Post Transplant- ONE year later

My transplant center completed 50 years of doing transplants.  Donors and recipients gathered and celebrated.

Dr. Fernandez (R, surgeon), Dr. Stahler (L, Fellow)

Tomorrow (December 10th, 2016) marks ONE YEAR after my kidney transplant.  I am doing well and so is my kidney donor and brother, Rajesh.  The difference my new kidney has made is significant.  I want to summarize some highlights of this past year and will post additional details of the same (and more) over the next 3-4 weeks.

The year post-transplant was not easy for the first 2-3 months.  I had a number of re-admissions into the hospital in December and Jan.  This was to identify, diagnose and treat an infection.  Since then, my health has started to improve steadily.  Here are a few numbers used to demonstrate this improvement.  My Creatinine is now 1.12 (was ~6), GFR 70s ( <10), hemoglobin 13.3 (10 with EPO injections), potassium 4.5 ( >5 with treatment).  My energy level is normal.  I do not wake up and feel tired in an hour.  I am not breathless after a 3 min walk. I can have my favorite foods, fruits and nuts- banana, potato, cashew, almonds, peanuts etc. I have travelled, flying and driving, for over 30 days in the past year.

In February 2016, my surgeon, Dr. Fernandez, transferred me to a nephrologist, Dr. Maha Mohamad, for follow-up care.  On a more regular basis I work with my Transplant Coordinator nurse, Melissa Schafer.  Melissa will be point of contact for all transplant needs.

My final clinic meeting with Dr. Fernandez

It is a modified lifestyle post-transplant.  I have be-friended antiseptic wipes, hand sanitizers, sunscreen and masks.  I have them within reach at home and when I travel.  High priority is given to cleanliness and sterility.  For example, I clean my work space once a week with the wipes.  I wear a mask when I enter a plane or a crowded place such as a movie theater. I use hand-sanitizer and wash my

Transplant coordinator, Melissa

hands with soap a lot each day.  My transplant
medication is monitored and adjusted by the Transplant coordinator.  I have 3 anti- rejection tablets.  The dosage of each has reduced over time based on my lab test results.  Some new medicines are added to maintain the Calcium and Vitamin D levels.  I avoid being in the sun and alo use sunscreen (SPF 50 or higher). Each time any medication dose has been lowered/changed labs become more frequent.  So a monthly lab becomes weekly. The Tacrolimus level is closely monitored and maintained between a certain range based on how far out I am post-transplant. I still continue to record my vitals (BP, weight and temp) daily.

One important thing to remember is that I will never be kidney disease free even post-transplant.  So I went from CKD Stage V to Stage II. This is easy to understand as the new kidney is always an attack target for my immunity. Once again, CKD Stage II is all it takes for me to feel normal and its upto me to prevent a decline now by taking my meds as prescribed and some additional precautions.  In my case the main concern during CKD days was BP control.  Hence I still watch the sodium/salt in my foods.  For folks you have been diabetic, yours would be the sugars.  This does not mean I am paranoid about my diet.  I do go out to eat.  I do stay away from fast foods, especially the ones that use fresh vegetables or processed meats.  For example, I avoid Subway, McDonalds etc.  I also avoid salads not made at home such as salads at a buffet.  After over a decade of having low-salt foods I have lost the taste for it and have difficulty enjoying a slice of pizza or chinese foods loaded with soy sauce!

One other thing to be taken seriously is protection from the sun.  The Tacrolimus makes you more susceptible to skin cancer and hence the regular use of sunscreen (SPF 50 or higher).  I try to wear long sleeved shirts, long pants and a cap.  I addition make sure I apply sunscreen even on the back of my neck and behind my ears.  The simple rule is any body area exposed should be protected from the sun.  On the flip side I do not get much Vitamin D anymore.  I take Vit D tablets along with Calcium.  These levels are also measured at the labs.  In addition, I take an iron and a vitamin supplement.

Next, a couple of new diagnosis I now treat.  Immediately after my transplant my blood sugars were high.  I have never been a diabetic and so this was new.  I also follow up with a dermatologist annually.  In addition, a bone density scan (DEXA) showed that I have osteoporosis.  Hence, in addition to my kidney, I am also treating the new diagnoses and following up with the doctor.

1 year Transplant Pin received at my annual visit

I had my annual visit with Dr. Mohamad on Dec 6th.  The transplant team is pleased with my lab results.  One of my transplant med's (Mycophenolate) dose has been cut in half and I am back to weekly labs. I have a cough and chest congestion which I am treating with antibiotics for almost 3 weeks now.  X rays are negative. This is my first infection since March.  Immune suppression is for real.  If I get an infection it is going to take longer to cure.

There are three drugs that would drop off over time post-transplant- Nystatin (Thrush, after 1 month), Acyclovir ( CMV, 3 months) and Bactrim ( anti-bacterial, 1 year).  This weekend I will stop the Bactrim.

With Rajesh

A note on how my brother, my kidney donor, is doing.  Rajesh is doing well.  He went back home in Fremont, CA, ten days after the transplant surgery.   He resumed work 2 weeks after his surgery.  He leads a normal life with one kidney.  He also had labs done after 6 months post-donation and the numbers look good.  He recently ran the Sacramento International marathon and feels good about doing this.  He notices very little impact of his kidney donation on his return to normalcy.

I will be giving more details on this past year in future posts.  So stay tuned.  Meanwhile please share this and previous posts with anyone interested in kidney disease and my transplant.

My Kidney disease- Day 2-4 post surgery

Day 2 (Dec 12, 2015)

All days start the same way- an early morning fasting labs, vitals, breakfast and meds before 9 a.m.  On Day 2, the nurse spent some describing the meds in greater detail.  He wrote on the whiteboard.  The categories (meds) once again are: Anti-rejection (Tacrolimus, Mycophenolate, Prednisone), anti-infection (sulfamethoxazole-trimethoprim (anti-bacterial Bactrim), acyclovir (anti-viral) and nystatin (anti-fungal) and other ( entecavir, calcium carbonate-Vit D, pantoprazole, anti-hemophilic Factor, amlodipine, hydralazine).  I was informed that the anti-infection meds would be lifelong and I should not miss taking them. The anti-infection would be 1 year for Bactrim, 3 months for Acyclovir and 1 month for Nystatin (to prevent thrush).  The Tacrolimus would have to be customized to my rate of metabolizing the drug.  This was to be measured every Monday morning via blood draws once I go home.  The ideal 12-h trough level should be between 5-10 mg.  The Prednisone dose would be tapered over the next 4-5 weeks.  The other category meds stay lifelong.

Dr. Paul Stahler, the Fellow transplant surgeon, came by early on his rounds. he inspected the incision and the drain and informed me of the lab results.  He also asked the urinary catheter to be removed.  The nurse removed the catheter that afternoon.  There is an interesting fact I learnt.  The nurse brought in a portable ultrasound machine and measured if I was truly emptying my bladder when I started to pee naturally.  This was done twice on Day 2.  The bladder was empty.  Good news.

The clinical nutritionist came by and suggested that for the first couple of months I increase my protein intake upto 90gms.

The lab results were showing a positive trend on Day 2.  The creatinine was 2.07 (was 6.23 pre-op), BUN 51 ( 123 pre-op) .  Tacrolimus (Tac) was 3 and so the dosage of Tac was increased in the evening.  My weight had dropped to 136.0 lbs (was 140 on Day 1).  I was allowed to start on light renal diet as the potassium was still 5.2.

The nurses hold a class each day around 10:30 a.m. Each day the topics are different.  Day 2 was Home Care. It was mostly about keeping the home environment clean, washing hands etc.

In the afternoon I went down to get the PICC line placed in my right arm.  This was done under local numbing and with Ultrasound imaging guidance.  The PICC line was used for all i.v drips, blood draws and Factor VIII infusions.

PICC Line

Day 3 (Dec 13, 2015)

Dr. Stahler came by in the morning.  The labs continue to promising (creatinine 1.82, BUN 47).  My b.p. was high and so was my heart rate ( > 120).  The nurse told me that the abnormal vitals were due to the meds and they would settle down over the week.  My weight had dropped again, now 130 lbs.  Tacrolimus was 5.

Today's class was conducted by the Pharmacist.  There was a video on the different categories of drugs; the drug interactions; anticipated side effects.  I was told to start using sunscreen  (SPF 50 or higher) and the anti-rejection drugs increase my chances of skin cancer.   I will need to avoid pomegranate and grapefruit.

I took a shower for the first time after the surgery.  The PICC line was wrapped up with GLAD Press 'N Seal and 3M Transpore tape to waterproof the line.  I was advised to let the water flow over the incision and to use liquid soap around the incision.  This was the first time I had a good look at the incision and the tiny staples.  Its about 7 inches long on my left side.

Dr. Fernandez stopped by in the afternoon.  He was happy with the progress I was making and asked I wanted to get discharged that evening.  Since it was getting late and the discharge process was long and then the 3 hour drive home, we decided to take the discharge the next day.  Dr. Fernandez, interestingly, noticed my legs crossed and asked me to uncross them.  "Clots might form which could travel to your lungs".

Day 4 (Dec 14, 2015)

The doctor signed off on my discharge after the labs came in (craetinine 1.62, BUN 42, potassium 4.7).  I was switched to general diet from renal.  Victory No. 1!!  My weight was down again, now at 127.8 lbs.  I had lost 18 lbs in 5 days.

Discharge at UW is a lengthy process.  A number of people have to clear you: the hematologist, the pharmacist, the nurse, the dietitian.   The pharmacy brings up a one month's supply of meds.  I was advised to transfer my prescriptions to my insurance's Home Care Pharmacy.  My conversation with the pharmacist and the nurse was recorded on an iPad to uploaded to a secure site for my review later.

I left the hospital around 3 p.m.  Our good friend, Anil Padmanabhan, drove Sridevi and me home.  Rajesh, his family, and parents stayed back in Madison as Rajesh's follow-up appointment was later that week on Friday.

Going Home!! (with RR, Rajesh, Saniya and Sridevi) 

My Kidney disease- Day 1 post surgery

I am recording what I remember, 2 week later, from the days after surgery.

Day 1 (Dec 11, 2015)

Not sure if I slept well.  I am aware of a few things from the previous evening.  Not much.  Some of the visitors including Rajesh coming over to my room. RR visiting a second time with his sons Amol and Amit. I am not in much pain.  Around 6:30 a.m. the nurse comes by and asks me to get ready to go for a walk. I had some compression socks on and my lower legs/clf was being regularly compressed by a machine at the foot of the hospital.  I had the i.v. line in and also had some pain-killer i.v. drug administered by a clicker under my control.  I clicked on it once and took a slow walk to Rajesh's room guided by the nurse and the nurse assistant on either side.  My wife, Sridevi, had slept uncomfortably in the sofa with a footrest. She came along for the walk.

I had some nausea in the morning for which I got some meds which worked.  Around 9 a.m. the nurse came in with a number of meds, all tablets, for me to take.  The nurse started educating me on the three categories of meds I would be starting on, some for life.  The 3 categories- anti-rejection, anti-infection and others.  He started separating them into three separate paper cups.  It was imperative that I took them without fail.  Still somewhat weak and tired not much registered the first day and I simply accepted what I heard and took the meds in the cups with water over 15-20 mins.  Pre-transplant I was already used to taking a lot of pills and these were even more pills.  All I knew day 1 was a a smaller set of my previous meds would continue (good news) but a whole lot new meds would be added.  I knew that I could handle it.  My blood pressure had improved from overnight low levels 110/81, pulse 88, weight lower at 63.8 Kg (140 lbs), temps 98.1F.  These vitals were measured each morning along with fasting labs around 6 a.m.

I found my blood sugar levels were high, almost at 181 mg/dl and the nurse gave me a shot of insulin.  I was on liquid diet- veggie and chicken broth, super salty, not to my taste.  I wasn't particularly hungry and did not mind no solid foods.  It was liquid diet and ice water all day on Day 1.

The clinical nutritionist visited me.  The main advice I received was to increase my daily protein intake.

In the afternoon took a wheelchair ride to Interventional Radiology.  The radiologist placed the PICC line in my upper right arm using ultrasound (US) imaging.  The entire process took 45 mins and started with doing a US to identify a suitable vein, followed by administration of a local anesthetic to the right arm and then inserting the PICC line under US guidance.

PICC line

The nurse brought me meds around noon, in the evening and at bedtime. My high blood sugar was treated using insulin.  The drain bulb was emptied and measured 3-4 times a day and so was the urine from the catheter collection bag.  I was making a lot of urine.

Our out-of-town visitors Sati, Sayoni (San Jose, CA), Minnie (Austin) and Mana (Kolkata) came by and chatted with me and said goodbye.  They were leaving that evening or early the next day.

(L-R) Deepika, Minnie, Ishita, Sayoni, Mana, Sridevi, Sati

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.