A major illness like kidney failure can not only affect the patient but the whole family, it can drain you out emotionally and financially. I've heard of many cases where the husband/wife would leave their partner, family members not coming forward to donate their organ etc. It can be a testing time for the whole family. It sure was for my family - we are all so closed up emotionally and that showed on me as well. I didn't show anyone I was weak and scared - only my husband was prone to that side of mine!
Apart from these challenges, life does a 360 to the one undergoing the transplant. From the time I knew about my kidney failure, to dialysis, to the multiple traumas I had to face to get to the right doctor and hospitals, to major lifestyle changes - everything takes a toll on you. Please be aware of this and be prepared.
My husband and I shifted into my mom’s house, that way she could keep a closer eye on my health and diet; and thankfully husband’s work was closer too. My aunt and cousin also moved in to help out. It was a major reshuffle for many of my relatives.
Our little boxer -Roxie, too knew something was up. we decided to send her away to my uncles place for 3 months till things got better.
By April, everyone was geared up to leave for the hospital any day for the transplant. My brother and I had to get a nod from every department - we had to get a clearance from a psychiatrist, a heart specialist etc and finally the hospital too had to finished their round of interviewing my dad, mom, brother and me as protocol. After all this was cleared they said it could happen any day.
I took my preparation to the next level by cutting off my hair and making it super short – I didn’t want my long hair to be a source of stress when I have tubes coming out from every side. I recommend this 100%!
On D-day, the hospital got me admitted one day earlier so I could finish my last dialysis and get straight into my room – we asked for a twin sharing room so my brother and I could share. My brother was admitted the same day but a little later – he wanted to have a beer and then get admitted. With the permission from the doctors, he had a beer like a boss and entered the hospital like a hero.
We both shared awkward silences during very uncomfortable shaving sessions and anema inserting sessions – complete dead silence.
Moving on! On the day of – we were surrounded by our whole family cheering us on. The nurses came and took my brother first and then about an hour later I was taken. I was feeling positive. I got cheered on by a whole bunch of well wishers from the hospital, families from the dialysis unit and staff too – I felt like I was running a marathon!
With this feeling in I went into the OT where the anesthetic doctor put me on GA and I switched off like a light bulb.
The next thing I knew was I woke up in pain and could hear my brother screaming – I screamed too and asked about my brother a hundred times till they put me out again. The next morning I woke up seeing my doctors angel like face telling me about some report and the urine collection – this was all vague and I couldn’t tell night from day.
Anyone who came to see me had to wear masks so I couldn’t tell who from whom.
I don’t remember by which day I finally felt okay enough to walk to my brother’s bed. We both were kept in the same TICU (transplant ICU) so his bed was 3 beds away. I went walking and teased him that I’m already feeling good and that he too should get up and walk. A couple of hours later I developed cough and cold and that turned into lung infection. My brother although in a lot of pain was sent home by the 4th or 5th day. I was kept for a longer duration because of the infection. The doctors had reluctantly sent me home because my urine output was still not satisfactory. I was home but advised to continue the dialysis. I remember getting back home and getting bouts of fever, everyone was on high alert.
The day I went in for dialysis, I started shivering uncontrollably, the blood reports showed that I had contracted UTI – urinary tract infection – big red alert this time since the transplanted kidney was close to the bladder so things could really go wrong.
I got admitted again and the doctors started with rounds of antibiotics to drive out the infection. I was in constant and continuous pain all along and the antibiotics didn’t subside the pain. Unfortunately there were blood clots too and this was not good in any-way. The doctors finally told me they had to re investigate and that they had to perform another surgery to remove the clots – without a second thought or opinion I agreed and off I went for the surgery.
This time when I woke up, I instantly felt better, I was better prepared to face the battle of the pain.
The pain felt familiar this time and it didn’t scare me.
My urine output was excellent and I felt great. Everything after the second surgery felt good. The fact that I could eat without fear felt so damn good. Even getting back home and eating moms food which I used to crib about, felt like the best food I had ever eaten in my life. Unfortunately this wasn’t the last of my battles. From here adjusting to a new life filled with medicines and lifestyle changes was a battle I had to face every day.
the first year after transplant is when the patient is prone to anything- thus keeping visitors little to none was advised, any communication with anyone should be done keeping a distance, and face masks were worn by everyone!
P.S - I know this blog is long, but I’m writing for that someone, who is looking for an in-depth and detailed look at what happens.
I cannot reiterate this enough - be prepared. This is a big test - so be positive, having the right people who will motivate you, love you and support you are as important as the doctors who are working hard to get you back in shape.
Get help emotionally if you need. There is no shame in asking for help during these trying times.
As a couple, this is one of the biggest challenges we faced. Look at this as a make or break situation. Partners in these situations are the rock. Please step up and show up for your loved one - they need it!
It is going to be a hit financially too, but focus on yourself and get better.
The first year is the hardest, but it will get better, I promise you.
The next blog will be about my life during the first year after transplant – the good, the bad and the ugly.
LOVE LOVE LOVE