HUS & Transplant Eligibility

[Dizzy]

My husband's kidneys failed as a result of HUS & TTP this past July.  For the TTP he received several plasmapheresis treatments in July, August and October, and when they weren't working to help stabilize his platelets, he received 4 Rituxan treatments.  So far, so good.

Are there any other HUS patients out there? We do not believe it was caused by ecoli or salmonella, but it may be due to a protein deficiency. 

Also we are learning now that my husband may not be eligible for a kidney transplant because any new kidney will also fail due to HUS.........

Are there any HUS, kidney transplant successes?

Thanks.

[Rerun]

I'm not, but I'm sure someone will post soon if they are or know of anyone who is.

Best of luck.                             

[Dizzy]

TTT

[jbeany]

Okay, dizzy, apparently not a lot of people on here are familiar with that.  Can you give us a brief definition of HUS and TTP?  I don't recognize those acronyms.

[Dizzy]

HUS is an acronym for Hemolytic Uremic Syndrome. Many times when a child gets it, it was caused by a bacteria infection such as Ecoli or salmonella.  My husband was in his mid-50s when he was diagnosed and he had none of the symptoms associated with Ecoli or salmonella. 

HUS affects the blood and blood vessels. It results in the destruction of blood platelets (cells involved in clotting), a low red blood cell count (anemia) and kidney failure due to damage to the very small blood vessels of the kidneys.  In HUS the tiny filter units in the kidneys become clogged with platelets and damaged red blood cells. This leads to problems with the kidney's ability to filter and eliminate waste products.

TTP is Thrombotic Thrombocytopenic Pupura.  Thrombotic, is a term describing blood clots called thrombi.  In TTP-HUS, thrombi caused by clumps of platelets block small blood vessels.  That can cause damage to organs such as the kidneys, heart, and brain. Thrombocytopenic, is a term describing low platelet counts.  Platelets are blood cells that are needed to stop bleeding.  In TTP-HUS, they are used up in the abnormal clots that occur throughout the body. Purpura, a term describing the bruises and the small purple bleeding spots that are caused by too few platelets.

Some types of TTP-HUS have an autoimmune cause, in which the patient makes an antibody that blocks the function of one of their own enzymes, named ADAMTS13.  ADAMTS13 helps to prevent the formation of platelet thrombi.  Immunity describes the normal development of antibodies against foreign substances, such as bacteria, viruses, or a transplanted organ.  These diseases are called “autoimmune” because the patients make antibodies against their own tissues. We are still not sure if my husband has the ADAMTS13 deficiency.

That is an explanation as simply as I can come up with. 

[paris]

Dizzy, thanks for the explanation.   My brother has ITP, so am familiar with that.  His platelets are always dangeriously low.  And I have a friend that got ecoli as a young teen and it caused kidney failure and since, a transplant.  So, I kind of understand what your husband is dealing with.  Keep posting and sharing.  We want to learn more about you and your husband.   

[Rerun]

Very interesting.  I wonder if he will, or does, have problems with dialysis as it only works because "normal" red blood cells are too big to escape the filter where toxins can easily pass through.  Also, with the bleeding at the end when they pull the needles.   

[jbeany]

Have you been able to find a center that will list him for transplant?

[Dizzy]

My husband has been listed with one of the two local hospitals that do transplants.  He is accruing time, however, his nephrologist is unwilling to sign off on him getting a transplant because of his ESRD HUS Diagnosis.