Trust your doctor? READ THIS.

[JFN1]

Our niece Brittani just had her second double lung transplant in 18 months.

She is doing fantastic. She is doing better than fantastic. The differences between the first transplant and this one are night and day.

We wanted to know why, and found out some very disturbing information which had been withheld from us. Until now.

We were never told about the first donor's lungs, or anything about that person. We didn't know gender, age, or health. And we didn't ask, as it was either get the lungs in her, or watch her slowly die - and, we wanted to be respectful to the donor, and their family.

But now, we have learned:

Brittani was sick with a para influenza virus the day of her first surgery. The test results came back AFTER the surgery had been started, AFTER they had already cut her old lungs out of her.

The first set of lungs came from a 44 year old woman, who had died of a stroke during surgery.

The surgery the woman died during was a kidney transplant.

Not her first kidney transplant. Her second.

Why did she need a kidney transplant? Because she had cancer, and the chemo destroyed her kidneys.

So, to recap: Brittani was already sick when they did her first surgery. She should not have had the surgery while sick. The donor's lungs had already been through a body sickened by chemotherapy, and then through courses of anti-rejection drugs because of the donor's first kidney transplant.

Everything I've read suggests the donor lungs should have been rejected as non-viable for transplant.

So why did they use them?

They had to. Brittani's lungs had already been removed, and these were the only ones available.

What. The. FUCK?

It's not like these are lower echelon doctors, either. These are TRANSPLANT SURGEONS, supposedly among the very best in medicine. She's being treated at the same hospital, a nationally known children's hospital. They likely went to very good schools - surely West Hollywood School of Medicine (Dr. Nick) doesn't give out transplant degrees.

Is this why we pay the most for health care of any country on the planet? For recklessness like this? If they had done their jobs right the first time, would Brit be having this second transplant less than two years after the first? And most of the last year has been hell for her - back on oxygen, no energy, can't fucking breath, or laugh, or sneeze, or cough...or be an 18 year old...

I am so pissed...how much shorter is her life, because of this? No one can tell us...

[cynatnite]

1. Most of the time it's due to people being too afraid to question...

Doctors can be very intimidating and too many people don't do enough questioning. Also, doctors aren't always right. When in doubt, get a second opinion.

It doesn't say the doctor is incompetent. It says you want assurances the right steps are being made.

I spent a lot of years in the medical field and one of the biggest problems I've seen is a lack of communication on the part of doctors, patients and their families.

[JFN1]

2. Such communication has to be the doctor's responsibility

We only know what he tells us - we may not even know the correct questions to ask. And we trust them when they open their mouths - how can we afford not to?

[cynatnite]

3. A doctor can only do so much in that regard...

and to be honest, some doctors just aren't talkative types. I've seen top-rated doctors with the personality of a brick.

It really has to work both ways for it to be an effective relationship.

[roguevalley]

16. I am glad she is better and will get back to her life. That is the

biggest blessing of all. I learned with my mom and dad to demand answers and be brave about it. I am glad your family is going to have a happy ending. Bless you and yours and this brave girl.

[InvisibleTouch]

21. You're right, that's how it SHOULD be...

...but sadly, that's not how it is, anymore.

When a life is at stake, we have to be willing to seem obnoxious with constant and detailed questions. And if the doctor brushes us off or gets irritated or condescending, that's a signal to find another doctor.

[elleng]

26. We can't afford TO TRUST THEM.

This does NOT mean be obnoxious, but every patient needs advocates, and they must REALLY ADVOCATE for the patient.

Sometimes this may be at risk of opposing some wishes of some family members, but it must be done.

[spanone]

4. been going to my doctor for over twenty years....last visit my cholesterol was up...

he said it was probably alright since there was no history of heart problems in my family...then i proceeded to tell him all the relatives i have who died from heart disease including my father, his father, his mother, his brother, his sister and on and on....shit he has had in my file all these years.

[panader0]

5. I am sorry for what all have been through.

All the best wishes for a speedy recovery for Brittani.

[napi21]

6. Transplant surgery is quite unique from what I can tell. My cousin

had a pancreas transplant about 6 years ago. His pancreas was severly damaged by diabetes since childhood. He was on the emergency list, and was called near thanksgiving that they had a donor. He was told at the time they could NOT identify the donor nor any information about the donor. THAT was a condition of getting the organ.

While he was in the hospital and being preped for the surgery, the Dr. layed the chart down while he talked to my cousin's wife, and his son sauntered by to check what he could find. The donor was an 18 yo man who was hilled in a car accident from severe head trauma. Needless to say, this sounded like a positive thing.

4 years later, my cousin developed throat cancer. They traced the source down to the DONOR!!! Apparently the cells were in his body, though dormant, before he was killed.

The only reason I tell you this is to say, you really never know what the future holds.

BTW, my cousin is still alive, and doing marginally well. They had to reduce the imunosuppressants that a transplant patient takes and prescribe a cancer fighting drug. The cancer has not returned, but his possible rejection status is being closely monitored because of the reduced meds.

[Mnemosyne]

20. Did your cousin still have diabetes after the transplant?

I had no idea they could do a pancreas transplant. So sorry your cousin has had a such a tough time.


Re: OP

It sounds as if the surgeons in Brittani's first transplant were in full bore CYA mode. Did the same surgeons do the second transplant?

Life is basically a crap shoot and the odds keep going against us, it seems.

Best thoughts for hope and peace going out for Brittani.

[napi21]

22. No, the diabetes is gone! He stil has to test every day, because

that's one of the first indicators that the new pancreas isn't functioning right or might be being rejected.

[Mnemosyne]

30. Even though he still has to test, what a wonderful thing to 'escape'

such a horrible destroyer. How sad though, that such a miracle had to take such a terrible unexpected turn. :(

[Luna_C_06]

31. I know this thread might be kinda old,

but I'm currently at the top of the Mayo clinic's waiting list for a pancreas transplant. I've had type 1 diabetes since I was 3 and after 20 years of it I'm really starting to feel the complications. Not even an insulin pump could control my blood sugar. For instance, yesterday I woke up with a blood sugar of 305 (after not eating anything for 11 hours), but when it was time for my bedtime shot, I had dropped down to 43.

Anyways, could you tell me more about his transplant, if you don't mind?

[AngryAmish]

7. Transplants once started are hard to stop

They want the out of the donor and into the recipient ASAP.

Things get lost in the rush to get things done.

Wanna sue a transplant surgeon? You can't.

In almost every jurisdiction you need an expert in the same field (transplant surgery) to testify against another transplant surgeon. They all know each other. There are a relatively few schools that teach thoracic transplant surgery (and abdominal transplant surgery). They all know each other from conferences. They peer review each other. They do not testify against each other.

Also, no colleague will testify against a transplant doctor. Huge money to be made with transplants. If one does, they are blackballed from every major medical center. Have fun living in Detroit, doc!

Sorry to be the bearer of bad news.
(Actually, call a lawyer. But don't be optimistic.)

[JFN1]

8. We don't want to sue anybody

We just want them to be more careful, more competent.

NONE of the things that happened to Brit during the first transplant were UNAVOIDABLE.

This is what concerns me. When such sloppiness is allowed at this level of medicine, what does it say for the rest? Are they always just guessing, or do they actually have a clue?

[ChazII]

27. CHLA?

[wolfgangmo]

34. Any competent doctor will admit that it is guess work.

The human body is amazingly complicated and completely individualized. In plain english this means that we don't know even a part of that complexity and every person is different.

The problem with large swaths of medicine is that it is based on 19th century technology and chemistry principals and does not individualize for each unique patient. I prefer an integrated blend of medicine and approaches and have structured my clinic to reflect that. We use ND, MD, DC, DO as well as a host of alternative methodologies, all of which have functional research backing them up.

If you think that Docs have all the answers then you are wrong, but also in good company as many people make that assumption. But it is a dangerous assumption to make.

Good doctors know and admit this. Bad ones think they are God. Really bad ones work for the insurance companies coming up with reasons to turn down your claim.

[Warpy]

9. Just because a person has had chemo and transplant

of an unrelated organ doesn't render donor organs unsuitable.

A donor with a good tissue match became available and the doctor grabbed the chance. Donors don't appear that often.

When the recipient is sick enough to be at the top of the list, just about any organ that isn't contraindicated by something like HIV or hepatitis B or C is going to be an enormous improvement. Few will wait for absolutely perfect organs from a young donor who died of something clean like a brain aneurysm to appear because such organs generally don't.

I am sorry Brittani has had such a miserable time with her health at such a young age. I am not sorry that she's had two chances to extend her life via transplant.

I hope this has explained some of the reasoning to you.

Even more, I hope Brittani has a smooth recovery and is able to be a normal kid for as long as possible.

[jberryhill]

13. What I'm wondering is....

If the first donor had done a course of anti-rejection drugs, would or would not that make the first donor a marginally better candidate, all other things being equal?

[Warpy]

19. No. Any stress on the organs is a bad thing

and it sounds more like a case of take what we get and keep a kid alive or wait for a perfect organ and let her die.

[jberryhill]

23. Thanks

I wouldn't think too many donor organs come from "healthy" people, if you know what I mean.

[JeanGrey]

14. Yes it does. I had a liver transplant at Mayo clinic in 2004

and all kinds of treatment at different hospitals and they ALL say you cannot donate an organ once you have received one.

[Warpy]

25. The liver is quite different

because all drugs are processed there. It's much more likely to suffer subtle damage from chemo, immunosuppressant, and other drugs.

Being a transplant recipient isn't an absolute contraindication to being a donor. Organs are just too scarce.

[JeanGrey]

38. Not what I was told. And I've asked over and over. Not once

did they say it was due to my transplant being "liver".

[undeterred]

10. There was a tv story a few years ago about a young man

who received bone from an anonymous cadaver after his legs were crushed in an accident. The bone came from a black market source. The donor had died in an accident but did not yet know she had ovarian cancer. Later on the young man who received the bone transplant got cancer.

There are all kinds of risks with a transplant. The donors family may not know everything about that persons medical history. A person could have HIV or hepatitis C and not know it yet. I think there should be a lot more disclosure, but when its a matter of life and death there are not always easy choices.

[TZ]

11. The problem is they can't always screen for certain diseases

They take too long. There was a case not too long ago of transplanted tissue having been infected with LCM..probably picked up from a hamster or other small rodent. Its possible that the donor DID NOT KNOW THEY WERE SICK.
Unfortunately no medical procedure is a hundred percent safe. Alot of the types of diagnostics needed to clear these tissues/organs take DAYS if not longer and that would just kill the organs.
Organ transplant is by nature very risky because of this and is only done when absolutely necessary.
I'm sorry for the OP's case but unfortunately that can happen even with good doctors.:(

[JeanGrey]

15. Donor bodies and organs are ALWAYS tested for HIV and Hep C.

The chances are very small you would either from a transplanted organ.

[undeterred]

17. That is true

However, there is still an interval between exposure to the disease and being able to confirm it. A hospital worker who had an accidental needle stick or a person who was raped by a stranger would not know right away if they had contracted the disease or not. Its rare, but there have been cases where the donor did not test positive and the recipient still was exposed to the disease.

[JeanGrey]

36. Yes but the chances are like a billion to one. Doesn't mean

it would NEVER happen but not likely.

[JeanGrey]

12. They didn't do their jobs. I am a transplant recipient and was told

that I could NEVER now be an organ donor upon death for all the reasons you mentioned.

I can't believe they used those lungs.

If people weren't so selfish organs wouldn't even be an issue.

[NashVegas]

35. Do You Have Any Idea of the Irony

Of your last sentence?

[JeanGrey]

37. Nope.

[slutticus]

18. That's terrible. I hadn't really thought too much about organs and people that need them....

Your story on DU has inspired me to become an organ donor.

Took a total of 4 minutes.

https://www.donatelifecalifornia.org/

[Mike 03]

24. Kick, Rec and Print this one out. Wow. People close to me are facing similar issues, and

this information is greatly appreciated, but terrifying.

[WillieW]

28. doctors hide in shroud of secrecy all of the time. I would sue.

They think that they are Gods. I have a similar problem. My doctor said that he did my surgery when I discovered that some intern did it. I have all sorts of problems now.

[Obamarama]

29. I can't imagine your anger and frustration, but I'll tell ya what....

I would be contacting a damned good attorney, and I'd make sure the hospital covers the cost of both procedures, plus future medical expenses. The hospital will send people from risk management to make nice with you to minimize the possibility you'll sue. Don't buy it.

I know you said your family doesn't wish to sue, and I think sometimes people sue over things that should remain water under the bridge. But this? Somewhere someone forgot to do something so simple (verify basic health status before surgery) and as a result, negatively impacted a life in a serious, life-threatening way. I think you should sue, but not to get rich...make them cover the expense of the surgeries.

That is just NUTS.

On a positive note, I'm thrilled to hear she's doing so well so quickly.

[Dorian Gray]

32. I am glad that she made it through

her second surgery well.

I am sorry about the stress of this all.

Perhaps, though, without the first surgery, she wouldn't have survived long enough for the second surgery? I know it's all stressful and horribly anxiety inducing for your family. You have my best wishes, my prayers, and my thoughts as you go through all of this.

[NashVegas]

33. I'm So Sorry.

It will be so much better when we can all more or less walk to the store for new parts.

[Stellabella]

39. That's just not right. My dh had cancer when he was 25, and he can't

even donate blood. EVER.

Medical mistakes are heartrending and infuriating. I hope your niece will live a long and happy life with her new lungs.

[Sheltiemama]

40. So glad to hear she's doing great!

Pretty scary story, though. I'm surprised lungs from someone who had been treated for cancer would be considered for transplant, but I don't know anything about such guidelines.