Living with Renal Replacement Therapy

My Experience with Kidney Transplant - 9 Great Learnings

We were in sunny Singapore in sultry September of 2007, wading our feet in the Indian Ocean watching large oil tankers cutting waters ever so sharply, our daughter little Hope, my wife Vera splashing sea water on each other. I was a few steps behind these exquisite ladies, appreciatively watching the love affair between the two. It was a moment about to be captured in my memories forever. I looked for our camera, but it was left in our resort room. I left it to my cerebral memory! It was on day 3 that I noticed difficulty to fall asleep on bed in lying position. The upper half had to be propped up on a pile of pillows. Next morning my feet were so swollen, I had a little limp in my walk. I tried to hide it, so as not to alarm Vera. The next couple of days were not so pleasant with the feet skin having stretched into a round balloon around the ankle. I was relieved with the arrival of the day when we were to catch flight back to our home in Mumbai/Bombay.

The next day, I was hospitalised at Breach Candy, Mumbai. Doctors suspected heart problems. They said I was full of water up to my waist and that it could have been serious if water level in my body had gone up further to drown the lungs and ultimately the heart. The treatment was to remove water through diuretics and I urinated a lot for next five days. As it turned out the kidneys were the real culprit as they were not adequately removing water from my body. My kidneys were rapidly deteriorating in their performance. I was put on limited water intake and low protein diet. I was then sent home to fend for myself. The good news was my heart was in good shape! My condition is medically called polycystic kidneys, a supposedly genetic disorder.

The truth dawned on me although slowly. With kidneys failing, I was confronted with the most common of what is next dialysis. I began to visit dialysis centres and talk to patients hooked on to their blood cleaning machines. They did not look like people on their death beds. They were all bearing their condition bravely and facing the reality. I realised I was facing my first moment of truth.

Dialysis requires a shunt to be permanently attached to an arm to combine the artery and vein to the dialysis machine. I found that I would be connected for three hours to the machine four days a week. I started to read more about kidneys and how they work to keep one alive. Dialysis is not a full replacement of all function of kidneys. At best it does the cleaning of the blood. It does not balance the fluid level nor balance the blood chemistry nor the improve production of vital chemicals.

I began to talk to couple of more doctors - the ones who are kidney specialist are called Nephrologists. They said two things in common and those are that my kidneys have a life of six to twelve months and that transplant is the most preferred option. I read more on the net. I met people who had undergone transplant. I met donors. I met happy people.

I decided to write to members of my family and to let them know my malady. I got positive response from so many willing to donate that it simply swept me off my feet. I felt being loved, a feeling which I cannot describe in words. All of my three sisters had agreed to donate. The magnanimity of their willingness struck me. This was my second moment of truth.

I decided to drop dialysis as an option and focussed only on transplant. I changed my Nephrologist to one who was willing to involve me as a patient, who wishes to fully understand the emotional, physical and medical procedures and processes. I did what the medical fraternity say “doctor shopping.” I continued to do so till I found one who best met my needs and not necessarily the most famous or the most expensive! I think this is perhaps the most important step I took. The doctor must partner with you to get to the best solution.

So my Learning #1- Be most careful to select your Nephrologist as he is going to be your partner for a long, long time.

My choice of the Doctor concurred that if everything goes well; a kidney transplant is the best way forward. He explained why there has been so few number of transplants done in India. It is not lack of medical or surgical skills or lack of hospital facilities either. The laws framed by the Government are such that do not encourage transplant. This is how he explained rather sadly. The Indian laws do not accept a donor who is not a close family member such as brother, sister, parent or spouse. It struck me hard how lucky I was. We started the various laboratory tests and medical check on selection of donor.

Daily I would devote time for internet research. I learnt about kidney rejection, how our body considers new kidney as a foreign intruder, how the whole science of organ transplant is fast developing with better immune suppressant, and the criticality of the post transplant medical attention.

Learning #2 - surgery on donor is done through laparoscopy method.This technique greatly reduces the recovery period of the donor. The older method is making a cut of 8″ at the hip area for easy access to the kidney. This method, although makes kidney removal more easy, is very painful and recovery is a lot longer.

My son Zubin living in Boston had began his own investigation. He found that Boston is the most desired medical centre for organ transplant because the world’s first kidney transplant was done in Brigham Hospital in Boston and that the hospital has a separate team working exclusively on transplant. That Brigham does over 100 transplants a year. Zubin was determined to convince me to get it done in Boston.

Learning #3 -The handling of the kidney on removal and before transfer to the recipient are crucial skills developed over time and experiences, which only comes from number of transplants done by the surgeon

Zubin developed good rapport with transplant team and obtained Brigham methodology to evaluate and select a donor. I followed the same evaluation methodology on my prospective donors in India, which by the way is a minimum of three month process.

As one doctor so brilliantly said “kidney problem is like treating one with high blood pressure without having a blood pressure measuring instrument.”

I made my first visit to Brigham Hospital in November to meet the Doctors. I met one surgeon and one Nephrologist. Both turned out to be of Indian origin, including the Director of Transplant Department. It was a nice, warm feeling mixed with pride.

Learning #4 -Post transplant monitoring to prevent rejection requires skills that would come with Nephrologists with more years of experience and involved in active research.

Now the selection of the donor began in all earnestness. My middle sister turned out to be 100% match in cross match. The younger and the older came equally at 50% match. The full body health check indicated that the youngest of the three sister (although older to me by six years) would be the best choice. She was best in health. The whole process although very lengthy, went fairly smoothly over three months period.

Learning #5- it is preferable to have separate Nephrologist for the donor and the one treating recipient. This makes the donor more comfortable as he or she can interact with the doctor with complete openness.

The donor of choice was approved by Brigham Hospital when the last test was completed. This meant that sister and I can reach Boston just four days before the surgery. This way we reduced the overall cost as well.

Learning #6 - the donor and the family must be fully and completely involved. It is best to share with them the knowledge that the recipient may have gained from his/her own reading or from doctors. I shared all the articles I could download from the net. Knowledge eliminates imaginary fears and brings these fears into an open forum for discussions with the doctor. The donor and family members should ideally become completely comfortable and every member of family must be supportive of the donor’s decision. The act of donating ones kidney is the ultimate expression of love towards the recipient.

Time is so important in this process. Haste and hurry will create more fears. Let the donor family settle down with comfort on the whole process. The three month period of donor evaluation was most helpful from the stand point of getting answers to all the questions answered and making certain that the donor became emotionally a most willing and happy donor. Any rush towards surgery would not be a sensible thing to do even though the recipient may be on extended dialysis and wishes to bring an end to his misery.

We asked the Hospital for a date in February and were given 28th in the morning. It is always nice to be the first in the day if there are more operations on same day.

So, now we are in Boston in the thick of its winter with night temperatures around 1 to 0 degrees C and during the day 9-10 degrees C.

We presented ourselves at the Admittance at 5.30 a.m. on 28th. The procedure took 45 minutes and my sister, Nargis was called to be taken into pre-operative area by a nurse. Two anaesthetists came and spoke to her and wheeled her into the operating room at 8 a.m.

It was my turn next. I was wheeled into the operation room at 10 a.m. when the procedure on Nargis was nearly completed and the kidney was ready to be transferred. The two operating rooms had a connecting door.

The surgeon attending on the donor hands over the removed kidney to my surgeon who washes the kidney and trims off the fat which generally gets built around the kidney over time. The kidney is ready to be transplanted into me. An incision of about 7 inches is made vertically, in a slight hockey stick shape towards the right of belly button

The surgery was finished by 2 p.m. and I was wheeled to the post-operative area and kept under observation till evening. I was so relieved to see the smiling faces of my family members.

Donor’s room is always in a different section although on the same floor to the recipient, to avoid emotional stress if recipient needs emergency care or complications arise.

My first night was comfortable although the nurse was attending to me every hour. One gets into sleep in and out as nurse takes your vital signs and draws blood for lab checks. Nursing care was impeccable. My family was allowed to be with me any time of the day. In fact visitors were encouraged. This was great.

Learning #7- Do not underestimate the importance of team work between surgeons, nephrologists, nursing and resident/fellow doctors, as each case is unique and collective wisdom matters. Chose your hospital most carefully.

I was made to walk the next day. Regular diet was also started. I was discharged in five days. It was great to be out of the hospital so quickly. Sister was discharged in 3 days.

Learning #8- the doctors looks at the trend of few important blood and urine details such as creatinine, WBC and so on. It would be useful for one to keep record of these details in a spread sheet format.

At home, I was made to measure each day blood pressure, weight, sugar level, temperature and fluid intake and outflow. This chart was taken and showed to the Nephro on each hospital visit. This went on for the first 2 months.

Learning #9- take utmost care and ensure proper discipline. For example, if you missed any dose of medicine, be most honest and immediately tell the doc.

I continued to stay in Boston till full 3 months since surgery which completes the first milestone of my recovery. The second milestone is end of six months from surgery and the third is 12 months. I returned to Mumbai, my home.

Life’s another fantastic journey of a different kind.

I would be most happy to receive any comments or questions.

Cyrus B.