Can You Recommend A Specialist?

[maxwood]

I am looking for a specialist who treats ESRD.  My case is not too common.  I was diagnosed with Mantle Cell Lymphoma about 2 1/2 years ago.  The lymphoma actually attacked my kidneys (which is highly unusual for this form of lymphoma).  My original diagnosis was acute failure.  All the docs thought my kidneys would recover if the lymphoma treatment was successful -- which it was.  After about 90 days I was given a diagnosis of ESRD and have been on dialysis since.  I am currently on PD and have a fairly high level of residual kidney function.  Actually, since moving to PD over 1 1/2 years ago I have gone from a little over 2 Kt/V to almost 3 (95% from my own kidney).  I want to find a specialist who has some experience with this scenario.  I go to one of the top cancer centers in the country for my lymphoma and that doctor has been a major factor in my remission from this rare form of lymphoma.  Can someone recommend a doctor and/or a facility that might have this expertise?

Thanks.

[Simon Dog]

Location?

[maxwood]

I am in the southeast but will travel anywhere in the country.

[kitkatz]

It is not policy to recommend a specialist on this site.  Members please send a PM with a recommendation to this member. Do NOT post to this board, please.  There could be legalities involved.


kitkatz, Admin

[Simon Dog]

It should not be necessary to travel nationally to get top notch renal care.   I have FSGS, and my wife insisted I see this "big name doc" in Boston - in fact, she called in some favors to get me in to see him.    He examined my, my labs and biopsy report - and told me the local nephrologist was already doing everything he would be doing for me, and that he  would be glad to take me as a patient but that I would be well served sticking with my current doc (which I did).

[Fabkiwi06]

I'm no expert, but I would think your cancer treatment team should be able to point you towards someone. It makes sense to me to find someone who can work well with them and whatever your current treatments require. From what you've said, it honestly doesn't sound like your actual kidney part of the equation is going to need to be all that specialized.

Congrats on the remission! Those words are always such a relief to hear!

[kristina]

Hello Fabkiwi06,
... The best recommendation I could think of to find the best nephrologist for you could be to ask the lymphoma-specialist who so successfully has treated you. Why?
Because it could be very important for your future-well-being to have the lymphoma-specialist (who continues to check-up on you) and the nephrologist working together ...
... The reason why I mention this is because when I went into ESRF, my own cancer-specialist recommended the nephrologist who eventually set-up my dialysis-treatment
and the two of them have been working together ever since for my well-being ... and they also have worked together to eventually put me on the transplant-waiting-list ...
... and this whole set-up makes me feel medically well looked after ...
Best wishes from Kristina.

[Athena]

It should not be necessary to travel nationally to get top notch renal care.   I have FSGS, and my wife insisted I see this "big name doc" in Boston - in fact, she called in some favors to get me in to see him.    He examined my, my labs and biopsy report - and told me the local nephrologist was already doing everything he would be doing for me, and that he  would be glad to take me as a patient but that I would be well served sticking with my current doc (which I did).

I had a very similar experience to this when I sought the 'best Nephrologist' in the country. I met him and he also told me that my local nephrologist is providing me the best treatment there is. It was almost a joke to me in a way.

However the expert is someone who is at the forefront of renal research and is always there for any advice about forthcoming research and clinical trials. He has advised me that they should have some new CKD treatments in a 'few years time". (I hope that wasn't the equivalent of throwing a dog a bone in order to get rid of the dog!).

That said, I still think it's a useful pursuit for any patient to seek as many different expert opinions as they could manage, if for nothing else, than to find out how little kidney specialists really know about kidney disease and what to do about it. Without doing this, the feeling that one could always have done something more to help oneself can be a bit crippling as well. As human beings we always need to feel that there is something more to fight for and hope for.

I'd keep trying to get referrals to other leading specialists. Everyone knows who these experts are in the renal field so it's a matter of asking the right people.

[iolaire]

All that I can suggest is you try to find published studies on your issue and see if you can track down doctors who are similar with it form those studies. 

For example a Google search for "mantle cell lymphoma kidney failure" primarily brings back research studies:
https://www.google.com/search?q=mantle+cell+lymphoma+kidney+failure

From there you need to track down the authors.  The first link only gives initials, but this one has full names and the institution on one person:
https://www.researchgate.net/publication/51813037_Renal_involvement_of_mantle_cell_lymphoma_leading_to_end_stage_renal_disease
Hyun seop Cho
Institution:  Gyeongsang National University Hospital

You could try to contact the Hyun at his Republic of Korea Hospital and see if he has US peers.

Otherwise you could continue down the studies and try to find a study written by someone at a US research center.

Also you could reach out to the Lymphoma Research Foundation's Helpline at the bottom of this page to see if they have US people leading the studies they mention:
http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157

[Simon Dog]

Second opinions can be very valuable, if only to confirm you are on the right path.    My employer (at the time) offered a neat service where you could get a second opinion by email.  You provided medical releases for all your records, and they had a doc somewhere else in the country write up a detailed report.  It confirmed I needed the surgery, and why.

Transplant candidates should have a talk with their neph (the one NOT on the transplant team) asking "what KDPI should I hold out for?".  Transplant teams like to cut, and they may push a lower KDPI on you than the doc who knows you best would recommend.

[kristina]

Transplant candidates should have a talk with their neph (the one NOT on the transplant team) asking "what KDPI should I hold out for?".  Transplant teams like to cut, and they may push a lower KDPI on you than the doc who knows you best would recommend.

Hello Simon,
could you please explain what it means that "transplant patients should have a talk with their neph (the one NOT on the transplant team)
asking "what KDPI should I hold out for"? ... Sorry about my ignorance, but could you please tell me what it means
and how much choice is there for transplant patients?
Many thanks from Kristina.

[PrimeTimer]

Maybe a pathologist could help with an opinion. Some of them, particularly with the VA do a lot of traveling and they've seen many conditions that some doctors might never see.

[Simon Dog]

Supermarkets grade meat Prime, Choice, Select, Standard, Commercial, Utility.    Similarly, cadaver kidneys are rated on a quality scale.

KDPI is the Kidney Donor Profile Index, and is a 1-100 measure of how "good" a kidney is (1 being the best).   You have an EPTS (Expected Post Transplant Survival) score 1-100 (1 being the best).  If your EPTS is 20 or less, you qualify for a KDPI of 1-100.  If your EPTS is 21 or over, you qualify for a KDPI of 21-100.  You will not have a EPTS of 20 or less if you are at least 53 years old.

The literature suggests there is a strong correlation between the KDPI score and longevity of the transplant.

You will be told the KDPI when you get an offer from the waitlist.   You can accept it, or turn it down and wait for something better.  No, they don't kick you off the list for turning down an organ.   Surgeons like to cut, so I would also suggest you get an opinion from your neph who is not on the transplant team.

There is also CMV status (Cytomegalovirus, + or -; irrelevant if you are among the 60% of population already positive) and "risk population" (street people, addicts, etc.) that will be disclosed at the time of offer.

You will need to make a decision quickly, so it is best to understand these things before you get the call and have an idea in mind of what the maximum KDPI you will accept is, and if you will take a CMV + or high risk population kidney.

My neph told me he got an urgent call from one of his patients on the weekend "I was offered an organ, should I take it".   He suggested she decline, and she got a better one a few months later.  It's much easier to have that conversation with your doc ahead of time when you are not under pressure to make a decision immediately.

The fact that people on the transplant list are not pro-actively given this information well in advance of any offer is in my opinion downright negligent.

[kristina]

Many thanks Simon !
I shall print it all out, study it very carefully and make some notes which I shall then discuss with a medic.
... And many thanks again for these very essential informations!!! ...
... Just goes to show how complicated one's ESRF-survival can be and how diligent one must be at all times !!!
Many thanks again and kind regards from Kristina.

[kristina]

P.S.
There seems to be a new (?) problem developing with kidney transplants, as I have heard on the news today:
Some kidney-donations originate from donors, who develop issues with cancer, which means,
that as a result of this, the donated kidney itself has also the possibility to develop cancer  ...
... It surely seems to be risky to go for a kidney-transplant...
....but there again, life itself seems to be a "risky business" ...
Best wishes from Kristina.

[maxwood]

 Thanks for all the great suggestions!  I did not mention that the form of Mantle Cell Lymphhoma I have is rare.  It is about 5% of all lymphoma cases.  Even more rare is that it presented in my kidneys.  I went to MD Anderson (MDA), which is one of the top cancer facilities in the world, and my doc at MDA specializes in the treatment in this form of lymphoma.  He is one of the best in country and he said that in his 25 years of practice he had seen only one other case where the disease presented in the kidney.  I was already on dialysis when I got there.  He focused on my lymphoma with the understanding that my kidney issue was being handled.  His recommendation was go immediately on the transplant list.  Well, if any of you here have had cancer you know you can forget it -- at least for several years after your remission.  In any event, the damage to my kidney is most likely no different than other forms of kidney failure except mine is not a congenital condition.  By the way, I moved to PD about 1 1/2 years ago and have gone from a little over 2 Kt/V clearance to almost 3.  95% of that clearance is from my own kidneys.  So, my kidneys seem to be getting better.  I want to help them all that I can.

[maxwood]

All that I can suggest is you try to find published studies on your issue and see if you can track down doctors who are similar with it form those studies. 

For example a Google search for "mantle cell lymphoma kidney failure" primarily brings back research studies:
https://www.google.com/search?q=mantle+cell+lymphoma+kidney+failure

From there you need to track down the authors.  The first link only gives initials, but this one has full names and the institution on one person:
https://www.researchgate.net/publication/51813037_Renal_involvement_of_mantle_cell_lymphoma_leading_to_end_stage_renal_disease
Hyun seop Cho
Institution:  Gyeongsang National University Hospital

You could try to contact the Hyun at his Republic of Korea Hospital and see if he has US peers.

Otherwise you could continue down the studies and try to find a study written by someone at a US research center.

Also you could reach out to the Lymphoma Research Foundation's Helpline at the bottom of this page to see if they have US people leading the studies they mention:
http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157

That is just phenomenal!  I don't know why I did not think of that.  The patient in the first abstract sounded just like me - except I am still here :-).  I will read more of these abstracts.  Thanks, again.

[iolaire]

All that I can suggest is you try to find published studies on your issue and see if you can track down doctors who are similar with it form those studies. 

For example a Google search for "mantle cell lymphoma kidney failure" primarily brings back research studies:
https://www.google.com/search?q=mantle+cell+lymphoma+kidney+failure

From there you need to track down the authors.  The first link only gives initials, but this one has full names and the institution on one person:
https://www.researchgate.net/publication/51813037_Renal_involvement_of_mantle_cell_lymphoma_leading_to_end_stage_renal_disease
Hyun seop Cho
Institution:  Gyeongsang National University Hospital

You could try to contact the Hyun at his Republic of Korea Hospital and see if he has US peers.

Otherwise you could continue down the studies and try to find a study written by someone at a US research center.

Also you could reach out to the Lymphoma Research Foundation's Helpline at the bottom of this page to see if they have US people leading the studies they mention:
http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157

That is just phenomenal!  I don't know why I did not think of that.  The patient in the first abstract sounded just like me - except I am still here :-).  I will read more of these abstracts.  Thanks, again.

One thing you might find is that what is rare to you, is not so rare to another ethnicity/culture.  It might be that this condition is more common in Korean and thus the Korean's are studying the issue.