Kidney Transplant

I was and still am battling kidney disease.  Before dialysis was my only option, I tried everything possible to keep my kidneys viable for as long as possible.  I started exercising more, eating right, and had stopped smoking cigarettes. But, eventually,  I was informed that I had reached stage 5.  My kidney disease had progressed to end stage renal disease (esrd).  This means that my kidneys had stopped working completely and I would now need a machine to keep me alive.  I was also asked if I wanted to get on the transplant list.  I said yes.  

I thought the offer for a new kidney would come to fruition rather quickly.  I had a huge family, surely I could grab a kidney from one of them.  I thought it would be easy.  Besides, you really only needed only 1 healthy kidney to survive.  I was stubborn and did not want to start dialysis.  Even though I was taking insulin, I hated needles, especially the big ones used for dialysis.  I was told that if I refused to go the route of dialysis while waiting for a kidney transplant, I would die in a matter of weeks.  By the way, by eating right and exercising, I was able to stop taking insulin.  (After the kidney transplant, the new medication made my sugar levels unstable and I had to start using insulin again.)   

So, you guessed it.  I started dialysis immediately.  Then, I got on the transplant list at John Hopkins.  I chose John Hopkins Hospital because I believed that they were the best hospital.  And, I was right.  From the doctors, to the nurses, to the coordinators, to the social workers, to the to the people who would take my vitals, to the people who brought me my meals- everything was top notch.  They felt like family.  

Even though I had to start dialysis, I still felt blessed, but angry at the same time.  My anger would soon subside as I came to the realization that I was truly blessed to have a machine that would keep me alive.  But my days on the machine were very rough mentally and physically painful.  Being on dialysis would lead me into a depressive state that I hid from everyone.  I had no one to talk to without feeling like I was burdening them.  I didn't want to add the weight of what I was dealing with mentally to worry them.  So, I just threw myself into my work and became even more of a workaholic.  The stress at work made my high blood pressure even worst..... read my newsletter for further details. 

There are hospitals in different regions in or out of your area that you will have to choose in order to get an offer for a kidney donation.  Even if you have a living donor, you still have to chose a hospital so that they can run test to see if your donor is a viable candidate.  A patient would have to be cancer and infection free for the doctors to attempt a transplant.  If you have any type of infections in your body or if you have cancer, they will inform you of your options.  Doctors required transplant recipients to be vaccinated against COVID before receiving an organ.  It was noted that the vaccine will help boost the immune system's ability to fight off infections.  It is Important to remember- When choosing a hospital to get tested for THE LIST, choose a hospital that is close to where you are living.  If you get THE CALL, you will have to arrive at the hospital in a timely manner.  A kidney will only be viable for a certain amount of time.  

Consequently, I received a call, August 2021, saying that they had a kidney for me.  I was informed that after 6 years, I was finally at the top of the list and was asked if I wanted to accept the offer.  I was totally shocked when the person said I had been on dialysis for 6 years.  I had truly forgotten how long I was on dialysis.  My dialysis years were very difficult and the years just blurred together for me.  The last question I was asked was had I received the COVID vaccine.  I said I received one of the 2 shots.  After you get the first shot, you had to wait 2 weeks before you can get the second one.  The person on the phone put me on hold and conferred with someone.  Next thing I knew, I was told that I had to be completely vaccinated in order to receive the offer.  I was unable to receive the gift that day.  It just wasn't my season.

Getting tested for The List was a pretty long process.  The tests lasted pretty much all day.  Besides all the bloodwork and other tests, I would have to see a mental health doctor.  They had to make sure I was emotionally ready to deal with everything that comes with post transplant life.  One of the topics discussed was how would I feel if I was chosen over someone else to receive the gift.   Would I have thoughts of guilt? The doctors also counseled me on depression- saying that some recipients after the transplant felt unworthy of such a gift.  I said I was fine and that I could handle it and was happy to move forward.  They also wanted to know if I had a support system.  I would need someone to take care of me during my recovery.  

I met with someone that explained my kidney choices.  I had to decide what type of kidney offer I was willing to accept.  After deciding, I signed a form for my choice.  I could have agreed to get offers if a kidney became available from a deceased donor that had AIDS, CANCER, HEPATITIS, or etc.  However, I was informed that you are more apt to get those diseases from that kidney donor if you received their kidney.  I did not sign that form.  I opted to sign the form that said I would only receive offers for healthy kidneys.  My thought process was that dealing with kidney disease was already physically and mentally draining.  If I could help it, I just did not want to deal with any other major health afflictions.

After I initially got test for The List, I waited patiently for The call.  After a couple years went by, I called my transplant coordinator, to inquire if I was close to getting a transplant offer.  I needed to know what was my status on The List.  My coordinator informed me that I was still listed as inactive on the list.  As my disappointment could be heard through the phone, my coordinator said she would start sending me more frequent testing kits to my dialysis center.  If my numbers improved, they would move me to an active status.  Meaning, I would begin to get offers for a kidney.  

I changed my diet by decreasing my calcium, phosphorus, and sodium intake.  I started exercising more and became more strict with my fluid intake by only drinking 32 ounces of fluid a day.  These were the instructions I received when I initially started dialysis.  But, I used to cheat and drink up to 45 ounces of fluid a day.  The more fluid the machine has to take off in one session meant that you would get sick while on the machine.  From personal experience, it is an awful feeling.  I would get nauseous, dizzy, violently throw up, and get overheated as my blood pressure dropped.  The techs would have to stop the machine and put cold packs on me to bring my temperature down.  It was the worst sick feeling ever.  I had to definitely come up with a plan to control my fluid intake.  Some of the things that helped curb my thirst were limiting sodium intake, eating frozen grapes,  watermelon slices, and ice cubes.  But remember, when things melt, they liquifies.  That liquid counts against your fluid intake.  I would leave ice cubes in a cup on the counter to melt.  I had to confirm, once the ice melted, how much fluid it added up to be.  Eventually, I was able to stop using insulin for my diabetes and was also able to cut my dialysis treatment days down (not my doctor's choice).  I started going to dialysis 2 days a week instead of the customary 3 days a week. However, my time on the machine was increased from 3 hours and 45 minutes to 4 hours.  I will cover the details in my newsletter.      

One evening in February 2022, I was home conversing with a friend when my phone ranged.  It was  a transplant coordinator from John Hopkins Hospital saying that they had a healthy kidney for me.  I quickly accepted the gift when asked.  I was so excited and scared at the same time.  I didn't have any money saved and since I was living by myself at the time, I wondered who would take care of me.  I live in Maryland, but my family lives in Louisiana, my birth place.  The coordinator told me to pack my bags and come to the hospital.  The organ I was about to receive was from someone that was on life support.  That person's family decided to donate his/hers organs.  They didn't tell me the identity or gender of the donor.  

After getting off the phone, I promptly called my sister in Louisiana to share the great news.  My sister dropped everything and made arrangements to come to Maryland to take care of me after my surgery.  Next, I had to find a ride to drop me off.  I called my friend/ex boss.  I told her that she could just drop me off at the front door of the hospital and that she didn't have to stay. Well, she ignored me.  She took me to the hospital and waited hours for my surgery to be over with .  She even stayed a couple of extra nights until my sister arrived.  I am so blessed to have her in my life.  I was so happy that she stayed.  I really needed her support when I woke up fully from the surgery.   

Let's backtrack.  Before the successful surgery, this occurred-  Everything was in place.  My ride to the hospital was set and my sister was making plane reservations. Then, I received another call from my coordinator.  She was crying as she explained to me that I would not be getting the kidney. Apparently, there was another patient that needed a kidney and a pancreas. She explained that if a patient needed 2 organs and if that patient can get the organs from the same donor, that patient now becomes the priority for the transplant.  I was very disappointed, but happy at the same time.  I was happy for the other person to get a chance to extend their life expectancy. They would also get a chance to live their best life.  I was sad, because now, I would have to go back to dialysis for who knows how long.  It could be another 1 or 2 years before I get another offer.  Then, I called my sister back to tell her the news.  She told me that she had already booked her flight and that she knows I am about to get a kidney.  I urged her to cancel her flight and get a refund.  She said no, she's coming to visit me and that the organ transplant will still take place.  I hung up with her, texted my friend that my surgery was cancelled, then I went to sleep.  I had to get up in a few hours for dialysis.  Plus, I had already made peace with the events that had just occurred.  I felt blessed to have a sister with so much faith that her energy was injected into me.

A few of hours later, about 4 am, I received a call from my coordinator saying the surgery was back on.  She explained that the doctors tried to transplant the pancreas into the patient first before the kidney.  The patient's body rejected the pancreas.  That meant that the kidney would bounce to me. My coordinator told me to go to dialysis for 2 hours to remove some fluid then come straight to John Hopkins for surgery.