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Forum Code of Conduct

Guidelines and Code of Conduct


The purpose of Transplant Unwrapped is to educate the community about intestinal and multivisceral transplant: educate to help improve the lives of our transplant members and their families; educate the community-at-large, to foster awareness and a better understanding of intestinal and multivisceral transplant; and educate to encourage compassionate care and treatment of intestinal and multivisceral transplant patients.


Transplant Unwrapped has developed a Code of Conduct for all Forum Members. By joining the Forum and adopting the Code of Conduct, members agree to represent themselves, the Transplant Unwrapped organization, and intestinal and multivisceral transplant in a positive and constructive manner.


Code of Conduct


I agree to support other transplant patients and caregivers via our private Internet Forum.

I agree to be respectful of all users at all times. This means please use etiquette and politeness. Treat people with kindness and gentleness.


I agree to promote positive awareness, education, care, and support for the intestinal and multivisceral transplant community.


I agree to refrain from using the board to send abusive or harassing private messages or emails.


I agree to remember that these forums are read by people of all ages, so we strive to maintain postings

appropriate to everyone.


I agree to report to a moderator or administrator privately if you have found a post that you feel is inappropriate or that violates the forum Code of Conduct. While the administrators and moderators of this forum will attempt to remove or edit any objectionable material as quickly as possible, it is impossible to review every message, so we appreciate your assistance. Please do not start a debate in the open forum.


I agree to be aware of negativity and misinformation that can exist on other social websites, groups, and forums and to avoid promoting, participating in, associating with, or adopting such harmful attitudes myself.


I agree to provide Transplant Unwrapped with only accurate information regarding myself, my identity, and my activities.


I agree to abide by the policies and guidelines of the forum that may from time to time be newly adopted by the Transplant Unwrapped Board of Directors.


I agree to not speak against other Ambassadors, the organization, the moderators, or the leadership.

I agree to graciously and respectfully discourage others who may engage in negative gossip because I recognize that this issue alone can jeopardize the integrity on which the organization is established and fosters an eroding effect on the overall health of the entire organization.


I ACCEPT my participation as a forum member as a privilege and not a right.


I UNDERSTAND that the Transplant Unwrapped organization reserves the right to remove a member if in the judgment of the Board of Directors such action is deemed necessary to safeguard standards of behavior, attitude, and safety.


I UNDERSTAND that the electronic submission of my application is my acceptance of the Code of Conduct and the Participation and Posting Guidelines in their entirety and completes a contract between me and Transplant Unwrapped, Inc. which is a prerequisite for ongoing enrollment and my continued association.


I UNDERSTAND that as a participant of the forum, I am a representative of intestinal and multivisceral transplant and the Transplant Unwrapped organization and am therefore obligated to present myself, these transplants, and this organization in a positive, healthy, and constructive manner.


All members admitted to the forum must agree to uphold this Code of Conduct and the policies of the Transplant Unwrapped organization. These policies are not implemented to be self-serving or controlling in nature, but rather they exist to better serve the members and to ensure that participation is a fulfilling experience.


Transplant Unwrapped’s Forum Participation and Posting Guidelines:

In order to be a forum member, we ask that everyone remain active and engaged in the community. Upon acceptance into the forum, we ask that you introduce yourself to other members of the community in the “introductions” section within three months of membership. An example introduction is provided on the forum.


In General,


 Transplant Unwrapped reserves the right to remove messages, block users after a warning, and update policy without notice. The following posts and/or replies are subject to removal and the responsible user(s) being blocked from the discussion board: inflammatory; derogatory; controversial; religious; political; off-topic; profanity; posting another user's e-mail address (without that person's permission);  questions/debate about board policy/management; personal attacks/harassment; boycott campaigns.


 Commercial posting is strictly prohibited. This means that messages promoting a product or service must not be posted by, or on behalf of, anyone with any sort of financial interest in that product or service.


 Solicitations to participate in market research by commercial enterprises is prohibited unless approved by Transplant Unwrapped and disclosed to forum members.


 Solicitations to participate in research studies by non-profit entities must also be cleared by the Transplant Unwrapped Management Board of Directors before being posted on this board.


 Copyrighted material must not be included in postings, but you may provide a link to the original source.


 This is a family board. Any language or pictures that would not be suitable for a family audience are prohibited. You are not to post any abusive, obscene, vulgar, sexually-oriented material, or anything that may violate any applicable rules. This includes the posting of material that may be generally offensive to, or "flaming" of, users or management of the board. Doing so may lead to your being permanently banned.


 The webmaster, administrators, and moderators of this forum have the right to remove, edit, move or close any topic at any time should they see fit, and without asking the permission of the original poster, neither do they have to give a reason for editing or closing the post/thread/topic in question.


 There is to be no open forum flaming of another member. No-one will post demeaning comments to one another on the open forum or they will be removed.


 The decisions of a post either staying, being deleted, or edited are those of the moderators/administrators.


 Topics started by one person should be kept on track; if you have something that deviates from the main topic, please start another topic.


 This board is here to serve a purpose, namely, support. Support is a broad word and sometimes crosses some of the specific rules stated. Determinations whether posts that appear to skirt some of the rules may stay on the board are those of the moderators/administrators. If you feel something is inappropriate, please contact the appropriate people instead of posting your objections on open forum.

o If you find that a person is posting inaccurate information or inappropriate information, please ‘flag’ the comment directly on the forum as well as contact a moderator immediately so the post can be taken down if warranted- we want to make the forum a pleasant place for everyone to share information and provide support.


o There is an automatic built-in system on the forum that will automatically take-down a post if it is ‘flagged’ a certain number of times by forum members, so even if one person has already flagged a comment, if you also think it is inappropriate, please flag it yourself so the system knows to bring attention to the item, as we cannot see every comment at every moment.


 If you are ever in doubt of a question or seeking true medical advice, please refer to your transplant center or proceed to your nearest emergency room- This forum and/or website is not intended to be used as medical advice or to diagnose, treat, cure, or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for a health professional's advice. Transplant Unwrapped does not accept any liability for any injury, loss, or damage incurred by use of or reliance on the information presented.


 Must be 18 years or older. If between the ages of 13-17 years, you must obtain parent or guardian approval to join the forum. No one under the age of 13 is allowed access to the forum for safety and privacy reasons. Please ask a parent or guardian to join the forum on your behalf.


By checking the box online you agree to the above rules, regulations, and guidelines. By checking the box you also certify you are 18 years of age or older. If you are between the ages of 13-17 years of age, you are verifying you have parent or guardian approval to join Transplant Unwrapped’s forum and agree to the above rules, regulations, and guidelines. Anyone under the age of 13 should not request forum membership, as access to the forum is strictly prohibited. Upon review of this document and your application, a forum membership will be granted, if appropriate.


I agree to the above rules, regulations, and guidelines set forth by Transplant Unwrapped. If under any circumstance I breach these conditions, I understand my forum membership can be revoked. (you will click yes to this on the form online when you submit your application).


© 2020 Transplant Unwrapped. All rights reserved.

More

Citations for Assessment of Intestinal Failure

  1. Bharadwaj S, Tandon P, Gohel TD, et al. Current status of intestinal and multivisceral transplantation. Gastroenterology Report. 2017;5(1):20-28. doi:10.1093/gastro/gow045.

  2. Abu-Elmagd K, Bond G. Gut failure and abdominal visceral transplantation. Proceedings of the Nutrition Society. 2003;62(3):727-737. doi:10.1079/pns2003288.

  3. Langnas AN, Goulet O, Quigley EMM, Tappenden KA. Intestinal Failure Diagnosis, Management, and Transplantation. Malden, MA: Blackwell; 2008.

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Transplant Unwrapped's Terms of Use and Privacy Policy

Transplant Unwrapped’s Privacy Policy

The purpose of Transplant Unwrapped’s website is to provide information about the organization and about intestinal and multivisceral transplantation to patients, caregivers, family members, healthcare professionals, and the general public.


By using this site, You agree to be bound by all of the Terms and Conditions and Privacy Policy set forth below. If You do not accept these Terms and Conditions and Privacy Policy, please do not use this site. Transplant Unwrapped may, at its sole discretion, revise these Terms and Conditions and Privacy Policy at any time; therefore, You should visit this page periodically to review the Terms and Conditions.


What information do we collect?


You may browse our website without identifying yourself or providing any personally identifiable information. When you interact with us through your computer, however, we do record certain non-identifying site-usage data, such as your number of visits to our website pages, type of internet browser you are using, domain name of the website you clicked on to come to our website, and/or IP address and server owned by your Internal Service Provider.


If you elect to provide us with individually identifying information, this may include name, email address, phone number, payment details, other demographic information, and health data. Transplant Unwrapped keeps all names, addresses, and all other personal information supplied by visitors to our website strictly confidential unless express consent is given otherwise.


How is this information used?


This data is used to store and process the information to better understand user needs and how we can improve our website; contact you directly including to deliver requested e-books and other educational materials; and to track usage behavior.


We may use this information to communicate with you by email, SMS (text) message, or postal mail from time to time. We may receive confirmation via HTML code when you open an email from us, which helps us measure our reach and ensure reduce or eliminate duplicate e-mails. If you no longer wish to receive e-mails from us, please unsubscribe or contact us at info@transplantunwrapped.org.


What are cookies?

Some parts of our website may also use 'cookies,' which are alphanumeric identifiers that are transferred to your computer through your web browser. You may configure your browser to accept all cookies, reject all cookies, or notify you when a cookie is sent. However, if cookies are rejected, some pages on our website may not function properly. Please view our cookie policy below.


Cookies Policy


When you interact with us, we use technological tools such as "Cookies," "Log Data," and other identifiers to receive and store certain types of information whenever you interact with our site. Examples include your IP address, unique device identifiers, session ids, computer or mobile device make and model, operating system, browser program and version, pages you requested and history. We may use this data to, among other things, tailor, customize and enhance services as well as your experience and to help diagnose, operate and administer our site. We also use cookies to save you time while using the Websites, remind us who you are, and track and target user interests in order to provide a customized experience. Cookies allow us to collect Non-Personally Identifiable Information from you, like which pages and applications you visited and what links you clicked on. Use of this information helps us to create a more user-friendly experience for all visitors. You may configure your browser to accept all cookies, reject all cookies, or notify you when a cookie is sent. However, if cookies are rejected, some pages on our website may not function properly.


Our site may automatically collect usage information, such as the numbers and frequency of visitors to our website and their components. This data is only used in the aggregate, that is, as a statistical measure, and not in a manner that would identify you personally. We use this information to design and improve our sites and may provide this information to partners so they can understand how often users use areas of our websites.

When you visit our website, we may automatically collect certain information through the use of electronic tools like Cookies and Web beacons or Pixel tags. We use Non-Personally Identifiable Information to troubleshoot, administer our site, analyze trends, gather demographic and engagement information, enhance and customize our site, measure the effectiveness of our links, content and programming, comply with applicable law, and cooperate with law enforcement activities. We may also share this information with our authorized third-party service providers.


To opt out, you may visit the settings in the browser you are using

To opt out of being tracked by Google Analytics across all websites, visit this link: http://tools.google.com/dlpage/gaoptout.


Additionally, Transplant Unwrapped may include a third-party cookie from Google in order to use Google Analytics to monitor site statistics. Please note that Google and its wholly owned subsidiaries may retain and use, subject to the terms of its Privacy Policy (located at http://www.google.com/privacy.html, or such other URL as Google may provide from time to time), information collected in Your use of the Service.

Any automatically collected information may be maintained indefinitely and used for our internal business and marketing purposes, such as assessing traffic patterns and usage of various features on the site but will not be sold or otherwise disclosed to third parties for any purposes.


Please note: Children under the age of 13 should receive parental consent prior to disclosing any personal information and utilizing internet websites.


What security is provided for the information?

Our organization is hosted on the Wix.com platform. Wix.com provides us with the online platform that allows us to share our educational content with you. Your data may be stored through Wix.com’s data storage, databases and the general Wix.com applications. They store your data on secure servers behind a firewall. All direct payment gateways offered by Wix.com and used by our organization adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, MasterCard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of credit card information by our store and its service providers. If you wish to have your data that was submitted to Transplant Unwrapped through the website edited or removed, or if you have concerns about your data, you can contact info@transplantunwrapped.org.


Our website also has a Secure Socket Layer (SSL) security certificate for website protection.


Transplant Unwrapped maintains the right to modify this privacy policy at any time by electronic notice posted on our website. Your continued use of our website after the date that such notice is posted will be deemed to be your agreement to the changed terms.


Terms of Use and Information Policy


Disclaimer on the Information Provided on the Transplant Unwrapped Website

All articles, stories, videos, infographs, handouts, e-books, downloads, messages, and all other forms of content that appear in our website are provided for general information purposes only. They do not represent individual medical advice, counsel concerning individual treatments or medical care, referrals to healthcare professionals, or any other recommendations. You should not rely on any information on these pages to replace consultations with your doctor and other qualified healthcare professionals regarding your individual health needs. Statements or opinions expressed by physicians and other independent authors reflect the views of each such individual and do not necessarily reflect the views or any official policy of Transplant Unwrapped.


Transplant Unwrapped makes every effort to provide accurate and up-to-date information. However, Transplant Unwrapped expressly disclaims all responsibility and liability arising from your use of or reliance on this website or for the information contained herein as a reference source, and for any advice or other guidance or information provided by any health care provider contributing to this site.


Links Outbound

Transplant Unwrapped’s website also contains links to other Internet sites. Transplant Unwrapped does not necessarily endorse the views expressed in the Internet sites to which it provides links, nor is the organization responsible for the information they contain. The content of these linked sites are the sole responsibility of such sites and their contributing authors. We do not intend links to other sites to be referrals or endorsements of the linked entities, but rather provides such links for convenience only.


Transplant Unwrapped’s website also contains links to videos and other forms of information on third party sites. Transplant Unwrapped does not necessarily endorse the views expressed in the videos or sites to which it provides links, nor is the organization responsible for the information they contain. The content of these linked videos and sites are the sole responsibility of such sites and their contributing authors. We do not intend links to other sites to be referrals or endorsements of the linked entities, but rather provides such links for convenience only.


Links Inbound

Transplant Unwrapped grants you a limited, non-exclusive, revocable, non-assignable, personal, and non-transferable license to create hyperlinks to the Site under the following conditions: a) the links and the content on your website must not suggest any affiliation with or endorsement by Transplant Unwrapped or cause any other confusion regarding your relationship to Transplant Unwrapped or their online services; b) the link opens to the full version of applicable web page, and each page within the Site is displayed in full (including all trademarks and branding), unaltered, and without any accompanying frame, border, margin, design, branding, trademark, advertising, or promotional materials not originally displayed on the page within the Site; and c) the links and content on your website do not portray Transplant Unwrapped Representatives in a false, misleading, derogatory, or otherwise offensive matter, and do not contain content that is unlawful, offensive, obscene, threatening, harassing, or that violates this Agreement or any right of any third party or is otherwise objectionable to Transplant Unwrapped.


Transplant Unwrapped reserves the right to suspend, withdraw permission, or prohibit linking to its web pages and/or online services for any reason, in its sole discretion, without advance notice or any liability to any kind to you or any third party.  Unless Transplant Unwrapped enters into a specific written agreement with you, you may not use any of Transplant Unwrapped’s names, logos, designs, slogans, trademarks, or service marks in or with your links, except that you may link to the Site using the plain text name of the Site.


Acceptable Use

You agree to use Transplant Unwrapped only for its intended purpose and in an authorized manner. You must use Transplant Unwrapped in compliance with all privacy, data protection, intellectual property, and other applicable laws. The following uses of Transplant Unwrapped are prohibited. You may not:

  1. attempt to interfere with, harm, reverse engineer, steal from, or gain unauthorized access to Transplant Unwrapped, user accounts, or the technology and equipment supporting Transplant Unwrapped;

  2. frame or link to Transplant Unwrapped without permission;

  3. use data mining, robots, or other data gathering devices on or through Transplant Unwrapped, unless specifically allowed by these Terms;

  4. impersonate another person, or misrepresent your affiliation with a person or entity;

  5. sell, transfer, or assign any of your rights to use Transplant Unwrapped to a third party without express written consent from Transplant Unwrapped; or

  6. use Transplant Unwrapped in an illegal way or to commit an illegal act in relation to Transplant Unwrapped.

User Generated Content Policy

When you transmit, upload, post, email or otherwise make available data, text, software, music, sound, photographs, graphics, images, videos, messages, or other materials on Transplant Unwrapped’s website, forum, or social media outlets, you give Transplant Unwrapped the irrevocable right to reproduce, distribute, publish, display, edit, modify, create derivative works from, and otherwise use your submission for any purpose in any form and on any media. You also agree that you will not:

  1. Post material that infringes on the rights of any third party, including intellectual property, privacy or publicity rights.

  2. Post material that is unlawful, obscene, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by Transplant Unwrapped in its sole discretion.

  3. Post advertisements or solicitations of business.

  4. Impersonate another person.

  5. Allow any other person or entity to use your identification for posting or viewing comments.

  6. Post the same note more than once or “spam.”


Transplant Unwrapped reserves the right (but is not obligated) to do any or all of the following, in its sole discretion:

  1. Remove communications that are abusive, illegal or disruptive, or that otherwise fail to conform to these Terms and Conditions.

  2. Terminate a user’s access to the blog feature upon any breach of these Terms and Conditions.

  3. Edit or delete any communications posted on the blog feature, regardless of whether such communications violate these standards.

The views and opinions expressed in comments are strictly those of the author(s) and in no way represent those of Transplant Unwrapped. We assume no liability for the information therein and extend no implied or expressed warranty or guarantee of accuracy. Finally, you agree that you will indemnify Transplant Unwrapped against any damages, losses, liabilities, judgments, costs or expenses (including reasonable attorneys’ fees and costs) arising out of a claim by a third party relating to any material you have posted.


Social media guidelines

Transplant Unwrapped encourages comments, discussion and posts on our various social media outlets, including Facebook, Twitter, YouTube, Instagram, LinkedIn, and Transplant Unwrapped’s Patient and Caregiver Forum. We do not pre-moderate comments and welcome most posts. We do not delete or censor comments unless they have content that:

  • is abusive

  • is off-topic

  • contains ad-hominem attacks

  • promotes hate of any kind

  • uses foul language

  • is blatantly spam

  • is reported as abuse

  • violates the Forum’s rules and policies

The Health Insurance Portability and Accountability Act of 1996 (HIPPA) ensures the confidentiality and security of patients' healthcare information. Therefore, to protect patients' privacy, Transplant Unwrapped will not respond to comments related to specific patients. Please remember that when you participate in public social media, your comments and/or posts may be published for all to see. For your own privacy, you shouldn't post detailed personal medical information linked to your name. We can't respond to every comment on public social media, particularly those that deal with individual medical cases and issues.


Transplant Unwrapped maintains the right to modify these terms of use and information policy at any time by electronic notice posted on our website. Your continued use of our website after the date that such notice is posted will be deemed to be your agreement to the changed terms.

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Transplant Unwrapped Privacy Policy

Transplant Unwrapped’s Privacy Policy

The purpose of Transplant Unwrapped’s website is to provide information about the organization and about intestinal and multivisceral transplantation to patients, caregivers, family members, healthcare professionals, and the general public.


By using this site, You agree to be bound by all of the Terms and Conditions and Privacy Policy set forth below. If You do not accept these Terms and Conditions and Privacy Policy, please do not use this site. Transplant Unwrapped may, at its sole discretion, revise these Terms and Conditions and Privacy Policy at any time; therefore, You should visit this page periodically to review the Terms and Conditions.


What information do we collect?

You may browse our website without identifying yourself or providing any personally identifiable information. When you interact with us through your computer, however, we do record certain non-identifying site-usage data, such as your number of visits to our website pages, type of internet browser you are using, domain name of the website you clicked on to come to our website, and/or IP address and server owned by your Internal Service Provider.


If you elect to provide us with individually identifying information, this may include name, email address, phone number, payment details, other demographic information, and health data. Transplant Unwrapped keeps all names, addresses, and all other personal information supplied by visitors to our website strictly confidential unless express consent is given otherwise.


How is this information used?

This data is used to store and process the information to better understand user needs and how we can improve our website; contact you directly including to deliver requested e-books and other educational materials; and to track usage behavior.


We may use this information to communicate with you by email, SMS (text) message, or postal mail from time to time. We may receive confirmation via HTML code when you open an email from us, which helps us measure our reach and ensure reduce or eliminate duplicate e-mails. If you no longer wish to receive e-mails from us, please unsubscribe or contact us at info@transplantunwrapped.org.


What are cookies?

Some parts of our website may also use 'cookies,' which are alphanumeric identifiers that are transferred to your computer through your web browser. You may configure your browser to accept all cookies, reject all cookies, or notify you when a cookie is sent. However, if cookies are rejected, some pages on our website may not function properly. Please view our cookie policy below.


Cookies Policy


When you interact with us, we use technological tools such as "Cookies," "Log Data," and other identifiers to receive and store certain types of information whenever you interact with our site. Examples include your IP address, unique device identifiers, session ids, computer or mobile device make and model, operating system, browser program and version, pages you requested and history. We may use this data to, among other things, tailor, customize and enhance services as well as your experience and to help diagnose, operate and administer our site. We also use cookies to save you time while using the Websites, remind us who you are, and track and target user interests in order to provide a customized experience. 


Cookies allow us to collect Non-Personally Identifiable Information from you, like which pages and applications you visited and what links you clicked on. Use of this information helps us to create a more user-friendly experience for all visitors. You may configure your browser to accept all cookies, reject all cookies, or notify you when a cookie is sent. However, if cookies are rejected, some pages on our website may not function properly.


Our site may automatically collect usage information, such as the numbers and frequency of visitors to our website and their components. This data is only used in the aggregate, that is, as a statistical measure, and not in a manner that would identify you personally. We use this information to design and improve our sites and may provide this information to partners so they can understand how often users use areas of our websites.

When you visit our website, we may automatically collect certain information through the use of electronic tools like Cookies and Web beacons or Pixel tags. We use Non-Personally Identifiable Information to troubleshoot, administer our site, analyze trends, gather demographic and engagement information, enhance and customize our site, measure the effectiveness of our links, content and programming, comply with applicable law, and cooperate with law enforcement activities. We may also share this information with our authorized third-party service providers.


The following links explain how to access cookie settings in various browsers. To opt out, you may visit the settings in the browser you are using:

To opt out of being tracked by Google Analytics across all websites, visit this link: http://tools.google.com/dlpage/gaoptout.


Additionally, Transplant Unwrapped may include a third-party cookie from Google in order to use Google Analytics to monitor site statistics. Please note that Google and its wholly owned subsidiaries may retain and use, subject to the terms of its Privacy Policy (located at http://www.google.com/privacy.html, or such other URL as Google may provide from time to time), information collected in Your use of the Service.

Any automatically collected information may be maintained indefinitely and used for our internal business and marketing purposes, such as assessing traffic patterns and usage of various features on the site but will not be sold or otherwise disclosed to third parties for any purposes.


Please note: Children under the age of 13 should receive parental consent prior to disclosing any personal information and utilizing internet websites.


What security is provided for the information?

Our organization is hosted on the Wix.com platform. Wix.com provides us with the online platform that allows us to share our educational content with you. Your data may be stored through Wix.com’s data storage, databases and the general Wix.com applications. They store your data on secure servers behind a firewall. All direct payment gateways offered by Wix.com and used by our organization adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, MasterCard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of credit card information by our store and its service providers. If you wish to have your data that was submitted to Transplant Unwrapped through the website edited or removed, or if you have concerns about your data, you can contact info@transplantunwrapped.org.


Our website also has a Secure Socket Layer (SSL) security certificate for website protection.


Transplant Unwrapped maintains the right to modify this privacy policy at any time by electronic notice posted on our website. Your continued use of our website after the date that such notice is posted will be deemed to be your agreement to the changed terms.

More

Dialysis

If you are in stage 4 or 5 of chronic kidney disease (CKD) your transplant team may recommend dialysis.


Dialysis is a treatment for kidney failure that removes the waste and extra fluid from the blood using a specialized machine and filter that mimics the role of the kidney.


In general, there are usually two options for type of dialysis treatment:

1. Peritoneal dialysis

2. Hemodialysis


Peritoneal dialysis uses the lining of your abdomen to filter your blood. Because of this, post-this type of dialysis is usually not recommended for post-intestinal transplant patients. (1)


Hemodialysis is when your blood goes through a filter, called a dialyzer, outside your body. A dialyzer is sometimes called an “artificial kidney.”


You will require a special line for your hemodialysis. There are 3 types of vascular access possible for dialysis (2), and the appropriate method will be decided by your transplant team and nephrologist:

  • Fistula: Formed by sewing an artery to a vein, usually in your arm (“arteriovenous or AV” fistula). 

  • Pros: Less prone to infections or blood clots than other types of access.

  • Your veins and arteries self-heal after each needle stick, so a fistula can last a long time.

  • Cons: You may not have adequate vascular access to create a fistula due to previous IV lines and blood draws.

  • Graft: A graft hooks a vein and artery together with a synthetically made piece of tubing, such as Gore-Tex.

  • Second-best kind of access for dialysis.

  • Cons: Downside is that can become infected and/or clotted more easily due to the foreign synthetic material in the body.

  • Can also develop holes, because the synthetic material does not self-heal after needle punctures.

  • Catheter: Plastic tube placed in a large central vein, usually in the internal jugular in the neck region, the subclavian in the chest, or temporarily the femoral vein in the groin may be used.

  • Catheters usually are only used as temporary access, for weeks or months, until a fistula or graft is ready.

  • For some people, a catheter can be more permanent.


Hemodialysis Treatment

  • Two needles are placed in your arm using sterile technique.

  • The dialysis machine pumps blood through the filter and returns the blood to your body.

  • During the process, the machine is checking your blood pressure. It controls how quickly blood flows through the filter and how quickly the fluid is removed from your body.

  • Each session lasts around 4 hours, but can vary by individual and dialysis center.


Treatment can usually make you feel better and have more energy, however, it does not last forever nor does it cure your kidney disease. The stage and severity of chronic kidney disease will determine how often you will require dialysis per week. In general, people usually require it at least 3-4 times per week on a set schedule. Some people also need to have PRN (as needed) orders just in case they start feeling really sick or their bloodwork becomes unstable.


Want to learn more?


Kideny School: Full online instructional modules about kidney health, disease, treatments, and lifestyle visit “Kidney School.” A completely free and comprehensive online tutorial. 


National Institute of Diabetes and Digestive and Kidney Disease (NIDDK)

Educational information on the types of dialysis as well as kidney transplant, financial support, and kidney disease. 


Davita Kidney Care

Major dialysis provider that has many educational materials on the subject. 



References:

1. Hemodialysis. (2018, January 01). Retrieved June 14, 2020, from https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/hemodialysis

2. Medical Education Institute, Inc. (n.d.). Kidney School™. Retrieved June 14, 2020, from https://www.kidneyschool.org/

More

Joint Replacements

It is very common after an intestinal transplant to require some form of joint replacement. This is because long term use of steroids to prevent rejection of the new organ can lead to a condition called avascular necrosis (AVN). AVN results in lack of blood supply to an individual’s joints which can cause bone death. If the bone death is extensive, the joint can collapse. Collapse of large joints, such as the hips and knees, require joint replacements.


“Total joint replacement is a surgical procedure in which parts of an arthritic or damaged joint are removed and replaced with a metal, plastic or ceramic device called a prosthesis. The prosthesis is designed to replicate the movement of a normal, healthy joint.” (1)


The two most common types of joint replacement are:

1. Hip replacement

2. Knee replacement


The biggest risk joint replacement procedures have for transplant patients is the risk of infection due to the weak immune system. This is why most surgeons try to avoid placing hardware into a transplant patient, if possible.


To read more about the different procedures, what to expect, complications, and recovery please visit this page. 



Reference:

1. Total Joint Replacement - OrthoInfo - AAOS. (n.d.). Retrieved June 13, 2020, from https://orthoinfo.aaos.org/en/treatment/total-joint-replacement/

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Ostomy Citation

1. Living with an Ostomy l United Ostomy Associations of America. (2018, December 13). Retrieved June 12, 2020, from https://www.ostomy.org/living-with-an-ostomy/

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Ostomy Terminology

Baseplate/faceplate: The part of the pouching system that adheres to the skin around the stoma. The faceplate can be separate from a pouch in a two-piece system or a pouch and faceplate can be one unit in a one-piece system. Also known as a wafer.


Convex: A type of pouching system that is typically used for stomas that are recessed into or flush with the abdominal surface, or when the tissue around the stoma is soft.


Flange: A plastic ring on the wafer (faceplate) that allows a pouch to snap onto the wafer. Some manufacturers also refer to their wafer/faceplate as a “flange.”


One-piece Pouching System: This is a pouch that is already bound to the faceplate/wafer.


Peristomal skin: The skin around your stoma. It is important to keep this skin healthy for good quality of life.


Pouch: This is the part of the ostomy appliance system that collects waste from the stoma.


Skin Barriers: These are products such as pastes, sheets, and powders that can be used to protect the skin around the stoma. They can be applied before attaching the appliance. The faceplate or wafer is also considered to be a skin barrier as it protects the peristomal skin from stoma effluent.


Stoma: Part of the ostomy that is visible on the outside of the body where waste exits. Ideally it is bright red and protrudes 1 to 1 ½ inches off the abdomen. You should regularly check the size and shape of your stoma, as changes in the stoma may indicate a problem.


Tail Closure/Tail Clip: This seals the bottom of a drainable ostomy pouch used for an ileostomy. Sometimes a tail closure is a separate plastic clamp that is attached to the pouch. Other pouches have a folding/Velcro® system that keeps contents from coming out from the bottom of the pouch.


Two-piece Pouching System: This consists of a separate pouch and faceplate or wafer (i.e., the barrier that sticks to your skin) that comprise the ostomy appliance. Different styles of pouches can be attached to the faceplate without having to remove the faceplate adhered to your skin. Using a two-piece system also allows for more frequent pouch-only changes or alternate methods of cleaning out the pouch contents while the wafer stays in place.


Wafer: This is a barrier or faceplate. It has adhesive on one side to stick on your skin around your stoma. The other side is designed to have a pouch attached to it.

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Citations for Financing a Transplant

  1. Bentlley S, Ortner N. Organ and Tissue Transplants: Cost Estimates, Discussion, and Emerging Issues. Milliman; 2020.

  2. Ueno T, Wada M, Hoshino K, et al. Impact of Intestinal Transplantation for Intestinal Failure in Japan. Transplantation Proceedings. 2014;46(6):2122-2124. doi:10.1016/j.transproceed.2014.06.037.

  3. Health Resources and Services Administration. Partnering With Your Transplant Team. Rockville, MD: Healthcare Systems Bureau; 2008.

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Basic Anatomy and Physiology of the Gastrointestinal System

The gastrointestinal tract begins at the mouth where mechanical digestion begins. Saliva in the mouth functions to moisten and lubricate food before swallowing, as well as to partially digest food particles. Food moves from the mouth, down the esophagus, and into the stomach. In the stomach, glands secrete hydrochloric acid which helps to digest food and destroy bacteria that enters the body with the food. Other than water, little nutrient absorption occurs in the stomach.


The digested particulate matter, known as chyme, moves from the stomach into the first portion of the small intestine known as the duodenum. It is in the small intestine where most of the digestion and absorption of food occurs. Special enzymes breakdown carbohydrates, fat, and proteins into smaller components that the intestinal cells can absorb and use throughout the body for nutrients. The pancreas and liver also secrete substances into the small intestine to aid in digestion of substances. 


Food then passes through the entirety of the small intestine, through the duodenum, the jejunum, and the ileum. Next, food enters the colon which serves two main roles: acts as a storage chamber for undigested material and functions to reabsorp water. 


When initiated, contractions of the rectum and relaxation of the anal sphincter cause defecation and stool is deposited. The process of digestion and absorption relies on many components of proper contractions, enzymes, and cell function. If any of these functions are impaired, then the process may not proceed as planned, as seen in patients with intestinal failure.

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Long Term Outcomes and Quality of Life

There is very little data assessing the quality of life of intestinal transplant patients. Recent studies have shown patients report significant improvement in quality of life, sleep, functional status, and decreased anxiety. (1) Further data, assessment, and long-term follow-up with the population is needed to better assess quality of life variables in this unique population.


Significant factors for long term patient and graft outcomes include preformed and development of donor specific antibodies (DSA), presence of social support, inclusion of the liver, and prompt and early referral. (1) Factors that lead to unfavorable outcome included rejection and need for heavy immunosuppression, cold ischemia time, number of or previous abdominal operations operative time, development of PTLD, and development of CMV. (2)


References:

  1. Bharadwaj S, Tandon P, Gohel TD, et al. Current status of intestinal and multivisceral transplantation. Gastroenterology Report. 2017;5(1):20-28. doi:10.1093/gastro/gow045.

  2. Abu-Elmagd K, Bond G. Gut failure and abdominal visceral transplantation. Proceedings of the Nutrition Society. 2003;62(3):727-737. doi:10.1079/pns2003288.

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Citations for Patient and Caregiver Content

  1. Bharadwaj S, Tandon P, Gohel TD, et al. Current status of intestinal and multivisceral transplantation. Gastroenterology Report. 2017;5(1):20-28. doi:10.1093/gastro/gow045.

  2. Kirk AD. Textbook of Organ Transplantation. Vol 1. Oxford: John Wiley and Sons; 2014.

  3. Garg M, Jones RM, Vaughan RB, Testro AG. Intestinal transplantation: Current status and future directions. Journal of Gastroenterology and Hepatology. 2011;26(8):1221-1228. doi:10.1111/j.1440-1746.2011.06783.x.

  4. Bentlley S, Ortner N. Organ and Tissue Transplants: Cost Estimates, Discussion, and Emerging Issues. Milliman; 2020.

  5. Regions. Organ Procurement and Transplantation Network. https://optn.transplant.hrsa.gov/members/regions. Accessed April 27, 2020.

  6. GI Tract. About Kids Health. https://www.aboutkidshealth.ca/Article?contentid=1467&language=English. Published 2020. Accessed April 27, 2020.

  7. Remotti H, Subramanian S, Martinez M, Kato T, Magid MS. Small-Bowel Allograft Biopsies in the Management of Small-Intestinal and Multivisceral Transplant Recipients: Histopathologic Review and Clinical Correlations. Archives of Pathology & Laboratory Medicine. 2012;136(7):761-771. doi:10.5858/arpa.2011-0596-ra.

  8. Samant H, Kothadia JP. Transplantation Posttransplantation Lymphoproliferative Disorders. [Updated 2020 Feb 3]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK513249/

  9. Ueno T, Kato T, Gaynor J, et al. Renal Dysfunction Following Adult Intestinal Transplant Under Tacrolimus-Based Immunosuppression. Transplantation Proceedings. 2006;38(6):1762-1764. doi:10.1016/j.transproceed.2006.05.066.

  10. Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR). OPTN/SRTR 2018 Annual Data Report. Rockville, MD: Department of Health and Human Services, Health Resources and Services Administration; 2019.

  11. Abu-Elmagd KM, Costa G, Bond GJ, et al. Five Hundred Intestinal and Multivisceral Transplantations at a Single Center. Transactions of the Meeting of the American Surgical Association. 2009;127:198-212. doi:10.1097/sla.0b013e3181b67725.

  12. Contacting My Donor Family. Transplant Living. https://transplantliving.org/community/contacting-my-donor-family. Accessed April 27, 2020.

  13. Chapman JR, Webster AC, Wong G. Cancer in the transplant recipient. Cold Spring Harb Perspect Med. 2013;3(7):a015677. Published 2013 Jul 1. doi:10.1101/cshperspect.a015677

  14. Matsumoto CS, Subramanian S, Fishbein TM. Adult Intestinal Transplantation. Gastroenterology Clinics of North America. 2018;47(2):341-354. doi:10.1016.

  15. Cimino FM, Snyder KAM. Primary Care of the Solid Organ Transplant Recipient. American Family Physicians. 2016;93(3):203-210.

  16. Doshi M. Cancer in Solid Organ Transplantation. In: Onco-Nephrology Curriculum. Detroit, MI: American Society of Nephrology; 2016.

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