These agencies rarely communicate directly with patients, since they are responsible for distributing donated organs in a specific geographical area. The only way to go about it is to select a hospital/transplant center in your area. They will connect to the local OPO and through that contact will connect to the local and the national waiting list. In some area it is possible to list yourself with more than one transplant center, but this is not true everywhere; it depends on local rules and protocols.
As for a living donor, you are more or less on your own to arrange for a donor, who will then be tested by your chosen transplant center for tissue compatibility.
There are 'paired exchange' programs if you have a donor who is not tissue compatible with you. In this case, your prospective donor will donate to a pool of donors and then you move to the top of the list for tissue compatible donors in the pool. This can in many cases widen the availability of a compatible donor.
In any event, the short answer is to get in touch with the transplant center closest to you; there will be a lot of trips back and forth to the center before and shortly after the procedure, so proximity is a big factor to consider. I've known several patients who crossed state lines to list at a specific transplant center, but all the travel back and forth can be a serious problem.
I can't help at all with anything outside the standard US model for donations.View Thread
ACE inhibitors (usually used for blood pressure control) are usually the first choice for limiting proteinura.
Some patients have had good response from adding fish oil supplements to the diet, but this does not work for everybody. Still, if your doctor thinks it is a good idea then it might be worth trying for a few months.
If you are taking any over the counter high-protein supplements, that needs to stop (unless your protein losses into urine are so huge that your doctor thinks that protein supplements are required).
A few docs will try a low-protein diet with a few select patients, but again, this is not a good idea for everybody. And it needs to be done with medical supervision. Doing it on your own might actually make things worse in the long run.
Sorry but there just are not a lot of options without some sort of medication. Good luck.View Thread
As mentioned, there are different systems of classifying 'stages'. Most consider #3 to be "moderate" damage with some loss of function, but not dramatic loss of function. GFR of somewhere between 30 and 59 ml/min.
Some patients feel tired at this point, others dfo not. Some retain fluid, others don't. Elevated blood pressure is common, but not universal. Some become slightly anemic.
At this point, the goal of treatment is to control blood pressure, and to identify the underlying causes, then treat those causes. Diabetes is the most common cause in the US, but there are dozens of other causes.View Thread
It tends to vary with the patient and the transplant center.
The basic definition of ESRD, which is usually the main qualifer for a transplant, is marked at 15% residual renal function, 20% RRF for diabetics. And while a lot of physicians use GFR as a rough guide to RRF there are differences.
And other things get factored in by the docs: overall medical history, complicating conditions particularly cardiovascular health, patient compliance, psychological factors, just a lot of stuff.
It would be good to stay well ahead of the numbers, though. The transplant evaluation takes a while, and in most centers there is a fairly long waiting list. Both time on the wait list and severity of need are considered when committees meet to decide who gets on the list and where one stands in the waiting line. It's a pretty complex decision.
Patients with a living donor can jump over some of these hoops: you have one donor willing to give to one particular patient, and that cuts out the wait for the next cadaver kidney.
You probably need to be seen by a good nephrologist, probably by a urologist or a general surgeon who will remove the cystic tissue, and then get in touch with the local centers that do transplants.
I spent 4 years waiting, and while that is a lot longer than the average wait, it can take a while to get things rolling.View Thread
A history tale: for almost all of human existence, protein rich foods were the hardest ones to come by. Ancient people had to hunt or trap to get a high protein meal. So human bodies evolved to conserve and recycle as much protein as possible. That's a big reason that kidneys developed the way that they turned out. Only since the end of WWII has a consistent, inexpensive ultra-high protein diet been available to the wide spectrum of humanity. So the kidneys still try to conserve and reuse all the protein that is in the system. Dietary need for new protein is still rather low.
It's not great to overload the system with protein since any excess has to be filtered out by the kidneys, and the kidneys are specifically designed to keep the fairly large protein molecules IN the bloodstream, not to let them escape. So forcing the kidneys to excrete these molecules eventually damages the tiniest filtering units, glomeruli.
I can't begin to guess how much is safe to take since everybody's metabolism is different. What I can suggest is that you get a set of basic metabolic blood tests at your doctor. If you total protein and albumin numbers are within the normal range, then that is about the best you can do.
Taking in more protein than the body can use is expensive, wasteful, and potentially dangerous. You simply cannot FORCE the body to use more protein by providing an oversupply. It just doesn't work that way.View Thread
Creatinine levels relate to kidney function, and are not directly related to the bladder.
However, physical stress, trauma, blood loss from surgery, even dehydration can temporarily elevate creatinine.
You did not mention if they were doing any radiation or chemotherapy at this point or not. But depending on the chemo dose and the drug choice, and how wide an area is subjected to radiation, then those things could also affect renal function. Sometimes this recovers when the treatment is ended and sometimes it does not get much better.
You probably need to discuss this with the surgeon or with the oncologist or both. No two cases are ever exactly alike so the best answers will come from the docs on the case.View Thread
I(t takes a while to get the correct levels of the immunosuppresssant drugs, and these very often have to be adjusted over the years as time passes. The docs have to hit a good balance between preventing rejection (if doses are too low) and the toxicity of the drugs over the long term (if doses are too hight).
My drug doses get changed a little bit every few months, and that is 14 years after the transplant.
The sepsis is a genuinely significant complication to all that. Any infection is harder to fight when the immune system is lowered, and the first 6 months to 1 year after transplant is the most crucial time. The immuno drugs will eventually be lowered slowly, but this is not the best time to do it. But the serious infection has to be attacked right away, and if the right combo of antibiotics cannot be found, then an early reduction to the immune suppression may be required.
It's a very complex situation: do the docs risk possible organ rejection or do they dare risk causing greater harm from the sepsis? Again, it is a very careful balancing act.
Sorry but I have no solid advice to offer, other than to meet with the docs and get as much info as you can. I hope that everything goes well.View Thread
You'd really have to ask the doc who ordered the CT to interpret it.
The reduced size of the nearby kidney might be due to the mass pressing on and partly obstructing the renal artery or vein, but in that case one might expect to see elevated blood pressure and some specific shifts in a few blood test numbers.
Pain might result from the mass pressing on a vein or perhaps on the bowel, but again the doc would have to look at the CT to figure out precisely what other structures could be involved.
The doc might want to watch and wait for a span of weeks or months to see if the mass is growing or not. A second option would be to remove it right away. A third might be percutaneous needle biopsy but in a lot of cases, this technique is considered riskier than just getting it out as a whole mass and then doing the pathology later.
I suspect that he might opt to wait a bit then repeat the scan; if they scheduled the followup for March, then there probably appears to be little danger. If they wanted you in there tomorrow, someone would have found a hole in the schedule.View Thread
Some conditions caused, for example, by over-use of NSAIDS pain relievers, can be almost completely arrested by stopping use of NSAIDS. Hydronephrosis and urinary retention can be slowed down greatly by treating the underlying causes, but in many cases are progressive over the long term. Auto-immune conditions like lupus can successfully be slowed down by proper treatment, but are slowly progressive over the long term.
Various therapies to directly limit proteinuria have shown good results: ACE inhibitors, sometimes fish oil, and in a few cases, more drastic drugs like CellCept, or even cytoxan have worked well for some.
Still, the basic fact remains that there is no real, restorative "cure" for damaged kidneys. If proteinuria is caught early and treated successfully, some cases never affect length of life.
You probably need to consult a nephrologist EARLY rather than at the last minute. A lot of GPs tend to delay nephrologist referral until the disease has progressed to a more serious condition. But there are a number of studies showing a direct correlation between early nephrologist referral and better long term outcomes. Insist on a referral, at least for a baseline evaluation.View Thread
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