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.