Ask a Mentor

· First and foremost, not all dialysis patients are perfect, I definitely wasn’t. At some point, we all sneak in a fun snack like Lay’s potato chips, Goldfish crackers, or peanut butter with saltine crackers (those were my personal favorites). But of course, it always showed in my Wednesday lab draws, and Kristin, my dietitian, would give me that look, like: “What did you eat?!”

· I was taught that you can make better choices with natural phosphorus, good phosphorus! while staying on track with your phosphate binders. My go to was apples with peanut butter (natural peanut butter), but I would only eat half an apple and slice it up. Apples with PB gave me such a morale boost. Another favorite of mine was grapes and if memory serves me, 17 grapes equals one serving. (Thank you Kristin)

· I also made it a habit to meal prep and have snacks ready to go, like my apple slices or two hard boiled eggs a day. The eggs not only made me feel full but were also great on salads.

· I always carried extras: two packs of sugar-free gum and sugar-free Jolly Ranchers. Jolly Ranchers or any sour candy helped so much with my thirst. They saved me plenty of times, especially on hot summer days.

I had to lose 30 pounds to meet the BMI number to qualify for a transplant so I changed my diet to 95% fruits and vegetables, which worked and really helped with additional energy.

I made a deal with my wife, who was my primary caregiver throughout the entire process- she would make the appointments and deal with the insurance companies, and I would get myself to the appointments. This was a huge help!

I would have asked to speak to someone who had gone through the process so I could ask detailed questions without feeling like I was rushing to get the doctor to his/her next appointment.

Post-dialysis fatigue is extremely common and can have several underlying causes. Assuming that any anemia is under control, one of the best things you can do is to ensure that you keep your fluid intake within prescribed levels between sessions to avoid large volume shifts during dialysis which can really contribute to the problem.   If you are receiving center-based dialysis at the usual three times a week frequency,  have you considered home dialysis or peritoneal dialysis? There is nothing magical about thrice-weekly dialysis, and daily home-based sessions (or PD) may keep you more stable and result in less fatigue and better quality of life for you.

Taking meds on a complex schedule can be tough. Use a weekly pill organizer to sort doses ahead of time. Set clear phone alarms or try an app like Medisafe to remind you. Link meds to daily habits, like breakfast or brushing your teeth, for consistency.

I presume you may be taking tacrolimus and mycophenolate which are both usually dosed twice a day. You may have several others that are dosed once a day (prednisone for example). This isn’t really all that complicated a schedule— especially because it isn’t really critical that the meds be dosed exactly 12 hours apart. 

I have a small tackle box kind of thing that has all my drugs separated in individual compartments. It isn’t that hard to recognize which are which, but you can always put the twice-a-day meds in adjacent compartments.  

I keep my drug box by my toothbrush. I take the full round first thing in the morning (usually around 6:30-7:00 for me).  I will then wait until 7:30 or 8:00 (or later) to have my coffee and breakfast.  I then take the evening drugs before bed but at least 2 hours after dinner and any snacks. Usually around 9:00 pm for me, but sometimes later. Putting the box next to my toothbrush makes it easy to remember to take them because I do both at the same time. The habit will come and soon you won’t have to think about it. Plus having all your drugs organized in a small, compartmented box makes it easy to travel — just place the box in with the rest of your toiletries. 

I set a specific hour to take my meds in the morning and evening.  As an example, I take my morning meds between 8-9am.  My evening meds between 9-10pm.  Also try to keep your meds in a location that you can see.  I have mine on a desk in the living room not far from my TV which hangs on a wall.  I have a clock on the wall above my desk.  

I use my iPhone's alarm and calendar features. I have alarms set for 6 AM, 12 PM, 5 PM, and 9 PM. For doctor appointments, I add them to my calendar, which automatically provides reminders the day before and one hour prior to the appointment. This system works very well for me.

Feeling freaked out about lifelong medication is totally valid, but there are ways to ease the mental burden. Try reframing meds as tools for a healthier life, building a routine, connecting with others, or focusing on what you can control. 

Believe me, it just isn’t a big deal and you will get used to it.  It will become a habit—like brushing your teeth.  You will do it almost mindlessly without thinking twice about it.  When you really consider it, it’s such a small price to pay for being able to live a relatively normal and healthy life! 

I look at it as part of my life.  I can’t speak for you specifically, but in my opinion it develops into a habit. Once that happens,  it becomes just part of your daily routine in life.  I take 15 meds every day, some of them 2X a day.  I don’t even think about it, I just do like breathing in and out…

Mentally, I would just say to myself in your case,  this medication will keep me living a good life.  I can’t tell you how long it will take but my guess is that within weeks or a few months it will become part of your daily routine!

I feel like the gift of life is so precious. It’s not hard to take the medicines at all for me anyway.

Celebrate what your body does, like handling this diagnosis. Wear clothes that make you feel great, try gentle movement like yoga, and connect with CKD support groups online. Practice kind self-talk, pamper yourself with small self-care rituals. Do what feels good to you. 

If you already work out, continue!

If not, develop a work out routine that works for you. Taking a walk, a light weight exercise, dancing to favorite songs or music.  The key is make it a fun thing to do. If you have a dog, taking them out for a 15-20 minute walk.  Do it 3-5 days a week.  

Singing along to favorite songs.  Cooking an easy to make meal.  

I got diagnosed with my CKD from my inherited PKD in 1993.  In the beginning, I made some minor adjustments,  I continued to work, I made some diet changes but not drastic changes.  Fortunately, I received a transplant in 2001.  In 2011, I received a 2nd transplant.  Both from living donors that were friends of mine.

The point is CKD is not the end and imo, you don’t treat it  like that.  Yes, you make changes and a key advice is get a good Nephrologist.  If you live in San Diego area, I highly recommend Balboa Nephrology Group.  

That’s a hard one, but don’t think that it’s just you with chronic kidney disease. It’s everyone.  It’s part of aging. You have to love yourself first and then if you have a partner, a husband, wife, whatever it may be remember they love you. All you can do for your body is eat right, fruits, vegetables, lean meats, exercise, see your family, friends, find a hobby, walk your dog, play with your kitty….. whatever your passion or hobby is and remember that you are loved by all of those people. 

Things will change. You’ll find yourself adjusting to a new “normal.” I’ve been living with kidney disease for almost 30 years, and even after all this time, there are still moments when it feels overwhelming. When those moments come, I remind myself to slow down and take it one day at a time—sometimes even one hour at a time if that’s what I need.

 One thing that really helps me is making lists. I jot down questions I have for my healthcare team or topics I want to learn more about. It gives me a sense of focus when everything feels a little out of control.

Over the years, I’ve learned that the more I understand about my health, the more empowered I feel. Being informed helps me work alongside my care team as a true partner—and that makes a world of difference on the hardest days.

Freaking out is a normal reaction.  Not sure what your kidney disease is but in my case, mine was a heritable disease.  But regardless, the diagnosis does cause an initial reaction like you had.  

First if not already done, have a discussion with your Doctor, hopefully a Nephrologist.  Go over the next steps going forward.  If married or in a relationship, discuss with your partner, family or good friends.  

The key is to determine the next steps going forward.  If comfortable, recommend finding a Mentor from ReMend that can provide answers and support to your journey going forward.

When my doctor suggested I do peritoneal dialysis at home every night, I knew immediately that wasn't the right fit for me. I really value having a sense of normalcy in my life and being able to get out of the house each day – like I have a part-time job three days a week for three hours.

Of course, everyone's different, and peritoneal dialysis works well for some, but it just wasn't the path for me. I don't think I was overwhelmed by the idea; I was simply saddened by my kidney failure. However, I'm incredibly fortunate to have a strong support system, including my kids, grandkids, neighbors, friends, and all the wonderful people at the dialysis center who have also become friends. In fact, after dialysis, I often grab my neighbor, and we head out for lunch!

My kidney failure diagnosis was a complete shock to me. At the time of diagnosis, I was down to 5% kidney function and needed to begin dialysis immediately. I spent a week in the hospital, and the first couple of days were so depressing. I believe it was my third day when I took a hard look at my situation and realized I had two choices: to continue being depressed about my situation, or accept my new diagnosis and take control of my health to live my best life. I chose to accept my diagnosis and live my best life as a dialysis patient and as a kidney transplant recipient. A kidney failure diagnosis does not mean your life is over!

I really enjoy following a plant-based diet. I don’t think it’s necessary for everyone, but I do believe the key to eating well is meal planning. It’s one of the most successful ways to stay on track and make sure you’re giving your body what it needs.  Playing around with how you cook and season your vegetables also makes a big difference—it keeps meals interesting and satisfying. I love my air fryer and InstaPot!

One trick I’ve found helpful is using ChatGPT for meal planning. I’ll type something like, “I need 5 days of meals: breakfast, lunch, and dinner. Low phosphorus, plant-based, with a $60 budget for 2 people at Trader Joe’s.” It gives you a full shopping list and recipes, taking all the guesswork out of it.  I also like to make extra portions and freeze them, so on the days I’m not feeling my best, I can just heat something up quickly.

Meal planning not only makes daily life easier, but it also helps you better control the foods you need to avoid—especially since your dietary needs can change throughout different stages of dialysis.

During my time on dialysis, I had to cut out some of my favorite foods. It's a sacrifice I was willing to make to remain healthy. The foods I missed most were pizza and ice cream! I worked closely with the dietitian at my dialysis clinic to understand what foods I needed to avoid and how eating those foods negatively affected my bloodwork and my health. It took time for me to figure out what I can and cannot eat, but once I got that right, I noticed my blood levels started to stabilize, I started feeling much better, and those dialysis sessions were not as hard on my body.

To answer your question about drinks, yes, you do need to be careful of what you drink and how much you drink while you're on dialysis. Like your food diet, work closely with your dietitian to understand what to avoid and how much fluid you can take in daily. 

I haven’t started dialysis yet, but I’m getting very close. Living with a kidney transplant for 19 years has taught me the importance of being thoughtful with my time. Because I struggle with fatigue from Lupus, I’ve learned to schedule everything—family time, social time, even quiet time for myself. Spreading things out helps me move through each day with more comfort and less stress. It’s one of the ways I’ve learned to take care of both my body and my spirit.

When I started hemodialysis, I had to work around my full-time nine-to-five work schedule. I found a dialysis clinic that accepted my insurance and had a 5 am opening. I could get in at 5 am and do three hours of dialysis, and still make it to my work by 9 am.

I suggest you figure out a time of day that you can fit dialysis into your busy schedule, then work with your medical team to locate a dialysis clinic that can has an opening. 

While on in-center [hemodialysis] traveling was easy as I coordinated my travel plans with my social worker. I would let her know the dates and destination, and the clinic would be ready for me. The downside was I was required to give as much notice as possible, even up to 30 days. Also, visiting a clinic I hadn't been to before, I usually would stop in or call ahead of time to know the rules of that clinic, such as bringing in food and drinks, TV stations, headphones, etc. When I switched to PD, traveling was different than it is now. Scheduling supplies to be delivered still went through the social worker, but ALL supplies, including the machine, however, I believe now there is a suitcase for the machine that does not count as a luggage piece.

There is good information regarding traveling while on dialysis.  A number of cruise lines have hemo dialysis equipment on board in the Ship’s Medical Center.  You just need to advise them when making your reservations.  Regarding Peritoneal dialysis, you can have your machine and supplies sent to where your ship departs to be placed in your cabin.  Regarding TSA, they do have special lines for taking medical equipment on the plane or you can have it checked as baggage.  You should check with the airline you are traveling on for additional information and costs.

Traveling on dialysis can be surprisingly manageable. When I went to Phoenix for a transplant evaluation, my dialysis center easily arranged appointments for me there. It was quick and easy. While I haven't personally traveled with home dialysis equipment, I understand that with the proper documentation, getting supplies through TSA screening is generally straightforward.

I traveled extensively during my nine months on dialysis. While on hemodialysis, I flew to Seattle. At that time, the social worker at my dialysis clinic coordinated with a clinic in Seattle to schedule a session. I arrived, and they had all the necessary information to dialyze me correctly. It was painless and straightforward for me. 

Traveling with my PD machine and bags was also easy. I simply chose hotels that I believed were cleaner than the average ones.

I did not have a fistula. I had a silicone graft. I am unsure if those re used any longer, but I had no problems with it. It looked like a large vein.

I had an AV fistula placed in 2002 as a precaution while I was preparing for dialysis. Fortunately, I received a kidney transplant before I ever needed to use it.

The surgery itself was straightforward and not particularly painful. My vascular surgeon recommended doing it well in advance since fistulas need time to mature before they can be used for dialysis.

For years after surgery, you could actually hear and feel a “whooshing” sound from the blood flow through the fistula — which was kind of interesting at the time! Eventually, because it was never used, the blood flow naturally slowed down and the fistula essentially closed off on its own.

Today, all I have is a small scar. They typically do not remove or "reverse" a fistula unless it’s causing complications. Otherwise, it can safely remain in place even if it’s never used.

Getting a fistula put in either arm is a straightforward procedure done by a Vascular Surgeon.  You are sedated during the procedure.  It takes a few days to heal but my experience is that it is not that painful.  I had mine in for 16 years.  Only used for about 3 years. My one son is on home hemo and has no issues with inserting the needles. I had my fistula removed in 2022, I could have had it reversed sooner, but it never bothered me, so I chose to keep it intact.  When I did have it removed, it took a week for my arm to heal.

I received a dialysis graft (a tube since my veins were too small) in my arm over two years ago. The surgery itself was painless, just a little soreness afterward. While needle insertion for dialysis can hurt – some spots more than others – numbing cream with saran wrap is an option. Personally, I haven't used it. Living with the graft is fine; you get used to it and are grateful for dialysis. Regarding removal after a transplant, my surgeon said he would remove mine, but it's something you need to discuss with your doctor, as my girlfriend who's had multiple transplants still has her fistulas

The only part that hurt was the initial insertion of the needle. My mindset was that this dialysis was keeping me alive, which made me grateful that I could even undergo dialysis. That mindset helped me through all the difficult moments of dialysis.

I chose PD primarily due to not being talked to about home hemo. I chose PD for several reasons: It gave me flexibility and allowed me to spend more time with my family. It was more gentle on my body, and I felt better. I dialyzed every night so my blood was cleaner. The renal diet and fluid restriction were not as strict. I felt that my native kidneys worked every day, so dialyzing each day seemed more in line with my body. 

My situation is similar. I haven’t started treatment yet, but I’m leaning toward peritoneal dialysis (PD). It seems like the best fit for me—I’m active, and it appears to be a manageable option to set up independently at home. I’ve spoken with several others about their experiences, and my nephrologist has also recommended PD as a good option for my lifestyle.

I have had both types of dialysis  I had a choice.  In 2001, I chose peritoneal dialysis, this was prior to my first kidney transplant.  I chose it because I could do it at home.  In addition, we had a very large BR with an adjoined office where I could keep the supplies.  If you don’t have enough space for the supplies, I would not opt for PD.

In 2004, after having my PKD kidneys removed, I chose hemo dialysis at the UCSD Hospital in Hillcrest.  I found that to work out well for my Wife and I.  Fortunately, my transplanted kidney started working and I never had to go on dialysis and received my 2nd Transplant in 2011 which to this day is working quite well.  My recommendation is the you look at Home Hemo.  My middle Son is on Home Hemo and doing quite well.

My doctor initially suggested peritoneal dialysis, but due to scar tissue, it wasn't an option. Honestly, I preferred center-based hemodialysis. I didn't want my home to feel like a medical facility with all the equipment required for home dialysis. Also, going to a center three times a week provides valuable social interaction and friendships, which I appreciate. While you can be trained to self-cannulate for home hemodialysis or have a helper, doing center-based HD alone is definitely feasible and offers a social outlet.

I did nine months of dialysis before I received a kidney from my brother. The first three months were in a hemo clinic, then the last six were home PD. I liked PD because it would allow me to be more active and healthier. Fortunately, I lived with family and that was not a barrier to me getting approved for home PD. I can say with confidence that I was fully alert and aware of how to take care of myself and address any issues that have arisen during my PD sessions. The dialysis machine manufacturer had a 24-hour hotline that helped me when my alarm sounded off in the middle of the night. I would highly recommend PD to any patient that is active, alert and confident in themselves, and most importantly, their doctor agrees they are candidate for that treatment.

When I transplanted in 1997 and 2003, matching was based on a 6-antigen match. My first one was 2 out of 6 and the second one was a 6 out of 6. There wasn't a paired exchange program at that time either.  I believe now the antigen match is a thing of the past.

Sometimes, a willing living donor isn’t compatible with the person they hope to help. Compatibility depends on factors like blood type and antibody levels. If your potential donor isn’t a suitable match for you, there’s still a promising option available: Paired Kidney Exchange. Here’s how it works:

• Imagine Person A needs a kidney and has a donor (Donor A), but they aren’t compatible.
  At the same time, Person B also needs a kidney and has a donor (Donor B), but they’re also incompatible.

• If Donor A is a match for Person B, and Donor B is a match for Person A, the transplants can move forward as a “swap.” Each donor gives their kidney to the other patient. Both recipients receive a living-donor transplant—just not from their original donor.

This approach can also grow into larger donor chains, where multiple donor-recipient pairs are matched through a coordinated system. These chains significantly expand access to transplants for patients across the country.

A match means blood type basically.  That is the first thing they will determine. If a match, they will do some other tests and then schedule the transplant.  Your kidney Doctor will have you scheduled with a Transplant Coordinator along with your friend who will see a different Transplant Coordinator.  I highly recommend Sharp/Balboa Nephrology.  But, your Kidney Doctor you see at your place of dialysis should be able to point you in the right direction.

A donor's kidney must be compatible with you. Similar to blood donation, your potential kidney needs to match your blood type. Additionally, your body should not have any strong genetic markers that could react negatively to your donor’s kidney. Furthermore, the potential donor must be healthy enough to live their life with just one kidney. Your transplant team will conduct a simple blood test to check blood compatibility, followed by a more comprehensive blood test to analyze your genetic markers. If everything looks good, they will perform a physical examination on the potential donor to ensure they are healthy enough for the procedure. In summary, simply introduce your potential donor to your transplant team, and they will handle the rest.

Your immune system is a wonderous collection of white blood cells and other cell types that interact with each other to defend you against invasion by microbes, viruses, fungi and toxins. Without it, you would quickly succumb to these invaders. This defensive army is on constant patrol for “foreign” molecules  collectively known as ‘antigens’ – proteins, sugars, and other substances that are not supposed to be there, and it attacks them with a variety of weapons including T-cells that can directly destroy foreign tissues, and B-cells that make antibodies which attach to antigens and mark them for destruction.

As you probably remember from your high school biology, all tissues and organs are made of cells.  And like icebergs floating in polar seas, these cells have thousands of different kinds of molecules embedded in their surface.  These are mostly proteins although some of these proteins have other kinds of molecules like sugars or lipids attached to them.  They all have a function and their presence is in part what differentiates, say, a blood cell from a kidney cell, from a liver cell, etc.  These “cell surface” proteins are encoded by our genes which, of course, are inherited from our parents.  Now, these proteins can differ slightly between individuals because of sequence differences in the DNA of the genes that encode them.  These genetic variations, called “alleles,” are collectively what makes us individuals who differ from each other.   But the immune system did not evolve with transplants in mind and unfortunately, many of those genetic differences lead to variations in antigens that can be recognized as foreign and attacked. Unless we are dealing with transplants between identical twins, there are many such antigenic variants that differ between the donor and recipient.  However, there are two that are particularly important:  The ABO blood group antigens and the HLA antigens.   

The ABO antigens are what make up the “blood types” that we are all familiar with.  Although they are often called blood group antigens because they are found on red blood cells and are of critical importance when receiving a blood transfusion, the ABO antigens are also found on other tissues as well – including kidney tissue.  They are actually short chains of sugar molecules called “oligosaccharides” that are affixed to cell surface proteins.   People with an A blood type have at the end of the chain the “A sugar” (OK, N-acetyl galactosamine if you must know) and recognize the “B-sugar” (galactose if you’re a geek like me) as “foreign”; people with type B blood have the B-sugar at the end of the chain and recognize the A sugar as foreign; people with type AB blood have both sugar types and recognize neither as foreign, while people with type O blood have neither sugar and recognize both as foreign.  The reason why the ABO antigens are so critical to both transfusion and transplant is that these same sugar antigens are also present on many common bacteria that inhabit our gut and other tissues.  Our immune systems encounter them frequently and continually produce large quantities of antibodies in response.  So if you are, say, of blood type O, you already have antibodies to the A and B antigens – even before you receive a transfusion or a transplant. If you now receive a transfusion of an incompatible blood type, those antibodies will attack the transfused cells, causing them to clump together and clog up blood vessels and capillaries leading a what’s called a “transfusion reaction” which can be fatal.  Similarly in the case of an organ transplant, those same antibodies will attack the A or B antigens on the organ and quickly lead to its destruction – a phenomenon called “hyperacute rejection.”  So the first component of “matching” is to ensure ABO blood type compatibility.

The next order of business to determine compatibility involves the “Human Leukocyte Antigens” or HLA.  These are group of cell surface proteins that are actually important parts of the immune system.  We need not go into their function here but it is important to know two things.  First, these are extremely potent antigens and provoke a very vigorous response. When the immune system rejects an organ, it is usually the HLA antigens that are the main target.  There  are 12 HLA genes closely linked to each other, but three of them are particularly relevant to kidney transplantation:  HLA-A, HLA-B and HLA-DR.  Second, each one of these genes has many variants (alleles) that lead to subtle differences in the protein structure that can provoke an immune response.  Most people inherit different variants of all three genes from each parent meaning that they have six different variants – two for each gene one from mom and the other from dad.   In general, the more matches between the donor and recipient, the better for the long-term survival of the transplant, and you may hear people say they have “6 out of 6” matches, or “3 out of 6 matches”  (usually because their donor was a parent or sibling). However, most transplants between unrelated donors and recipients will have few or no matches at all (I myself have a transplant from my brother-in-law with 0/6 matches).  Modern immunosuppressive drugs  can prolong the survival of such mismatched transplants, but it may require more intense immunosuppression and more frequent monitoring for rejection.  There are many other factors that affect long-term survival of the transplant as well – including age of the donor, whether a living or deceased donor, and the overall health of the recipient, the length of time on dialysis prior to transplant, etc. While HLA matching is not essential for transplant eligibility, what IS critical is to ensure that there are no pre-existing antibodies in the recipient to the HLA variants of the prospective donor.  That can occur because of prior transplant, transfusion, or pregnancy.  Even some viral infections can give rise to anti-HLA antibodies.  Therefore all potential donors and recipients are “cross-matched.”  There are a number of ways to perform cross-matching.  Often, the blood cells of the prospective donor and recipient are mixed in a test tube to make sure that there is no immune reaction on the part of the recipient to the prospective donor’s blood cells (which also express HLA antigens.)

So there you have it:  Matching basically determines whether the donor and recipient have compatible blood types, and if the recipient has any pre-existing immune reactivity against the donor’s HLA antigens.  Finally, the degree of HLA mismatch is determined, not as a precondition for transplant, but to give the nephrology team an idea of the level of immune suppression that will likely be necessary to forestall rejection and keep the new kidney healthy for as long as possible.

Keep in mind however, that most centers do “paired transplants” such that even if your donor is not a match for you, there may be another patient for whom he/she IS a match and who has a potential donor in the same situation — not a match for them, but a match for you. 

The medicine you are probably referring to is tacrolimus – a drug that inhibits certain white blood cells called T-cells, a critical component of your immune system, from attacking your transplanted kidney. Without some inhibition of these cells, they would quickly destroy (reject) your new kidney.  Hence, all transplant patients need to take anti-rejection medications, and most take tacrolimus – usually in combination with others like CellCept or Myfortic, and prednisone.

We don’t need to get into the mechanism by which tacrolimus inhibits T-cells but, like all medicines taken by mouth, tacrolimus must first be absorbed from the gut and get into the blood stream where it can diffuse into target tissues such as those T-cells.  And like all drugs, tacrolimus gets metabolized over time and eliminated from the body, mostly either in the urine or, as is the case for tacro, in the feces. If you were to make a graph of drug blood concentration over time, it would look like a series of waves – with the peak of each wave occurring shortly after each dose and the trough of each wave occurring just before the next dose. The rate of elimination varies from one drug to the next and is largely what determines the interval between doses –i.e., how often you need to take it.  When taking any medicine chronically, the goal is usually to maintain the blood concentration (called the “exposure”) within a particular range – if it gets too low, there is not enough to produce the desired effect; too high, and there can be toxic side-effects. This “Goldilocks” concentration or exposure range is called the “therapeutic window.”

Now, tacrolimus is a rather difficult drug to dose. First of all, it has a relatively narrow therapeutic window, so it is easy to under-dose or over-dose. Second, its rate of metabolism and elimination or “half-life” (the time it takes for the blood concentration to go down by 50%) is unusually variable from one patient to the next. The average half-life of tacrolimus is about 12 hours, but it can range between 3.5 to 40 hours as some people metabolize it very quickly and others more slowly. This is why in the days immediately after your transplant, your blood is drawn frequently to measure tacrolimus levels and the dose is adjusted specifically for your metabolism in order to maintain the blood concentration within the therapeutic window. Finally, the absorption of tacrolimus from the gut (the fraction of the dose that actually gets into the circulation, called the drug “bioavailability”) is highly affected by the presence of food in the gut. For a given dose of tacrolimus, bioavailability is reduced by 25-33% if taken with or immediately after a meal relative to an empty stomach.  Because the therapeutic window of tacrolimus is so narrow, you can see how taking the drug after a meal can lead to significant under-exposure. As well, certain foods like grapefruit contain natural compounds that inhibit an enzyme (called CYP3A4) responsible for metabolizing tacrolimus.  Eating grapefruit can therefore slow the metabolic elimination of tacrolimus and lead to over-exposure. By the way, there are constituents of marijuana that also inhibit this enzyme and can lead to tacrolimus over-exposure, which is why you should also avoid cannabis while on tacro).

For most people taking the standard formulation of tacrolimus, the drug needs to be dosed twice a day in order to maintain the exposure within the therapeutic window and keep those T-cells from attacking the transplant while avoiding toxic side-effects.  There are however a few branded formulations of tacrolimus (e.g. Envarsis® and Advagraf®) that are designed for extended release (slow absorption) and are dosed once a day.  They are quite expensive and usually not covered by insurance which is why they are not typically prescribed as standard of care, but once daily dosing is certainly more convenient – especially given the food effect issues with tacro.  If this is of interest to you, you should talk to your nephrologist about it.

Answer coming soon.