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Long-term total parenteral nutrition (TPN)?

Blood Cancers & Disorders | Last Active: Feb 25 4:12pm | Replies (12)

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@bocajoes

Thank you for your reply and Links. They were very helpful. My Mother was on TPN due to a small and large intestine resection for roughly 120 days. The surgeries went fine, but she passed away on 7/11/2018 due to Massive Hospital Induced Complications, mostly which were TPN Complications. There was Zero concern about the Massive Anemia, Pre-Albumin and Albumin as well as improper Oxygen monitoring. I did not know until after she passed that Severe Anemia makes Pulse Oximetry extremely unreliable, although weeks before she passed I questioned why every time her O2 was reduced, her Blood HCO2 soared. Even with having the surgeries, there was no concern about her Anemia which required at least 3 Blood Transfusions totally unrelated to surgery..

Her 1st hospital stay with TPN was from 3/07/18 until 4/15/18. She was then in a nursing facility until 4/30 when she was returned by Paramedics to an affiliate hospital, with an Infection, Blocked Central Line and Multiple Blood Clots in her Lungs and Legs. We were told she had an Ultrasound before discharge to check for this, but in fact she did not. She then suffered a massive hospital induced Oxygen deprivation on Mothers Day which sent her to ICU. She was discharged again on 5/27/18.

She was once again returned by EMS again on 5/31. She had a Blood Sugar too high to measure, and once at ER her Troponin levels were 1000 times above the Alert Level. It was actually determined the day before the Hospitalist "Contract" Dr. had discharged her with a TPN Rx Formulation that she had not had for 6 weeks and Never had while at that hospital.

I then spent a few days combing the medical records available to me from top to bottom, everything. I see that has been highly Anemic with nothing done to look at why or how to treat it. It should be noted that for years the running joke with her PCP who was her early 40's that she wished her Labs would look 1/2 as good my Mom's when she got to her age. I started requesting a Hematology consult and was refused every single day for over 2 weeks. Finally at wits end, I begged a Supervisor to ask again, and was denied. I asked her to reconsider on her drive to another hospital. 90 minutes later, a Hematologist showed up, intently and diligently looked at everything I offered to him. He agreed and felt it was serious enough to order a Bone Marrow Biopsy the next day. Several days later, the Contract dr.'s came and said the Bone Marrow was normal and she was ready for discharge. I doubted this and called the hematologist who was at another hospital that day. He said absolutely not the result were not back, only an initial check for Cancer. They continued to push for discharge. The results came back finally showing "No Stainable or Traceable Iron in her Bone Marrow....Still, nothing Substantive was done to correct this.5 days before she passed, a story was cooked up that changed 3 times,I was not allowed in the hospital to see her again until she was in Code, and called to the Hospital. The most Ironic thing that days, was that a Dr. who we had requested to consult on her case was leading the CODE event. For almost 6 weeks we had called his office at the hospital, emailed, and made verbal requests at meetings, all of which were denied. The only thing he said as he apologized for our loss, was that his office received all of the communications, and that that decision was made well above his pay grade by Hospital Administration.

There are numerous other facts which still give me nightmares to this day.There are protocols that were ignored that would be followed even at a 3rd world hospital regarding fluid overload and BMP management. She at one point gained 26 pounds in 6 days with no one noticing or caring other than our family. A Dr. had totally stopped her Lasix. There were decisions made by Dr.'s that even a hospital TPN employee cautioned even a 1st year resident would not make. I still have her texts and voicemails, where she acknowledged she was given the wrong TPN on her 5/27/18 discharge. I commented that it seems like they are trying to kill her by drowning her. Her direct reply was that it certainly seems that way. These Dr.'s had almost no understanding of TPN Nutrition... Dr. Stevie Wonder could see these problems... Again this was at a "World Class Hospital", Not Mayo though.

My point in posting is to Alert others that Iron monitoring is critical and a sever deficiency with Zero input is ALWAYS Life Ending if not corrected

Apologies for my rant, but if there is interest at some point in the future I can post numerous links on conditions surrounding her problem such as Pulse Oximetry under severe anemia, importance of Pre-Albumin and Albumin, especially for someone on TPN and a host of issues...

Right now I am facing a Statute of Limitations on her death. Sadly, the same lack of knowledge on TPN exists in the Legal world along with her age, despite the fact that she was medically drowned...

PS: she was not a vegetable, and wanted to live, and even stayed up to almost midnight on 7/04/18 watching the fireworks with us on tv at the hospital.... .

Thank You For Your Attention.

Respectfully,

bocajoes

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Replies to "Thank you for your reply and Links. They were very helpful. My Mother was on TPN..."

@bocajoes, I appreciate your sharing your mom's story with the intent to educate other patients and caregivers. Searching the internet for information about iron and parenteral nutrition, I can attest to your statement that there is limited information available, especially for the lay person.

I agree with @grandpabob, your mom knows that you did everything you could. I'm sure you learned more about TPN than ever anticipated having to know and I admire your tenacity both in getting information and advocating for your mom. Are you able to advocate for yourself with this same thoroughness and diligence? I find it easier to advocate for others than myself, especially when ill.