Part 2 - diabetes was the gang ring leader

After two weeks stay we decided that this would be the safest option as I was told that this infection would return at some point and my foot would not survive this again and neither would I. When you have a young family who are your world and need you, you know that to take my foot is trivial in comparison to taking my life.

The day before the surgery was scheduled my husband asked a very obvious question which we had missed. What is the percentage chance of me keeping my foot? The doctor replied 75%. What!We all turned to each other and agreed that 75% in my favour are damn good odds. I was discharged on antibiotics and never returned to hospital with any infections or further problems from this injury! My right leg is 2cm shorter so I do have a limp and I am unable to walk long distances as I get severe cramp but so what!! Doctors are highly trained and skilled people, however sometimes you just need to ask the simplest of questions no matter how daft you think they sound, and go with your gut instinct!

In 2008 I gave birth to Luca Dil Mistry 2lb 8oz, born at 29 weeks 5 days. My little gang was becoming bigger. I thought three members were enough, for now anyway. Diabetes was the ring leader. My eyes were well and truly welcomed into the gang to reign cruelty upon me and my family. My feet were the third member to join up and this member would be a veteran in the gang given time, as long as diabetes was the leader my feet would always be ready to strike upon me. But there is one more gang member yet to join and he is the underdog.

Creeping up whilst all the others were picking on me in their own way, and then challenging the ringleader for pole position. End stage kidney failure. In 2009, following a pneumonia scare in the March, I wasn’t continually admitted to hospital due to severe gastroparesis, where the vegus nerve near the stomach is damaged and triggered each time you eat. This means you vomit incessantly for days and days.

You become dehydrated, very weak and anaemic. I had several tests done, endoscopies, nuclear medicine tests, stomach emptying tests to see why this was becoming worse. This procedure involved eating a radio-active pancake and having x-rays taken to monitor how your stomach empties this pancake. I was admitted in the September and was not completely discharged and recovering until February 2010. I was admitted to the same general medicine/diabetes ward over and over again.

I was the only Type 1 diabetic and they treated me like I did not know what I was doing with my insulin and they knew more than me. I fought this battle and won. However, this was one of many and I was not as successful in all of the others. I had kidney failure. My potassium level had risen so high that there was a chance of my heart stopping. This was monitored every day. Monitored and treated with the same medication each day as the levels continued to rise. I was overdosed on morphine due to my kidneys not functioning properly. I was taken to intensive care and put on a ventilator until my levels were back to normal. Apparently I had taken an overdose of something!!!??

My left leg grew to twice the size of my right leg so walking and going to the toilet became almost impossible.

Due to the pain in this leg I was prescribed MST pills, which are long-acting morphine tablets to help with the pain. It was during this time that my heart gave in and I was rushed to ITU with suspected overdose due to my deteriorating kidneys being unable to flush the medication around my body in the way it should be! I was suspected of overdosing, not quite sure to this day how and why they thought I could do this as I was so poorly and with no way of acquiring extra morphine.

I was still an in-patient on this same ward, despite a two day trip to ICU, It was almost December 2009 and I had been incarcerated since September. Luckily for me there was a renal doctor was doing a placement on this ward. She was my angel. After three months in hospital, and being in a considerably worse state than I had ever imagined when I was admitted, this sounded like a dream come true.

On the 23rd December 2009 I discharged myself. I had been given this day as a discharge day for almost a week and this was also confirmed the day before. I was desperate to get home for Xmas. We had two boys of 10 months and 4 years and we had no presents at all for them as my husband worked full time and looked after them whilst I was a in hospital.

When I returned home I could not walk up the stairs so I crawled struggling to lift my weight onto each step. During the night my condition deteriorated and I struggled to breathe. Luckily we still had some of the oxygen cylinders left over from the treatment our youngest son needed after his birth. This helped but I knew I could not stay at home like this. I returned to the same bed in the same bay on the same ward. I had given up completely.

Luckily the renal doctor rang her colleagues where she was based in the other hospital campus site. They told her to get me there ASAP as my potassium level had now reached a dangerous 8, when it should ideally be 5. I was transferred there and immediately had a dialysis line inserted and I began my first session of dialysis on Xmas day 2009 at 2am in the morning. The doctor who admitted me was extremely concerned that I had been left to get in this state before he had even been contacted, never mind the dangerous potassium level, which, as I discovered later, could and should have stopped my heart weeks before. I did not see my boys that day and I had a cracker for one on my meal tray, a little gift from the nurses, and a carol or two at my door courtesy of the Salvation Army. I began to feel slightly better after that and was discharged home one week later for three days.

I was readmitted after I began to deteriorate again on the 4th January 2010. We had called my GP who came to our house. He reassured me that he would see me again and this wasn't the end of me yet. The fact that he said that alerted me to the fact that I may never come home well again if at all. I had a peritoneal dialysis line inserted so I could have overnight dialysis at home. I had several days of haemodialysis in hospital to drain all of the excess fluid away. I lost approximately 25kg in 5 days. So from February onwards I dialysed at home until an infection meant I had to return to 3 haemodialysis sessions a week for 4 hours each time.

During this time I was placed on the kidney and pancreas waiting list in Addenbrookes Cambridge. The doctors agreed that there was an imperative need for a transplant. The surgery would last approximately 7 hours and would mean a lengthy recovery both in and out of hospital, which was almost 100 miles from our home in Nottingham.

During this time my family were tested to see if any matches for a live kidney could be made. I am an only child which in this situation is the last thing you wish to be. Due to me having several blood transfusions over the years and two pregnancies, I had built up a massive army of antibodies which would in no doubt fight any organ sneaking in. This also meant that it would be very hard for someone else to have the same levels and type of antibodies as me. In October 2011 we found a match of a kidney only.

Using a Paired Exchange Scheme a donor from Ireland would donate their kidney to me; my husband would donate his kidney to their partner who needed a transplant. So we swapped. We amazed everyone as the chances of matching me were so low as well as the chance of my husband matching the other person in need of a transplant. It all went head and I am slowly returning back to some reality. I decided to go ahead with a kidney only transplant as this was the condition which was restricting me the most at that time.

I needed to be better around my boys and a kidney would mean no more dialysis, tiredness, sickness, so I opted to take it as I know this could be my only chance. Pancreas only transplants are done now so this could be an option for me in the future. I told you this was the underdog of the gang. My diabetes had taken a back-seat for a while during this time, but it was still there waiting to pounce on me again!

But no. It was a good try but the diabetes gang-leader is still in control and the kidney gang-member owes it all to the leader, why else would the kidney gang-member be there if not for the diabetes leader? I am now waiting to be fitted with an insulin pump. Since my transplant my bloods have been really good, however this is partly due to several severe hypos. Some I can control myself. Some my little boy and my husband help me get some juice etc. Some hypos mean my little boy has to try and lay me safely and help me drink some juice, or if I have passed out he and my husband use my feeding tube to administer sugary fluid (inserted during the gastroperesis days).

As you all probably know how frightening it can be to wake from a hypo and remembers chunks of information but not all, and you don’t know what happened when, where you may be and why there is a crowd of people standing looking down at you, talking about you.

The only comparison I can make is with waking up in the morning after a heavy night drinking. You can remember bits but memories are sketchy, you have a blinding headache and just want to crawl under a blanket in a dark room and sleep. That is my experience. If this insulin pump doesn't significantly improve things then I will be placed on the pancreas only transplant list in Addenbrookes. However this is a complicated operation as I have been told it is an easier procedure when transplanting kidneys and pancreas. Complicated further by my plumbing.

Due to the DVT 4 years ago my left leg is unable to be used as the veins have been clotted off. My kidney is plumbed into the right leg so there is nowhere to plumb the pancreas. A piece has been written detailing how to plumb the pancreas into your colon around the back of your body. My surgeon has not performed this procedure but is very willing to do so. To do this is a big decision, especially after all my family have had to go through it is nice to have this respite time, but I have to consider how my hypos also affect my family and that all my little boys wrote on their Christmas lists was for Mummy not to be diabetic. A hard one to swallow as all you diabetic parents out there would agree. We continue to work together as a family and stand up proud each day. It is not always easy but we get through it and that is that. We move on to the next challenge the next day and so on!

I would like to finish off on a happier note. My diabetes is now my best friend and I'm really proud to admit that I take care of my diabetes now. It is not the enemy I once thought it was and my health is improving each day. Please do not think of this as a negative story but one that shows no matter how dismal the future seems, and how you cannot imagine any more things to go wrong you can do this and carry on. It is not about beating the diabetes but about making friends with it and enjoying a good relationship with it. Thank you for taking the time to read my story and I welcome any contact from any other people who know how hard living with diabetes is but how rewarding it can be when you get it right and take control of it. That is something no bullying gang leader can take away from you.