What Could Be Next?

In 2009, I had finally graduated college, but what was I to do. I had lost a large portion of my vision, could not drive, and I was still going to UNC quite often. Who would hire someone who could not see plus would need to take a day off every week for appointments? I knew at that time finding a job would need to be put on hold for the time being.

Since 2003 lots of strong medications had circulated throughout my body including chemotherapy and radiation. It had taken a toll on my kidneys, and doctors were keeping a close eye on my lab work. I couldn’t tell any difference in the way I felt, but the damage was happening quietly inside my body. To help with the problem, my kidneys needed to be well hydrated. It was so hard to drink the amount of fluids the doctor recommended to stabilize their function. If I drank too much while eating, I couldn’t eat much. If I tried to drink a lot any other time, I would get nauseated. If I threw it all up, that was a waste of everything I had just tried to drink.

Sometime, I think, in 2010 my kidney doctor felt like he needed to take a closer look. Like I have said before, if anything was going awry, a biopsy was ordered. So, what did he want to do? You guessed it, a kidney biopsy. The night before the biopsy, I couldn’t eat anything after midnight. The procedure was scheduled first thing that morning. My mom and I woke bright and early to get on the road and head to Chapel Hill, hopefully making it through Raleigh before all of the work traffic. We made it there safely, got checked in, and got settled in my pre-op room.  I undressed and put on the trendy hospital gown that wraps around me twice, and anxiously waited for the doctor.

Some time had passed when the doctor entered my room. The look on his face was not very encouraging. He sat down beside me stating he had some bad news. This doctor was my regular Kidney doctor. He was not someone who only did the biopsy. He knew me and is still my doctor today. My doctor proceeded to tell me he was unable to do the biopsy on that day. I did not know what was happening. He continued to tell me in a gentle manner that the cortex of my kidney was to thin, and doing a kidney biopsy was more of a risk than he was willing to take.

To do a kidney biopsy, ultrasound is used to guide the doctor to the best location of the kidney to insert the biopsy needle. He had reviewed my ultrasound and noticed the area he would need to enter had thinned out significantly. It was too dangerous. Doctor H then uttered the last words I was expecting to hear that day – “your kidneys are failing and you are going to need a kidney transplant”. Stunned, I ask, “are you sure”? “Is there anything else that can be done?” He proceeded to explain to me a kidney transplant was not in my near future, but eventually I would need one.

Hearing that news was hard. I had not cried when a doctor had given me bad news previously, not even the day I was diagnosed with Leukemia, but I did that morning. I was finally getting well, hopefully starting to live a normal life, and now something else is happening. At that point, all I could do was get dressed, listen to the doctor, and move forward.

Because my kidneys required more fluids to function the best they could, my doctor ordered one liter of fluids every day intravenously. Thankfully I was able to do this at home. At that time, I think I had had my central line removed from my chest for a few months, and a new one had to be placed to receive the fluids. I had what was called a Hickman. It is a catheter placed in the chest. The line then goes into a large vein. The insertion point of the Hickman was not supposed to get wet although I did in the shower. The dressing had to be changed three days a week. This is the same type of line I had placed the day I was admitted into UNC back in 2003. They were able to remove it for a short period after my second bone marrow transplant until I needed another one with the kidney failure.

The fluids I needed to give myself were daily. I usually hooked up to them as soon as I woke up, and had it finished by lunch. UNC would deliver the fluids and supplies every Friday. I had a pump that was small and fit into a backpack type bag. It was portable but I felt like I had to sit in one place while it was pumping. It took 3 hours every day to get the entire bag of fluids. The daily fluids were ordered to be given for as long as they could delay a kidney transplant.

For years I woke up every morning and hooked myself up to a 3 hour IV. Yes, it was aggravating and the line hanging out of my chest was the worst, but it was just another thing, another bump in the road. If I wanted to go somewhere, I would just pick it up and take it with me.

Doctors tell patients every day, don’t eat sugar, don’t smoke, drink, or over eat. If you are unable to see the silent damage these things are causing in your body, you have the tendency to keep consuming them. If we cannot see the damage or feel the damage, we seem to think everything is okay. That is not always the case. The doctor told me to drink plenty of water and I could not do it. I could not stop the damage by drinking more but I might could have prolonged it. Protect your body, liver, kidneys, and lungs. Take care of yourself. I did not have control over my health issues, but some people do. You will wish you had done more after your damage is irreversible. Have Faith. Stay strong. Be at peace.