Meebo Chat is now part of Kidney In the News BLOG

Update: Chat added to Kidney In The News BLOG.   Interested in asking me a question?  If I’m online, try chatting with me using the “Meebo” widget at the bottom of this page – look in the right hand column.

Michael

Donor Exchange and Offers of Altruistic Kidney’s

Hello Everyone.

You know I don’t usually use this forum as a mouth piece for social causes – however I’ve received enough emails about this subject that I felt I needed to do something.

There are a lot of people out there who want to donate a kidney as either part of an exchange or as an altruistic means. All too often I get caught up in the “ethical” issues and/or the legal ramifications of the issue and forget that we have an opportunity to do some good here. I’ve wanted to create a website for donor exchanges for a long time – and while I have the ability – I don’t have the time. So in the interest of time, sometimes you need to do the easiest thing which is give the power to the people.

Today I formally announce a new page to my blog “Kidney Donor / Exchange List”. It will appear as a new tab where I will post the contact information for people who want to exchange or give a kidney away. The caveats to that are listed on the page, as are the criteria for posting. It’s up to those interested to make the contact and reach out. For my part, I will post the information I get that I feel is ethical – if over time I get a ground swell – I will work on creating a dedicated website for this purpose.

I am in no way competing with my friends at “Donor Registry” listed in my Blogroll – I just want to make sure that those who do read my blog have a channel to also promote their desire to exchange / give a kidney. In fact I encourage people to double post on both of our websites. The good folks at “Donor Registry” can be reached here.

Finally I will receive no money in exchange for this service – as I’ve stated before – this should always be a free or nominal cost service. Charging upwards of $500 for this service is a disservice to those who can not afford those prices.

Good luck and Don’t be evil…

P.S.  With over 1,500 unique visitors a month to date, we’ve finally hit a point where this JUST MAKES SENSE!

Michael

Skin Cancer and Organ Transplants

Often diagnosed, rarely discussed – how many of you realize that you are at a higher risk for developing skin cancer post transplant?  Even more interesting, those of you who had high sun exposure prior to your transplant are at a higher risk then those of us who stayed in the dark.

As stated by Dr Clark Otley “Approximately 35 to 70 percent of organ transplant patients develop skin cancer within 20 years following transplant surgery, depending on geographic location”

Sun Exposure is a Risk Factor
Dr. Otley found past sun exposure is one of the main risk factors. Patients with fair skin and a history of sun damage are more likely to develop skin cancer following transplant surgery than are patients with darker skin.

So What kind of skin cancers develop?

Dr. Otley found squamous cell carcinoma was the type of skin cancer most likely to occur in transplant patients. He said squamous cell carcinoma poses a significant threat to transplant patients because it can spread to other parts of the body and be more aggressive in an individual with a compromised immune system.

So what’s a guy or gal to do about it?

Dr. Otley found squamous cell carcinoma was the type of skin cancer most likely to occur in transplant patients. He said squamous cell carcinoma poses a significant threat to transplant patients because it can spread to other parts of the body and be more aggressive in an individual with a compromised immune system.   Additionally some work with Aldera an cream initially made for genital warts and Accutane (a potent acne drug) have shown some success in surpressing skins cancers.

In the meantime, I do what Baz Lerman recommended – “WEAR YOUR SUNSCREEN” – preferably SPF 30!

Don’t be evil!

Michael

NSAIDS and Kidney Damage (Advil, Nuprin,etc)

Ever wonder why you’re not supposed to take NSAIDS (like Advil) if you have a transplant or some underlying kidney disease? (You did know you shouldnt be taking them don’t you?).

First the headlines

1/28/08 – NYT – Kidney Peril Found in the Pain Reliever Ibuprofen

American Running Association – Ibuprofen and Kidney Damage

In fact as far back as 2001 we were starting to question the safety of these medications in patients with renal issues – NSAIDs and the Kidney Revisited:: Are Selective Cyclooxygenase-2 Inhibitors Safe?  (link here)

Unfortunetly, not all of us got the message – I can tell you personally I don’t take Advil or any NSAID (Non Steroidal Anti-inflammatory Drug) and haven’t for over 8 years.  So what’s the big deal?

The NYT times says the following: “Ibuprofen relieves pain by interfering with the body’s production of prostaglandin, a substance involved in inflammation. But at the same time, the drug constricts blood flow. 

Normally, the change poses little risk if used for a short period. But for those whose blood flow to the kidneys is already reduced by kidney, heart or liver damage, flu, or aging, ibuprofen could lead to acute kidney failure.”

You see, if you’re only dealing with one kidney to two bad kidney’s,  reduced blood flow to the kidney is a bad thing – it’s kind of like cutting off oxygen to your lungs – you start to suffocate.   The same thing happens to the kidneys in the presence of NSAIDS.  The question is how much is too much?  In the John Hopkins study – 12 tablets a day for 11 days is WAY TOO MUCH – however that’s probably the dose you’d get if you were in the hospital taking prescription strength NSAIDS – Even when reduced to 400mg 3 times a day (the normal dose), patients displayed kidney failure that reversed after stopping the medication.

Now I’m sure there are some of you saying “So what, it reverses after you stop it.”   That’s kind of like a boxer going into a boxing ring and fighting everyday – ignoring the punishment and pain – sure they get better after a few days – but what happens after years of abuse?  Just look at some of today’s aging boxers – they don’t look so good!  If your goal is to maximize the life of your damaged or transplanted kidney, then you should think twice before grabbing that pill bottle.

Consider yourself warned – and stick to the Aspirin!

 Michael

Transplantation without Medication

Great news – But I’m just not sure I’d want to go through a Bone Marrow transplant to get to this “Holy Grail” just yet…

Doctors now say they have developed a technique that could free many organ transplant patients from having to take immune system suppressing drugs for the rest of their lives.

    The treatment involves weakening the patient’s immune system, then giving the recipient bone marrow from the person who donated the organ. In one experiment, four of five kidney recipients were off immune-suppressing medicines up to five years later.

    ”There’s reason to hope these patients will be off drugs for the rest of their lives,” said Dr. David Sachs of Massachusetts General Hospital in Boston, who led the research published in Thursday’s New England Journal of Medicine.

    Since the world’s first transplant more than 50 years ago, scientists have searched for ways to fool the body into accepting a foreign organ as its own. Immune-suppressing drugs that prevent organ rejection came into wide use in the 1980s. But they raise the risk of cancer, kidney failure and many other problems. They also have unwanted side effects such as excessive hair growth, bloating and tremors.

    Eliminating the need for anti-rejection drugs is “a huge advance,” said Dr. Suzanne Ildstad, a University of Louisville immunology specialist who had no role in the work.

    ”It still needs some fine-tuning so that everyone who gets treated gets the same consistent outcome … It’s not the holy grail of tolerance yet,” she cautioned.

    In the 1990s, Sachs showed the treatment could work in a kidney recipient who was a good genetic match. The woman, who had an organ and marrow transplant in 1998, has not needed anti-rejection drugs for a decade.

    The new study involved five people who got kidneys from parents or siblings who had slightly different tissue types from the patients. Since many kidney transplants are similarly mismatched, there is hope more people might one day be spared immune-suppressing drugs.

Kidney Safety – 4 Golden Rules to protecting it from others

A viewer just asked me – “What can patients do to make sure an MD is up to speed on the special needs of renal transplant patients and drug safety?” (I edited the question a bit..)

Well, here is what I’ve been told patients should do:

1. Have a nephrologist whom you trust and see every 6 months
2. Ensure you keep in touch with your transplant coordinator – she’s your safety link to your transplant center and surgeon
3. Whenever you see an MD outside of these two who recommends a procedure or medication, run it by both 1 & 2
4. Finally, don’t be afraid to ask you MD what if any renal toxicities the medication / procedure you are undergoing will have on your kidney.

You can’t trust or ensure that every MD out there is a specialist in renal issues – it’s up to you to be your own advocate. Asking the questions and checking with your support staff (other MD’s and nurses).

Colonoscopy and the Kidney Patient – Should I be on antibiotics prior to it?

A viewer just asked  “Should a renal transplant patient should get antibiotics before a colonoscopy.”

First let me state that I am not a doctor, MD or otherwise – just someone who is interested in the renal patients level of care – so when it comes to medical recommendations, I will try to find resources in the press – but never will give my own advice. As always, an educated patient is the safest patient.

So with that said, two references out there suggest that the immunocompromised patient should consider taking antibiotics prior(prophylaxis) to an endoscopy / colonoscopy – however it is to be considered on a case-by-case basis per the MD.  Those references are:

Reference 1: National guideline registry (it’s very clinical!)

Reference 2: Article : Appropriate Antibiotic Prophylaxis for endoscopy

Bottom line:  It’s gonna be up to your GI MD and to be safe consult your transplant coordinator and nephrologist before the procedure!

Got Osteoporosis – Don’t got milk!

So what happens when it’s too late and we’ve already been diagnosed with Osteoporosis or Osteopenia?  (This means you are 2 standard deviations off the normal bone density for your sex and age group).

While Calcium supplements might seem like a good idea, the latest data suggests that it won’t have much of an impact – why?  Because most people don’t take them everyday like they are supposed to.    Yeah yea, I know transplant patients are supposed to be better at this – but the data’s the data!

So what’s next?  Well, there is a class of medications called Bisphosphonates - they inhibit Osteoclast production (The cells that are responsible for taking down the scaffolding).   The theory is if you stop or slow down bone destruction, then the body will continually build bone.  Drugs like Fosamax, Boniva and Actonel all provide this benefit – they do come with side effects (Bone pain, aches, flu like symptoms).

As you might recall – bone production requires two things – vitamin D (+ sunlight) and Calcium – so if you Calcium levels are not high enough, or your vitamin D levels are not high enough then these medications won’t work.

So what’s the difference between these medications?

Boniva is once a month – easy for those of you have bad side effects and or can’t remember to take your medications.

Fosamax and Actonel is weekly – however – some patients report for side effects with Actonel.

Finally there is a new sibling on the block – another medication that early reports suggest will be 1 year dosing – however it must be given via an IV – so perhaps it’s not the best option for everyone.

How much does a kidney transplant cost??

A number of people have asked me recently – how much does a transplant cost – the surgery – not the 1 year cost of medications. So I did a little research and this is what I’ve come up with, there is VERY little information out there published, printed or otherwise – so with roughly 4 sources, I took the average. I’ll ask you to comment and let me know what your surgery cost (Total, not what insurance paid, and I’ll update accordingly)

• The cost of kidney dialysis averages about $44,000 per year per patient (Univ of Maryland, 1993 data)

• Kidney transplant procedure costs can range widely but most average from $25,000 to $150,000 (Emory)

• $38,000 for a kidney transplant (Health Care Technology)

• Random posts throughout the web ($50,000)

The average of these four references is about :$54,875 – which covers the Hospital, Operating Room, Supplies, staff, nurse, surgeon and medications in hospital

Editor’s Note:  What I consider as the total cost of surgery is the following: OR, Supplies, Staff, Nurse, Surgeon, Medications in OR, Anesthesia – not the hospital room or after patient care – what the hospital charges and not what insurance pays – hope that clarifies things.

Transplanted kidneys lead to fractures and bone loss?

The last thing we tend to worry about after a kidney transplant is if we’re more likely to suffer from broken bones. Most people are focused on eating right, living their new life and just getting back to “normal”.

It’s not until some bone pain or a broken wrist, that we might wonder if there is something else to blame. One of the medications used quite often in organ transplantation is prednisone (otherwise known as a corticosteroid). No these are not the same medications that sports figures and weight lifters have been known to use. Our steroids are wonder drugs that among other things, “Cool off” our immune system from attacking our new kidney and also reduce inflammation in our body.

However, this wonder drug does come with some side effects. First some background – normally our bodies are in a constant state of “Building our bones”. There are two kinds of builders – the “osteblasts” who are responsible for putting up the scaffolding and the “Osteclasts” who are responsible for taking down the scaffolding – when they work in conjunction our body is like a large metropolitan city with buildings (bones), be built up and taken down for “Repair”.

Prednisone has the nasty effect of slowing or stopping the “osteblast” workers. The net effect? More buildings being taken down then put up. Over time our bones get weak and we enter a stage of bone loss called “Osteopenia” or small bone loss. When it get’s especially bad – and the buidlings have not been built up in a long time, our bones may start to get weak and crumble – this is called “Osteoporosis” – think of it like a city that’s been neglected and the bricks start to crumble away from the structure.

As the bone’s weaken, you begin to have a greater chance of breaking them – this can lead to fractures when falling to the ground, bone pain in your back or even fractures of your vertebrae. So what can you do? Well if you are on Prednisone , generally the benefit outweighs the risk – so you need to STAY ON YOUR MEDICATION and minimize the bone loss. You can accomplish this by doing the following:

• Exercise daily
• Take calcium and or drink milk and cheese
• Weight lift – this has shown to have dramatic impact on preserving bone

OK so what happens if it’s too late and you just found out that you already have ostepenia or osteoporosis?

Tune in next week for the answers…

Michael