b)(6) to be closer to the airport for an 8:00 am flight to a two week (b)(6) cruise including seven days on the open sea.When the tubing started leaking during the night time flushing we called dr.(b)(6) office for advice and were told to cancel the trip because we didn't want to be out to sea when a problem caused the pump to stop functioning.I was clearly heartbroken as i wasn't sure i would be capable of taking a trip in the future.Dr.(b)(6) replaced the tubing.Tubing: # 5 and # 6: again on (b)(6) 2018, the tubing was replaced because of a leak at the same location just below the plastic connector.The tubing placement procedure is done as an ambulatory procedure and i went home as usual.The next day i noticed my stomach was a little bit distended.In the early evening i had an acute attack of referred pain in my right shoulder that had not been injured and more abdominal distension.I went to (b)(6) ed.A ct of my abdomen was done by the ed physician who told me i had to be transferred immediately by ambulance to (b)(6) hospital for emergency surgery.They thought they saw a tear in my intestinal wall that might have been caused by the tubing insertion and it needed to be repaired quickly.When dr.(b)(6), the ed trauma surgeon at (b)(6) hospital, placed a scope in the intestine what he saw was a shadow and not a tear but dr.(b)(6) put in one suture to be on the safe side and he replaced the whole system of tubing.This resulted in a 3 day hospital stay on iv antibiotics.When i left i couldn't void so they put in an in-dwelling foley catheter.I thought best practice was intermittent catheterization.I was so uncomfortable that my urologist removed it and said he never would have put one in.This tubing stayed for eight months, tubing#7: on (b)(6) 2019, my abdomen was slightly distended and i began to feel like i wasn't getting my complete dose of carbidopa/levodopa.My husband commented that it recently had gotten extremely difficult to irrigate the tube each night.We decided to go to the (b)(6) ed where they performed a ct which indicated a thickening of the jejunal wall and said to contact my surgeon.On (b)(6), dr.(b)(6) removed the "j" tube, put me on iv antibiotics and i had to start taking the carbidopa/levodopa in tablet form.Dr.(b)(6) also stated that (b)(6) hospital would no longer use duopa brand tubing.On (b)(6), dr.(b)(6) checked the status of the jejunum and determined that it was not yet healed.On (b)(6) dr.(b)(6) determined that the jejunum had healed sufficiently to allow the tubing to be replaced.In the intervening time, at the request of dr.(b)(6) and dr.(b)(6), there had been a meeting of several physicians at (b)(6) hospital to determine the next steps.They had determined that all future such tubing insertions would be done by interventional radiology rather than gastroenterology and that (b)(6) hospital would no longer use the duopa brand tubing.He told me that i needed to meet with interventional radiology to plan for the tubing placement.I met with dr.(b)(6), the head of interventional radiology at (b)(6) hospital on (b)(6).He committed to scheduling the tubing placement on friday, (b)(6) because i was planning on leaving for vacation on (b)(6).In addition, the carbidopa/levodopa tablets i had been taking were not working very well and my condition was deteriorating (i was barely walking at that point).I had recovered a significant amount of mobility within two weeks of the new tubing installation.So that has been my life since (b)(6) 2017.Going through it we believed each intervention to be the last but putting it all together you can see the enormity of the problem.No pt should have to go through the process i did.I have been using duopa pump system since (b)(6) 2017.The tubing had to be replaced every 4-6 months because of leaks.In (b)(6) 2019, after a tubing replacement, i experienced severe abdominal pain.A catscan identified that the end of the tube in my intestine had become fused to the wall and caused irritation of the jejunum.Tubing was removed and i was back on tablets.Physicians at (b)(6) hosp decided to switch tubing brands and changed the process to interventional radiology from gastroenterology.I do not have the replaced duopa tubing.I have no idea if there ever was an assessment by a abbvie of mfg issues.For parkinsons disease infusion of liquid carbidopa.
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