Post surgery thoughts-1

The pain and discomfort was much worse than I imagined. I was really hoping to be a little sore but otherwise on my feet in every respect. I have never had a surgery before so I didn't know what to expect. I had been told that I would feel bloating and some pain in my abdomen. Also, I may suffer from incontinence. What I didn't expect was that I would wake up from a surgery with a "bump" like a pregnant woman. This bump along with sore and weak stomach muscles made walking straight almost difficult. I had gained 7 pounds (my base weight is about 160 pounds) in less than 24 hours mainly because of the gas they pumped into me during surgery and the fluids that were injected immediately after surgery. I would walk hunched over like an old man and further put tremendous pressure on my lower back muscles. Even after 10 days, the most troublesome part is the lower back pain. This still keeps me from sitting comfortably in the same position for a long time. However, I am happy that the pain is reducing with each day.

For comparison, picture taken before surgery and taken 3 days after surgery. The bump was bigger on the day after the surgey than what this picture shows.

EKG Before surgery

Selfie 3 days after surgery

12 day update after surgery

We (Ishita, Saniya, and I) came back to California over the weekend. My surgeon cleared me for two important things: drinking alcohol, driving an automobile (though not necessarily in the same order or simultaneously. The doctor also advised to me to stay off any running for another two weeks.  I went to work on Monday for a few hours and had a full day at work today/Tuesday.  I could choose to work from home or even to take time off, but I am eager to get back to some form of normalcy. Physically, I am not completely back to normal (pre-surgery state) but things are improving, though slower than I want/wish.  More on my hospitalization and first week of recovery in future blogs.

Today's updates - 10/14

Murali will be discharged from the hospital today between 1-3 pm and will head back home. He seems in good spirits and has his energy back. 

Rajesh is recuperating in Madison and slowly getting better. He can climb stairs and can walk around by himself - he stopped taking pain killers. He tires easily but every day is better than the day before.

He will have his first checkup this Friday and after that we with his parents will head back to Chicago. From there, we will be heading back to CA.

Day 3 picture

Brothers Pazh (a)yannur progress continues at a remarkable rate thanks to the awesome medical team we have at UW. As you have noticed - Rajesh is back to blogging and you can read some first hand accounts of the surgery and post surgery recovery. In the meantime, enjoy the attached pic

Good morning from the room in UW Hospital Transplant Floor

Greeting everybody. It is Saturday morning and I have finally gotten on to my laptop to write something down. I was completely off the grid for two days (and didn't miss it).  The doctors have removed all the bandages and I can get released from the hospital to my friend's home. I am still trying to decide what to do. I will have breakfast, walk around and then decide. My brother, Murali is doing great. His new kidney is doing well and he says that he feels more energetic than before the surgery. His kidney numbers (creatine, BUN) are coming down to levels seen in a person with a healthy kidney. So all good on that front as well.

Just caught a glimpse of all the emails, and best wishes that have come in over the past few days. Thank you very much.

In the coming days, I hope to write more about the post surgery experience, hospital stay. 

Day 2: Dec 11th

Rajesh is continuing to improve today although his pain is worse today. That is expected - Dr Foley assured us. He can order food from the menu and he can go to the bathroom by himself - two major developments since yesterday. I slept in the hospital last night and I could write a whole blog post on what "sleeping" means in a transplant floor - but I will withhold my bloggers urge for now.

Murali gave us an unexpected surprise this morning as early as 6:30 am when he walked by himself to Rajesh's room. He felt good - he said. All the vitals look good and he is also improving well.

As of now, Rajesh will be released on Sat and Murali will be released on Monday.

A picture is worth a thousand words

Muralis surgery also closed

We just heard that Murallis surgery closed as well and we are waiting for him to be moved to the recovery room 

Rajesh's surgery is over

Dr Foley thought he was a hero and we all agree. He mentioned that he was one of the fittest donors he has seen and the surgery was very smooth. The left kidney was taken out and will go in the right side of Muralis. Rajesh is indeed our hero - and we are deep in thought on some cool T shirts we can design for him.

We are about 10 folks sitting in the waiting area. Thank you Sati and Sayoni for coming over from the Bay Area for being with us. Thank you Minnie for coming from Austin and  a special thanks to Mana for making this one week trip from India to be a pillar of support, strength and humor for us. Thanks also to Rajesh's parents -  for traveling from BLR - their conviction, strength and faith have guided us throughout the day so far. We are waiting for Muralis surgery to go over well. Last but not the least - our deepest thanks and gratitude go towards our long time friends - RR, Deepika for hosting us, our friends, for cooking us delicious food for umpteen meals and taking time off for looking after Saniya, picking up and dropping off many many times. They were the main reason Madison was also our preferred choice. Thanks to Amol and Amit ( their kids) and Aunty for being there for us all the time 

Status update at 9:26

Rajesh's surgery has started - all is well do far according to the nurse. Murali is being rolled into surgery right now. By 5 pm today both will be transferred to the general room by 5 today

Morning of surgery

This is Ishita / Rajesh's wife. I will be blogging throughout the day. Rajesh's surgery will last from 7:30 - 11:30. After that he will be in recovery for another hour or two and then transferred to a private room. He will be groggy for most part of the day

Last day before surgery

Went to Madison for a pre-surgery checkup. Everything looks good. Met the surgeon Dr. Foley, for the first time. He decided (in front of me) to take the left kidney. The left kidney goes into the right side of my brother's abdomen.

The surgery is at 7.30 Am tomorrow, Dec 10th. It is likely to last about 4 hours with another hour of recovering from anesthesia.

I was asked to take a laxative at 6 Pm as preparation. It's about 9 Pm and it has not worked. Honestly, I am not too unhappy about this.

We spent the evening at my friend Rajesh's place. Here are some pictures. 

Countdown to surgery begins

I am on my way to Chicago. Waiting at the airport. I had an eventful morning. Ishita (my wife) and Saniya (my daughter) came to airport to drop me. When I reached SFO airport I realized that I had left my laptop bag at home. So after a few minutes of panic and exasperation I went to AA counter and changed my flt to the next one. Back at the airport about 2 hours later. Oh....during the mixup I had left my license at the American counter. Retrieved that and now I am all set....

Ishita and Saniya will join me on Wed (day before surgery) in Madison. Surgery on Thu 10th.

If you know of any kidney transplant related jokes, videos please post..

Solutions for dealing with kidney shortage

In previous posts I have mentioned about growing number of patients waiting for kidney and the large number of patients who die waiting for a kidney.  Here is a promising solution:

1. Public Advocacy: This is the low hanging fruit. We can increase donor organ awareness.  More number of people can sign up to become organ donors via their driver's license or otherwise.  Over a 100 million people have signed up to become donors and we can probably get more signed up here at organdonor.gov.  There is also a site which I like a lot which has become a resource for donor advocacy (waitlistzero.org). This site helps donors with lost wages, travel as well as with paired kidney. But to put it bluntly, is clear that eligible donors are not dying at rate fast enough to make up for the kidney shortage. 
2. Science: Here is a 4 minute audio blurb on NPR about scientists trying to grow kidneys from your own stem cell (link to npr site with audio and text description). One of the benefits of this is that recipient will not need any immuno-suppressants and that will a big deal. 
3. Market Economics: Perhaps the most controversial, but this involves creating some form of regulated marketplace for organ sales. In past postings I have talked about this happening in Iran (where there is no waitlist for organ donors). There are number of prominent economists (including Nobel Prize winners) who have given this some thought, Becker/Posner. Becker, Posner think the market price is around $15,000 while some others think a price of around $50,000. Along the same lines is another thought from Rohit Dhar where he suggest that instead of a marketplace, Medicare buys organs and provides it to recipients. This is not such an outrageous thought because Medicare spends 100,000s of dollars on patients with kidney failures. This would be more cost efficient, alleviate shortage problem, and provide public oversight.  This is a complex topic (from a policy standpoint) but to most economists this is not a problem that cannot be solved. 

I have enumerated them in the order of realistic outcomes. On 1), Clearly, it is up to each one of us to become organ donors (if we have not signed up).  So if you are reading this (and have not registered), then consider registering.  We can also do to support option 2) by ensuring that we support public funding (NIH, etc), oppose legislation that bans stem cells research. On 3), I think we are far from having a non-academic discussion which is what we need to make progress on this. But think about it, our own lives or lives of our loved ones may depend on this.....

Thoughts on Thanksgiving Day

Besides the thought of having a wonderful, sumptuous dinner and upcoming holiday season (and the company wide shutdown) there are few other things on my mind

• I am so thankful that I am in a position to help my brother. Truly a "good for me" moment that I am thankful for
• I am thankful for friends and family who have offered their support and best wishes during this journey
• I am thankful for friends and family who are traveling to Madison for the surgery. It's going to be a blast. (For members traveling from warmer climates, it will be a chilling experience. But a trip to State Street and Memorial Union on Thu/Fri evening will bring back some memories of their own youthful/college days)
• I am thankful to my friends Rajesh and Deepika who are going to host us in Madison in two weeks time. 

How much is a kidney worth

This is really hard question. Clearly, to a recipient especially those in dire need of it is worth a lot. Further, given that with the exception of Iran no country allows the sale of kidneys. But here are some data points.

• Kidney trafficking in the US: A kidney trafficker was convicted for trying to sell a kidney for $120,000
• Kidney prices in Iran: According to Wikipedia reference it varies between $2000 to $4000.
• Disqus: This is a blog devoted to kidney sale where there is a post about 9 days ago offering donors $150,000. The doctor and hospital appear to be legitimate. 
• Kidney for sale for $500,000 on blogger.

Risks associated with kidney donor

This data is from WaitList Zero, an advocacy site for kidney donors.

• Chance of death during surgery:
• Risk of death in surgery is 0.031% (3.1 in 10,000) for all donors.
• Risk of death in surgery is 0.013% (1.3 in 10,000) for donors without hypertension.
• Risks from surgery related complications: Based on 2010 study with 6331 donor between 1995 and 2005 findings were 
• Kidney donation was associated with an 18.4% complication rate.
• Reported complications included bleeding (4.3%), infection (4.2%); and respiratory, (4.5%), Gastro-intestinal, (6.1%) urinary (1.7%) tract complications.
• Complications were most pronounced in older, obese, and hypertensive donors.
• High volume hospitals (>50/year) were associated with significantly lower complication rates.

Here is a sobering article from NPR  on organ donation consequences for some donors. The article is stating that the data on long term effect of donation on donors is scant and advocates that the system should track donors for a longer period and more consistently to monitor for long term effects. 

Last marathon run on two kidneys

Ran my 15th marathon on Saturday, Nov 15th. Finished in 3 hr 29 min. This was my second best time ever (and fastest in the last 15 years). It was so good that my finishing time meets the qualifying time for my age group (in 2017 by which time I will be 50). The transplant unit in Madison wanted a gap of at least 10 days from the time of the marathon and the surgery.  There is no data/study to support this recommendation. Three days after the race I feel completely fine and it appears to me (on the outside) that my body (and kidneys) have completely recovered.

The doctors have assured me that one kidney will not affect my running in any noticeable way. I should ensure that I am hydrated but that is good advice even for people with two kidneys.
To keep myself motivated and test this theory, I have a personal goal to finish another marathon within one year (on one kidney) and finish within 10 minutes of the above time. 

Some statistics about kidney transplants

Here is an excerpt from an article from New York times

Last year in the United States, more than 4,000 people died while on the waiting list for a new kidney. An additional 3,600 people left the list when they became too sick for a transplant.

The kidney shortage is a global problem. The world’s need for kidneys is growing alarmingly — largely because kidney failure is one consequence of diabetes and high blood pressure. Yet the supply has barely increased. In 2014, there were 17,106 kidney transplants in the United States, but more than twice that many people went on the waiting list.

In the coming days, I will post more on what is being done to address this gap. In the meanwhile I am eager to get comments. 

Good for you

When people find out my upcoming organ donation, I get a range of comments usually with adjectives like generosity, admirable, courage, sacrifice, etc. The one I like the most is when someone says "good for you" and typically this is often said by strangers like a nurse, technician, etc when they find out about it.  

So in my own way, I was trying to list why it was good for me and then I found this list in WaitlistZero which pretty much captures it. 

Benefits reported in the scholarly literature include

• Deep gratification in helping another person. 
• Desire to improve the recipient’s quality of life and health
• Improving their own quality of life
• Avoiding the loss of the loved one
• Improving the quality of life for the recipient
• Increased self-esteem
• Improved relationship with the recipient
• Positively influencing the lives of family and loved ones.

There is additional research on well-being/happiness that indicates gratitude can increases happiness, so there is additional derived benefit. 

Happy Monday

It is about four weeks to surgery and I wanted to share this funny clip from Dumb and Dumber 2 on kidney donation.

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.