I had Kidney Failure, this is my story

 

I am fortunate enough to be a member of the kidney transplant club. This process isn’t as simple as getting sliced open, sewn up, and you’re good to go. No such luck. Thanks to modern medicine I was able to get off of dialysis. Also of course, thanks to my awesome wife who donated the organ.

How did i get here?

I inherited a kidney disease from my mother. The doctor assured me that it wasn’t a problem as long as I take care of myself. However, being young and irresponsible, I wasn’t exactly cautious about my health. In my 20’s I unknowingly developed gout. I saw a doctor but the gout was misdiagnosed as tendinitis, so I was unable to treat it properly. High blood pressure problems plagued me as well, but I mostly shrugged them off.

The day my kidneys shut down

Being the fun loving youth that I was, I had decided to attend a party. While at my friend’s house I started to feel unwell, my chest was pounding and I felt pretty weak. I thought maybe I’d had one too many. The next day breathing was a bit difficult and weakness persisted. This went on with increasing intensity until Wednesday of that week, about three days. I’d had very little food, couldn’t breathe, and was beginning to black out. I was taken to the hospital and told that I looked a bit pale. Once my blood pressure was checked however, it was determined that I was in stroke territory.

Hospital

Once I was wheeled into the ER, I was told that my kidneys had failed, and my blood pressure was dangerously high. Apparently my kidneys had been failing all week and they decided to crash that day. It took about 20 hours to get my blood pressure under control, and I was notified that I needed to go on dialysis. I was also told to quit smoking that day or I wouldn’t live much longer at all.

My whole life changed that day. My nutrition was strictly monitored. I was put on a renal diet, which is basically eating with salt, potassium, calcium, and phosphorous restrictions and taking some 40 pills a day to manage my blood pressure and electrolytes, among other things. I am fortunate to have had an amazing medical staff. Without them, I shudder to imagine how things could have turned out.

What is Dialysis?

Dialysis is the clinical purification of blood by filtration, as a substitute for the normal function of the kidney. It means that a machine helps to filter your body’s waste products. There are two methods. Peritoneal, which involves filtration through the peritoneum in the abdomen. Or Hemodialysis, filtration of blood through a large machine. It sucks but it keeps you among the living.

Me and my Dialysis machine become bros

I had the option of picking what kind of dialysis I wanted. I chose Peritoneal Dialysis, a procedure in which a tube is placed in my peritoneal cavity to carry fluids to and from my body. The surgery was about an hour. My particular treatment restricted my fluids, allowing me only 1 liter of liquid per day. My treatment lasted for about 9 hours a night, everyday. It takes about an entire wall’s worth of supplies, around 30 boxes of fluid that weigh 25 lbs each, and two boxes of regular supplies. My machine, referred to as a cycler, hums like a loud AC all night. Some funny smelling liquid goes inside of me, dwells within for a while and comes back out looking like pee. Dialysis alone isn’t enough to protect the kidney, nutrition is still a huge factor in my well being. The treatment itself was difficult for me. My chest felt too full and acid reflux was a murderous, hateful thing to go through. Sleep was next to impossible due to feeling so full. Trying to keep my catheter from tangling was also a hassle. So my wife and I decided to explore other options.

The search for a transplant donor

The process leading up to being listed for transplant can be complicated. First, you have to be healthy enough for the surgery itself. This means arriving at the target Body Mass Index (BMI) of 18–22. As well as having your blood pressure under control. Second, you must not smoke tobacco, or take illegal drugs, do so and you will be taken off the transplant list. Third, you must have below 20% remaining kidney function and be displaying symptoms of toxicity. The final and, in my opinion, most frustrating step, is a financial and mental evaluation. The financial evaluation determines if you can afford medication. If you cannot take care of a precious organ, you will not be placed on the list. The mental evaluation is to make sure you are of stable mind and mood and are willing to continue living.

These steps, once met, only get you listed. The wait for a donor, depending on where you get listed, can be anywhere from 4 to 8 years. I chose University of California Davis. Although it’s not uncommon to wait much longer than that. To determine a donor’s compatibility for a transplantation, a simple blood and urine test is administered. Luckily for me, my wife was compatible, and we were able to schedule our surgery in about three months. The donor is under the same perquisites as the recipient, and has to be healthy enough to donate as well. Donating a kidney does not diminish or harm the donor in any way. A fact I was quite thankful to find out, because I was afraid of risking my wife’s health.

There is also something called the Final Directive. There is a meeting that my wife and I had to have with a counselor in which we discussed my wishes for worst case scenarios. The risks for surgery were discussed at length. I also had to designate a caretaker for both of us. All of this goes into a document that the hospital was required to have a copy of on file.

Transplant

Any major surgery carries risk, and this is no exception. The procedure for the donor is about 4 hours long and is done about an hour before the recipient goes under. The recipient’s procedure is 3–5 hours, and the new kidney goes in the pelvis. A strange place, but it’s easier and safer than replacing the old kidneys.

A common misconception is that transplant is a cure. This is not so. Transplant is another type of treatment, albeit the most preferable, since it comes with the highest quality of life. Also, transplant is not permanent. There is the risk of rejection, infection, and medication conflicts. The first three months after transplant are just as challenging as some of my hardest days on dialysis.

For the first three months I had to be in a nearly sterile environment. I had to wear a face mask for 24 hours everyday and eliminated outside contact. I could not be around anyone who was sick because I would catch whatever they had, and risk damaging the new kidney. Raw meats and unwashed veggies are out, so no more delicious rare steak, no more sushi. Unwashed foods can carry bacteria that could make me sick. The medication side effects are also strongest in this time, and trust me when I say that transplant meds are some intense stuff. Hallucinations, tremors, fevers, flushing and my stomach was upset for most of the first 60 days. Also, recovering from major surgery to the abdomen is hell. Can’t cough, laugh, or turn, and sneezing is a nightmare. I never knew how important abdominal muscles were until this experience. Needless to say I will never make fun of anyone with a hernia again.

We even had to make a rotating schedule between my family and closest friends, my wife and I needed round the clock care during our recovery. My weekly appointments also became a three hour quest because I could not drive myself. Some poor soul had to do it for me. I am eternally grateful for the help, but I’m glad it’s over.

How I feel today

After 4–5 months, I was able to move my midsection. I acclimated to the medications, and my energy level rose. My appetite returned, and I started to feel like a human being again. Recovery time for my wife was a whopping 40 days. She was back to work and lecturing me about my food in no time. After I was sufficiently healthy to be on my own, I began to volunteer at my local Kaiser Permanente as a guest speaker on dialysis. I shared my experiences with the patients. I also answered any questions for people who were considering their dialysis options.

My disease problems are far from solved. I will always have to be prepared to be back on dialysis and I’ll definitely never be a cage fighter. There are many things I can no longer do, namely sports. But thankfully, this has bought me at least 10 years of time to eat some normal food, travel with my wife and dear friends, and accomplish as many goals as I want. It’s not a cure, but it damn sure beats not having any choices at all.