Yes, Living Donation Help is Available

Let’s say you’ve read the past two  or three blogs and understand that more kidney donations are needed. Let’s say deceased donation is just not hitting you right. Let’s say you want to make a living donation since you have two kidneys and only need one to stay alive. First of all, congratulations on making that big decision. Next, do you know there are organizations that will help you… and it won’t cost you a penny. I’ll let the organizations speak for themselves.

You do need to apply for this first one. Not all applications are guaranteed entry to the program.

The National Living Donor Assistance Center
“Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

The National Living Donor Assistance Center exists to provide access to transplantation for those who want to donate, but face financial barriers to doing so.

This program is administered by the Division of Transplantation (DoT), Healthcare Systems Bureau (HSB), Health Resources and Services Administration (HRSA), United States Health and Human Services (HHS) through a cooperative agreement with the University of Kansas (KU) and the American Society of Transplant Surgeons (ASTS). For details about the legislation that authorizes this program and its history, please click here.”

UNOS (United Network for Organ Sharing) offers information that clarifies some of the questions you may have, in addition to assistance in donating.

“With living donation, a living person donates an organ or part of an organ for transplantation. Most living donors donate one of their kidneys or a part of their liver. Much more rarely, living donors may donate other organs. Living organ donors make thousands of transplants possible every year.

Relatives, loved ones, friends and even individuals who wish to remain anonymous often serve as living donors to spare a patient a long and uncertain wait. In 2023, more than 6,900 transplants were made possible by living donors.

If you are considering living donation, it is critical to gather as much information as you can from various sources.

View downloadable brochures for more detailed information

Who can be a living donor?

Living donors should be:

• in good overall physical and mental health and
• older than 18 years of age.

Medical conditions such as uncontrolled high blood pressure, diabetes, cancer, certain infections, or an uncontrolled psychiatric condition, could prevent you from being a living donor.

Since some donor health conditions could harm a transplant recipient, it is important that you share all information about your physical and mental health. You must be fully informed of the known risks involved with donating and complete a full medical and psychosocial evaluation. Your decision to donate should be completely voluntary and free of pressure or guilt.

Visit the UNOS patient website, Transplant Living, to learn more about living donation.”

The National Kidney Registry outlines the approximate time necessary to donate a kidney.

“Donating a kidney is a life-changing gift but also a major commitment that involves extensive testing, major surgery and weeks of recovery time. If you decide to donate a kidney, here’s the process you’ll go through.

Screening & Testing

1. 45 mins Complete a confidential screening / medical history
2. ~3 days Center will contact you
3. ~3 days Complete standard workup
4. 1 – 4 months Get cleared for donation

Surgery & Recovery

• 1 day Complete pre-op
• 1 – 5 hours Complete surgery
• 1 – 4 days Recover in hospital
• 1 week Refrain from flying
• 1 – 4 weeks Recover at home*

*Most people can return to normal activities after 2 – 4 weeks. Donors with physically demanding jobs may need 4 – 6 weeks of recovery before returning to work. High-performance athletes will need 6 months to a year before they are back to pre-donation performance levels.”

How could I not check the American Kidney Fund for more information?

“If you are interested in living kidney donation:

• Contact the transplant center where a transplant candidate is registered.
• You will need to have an evaluation at the transplant center to make sure that you are a good match for the person you want to donate to and that you are healthy enough to donate.
• If you are a match, healthy and willing to donate, you and the recipient can schedule the transplant at a time that works for both of you.
• If you are not a match for the intended recipient, but still want to donate your kidney so that the recipient you know can receive a kidney that is a match, paired kidney exchange may be an option for you.

Another way to donate a kidney while you are alive is to give a kidney to someone you do not necessarily know. This is called living non-directed donation. If you are interested in donating a kidney to someone you do not know, the transplant center might ask you to donate a kidney when you are a match for someone who is waiting for a kidney in your area, or as part of kidney paired donation. You will never be forced to donate.”

Hey, how do you find the transplant centers anyway? The National Kidney Foundation offers easy to follow directions.

“To find a transplant center in your area visit the Organ Procurement and Transplantation Network (OPTN) website. Then follow these steps:

1. Select ‘Transplant Centers by Organ’ under Member Type
2. Select ‘Kidney’ for Organ Type
3. Select your state or region”

I tried it… just to check, of course. I entered my state rather than region and found four kidney transplant centers in Arizona. Well, that was easy.

Today’s blog was only a sampling of the places that can help you with your living kidney donation. I hope it was enough to peak your interest.

Until next week,

Keep living your life!

This is no Joke

Today is April Fool’s Day! [Oh, happy anniversary to cousins Gail and Bob Halpern.] But today’s topic is no joke. Last week, the lovely Leesa Thompson eased us into National Donate Life Month. We’ll learn more about this today.

Let’s start at the beginning. This is a relatively new celebration, started in 2003, only 21 years ago. The American Society of Transplantation explains:

“National Donate Life Month (NDLM) was instituted by Donate Life America and its partnering organizations in 2003. Celebrated in April each year, NDLM features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation.”

The American Society of Transplantation describes itself as:

“The American Society of Transplantation is a diverse organization dedicated to advancing the field of transplantation and improving patient care by promoting research, education, advocacy, organ donation, and service to the community through a lens of equity and inclusion.

The history of the AST starts in 1981, when its charter members met and decided a separate society should be organized for transplant physicians. The American Society of Transplant Physicians (ASTP) was founded on May 10, 1982, and open to all physicians and health professionals interested in transplant medicine and biology. In 1998, the ASTP name was changed to the American Society of Transplantation (AST). Today, we are a growing and diverse organization of more than 4,200 members representing all areas of the field of organ transplantation and donation. In 2018, the Society grew, incorporating patient voice into its efforts through the evolution of its public facing Power2Save campaign. As we look to the future, our vision is bold and aspirational. While our 5 pillars remain the same, it is important that we plan a deliberate roadmap for the future.”

Donate Life America was a fount of information. One type of donation is deceased donation. I wrote about that in last year’s Christmas blog. I unwittingly called it a cadaver donation and am still apologizing for that mistake. However, I digress, so back to Donate Life America which offers more information about deceased donation:

“Deceased organ donation is the process of giving an organ or a part of an organ, at the time of the donor’s death, for the purpose of transplantation to another person. Only after all efforts to save the patient’s life have been exhausted, tests have been performed to confirm the absence of brain or brainstem activity, and brain death has been declared, is donation a possibility. 

The state donor registry and National Donate Life Registry are searched securely online to determine if the patient has authorized donation. If the potential donor is not found in a registry, their next of kin or legally authorized representative is offered the opportunity to authorize the donation. Donation and transplantation professionals follow national policy to determine which organs can be transplanted and to which patients on the national transplant waiting list the organs are to be allocated.”

I’ve written about living donation, too. Rather than list the multiple blog dates, you can use the Topic dropdown on the right side of the blog and scroll down to donation. In the meantime, I’m going to hop over to the American Kidney Fund to find out about the different kinds of living donation:

“ If you need a new kidney, consider a living donor kidney transplant. A kidney transplant from a living donor will last longer than a transplant from a donor who has died (a deceased donor). And your transplant can happen as soon as you and your living donor are ready!

A living donor kidney transplant is a surgery to give you a healthy kidney from someone who is still alive. On average, living kidney donor transplants last 15 to 20 years. Deceased donor transplants last 10 to 15 years on average. Each year, about 4 out of every 10 donations (40%) are from living donors. 

What are the types of living donor transplants?

Directed & nondirected donation

Directed donation is when a living donor gives a kidney to a person they have chosen, such as a family member or friend. This is the most common type of living donor transplant.

Nondirected donation is when a living donor gives a kidney to a stranger. This is sometimes called altruistic or good Samaritan donation and is the least common type of donation.

Kidney paired donation (KPD) and donation chains

Kidney paired donation (KPD) and donation chains can happen when a donor and recipient pair are not a good match, so they swap with other pairs to get better matches. These swaps make transplants possible for more people and have become more common in recent years:

• With kidney paired donation (also called paired exchange), two donor and recipient pairs swap donors to get better kidney matches.
• With donation chains, many pairs or nondirected donors swap donors to get better kidney matches.

Incompatible kidney transplant

Some transplant centers now offer incompatible kidney transplants when a donor and recipient are not a good match. Transplant doctors use special methods to make the recipient’s body less sensitive to the donor’s incompatible kidney. Talk to your doctor about if this could be an option for you.”

Because I’m 77, I wondered if my age would be a problem should I need a transplant. The National Kidney Foundation answered my question:

“In many cases, people who are older or have other health conditions like diabetes can still have successful kidney transplants. Careful evaluation at a transplant center is needed to understand and deal with any special risks. You may be asked to do some things that can lessen certain risks and improve the chances of a successful transplant. For example, you may be asked to lose weight or quit smoking. Only a transplant center can decide if you are healthy enough to receive a kidney transplant.

If you have diabetes, you may also be able to have a pancreas transplant. Ask your healthcare professional about getting a pancreas transplant along with a kidney transplant.”

After 14 years of writing about anything kidney related, I realize this is a pretty superficial blog about donation. Hang on, we have the rest of the month for more information.

Until next week,

Keep living your life!

A Matter of Life: National Kidney Month, Donor Month, and the Donor’s Dilemma

Our old friend, Leesa Thompson …. Wait a minute! I don’t mean you’re old, Leesa. I mean we’ve had a couple of guest blogs from you before. Please forgive me. Anyway, Leesa has brought another guest blog to me. This one is perfect for National Kidney Month and a lovely way to end this celebratory month. Take it away, Leesa…

National Kidney Month is observed annually in March to raise awareness about kidney health, kidney disease prevention, and the importance of early detection and treatment. During this month-long observance, various organizations, including the National Kidney Foundation (NKF) and the American Kidney Fund (AKF), as well as healthcare providers and advocates, work to educate the public about kidney health and the risk factors associated with kidney disease. The primary goals of National Kidney Month are to:

1. Raise Awareness: National Kidney Month aims to increase awareness about the importance of kidney health and the prevalence of kidney disease, which affects millions of people worldwide. By educating the public about the risk factors, symptoms, and complications of kidney disease, advocates hope to encourage individuals to take proactive steps to protect their kidney health.

2. Promote Prevention: Kidney disease is often preventable or manageable when detected early. National Kidney Month provides an opportunity to promote healthy lifestyle habits, such as maintaining a balanced diet, staying hydrated, exercising regularly, managing blood pressure and blood sugar levels, and avoiding tobacco use, which can help reduce the risk of developing kidney disease.

3. Support Patients: National Kidney Month also serves as a platform to show support for individuals living with kidney disease and those who have undergone kidney transplantation. It highlights the importance of access to quality healthcare, treatment options, and support services for kidney disease patients and their families. Throughout National Kidney Month, activities may include educational events, screenings, fundraisers, advocacy campaigns, and social media initiatives aimed at raising awareness and promoting kidney health. By participating in these activities and spreading the word about kidney health, individuals can help reduce the burden of kidney disease and improve outcomes for those affected by this condition.

Donate Life Month is an observance held annually in April [Gail here: more on that next month] to raise awareness about organ donation and encourage individuals to register as organ, eye, and tissue donors. During Donate Life Month, various events, campaigns, and educational initiatives are organized by organizations such as Donate Life America, transplant centers, and other healthcare organizations to promote the importance of organ donation and transplantation. The primary goal of Donate Life Month is to inspire people to make the decision to become organ donors and to discuss their wishes with their families. By increasing awareness about the critical need for organ donors and dispelling myths and misconceptions surrounding donation, advocates hope to save more lives and improve the quality of life for individuals awaiting life-saving transplants. Throughout the month of April, activities may include community outreach events, educational workshops, social media campaigns, donor registration drives, and storytelling initiatives featuring transplant recipients, donor families, and healthcare professionals. These efforts aim to highlight the profound impact of organ donation on individuals and communities and to encourage meaningful conversations about donation and transplantation. Participation in Donate Life Month provides an opportunity for individuals to learn more about the donation process, the importance of registering as a donor, and the incredible gift of life that organ donation represents. By engaging with the Donate Life community and supporting initiatives to raise awareness, individuals can help to increase the number of registered donors and ultimately save more lives through organ transplantation.

Becoming a living kidney donor is a decision that carries significant weight, both for the donor and the recipient. Understanding the full spectrum of advantages and disadvantages associated with this altruistic act is essential for individuals contemplating such a profound gesture, particularly in light of the critical shortage of available kidneys for transplantation.

On the positive side, the primary benefit of being a living kidney donor lies in the opportunity to save a life. With approximately 100,000 individuals approved for kidney transplants in the United States alone, the demand for organ donors far exceeds the available supply. By offering one of their kidneys to someone suffering from kidney failure, donors directly impact the recipient’s health and lifespan. This act of selflessness not only saves a life but also brings immeasurable satisfaction and a deep sense of fulfillment to the donor, knowing they’ve made a tangible and potentially life-saving difference in another person’s life. Moreover, the impact of a kidney donation extends beyond the individual recipient to their family, friends, and community. It fosters a culture of compassion and generosity, inspiring others to consider organ donation as a means of giving back and making a positive impact on society. Additionally, undergoing the rigorous medical evaluation process before donation can lead to early detection and treatment of previously undiagnosed health issues in the donor, ensuring the best possible outcome for both parties involved. Furthermore, living kidney donors typically experience minimal long-term health effects, with studies indicating that they generally enjoy good health and life expectancy post-donation. This reassurance can alleviate concerns about the potential impact on the donor’s own health and well-being. Additionally, the experience of being a living kidney donor can lead to personal growth and a deeper appreciation for one’s own health. Donors often report feeling a renewed sense of purpose and gratitude for their own well-being, inspiring them to prioritize self-care and adopt healthier lifestyle habits.

However, despite the numerous benefits associated with being a living kidney donor, there are also potential drawbacks and considerations to be mindful of. Donating a kidney involves undergoing surgery, which carries inherent risks such as bleeding, infection, and adverse reactions to anesthesia. While serious complications are rare, donors must be prepared for the physical discomfort and recovery period following surgery, which may necessitate several weeks of rest and limited activity. Furthermore, the emotional and psychological impact of being a living kidney donor should not be underestimated. Donors may experience a range of emotions, including anxiety, guilt, and worry about the recipient’s well-being, as well as concerns about their own health and future. It is essential for donors to have access to adequate support and counseling throughout the donation process to address any emotional challenges and ensure their well-being. Additionally, there may be practical and logistical considerations to contend with, such as arranging time off from work for surgery and recovery, coordinating travel and accommodations if the donor and recipient are not in the same location, and navigating financial expenses related to the donation process. Donors should carefully plan and prepare for these logistical challenges to minimize stress and ensure a smooth donation experience.

In summary, while being a living kidney donor offers the opportunity to save a life and make a profound difference in someone’s life, it is essential for individuals to carefully weigh the potential risks and benefits before making this decision. By thoroughly considering all aspects of the donation process and seeking support from medical professionals and support networks, potential donors can make an informed decision that aligns with their values and priorities, ultimately contributing to the greater good and leaving a lasting legacy of compassion and generosity.

Thank you for closing out National Kidney Month and easing us into National Donate Life Month, Leesa.

Until next week,

Keep living your life!

I Checked This on a Whim

It looks like I’m on track for a hip replacement, as if pancreatic cancer weren’t enough to have happened to my poor body. I have this theory that everything is connected to the kidneys. That’s probably what’s kept me blogging for the last 13 years. But I thought a connection between hip replacement and the kidneys might be a little too far out. I researched anyway just for the sake of being thorough. Oh, my gosh! There is a connection. No kidding.

Since I didn’t know what was involved in a hip replacement, I speculated that you might not either. So, let’s take care of that before we get to its relation to the kidneys. The Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases was extremely helpful here.

“Hip replacement surgery, or hip arthroplasty, is a surgical procedure in which an orthopaedic surgeon removes the diseased parts of the hip joint and replaces them with new, artificial parts. These artificial parts mimic the function of the normal hip joint….

The hip joint is a ball and socket joint and is one of the largest joints in the body. The upper end of the femur (thigh bone) meets the pelvis to create the joint. The ‘ball’ at the end of the femur is called the femoral head and fits into the ‘socket’ (the acetabulum) in the pelvis.

During a hip replacement, the surgeon makes an incision over the thigh and removes the diseased or damaged bone and cartilage from the hip joint. Next, the surgeon replaces the head of the femur and acetabulum with new, artificial parts. Surgeons have learned how to perform hip replacement with smaller incisions over time to limit the amount of trauma to the soft tissues.:

While that seems straightforward, there is a chance of Acute Kidney Injury [AKI] after this kind of surgery.
How? According to MedPageToday:

“Multiple mechanisms may contribute to postoperative kidney injury following total hip arthroplasty, including inflammation, use of potentially nephrotoxic medications such as angiotensin-converting enzyme inhibitor/angiotensin receptor blockers and nonsteroidal anti-inflammatory drugs, and also hemodynamic factors. Furthermore, risk factors that have previously been shown to be associated with postsurgical kidney injury include cardiovascular disease, diabetes, and creatinine above 2 mg/dL, along with obesity, metabolic syndrome, and perioperative antibiotic use.”

Uh-oh, I have diabetes, obesity, and metabolic syndrome. On the other hand, I sincerely doubt the surgeon will use nephrotoxic medications once I tell him I have chronic kidney disease.

What are the symptoms? How will I even begin to suspect I’ve developed AKI? The American Kidney Fund lays the symptoms out for us:

• “Urinating (peeing) less often.
• Swelling in your legs, ankles or feet.
• Feeling weak and tired.
• Feeling like you cannot catch your breath.
• Feeling confused.
• Feeling sick to your stomach.
• Feeling pain or pressure in your chest.
• Seizures or coma (in severe cases of AKI)”

Now I was worried about AKI following the hip replacement. I wanted to know what, if anything, I could do to avoid it. A trusted source, the Cleveland Clinic’s Journal of Medicine, offered some suggestions.

“Yes, there are ways to reduce the risk of acute kidney injury (AKI) after hip replacement surgery. According to a review article published in the Cleveland Clinic Journal of Medicine, some of the factors that increase the risk of AKI after primary total joint arthroplasty include older age, higher body mass index, chronic kidney disease, comorbidity, anemia, perioperative transfusion, aminoglycoside prophylaxis and treatment, preoperative heart murmur, and renin-angiotensin-aldosterone system blockade….

To reduce the risk of AKI after hip replacement surgery, you can consider the following measures:

1. Avoid nephrotoxic medications: Avoid taking medications that can damage your kidneys. Your doctor will advise you on which medications to avoid.
2. Stay hydrated: Drink plenty of fluids to maintain adequate intravascular volume.
3. Avoid hypotension: Careful avoidance of medications that lead to hypotension.
4. Effective comorbidity management: Effective management of comorbidities such as cardiac, vascular, pulmonary, renal, and diabetes ….
5. Patient education: Educate yourself about the risks and preventive measures for AKI.”

For some reason, I was unnerved by how user-friendly these suggestions were. Just in case they didn’t work, I took a tentative peek at the results of what untreated AKI could be. Yale Medicine bluntly stated,

“If left untreated, AKI has a very high mortality rate. If the underlying cause is diagnosed and treated, your prognosis will depend on how much damage has been done to the kidneys.” 

I was really worried now and didn’t want to leave any AKI after the surgery untreated, not that I would have anyway.  It seems to me that I really need to speak to the surgeon. Who knows? Maybe they won’t even do the surgery since I’m stage 3b chronic kidney disease and type 2 diabetic. I found myself both a little scared and really annoyed that my appointment with the surgeon is not until the middle of next month, his earliest appointment.

Non surgery alternatives are not for me. I tried steroid injections to mask the pain and my blood glucose went through the roof. Unacceptable. The Spine and Pain Center of California listed even more reasons steroids may not be for you:

“According to a 2020 study, between 12 and 15 percent of American adults over 60 complain of hip pain. A steroid injection to treat this pain is often the first line of defense after conservative treatments have failed to work.

But for many people, this isn’t an effective solution. For one, steroid injections aren’t a long-term treatment, and many patients need continued shots over time to experience pain relief. Also, this treatment can potentially cause many concerning side effects. These may include:

• Infection
• Allergic reactions
• Increase in blood sugar
• Weakened tendons and ligaments
• Cartilage damage
• Nerve damage
• Thinning of nearby bones”

The second line for non-surgery intervention is strong NSAIDS. You know why that’s out of the question, right? I have CKD, possibly even caused by NSAIDS. Then there’s physical therapy. I did try that, but it was so painful that the therapist and I agreed it wasn’t doing me any good. I really need that appointment.

Until next week,

Keep living your life!

aHus is …

When I first stumbled upon this word, I thought it might have something to do with marriage since the initial syllable of husband is hus. According to Vocabulary.com, 

“The word husband comes from the Old Norse hūsbōndi, where hūs meant house and bōndi meant dweller.” 

But then, I looked up aHus. Was I ever wrong in assuming this had to do with a house. I turned to my trusted favorites to see what I could find out about this word I hadn’t heard before, starting with the American Kidney Fund: 

“aHUS (atypical hemolytic uremic syndrome) is a very rare disease that causes tiny blood clots to form in the small blood vessels of your body. These blood clots can block blood flow to important organs, such as your kidneys. This can damage your kidneys and lead to kidney failure.” 

I’m pretty sure we all know what atypical and syndrome mean. Just in case you forgot, uremic means of or about the urine. And hemolytic? That means blood (hemo) and lysis (rupturing). Or in this case, “rupturing of the red blood cells and the release of their contents into the surrounding fluid.” Thanks for helping us out here, Wikipedia. While this was the most reader friendly definition I could find, keep in mind that anyone can edit a Wikipedia entry. 

So, we’re back in the realm of rare diseases. I’d like to know what causes this particular rare disease. Since it is a rare disease, I went to GARD’s website for information about how one gets this disease. By the way, GARD is the new website for Genetic and Rare Diseases and is part of National Center for Advancing Translational Sciences. That’s part of the U.S. Department of Health and Human Services’ National Institutes of Health. 

“It can occur at any age and is often caused by a combination of environmental and genetic factors. Genetic factors involve genes that code for proteins that help control the complement system (part of your body’s immune system). Environmental factors include certain medications (such as anticancer drugs), chronic diseases (e.g., systemic sclerosis and malignant hypertension), viral or bacterial infections, cancers, organ transplantation, and pregnancy. In about 60% of aHUS, a genetic change may be identified. The genes associated with genetic aHUS include C3, CD46 (MCP), CFB, CFH, CFHR1, CFHR3, CFHR4, CFI, DGKE, and THBD. Genetic changes in these genes increase the likelihood (predisposition) to developing aHUS, rather than directly causing the disease. In most cases, there is no family history of the disease. In cases that do run in families, predisposition to aHUS is inherited in an autosomal dominant or an autosomal recessive pattern of inheritance.” 

Uh-oh, did you notice ‘organ transplantation’ as one of the environmental factors which may cause this disease? And ‘chronic disease’? That makes it even more important for us to know how to recognize if we have this disease. Well, how do we do that? 

I went to the site called aHusNews to see if they could pinpoint the symptoms. Sure enough, they could. 

“Often, people with aHUS will report a vague feeling of illness, with non-specific symptoms that may include paleness, nausea, vomiting, fatigue, drowsiness, high blood pressure, and swelling. 

There are three hallmark symptoms that define aHUS: hemolytic anemia, thrombocytopenia, and kidney failure. 

Symptoms can appear at any age, though it is slightly more common for them to first appear in childhood rather than later on in life. Adult-onset aHUS is more frequent in biological females than males, whereas childhood-onset disease affects both sexes equally.” 

Is that how it’s diagnosed, I wondered. A different site, called Ahus.org was helpful here.  

“…. After initial blood tests, the hospital may conduct Creatinine and BUN tests and may (or may not) reach an initial Diagnosis of atypical HUS. The flu like symptoms … will continue to worsen when episodes are active. At this point, kidney function may begin to fall, often quite dramatically. Other organs sometime experience problems in some cases. Quite often, seizures have been reported, along with other neurological issues. Sometimes gastronomical problems occur as well. 

During an extended atypical attack or episode, the tell-tale signs of aHUS are very obvious. Hemoglobin levels may fall to 6-7, when normal levels should be 11-13: Hematocrit levels may fall in the low 20s, when normal levels should be in the mid 30s. Creatinine and BUN levels start to rise, characteristics of failing kidney function. Blood Pressure will become a nagging, recurring problem. Diarrhea and vomiting may also be present (sometimes that occurs with the initial onset, at other times it occurs later) …. 

TRIGGERS VS. THE CAUSE 

It is important not to confuse ‘triggers’ of atypical HUS with the root cause. In normal life, many of us get colds, the flu, infections, and the body’s immune system deal with those properly. In aHUS, a person may get a cold, and it triggers a full blown aHUS episode. This occurs simply because the body’s immune system is not reacting properly to the event.” 

Photo by Andrea Piacquadio on Pexels.com

The site mentions other specific tests that may be done to diagnose aHus. 

All this is worrisome. Is there, perhaps, a cure? No, there isn’t. This is a lifelong disease, but there are treatments available. Our old friend WebMD explains: 

” The FDA has approved two drugs to treat aHUS: 

Eculizumab (Soliris) 

Ravulizumab (Ultomirus) 

Both drugs are monoclonal antibodies. These are human-made proteins that act like natural antibody proteins in your body. They attach to other proteins called antigens. Once they attach, they tell your immune system to destroy cells with that antigen. 

Eculizumab can increase your blood platelet and red blood cell counts. If you take it early enough, it can also reverse any kidney damage you have. 

Your doctor will give you eculizumab by injection in their office. You may have side effects from the drug…. You can also get ravulizumab as an injection. Common side effects include high blood pressure, headache, and cold symptoms. You could also have digestive system problems such as diarrhea, nausea, and vomiting. 

Eculizumab and ravulizumab are a type of drug called complement inhibitors. These kinds of drugs may carry a risk of getting meningococcal disease. The CDC suggests people taking them get a meningococcal vaccine. Your doctor may also suggest you take antibiotics to help prevent meningococcal disease. 

Besides eculizumab and ravulizumab, you can also treat the symptoms of aHUS with plasma therapy. Plasma is a liquid portion of your blood that takes important nutrients, hormones, and proteins throughout your body. 

When you get plasma therapy, you may either have a plasma infusion or plasma exchange. 

In a plasma infusion, a doctor puts plasma from a donor into your body. In a plasma exchange, a doctor filters plasma parts out of your blood and replaces them with donor plasma. 

If your kidneys don’t respond to treatment, you may need kidney dialysis or a kidney transplant.” 

Now you know, whether you wanted to or not. I’m sorry. 

Until next week, 

Keep living your life! 

Does Coffee Count?

We all have water guidelines. Those on dialysis need to keep it down and those who aren’t need to keep it up. For example, my nephrologist suggested 64 ounces per day. That’s the equivalent of eight glasses of eight ounces each. To be honest, I use a water bottle that has the ounces marked on it. It’s just easier. 

Photo by Ivan Samkov on Pexels.com

Yet, eight ounces is not right for everyone. The National Kidney Foundation makes several recommendations: men usually need about 13 ounces while women need nine; and using their own words: 

“A common misconception is that everyone should drink eight glasses of water per day, but since everyone is different, daily water needs will vary by person. How much water you need is based on differences in age, climate, exercise intensity, as well as states of pregnancy, breastfeeding, and illness.” 

Umm, why do we need water anyway? The Southeastern Massachusetts Dialysis Group tells us as chronic kidney disease patients [pre-dialysis also despite the group’s name], 

“Water helps your kidneys remove waste from your blood. Your body excretes these wastes and excess fluids in the form of urine that travels to your bladder before leaving your body. Water also helps keep your arteries open so that your blood can flow freely to your kidneys. This blood delivers oxygen and nutrients that help your kidneys function. Dehydration makes it more difficult for this delivery system to work. 

Mild dehydration can impair normal bodily functions, including your kidneys. Severe dehydration can actually lead to kidney damage. Drinking fluids is the best way to avoid dehydration, especially when you work or exercise especially hard or in warm or humid weather. 

People with diabetes, kidney disease or other illnesses that affect the kidneys need to take in adequate amounts of fluid to keep their kidneys performing well. People with low blood pressure need to take in plenty of fluids to maintain kidney health, for example. Your kidneys act like filters to remove toxins from your body. To push blood through the filters, though, the blood has to be moving with force; in cases of low blood pressure, there is not enough pressure to force the blood through the tiny filters of the kidneys.” 

Notice, please that the word ‘water’ has been replaced by the word ‘fluid.’ 

Hot cup of coffee by Markus Spiske is licensed under CC-CC0 1.0

But wait a minute, I drink two eight-ounce cups of black coffee most every day. Coffee is mostly water, isn’t it? Does that count in my water – or fluid – allowance? Let’s figure it out. I went to Everyday Health for this information: 

“There are so many different types of coffee to choose from, and your personal preference will affect how much hydration you’ll get from your brew. Two main factors dictate how much hydration you’ll be getting: the amount of caffeine and the volume of the beverage. For example, according to Mayo Clinic, an 8-oz cup of regular brewed coffee contains about 96 mg of caffeine while the same sized cup of decaffeinated brewed coffee contains only 2 mg of caffeine. This means, while you’ll be getting about 7 oz of hydration from the regular coffee, you’ll be getting the full 8 oz of fluid from the decaf. Caffeinated instant coffee falls somewhere in between, with 62 mg of caffeine per 8-oz serving. Similarly, a 1-oz serving of espresso contains about 64 mg of caffeine, which gives it almost as much diuretic power as a full 8 oz of caffeinated coffee, but since that’s all packed into only 1 oz of fluid, you’re really not getting any hydration from a shot of espresso.” 

Wow! That means I’m getting 14 of my 64 ounces from my favorite beverage. I only drink water and the black coffee, but if I’m ill or having stomach problems, I will eat soup. Is that a fluid, too? 

My favorite dictionary, the Merriam-Webster, defines soup for us: 

“a liquid food especially with a meat, fish, or vegetable stock as a base and often containing pieces of solid food” 

Double wow! So even if I’m not that hungry and just have a cup of soup, there’s another eight ounces or so of liquid, or as I see it being called now, hydration. So now I’ve had about 24 of my 64 ounces of liquid [no longer just water and sometimes called hydration] requirement for the day. 

Hmmm, if soup counts as a liquid and coffee counts as a liquid [tea, too], what else does? Thanks to the American Kidney Fund’s Kidney Kitchen for the following graphic: 

“Examples of fluid: 

Ice 

Soups and stews 

Pudding 

Ice cream, sherbet, sorbet, popsicles, etc. 

Protein drinks (Nepro, Novasource, Ensure, etc.) 

All beverages (water, soda, tea, coffee, milk, nondairy milk, etc.) 

Jell-O® other gelatin products and gelatin substitutes (pectin, arrowroot powder, etc.)” 

Triple wow! So, if you get tired of water, water, water [I don’t.] to fulfill your fluid or hydration needs, look at the variety of foods you can have. Of course, if you have diabetes, you’d have to get the sugar free versions of these foods… and, please, no chemical artificial sweeteners. Sort of opens up the world of fluids, doesn’t it? [Notice I’m using the word ‘fluids’ or the word ‘hydration’ instead of the word ‘water.”] 

St. Joseph’s Healthcare, Hamilton has a bit more information for us: 

“Fluid is a liquid or any food that turns into a liquid at room temperature…. Fruits and vegetables naturally contain water. If consumed in moderation, fruits and vegetables should not contribute large volumes of water to your daily total intake of fluids. Therefore, fruits and vegetables do not need to be counted as part of your daily fluid intake.” 

I prefer to stick with my water and coffee but look at all the foods that have been made available to you. My favorite treat as a child was chocolate pudding. I remember the smooth, rich creaminess of it. My brother’s was orange jello. He said it felt cool going down his throat. I’ll be content with my memories. You go enjoy these foods. 

Until next week, 

Keep living your life!