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Jenn’s Story – Part 2

This is the second part of Jenns story. Jennifer is the eldest daughter of Elaine, Kidney Kids co-ordinator.

Jennifer’s time at kindy proved to be a great learning curve for her and she enjoyed the time she had there. She met some other children there with other medical conditions and I think it helped her to see that others had problems too and it wasn’t just her, although I’m not sure how much she understood from that perspective.

Jenn has a great sense of humour and even as a six month old baby she had a chuckle on her which would dissolve everyone into giggles, just laughing at her laughing. You could hear her at kindy if she was enjoying herself as there would be this chuckle and then it would be followed by a great peal of laughter by all around her.

When it came time to integrate Jenn into school we chose the school over the road as we felt it would be good for her to become independent eventually and be able to walk home from school.

That school was also prepared to get a teacher aid to assist Jenn in the classroom. The kindy teachers had checked it out and I went along for an interview with the social worker from CCS as a support person. I must admit that what happened next left me speechless, as I was totally unprepared for the attitude of the STJC and the Headmaster. After asking me about Jenn, and having me explain to them about her medical conditions, the headmaster sat there and looked me in the eye and said “Your daughter doesn’t need an education, she needs a babysitter.”

I was speechless and so upset I can’t remember the rest of what was said but I know it wasn’t nice. As I left there, all I could think about was getting out of there and getting away from the place. The social worker came home with me and we talked it through. I was so angry that I didn’t know what to do next.

If I had known then what I know now I would never have let Jenn go to that school, as it obviously had no idea on how to treat the children with special needs. I ended up talking to the psychologist to see what he felt was a better place for her to be schooled. Unfortunately we were zoned for that school and so it seemed that unless we were prepared to put Jenn into a special class we had to send her there.

When we went to start her when she turned 5 they told us that she would benefit from not starting until after she was 5, maybe 5 ½ years of age. We got her ready after the school holidays, and she was all prepared to start on the first day after the Christmas break, when the headmaster told us she couldn’t start as they still didn’t have a teacher aid to work with her, and until they did, she would have to stay home. That took them another week, I was not impressed and told them so.

School wasn’t easy for Jenn from then until she reached 8 years of age when we decided that we had all had enough. She was teased incessantly and when I approached the teachers or the STJC they did little to make her life any better. The children ostracized her and kids chased her around the playground teasing her.

There was a special class in Cockle Bay School, which was down the road, and although it was out of zone we could put her there if she went into the special class. I went along and checked it out and the teacher seemed very nice although she was very firm. The alarm bells should have started ringing there but since I was very new at this, they didn’t.

There were about 6 pupils in the class and they had a varying range of disabilities from mild to severe. Initially Jenn seemed to enjoy it and didn’t seem too worried about the teacher when she yelled at them for doing something wrong. It became obvious that Jenn wasn’t having as much chance at extending herself as we had hoped for. We would have liked her to be integrated with her own peers for different subjects and that didn’t happen.

We spoke to the teacher about it and really got nowhere. I had reason to speak very strongly with the teacher about several things that I wasn’t happy with to do with her teaching methods, after that life would settle down for Jenn for a while.

When Jenn was 11 years old we decided to move her to the special class at Pakuranga Intermediate which meant travelling further, but I really liked the teacher there as she seemed to be so much nicer and treated us as though what we wanted mattered. She was very impressed with Jenn and felt she would do well.

In the right environment Jenn blossomed and did really well. She really enjoyed her Intermediate years, she was challenged and enjoyed the hands-on work of cooking, metal work and woodwork. She produced some great work.

College was the next challenge. We managed to get Jenn into the work experience unit at Pakuranga College. The teacher there was also lovely and the pupils seemed to really love been there. She did really well with her work but life at playtime and lunchtime was a different story. She spent most of the lunchtime wandering around by herself not knowing what to do. She was very lonely.

 

At the age of 14 it all came to a head. She got really depressed and was feeling suicidal. Her personality changed and she became withdrawn and hated going to school. When I found out how she was feeling I got onto the counselors at school. I spoke to the teachers in her class and found out they were also concerned for her.

I felt so powerless; I didn’t know what to do or what to say to make her feel better. I felt so sorry for her, she was right; life had dealt her a raw deal. I talked to her about how she was feeling and nothing I said seemed to help. She was having problems dealing with her father and blamed him for what was happening to her. They had never really bonded and she felt he was giving her a hard time at home. She hated him and felt she wanted to move out, although I couldn’t see how that could happen.

We went to counseling as a family and things seemed to slowly come right. I took extra care at home with medication to ensure it was locked away and she didn’t have access to the key.

I wanted to wrap her up in cotton wool and take away all the hurt and make it all right for her. Unfortunately you can’t do that, and one of life’s hardest lessons is having to sit back and watch and know that you can’t always change things and make them right. Her kidney function was starting to deteriorate now as well and her general health was not good. What else could go wrong?

We were very lucky as about this time we got the chance to send her on a trip to Disneyland with Koru Care and Jenn was so excited to think that she would get this chance to go and see her dream come true. She was 13 years old. However there was one problem – Mums couldn’t go!!!!

Jenn got down on her knees and begged me not to send her the next day on the Disneyland trip. I knew she wanted to go but felt she needed me to go as well. It was really hard for me to do this, but I told her she was going, as this would be the only chance she would have to have a trip like this.

Seeing her off the next day was the hardest thing I had ever done. I spent the next two weeks wondering if she was coping ok. When she came home, she came running through the doors at the airport and was so excited about where she had been and what she had seen. When I asked her if it was worth while she said it was the best thing I could have done. She slept on and off for a whole week after that as she was so tired. It was worth the hard work of raising the $3000 for her trip just to see her face light up with all the adventures she had had.

The next two years at school proved to be a mixture of good times and bad. She met up with a friend of mine’s daughter, and she seemed to have a better time at school. Sarah became a friend and that is just what Jenn needed. She spent time at school with her and introduced her to some of her other friends. Jenn spent time with them at morning tea and lunchtime and life held some things for her to look forward to. They spent time going to the pictures and shopping and Sarah and her brother and sister came around after school to our place so their mother could work.

Since Jenn was 8 years old we had been going to see a really neat guy called Tony Norrie, who is an osteopath. One of the parents in the group had told me about him and how wonderful he was in helping her son on the way to good health. We gave it a go and he did cranial osteopathy on Jenn. Gradually we saw an improvement in her blood tests and she seemed to start growing again. (The doctors had told me she would probably need to have dialysis by the time she was 8 years old and if she got past that, then puberty would be another difficult time for her.)

Tony has been a wonderful support for Jenn over the years and he is the only one who has “actively treated her”. I credit him for her getting to where she was without too many other problems that Kidney Kids can have.

However, now Jenn’s general health was going down hill and she was finding it harder to cope with a whole day at school. She was frequently sick and tired and didn’t feel well enough to do very much at all. We continued to see Tony to keep her as well as was possible.

She wasn’t learning anything new at school as they spent a lot of time going back over work they had done the previous year. Jenn was getting bored. Another dilemma – what did we do now? Was there anywhere that was suitable for her to go that would cater for all her medical needs and stimulate her and keep her interested?

The teachers at the school were very helpful and suggested a course at Manukau Tech called “Choices”. It was a course designed for students who hadn’t any qualifications from school and it taught them life skills, like budgeting, computing, cooking, horticulture, and others, and they also had to spend some time in a work experience situation. We went along for an interview and they accepted Jenn onto the course. It meant getting her out to Manukau every day and because of her increasing tiredness, walking and catching a bus anywhere wasn’t an option.

I was lucky that I was working for Kidney kids and my time and hours were very flexible, enabling me to transport her there and back each day.

She enjoyed parts of this course and getting to meet other people was an added bonus, however most of the students also had a disability as well and Jenn felt that she wanted to spend more time with people who weren’t disabled. She managed to complete the year at Manukau and earned her certificate even though she had time off for being sick a lot. She worked hard to make up for the days she wasn’t there.

The next skill we needed to work on was her typing and computer skills. We looked into getting her into a computer and typing course. She managed to start at the beginning of the year and seemed to enjoy it, and enjoy meeting the other people in the class. We had a teacher aid, so when Jenn couldn’t go to class she went and took notes for her so she could catch up later. After six months Jenn had had enough of that one too. She wasn’t really interested in computers and typing, her real love in life was animals.

It started me thinking that maybe we were trying to steer her in the wrong direction. I started looking into courses at Uni. Tech as they were the only ones who covered animal care.

I went along and spoke to the tutor and they seemed reluctant to take her as they felt that she wouldn’t manage the work or exams and they didn’t want to set her up for failure. After talking to some support people and getting back to the tutor with some ideas they agreed to take her on. She was going to do it part time, as full time would be too tiring for her. It was one night a week from 5 p.m. to 9 pm. I was concerned about the 4 hours of constant work but Jenn assured me she would be OK. I was going to go along as her teacher aid and help write up her notes and assignments for her.

I was looking forward to it as we already had four dogs, three cats, two birds and tropical and cold water fish, and I felt that it would be a learning curve for me to go and do it so that I could learn something as well. After all, having that many pets meant that it might help if I had an idea what to look out for when they were sick.

We started in September 1999 with a course on cats. Jenn loved it. The assignments were a problem as Jenn’s concentration and retention skills weren’t there and so it was hard work getting the information out of her and getting it on paper. On top of that she had Dyspraxia to hinder her as well. She managed to cope with the assignments and also managed to pass them which was a great boost to her flagging confidence and her ability to achieve in an area she enjoyed was great to see.

We enrolled in the course again in 2000, however we decided to only do part of it again to enable Jenn to cope. She started off well, but by March it was clear she was having problems with her health again and her kidneys had just about stopped working. She was becoming very toxic and found everything was a major effort. She went into hospital to have a Tenkoff catheter in her pelvis, for dialysis to start in early April – and at the same time my Mum was called in for major back surgery.

They ended up in hospital at the same time and I was finding it really hard to decide where I should be spending my time some days as Mum had complications after her surgery and Jenn had a lot of pain after hers too. We went home after four days with Jenn, and Mum came home a short time later, which gave me a few days at home with Jenn to help her recover a bit more.

She was still in a lot of pain and we went back to see the doctors. After putting some fluid into her peritoneum and flushing it out again they found out she had peritonitis. Back into hospital again for Jenn. Between looking after Mum, Rebecca still had school and then spending as much time as I could with Jenn, my days were pretty full! They kept Jenn in for about 5 days to give her antibiotics directly into the peritoneum to help fight the infection. She came home and felt much better for a few days.

A week later she was feeling unwell again and so we took her back and guess what – yep she had peritonitis again. Back into hospital again and back to the routine of running back and forward to the hospital and looking after Mum and Rebecca, at the same time.

I couldn’t understand how she was getting the infections, as we weren’t even dialysing at this time. Apparently she had peritonitis from the tube being in there and they started to query whether she was reacting to the material the tube was made of. She also had an infection around the exit site of the tube, and so we were trying to clear that up as well. She was not very well.

She started dialysis training on May the 1st 2000 and did extremely well on learning how to do her bag exchanges four times a day, and after three days was able to dialyse at home by herself.

It was a big learning curve for us all and our lives changed completely. We took a while to get into a routine at home and work out a system that suited us all. Mum fitted in and was no trouble. She seemed to be making good progress and her surgery had been successful. For someone her age (76) she did really well, considering the complication of losing 8 pints of blood and having it transfused during her surgery as well.

We were back and forward to the hospital about three times a week, due to the problems we were having. After about two months things seemed to be settling down again and life became a bit quieter. We still had doctors visits for all of us and specialist appointments for Mum and Jenn. The nurses and doctors at Middlemore in the CAPD renal unit and Ward 4 were wonderful. Nothing was too much trouble and it wasn’t long before we felt we could really trust them with any concerns we had, as their knowledge and ability to troubleshoot were fantastic. Jenn rather enjoyed her visits to the unit as it was like meeting up with old friends again. We were getting to know the patients and the regular visitors to the hospital. When Jenn had to be admitted to Ward 4 they were wonderful to her, and made her feel very at home.

Jenn was given a cycler machine, which she could use at night, and it would do her dialysis for her while she slept. The day we started to use it Jenn started leaking into the tissues into her tummy and so we had to reduce the amount of fluid to see if it would heal and stop leaking. While it was leaking into the tissues it wasn’t dialysing her effectively and so after several months of trying to increase the amount of dialysis fluid again, she would start leaking.

Eventually the doctors said she needed to give her tummy a complete rest and they inserted a tunnel line into the veins and artery in her neck to haemodialyse her for a while to see if it would help. It was inserted under the skin just above her right breast and tunneled under and up over her collarbone into the neck.

Just after this was done Rebecca was having surgery to tighten the top of her tummy as she had very bad gastric reflux and medication wasn’t helping her. We went into Mercy hospital and while we were getting a blood test done the specialist rang from Middlemore to ask if Jenn could go back to dialysing with the cycler machine again. She wouldn’t have to start until the Sunday so hopefully I would be home again by that time as I was staying in with Rebecca. It was supposed to be a three days stay and Jenn was feeling better and so between her, Dad and Mum they held the fort until I came home.

Well, Rebecca never does things by half – she ended up with complications and vomiting and we were there for five days altogether.

Poor Jenn by this time was feeling very unwell and when we finally got home she had had diarrhea for two days. Off to the doctor’s, to find that she had a bug in the bowel. They started her on tablets, which made her feel nauseated, and she started vomiting about four days after I got home with Rebecca. I rang the local A&E and they asked me to bring her down to be seen. Not long after we got there they sent her through to Middlemore, as the doctor was concerned about a bug in her tunnel line.

We didn’t have any of her dialysis stuff with us and I was concerned as they sent us down to the Ward where they assess and admit everyone and none of the nurses knew how to set up the cycler machine or how to dialyse her.

Jenn by this time had thrown a temp and was not capable of doing it herself so I ended up staying until 3 am when I could finally get her hooked up to the machine after numerous x-rays etc had been taken. I came home for a couple of hours’ sleep and then went back again to see how she was and to make sure she had no problems with her machine.

She ended up in hospital for 8 days as she had not one, but two bugs in her bowel, and an infection in her tunnel line. No wonder she felt so ill.

They decided to remove the tunnel line and try her back on the cycler machine again with partial fills, and with Jenn also doing a bag exchange during the day.

After a while it became evident that this still wasn’t enough dialysis to keep her well… and then she had a massive leak of about two litres of fluid into the tissues. That was the end of the cycler dialysis and so it was back into the hospital to have another tunnel line inserted. Jenn wasn’t too happy about that as she could remember the other one going in under the local and found it quite distressing.

They took her down to dialyse the next day and I think that at that time she was as close to dying as she could be. She had gone very quiet and felt terrible, she just lay there not talking or anything. My heart was breaking, seeing her going through all this and not being able to stop it from happening. After the third lot of dialysis she began to feel better and was nearly back to her cheerful self.

During the last eighteen months I had been steadily losing weight as I was going to donate one of my kidneys to Jenn to give her another chance at life. So far I had lost over 30 kilos and was getting to the weight they wanted me so they could operate. In April 2001 I got a call from the transplant co-ordinator at Auckland Hospital asking if I could go and see the surgeon the next day- a Wednesday. I was rapt, as I had an appointment to have a CT scan of the kidneys on the following Monday and so I went up to see the surgeon in the afternoon. Jenn was disappointed as she was dialysing and so had to go to the hospital instead of coming with me.

I went armed with lots of questions to make sure I had all Jenn’s and my own concerns dealt with. One of the concerns I had was to do with a clotting disorder that I had and I had already had three separate episodes of deep vein thrombosis in my leg when I had previously injured myself and I had already addressed these concerns with each of the doctors we had seen over the last eighteen months. Mostly they didn’t seem too concerned, and they told me I would be given heparin to stop any clots from happening.

When I went into see this doctor, he floored me as he was very concerned about the risk to myself and made it very clear that it was a life-threatening situation. If I had a clot I risked dying and he would not take the risk and use me as a donor. I was really upset and while I could understand the risk associated with me and after talking to him at great length, I expressed my frustration at the way it had been dealt with during the last eighteen months. I felt that it shouldn’t have been left to the last minute before they discovered that the surgeons felt it was too much of a risk to operate, especially when it had been brought up several times by me in different conversations.

I was more disappointed for Jenn as she had built herself up to looking forward to been able to get a part time job and also to finish her course in animal care. Now none of that would be possible. I left his office fighting back the tears and went to my car. I was supposed to ring Jenn and let her know but I couldn’t bring myself to do that. I felt I had to tell her myself and if I didn’t do it then she would realise that something had happened and worry for the rest of the time until she got picked up by me in the evening. I had a cry while I was driving down the motorway to release some of the frustration and disappointment I was feeling. I hoped that no one could see me while I was driving as I hated anyone seeing me cry.

When I got to the unit I told her straight away and I could see the disappointment in her face but she knew I was really upset and held it together well. She told me she would rather have me than a kidney and I knew that she could see the reason why they wanted to leave it. Over the next few days we talked about it more and I explained it further and she was great although she was also really disappointed.

I guess it is like dangling a carrot in front of a donkey’s nose and then suddenly taking it away and saying – you can’t have it now!

We continue to see Tony, her osteopath, as he has managed to keep her general health better than it would be otherwise. I firmly believe that he has helped her considerably over the last thirteen years and only wish I had known about him sooner. Sometimes conventional medicine is not enough for our kids and if other methods help then I am prepared to try it to improve the quality of life for her as much as possible.

Just a word of caution here however – if your child is in kidney failure then you must not use any other natural medicine, e.g. tablets, vitamins etc unless the doctors know about it, as your child could become toxic very quickly if they are unable to excrete it normally. Any medication they are prescribed by medical doctors must also be given while other treatment is undertaken, as it could endanger the life of your child if they are stopped.

Jenn has been haemodialysing now for several months in the Selfcare unit at Middlemore and she has been better in health that she has been for awhile. It is obvious that haemodialysis is better suited to her and she has steadily lost weight as well so that if a transplant came up she would be able to have one. She is training to go on and off the machine by herself and she is making steady progress there.

She is enjoying meeting others who have similar problems to her and has made some friends with the ones who come on a regular basis. The nurses there are fantastic as well and Jenn has made a great impression on them with her personality and generous nature.

Rebecca and I went and did a talk to some telemarketers who were fundraising for Koru Care, and one of the gentlemen there offered a kidney to Jennifer. It turned out that he was compatible, but I told Jennifer not to get too excited until she was on the table waiting for it to happen. Unfortunately I forgot to tell myself that.

We received word that the transplant couldn’t go ahead as apparently he was a heavy drinker and they felt the risk to operate on him was too great. This was another disappointment for us all as we hoped that this would work out OK.

Now I guess that we just have to keep on hoping that Jenn will get an opportunity to have another transplant soon and that her life can be better than it is now. She is very brave with all that she has been through – it has made her a very caring and sensitive person. These are qualities that I am glad to say have made her a better person. I am very proud of her for what she has achieved despite the odds she has had to endure.

Jenn has just turned 21 – what better time than to start a new life?

Let’s hope it happens.

June 2003

Unfortunately this kidney was not to be for Jenn either as they turned him down as a donor at the last minute due to a drinking problem he had that he didnt reveal at the initial consultation. This was big let down for us all and we were very disappointed for her.

Jenn has now got osteoporosis due to her parathyroid glands being overactive and she had to have them removed from her neck in December 2001. Afterwards her hormone levels continued to be very high and they took a lot of the calcium from her bones causing the osteoporosis. We are hoping that will get no worse.

In September 2002 we got a phone call from the transplant unit at Auckland Hospital to tell us they had a kidney for Jenn and could we be there in under 1 ½ hours !!!! Jenn was still in bed as it was early in the morning – they were hoping to have her in theatre by lunchtime. I wasnt sure where to start as Rebecca still had her paper round to do, because the night before we had had doctors appointments and didnt get home until late. I woke Jenn and we rushed around and packed a bag….. I threw that and Rebeccas papers in the car and Rebecca ran around while I passed the papers out the window to her. Friends of ours were in Aussie and we were also feeding their cat so I had to rush in there and do that and then we headed off to the hospital all excited at the prospect of the change in life this would have for all of us.

At the hospital it was all on again as they took blood and did weight and height etc to ensure she was within their criteria. Unfortunately she didnt fit into the BMI the doctor worked out there even though she was within the one they gave us for her from the doctor at Middlemore hospital. They turned her down and decided that she couldnt have the kidney as she might get complications that could cause her to get really sick afterwards due to the drugs they had to give her. This was the third time we had got our hopes up and it was very depressing for Jenn to have to deal with this yet again. I felt awful too as we had rung and told some people that it was finally happening and having to ring and let them know it hadnt happened was very depressing for them and us as well. It seems to be that she wasnt supposed to get a kidney and even though they told us it wasnt as good a match as it could have been it was very disappointing.

Jenn is still on haemodialysis and goes to the unit 3 times a week for 4 hours dialysis each time. The total time taken up is about 6 hours when you add travel and setting up and cleaning up afterwards.

She is going through a stage of wanting so badly to go and be independent and have her own life flatting and having a job that her self esteem is starting to get affected again. We are looking at setting her up in a facility that helps young adults with medical and learning disabilities to become independent in the community but still supports them in a shared flatting situation.

This is still in the early stages but there is very little out there that parents can feel happy about letting their young adults stretch out and flutter their wings to enable them to be in the “norm” for their age group.

I am hoping that a kidney will come along for Jenn this year and so now our goal is to help her to get fitter and lose some weight to get back on the transplant list again. She doesnt have very far to go on the weight side but getting rid of the extra fluid is still very much a challenge on a daily basis as it is a fine balance as to having too much taken off too quickly and her blood pressure dropping, and not enough taken off.

We continue to live in hope that things will get better for her and look forward to the development of stem cells and genetic engineering to help us improve her life and that of her sister and father as they move along the same roads eventually.

Elaine Simons

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