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Bye bye Stent

I’ve had the stent removed which is a tube inserted during the transplant procedure that holds the new kidney and its plumbing in place. It wasn’t a painful procedure but it certainly was an interesting one. Over in minutes, the build up was definitely the worst part – and let’s just say that sometimes it pays to be a girl! Its removal also marks passing another stage of recovery so celebrations all round.

I also had my first exchange transfusion which was also pain less. I felt very tired for two days afterwards and I surrendered by staying in bed for a day or two, but feel fine again now. It takes no longer than five hours to complete and is quite similar to the technique use to take blood from a donor; a cannula inserted into a vein drains into a bag which sits on a weighing scale of the floor. Pretty simple.

This weekend I went to my first art fair. Hackney Wicked is a free art fair in London’s east end, through the streets of Hackney Wick. There was lots going on – crafts stalls, live bands, culinary treats and open studios where artists were exhibiting work. There was plenty of walking so again I left completely shattered but it was good exercise. And I bought my first piece of art! Afterwards I recharged my batteries at a local and well known fish restaurant called The Fish House. I put away a tasty starter of squid followed by battered cod and mushy peas. I was in the east end after all! To the clinic dietician’s joy, I didn’t eat the chips.

Six weeks on

I’ve reached the six-week point since the transplant and things are going smoothly. The figure that is most closely monitored is the creatinine level. They also check patients are drinking enough fluids (around 3 litres daily in hot weather) and that weight is constant and that patients are generally feeling well.  My creatinine has dropped nicely – it rises and falls and I must admit it’s nerve wracking waiting to hear the previous visit’s results.

I’ve still had no trouble with the medications.  Yes they seem aplenty but it’s not a huge deal.  I counted 16 tablets in the morning medication (some dosages mean three tablets of the same medication) and four in the evening. I haven’t missed a dose. After a couple of years with dialysis treatment it’s easy to remember to take a few tablets morning and night. Regarding problems I would say however that Boots Pharmacy are absolutely useless at getting prescriptions right.  If you are collecting important medications, i.e anything more serious than vitamin c or St Johns Wort and a hot water bottle!  Get yourself to a regular high street chemist. Just not Boots.

In terms of side effects I experience the shakes in the mornings but nothing a sit down doesn’t fix!  Oh and an increased appetite courtesy of the steroids – but again, neither of these are a big deal. 

My visits have been reduced from three times to twice a week and the steroids have been reduced too.  I’ve already noticed that my appetite has lessened which is a welcomed change as I had developed an obsession with ice cream, chocolate and nuts eaten all together.  Sometimes, several times a day.

The immune suppressants aren’t bothering me much either. My recent results showed high levels of a virus which is now being treated.  I’d gone to see a morning screening of Disney’sToyStory3 the weekend prior and had probably picked it up from the roomful of children. Apparently it’s a virus that everyone carries and isn’t harmful unless your immune system is suppressed. So…a high temperature and the sweats at worst for me. I keep myself out of infectious situations and as advised I wear sun protection when I’m outside to avoid melanomas.

I attended a music festival in London’s Victoria Park this weekend – it was a blast to see all my friends again and to have a little dance, my first dance in months.  It was also really nice not to worry about fitting in dialysis treatments before and after, and even stayed over at a friend’s house after.  Followed by a long and lazy supper-alfresco the next day. The freedom a kidney transplant gives far outweighs what some may describe as the downsides.  I was absolutely shattered from the weekend dancing and I probably won’t be doing much dancing for the next few weeks but it was a fabulous taster of what is to come.

The Transaplant

Having no kidney function means that my blood count is fairly low, running at a Haemoglobin (HB) level of around 5. Despite which I still manage rush around between bag exchanges, nights out with friends, overseas travel and so on.  In order for surgeons to operate and for me to withstand the anaesthetic needed for surgery, my HB level needed to be raised to a minimum of 9. This was achieved with a series of three evenly spaced-out blood transfusions, with last one taking pace a week before surgery.  There were concerns that the transfusions would increase the level of  antibodies that I have against my Mum’s cells. A final cross match was scheduled to check anti-body levels, I think is procedure for all transplants and takes place about ten days before surgery.

I was also scheduled for anti-body treatment which I hear is widely available. This takes about 12 hours and is given via an IV drip usually two or three days before a transplant.  So far, so good; all painless treatments on the horizon.

One of my consultants had been stuck in the Far East due to flight delays caused by the volcanic ash cloud, so my operative date was moved from the 18th May to a week later - the 25th May.  I breathed a sigh of relief as the 18th was due to be my 33rd birthday!  Birthday celebrations were back on the cards and couldn’t help but book a cheeky weekend in Toronto, Canada.  The whirlwind trip was amazing and well worth it as I knew I wouldn’t be able to travel long haul for the first year after surgery. My birthday was fantastic and far exceeded my expectations. Again, I knew I wouldn’t be seeing my friends for a while so we made it intimate and very special.

I was admitted on the Friday 22nd May which left three days for the medical team to prepare me for the operation scheduled for Tuesday the 25th. On arrival my StaySafe CAPD line was changed to suit the machine used on the ward. I think it’s the older style machine which I’ve never used. I wasn’t keen on it as it meant one of the CAPD team had to come to the ward to connect or disconnect me, whereas I’m accustomed the independence and cracking on with my routine myself.  After the first night I asked them to show me how to disconnect and switch any alarms off so that I wouldn’t have to wait for them each time.  The alarms were a pain and woke me and the rest of the ward throughout the night.  A means to an end I guess!

The Anti-body treatment was started on Saturday night and continued through to Sunday night.  By Monday morning I was overloaded by 5 litres (kilos) and not very happy.  I mentioned it to ward staff but they looked at me blankly, so I left the ward and went down two floors to the CAPD clinic and found the senior nurse who I knew would understand my concerns. She sorted me out with a series of manual red bags throughout the day and an overload programme on the machine that night.  This brought me back to a dry weight of 53 kilos.  The anaesthesiologist who’d seen me the day before had said he wanted me fairly dry for surgery” but not crispy dry” as he was planning to ‘flood’ me during surgery. And boy did he!

Mum went to theatre at about 8.30am on Tuesday.  She was on the same ward as me in the bed opposite mine.  It was lovely having here there… and it was daunting when they came to get her. They came for me at about 1.30pm and I later found out that there were difficulties in reaching Mum’s kidney. As a result her part of the surgery took eight hours instead of the estimated four or five. I came back to the ward at 8.30pm and was put in a new bed in the transplant bay. I was elated when I woke up and fairly oblivious to the six new tubes, catheters and lines coming out of me from various places. I had little to no pain as I was still numb. I also had strong painkillers through an IV drip controlled by a handheld button, which I pressed – a lot.

Day two after surgery and the new kidney was showing signs of dysfunction. I tried not to worry but doctors looked concerned when they reached me on their twice- daily rounds.  I had gone from 53 kilos to over 65 kilos – a fluid gain of 12 litres which was massively uncomfortable. The fluid had reached my lungs so I had difficulty breathing.  It was also in my thighs, ankles, stomach, upper middle and lower back, chest – absolutely everywhere and was undoubtedly the worst part of my transplant experience. It was painful to walk, painful to sit and lieing down was even worse.  Sleep was impossible. The kidney was described as ‘sleeping’. It wasn’t filtering water out, nor was it filtering toxins and I’d had my dialysis line removed in surgery so there was no means of dialysing or removing excess fluid.

Usually kidney transplant patients are asked to drink plenty of fluid (water, tea, squash) after surgery to flush and kick start the kidney.  Left to its own devices the new organ doesn’t know what to do. I wasn’t comfortable drinking fluids given the amount that was overloading my system, so in my case I was given a fluid restriction of 1 litre a day to stop me retaining even more fluid.  I was told to walk as much as possible as exercise promotes fluid loss.  So I continued hobble up and down the ward corridor, tubes, catheters and all, day and night in a bid to loose some. I had been up and walking the day after surgery and was still swollen all over beyond belief. Couldn’t bend properly at the knee or the waist, it must’ve been a funny sight!

A scan of the kidney showed no visible problems. Blood was flowing through and it was plumbed in properly but still no function. Two days later another scan showed the same result. A transfusion was given as my HB level was beginning to fall, and Ferusimide to get rid of transfusion fluid.  I kept a positive and cheery outlook considering. By Friday there was still no function from the kidney so a biopsy was scheduled for Monday morning. Meanwhile doctors requested a new access line to be inserted into the artery in my neck and to my disappointment I was back to receiving dialysis - Haemodialysis this time. I had a two-hour session on the Saturday night to bring toxin levels down and remove 500mls of fluid. Not very much considering I had an extra 12 litres! I couldn’t believe I was asking for another session – which was promptly refused. 

The biopsy result on Monday afternoon showed there was rejection occurring in the organ - which, to a medical team - is good news because rejection is treatable.   Within an hour I was given a high strength anti-rejection steroid via IV infusion to stop me rejecting the kidney.  On Tuesday after noon the kidney woke up and I think the whole ward went into celebrations!  It had been a long uncertain week since the operation.  I was given two more nightly IV infusions of the same steroid and my anti-rejections drugs were tweaked slightly to manage the rejection. My immune system has always been high, I rarely catch a cold and rarely pick up infections so I wasn’t surprised that I had initially rejected.

My creatinine began to drop rapidly.  Pre transplant the level was around 1,800 and after the steroid was administered it dropped to around 300 and continued to fall.  The fluid loss was gradual. The consultants and doctors were extremely happy at the success and were as relieved as I was. Finally!  I could see how a transplant really is a better option than dialysis.

I went home the following Tuesday and have been at home recovering ever since.  I attended a clinic appointment the morning after I was discharged and was so tired and puffy that I went in my pyjamas! Fashion and style goes out of the window at times like this.

Two weeks later and the fluid is subsiding with total a loss of 9 kilos, toxin levels are continuing to fall.  I have two kilos to go before I reach a safe weight of 54.5 kilos. The medications really aren’t as bad as described pre transplant, maybe I have been lucky. I made great friends on the ward amongst whom we shared highs and lows of the experience and I see them each time I attend clinic. I attend the clinic three times a week which in time will lessen to twice a week and continue to lessen over the period of one year.  The medical team watch the organ closely checking blood pressure and reviewing a blood sample to asses whether changes to the medication needs to be altered. I’m looking forward to an uneventful year.

Wishing anyone reading who has a transplant in planning a pleasant and successful journey. It is - as Eric told me, a piece of cake.  It’s the doctors and consultants that have all the hard work to do; I can however only speak of my experience. I’m overjoyed.