Giving It Away

Good-bye to National Kidney Month and a belated hello to National Donor Month. I don’t usually write about transplants and don’t know that much about them, so you and I will be learning together today. Restricting this blog to solely kidney transplants, there’s still quite a bit to write about. 

There are many reasons for needing a kidney transplant. The U.S. Department of Health & Human Services’s Health Resources & Services Administration’s Organ Procurement and Transplantation Network provides the following list of reasons: 

Kidney Diagnosis Categories>Kidney Diagnoses
GLOMERULAR DISEASESAnti-GBM; Chronic Glomerulonephritis: Unspecified; Chronic Glomerulosclerosis: Unspecified; Focal Glomerularsclerosis; Idio/Post-Inf Crescentic; Glomerulonephritis; IGA Nephropathy; Hemolytic Uremic Syndrome; Membranous Glomerulonephritis; Mesangio-Capillary 1 Glomerulonephritis; Mesangio-Capillary 2 Glomerulonephritis; Systemic Lupus Erythematosus; Alport’s Syndrome; Amyloidosis; Membranous Nephropathy; Goodpasture’s Syndrome; Henoch-Schoenlein Purpura; Sickle Cell Anemia; Wegeners Granulomatosis
DIABETESDiabetes: Type I Insulin Dep/Juvenile Onset; Diabetes: Type II Insulin Dep/Adult Onset; Diabetes: Type I Non-insulin Dep/Juv Onset; Diabetes: Type II Non-insulin Dep/Adult Onset
POLYCYSTIC KIDNEYSPolycystic Kidneys
HYPERTENSIVE NEPHROSCLEROSISHypertensive Nephrosclerosis
RENOVASCULAR AND OTHER VASCULAR DISEASESChronic Nephrosclerosis: Unspecified; Malignant Hypertension; Polyarteritis; Progressive Systemic Sclerosis; Renal Artery Thrombosis; Scleroderma
CONGENITAL, RARE FAMILIAL, AND METABOLIC DISORDERSCongenital Obstructive Uropathy; Cystinosis; Fabry’s Disease; Hypoplasia/Dysplasia/Dysgenesis/Agenesis; Medullary Cystic Disease; Nephrophthisis; Prune Belly Syndrome
TUBULAR AND INTERSTITIAL DISEASESAcquired Obstructive Nephropathy; Analgesic Nephropathy; Antibiotic-induced Nephritis; Cancer Chemotherapy-Induced Nephritis; Chronic Pyelonephritis/Reflex; Nephropathy; Gout; Nephritis; Nephrolithiasis; Oxalate Nephropathy; Radiation Nephritis; Acute Tubular Necrosis; Cortical Necrosis; Cyclosporin Nephrotoxicity; Heroin Nephrotoxicity; Sarcoidosis; Urolithiasis
NEOPLASMSIncidental Carcinoma; Lymphoma; Myeloma; Renal Cell Carcinoma; Wilms’ Tumor
RETRANSPLANT/GRAFT FAILURERetransplant/Graft Failure
OTHEROther Rheumatoid Arthritis; Other Familial Nephropathy

Quite a few of these reasons should look familiar to you if you’ve been reading the blog regularly since I’ve written about them. You can use the topics dropdown to the right of the blog if you’d like to refresh your memory about specific reasons. 

Let’s take a look at some astounding numbers. Unfortunately, The National Kidney Foundation could only offer statistics from 2014. Very few sources separate donations specifically by organ, so we’re lucky to have even these older numbers.  

“There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants. (as of 1/11/16) … 

The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs … 

In 2014, 17,107 kidney transplants took place in the US. Of these, 11,570 came from deceased donors and 5,537 came from living donors… 

On average: 

Over 3,000 new patients are added to the kidney waiting list each month… 

13 people die each day while waiting for a life-saving kidney transplant… 

Every 14 minutes someone is added to the kidney transplant list… 

In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant… “ 

Fewer kidney transplants are being performed during the current pandemic. The American Kidney Fund explains why: 

“Because living-donor kidney transplants require two hospital beds and post-surgical recovery care in the hospital, we are hearing that a growing number of transplant centers are temporarily putting living-donor transplants on hold. This both preserves the availability of hospital beds for emergencies and COVID-19 patients, and also keeps non-infected people out of the hospital…. 

The coronavirus spreads easily from person to person, and can be spread by people who do not show symptoms of COVID-19. This puts anyone who has a compromised immune system—including transplant patients who take immunosuppressive drugs—at an increased risk of becoming infected. 
 
Even with social distancing, the virus is still spreading in communities. Newly transplanted patients would be especially vulnerable during their recovery period after transplant surgery. 
 
Another obstacle hospitals face is the need to test deceased donors for the coronavirus. Transplanting an organ from a coronavirus-positive patient could present a grave risk to the recipient. With limited test kits needed for living patients, and the lag time between testing and getting results, some hospitals may have to forgo testing—and procuring organs from—deceased donors…. 

Because COVID-19 is a serious respiratory illness, the most critical patients must be put on ventilators. Ventilators are normally used to keep an organ donor patient alive who is medically brain-dead so that their organs may be removed and transplanted. Those ventilators may be needed for COVID-19 patients instead….” 

Fewer transplants or not, I was curious about how it’s decided who is eligible for a kidney transplant. Nebraska Medicine had the answer in simple terms we can all understand: 

“In order to be eligible to receive a kidney transplant: 

You must have chronic irreversible kidney disease that has not responded to other medical or surgical treatments. You are either on dialysis or may require dialysis in the near future. 

You must qualify for and be able to tolerate major surgery. 

You and your family members/support system must be able to understand the risks and benefits of transplantation, including the long-term need for close medical follow-up and lifelong need for anti-rejection therapy. 

You and your family must be able to accept the responsibilities, including financial, that are part of the long-term care you will need after transplantation. 

Exclusion 

You may not be eligible to receive a kidney transplant due to: 

The presence of some other life-threatening disease or condition that would not improve with transplantation. This could include certain cancers, infections that cannot be treated or cured, or severe, uncorrectable heart disease. 

A history of chronic noncompliance including, but not limited to, medical treatments, medications or other behaviors that would affect your ability to fully care for yourself after transplantation. 

A history of chronic and ongoing drug and/or alcohol abuse that cannot be successfully treated before transplantation, putting you at risk for continued harmful behavior after transplantation. 

A history of serious psychiatric disorders that cannot be successfully treated before transplantation, and that would be considered a high risk for ongoing or increased severity of the psychiatric disorder after transplantation.” 

Note: Weight is included in your tolerability for major surgery. 

There’s so much more to write about re kidney transplant. Next week, we’ll talk about the process itself. 

Until next week, 

Keep living your life! 

How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

That Looks Swollen       

Remember I mentioned that several readers have asked questions that would become blogs? For example, one reader’s question became last week’s blog concerning creatinine and PTH. Another reader’s question became this week’s blog about lymphedema. She was diagnosed with it and wondered if it had anything to do with her protein buildup.

She’s a long time reader and online friend, so she already knows I remind those that ask questions that I am not a doctor and, no matter what I discover, she must speak with her nephrologist before taking any action based on what I wrote. That is always true. I’m a CKD patient just like you. The only difference is that I know how to research (Teaching college level Research Writing taught me a lot.) and happen to have been a writer for decades before I was diagnosed. Just take a look at my Amazon Author Page at amazon.com/author/gailraegarwood . But enough about me.

Anyone know what lymphedema is? I didn’t when I first heard the word, although my Hunter College of C.U.N.Y education as an English teacher gave me some clues. Edema had something to do with swelling under the skin. Actually, we can get more specific with The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-edema :

“suffix meaning swelling resulting from an excessive accumulation of serous fluid in the tissues of the body in (specified) locations”

I took a guess that lymph had to do with the lymph nodes. Using the same dictionary, but this time at https://medical-dictionary.thefreedictionary.com/lymph, I found this:

“The almost colourless fluid that bathes body tissues and is found in the lymphatic vessels that drain the tissues of the fluid that filters across the blood vessel walls from blood. Lymph carries antibodies and lymphocytes (white blood cells that help fight infection) that have entered the lymph nodes from the blood.”

Time to attach the suffix (group of letters added at the end of a word that changes its meaning) to the root (most basic meaning of the word) to come up with a definition of lymphedema. No, not my definition, the same dictionary’s.

“Swelling, especially in subcutaneous tissues, as a result of obstruction of lymphatic vessels or lymph nodes, with accumulation of lymph in the affected region.”

I found this definition at https://www.thefreedictionary.com/lymphedema, but if you switch the search options at the top of the page from dictionary to medical dictionary, you’ll find quite a bit of information about lymphedema.

Okay, we know what lymphedema is now but what – if anything – does that have to do with protein buildup? This is the closest I could come to an answer that

  1. Wasn’t too medical for me to understand and
  2. Had anything to do with the kidneys.

“A thorough medical history and physical examination are done to rule out other causes of limb swelling, such as edema due to congestive heart failure, kidney failure, blood clots, or other conditions.”

It’s from MedicineNet at https://www.medicinenet.com/lymphedema/article.htm#how_is_lymphedema_diagnosed

My friend, while a Chronic Kidney Disease patient, is not in renal failure. Was there something I missed?

Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/treating-lymphedema gives us our first clue. It seems that lymphedema is a buildup of a specific fluid: protein-rich:

“Lymphedema is an abnormal buildup of protein-rich fluid in any part of the body as a result of malfunction in the lymphatic system.”

Malfunction in the lymphatic system? What could cause that? According to Lymphatic Education & Research at https://lymphaticnetwork.org/living-with-lymphedema/lymphatic-disease:

Secondary Lymphedema (acquired regional lymphatic insufficiency) is a disease that is common among adults and children in the United States. It can occur following any trauma, infection or surgery that disrupts the lymphatic channels or results in the loss of lymph nodes. Among the more than 3 million breast cancer survivors alone, acquired or secondary lymphedema is believed to be present in approximately 30% of these individuals, predisposing them to the same long-term problems as described above. Lymphedema also results from prostate, uterine, cervical, abdominal, orthopedic cosmetic (liposuction) and other surgeries, malignant melanoma, and treatments used for both Hodgkin’s and non-Hodgkin’s lymphoma. Radiation, sports injuries, tattooing, and any physical insult to the lymphatic pathways can also cause lymphedema. Even though lymphatic insufficiency may not immediately present at the time any of the events occur, these individuals are at life-long risk for the onset of lymphedema.”

I know the reader who has asked the question has a complex medical history that may include one or more of the conditions listed above. As for the protein buildup, we already know that kidneys which are

not working well don’t filter the protein from your blood as well as they could. So, is there a connection between this reader’s protein buildup and her lymphedema? Sure looks like it.

While the following is from BreastCancer.org at https://www.breastcancer.org/treatment/lymphedema/how/start, it is a simple explanation that may apply to other causes of lymphedema, too:

“… lymph nodes and vessels can’t keep up with the tissues’ need to get rid of extra fluid, proteins (Gail here: my bolding), and waste.… the proteins and wastes do not get filtered out of the lymph as efficiently as they once did. Very gradually, waste and fluid build up…. “

Ready for a topic change? The World Health Organization offers this pictograph for our information. Notice diabetes, one of the main causes of Chronic Kidney Disease.

Until next week,

Keep living your life!