My Journey – How Organ Donation gave back…our Life

My Journey – How Organ Donation gave back…our Life

If every single reader, who rode this journey through this story, goes ahead and gets registered as an Organ donor and let their family knows, that they are organ donors, then imagine how many precious lives can be saved in future. I understand, just registration will not help, but we need to bring a movement to create awareness and establish Volunteer Organization like Gift of Life, which can monitor and maintain the list of recipients and organ donors as it becomes available

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My Journey – How Organ Donation gave back…our Life


Every year when the date Feb 23 hits, I start sinking into the emotional wave of a journey, which we, as a family, undertook and completed 10 years ago.  I want to take you on this emotional ride with me so you can feel and understand why we need to promote Organ Donation and how important it is to have a volunteer organization to coordinate organ donors and recipients. Here is my journey….

The day started with an early morning call at 7.23 am from liver transplant coordinator, “Guess what, we got a Liver for him”.  This is THE call we were waiting for over last 4 months.  She asked me about his feed and said Surgeons are on their way and she is coming with GI doctor to arrange everything.  I called home right away and gave the news.

Once I kept the phone down, activities went up the the room.  A Nurse came in and checked with me that I should not feed him anything.  Dr. Matthews and his Fellow Doctor came to make sure that I got the news.  His nurse took his vital signs.  Then the blood-drawing nurse came in to take some labs. Surgeons came in to measure his liver size and said they were going to get the new Liver.

In between I took him on his regular morning walk out into the corridor.  Soon after, Kate came with full excitement…”looks like Today is YOUR DAY.” We were all happy to see her. She explained the whole procedure and how the rest of the day will look like. GI Doctors also came in to meet us and got the consent signed for his surgery. After a while all of them left to make further arrangements.

Around 10.40 a.m., we went to the Operating room (OR).  Down on the 4th floor in OR, we were waiting for a call from Surgeon to hear that the Liver is good and perfect for him.  We got that call around 1.30 p.m. and he was taken to OR.  Then begins the long waiting game….

Nurses kept us updated about his progress in the Family waiting area.  Dr. Rand came in to talk to us and informed that they had started the incision around 4.00 p.m.  Later on she came in to let us know that his old Liver is out and looks pretty much green and they are replacing that with a new liver.

Around 9.30pm the Surgery was over and the Fellow Surgeon came to greet us and said he did great and everything went well.  He was looking very calm.

Night after the transplant also went well.  They were keeping a check on his labs and Doctors were in touch to get his progress.  His Doctors were a bit concerned about the elevated Liver Enzymes.  Next day morning he had his Ultrasound done and Dr. Rand was there to make sure everything was OK and that there was nothing to worry about.  They were satisfied with the Ultrasound’s result, though AST, ALT were still high.

Couple of days in PICU were monitored and attended by doctors and nurses regularly.  On Feb 26th evening he had a visit from his surgeon and the GI team and everyone was happy and talking about transferring him to regular floor. Knowing he will need extra care and attention from us on regular floor, we decided to go home and get at least one full night sleep.

In the morning of Feb. 27th, we got a call and we rushed to Hospital. His tiny ICU room was like mini OR. His Liver surgeon sat next to me and explained that his kidney stopped working last night and so does his liver. We need to re-list him in the transplant waiting list. Transplant waiting list is maintained by UNOS part of GIFT OF LIFE, which coordinates the matching, or organ donors and recipients.  He will be listed as a highest priority recipient, because he needs a new liver within 24 hours to survive.  Now, that is the moment I described as moment between life and death.

She put her hand on me and asked, “You are there? Right?” I was evaluated to donate part of my liver to my baby, so getting the depth of her question, I said “Yes, Yes!! I am here and ready to go anytime.”

Next few hours, I was standing outside his room, looking through the window and shedding my tears to get it all out and praying with my heart. His body was ballooned with body fluid and doctors couldn’t find vein to put IV, so specialist from Cardiac ICU was called to make cut and find vein. Kidney specialist consulted with us to put him on dialysis. He said “We never put dialysis for a child under one year old. You know his condition, so we can’t promise, but we will try our best”. We signed the waiver and asked him to do his best.

As soon as our family and friends got the news, prayers and love was showered on him from every corner of the world. Our closest cousin and friend joined us right there at Hospital. Doctors were trying to stabilize his condition all day long. In the evening around 5.30 p.m. Kate came in her party dress and gave us the news that they found a match and he will undergo a surgery tonight. I admired the dedication of his transplant team that they were looking out aggressively for his match and avoiding live donor route, as much as possible. Team probably had a Holiday party that evening and I was amazed that even though they were tirelessly serving their patients, they could maintain the peace and sanity of their life as well.

He was once more taken into surgery around 8.00 p.m. and we spent another night in the family waiting area.

Morning of Feb. 28th, Transplant surgeon came and informed that surgery is over, but since his condition was quite delicate, so he is not out of the woods yet and they will take this hour by hour. There was nothing in our hands, so we were just holding onto our faith and prayers.

He was back to ICU and beside all the IVs and tubes, now he had Dialysis machine working next to him with a 24 hour support nurse.  His new Liver was trying to get adjusted with his overall body condition. His Surgeons said, “It can take time to get his Liver working.  Once the Liver will start functioning, his Kidney may start functioning as well”.

As per latest lab, there wasn’t a big change in the result except INR came down a bit. Doctors were continually keeping an eye on him. They are concerned, but satisfied with his overall progress. His result from Ultrasound showed that blood flow to Liver is fine, which was most important in this type of surgery.

He was bleeding overnight so early morning on March 1st his Surgeon took him to OR to release the pressure on his liver.  His surgeon explained to us that they were giving him lots of fluid to keep up his blood pressure and since there was no urine output, so pressure was built up.  They fixed the problem for time being but he needed to be re-listed.  That means, new liver didn’t work.  We were wondering if he should even be re-listed.  Is it really working on him?  She talked us through our concerns and gave us hope with an example of another patient who was 20 yrs. of age and had 5 transplants, when she was a baby.  With that hope we gave her consent to re-list and I looked at her in a hope that I can be a donor now, but she explained that living donor is not an option for him anymore.  All we have to wait for Cadaver Organ Donor. Now this was the moment, when we lost our hope and started talking about his organ donation, whatever we could.

I was numb, completely emotionless and had accepted the fate. My family on other end couldn’t hold their emotions, but we had tremendous support from friend and cousin, who were with us step by step. He was back to ICU and Doctors were watching his progress and we were also taking this, hour by hour.

By late afternoon, Fellow surgeons came to measure his liver, before they were going to harvest an organ. I asked them, “What is the blood group of Donor?”  They said “O” so I said to my husband, should we let that liver go to Nadia (another kid, who was waiting for her life saving organ and her blood group was the biggest hurdle in finding a match). My husband literally yelled at me and shook me out of my sub-conscious (or emotionless state), “if anyone need that liver at this moment is YOUR baby”…and that’s it. I finally broke loose and cried for a while, before I could pick up myself to fight the reality.  This incidence was a pure miracle of God. No one could be this lucky to receive 3 times lifesaving organ while on average there are 21 people dying every day in this country, waiting for transplant.  This time match came for an adult patient in adjacent hospital and Doctor decided to give part of the liver to my baby.  So from one liver 2 lives were saved.  On an average, one Organ Donor can save 13 lives, by donating heart, liver, kidney, pancreas and tissues.

While we were waiting, my friend called me that my elder son is having fever and I should get home. Leaving my husband with his friend and cousin, we all came home.  I was constantly calling to find the progress and by 11.00 p.m. got a news that it is a match and he will undergo surgery at 1.00 a.m.

Everyone was sound sleep at home, but my mind and heart was with my baby. I got up and quietly left the house and drove to hospital under heavy rain. All through the way I kept praying May this rain be a shower of blessings from God.

Early morning on March 2nd, Surgeons came and mentioned that he was in stable condition this time, so all went well, but we will still monitor his progress hour by hour.  We were posting his update through   a common website and as soon as we posted about his 3rd transplant we got the message “Third time is a Charm” and “we can’t go back and start a new beginning, but we can start from here and make a happy ending”. Yeah, that’s exactly what happened. His kidney revived in 10 days and he was out of ICU in a month. Rest is history.

It will be a shame if this emotional journey ends here and we do nothing for many patients like him who are waiting for a lifesaving organ transplant.  If every single reader, who rode this journey through this story, goes ahead and gets registered as an Organ donor and let their family knows, that they are organ donors, then imagine how many precious lives can be saved in future.  I understand, just registration will not help, but we need to bring a movement to create awareness and establish Volunteer Organization like Gift of Life, which can monitor and maintain the list of recipients and organ donors as it becomes available.

Reader Contribution; A parent…who has gone through it all

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