As the Mayo Clinic article states: "Long-term complications may include too much or too little of trace elements, such as iron or zinc, and the development of liver disease. Careful monitoring of your parenteral nutrition formula can help prevent or treat these complications."
May I ask why you or someone you know is receiving parenteral nutrition? How long and for what condition?
Welcome to Mayo Clinic Connect, I see this is your first post on Mayo Clinic Connect.
Mayo Clinic Connect is an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.
As I am not a clinician, below is a link to some information I found on the internet that may be helpful. https://pubmed.ncbi.nlm.nih.gov/25972429/
To get an answer that is specific to your particular situation, I would suggest you ask this of your Doctor.
I am curious, how long is the patient expected to be on these particular fluids?
Do you have a Physician you can direct your question to?
As the Mayo Clinic article states: "Long-term complications may include too much or too little of trace elements, such as iron or zinc, and the development of liver disease. Careful monitoring of your parenteral nutrition formula can help prevent or treat these complications."
May I ask why you or someone you know is receiving parenteral nutrition? How long and for what condition?
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.... .
Welcome to Mayo Clinic Connect, I see this is your first post on Mayo Clinic Connect.
Mayo Clinic Connect is an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.
As I am not a clinician, below is a link to some information I found on the internet that may be helpful. https://pubmed.ncbi.nlm.nih.gov/25972429/
To get an answer that is specific to your particular situation, I would suggest you ask this of your Doctor.
I am curious, how long is the patient expected to be on these particular fluids?
Do you have a Physician you can direct your question to?
I cannot imagine some of the frustration you went through in dealing with your mothers care. I am sure it must have been extremely difficult when it seemed not all actions were being taken.
I do hope, at some point you can feel that you did your best to get her the health care you felt she deserved.
As a parent myself, I would take comfort in knowing that my child stood up for me and took my best interests to heart, which it appears you very much did.
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.... .
@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.
Is anyone else on TPN as a result of digestive issues? My husband is struggling with how to accept not being able to eat solid (or even much liquid) nutrition - now gets that via IV from a bag since a feeding tube was not possible either. Looking for ideas or ways to cope, thank you.
As a patient going through the same analysis - "do I get a TPN due to digestive failures", how is life now that you are a year and a half into the TPN journey as compared to before TPN?
Connect
Connect
Like
Helpful
Hug
Hi @bocajoes, welcome to Mayo Clinic Connect. Here is some useful information about total parenteral nutrition (TPN).
- Home parenteral nutrition https://www.mayoclinic.org/tests-procedures/total-parenteral-nutrition/about/pac-20385081
- Iron and Parenteral Nutrition https://www.gastrojournal.org/article/S0016-5085(09)01451-6/fulltext
- Improving Outcomes with Parenteral Nutrition https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3277197/
As the Mayo Clinic article states: "Long-term complications may include too much or too little of trace elements, such as iron or zinc, and the development of liver disease. Careful monitoring of your parenteral nutrition formula can help prevent or treat these complications."
May I ask why you or someone you know is receiving parenteral nutrition? How long and for what condition?
-
Like -
Helpful -
Hug
2 ReactionsHello @bocajoes
Welcome to Mayo Clinic Connect, I see this is your first post on Mayo Clinic Connect.
Mayo Clinic Connect is an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.
As I am not a clinician, below is a link to some information I found on the internet that may be helpful.
https://pubmed.ncbi.nlm.nih.gov/25972429/
To get an answer that is specific to your particular situation, I would suggest you ask this of your Doctor.
I am curious, how long is the patient expected to be on these particular fluids?
Do you have a Physician you can direct your question to?
-
Like -
Helpful -
Hug
3 ReactionsThank 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
Thanks for your reply and link. Answers to your ?'s in reply to Colleen.
Hello @bocajoes
Thank you for the reply.
I cannot imagine some of the frustration you went through in dealing with your mothers care. I am sure it must have been extremely difficult when it seemed not all actions were being taken.
I do hope, at some point you can feel that you did your best to get her the health care you felt she deserved.
As a parent myself, I would take comfort in knowing that my child stood up for me and took my best interests to heart, which it appears you very much did.
Do take care.
-
Like -
Helpful -
Hug
3 Reactions@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.
-
Like -
Helpful -
Hug
1 ReactionIs anyone else on TPN as a result of digestive issues? My husband is struggling with how to accept not being able to eat solid (or even much liquid) nutrition - now gets that via IV from a bag since a feeding tube was not possible either. Looking for ideas or ways to cope, thank you.
-
Like -
Helpful -
Hug
1 ReactionHi @buckslayer, I moved your post about your husband to this discussion so that you can connect with other people that are on TPN.
- TPN IV Nutrition?
https://connect.mayoclinic.org/discussion/tpn-iv-nutrition/?pg=1#comment-727343
How long has he been on the IV?
-
Like -
Helpful -
Hug
1 Reactionone week in the hospital and almost a week at home
As a patient going through the same analysis - "do I get a TPN due to digestive failures", how is life now that you are a year and a half into the TPN journey as compared to before TPN?