My Kidney disease- day of surgery (Day 0)

Sridevi and I were picked up by RR and taken to the UW hospitals, two blocks away. I checked into the hospital at 7:30 a.m. My parents and sister-in-law Ishita, Mana, Minnie, Sati and Sayoni met me there. We took some pictures and I quickly went into the pre-surgery prep area.  There, the nurses did the routine triage (b.p., temp, weight etc), changed into the hospital gown, started an i.v line and waited. Rajesh's surgery had started at 7:30.

My surgery was scheduled to start at 10:30a.m.  Among my visitors to the pre-surgery area were the anesthesia team, and the surgeons, Dr, Luis Fernandez and Dr. Stahler.  Dr. Stahler looked at the right hip area and found the large scar from my earlier pseudotumor surgery and decided that the new kidney would go in on the left side.  Later, Dr. Fernandez marked a smiley face on my left side where the incision would start.

About 9:30 a.m. I received my bolus dose of Factor (Advate, 3200 IU).  My family friends outside visited me in the room and we chatted and took pictures and at 10 p.m. the nurse received a call from the surgery room to ask me to be wheeled into surgery.

My bed was moved through multiple hallways for about a minute before we entered the surgery room.  There were 5 or 6 masked people in the room.  I looked around and noted a sink and 2 or 3 long tables with surgical instruments along the walls of the room.  I was transferred to the surgery table and my arms were spread out.  Since my elbows would not be held straight they supported it below with rolls of towels.  My knees were similarly supported with a pillow.  They forced oxygen into my nostrils.  Over my left shoulder behind me on the ceiling was a large TV screen where I saw Rajesh's surgery in progress.  Cool.  It looked like a few hand were working on him.  Comfortably situated I went under in a flash.


I barely remember anything about the time immediately following the surgery, the recovery room. My first recollection is from my hospital room for the next 4 days where I remember someone, probably Deepika, our local host walking in with a bunch of balloons.

I remember having hiccups, or was it gas and some nausea and pain.  I also heard voices around me saying the b.p. was low.  Later, I heard that I was brought into this room around 5 but really got my bearings only around 8 p.m.  I remember Rajesh had walked into my room with a walker and shaking hands with me.


Post surgery I ended up with a long curved incision on my left side held together by staples, a urinary catheter, JP drain, a stent in the ureter and Rajesh's kidney- my third kidney working hard inside me.  The nurses were saying that bag attached to the catheter was collecting a lot of urine.  This must mean that my new kidney was working.  Future labs would verify this.

My Kidney disease- the pre op visits Part 2

My appointment at the hematology clinic was scheduled at 11:00 but I was running an hour behind.  I met with Dr. Sheehan and his resident.  They had received the treatment plan to control excessive bleeding due to hemophilia during the surgery.  They would give me 3200 IU of Advate (recombinant Factor VIII) prior to the surgery and then every 12 hours post.  I went back to Transplant clinic.  Dr. Luis Fernandez, surgeon, was to meet me then but was not able to as he was pulled into surgery.  I was told that the surgeon would meet me prior to the surgery the next day. After a wait I left to the anesthesia dept.  They asked me if I had any prior surgery and any allergies (shell-fish) or problems with anesthesia (none).  Then on to get an ECG.  I met some with the financial counselor once again upon request.  I wanted my Medicare related questions answered.  Based on my conversation I agreed to sign up for Medicare Part A and Part B which would be effective Dec 1.  The premium for Medicare is $105, billed every 3 months.  Signing up at this time was more for peace of mind and to avoid complications later on in life. My final stop was admissions.  I got a printout of my day's visits and the lab results. Around 3 pm I received call with my surgery time.

A brief note on what I learnt on signing up for Medicare Part A and Part B.  I have some documents I received at UW with answers why signing up for Medicare at the time of surgery would give piece of mind.

Returned to RR-Deepika 's and had an early dinner.  There were a number of pictures taken that evening to kick-off the transplant surgery.  UW Hospitals has reserved a room for us at the Best Western near the hospital.  We went there to sleep.

My Kidney disease- the pre op visits Part 1

It's a 2.5h drive from home to Madison made it necessary for me to have an early dinner the day before the pre-op visit as I had a 12h fast requirement for labs (blood work) at 7:30 a.m. followed by CT abdomen at 8:00 a.m. and headed for some breakfast at the UW Cafe.  Earlier that day when I first registered I got the itinerary (test, room no.) for the day and a wrist band with a "do not take it off" instructions.  This band had my name, d.o.b and QR code.

My next appointment was the Pre-op Physical Exam at 9:30 in UWH Transplant Surgery.  The following was completed and some instructions to follow in the evening.  Here are some details:

My vitals change significantly post-transplant.

Vitals

Blood Pressure:

145/84[L arm reg cuff[

Pulse:

76

Temperature:

98

Height:

5' 6.575" (169.1 cm)

Weight:

145 lb 14.4 oz (66.18 kg)

Patient Instructions

First Day Surgery Kidney or Kidney/Pancreas: 

Complete the following today:

EKG

Anesthesia Screening

Admissions

Diet: 

Light Lunch today.

Start clear liquids only at 5:00 pm.

Nothing to eat or drink after midnight.

The pharmacist came by and went over my meds and gave me the following instructions and a prescription for bowel prep.

Bowel Prep: Bisacodyl Suppository

Medications:

Take morning of surgery : amlodipine, levothyroxine,

Take evening prior to surgery: Advate, entecavir, bisacodyl suppository, lanthanum

Hold morning of surgery: enalapril, hydralazine, lanthanum, multivitamin, Metameucil

Hold evening prior to surgery: ferrous sulfate, Metameucil, Pericolace

A Transplant nurse gave me a ziplock bag with the wash material.

Hibiclens Wash: 2 packets

                         : Wash neck, chest, and abdomen for 2-3 minutes the night before and the morning of surgery

Surgery staff will call you the day prior to surgery with your arrival time and surgery time.

I got a call around 3:00 p.m. and found out that my surgery was to be at 9:30 a.m. with a check-in time of 7:30 a.m. the next day.  

Please call the transplant clinic or your coordinator if you have questions or concerns.

            Business hours:608-263-1384 

            After hours:1-800-323-8942 

For Surgery specific questions please call First Day Surgery Center (M-F 6a-7p)

           608-265-8857 

           800-323-8942 

I was asked to have my last meal by 6 p.m., clear liquids after that until midnight and no liquids at all after midnight. I was also asked to use a laxative suppository to clear out my bowels. 

My Kidney disease- some final thoughts pre-op

Earlier this week I had an interesting email conversation with Dr. Rodby (RR), my earlier nephrologist, before Dr. Dodhia.  I was telling him how I had successfully avoided dialysis and went straight to a transplant.  Mind you, this was Dr. RR's goal for me 3+ years ago when he asked me to get on RUSH's transplant List.   He had also told me that CKD always worsens with time, even when my creatinine was around 3. So here's what Dr. RR had to say to me:


"wow, you (we) did bypass the need for dialysis.

your experience is unique and you must appreciate that this was a function of your diligence, my open-mindedness, incredible communication, and a bit of luck.

While you can promote these factors (who wouldn’t, it is like promoting world peace) in the end it wouldn't work for most folks and encouraging avoiding dialysis may not be in many’s best interest if any one of these factors is not 100% as it was in our case. "

I realized the truth in his statement.  Most folks with CKD are not so fortunate.  I could not have reached this stage without the support at home from my wife, Sridevi, without her customized meal preparation catering to the 'renal' diet; making sure I take my meds on time, and the soothing effect she had on me to stay focused on what I needed to do that day.  When Dr. RR talks about 'diligence' it's not me alone-it is Sridevi and my close and concerned friends circle (a.k.a the chaddi group) who always looked out after my diet limits at gatherings- a collective diligence that helped. 

I wish to thank Dr. RR for his open-mindedness and trusting me and treating me based on the data points observed at the 10s of blood draws.  He would educate me on the purpose of each new medicine that would get added.  We have exchanged over 200 emails, 10s of text messages and even had phone consults to avoid the long drive into Chicago's downtown traffic.  Often his responses would be very cryptic but then it was a matter of tuning.

My parents from India were always encouraging me to stay positive and never bugged me too much.  Their support from afar was equally necessary.

Finally, and most importantly, my brother -Rajesh, without whose relentless and timely follow-up with his investigations made everything fall in place conveniently.  No material value can be placed on his generosity of donating a kidney.  I am also thankful to my sister-in-law, Ishita, and niece, Saniya, for all the support they gave Rajesh during this process.  All this might be the 'bit of luck' that Dr. RR alludes to.


In short, I feel avoiding dialysis has not been simple.  It was a collaborative effort.  However, this is not impossible.  In a few days after my surgery I will post a 'top ten' list of what would be important to make this possible.

For now I move on to UW for my pre-op appointments on Dec 9th and the transplant surgery on Dec 10th.

My Kidney disease- the final week

Over the last weekend a number of family members have reached Chicago- my parents (India), Rajesh (brother, San Jose, CA), Rajesh's sister-in-law (India) are here.  Friends visited or called.  All local friends have offered to help out as needed.


I'm into the the final week of preparations for the surgery on Dec 10th.  I have list to check off:


Work:  Handing over some of my reponsibilities to colleagues (this has been work in progress for a week now).  Setting up out-of-office messages.  Informing some team leaders of my extended absence.  Submitted an article for publication in the company magazine.  I expect to be back at work, working from home, on Dec 21st.  The plan is tom work a half day tomorrow (Dec 8th) and then head to Madison.


Packing:  I have been asked to bring loose fitting clothes for the hospital stay- so pyjamas, loose fitting shirts, skid-proof socks. Of course, not leaving home without my electronics- laptop, iPad, phone etc.


Pre-operative appointment packet:  All appointments for Dec 9 starting with a 12h fast prior to blood draw at 7:30 a.m., CT scan, EKG, meeting the Transplant team and the Hematology team.  One of the reasons for the CT scan at this late stage is because: 1. I have never had one for the abdomen, and 2. I have had the pelvic psuedotumor surgery in 2003 in the region where there new kidney would be transplanted.  At this time my Hemoglobin is on target for surgery at 10 but the other CKD numbers are worse: creatinine 6.4, BUN 127, eGFR 9.

My Kidney disease- Medicare?

I have been told a few times at RUSH and also at the UW transplant evaluation visits that I would become eligible for Medicare if I every went on dialysis or had a transplant.  Now that I am at the footsteps of a transplant I trying to understand if I should apply for Medicare.  The UW social worker had told me that once the transplant happens the financial counselor would come by me and sign me up for Medicare and that I would benefit from Medicare Part B.  Medicare Part B helps cover:

Medicare Part A (Hospital Insurance) helps cover:

1. Inpatient care in hospitals
2. Inpatient care in skilled nursing facilities (not custodial or long-term care)
3. Hospice care
4. Home health care

Medicare Part B (Medical Insurance) helps cover:

1. Services from doctors and other health care providers
2. Outpatient care
3. Home health care
4. Some preventive services

I had good coverage through my employer's plan at CIGNA. I knew that CIGNA would still be my primary coverage after transplant for 30 months and Medicare (if I took it) would be secondary.  But then Medicare would only cover for 36 months following a successful transplant. Hence for 6 months (past the first 30 mo) Medicare become my primary insurance and then it flips back to CIGNA.  This is my understanding and it very confusing.  A great deal of it is explained in in the manual here.  However, most of it is irrelevant to me as a majority of the patients go from CKD to Dialysis to Transplant.  I have bypassed the need for dialysis due to a living donor.  So some questions remain which I will confirm and take action based on my chat with the UW Social Worker at the pre-operative visit on Dec 9th.  What I have learnt is that it is prudent to sign up for Medicare Part B and Part A upfront to cover for the out of pocket expenses incurred for the immunosuppressive meds.  These meds will be lifelong and so their cost (out-of-pocket, OOP) matters.  I spoke to CIGNA Home Delivery Pharmacy and found that the OOP is reasonable as most drugs are available in their generic form. Hence, I need to work the cost angle out- OOP vs. premium for Medicare Part A/B and the long-term impact of declining Medicare coverage.  More on this very important aspects in the coming days as I learn more.

My Kidney disease- hemophilia care

While Rajesh and I were coordinating who's coming to Madison for the surgery, where everyone will stay, how we get to Madison I was a couple of important items on my checklist very relevant to the transplant surgery.


My nurse coordinator had informed me that the target threshold for hemoglobin was 10. When I started on the Procrit shots my Hb was at 7.4 (severe anemia).  Every week I would get a blood test and my Hb would rise by 0.4.  So as of today my Hb is at 9.6.  I have two Procrit shots before the surgery and my nurse has informed me that at this level the Hb will not be a show-stopper.  The only instructions I have is to stay away from contact with people with a cold and runny noses. I should be good in this front and wash my hands regularly.


The other (major) care is to manage my bleeds due to hemophilia.  For this I contacted the hematology nurse at UW, who in turn contacted my nurse and doctor at RUSH (my local hematologist team ) to get a treatment plan.  So the plan is to dose me with Factor VIII (Advate) up to 100% just before the surgery and then every 12h while the hospital.  Continue Factor infusions for two weeks once at home also.  The UW pharmacy has 22,000 U of Advate ready for my use. They plan to place a PICC line.  This will help my venous access a lot specially from poking myself twice a week at home.  The down-side, of course, is the line is site for infection and will need to kept 'clean'.  Infection is certainly one of the biggest safety concern in my immune-compromised state post-surgery.  I am working with my the home health care system who will send a nurse home once a week to change the dressing around the line. 

My Kidney disease- transplant venue

In trying to compare RUSH Vs. UW for a kidney transplant at first I sought the approval of CIGNA.  Caryl did the research and got back to me that UW would be covered by insurance for a transplant as an in-network provider. For a living donor transplant it was my choice, once the donor was approved, where I wanted the surgery done.  Here are some of the main considerations in favor of UW over RUSH:
1.  Experience:  UW has done (5x) more number of living donor kidney transplants (Source: www.srtr.org)
2.  Second Opinion:  Both Rajesh and have had extensive conversation with nephrologists and the opinion was if we had a choice UW would be preferred for the following reasons:
UW is an older center with longer-term experience
There are risks to the donor in this transplant and UW does a lot more, per period (once again 'experience')
3. Follow-up practices:  UW would require me to follow-up in Madison two times within the first 6 weeks in Madison.  All future follow-ups would be in Rockford, approximately half the distance to Madison.  With UW, I can have all my labs drawn at Quest which is a 1 min drive.  for RUSH the follow-up plan would require me to go to RUSH (1h each way) twice a week for the first 5-6 weeks for blood draws and drug adjustments.   
4.  Convenience: We have close friends and their established network ever-willing to support us prior to, during and after the surgery.  This is a very significant benefit, considering the time it would take to go from home (Aurora, IL) to Chicago.  This times the number of friends and family members who would want to visit the hospital.


Once the venue was final Rajesh and I agreed upon the date (we were given a choice of dates on the UW calendar) and we started to plan the logistics.

My Kidney disease- donor decision

One of my toughest challenges was to decide to or not to accept Rajesh's kidney.  I had agreed to his getting tested since I knew that with the way the medical system worked it would be a lengthy process. Rajesh was simply an option when I first contacted UW for listing.  It was like a standby.  There were a number of reasons for this.
1.  I had no idea of the impact of life with one functioning kidney. Rajesh had a family with a young daughter.  Would he be able to run etc..
2.  What if the remaining kidney starts to fail on Rajesh.  We don't want to have two CKD patients in the family.
3.  I had a good chance of getting a kidney at UW quickly once I was on the list


Then I read through the paper that Rajesh had sent me a link to a paper on the effect of running a marathon on numerous blood test lab parameters.  I was particularly interested in the Creatinine, BUN, Ca, Na, P values which are impacted in CKD.  The change post-marathon was minimal.  Plus I also had saved off Rajesh's test results pre- and post a long run and did not notice a difference in the values. Rajesh had done a lot of research before going down this path.  He had started to blog this findings.  I reviewed some on my own also.  I was a little more convinced that he would be ok as a kidney donor.


Meanwhile, Rajesh got approved as a donor at RUSH provided he got his TB treated.  Here again, there were differences as to the terms of treatment.  RUSH required all 12 doses to be completed and UW said a minimum of 4 doses.


Once I was convinced that Rajesh would be the donor it was time to compare 'apples to apples' between the 2 centers and choose.  I was back to the CIGNA Case Manager for some resource and approvals.

My Kidney disease- know your numbers

Data sharing with UW


Based on Caryl's advice both Rajesh and I sent all the tests results from RUSH that we had over to UW.  In addition, we authorized UW to get all future test results and CT/X-ray films and reports from RUSH data bank.  I also signed off on approvals to access my test results released to My Chart systems, the patient portal, at various hospitals in Chicago.  This has become the standard now that patients have different doctors tied to different hospitals.  Each hospital requests you (optionally) to sign such forms to share data.


I am a results 'pack-rat'.  I found it very useful.  First you have a right to get your results.  Quest diagnostics (my lab) has to be authorized to send me (think paperwork) my results.  If I went for blood draws on a Saturday Quest would Fax me my results by early next Monday morning.  Having my results helped me in multiple ways:


1.  I was able to monitor trends- is the K high last week, has the eGFR changed.  This helped me research on the foods I can/cannot eat and modify my diet.
2.  When you are familiar with your results and trends, its easier to speak to your doctor.  The doctor begins to trust your judgment a lot more when you can speak the 'trend language'.  It helps with dose adjustment and new meds.  I did this with my b.p. meds with Dr. Rodby and with Procrit (EPO) with Dr. Dodhia. 
3.  As noted above its easier to share the results quickly at crunch time with a new doctor or facility.  No one has greater urgency to get things done as much as you do.  So KNOW YOUR RESULTS WELL!!
4.  Also, as in Rajesh's case, in case some numbers get overlooked at the first pass, you can bring it to the doctor's attention.
5.  It's easier to get a second opinion and ask intelligent questions if you know your results well.

My Kidney disease- Insurance matters

Case Manager


My insurance company through my employer was CIGNA.  RUSH was my approved primary center per my insurance.  Every potential living donor can only be evaluated at the primary center. I had the option to be evaluated and listed at multiple centers (my choice) but the insurance would cover services only at the primary center. CIGNA appointed a case manager, Caryl Taylor, who stayed in touch with me the entire time I was on a transplant list until dialysis or a new kidney.  A case manager becomes a very significant resource for you in many ways:
1.  She is a nurse and an insurance employee.  She knows the insurance rules
2.  She is a patient advocate at the insurance and will guide you to avoid the pitfalls.
3.  She  has the resources at her fingertips and will guide you through the process and requirements for multiple testing. She'll guide you to find wait times, Organ Procurement zone, in-network dialysis or transplant centers.
4.  She is the one to consult before you gets tests done- some tests require prior auth else you foot the big bills when the claim is processed.
5.  She is the one to approve your primary and secondary listing status or change.
6.  She also help you with 'additional insurance benefits'.  My insurance plan has Travel Benefits where it pays certain benefits to both th patient (recipient) and the donor if the transplant were to take place over 60 miles from your home.  Caryl approved this benefit and sets the $ limits and sends out the credit card.

My Kidney Disease: transplant thoughts

Early transplant thoughts (April-Oct)


A few things triggered the urgency for a kidney transplant in my mind:
1.  Dr. Rodby had started mentioning the dread 'dialysis' word in his emails since April 2015.
2. The 'restless leg syndrome' hit home in late August and I felt dialysis was imminent
3.  Rajesh's test results were a turning out as a favorable match (Sep )
4.  In Late Sep I got some good news at my UW Eval visit.  Even though the waiting period on transplant list there was 2.5 years for my blood group if I switched to UW as my Primary transplant center they could use my RUSH listing date as a start date for my waiting period.  This meant that I already 'paid-up' on my time on the UW list and could get a deceased donor kidney any day.


My single goal at that point was to avoid dialysis.  I was confident I would get a kidney soon one way (Rajesh) or another (deceased). Already at Stage V I modified my diet (dropped the chicken, brought down the toxic BUN levels and started on the Iron tablets to boost the Hb).  My blood draws went from once every 1.5 months to every other week in early Oct.


Next major thing on my to-do list is to look into the insurance coverage for a surgery at UW.

My Kidney Disease: UW Listing

Listing at UW Hospitals, Madison

I had always known that you could be listed at more that one center for a deceased donor kidney.  If you choose to go 'multiple listing' make sure that the center belongs to a different Procurement zone (more details forthcoming a little later). Madison was.  One reason I had ignored it was that this would require me to follow-up annually at more than one transplant center just to stay listed.  Meaning more time away from work, more tests.  I had read in the online newspaper article that Rajesh's friend (another Rajesh) who lived in Madison sent me that the wait list there was approx. 1 year.  This was significantly better that 5 years at RUSH (I had just completed 2 of those years on the RUSH list).  I contacted UW and sent them all the test results I had ( my google drive came in handy to share my test results) and also a link to my blog on the RUSH listing to the nurse coordinator - Jess.  This was in Jul 2015.    I got an eval appointment for end of Sep.  Later that same week I had the third annual follow-up for continued listing at RUSH.  I sent these results over to UW as I received them.  I kept UW updated of all the blood test results, medication changes, doctor follow-up visits, and Rajesh's progress at RUSH.  I also got the name of the Living Donor coordinator at UW and sent it to Rajesh.

A week after Rajesh's visit RUSH wanted him to see an infectious disease specialist as he tested positive for TB and there was a small chance of that transmitting to me as via his kidney.  There was a lot of confusion about why this was not discovered earlier as well as what the best course of action/treatment was.  At my RUSH follow-up I had asked the surgeon what a post-transplant follow-up would look like.  I was not quite pleased with the follow-up protocol they had as it required me to visit RUSH twice a week for 5-6 weeks immediately post-transplant.  This was mainly for blood tests and dose adjustments for anti-rejection meds.  I had asked the same question earlier that week to the UW surgeon and the nurse.  They require me in Madison twice in the first 5 weeks to meet with the surgeon.  All blood tests would be local and results and dosage adjusted over the phone and email.  More convenient.

During my visit in Oct 2015 to see Dr. Paner for my annual follow-up for RUSH I was telling her about a potential living donor transplant at the end of the year.  She had noticed that my Hb was down to 7.4 (severe anemia) She brought it to my attention that I would need to get the Hb up in time for the surgery as this would be necessary.  I had already started taking Ferrous Sulfate (Iron tablets) a few weeks earlier but this did not prevent the Hb from dropping. I could not get a blood transfusion prior to the transplant.  I asked Dr. Dodhia for a prescription for Procrit.  I started on weekly injections in mid-October.

My Kidney Disease: Diet

ER visits and Dietary changes
The emphasis on lowering the K intake was significant.  This rules out two of my favorite foods- potatoes, bananas and many nuts. A baked potato or a single banana high in K (almost to 900 mg).  Previously, in Sep 2011, I had to rush to the ER as my K value in blood was 6.3.  Anything over 6.0 is considered and emergency.  At the ER they gave me a dose of Kayexalate and this quickly cleared the K on blood.  I was admitted to the hospital for 2 nights.  I learnt that high K (hyperkalemia) can cause heart problems and is capable of stopping the heart.  And unlike b.p. hyperkalemia is not measurable at home.  Once out of the ER, Dr. RR suggested that I take Kayexalate after I eat high K food.  High K was clearly caused by CKD but is also promoted by ACE Inhibitors- in my case the Enalapril.  However, Dr. RR asked me to continue with the Enalapril for its kidney-protective value.  I started on Kayexalate, once a week in addition to avoiding high K foods from the list.

My next trip to the ER was in Feb 2013, again for high creatinine and potassium.  I had just returned from India and had a fever upon arrival.  That's when I learnt that dehydration can cause your serum creatinine to be high.  After this started drinking more water.  I was advised to have 3 lt. per day.


So now I had lowered my Sodium (Na), Potassium, protein and increased the water.  Lowering the protein started to have its effects.  My muscles started to weaken noticeably in about two months. Increasing the water caused the Na levels in blood to go down to dangerous levels.  Dr. RR asked me to cut back on the water.  He said that low Na would lead to dizziness and confusion.  I had no such symptoms.  Moreover, my body got used to the water intake and I would feel thirsty if I reduced the water.  At that point Dr. RR decided to removed the HcTz portion (diuretic) of the Enalapril-HcTz.  My b.p. remained stable and so I continued with the 3 b.p. pills and the Na levels came up to the low end of normal range.


At my first KTC visit I had picked up some literature that described changes in the levels of Phosphorus (P) and since I did not see thiese tested asked Dr. RR if was necessary.  He added it to my standing order for monthly blood draws.  My P came back abnormally high and so started on phosphorus-binder- TUMS.  TUMS is a source of Calcium (Ca) which binds P.  Along with this came a list of food high and low in P.  My diet changes once again.  I started cutting down on dals (lentils) and rotis (wheat) and being vegetarian at home I was dependent on eating chicken for my proteins. Even chocolate was taboo. Another unintended consequence of high P was that the TUMS taken to counter it caused constipation for which I started to use Metamucil and Pericolace tablets daily.  The Phosphorus levels came down a little but not by much and the doctor added Calcitrol.  Calcitrol is a form of Vitamin D given to increase the Calcium levels which would help with the P reduction.

Along with these changes 3 very significant parameters also started to change.  The hemoglobin (Hb) started to drop.  I have always been chronically borderline anemic probably due to the early stage CKD. My body had adjusted to the lower Hb levels without a problem. Along with the rise in the creatinine my Hb started to drop below 9 mg and I started to sense it.  I would have to stop more frequently to catch my breath.  Dr. RR had already introduced erythpoietin (EPO or Procrit) as a possible treatment to shore up the Hb.  I was avoiding this as this would mean going to a clinic to get this injection weekly. This was inconvenient.  Plus it was not too bad.  Along with the limited breathlessness came a sense of tiredness increasing towards the end of the day.  Well, later on I had to start on Procrit because it then became a necessity.

The second value of importance is the eGFR (estimated Glomerular Filtration Rate).  This is a calculated estimate and measures how well your kidney is filtering fluids.  This is a parameter used in CKD staging also.  For example, eGFR of 15-30ml/min would be Stage 4. Well, I was at Stage V, the last CKD stage, in Jun 2015.  My eGFR was 11. Dr. RR had started mentioning 'dialysis' asking me to be mentally prepared for it.

The third number that really had me turn towards dialysis was the blood urea nitrogen (BUN).  This was part of my monthly blood tests and started to climb noticeably.  Like creatinine there was no way to control these values except through diet.  In mid-2015 along with my creatinine crossing 5.0 the BUN crossed a 100.  I had no symptoms of it.  In the early August tests the BUN was 134 and simultaneously I had the symptoms of 'restless legs' (RLS).  This was the weirdest feeling I've ever had.  And it affects you most when you are ready to sleep at night.  Your legs start to shiver uncontrollably.  If you try to hold it down, your entire body would pulsate.  Effectively, the RLS did not allow me to sleep a wink for 8 nights.  Driving to work was becoming difficult.  Working a full day was requiring multiple cups of coffee to stay awake.  The RLS got worse to the level that my legs would vibrate even while sitting.  I informed Dr. RR and he recommended I start on Requip. He also told me that there was no guarantee it would be effective and that I should consider dialysis.  The RLS was due to the toxicity in the body and will need to be removed.

Since the dreaded 'D' word was spoken and I knew it would be life-changing for me I started to consider what I could do diet-wise to lower the BUN.  I began with the simplest thing I could do right way.  Stop eating chicken.  I would eat chicken in the form of sandwiches or wraps whenever I could.  Chicken was my main form of protein now that beans and lentils were out due to the K or the P controls.  Cutting out chicken made the difference in the BUN which dropped to 78 and after 3 weeks of talking the Reuip I stopped taking it and the RLS also went away.   Good riddance.  Because, the Requip would get the night's sleep I needed but also made me a zombie during the day!!  Also, 1 les meds for the day was better.

Cutting chicken meant that I had to supplement my protein some other way.  I resorted to having egg-whites (egg yellow has the P, avoidable).  However, over a period of two months I started to feel weaker due to the reduced protein in my diet.  I continued to have whey protein and egg-white which would still ad up to only a third of the daily value.  This along with the reducing Hb was making me weak and tired.  It was noticeable.

The good news was that my brother, Rajesh, had already getting himself tested at RUSH as a potential kidney donor and his HLA tests were already known to be a good match.  This was around the time when the dreaded 'D' words were first spoken by Dr. RR. But there were many more tests to be done before he is officially approved.  Since he was in San Jose, CA, Rajesh's blood tests were done there and results were sent in to RUSH.  It was a slow process and he was following it up efficiently.  Meanwhile, Dr. RR felt that since dialysis was imminent and this would mean frequent follow-up with the nephrologists he wanted me to see another nephrologist closer to home.  Dr. Dodhia was Dr. RR's student at RUSH and was referred and in-network with my insurance.  Dr. Dodhia gave me some sights into the types of dialysis.  There were two main types based on where the dialysis could happen- in-center (hemo-dialysis) or at home (peritoneal).  He also put the fear of kidney disease as to what could happen if I delayed the dialysis- endocarditis (infections in the heart muscle), or neurologic symptoms.  I tried telling him that other than the recent RLS and some breathlessness I had not bothersome symptoms.  I felt he was a panic-monger but then I was biased.  He was simply recommending based on his experiences with CKD patients.

Dr. Dodhia asked me to consult with a surgeon to get a PD catheter implanted.  I kept that appointment and told the surgeon that I had tickets to go to India for a month and the surgery would come in the way. She was ok with scheduling the surgery at short notice if I needed it.  I would keep her informed.  One of the questions in relation to CKD she asked was 'are you making urine'.  I was.  One of her concerns was with my bleeding tendencies due to hemophilia.  I realized- perhaps she has not done surgeries on hemophiliacs.  The next time I met Dr. D he wanted to, again, have the PD put in this time by a surgeon at RUSH.  I pushed back again saying that I was feeling better with no RLS, and my BUN and creatinine was better (the 'no chicken' changes).  Meanwhile, Rajesh was to visit RUSH for a personal meet with the transplant team and get more tests completed.  Things were looking good and I knew I just had to hang in there with my diet and my routine tests.  You can follow Rajesh's experience as a he went through his workup at RUSH in his blog.

My Kidney Disease:RUSH Transplant Listing

Creatinine on the rise

Even though my b.p. was under control my creatinine continued to rise.  I was trying to figure out what I was doing wrong or what I could do to control the creatinine.  I knew that the b.p. could no longer be the cause and turned to look at my diet. I started getting blood drawn on a regular basis- once every 1.5 months.  The prescription was for CBC (complete blood count) and CMP (complete metabolic panel).  With every blood draw my creatinine would rise by 0.1 or 0.2.  By mid-May 2012 my creatinine level was close to 4.0.  Dr. RR told me that if this trend continued and the levels crossed 6.0 I would need dialysis.  I was not prepared for this. He also advised me to get listed for a kidney transplant at a center.I had a few choices to go to in Chicago for a transplant and I chose RUSH.



Listing at RUSH, Chicago
Getting listed a Kidney Transplant Center (KTC) is a necessary first step towards finding a donor kidney.  The process is lengthy with multiple and long appointments and a series of tests.  KTCs are normally at University Hospitals.  The KTC's financial coordinator contacted my insurance to get the visits and tests approved before scheduling.  In turn the insurance appoints a case manager who worked with me through the entire process until transplant.  May case manager is Caryl Taylor.  Earlier, I had written a post on the process of my getting listed at RUSH.  One of the key learnings at the KTC was from my meeting with the dietician.  I was asked to keep my daily protein intake to 25 gm.  I also got a list of high, and Ok potassium (K) in foods.  They also told me that I would need all tests redone once a year to stay on the transplant list.  In addition, I had to get blood drawn, monthly, and mailed for cross-matching with available donors.  This was sent via USPS to a 'Gift of Hope' center.

My Kidney Disease: second opinion on b.p.

Second Opinion on b.p. meds

While the b.p. was once again uncontrolled, the creatinine levels started to creep up.  In May 2009 it was 1.9 and by Jun 2011 it was 2.9.  This rise was alarming enough that I sought a second opinion.  I reached out to Dr. Azmi Kabbani, a nephrologist in Atlanta over the phone and explained my situation with the b.p, creatinine and hemophilia.  He recommended a new drug- Hydralazine. This drug is the category of vasodilators.  Dr. RR prescribed it. This is normally prescribed to be taken 3 times a day.  I started on it and the effect on my b.p. was almost immediate.  Since I was already taking Enalapril-HcTz and Amlodipine once a day I decided to reduce my Hydralazine use to one a day.  I have stayed on this 3 tablet regimen to control my b.p. to date (2015).

The only diet restriction I was following at this point (2011) was to reduce my salt intake.  Excessive sodium from table salt was known to cause an increase in b.p.

My Kidney Disease:progression

The Progression

The earliest record of the progress in my CKD was the doctors noticed in 2002 that my creatinine levels had risen and was 1.3 (normal < 1.0).  This was during the investigation to have a large blood clot removed from my hip.  One thought is that the large clot, also known as a pseudotomor, which was the size of a football in 2003, could have put pressure on the kidney and exacerbated the CDK.  Nobody knows.  The doctors were hesitant to do a kidney biopsy for fear of causing an internal bleed.  I saw a nephologist, Dr. Roger Rodby (RR), at RUSH, Chicago for the first time in 2005.  He was referred to me by my hematologist then, Dr. Valentino.  Dr. RR continued my traetment to maintain my blood pressure with Enalapril.  He believed that Enalapril was kidney-protective.  Also, to help my kidney he also added hydroclorothiazide and started me on a low dose combo pill- Enalapril-HcTz (HcTz is a diuretic).  His hypothesis on the CKD was that either it was caused by prolonged untreated hypertension of due to the hepatitis B exposure.  I was exposed to Hep B due to blood transfusions to treat the hemophilia in India.  I also saw a hepatologist, Dr. Shah, at RUSH who investigations (2011) ruled out Hep B as a cause for the CKD,  Meanwhile, my blood pressure, did not remain under control and first Dr. RR tried increasing the Enalapril-HcTz.  To this he added a new medicine- Toprol, a beta blocker. This worked, however, it made me very drowsy during the day while at work,  Toprol also caused my pulse to drop significantly to 50s. After a month (2011)with this side effect Toprol was dropped and Amlodipine was added.  Amplodipine is  calcium-channel blocker.   This again was not effective beyond a year and the hunt was on to find a drug combination that work on my b.p.

My Kidney Disease:Beginnings

The Beginnings

The origins- when and the how of it- is not clear to me.  I do not remember. I am 55 years old and also have hemophilia.  However, having hemophilia is not known to predispose to Chronic Kidney Disease (CKD). CKD is occurs normally as a result of diabetes or high blood pressure b.p.) with excessive use of pain-killers (narcotic) being another possibility.  I do not have diabetes (no family history either).  However, I believe, the other two factors ( b.p., pain-killers) may be the contributing factor.

The earliest signs of kidney disease, I recall, is from my late teenage years, in India.  The first signs were the froth in urine.  My hemophilia was such an overwhelming issue with the lack of any treatment into my 20s that high b.p. was ignored and never treated.  In addition, I have been taking miscellaneous pain-killers available to me to control the pain from bleeds in the joints.  A significant contributor, I feel, was when I was taking one or more capsules of the drug (Proxyvon), which I consumed daily for several months after my hip bleed which caused significant nerve damage.  I am never sure that Proxyvon was the main reason for CKD, but that's certainly my most used and effective pain relief.  For the sake of closure - Proxyvon is banned in the US and recently also in India.

My CKD was first diagnosed, formally, when I came to the US, in the early 1990s, and I saw Dr. James Brandes, who was nephrologist at the Medical College of Wisconsin, Milwaukee.  Along with early stages of CKD he started treating me for the high b.p. with a low dose of Enalapril.  Enalapril, an ACE inhibitor, was effective.  His main advice to treat CKD was to reduce my fluid intake (mainly drink less water).  His rationale was that the kidney works like a pump and "you should tax your pump a little less".  I complied with this rule for over 10 years.  My CKD remained stable with a serum creatinine value a little over 1.0.  The frothy urine was my main symptom of CKD until my early 40s and controlling my b.p. was the only treatment.