New member - starting dialysis soon.

[jaxdaxter]

Hello,

I'm 23 and am a student at Exeter university, though I live near Leeds, but unfortunately due to my health I have had to interrupt. I have IgA Nephropathy and a kidney function of about 14%. I currently have a PD tube inserted but have not yet started PD as I'm still fairly well and my kidney function is stable. When I do start dialysis it will be overnight, every night for 9 hours.

I am being seen by two hospitals, St James Hospital in Leeds and Royal Free Hospital in London. Unfortunately due to my condition, I had a bonemarrow transplant at the age of 5 for a condition called Wiskott-Aldrich syndrome, I cannot just have a straight kidney transplant and instead will have to have another bonemarrow transplant to fix the IgA which they think is due to the Wiskott. This will hopefully take place in the summer.

Finally I will also have to have a fistula, which I'm quite concerned about, for my bonemarrow transplant to reduce the risk of infection.

Hopefully that explains everything clearly though any questions are welcome.

I do actually have one question, which is: Does anyone know Ninanna is doing? As I have read her posts and she seems to be in a similar boat to me. For example my doctors in London mentioned trials in Boston when discussing my treatment.

[MooseMom]

What an interesting introduction!  I'm so glad you've joined our community.

So, is the plan for you to start PD, then have another bone marrow tx for the IgA and THEN have a kidney transplant?

Can you explain more about why you are going to have a fistula?  Will it be the same kind of fistula that people have for hemodialysis?  What's the connection between a fistula and a bone marrow tx?  Do you use a fistula for a bone marrow tx?  Please forgive all of my questions!  I'm very curious!

I'm sorry, but I've not heard from Ninanna in a long time.  Maybe someone else has some news of her.

Again, welcome!

[jaxdaxter]

So the plan is for me to start PD when I eventually have to. That's probably at the end of this month.

Then the doctors in London are talking about having a bone marrow transplant in summer, then recover from that, then a kidney transplant.

The reason I'm going to have to have a fistula is because the risk of infection is much less when using a fistula for dialysis instead of a PD tube, due to the lack of plastic. This is particularly important during a bone marrow transplant when you're immune system becomes very susceptible to infection. It be a fistula in the arm, I've already had a vascular ultrasound.

Hope that clears some things up.

[MooseMom]

Yep, that clears it up.  Sorry for being thick.  I had a fistula, too, so I understand.  My little brain drew some sort of mistaken conclusion that people having a bone marrow tx had a fistula created to administer the new bone marrow or something.  Just ignore me. 

[Bambino_Bear]

 

MY husband also does PD and it works well for him.  Best wishes for you!!

[Darthvadar]

 ...

Hope you find a treatment option that works out well for you....

Keep us updated if you can...

Darth.... Moderator....