Monday, June 29, 2020

COVID-19 : THE GUIDELINES FOR REOPENING AND THE FUTURE FOR KIDNEY PATIENTS. Final Draft

COVID-19 : THE GUIDELINES FOR REOPENING AND THE FUTURE FOR KIDNEY PATIENTS

On May 21, 2020, the National Kidney Foundation & The American Association of Nephrologists wrote a joint letter to the Secretary of Health and Human Services, Alex Azar concerning the re-opening of America. They made many far-reaching suggestions and expressed their own concerns about the re-opening and it's effects on Kidney Patients. This gives us a glimsp into what the future may bring for Kidney Patients in a Coronavirus infected world.

The letter notes, "...early data from New York City indicate [s] that 20 to 40 percent of COVID-19 ICU patients develop kidney failure and need emergency dialysis. Perhaps most disheartening, new data suggests that the mortality rate for patients on chronic dialysis who develop COVID-19 is in the range of 10-20% and that for kidney transplant patients mortality associated with COVID-19 may be as high as a staggering 30%."

https://www.medscape.com/viewarticle/929585

The letter goes on to say that Kidney Patients should be treated as part of that special populations group and requested that we be treated as part of those "vulnerable individuals" that special COVID-19.
https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-criteria.html

What could be a view into the future for Kidney Patients, the following reccommendarions were made:

1. Kidney Patients should continue to shelter in place;

2. Kidney Patients, their families and clinicians have adequate access to personal protective equipment ;

3. Kidney Patients, their families and clinicians have priority access to COVID-19 testing;

4. Kidney Patients, their families and clinicians have priorty access to a vaccine once developed;

5. ESRD patients should be able to safely access dialysis and other related care;

6. To prioritize the safe resumption of organ transplatation;

7. To extend and make temporary policy changes as required to meet the ongoing needs of Kidney Patients;

8. To address the needs of Acute Kidney Injury (AKI) patients as a result of COVID-19;

9. To make sure that ever hospital has an adequate supply of dialysis equipment and solution to provide care to hospitalized patients with kidney failure.

In light of recent events, this may be what the future holds for Kidney Patients and possibly what we will be advocating for very shortly.

TESTING, SUPPLIES & VACCINATION

To this day, an inadequate number of people have not been tested for the virus. Many parts of the country still do not have access to testing. First, there should be a national, universal policy for COVID-19 testing. In the absence of that, testing should be stratified locally, based on the patients' susceptibility to sever infection, including weekly testing of for the Coronavirus of in-center dialysis patients.

Kidney Patients, under the CDC' Priorities for COVID-19 Testing, Kidney Patients are at high risk, and should be treated "high priority" patients and part of the vunerable group with early access to "scarce testing resources." This should include:

1. All in-center dialysis patients;

2. All CKD & ESRD patients exhibiting COVID-19 symptoms;

3. CKD, ESRD & Transplant Patients living in Nursing homes or other "congregate living arrangements;

4. All ESRD patients living in areas expected to experience a surge in COVID cases;

5. Transplant patients including recipient, living & decedent donors screenings;

6. Patients with CKD stages 3-5.
https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-criteria.html

The bottom line is since Kidney Patients are at higher risk for COVID-19, they must be prioritized for testing. This is complicated by the fact that awareness of CKD is low among both doctors and patients to the point that it goes undiagnosed, and therefore many who should be tested for COVID-19 will not get the opportunity. Because high blood pressure, diabetes and family history of Kidney Disease are high on the list to cause CKD, these people should also be included for priority testing.

Likewise, PPE release to the population should also be based priority of need, where there are areas of shortages, and to the people most at risk, especially dialysis & transplant patients, their families, providers and dialysis centers.

When a vaccine is developed, it should also be distributed to the populations most at risk. CKD, ESRD & Transplant Patients should be "first-in-line" for a vaccine.

DIALYSIS

Dialysis Patients are at high risk for COVID-19, especially in-center patients. This mode of dialysis exposes the patient to contact with transportation divers, clinic doctors, nurses, staff and other patients. This happens in my experience, three times a week for at least 4 hours a session. As America attempts to re-open, the protection of dialysis patients has to become a priority.

At the federal level, current COVID-19 protections should be extended beyond the time for public health emergencies, so state resources don't become overwhelmed putting vulnerable dialysis patients at higher risk.

Home Dialysis Patients

The following reccommendarions were made:

1. Access to Home Dialysis should be improved;

2. The CMMI ESRD TREATMENT CHOICE & Kidney Care Choices Models should be implemented to overcome the issue presented by the in-center model;

3. Payment incentives transitioning patients to home dialysis should be implemented;

4. Special Purpose Renal Dialysis Facilities should act as home dialysis training facilities;

5. Periodic home dialysis monitoring of the patient's home adoption in the patient's home should take place;

6. Services by the dialysis center should occur on the premises of nursing homes or skilled nursing facilities;

7. For patients who require monthly labs, Medicare should pick up the costs for a technician to come to the patient's home;

8. Training by telehealth should be approved;

9. Dialysis facilities should provide support services in the home for these patients on a temporary basis.

IN-CENTER DIALYSIS PATIENTS

Suggestions include:

1. Waiving monthly lab billing for patients transferred to a special COVID-19 facility so as to avoid double billing;

2. Suspend in-person infection control surveys or inspections until the national COVID-19 emergency has ended;

3. Improve Dialysis access to transportation due to COVID-19 infected patients changing to special COVID-19 centers that may be a further distance from home:

4. Patients who are COVID positive or suspected COVID have better and easier access without unnecessary documentation or prior authorization:

MANANAGING THE GROWING CASES OF ACUTE KIDNEY INJURY

According to the NKF & ASN, "between 14 and 30 percent of COVID-19 Patients develop Acute Kidney Injury (AKI), a condition associated with a very high short-term mortality that can lead to chronic kidney disease or even permanent kidney failure requiring dialysis. "

As a result of the Coronavirus outbreak, hospitals are struggling to respond to the high numbers of AKI cases. The increased numbers have put a particular strain on ICU and dialysis resources.

During this Emergency Response Period, and beyond the following have been reccomended:

1. Physicians can bill for telehealth services for AKI under a specific code;

2. Dialysis facilities can be reimbursed for COVID-19 patients being placed on PD;

3. COVID-19 patients with AKI can get special supervision support while hospitalized;

4. Special supervision will continue when they go home from the hospital or in an outpatient setting;

ELECTIVE SURGERY

Currently elective surgeries can resume when appropriate on an outpatient basis. Many patients who need or will soon need dialysis are unable to get the surgery necessary for their access to dialysis (fistula, graft or PD catheter). Hospitals should be given permission to prioritize

these necessary procedures that have been postponed due to the Coronavirus.

ORGAN DONATION AND TRANSPLANTATION

Transplantation has been considered as the gold standard in renal replacement therapy for many patients. Kidney Transplantation is obvious in the event of renal failure and now to prevent ESRD patients from exposure to COVID-19 in a dialysis setting. Both deceased and living kidney donation have decreased during the pandemic. Living donation in particular has suffered a sharp decline or has virtually been eliminated during the outbreak. This could effect living donation for some time to come, perhaps permanently.

The reasons for living donation stoppage includes the limited availability of COVID-19 testing, lack of necessary PPE, and the reluctance to expose healthy donors to the virus, exposing healthy recipients, lack of operating staff and not enough ventilators for surgical purposes. Because the virus has not reach it's peak, provisions suggested to address this crisis now include:

1. Transplant centers & patients should receive priority access to PPE;

2. Living donors and transplant recipients should be included as CDC high priority patients;

3. The COVID-19 status of these patients should be known before surgery;

4. Appropriate quarantine measures should be put in place prior to surgery;

5. Re-entry guidelines should be established to prioritize transplants now that transplants are considered 'essential surgeries.';

6. Financial assistance to living donors by HHS should be provided where needed during the COVID-19 economic downturn where needed including reimbursement of travel and subsistence expenses;

7. Many of the same standards should apply to deceased donation including prioritization of supplies, evaluation of deceased donors in light of COVID-19, access to PPE, ventilators and COVID testing for staff.

DRUG SUPPLIES

A 3 month or 90 day supply of prescription medications should be dispensed to Kidney Patients by Medicare Contractors under Medicare Part B drugs, including immunosuppressive drugs.

CONCLUSION

Due to the recent bounce up of COVID-19 cases in many part of the country, I believe that a number of these suggestions might become reality for Kidney Patients in the near future. Don't be surprised if Kidney Advocates are asked to make many of these requests very soon!

REFERENCES

See How All 50 States Are Reopening (and Closing Again), (June 26, 2020)

NKF/ASN to Secretary Azar concerning the Re-opening of America, https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:a2f3514d-8f82-4544-acd1-3f540e3afefc (2020);

CDC, Coronavirus Disease, The Reopening of America, https://www.cdc.gov/coronavirus/2019-ncov/community/reopening-america.html (May, 2020);

The Horror of the Coronavirus Data Lag, https://www.theatlantic.com/health/archive/2020/05/is-reopening-safe-after-covid-19-we-wont-know-for-weeks/611743/ (May 15, 2020);

ASN and NKF Recommend Policies to HHS for Reopening America, https://www.kidneynews.org/policy-advocacy/leading-edge/asn-and-nkf-recommend-policies-to-hhs-for-reopening-america (May 26, 2020)

Bringing America Back: A guide to COVID-19 vaccines, reopening schools safely and more to know, https://abcnews.go.com/US/bringing-america-back-guide-covid-19-vaccines-reopening/story?id=71156689 (June 10, 2020);

States Are Reopening:
See How Coronavirus Cases Rise or Fall, https://projects.propublica.org/reopening-america/ (June 20, 2020);

Reopening, COVID-19 second wave, and kidney disease, https://www.kidney.org/coronavirus/reopening-second-wave-kidney-disease-covid-19 ( May 11, 2020).

Thursday, June 25, 2020

Kidney patient hospital visits in the age of COVID-19

Kidney patient hospital visits in the age of COVID-19

By Jim Myers, kidney transplant recipient and NKF Kidney Advocacy Committee member and Mary Baliker, transplant recipient and Kidney Advocacy Committee Regional Captain
Recently, we both had to visit our local medical facilities. For most people this might be concerning, however for transplant recipients like us it was terrifying. We wanted to share our experiences with our fellow kidney patients to help them understand what to expect if they find themselves in a similar situation.
Jim Myers’s Hospitalization
I have polycystic kidney disease (PKD) and I’m a transplant patient who recently celebrated my four-year anniversary! I was recently hospitalized after a NM gastrointestinal bleeding scan, an endoscopy and a colonoscopy revealed that I had gastrointestinal hemorrhage. Apparently, the majority of the bleeding was caused by a diverticula that burst.
I was nervous about the experience. I had barely left my apartment since the pandemic to reduce the risk of contracting COVID-19. I was put on the a non-COVID-19 wing of the hospital. I had a nurse and an aide on every shift. I had a gastroenterologist, a nephrologist, and a hospitalist that visited me at least once a day. I have a port for blood draws and infusions and a nurse on the IV team checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour. A social worker stopped by twice during my stay. I appreciated the attention and care they provided.
What I appreciated even more were the various ways that the practitioners tried to protect me from contracting COVID while there:
1. Social Distancing – I noticed every time I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me.
2. Person Protective Equipment (PPE) – I noticed that all physicians and staff always wore PPE in my room. This included masks, gowns, gloves, shoe coverings, and sometimes even face shields. I was asked to wear a facemask anytime someone came into the room and not to shake hands or touch anyone.
I noticed that every time a nurse, doctor or aide came into the room, they would put on the gloves when they came into my room and immediately dispose of them when they left. I have been fighting kidney disease for over 40 years now and I average about two hospital stays a year. I don’t recall seeing this much deliberate care in the past.
3. Walking – Near the end of my stay, I walked around the floor with a caregiver and nurse to help prepare me to go home. I was asked to wear PPE and the nurse and people in the hallways always maintained social distance.
4. Admission & Discharge – I came into the hospital by ambulance because I was extremely light-headed due to blood loss and not ambulatory. Although social distancing was not possible under these conditions, PPE was always worn and I was masked. On discharge, the nurse did wheel me to my ride that took me home in full PPE for her and again a mask for me.
Mary Baliker’s experience
It started with chills, shakes, total body aches, dry cough, and fever of 103.8 degrees. I called my transplant coordinator first and she referred me to my primary care doctor, out of concern that I might have contracted COVID-19. Primary care referred me to telehealth, where I spoke with a physician assistant who thought I should be seen in-person at urgent care. They all thought I might have COVID-19, a frightening prospect.
When I arrived at urgent care, staff were masked and gloved at the door. They asked medical questions about any symptoms and checked my temperature. The receptionist was glassed in with a small open area for her to talk and she was also in PPE. Being immunocompromised and a transplant recipient, I did not feel comfortable sitting in the busy waiting room, so I asked if I could wait in my car until I could be seen. She checked with a nurse and I was taken back to a clean clinic room. The nurse also told me I was the first person in the room that day and it had been thoroughly cleaned beforehand. When I was finally seen, the medical staff were in full PPE, including gowns, gloves, masks and face shields. I felt safe.
The doctor ordered a COVID-19 test, chest x-ray, and lab work. The doctor said the test would be back in 12 hours and they would call me in the morning. When I did not get a call from urgent care, I checked MyChart online and saw the test was negative. I was disappointed that I did not get a call for such an important result for me.
After my urgent care appointment, my transplant coordinator followed up due to sepsis concerns and to check my temperature. I felt a weight lift having my transplant team there when I needed them most. I am recovering quickly, getting daily exercise with my husband and dog, talking to my friends and family via Zoom to keep me connected to the world, and keeping socially distanced from people I don’t know.
Lessons learned
We both greatly appreciated the help and professionalism from the medial teams we met. We also need to thank our families and friend who supported us during our illnesses and who have given us such warm welcomes home.
Remember that as kidney patients, we are at greater risk of contracting COVID-19, particularly if one is a transplant recipient and immunosuppressed. Make sure that your team (and you) are using PPE when you meet. Try to wait in a safe area, where there are fewer people. This could be your car, a private room at the facility, or even outside on a nice day. Keep social distance, especially around medical facilities. Also, if you want to receive results of any tests from them, such as for COVID, you may have to get a commitment that they can contact you directly. As the country begins to  go back out, we urge you to protect yourselves and your families as it’s possible we can expect a new peak this year and the CDC continues to recommend that we self-isolate to stay safe. 
As part of NKF’s Kidney Advocacy Committee, we have had a chance to help advise the organization on the continually evolving needs of kidney patients during this pandemic. This has helped shape the advice that they are giving to our public leadership, including in their latest letter to federal policymakers and state governors, and educational briefings to educate around the concerns of the kidney community as economies reopen.
We hope this gives those of you that need medical care the confidence to contact your local emergency room or health care team. They will take all necessary steps to keep you safe. And, of course, don’t forget to review the great materials that NKF continues to provide us, available on their COVID-19 support webpage.

https://nkfadvocacy.blog/2020/06/24/kidney-patient-hospital-visits-in-the-age-of-covid-19/amp/?__twitter_impression=true

Wednesday, June 24, 2020

Kidney patient hospital visits in the age of COVID-19 NKF VERSION

Kidney patient hospital visits in the age of COVID-19
By Jim Myers, kidney transplant recipient and NKF Kidney Advocacy Committee member and Mary Baliker, transplant recipient and Kidney Advocacy Committee Regional Captain
Recently, we both had to visit our local medical facilities. For most people this might be concerning, however for transplant recipients like us it was terrifying. We wanted to share our experiences with our fellow kidney patients to help them understand what to expect if they find themselves in a similar situation.
Jim Myers’s Hospitalization
I have polycystic kidney disease (PKD) and I’m a transplant patient who recently celebrated my four-year anniversary! I was recently hospitalized after a NM gastrointestinal bleeding scan, an endoscopy and a colonoscopy revealed that I had gastrointestinal hemorrhage. Apparently, the majority of the bleeding was caused by a diverticula that burst.
I was nervous about the experience. I had barely left my apartment since the pandemic to reduce the risk of contracting COVID-19. I was put on the a non-COVID-19 wing of the hospital. I had a nurse and an aide on every shift. I had a gastroenterologist, a nephrologist, and a hospitalist that visited me at least once a day. I have a port for blood draws and infusions and a nurse on the IV team checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour. A social worker stopped by twice during my stay. I appreciated the attention and care they provided. 
What I appreciated even more were the various ways that the practitioners tried to protect me from contracting COVID while there:
1. Social Distancing - I noticed every time I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me.
2. Person Protective Equipment (PPE) - I noticed that all physicians and staff always wore PPE in my room. This included masks, gowns, gloves, shoe coverings, and sometimes even face shields. I was asked to wear a facemask anytime someone came into the room and not to shake hands or touch anyone.
I noticed that every time a nurse, doctor or aide came into the room, they would put on the gloves when they came into my room and immediately dispose of them when they left. I have been fighting kidney disease for over 40 years now and I average about two hospital stays a year. I don't recall seeing this much deliberate care in the past.
3. Walking - Near the end of my stay, I walked around the floor with a caregiver and nurse to help prepare me to go home. I was asked to wear PPE and the nurse and people in the hallways always maintained social distance.
4. Admission & Discharge - I came into the hospital by ambulance because I was extremely light-headed due to blood loss and not ambulatory. Although social distancing was not possible under these conditions, PPE was always worn and I was masked. On discharge, the nurse did wheel me to my ride that took me home in full PPE for her and again a mask for me. 


Mary Baliker’s experience

It started with chills, shakes, total body aches, dry cough, and fever of 103.8 degrees. I called my transplant coordinator first and she referred me to my primary care doctor, out of concern that I might have contracted COVID-19. Primary care referred me to telehealth, where I spoke with a physician assistant who thought I should be seen in-person at urgent care. They all thought I might have COVID-19, a frightening prospect.
When I arrived at urgent care, staff were masked and gloved at the door. They asked medical questions about any symptoms and checked my temperature. The receptionist was glassed in with a small open area for her to talk and she was also in PPE. Being immunocompromised and a transplant recipient, I did not feel comfortable sitting in the busy waiting room, so I asked if I could wait in my car until I could be seen. She checked with a nurse and I was taken back to a clean clinic room. The nurse also told me I was the first person in the room that day and it had been thoroughly cleaned beforehand. When I was finally seen, the medical staff were in full PPE, including gowns, gloves, masks and face shields. I felt safe.
The doctor ordered a COVID-19 test, chest x-ray, and lab work. The doctor said the  test would be back in 12 hours and they would call me in the morning. When I did not get a call from urgent care, I checked MyChart online and saw the test was negative. I was disappointed that I did not get a call for such an important result for me.
After my urgent care appointment, my transplant coordinator followed up due to sepsis concerns and to check my temperature. I felt a weight lift having my transplant team there when I needed them most. I am recovering quickly, getting daily exercise with my husband and dog, talking to my friends and family via Zoom to keep me connected to the world, and keeping socially distanced from people I don’t know.
Lessons learned
We both greatly appreciated the help and professionalism from the medial teams we met. We also need to thank our families and friend who supported us during our illnesses and who have given us such warm welcomes home.
Remember that as kidney patients, we are at greater risk of contracting COVID-19, particularly if one is a transplant recipient and immunosuppressed. Make sure that your team (and you) are using PPE when you meet. Try to wait in a safe area, where there are fewer people. This could be your car, a private room at the facility, or even outside on a nice day. Keep social distance, especially around medical facilities. Also, if you want to receive results of any tests from them, such as for COVID, you may have to get a commitment that they can contact you directly. As the country begins to  go back out, we urge you to protect yourselves and your families as it’s possible we can expect a new peak this year and the CDC continues to recommend that we self-isolate to stay safe.
As part of NKF’s Kidney Advocacy Committee, we have had a chance to help advise the organization on the continually evolving needs of kidney patients during this pandemic. This has helped shape the advice that they are giving to our public leadership, including in their  HYPERLINK "https://www.kidney.org/sites/default/files/20200521_reopening-recommendations-from-nkf-and-asn.pdf" latest letter to federal policymakers and state governors, and  HYPERLINK "https://www.kidney.org/advocacy/issues/covid-19" educational briefings to educate around the concerns of the kidney community as economies reopen.
We hope this gives those of you that need medical care the confidence to contact your local emergency room or health care team. They will take all necessary steps to keep you safe. And, of course, don’t forget to review the great materials that NKF continues to provide us, available on their HYPERLINK "https://www.kidney.org/covid-19"COVID-19 support webpage.




Sunday, June 21, 2020

COVID-19 : THE GUIDELINES FOR REOPENING AND THE FUTURE FOR KIDNEY PATIENTS. Draft 62120

COVID-19 : THE GUIDELINES FOR REOPENING AND THE FUTURE FOR KIDNEY PATIENTS

On May 21, 2020, the National Kidney Foundation & The American Association of Nephrologists wrote a joint letter to the Secretary of Health and Human Services, Alex Azar concerning the re-opening of America. They made many far-reaching suggestions and expressed their own concerns about the re-opening and it's effects on Kidney Patients. This gives us a glimsp into what the future may bring for Kidney Patients in a Coronavirus infected world.

The letter notes, "...early data from New York City indicate [s] that 20 to 40 percent of COVID-19 ICU patients develop kidney failure and need emergency dialysis. Perhaps most disheartening, new data suggests that the mortality rate for patients on chronic dialysis who develop COVID-19 is in the range of 10-20% and that for kidney transplant patients mortality associated with COVID-19 may be as high as a staggering 30%."
https://www.medscape.com/viewarticle/929585

The letter goes on to say that Kidney Patients should be treated as part of that special populations group and requested that we be treated as part of those "vulnerable individuals" that special COVID-19.

What could be a view into the future for Kidney Patients, the following reccommendarions were made:
1. Kidney Patients should continue to shelter in place;
2. Kidney Patients, their families and clinicians have adequate access to personal protective equipment ;
3. Kidney Patients, their families and clinicians have priority access to COVID-19 testing;
4. Kidney Patients, their families and clinicians have priorty access to a vaccine once developed;
5. ESRD patients should be able to safely access dialysis and other related care;
6. To prioritize the safe resumption of organ transplatation;
7. To extend and make temporary policy changes as required to meet the ongoing needs of Kidney Patients;
8. To address the needs of Acute Kidney Injury (AKI) patients as a result of COVID-19;
9. To make sure that ever hospital has an adequate supply of dialysis equipment and solution to provide care to hospitalized patients with kidney failure.
In light of recent events, this may be what the future holds for Kidney Patients and possibly what we will be advocating for very shortly.

TESTING, SUPPLIES & VACCINATION
To this day, an inadequate number of people have not been tested for the virus. Many parts of the country still do not have access to testing. First, there should be a national, universal policy for COVID-19 testing. In the absence of that, testing should be stratified locally, based on the patients' susceptibility to sever infection, including weekly testing of for the Coronavirus of in-center dialysis patients.

Kidney Patients, under the CDC' Priorities for COVID-19 Testing, Kidney Patients are at high risk, and should be treated "high priority" patients and part of the vunerable group with early access to "scarce testing resources." This should include:

1. All in-center dialysis patients;
2. All CKD & ESRD patients exhibiting COVID-19 symptoms;
3. CKD, ESRD & Transplant Patients living in Nursing homes or other "congregate living arrangements;
4. All ESRD patients living in areas expected to experience a surge in COVID cases;
5. Transplant patients including recipient, living & decedent donors screenings;
6. Patients with CKD stages 3-5.

The bottom line is since Kidney Patients are at higher risk for COVID-19, they must be prioritized for testing. This is complicated by the fact that awareness of CKD is low among both doctors and patients to the point that it goes undiagnosed, and therefore many who should be tested for COVID-19 will not get the opportunity. Because high blood pressure, diabetes and family history of Kidney Disease are high on the list to cause CKD, these people should also be included for priority testing.

Likewise, PPE release to the population should also be based priority of need, where there are areas of shortages, and to the people most at risk, especially dialysis & transplant patients, their families, providers and dialysis centers.

When a vaccine is developed, it should also be distributed to the populations most at risk. CKD, ESRD & Transplant Patients should be "first-in-line" for a vaccine.

DIALYSIS
Dialysis Patients are at high risk for COVID-19, especially in-center patients. This mode of dialysis exposes the patient to contact with transportation divers, clinic doctors, nurses, staff and other patients. This happens in my experience, three times a week for at least 4 hours a session. As America attempts to re-open, the protection of dialysis patients has to become a priority.

At the federal level, current COVID-19 protections should be extended beyond the time for public health emergencies, so state resources don't become overwhelmed putting vulnerable dialysis patients at higher risk.

Home Dialysis Patients

The following reccommendarions were made:
1. Access to Home Dialysis should be improved;
2. The CMMI ESRD TREATMENT CHOICE & Kidney Care Choices Models should be implemented to overcome the issue presented by the in-center model;
3. Payment incentives transitioning patients to home dialysis should be implemented;
4. Special Purpose Renal Dialysis Facilities should act as home dialysis training facilities;
5. Periodic home dialysis monitoring of the patient's home adoption in the patient's home should take place;
6. Services by the dialysis center should occur on the premises of nursing homes or skilled nursing facilities;
7. For patients who require monthly labs, Medicare should pick up the costs for a technician to come to the patient's home;
8. Training by telehealth should be approved;
9. Dialysis facilities should provide support services in the home for these patients on a temporary basis.

IN-CENTER DIALYSIS PATIENTS

Suggestions include:
1. Waiving monthly lab billing for patients transferred to a special COVID-19 facility so as to avoid double billing;
2. Suspend in-person infection control surveys or inspections until the national COVID-19 emergency has ended;
3. Improve Dialysis access to transportation due to COVID-19 infected patients changing to special COVID-19 centers that may be a further distance from home:
4. Patients who are COVID positive or suspected COVID have better and easier access without unnecessary documentation or prior authorization:
Managing the Growing Cases of Acute Kidney Injury

According to the NKF & ASN, "between 14 and 30 percent of COVID-19 Patients develop Acute Kidney Injury (AKI), a condition associated with a very high short-term mortality that can lead to chronic kidney disease or even permanent kidney failure requiring dialysis. "

As a result of the Coronavirus outbreak, hospitals are struggling to respond to the high numbers of AKI cases. The increased numbers have put a particular strain on ICU and dialysis resources.

During this Emergency Response Period, and beyond the following have been reccomended:

1. Physicians can bill for telehealth services for AKI under a specific code;
2. Dialysis facilities can be reimbursed for COVID-19 patients being placed on PD;
3. COVID-19 patients with AKI can get special supervision support while hospitalized;
4. Special supervision will continue when they go home from the hospital or in an outpatient setting;

ELECTIVE SURGERY
Currently elective surgeries can resume when appropriate on an outpatient basis. Many patients who need or will soon need dialysis are unable to get the surgery necessary for their access to dialysis (fistula, graft or PD catheter). Hospitals should be given permission to prioritize
these necessary procedures that have been postponed due to the Coronavirus.

ORGAN DONATION AND TRANSPLANTATION

Transplantation has been considered as the gold standard in renal replacement therapy for many patients. Kidney Transplantation is obvious in the event of renal failure and now to prevent ESRD patients from exposure to COVID-19 in a dialysis setting. Both deceased and living kidney donation have decreased during the pandemic. Living donation in particular has suffered a sharp decline or has virtually been eliminated during the outbreak. This could effect living donation for some time to come, perhaps permanently.

The reasons for living donation stoppage includes the limited availability of COVID-19 testing, lack of necessary PPE, and the reluctance to expose healthy donors to the virus, exposing healthy recipients, lack of operating staff and not enough ventilators for surgical purposes. Because the virus has not reach it's peak, provisions suggested to address this crisis now include:
1. Transplant centers & patients should receive priority access to PPE;
2. Living donors and transplant recipients should be included as CDC high priority patients;
3. The COVID-19 status of these patients should be known before surgery;

4. Appropriate quarantine measures should be put in place prior to surgery;

5. Re-entry guidelines should be established to prioritize transplants now that transplants are considered 'essential surgeries.';

6. Financial assistance to living donors by HHS should be provided where needed during the COVID-19 economic downturn where needed including reimbursement of travel and subsistence expenses;

7. Many of the same standards should apply to deceased donation including prioritization of supplies, evaluation of deceased donors in light of COVID-19, access to PPE, ventilators and COVID testing for staff.

DRUG SUPPLIES
A 3 month or 90 day supply of prescription medications should be dispensed to Kidney Patients by Medicare Contractors under Medicare Part B drugs, including immunosuppressive drugs.

Conclusion
Due to the recent bounce up of COVID-19 cases in many part of the country, I believe that a number of these suggestions might become reality for Kidney Patients in the near future. Don't be surprised if Kidney Advocates are asked to make many of these requests very soon!


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Thursday, June 18, 2020

BOOK REVIEW: THE PRETEND FRIEND ASSOCIATION-PARTS ONE TO FOUR BY HANNAH REIMERS - Draft

BOOK REVIEW: THE PRETEND FRIEND ASSOCIATION-PARTS ONE TO FOUR BY HANNAH REIMERS

Self-Published ISBN: 9781520202839 MEDICAL INFORMATION FOUND ON: www.nephcure.org & www.kidney.org Disclaimer: This book was written by a patient, not a doctor. Please consult with a physician if you have questions about your health. Reviewed by James Myers This is a great book! Written in diary form, it is divided up in to 4 sections: Stories, Diagnosis, Seasons and Decisions. I picture the readers of this book to be at the teenage level or a good book to be shared between parent and a younger child. A child kidney patient will find this book both informative and entertaining. Based on Hannah's own true story, pediatric kidney patient, Anna Grace Shramere created her own imaginary universe, complete with friends. The author makes clear that dealing with a serious chronic illness, hospitals, declining health and tests, the best way for Anna to cope is to create a fictional place replete with wonderful and unique locations and characters. Only guided by the limits of her imagination, Anna takes us to a place where stuffed animals talk and cars fly. "It takes time, " a high-pitched voice chimed. I looked down to see Squeaky at my feet looking up at me with her beady penguin eyes. 'Nephrotic syndrome doesn't go away fast. A lot of sicknesses last a while- like cancer and rheumatoid arthritis and Crohns and heart disease and so many more. Some never totally go away, but things get better with time and treatments and stuff." She shuffled her little feet. "I've been in and out of remission lots of times. When I am in remission or partial remission, I 'm almost totally normal, just with a pills to take in the morning and a couple of foods to eat. Sometimes I am totally normal with no medicines or side effects or anything! There are times things are different, like when I have to go to the hospital, but even then, I'm still me. Anyway, I'm gonna go swimming now. Wanna come?" pg. 183. Notice the rich character development and the detailed dialogue. The book is replete with beautiful sections like this. Hannah Reimers has written an important book, chronicling the inner-most thoughts of a child with kidney disease and her coping mechanisms. I strongly recommend the book with this caveat. There are frank discussions about darker matters in the book. As a parent with younger children, you may wish to pre-read the book first. As a kidney patient myself, it is a reminder of why I advocate for Pediatric Kidney Patients. How do they deal with kidney situations I found disturbing as an adult? They use their imaginations. Hannah has a great one! Get Outlook for Android 

Wednesday, June 10, 2020

Draft of mine and Mary's COVID-19 Blogs


COVID-19 AND OUR RECENT HOSPITALIZATIONS





JIM'S STORY


COVID-19 AND MY RECENT HOSPITALIZATION


I was recently hospitalized in Munster Community Hospital, in Munster, Indiana from May 12th to May 17th, 2020. The official diagnosis was Gastrointestinal Hemmorrhage.
After a NM GI Bleeding Scan, an Endoscopy and a Colonoscopy, it was determined that I had Ulcers and Diverticulitis. Apparently, the majority of the bleeding was caused by a diverticuli that burst.

I have PKD, (polycystic kidney disease). I am currently a kidney transplant patient, who recently celebrated my 4 year anniversary! I am one of those guys that is more susceptible to the virus than your average person.

What I wish to talk about today was the precautions members of the hospital staff and physicians took to protect me from the Coronavirus.

PHYSICIAN AND STAFF COVID-19 PROTECTIONS

I was put on the 3rd floor, the heart and kidney floor of the hospital which is a non-COVID-19 wing of the hospital. I had a nurse and an aid on every shift. I had a Gastro doc, a Nephrologist, and a Hospitalist that visited me at least once a day. I have a port for blood draws and infusions. A member of the IV team (a nurse) checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour. The maintenance staff came by once a day. A social worker stopped by twice during my stay. So there was a lot of contact between myself and employees from the hospital.

Here are some of the ways the Doctors and Staff tried to protect me from Cyrus the Virus:

1. Social Distancing - I noticed everytime I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me;
2. Person Protective Equipment- I noticed that all physicians and staff wore PPE in my room at all times. This included masks, gowns, gloves and sometimes even shoe coverings. My Hospitalist also wore a face shield in addition to the other PPE.
3. Expectations for me during room visits- I was asked to wear a facemask any time someone came into the room. I was also asked not to shake hands or touch anyone.
4. Gloves- There were boxes of form-fitting plastic gloves in boxes in my room that came in sizes from small to large. I noticed that every time a nurse, doctor or aide came into the room, they would put on the gloves when they came into my room and immediately despose of them when they left. This may be standard operating procedure, but there seemed to be more of an emphasis on not taking a set of gloves from one patient room to the next than I normally observed during a hospital stay. I have been fighting kidney disease for over 40 years now, and I average about 2 hospital stays a year. I don't recall seeing this much deliberate precision in the past.
5. Walking- Near the end of my stay, I walked around the floor to help prepare me to go home. My friend, the IV stand and a nurse had to come with me. I was asked to wear a mask and the nurse and people in the hallways maintained their social distance.
6. Admission & Discharge- I came into the hospital by ambulance because I was extremely light-headed due to blood loss and not able to ambulatory. Although social distancing was not possible under these conditions, PPE was worn at all times and I was masked. On discharge, the nurse did wheel me to the Lyft ride share that took me home. Same story, full PPE for her, mask for me. Even the Lyft driver had a plastic shield between the front and back seats and was wearing a mask.

CONCLUSION

The healthcare professionals at Munster Community not only took very good care of me, the made every effort to make sure I was protected from the virus. I greatly appreciate their help and professionalism. I would also like to thank all of my friends and my son, Jim, who supported me during my stay, and gave me a warm welcome home. I would like to thank my landlords at Mt Zion for helping me obtain an ambulance. I hope this blog gives those of you that need medical care for something other than the Coronavirus, the confidence to contact your local emergency room or health care team. They will take all necessary steps to try to keep you safe and informed. Peace my friends!







MARY'S STORY 

Mary Baliker This is a rough draft of my notes. My experience as a kidney transplant recipient (20 years out) during COVID-19. It starts with chills, shakes, total body aches, dry cough, and fever of 103.8. Called my transplant coordinator she referred me to my primary care doctor as it is possible that I had COVID-19. Primary Care referred me to telehealth. There I talked with a physician assistant who thought I should be seen in person at urgent care. Medical staff thought I might have COVID. When I arrived at the clinic, staff were masked and gloved at the door. They asked medical questions if I was having any symptoms and checking temperatures. Then went to receptionist desk. Receptionist was glassed in with a small open area for her to talk, she was also masked. Being immunocompromised and a transplant recipient I did not feel comfortable going in the busy waiting room. I asked if I could wait in my car until I could be seen. She checked with the nurse and instead the nurse took me back to a clinic room. The medical staff were gowned, gloved, masked and wore a face shield. The nurse also told me I was the first person in the room that day and it had been thoroughly cleaned. I felt safe. I thought I could possibly have a UTI not symptomatic, as I do not usually have symptoms. I requested that the doctor also add a urine culture to the tests. She ordered a COVID test, Chest x ray, lab work, she was not going to run my transplant labs so I called my transplant coordinator so she would add these as well. The UA was positive, so antibiotics were called in to pharmacy. The doctor said the COVID test would be back in 12 hours and would call me in the morning. I did not get a call from urgent care, but I checked MyChart online and the test was negative. I was disappointed that I did not get a call for such an important result. After urgent care appointment transplant coordinator followed up due to sepsis concern and temperature. I felt comfortable that my transplant team was following me now. I felt I had isolated since early March practicing the safely at home, I had not been out to the grocery store, clinic or pharmacy. I order online for groceries and other things. Delivery to my home and put in garage for 24 - 48 hours. For my overall wellbeing I walk the neighborhood with my husband and dog or go to a park. I also have a routine working out at home that includes biking, elliptical, weights and yoga. Zoom calls have also helped make me feel connected to work colleagues, family and friends. Happy to say I am feeling better. Be safe and be your own advocate!   

Tuesday, June 9, 2020

COVID-19 and My Recent Hospitalization (AAKP VERSION)

COVID-19 and My Recent Hospitalization

https://aakp.org/covid-19-and-my-recent-hospitalization/
I was recently hospitalized in Munster Community Hospital in Munster, Indiana, from May 12 to May 17, 2020. The official diagnosis was Gastrointestinal Hemmorrhage.
After a NM GI Bleeding Scan, an Endoscopy, and a Colonoscopy, it was determined that I had Ulcers and Diverticulitis. Apparently, the majority of the bleeding was caused by a diverticuli that burst.

I have PKD (polycystic kidney disease). I am currently a kidney transplant patient who recently celebrated my 4 year anniversary! I am one of those guys that is more susceptible to the virus than your average person.

What I wish to talk about today was the precautions that members of the hospital staff and physicians took to protect me from the coronavirus.
PHYSICIAN AND STAFF COVID-19 PROTECTIONS

I was put on the third floor (the heart and kidney floor) of the hospital, which is a non-COVID-19 wing of the hospital. I had a nurse and an aid on every shift. I had a Gastro doc, a Nephrologist, and a Hospitalist that visited me at least once a day. I have a port for blood draws and infusions. A member of the intubation team (a nurse) checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour, the maintenance staff came by once a day, and a social worker stopped by twice during my stay. So there was a lot of contact between myself and employees from the hospital.

Here are some of the ways the doctors and staff tried to protect me from the virus:

1. Social Distancing: Everytime I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me.
2. Personal Protective Equipment: All physicians and staff wore PPE in my room at all times. This included masks, gowns, gloves, and sometimes even shoe coverings. My hospitalist also wore a face shield in addition to the other PPE.
3. Expectations for me during room visits: I was asked to wear a facemask any time someone came into the room and not to shake hands or touch anyone.
4. Gloves: There were boxes of form-fitting plastic gloves in boxes in my room that came in sizes from small to large, and every time a nurse, doctor, or aide came into the room, they would put on the gloves and immediately dispose of them when they left. This may be standard operating procedure, but there seemed to be more of an emphasis on not taking a set of gloves from one patient room to the next than I've observed in the past during a hospital stay. I have been fighting kidney disease for over 40 years now, and I average about 2 hospital stays a year. I don't recall seeing this much deliberate precision in the past.
5. Walking: Near the end of my stay, I walked around the floor to help prepare me to go home. My friend, the IV stand, and a nurse had to come with me. I was asked to wear a mask and the nurse and people in the hallways maintained their social distance.
6. Admission & Discharge: I came into the hospital by ambulance because I was extremely light-headed due to blood loss and not able to ambulatory. Although social distancing was not possible under these conditions, PPE was worn at all times and I was masked. On discharge, the nurse wheeled me to the Lyft ride that took me home—full PPE for her and a mask for me. Even the Lyft driver had a plastic shield between the front and back seats and was wearing a mask.
CONCLUSION

The healthcare professionals at Munster Community not only took very good care of me, they made every effort possible to ensure I was protected from the virus. I greatly appreciate their help and professionalism. I would also like to thank all of my friends and my son, Jim, who supported me during my stay, and gave me a warm welcome home. I would like to thank my landlords at Mt Zion for helping me obtain an ambulance. I hope this blog gives those of you that need medical care, for something other than the coronavirus, the confidence to contact your local emergency room or health care team. They will take all necessary steps to try to keep you safe and informed. Peace, my friends!

Your Uncle Jim Myers