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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.