Dialysis and finding the right hospital

DISCLAIMER

This is a long post- I had to go through many experiences to find the right hospital.

I haven’t mentioned any doctors names but I have mentioned the hospitals where I was treated.

This post is based off of my personal experience.


Dialysis was one of the worst things I had to face. Helpless and attached to a machine for 3 hours can make anyone feel like shit. It takes away the pleasure of living, it takes away the freedom to eat, freedom have a decent bath, it makes you check your ego at the door, along with your shoes. But with all this said, I had two different experiences with dialysis itself.

One at St.Johns and the other at Columbia Asia.

Immediately after realizing that I had CKD, I was admitted to St Johns. My father trusted them since his mother was also admitted there for renal failure, but in her 80's. Going in, the hospital itself is like a city within a city; with lengthy corridors and an ocean of people and patients everywhere. The dialysis wards were filthy - we would go in with our own bed sheets, pillows and blankets in the wee hours of the morning (they often gave us the 3 am slot). The catheter for the dialysis was put on my thigh first and then my neck - procedures for both were terrifying and uncomfortable. The procedure rooms were again filthy - I say this over and over because I like things to be tidy and inviting when your going for a procedure, I mean it’s a basic thing no?

Apart from this our doctor wasn't very kind either. I was often intimidated by her, I remember her coming into the dialysis ward shout at patients and give no one time to ask her questions; and I had many questions. We were still new to the dialysis game and didn't know many things and the nurses knew only a limited amount. By this time, it was decided that my brother would be the donor. He said, there was no question, that he didn't have to think twice about donating his kidney.

Yes, he is a rock star.

During this time, the nephro team started getting my brother tested. they ran multiple tests to see if he was fit and able to donate. He at that time was a smoker, but the minute he decided to donate, it was dropped that instant. But they were still not convinced that he was the right choice and they kept pushing us the cadaver way. What was more, the doctor during a visit told me that I would have to prepare myself after the transplant; that I could never leave the house, that all the windows would have to be shut 24/7 because my immunity would be very low, and the medicines that I would be on would result in facial hair growth and tremendous weight gain - I cried. I couldn't believe that my life would be worse after the transplant when it was supposed to be better. I remember telling my brother and husband that I would like to proceed with dialysis for the rest of my life rather than staying cooked up at home.

I couldn't believe my life was over.

Things really stared to get out of hand when I had two horrible experiences. One when they told us to get a fistula done on my right hand. That procedure was a complete fail, it took hours and I got so tired and weak. The same procedure was done a couple of weeks later at another hospital on my left hand. It was done in 45 minutes and I walked out of the OT with a big smile on my face. The second was to get the catheter removed from one side of my neck and put on the other because the veins were giving out. I remember going into that tiny procedure room with the doctor and the nurse, who did not waste anytime to start flirting in Malayalam. I'm a Malayalee too and understood every word. By this time, I knew how the procedure was done. But for some reason, the local anesthesia kept wearing out and I could feel a lot of pain, so I kept telling him the same and he too kept giving more anesthesia, so much so, that I eventually blacked out on the table. I could hear faint calls of my name, I could hear faint clapping to get me up, nothing worked. I also remember my own consciousness trying to get me up when I could have easily slipped away.

I just wanted to go home.

Much later I came to my senses to see my brother and my uncle by my side, making me drink water and rubbing my back, all the while I was throwing up - I had no idea of what happened, till they told me that the doctor put them in charge of reviving me and vanished. The hospital further told my brother to get me admitted for the night so that they could keep an eye on me; furious with their careless behavoiur, we decided to leave and head home. This time, with the help of a family friend, we decided to change hospitals and never come back.

Columbia Asia was a breathe of fresh air.

Although I was nervous going in and seeing everyone dressed formally, they quickly won me over. I remember sitting with my doctor and telling him that I don’t want facial hair and that I don’t want to be holed up after the transplant - he puzzled at my concern, said that if we were talking 30 years back, he would have probably agreed, but in this day and age and with modern science none of that happens. He also went on to introduce me to many of his renal transplant patients who looked like any other normal person. Till that time, I hadn't seen one transplant patient I could talk to, so this was a big deal for me and my family. Things started to change and started to look up. For one, the doctors were the friendliest most patient people we had come across. My family and I asked them a thousand questions and they explained everything in detail. Apart from the doctors, the nurses and the staff too went out of their way to make me and others feel good and comfortable.

Dialysis here felt good, I could eat what I wanted from the canteen during my time so, I used to go all in and have dosa and noodles! I felt great. Even the catheter on my neck was taken care of so with so much care. Coming here, and seeing so many people who have already had transplants, living well and hearty shook me to the core; everyone had an air of positivity around them with big smiles and words of encouragement.

Those words that everyone spoke - be positive, became my mantra.

From the doctors to the nurses to the staff - everyone spoke the same language and it really lifted my spirits. Brother had to redo his tests once again, but this time it was full steam ahead and we were ready.

Excelsior!!


P.S - I know this was a long post, but the right hospital, the right doctors can make such a big difference. I love all my doctors, nurses and staff like my own family and look forward to meeting them every time I visit the hospital. I wish anyone going through this hardship to have this kind of support system, because once this in place, you feel unstoppable.