College student donates kidney to ailing grandfather

[okarol]

College student donates kidney to ailing grandfather
Mark Gould, Multimedia Journalist     1 day ago

(NBC)-- Leah Green gave the ultimate gift this holiday season and she has a sweatshirt that tells the story.

It says, "I'm giving my grandpa a kidney for Christmas... What are you giving yours?"

With no kidneys of his own, her grandfather Paul Thompson, 59, had a long road ahead on dialysis.

"We never really sat down and said 'Hey, I am going to give you your kidney-- thanks,' it was kind of like, let's just see if God lets this happen," the 20-year-old donor said.

She had the operation back on December 14.

Green first went to her mother about the topic.

Her mom then approached Leah's grandmother.

The message then got passed along to Thomas, who said Leah wasn't going to take "no" for an answer.

"She is my own personal little angel," Thompson said. "After everybody worked on me for a little while, it's just an amazing thing that she would do this."

"I didn't want to take the kidney but she she wanted to do it so I've got it, and it's working pretty good."

Leah, who says she was just raised to be a giving person, did hear from her family that donating a kidney is a little different than giving someone a couple dollars, or even the sweater off her back.

After medical testing, doctors gave the procedure the green light.

Even though Leah doesn't think so, her grandfather knows the gesture was grand, but what is even more amazing is that they were a match.

Paul is not Leah's biological grandfather.

"Matching on the first test, the first person you test, is amazing," Green said.

Green says she knew they were the same blood type because the pair had donated blood together.

She says blood donation is simply in her families' blood.

As soon as she could start donating, she did.

Now that she's had surgery, she is frustrated she has to wait a year before she can donate again. It's a policy that she smiles and calls "extreme."

"This has really helped me to grow up, and appreciate life more," Green said.

Green is a sophomore in an early childhood education major at Kent State University, where she is also a resident assistant.

Her busy schedule is posted on her closet door and it now includes time for the gym.

She says that, since the surgery, she is losing weight and is on track to be under 200 pounds for the first time since the sixth grade.

"I appreciate that I can run on the treadmill, and I appreciate everything so much more now, and I appreciated stuff before but I think I just see things in a different way."

http://www.wcsh6.com/news/watercooler/story.aspx?storyid=144960&catid=108

[DrMoskowitz]

The grandfather probably wouldn't have had ESRD in the first place if my paper had gotten any attention when it was published back in 2002 (1). Instead, news of it has been completely suppressed (2), making grand gestures like this necessary. My goal is to make the world dialysis-free by 2020. Please help me get word out about my paper! The fewer ESRD patients, the shorter the wait for a kidney.

Best regards,
Dave

References
1:  Moskowitz DW. From pharmacogenomics to improved patient outcomes: angiotensin I-converting enzyme as an example. Diabetes Technol Ther. 2002;4(4):519-32.
PMID: 12396747. (http://www.genomed.com/pdf/diabetes.technology.therapeutics.pdf).

2. http://tinyurl.com/healthcrime

[okarol]

7 posts today, basically the same info in each. Please, no more.


Repeatedly posting the same information in different threads is considered to be spamming.

Also, a reminder from IHD'd rules, from the "READ THIS FIRST":
About outside links to either PDF's, pictures, videos, etc. PLEASE DO NOT link them. If it is a worthy video, picture, or PDF, I can host it on the site, so we NEVER have dead links. I reserve the right to delete any and all outside links. So please ATTACH everything, if you can't attach it, ask me if I could attach it for you. To clarify to ALL members, I HATE OUTSIDE LINKS, DO NOT POST LINKS to files, links to a website is ok, but please do not link things like: pictures, flash, pdf's, videos, etc, etc. See the rule above to understand why. To clarify you can attach images and .PDF files just do not link to them.


okarol/admin

[DrMoskowitz]

I tried to illustrate what the world would be like if people actually knew about my 2002 paper. Many of the people on dialysis would not have had to go on, assuming their primary care physician had heard about my paper when it came out in Sept, 2002. Nobody going on the machine after 2006 from diabetes or hypertension needed to, essentially. If their creatinine had been 2 in 2002, I could have lowered it. Otherwise, it would have progressed to 10 by mid-2005 for diabetics, and 2006, for hypertensives. So I consider 90% of the patients who've gone on the kidney machine since 2006 completely preventable, had the media (and the renal community) simply done its job.

I'm sorry you don't feel any of this is worth repeating, even though there would be tons more kidneys available if 90% of ESRD could be prevented.

I shan't repeat myself any more, but I really had hoped for more from this site. I first posted in 2009, got nowhere, and thought I'd give it one more shot now. I posted again a few days ago. The only comment I got was yours about the file being broken. I posted again today to see if I could get anybody else's attention. Evidently not...

[okarol]

I have not removed your posts but reminded you of the rules regarding links. And, as admin for IHD I read over 100 posts a day. Most people also read the most recent posts and the posts, with the same information over and over, is tedious. I think many patients do not take it seriously when it's repetitive.  It's as if you have nothing else to say but refer to your paper from 9 years ago. Can you see how this does not come across as compelling information? That's my 2 cents anyway, maybe others feel differently.

okarol/admin

[DrMoskowitz]

What's impressive to me isn't that the paper is 9 years old. What's impressive to me is that it's been suppressed for so long. I could have prevented 90% of patients who began dialysis after 2006, if the paper had received the press it deserved when it was published.

That it has received no attention at all has more to say about the $50 billion/yr dialysis industry than about my data. 

Put another way, I haven't had to put a patient on dialysis in over 15 years. That's a recipe that's worked pretty well. Most recently, I treated a male patient in Arkansas with FSGS and a serum creatinine of 3.1. It's now 1.8. My approach really seems to work, and it seems to me a crying shame that (a) nobody knows about it, and (b) people, as a result, are still going on the God-awful kidney machine.

[Sax-O-Trix]

Okay, I'll bite.  My serum creatinine is 3.2 and I am pre-dialysis.  Tell me in simple terms how I can get it lowered.  I can no longer take ACE inhibitors because it raised my poatassium. 

[rsudock]

I'll bite too...any hope for people who have PKD?

[DrMoskowitz]

rsudock: Our PKD trial is free. Just email me at dwmoskowitz@genomed.com and I'll send you the trial documents.

Sax-0-Trix: The first thing I worked out, in July, 1993, was how to control high potassium. I use a second drug. It's not a problem below a creatinine of 2, but happens normally when the creatinine is above 2, and the problem is compounded by adding an ACE inhibitor. For several reasons, I'd like to go off-line with you. #1, the FDA doesn't like me publicizing my method, although they're happy to let me recommend it to other physicians. #2, I charge money for my Disease Mgmt service: $100/month for the 2-3 months it will take to get your BP and K+ under control. If it works, you can tell the group about it. If it doesn't, I'll give you back your money. First, please tell me--why do you have CKD?

[kristina]

My potassium & sodium are not a problem, as I control them with my diet.

I suffer from Lupus/SLE/MCTD & chronic proliferative glomerulonephritis

and my kidneys first failed in 1971 (coma, uraemia).

Kidneys recovered to 40-45% until 2006 when I was diagnosed with ESRF.

Kidney function for over two years 10-12%, no Dialysis yet.

I also suffer from hypertension and take 5mg Istin (Amlodipin) daily.

(No other hypertensive medicine possible because of drug-intolerance).

I would like to know if there are steps I could take to improve my kidney function?

Have you any ideas?

Thanks from Kristina.

[Sax-O-Trix]

I have CKD because I was born with a genetic condition called "Branchio-Oto-Renal Syndrome". 

[DrMoskowitz]

kristina: Diabetes, HTN, and FSGS are the three diseases I'm comfortable with. I have no real experience with Lupus nephritis or Sax-O-Trix's disease of branchio-oto-renal disease. That said, ACE and angiotensin II seem intimately connected with most renal diseases except PKD.

So let me ask you, Kristina, what do you mean by drug intolerance? Have you tried ACE inhibitors? What happens with them?

Sax-O-Trix: Since we found overactivity of ACE (the deletion/deletion, or D/D genotype) associated with both hearing loss and most causes of renal failure, I'd still be in favor of trying an ACE inhibitor or ARB for you. I read a little bit about BOR syndrome, which I'd never heard about before. The main BOR gene, EYA1, has been known since before 1998. But it's a transcription factor, and there's no drug yet to restore activity in it. There are related genes (SIX1 and SIX5), also transcriptional factors. But there are no drugs yet which improve transcriptional activity. It's hard to imagine there ever will be, since transcription is such a complex and unknown system.

In other words, I'd be happy to enroll both kristina and Sax-O-Trix in free clinical trials, assuming they and their nephrologists would be willing to participate.

Thanks so much for your super-intelligent questions.

[kristina]

Thanks for your answer, Dr. Moskowitz,

I suffer from drug-intolerance, which means my body reacts allergic to most medications,
Penicillin being the most dangerous one.

I have been unable to find an ACE-inhibitor which my body can tolerate without unpleasant side-effects.

I have taken Istin (Amlodipine) for many years and my body tolerates it very well indeed
and it controls my blood pressure very well.

I feel too vulnerable and fragile to take part in a clinical trial
but I would like to know if there are any steps I could take to improve my 10-12% kidney function
without taking the risk of making my situation worse.

Thank you, Kristina.

[DrMoskowitz]

Kristina,

Anything you tried at this point would be a trial, since nothing is known to work at this late stage of lupus nephritis. I completely understand how vulnerable you feel.

Sorry I couldn't help. I'm really just good for early stage CKD. My mission is to get word out that early-stage CKD can be arrested or even reversed, if anybody has any idea how to do that.

Best regards,
Dave

[cariad]

While this has gone far off the topic, I would like to ask you, Dr. Moskowitz, if you are "really just good for early stage CKD" how you think you could help those with PKD already on dialysis, as you mentioned in another post. Do you expect ACE inhibitors to get them off dialysis, and what of the cysts in the kidneys? Do you hypothesize that they will somehow shrink or disappear? Or does this trial have nothing to do with ACE inhibitors?

Also, I still would love an answer to my previous questions (and some new ones): Is your PKD trial FDA approved? Who is sponsoring? Which IRB do you answer to? Do you have any co-investigators? Do you have patient references whom interested participants could contact?

Thanks!

[kristina]

Kristina,

Anything you tried at this point would be a trial, since nothing is known to work at this late stage of lupus nephritis. I completely understand how vulnerable you feel.

Sorry I couldn't help. I'm really just good for early stage CKD. My mission is to get word out that early-stage CKD can be arrested or even reversed, if anybody has any idea how to do that.

Best regards,
Dave

Thank you, Dave,

I very much appreciate your thoughts about my situation.

Kind regards from Kristina.

[rsudock]

While this has gone far off the topic, I would like to ask you, Dr. Moskowitz, if you are "really just good for early stage CKD" how you think you could help those with PKD already on dialysis, as you mentioned in another post. Do you expect ACE inhibitors to get them off dialysis, and what of the cysts in the kidneys? Do you hypothesize that they will somehow shrink or disappear? Or does this trial have nothing to do with ACE inhibitors?

Also, I still would love an answer to my previous questions (and some new ones): Is your PKD trial FDA approved? Who is sponsoring? Which IRB do you answer to? Do you have any co-investigators? Do you have patient references whom interested participants could contact?

Thanks!

great questions Cariad! i would love to know as well. this is very interesting....

[DrMoskowitz]

I thought I'd answered this earlier today, but perhaps my computer timed out to the Internet and my reply   never made it to this website.

In any event, thank you for your great questions.

 "...how you think you could help those with PKD already on dialysis, as you mentioned in another post. Do you expect ACE inhibitors to get them off dialysis, and what of the cysts in the kidneys? Do you hypothesize that they will somehow shrink or disappear? Or does this trial have nothing to do with ACE inhibitors?"

In 2002, I used high-dose ACE inhibition for PKD and it didn't do a thing. The NIDDK is running an ACE inhibitor trial for PKD now. I tried to tell them it would be a waste of time and money, but nobody at the NIDDK or PKD Foundation bothered to reply to my phone calls and emails. The NIDDK in particular seems quite impervious to contact from the general public. They've managed to waste another $40M and another decade, after the appallingly stupid trials of the past--e.g. MDRD in the 1980s, ALLHAT in the 1990s (although, to be honest, that was an NHLBI trial), and AASK most recently.

I do expect PKD cysts to shrink using a different medication, one that's already being marketed for another use.

Now, for the additional questions:

My trial uses an FDA-approved drug, albeit for a new indication. Since I don't make the drug, I don't need to get FDA approval for the trial. The FDA recognizes that physicians have a medical license to use drugs off-label. The FDA only requires that the manufacturers of the drug, if they want to sell it for a new disease indication, first proves it to the FDA. I haven't been able to get any drug company to ever pay for any of my trials (see below), so the FDA question is moot.

Since 1993, when I first sought money for a clinical trial (using ACE inhibitors), I haven't had any sponsors. That's the basis of my beef with the NIH--they got out of clinical trials in the 1960s. The trouble now is that the pharmaceutical industry is imploding, and nobody is spending any money on clinical trials.

No big deal. There was no research money in the 1930s, either, and they solved a lot of clinical diseases then. I've learned how to run clinical trials for free. I now do research like the surgeons do: I report consecutive case series. I don't randomize patients to a placebo treatment.

As a result of having no funding, I don't use an IRB. They charge $10K. Instead, I ask each patient's physician to serve as the patient's own IRB. The physician has the best interests of that particular patient in mind, knows the patient thoroughly, and will be risking their medical license by prescribing the drug I use in the trial. No IRB could come close to this degree of involvement and protectiveness towards the patient. IRB's aren't required for research. The only requirement is informed consent. Some funders require an IRB, like the NIH. But since I don't receive any funding, I don't have to use an IRB.

I have no PKD patients yet, although I've been looking for about 5 years. Therefore, no co-investigators or patient testimonials yet. All it takes is a single PKD patient coming off dialysis (if that will ever happen), or a single PKD patient going from a creatinine of 4 to 2, and I have a publishable case report.

[cariad]

Thanks for the response, Dave. This leaves me mostly with more questions, though. I'll write down as many as I can right now, and leave it to you to decide whether or not to answer.

I will assume for now that you have the best interests of the patients in mind. That being the case, why do you not go through traditional channels to fund and maintain your research? You seem to have spent many years teaching at a top medical school (Washington University) so why not work with them, use their IRB, use their name and patient pool? It may be admirable to run a clinical trial for free, and to try to eliminate any bureaucracy coming between the doctor/patient relationship, but it does not seem at all practical, and there is much to be said, in my opinion, for having a number of different organizations overseeing this process. In clinical trial terms, a year is nothing. Why give up on funding so quickly?

You say you are not required to answer to an IRB. I hope you have run this by an excellent lawyer with a solid history of winning medical malpractice cases. Seriously. I was trained in the social sciences, to do human research. IRBs were never presented as optional. From the ClinicalTrails.gov site: "All clinical trials in the U.S. must be approved by an IRB before they begin.... Every institution that conducts or supports biomedical or behavioral research involving human participants must, by federal regulation, have an IRB that initially approves and periodically reviews the research in order to protect the rights of human participants." http://www.clinicaltrials.gov/ct2/info/glossary

Your comment that no IRB could take the place of a GP or nephrologist looking after the patient - I am not sure where to begin with that statement. In clinical trials, you should have both. You continue to work with your regular physicians, and if they have concerns about the way the trial is going, these individuals should speak up on behalf of the patient. The IRB number will be made available to participants, but having been both a participant and a researcher in human research, in my experience, participants rarely contact the IRB directly. From a participant perspective, at least for me, the IRB is the point of last resort. I would only contact them if I felt my rights were being violated and I could not sort it out with the principal investigator directly.

Please do elaborate on this statement: "The physician has the best interests of that particular patient in mind, knows the patient thoroughly, and will be risking their medical license by prescribing the drug I use in the trial." Are you saying that you are asking individual doctors to risk their medical license for your trial? Are you risking yours? I am not sure I agree with you that the FDA question is moot. The FDA oversees all drugs and medical equipment and placed the trial I was in on hold over the use of a device that was only in the most technical sense being used for a different purpose. I stress my 'excellent lawyer' advice once again.

You have said elsewhere that you have not had a single patient go on dialysis in many years. Are any of them championing your research? Would they be references for you? How many patients are we talking about? I read an article about you in which you stated that your very first patient enjoyed "dramatic" results when their creat fell from 3.1 to 2.9 in a month. Now, come on. That is not dramatic. I'm sure when mine was that high it could fluctuate that much in a day. http://caduceusjournal.net/essays/0911/moskowitz.html

I am not sure I agree that having a single patient go from a creatinine of 3 to 2 would really help you all that much. It would certainly be a starting point, but we hear some miraculous things on this site from time to time. We've had people on dialysis recover function and come off dialysis with no intervention whatsoever. So for me personally, I would want to see results in more than one patient.

The clinical trial I am in is funded by the NIH. Also, the DOD and the co-Principal investigator. Your set-up, eliminating the IRB for your clinical trial and just working with one other physician, sounds like a tremendous conflict of interest. You stand to gain financially from this, I suspect, and you MUST report this. The informed consent document in the trial I am in leads with conflict of interest.

I do believe that there are times when the medical industry won't face facts. I love the story behind the discovery of h.pylori - how no one believed them and they had to infect themselves with the bacteria in order to prove this causes the majority of ulcers. Perhaps you truly are the next Marshall or Warren. I do not have the medical background to determine if you are onto something or not, so if I were in a position to enter a clinical trial now, I would consult with any and every doctor that I trust before proceeding. Do you personally take ACE inhibitors? How would you treat kidney failure in yourself or a loved one?

Thanks again! I appreciate the thorough explanations!

[DrMoskowitz]

There's a big difference between being a highly sought-after clinical trial participant, and a clinician with a testable hypothesis. As a trial participant, you only hear about well-funded trials, since they're all pursuing you. You have no idea of how little funding is actually available, and how tiny the "old boys' club" is who gets it.

All institutions receiving federal funds have to use an IRB. But institutions not receiving federal funds don't. I wish I were receiving federal funds. But see above.

Every time a physician prescribes anything, s/he puts his/her medical license on the line. That's because any interaction can lead to a lawsuit. If 30 yrs of medicine have taught me anything, it is that a horrible outcome is always possible. It's when you don't consider it that it tends to happen. The drugs I use are among the safest in medicine. They are considerably safer than aspirin. That doesn't make them risk-free. There's still a 1% risk of angioedema, which isn't predictable ahead of time.

There are many nephrologists who argue exactly the same thing you do, that fluctuations in creatinine mean nothing. I happen to believe that creatinine is very easy to measure, and that changes of 0.1 are significant. A creat that goes from 3 to 2 is going in the wrong direction for dialysis.

I've been taking high-dose ACE inhibitor for about 15 years. I credit it with keeping me from being overtly diabetic so far. It runs in my family, and a random sugar when I was an intern was 145 after a donut.

Thanks for your great questions.

[cariad]

There's a big difference between being a highly sought-after clinical trial participant, and a clinician with a testable hypothesis. As a trial participant, you only hear about well-funded trials, since they're all pursuing you.

Sorry, I am not laughing at you, but at how far from reality this actually is. Absolutely no one was pursuing me, that I can promise you, and my husband who is also a participant can corroborate. I contacted roughly a dozen hospitals trying to find a trial that would accept me, and it took me four years. Harvard said they would accept me, then my PRA went slightly above zero and they said that was an automatic exclusion. The doctor who finally agreed to take a chance on me had to request a protocol deviation from the FDA because they were excluding retransplants. I have said numerous times on this site how indebted I feel to this particular doctor. I was asked to speak to other patients considering the trail after I went through the transplant portion of the trial, and yes, I feel that they were being courted. I, however, had to fight just to get an audience with any doctor I contacted and hear over and over that I was wasting my time, their time, did not know what I was talking about, even that I was going to die. Some doctors don't like patients that think for themselves.

I am sure there is little funding, and I probably do seem naive - I do not claim to know the intricacies of securing funding for clinical trials. I have read up on your background and it certainly sounds impressive and compassionate, and I would love to believe that you have found the answer. Are you currently treating any patients with high-dose ACE inhibitors? If I had known about you five years ago, perhaps I would have been game to try it, though I don't know that it would have worked to prevent retransplant. As it is, my creat is normal and I am not looking to enter a clinical trial (I am still a participant in this one). You are getting the word out here, so perhaps someone will decide to give your method a shot. You seem to get frustrated quickly. I know this is your career, but these are our lives and we have to worry about being sold on dangerous 'miracle cures'. We had a guy come on here a year or so ago claiming that saunas were the answer to kidney failure. It upset people. There are people on here who are scared and desperate to find an answer. I am sure as a doctor you've seen how hopeless people in ESRD can become.

I do wish you luck in your pursuit to rid the world of dialysis.

[Zach]

And then there was the Mexican Clinic that would cure ESRD.

[kristina]

Kristina,

Anything you tried at this point would be a trial, since nothing is known to work at this late stage of lupus nephritis. I completely understand how vulnerable you feel.

Sorry I couldn't help. I'm really just good for early stage CKD. My mission is to get word out that early-stage CKD can be arrested or even reversed, if anybody has any idea how to do that.

Best regards,
Dave

Dave, if you don’t mind I just would like to ask you, is there anything more I can do?
I weigh between 52.5 – 53 kg, I am 165 cm tall, so I can’t lose any more weight.
My potassium, phosphorus & sodium are controlled through my vegetarian diet.
My kidney function has been 10-12% for the past 2 years, I am not on dialysis; I do my daily walks/exercises,
I am trying to find a way to lower my creatinine and urea without the intervention of any medication.
Have you come across any possibilities in ESRF/Lupus/SLE/MCTD/chronic proliferative glomerulonephritis?
Thanks again from Kristina.

[DrMoskowitz]

kristina

I was trained as a biochemist, so I believe in drugs. If I were in your shoes, I would definitely try a super-hydrophobic ACE inhibitor (Mavik), plus Florinef to control your K+. I'd be happy to manage your meds along with your nephrologist, but we'd have to get his/her buy-in.

You'd need to get labs within a few days of starting, to make sure we're on the right track. If not, we'd have to stop the new drugs immediately. My guess is that your labs would show improvement, or at least no deterioration, within a few days of starting this new regimen.

Best regards,
Dave

[kristina]

Thank you very much for your reply, Dave,
and your suggestions of medications.
I am still trying to find a nephrologist
who has a good understanding of MCTD.

Thanks again from Kristina.