I've had four transplants and I am being evaluated for a fifth, but it's likely a long shot because three of my transplants have been open abdominal surgeries, which is just really hard on the body. But we'll see. I still - amazingly - have a zero PRA, so I look like a good candidate on paper anyway. That and a couple of my transplants lasted quite some time - I had my first transplant in 1974 at the age of 8, but I caught an infection about two months after and just could not keep it and fight the infection, so it lasted only a year; second was 1975 and lasted 14 years ; third transplant was in 1989 and lasted 15 years; fourth was in 2004. I'm currently down to about a 19 GFR with a 3.4 creatinine, but I'm only on a modest renal diet and no dialysis yet. Things could be worse.
Of interest, I do know of one person who had seven transplants, but I suspect that was a very unusual case.
I just did the math on your transplant wait time - less than 1 year per, and the only way you could be getting donor kidneys at that rate would be having a veritible team of live donors who are at your beck and call. This is certainly an envious situation and not one that is representative of the the population of kidney failure patients at large.
While the requirements for receipients are stringent, the requirements for donors are even moreso, as the medical profession's Hippocratic Oath, requires, "First Do No Harm". The donor must be in nearly excellent health so as not to face some diminishment of quality of life or health as the result of the loss of a kidney.
I have read of instances where donors end up with increases in creatinine as the result of their dontation and are declined health insurance and/or experience increased premiums because of the decline in kidney function and/or the diagnosis of kidney disease.
Each successive transplant typically results in the development of more antibodies, whose presence makes donor matching all the more difficult for successive transplants and donors.
Your situation is certainly an unusual one, but one that is reflective of the varation that is present in individuals and medicine.
Yes, admittedly I have had a number of readily available kidney donors. The first two organs came from my mom and dad respectively. Now, my third transplant organ came from cadaver, but it was done back in 1989 and the UNOS list was run a little differently back then. There was a significantly greater problem with kidney stabilization and rejection than there is now, particular for patients with higher PRAs. So, the UNOS selection team put list patients in two groups: group A were those consider high rejection risks and group B were low rejection risks. When an organ came up, the UNOS team would match it first to someone from group A, but would also pull someone from group B as a backup because the group B people could pretty much automatically take any organ that was available. Group A then ended up being the "main patient list", as it were, and contained the majority of patients. I, for some unknown reason, have a very unusual immune system - my body does not make memory cells - reactive antigens. Consequently, after two transplants I still had a 0 PRA, so I was put into the low rejection risk category. And back then, the group B list was very short, so I ended up being called as a backup after seven months and then ended up with that kidney. With improvements in immunosuppression therapy and drug balancing, patients are no longer selected that way.
And yes, you are correct about the donor health requirements, among much else. My teams have all been quite stringent about the health of the donors. My last donor - a friend from high school - now has a slightly elevated creatinine level and it shows up as such when she goes in for her physicals and other checkups. Outside of that, she's doing fine though and insists she'd do all again knowing what she knows now (for instance, her recuperation was pretty rough).
So we'll see. I'm not sure what's going to happen down the road - whether I'll be approved for a 5th transplant and, if I am, whether I'll go through with it. While the energy level, independence and lack of diet is fantastic, the surgeries and recuperation are not easy. And even getting back into the routine of clinic visits takes adjustment. And then there's the inevitable decline, which really is psychologically trying. But, we have to do something I suppose...
Thanks for the information rich reply. I've been listed for just over three years for a cadaver kidney and am on two different kidney transplant program lists. My wife is the same blood type as I and could very well be a live donor, though having both of us recuperating from the surgery is not something I relish.
Before I started HHD training and with it hemodialysis, I had already be listed for a kidney transplant and was leaning in that direction. After nearly 20 months of HHD, I find myself quite a bit more reluctant to consider a transplant than I would have expected. This is because I have assimilated HHD into my daily life in such a way that it imposes only minimally on my active work and play life style. This would not be possible without the daily assistance of my spouse/care partner and the support of my expert HHD medical team.
I have viewed the HHD process as one that can be continuously improved through the reduction/elimination of waste and variation. Any activity that engages you several hours a day, 5 days a week, provides all manner of opportunity for improvement. It has been a challenge at times. but a challenge that my team has faced with enthusiasm and has prevailed. I enjoy many aspects of the routine and the repetitive tasks that must be performed correctly and consistently to assure a successful treatment.
Along the way, I have developed an extensive assortment of enhancements and process improvements that assure repeatability and minimize variation. Having control over my health through the treatments I conduct is remarkably empowering. Seeing excellent lab results every month is rewarding. Being able to do all that I did before HHD greatly diminishes the impact of the nearly 20 hours per week that I must "schedule" to fulfill the requirements of the modality.
Because HHD has turned out to be a good gig for me, the unknowns associated with transplantation, in spite of the freedoms that would come from that transplantation, make me hesitant. If and when I get that call, I very well may say, "give the kidney to the next person on the list, I'm doing fine with my OE parts."
Thanks for the info! I confess, I don't know much about HHD. It wasn't an option when I have done dialysis. I must say, dialysis was a bit of nightmare back when I did it in the 70s and 80s. It was all manual back then, so getting fluid levels right was a function of accurate eyeball estimation. Cramping, nausea, headaches, and blood pressure crashes were all really common. Needless to say, I have a bit of a phobia of dialysis even knowing how much it has improved.
I am curious though - I see where you say you are on it 5 days a week, but how long is each session? Where's your port and how does connecting to the system work? That is, do you have a AV fistula or have ports changed? And if you do have a fistula, do you connect to the machine yourself or does your wife stick the needles in? I ask because while I'm ok giving myself something like sub q Aranesp, after 40 years of immunsuppression therapy, my hands are not steady and I don't think my wife could put the needles in that I remember from my dialysis days.
I must say, I am really happy to see that its a minor inconvenience and a routine part of your life at this point. That's really cool. I can definitely understand your hesitancy with regard to unknowns of transplantation given your fulfilling life. Transplant certainly has it's share of issues. Problems that are a concern for most folks can be major issues for those of us with a transplant. As an example, I was in the hospital for a week with the flu and managed to get C diff on top of it due to my immunosuppression. And while the freedom is great, the thought of rejection or infection is ever present. So yeah, I would imagine that if you've got a good life, why fix what isn't broken?
I understand and respect people's decison about transplant, but as a twenty year kidney recipient of a living donor transplant, I recommend transplant to all dialysis patients. I was a transplant social worker at a transplant center in Michigan for twelve years and I LOVED IT. I was able to see how patient's lives were changed as a result of transplant. I am now a dialysis social worker working with people who are new to dialysis, been on dialysis for years, and people who are not sure about transplant. I find a joy in educating people about the treatment option of transplantation so they can become aware of what Davita feels is the best treatment option for ESRD.
If you are considering transplant and just not sure about it or you're comfortable with your dialysis treatments and feel 'why fix what isn't broken' then I recommend you ask your physician to talk with a few transplant recipients so you can obtain their personal perceptions of transplant. For me, it changed my life for the better.
So many questions that I've answered in scores of posts going back to early 2013. But then again, you are a very recent member with a join date of March 2014, and thus I will regale you with the particulars.
I've been conducting home hemodialysis since beginning the training for same on July 16, 2012. I went home in early September 2012 after completing HHD training with my care partner/spouse and began 5X weekly short daily treatments of 2 hr 42 min and 30 liters of dialysate, on a NxStage System1 Cycler and Pureflow SL dialysate maker, storer and pump.
In early October 2011, eight months before beginning HHD training, I had an arteriovenous fistula (AVF) placed in my right forearm. The anastomosis is at the wrist joint. During the early days of HHD training, I experienced a large number of infiltrations in the portion of the fistula being used for the venous site. I was sent to a vascular specialist whose specialty is fistulas. He performed a fistullogram (conscious - under mild sedation, me, not him) and detected a narrowing of flow near the anastomosis (union of the artery and vein used to create the AVF). He employed a "venoplasty" or balloon to "blow out" the narrowing. This resulted in the "dead heading" of all but a portion of the original fistula - a 3 to 4" portion nearest the anastomosis remained, and the immediate development of an expansive array of feeder or run off vessels along the middle, outside, and underside of my right forearm and up on to the back of my hand.
My HHD team used one of these new vessels for the venous portion and with the original arterial site, began cannulating the same site during each treatement with sharp dialysis needles progressing from 17 gage up through 15 gage. This process developed buttonhole access for each site, to permit the use of 15 gage blunt dialysis needles, which I could place (stick/cannulate) myself. This was the objective from the start and I was able to "go home" when I could demonstrate adequate knowledge of the equipment, hemodialysis, place my own needles and perform treatments unassisted.
My care partner and I have a well defined "division of labor". I set up the System1 cycler with cartridge and prime the machine as well as set out all of the supplies I require for a treatment. I place the two 15 ga blunt dialysis needles into my AVF (access) via the buttonhole sites, hook up to the blood lines from the cartridge in the cycler and then begin the daily or nocturnal treatment.
I now conduct two nocturnal treatments per week along with three short daily treatments. The nocturnal treatments will run for 7 to 9 hours, mostly while I sleep, and the daily treatments will run from between 2 hr 10 minutes for a 24 liter treatment to just under 3 hours for a 32 liter treatment. The reason for the odd dialysate treatment volumes is I utilize all the dialysate that I produce from the NxStage SAK's and the PureflowSL. A 60 liter SAK, actually makes 64 liters of dialysate.
The placement of a blunt dialysis needle is no real challenge with less than a steady hand owed to the use of the technique of "soft touch" cannulation. This technique requires holding the "needle" by the adjoining flexible tube and permitting the working end of the needle to find its way via an augering action through the buttonhole tract and into the fistula flap. Both are created through successive treatment sticks with a sharp dialysis needle. Depending on the fistula depth and adjoining tissue and skin, a buttonhole can accept a blunt needle after as few as 2 to 3 sharp sticks or as many as 6 to 8 sticks. I have 5 such buttonholes, all of which were developed by me. The original buttonhole sites developed by my HHD team during training, became unusable over the span of 8 to 12 months.
If you've got any more specifics you need answered, send a message to my profile.
Thanks much for the detailed response Stumpr54! Interesting stuff! I've been looking around the site at other info you've provided (along with info provided by others) and I'm digesting it all. I figure, I should learn about other options at this point as I can't just keep getting transplants forever.
As a proactive measure in preparation for possible future hemodialysis, you should consult with a vascular surgeon for the placement/creation of an arteriovenous fistula (AVF). The AVF is the "gold standard" of vascular access and one of several keys to successful hemodialysis. It helps immensely to get a long head start on this initiative as complications with AVF's, especially when they are new, seems the rule and not the exception.
Even in my case with a fabulously large vein that ran from the top of my wrist to my elbow, the flow near the elbow (venous) end was inadequate, and it led to chronic infiltrations during the first two weeks of HHD training. A fistullogram revealed an 80% narrowing (stenosis) at the artery and vein union (anastomosis). This was resolved immediately with a balloon venoplasy, which resulted in the clotting off of most of the original venous portion (leaving a sizable arterial portion close to the wrist) and the immediate development of an expansive array of new run off vessels extending up and around the forearm, all of which I discovered could be used for dialysis depending on my ability to reach them (underside of the foreare are out of reach).
While these new vessels were smaller in girth that the original fistula, the flow as evidenced by the thrill or buzz and the sound or bruit in each were quite robust, making them strong candidates for buttonhole site development.
Three of the five in use buttonhole sites could not be developed with the traditional consecutive sharp dialysis needle stick and treatment approach because of vessel size and geometry (twists and turns). I developed a process of sharp needle first to cut and pierce, but not advance (risk of infiltration) and treat, but withdraw and hold pressure, followed by cannulation with a blunt dialysis needle through the just cut and pierced but not fully healed site, and then conduct treatment. Depending on tissue and vessel toughness and depth, I have been able to cannulate these sites then with only blunt dialysis needles after two to five prior "two step" cannulations.
You will not see this technique used in any dialysis clinic by any nurse or technician regardless of their cannulation skill. It is time consuming to the point of delaying treatment start, unless you start treatment with two existing sites, and do the development work on a vessle that is not part of the blood flow path of the vessle(s) in treatment, and then switch over one of the blood lines to the newly cannulated site. Additionally, strict maintenance of aseptic technic mandates single needle sticks as the standard. Multiple needle sticks increase the risk of site based infection.
All of this is quite a bit of extra work, but well worth it considering the site selection flexibility that it affords me - 10 different combinations of venous and arterial in contrast to the typical hemodialysis patient's 1 combination. Managing all 5 buttonhole sites does require some memory of their prior usage and exercise of the unique cannulation technique that is required for each.
This is another key aspect of your care that is made possible only through home hemodialysis. As a result, I have proven to be quite the spectacle for in-center staff when I visit for a treatment or two during extended away from home business trips. Having a patient in-center place their own needles is quite unusual but for the individual to have more than two buttonhole access sites, even moreso.
Yeah, I had a fistula for 21 years (it was put in back in 1972), but it had to be disconnected. I recall it needed about a year to be ready for dialysis. A new one, I'm sure, will be one of the topics of conversation for my next meeting with my transplant team. We finished the last of my pre-transplant tests about three weeks ago, so I think the team will be ready to chat within the next two weeks. I'm not actually sure what I'm hoping they'll say at this point. I mean, I'd like to have another transplant and go back to just living my life, but otoh I have to say that I'm getting very tired of all this. I've been doing this CKD thing for over forty years at this point and...it's just getting old.