What does the surgery look like

In case you are wondering what the surgery looks like, here are two videos.
1) Transplant Surgery with a bit of humor: There is a piece at the end of this video about bananas. People with kidney disease are usually asked to refrain from eating bananas because of high potassium in bananas. My brother loves bananas but has been staying from it for about two years. We will plan on having a bunch in the hospital for him.
2) a video with commentary from doctors

A newfound respect for these doctors

Finally, we have a date

We (my brother and I) now have a date and place finalized for the kidney transplant surgery.

It will be in Madison, Wisconsin at the University of Wisconsin Hospitals 

The date is Dec 10th, 2015. 

We decided on Madison because 1) we felt more comfortable with the staff 2) it has more experience with live donor than Chicago and 3) it has a higher ranked transplant program. Additionally, we had informal chats with some nephrologists (who were introduced to us through friends) and they had a small preference towards Madison. 

Approved as donor in Madison also

Just got word that I have been approved as a donor in Madison. Now we have a choice between doing the surgery in Madison or Chicago.
We talked briefly about dates for the surgery. Dec 10th is a candidate.
Now that we have both options available, I have asked my brother to talk to his set of doctors for advise on how to select.

Having talked to both places, there appears to be quite a bit of difference in the surgery procedures.
Hospital Stay:          Chicago (1 day) Madison (2-3 days)
Post surgery visit:    Chicago (5 days after surgery), Madison (10-14 days after surgery).

Surprised as to why these are not standardized across transplant units ? 

Approved as a donor !!!!!

After a long, painful and very stressful period of four weeks the transplant unit in Chicago approved me as a donor this morning. We have not discussed when the surgery will happen. Specifically, if they insist on finishing the TB medicine regimen then it will be in January otherwise it will sometime in December. They are insisting on a gap of three weeks between the marathon and the surgery. IMO, the three weeks is a made up number. They have no data to base this upon and have no experience/understanding on a what a marathon does a body and its organs.

I am waiting to hear back from Madison's transplant unit. Hopefully by the end of the week. 

Effect of Latent TB medicine on marathon training

As some of you know I have been training for a marathon (November 15th). I was concerned about the effect of the TB medication on my training. The first week after the medicine I was quite lethargic and did not have a good weekend run. I was wondering whether it was related to the antibiotics. Once again, there is not much research on this. I found one paper which said that there is not much of an impact (but strangely said that Vo2 max levels did go down). My ID doctor in Stanford assured me that there should be no impact on my training.

I am happy to report that the second week (after antibiotics) went quite well. I finished my 20 miler on Sunday (three days ago) and I had the fastest time of this season. So I am really pumped. Third week is going well as well. So I suspect the reasons for the fatigue in the first week were either coincidence or related to stress because of all the things circling the donor approval process. 

Update on Kidney Donor Screening (as of Oct 18)

I have not heard back from the transplant team in Chicago on next steps. They have still not qualified me as a donor. The team is getting together on Wed and I will know at that time.
In the meanwhile, Chicago transplant team  has "discovered" another issue. Apparently, in one of the urine test done about 3 months ago, there were traces of blood. However, since then I have given two more urines samples in which there were no traces of blood. Last Wednesday, the doctor came back asking me to give another sample. Apparently, they have a 3 out of 4 requirement. I don't mind being being thorough but the drip-drip nature of their investigation and subsequent requests for additional tests is frustrating and stressful.

In the meanwhile, mainly motivated by the shoddy treatment in Chicago, my brother and I have been actively looking at Madison, Wisconsin as an alternative venue for the transplant. Madison has a much bigger center (more transplants per year) and for whatever it is worth ranked higher than Chicago (by US News) (Yes, just like colleges there is a ranking for transplant units).  Madison has been collecting all the medical records related to my brother and me and making preliminary evaluations. They keep assuring me that they will not need any more tests and are somewhat perplexed at what Chicago is doing.  At any rate, I hope to find in a week (10/25) whether Madison is an option. All things being the same, my brother and I are leaning towards Madison.

So next week hopefully I will know whether I am approved as a donor and depending on that when the transplant surgery can happen. I will keep you posted on where things stand.

Treatment of Latent Tuberculosis

As some of you know, I tested positive for Latent Tuberculosis. Latent TB is not infectious and doctors don't recommend treating for it. The test was based on something called Quantiferon Gold test. Apparently, this test has much higher accuracy. Also, the test results do not depend on whether you were vaccinated with TB in your childhood.

Background on Latent TB
I also found out that apparently fifty per cent of Indians test positive for this. So the Infectious Disease (ID) doctor was reasonably sure that this was not a false positive. Now comes to the challenging part. there is not enough data on what to do when a person with Latent TB becomes an organ donor. A major study with 20 doctors a few doctors came back with no consensus. Apparently, there are cases where the TB has been passed on to recipient.  The reason for lack of consensus is that there is some risk for the donor. The latent TB treatment can cause liver damage to the donor.
The other area where there is lack of consensus is whether the transplant should wait till the treatment is complete. (The treatment itself depending on the medicine and dosage comes in the form of a 3 month, 4 month, and 9 month regimen).

I signed up for the 3 month regimen. This is the highest dosage and requires me to take the pills under the supervision of a nurse. I have to take one dose every week for the next 12 weeks.  Luckily, the on campus Cisco clinic has agreed to provide me this service.  This saves me a 2 hour trip to Stanford Clinic every week. Not to gross you out, a side effect of this medicine is that my urine on the first two days is orange (no kidding.)

Yet another bump in the road (latent tuberculosis)

I felt relieved that my marathon training and long runs was not putting my kidney at risk. I was hoping to get cleared/accepted as a donor when the transplant team dropped another surprise. Apparently, in a blood test done about a month ago, I tested positive for latent TB infection. This indicates presence of inactive TB bacteria. This is not infectious. Apparently the transplant team had "overlooked" (their choice of words) this result. I am scratching my head about how they can do this. The test report color codes results that are out of range in a different color. All out of range values are in a different column. I am told that two people (a nurse, and a surgeon) missed it in the first pass while a third doctor caught this while (to use his words) he was dotting the i s. (I am reminded of the  Invisible Gorilla test, though it is scary that out of range values are in the same category as the Invisible Gorilla.)

This has a put a degree of uncertainty on kidney donation schedule. The doctor's claim that this does not make me ineligible but want me to get treated for this before the transplant surgery. 

creatine levels and Sunday long runs...

I have googled widely to see if there is any research that could potentially explain why my CCT tests went bonkers. I even talked (offline) to a nephrologist and shared with him my results. He was convinced that this was a testing error. In his words, the numbers were "so absurd" that it had to be a mistake. The transplant team, however, took a completely different tack. They wanted me to do another round of tests. Strangely, they didn't insist on the 24 hour urine collection. They just wanted a blood and urine sample roughly 16 hours after I had finished my long run. I think what the doctors were looking for was whether my kidney was indeed going into some kind of failure mode for about 16 hours after my long run.

I am sure the irony of all this is not escaping you. Here I am getting screened to become a kidney donor, only to be tested myself for some strange case of temporary kidney failure. Thankfully, the test came negative this time around. The doctors have concluded that this was the case of faulty test....

Bump in the Road (Sep 26 update)

inn my earlier post I had mentioned about the issue identified on Friday when I visited the donor team in Chicago. 

Before getting into details, a brief primer on what the kidney does.

During normal activity, there is some muscle breakdown. Muscle breaks down protein called creatine which is present in blood/serum. Blood goes into kidney which filters the protein into urine. Under normal conditions creatinine levels in both blood and urine are in steady state.  Kidney patients have very high levels of creatine in blood because kidney is not able to filter (like a clogged drain pipe).  There is a test called Creatinine Clearance Test (CCT) that does the following: 

• 24 hour of collecting urine measure creatinine level in the collected sample over 24 hour period. They give you a gas can and you pee into a gas can for 24 hours (yeah disgusting). Rest assured, I worked from home that day and so co-workers you can relax....
• Measure creatinine in blood at the end of collection.  

In a normal person, the levels will be in the normal range. 

I was asked to do the CCT as my final test in Aug. I did it on Aug 30. The test results came back with 

1) ridiculously low levels of creatinine in my urine and 2) normal creatinine levels in my blood. The urine collection stopped 24 hours but the blood draw was done 6 hours later (and this bit of detail is important as you will find out). The nurse called back to find out what happened. I had run 16 miles on 80 degree day, got dehydrated. The doctors seemed to think that explained it and asked me to repeat the test. 

I repeated CCT on Sep 7. Urine and Blood showed normal levels.

When I reached Chicago, the nephrologist seemed unsure of the explanation for the tests done on Aug 30. According to him (and it seems to make sense) if creatinine levels in urine were low then they should have been high in the blood which it was not. So he came up with a plausible theory (after 25 min of spontaneous thinking aloud in front of me) that I had temporary kidney failure during the 24 hour because of my run explaining the low creatinine level in my urine. However, my kidney recovered between hour 24 and hour 30 explaining normal creatinine level in my blood at hour 30.  Of course, he said that he had never seen this kind of behavior recorded anywhere.  I am assuming that the irony of all this is not lost on you. Here I am, talking about kidney donation only to hear that the doctor thinks that I have temporary kidney failure every time I go for a long run on a sunny day.  The doctor then proceeded to think aloud what further tests we should do to validate this. 1) Repeat the entire 24 test 2) collect blood at hour 24, etc....

The entire donor team will meet Wed (Oct 2nd). They are expected to get back to me on next steps at that time

Pre Surgery Screening in Chicago (Sep 24)

As some of you may know, I was in Chicago last week (Thu-Sun) to get myself screened as a kidney donor. My brother's kidneys have reached a chronic condition (where they are operating at about 5 per cent of normal capacity). He is getting ready to get into dialysis. 

I have been gearing for becoming a donor since summer. My brother felt that we had more time (likely till next year) to get ready. However, things have gotten worse suddenly.

I have gone through three rounds of testing (a blood test, a HLA/genetic matching, and a 24 hour urine collection test called CCT) in California. All those proved that I was a good match and was I headed to Chicago for the final round for being approved as a donor. 

I met with the donor transplant team which comprises

transplant nurse, nephrologist, surgeon, pharmacist, dietician, independent donor advocate/social worker, and psychologist. Luckily (for me) the psychologist was on PTO so I missed out on the chat with the shrink. I learnt a lot about the process/procedure, risks, and benefits to my brother. 

If you are like me and are typically impatient with long stories, then I will save you some time. At this time, there is a hiccup on the donor screening process. I have to wait for additional information from the doctors (likely on Wed) on next steps. So for now, I am in some kind of limbo state.

On the other hand, I returned from Chicago with greater clarity and more conviction about the donation process. My brother is on a kidney recipient waiting list (from deceased donors). In Illinois, it will be another 2 to 2.5 years before he gets one. He is considering switching to Madison, Wisconsin where the wait is about 9 months to 1 year.  The choice is between live donor (me) or wait for his turn on the list for a deceased donor.

My parents, and my brother have been both apprehensive and mildly opposed to my intent to donate. So information received on Friday helpful in having that conversation. As I found out, live donation had huge benefits

• Recipients with live donation had 60-80 per cent longer median life expectancy mainly attributed to 
• Better screening of live donor
• Shorter time between removal of kidney from donor to recipient. In a deceased donor case, kidney is typically not functioning for over 24 hours or so
• Kidney starts working in the recipient sooner (typically the same day)
• Reduced chance of rejection in the recipient
• better screening
• Because of genetic match between my brother and I. Identical twins are the perfect match but doctors were pleased with our match (apparently, we are 4 out of 6 on some chromosomal match)
• Finally, it takes one person off the waiting list (a big deal for people who don't have this option)

From a donor standpoint there was a study that showed donors had higher life expectancy than the average population. I was banking on that  Unfortunately, the doctor put an end to such expectations. Apparently, that study (like a lot of these medical studies) had lots of statistical problems.. Alas, no noticeable well-being benefit from donation

I returned from Chicago feeling convinced about my decision. My brother and my parents are beginning to come around this as well. Next step is deal with what the doctors come up on Wed (details of which are an interesting email in itself).

what about medical expenses ?

A lot of people have asked me that question. So all the medical tests have been paid by my brother's insurance. I had to visit Chicago to meet with the transplant team. The insurance did not cover those expenses. The donor screening requires a number of tests (most of them can be done in Quest Diagnostics). Typically, the transplant team provides a pre-paid work order that you take to Quest for the tests. Invariably, Quest will ask for your insurance without looking at the work order. You just have to patient with them, and explain to them. So far it has worked out. There are a few hitches.
I did receive a bill for a test. I had to point them in the direction of the transplant team.

There is one gray area. If the transplant team requires you to be treated for some condition, then who pays for the treatment is not clear. For example, in my case I tested positive for latent TB. My doctor says that I don't need to be treated for it unless I am becoming a donor. However, the transplant team is indicating that my insurance should be billed for it.

When I went for the onsite screening, the centre did offer me some information about agency that can provide financial assistance. I am not sure what/how much they provide since I was not looking for any but such seem to be available.

Kidney donation and diet

I had heard a lot of effect of kidney donation and diet. Specifically, I had heard that donors need to be careful about the level of protein in their diet. For example here is an article,  Healthy Eating After Kidney Donation!

The doctors and the dietician I talked to in Chicago both dismissed any such concerns. Basically, after the first week of surgery where I may some constipation I don't need to worry about my diet. 

Kindey donation and marathon running

I have talked to doctors at length and everyone has assured me that I will be able to resume my running in a few months after my surgery. They feel that the remaining kidney will take over the load (previously done by the two kidneys) and I should feel no noticeable impact because of the kidney donation.

There is no data on how soon I will be able to start running after the surgery. The doctors (IMO) are winging an answer when asked. Their answer seems to be anywhere from 2-3 weeks to 2-3 months. I really think they don't have a big enough sample size to guess. The only consistent recommendation is to not lift weights more than 10 pounds for 2 months.

What am I expecting ?
I am hoping to go for a light jog on the treadmill in about 10 days. But I will keep you informed.

For you runners, who are used to popping Ibuprofen (before, during, after) runs there seems to be a consistent recommendation to not have those anymore. Apparently switch to Tylenol. When I asked for a reason, what they told me was that Ibuprofen (and NSAID in general) were tough on the kidney and it may be safe to avoid them when you have only one kidney.

A brief introduction

A number of my friends and family wanted me to keep them updated on what was happening with the kidney donation process.  I started sending out brief updates via email. I also realized that a number of things I was discovering through this process was more broadly useful. As I was going through the process of gathering information, that given the rarity of live donor procedures the amount of information is very general and not specific to cases of ethnic backgrounds and/or specific groups (like recreational but serious athletes).  Of special interest to me was, how would my marathon running be affected in the pre-surgery, post-surgery recovery, and then for the rest of my life. Also, does my own ethnic background (South Asian) pose any challenges.
I am hoping to document my experience as much as I can and share via this blog, so that it may be useful for a much wider audience. Given that Google is likely to outlast my surgery and my recovery, I am hoping that this blog will be useful for others exploring live donation.

In the picture below, I am on the left and my brother is on the right.