Ngarie’s Story “No Strings Attached”
This is a story of what I went through in the process to becoming a living donor To help my Youngest Brother Hayden
In and thru all of this he was and always be my true hero the suffering pain and general sickness that he learnt to live with was unbelievable he never at any point complained or asked for the kidney from the very beginning it was my idea even though he knew he could have been dependant on a dialysis machine for many years to come. He was always very concerned about the decision that I made to help him in this journal it is only my point of view.
It wasn’t until I had arrived in Adelaide that I really began to understand any thing about all of this what people go thru and see, feel and generally learn to live with that are in renal failure
On the 17th of November 1999, my brother Hayden received a new kidney. He required the kidney as his own were failing due to nephritis. This means that they slowly stop working over a period of some years. His story may differ a little bit from this, but this is a journal of the process from my perspective. I was the donor, and if this story helps someone else through the process of becoming a donor, or encourages someone else to do the same thing then I will feel as though I have done a little bit to help. I have a young family and run a family business with my husband Grant, so I am no different from most of the people out there. I have no special gifts or qualities that made me able to do this, the only quality that I consider relevant is that I was willing.
I was down in the shearing shed when I heard the mobile ringing in the car. Dad had left a message to please ring regarding Hayden. I returned his call. Hayden had been in Adelaide to see a specialist regarding the kidney problem he has . The outcome of this appointment was that he would need a transplant in the next 18 months to 2 years. Of course he was devastated and upset. My first reaction and comment was “Don’t worry, you can have one of mine”. I never thought twice about it. Emma (Hayden’s partner) contacted the doctor to inform him of my choice and idea and that started the ball rolling. (It seemed to roll very slowly, but roll it did)
I received a letter from Hayden’s Doctor today informing me to go to my local G.P. on the 22/2/99 for a blood test to be done. They would then courier the sample to the Red Cross in Adelaide so a cross match could be done. I went to see Dr Davies almost straight away. He advised me to go to R.P.H.(Royal Perth Hospital), as being in the country it would make the blood another 12-18 hours old before testing. He was very supportive of my decision and offered all the support in the world. Dr Davies rang R.P.H. and found out what I had to do and where to go.
The kids are going out the farm (where Grant’s parents live) this morning to spend the day and I am off to R.P.H. for my blood to be taken. Hayden and Emma are in Adelaide for the same test. I feel really positive about this. Well I arrived at R.P.H. on time (for a change). I turned up at the blood room and they knew nothing of my quest or me. They then referred me up to the bone marrow unit. On arrival I realised I was in the wrong place. They were really helpful and sent me on to the renal unit. I was told to sit and wait for Dr M. Thomas – it seemed to take forever. Grant came with me for this visit and was looking very bored by now. I spent the time looking at all the info on being a donor. Dr Thomas came out and spoke to me, he asked many questions about lots of things and went on to tell me that I can’t just walk in here and become a donor. I was asked to join the program at R.P.H. and attend clinic on a Tuesday with Dr Thomas. Don’t know if I like him at all, my first impression isn’t good. After returning home after my first trip to R.P.H. and having tissue test done, Hayden & Emma had organised for a beautiful standard rose to be delivered with a card thanking me for being unselfish. Mum & Dad had also sent a beautiful bunch of flowers saying how proud they were of me.
The kids are once again going out the farm and yes, I’m going back to R.P.H. to the clinic. I still don’t have the results of the tissue type test back yet. Maybe Dr Thomas knows something, fingers crossed. Anyway there was a wait as usual at the clinic. Dr Thomas asked more questions did all the routine things, blood pressure etc, etc. I was then sent down to the blood room to be tested for everything and I mean everything! I also had to fill out a form on my history and so on. I now have to say that my first impression of Dr Thomas was wrong and I’m glad that he will be my doctor. I feel very comfortable with him and like his directness, no flies on his back. Still no test results …. Emma rang today, I was on my way to Northam and she had the test results. I was almost too scared to ask, I so much wanted to do this;
YES YES YES!!!!!!!
It did turn out to be in my favour. Thank God.
There have been so many offers of support through this whole process, it’s been just amazing. There have also been some unexpected reactions. Some really surprised me. Jackson is one of my sons, he is seven years old and has shown a real interest in all the gory bit (true boy). He wants to know where I’ll be cut, how many stitches etc etc. Breanna is three years old and really isn’t that interested at all. She just thinks it’s wonderful going to stay with Grant’s parents while I travel to R.P.H. and also she is quite young. Craig is one of my stepsons, he is 21 yrs old, and thinks it’s great that I’m trying to be a donor for Hayden. Ben is 18, he is my other stepson. Ben’s reaction surprised me – he said he was worried and didn’t know if he could do it if needed. I talked to him about this and said that it was a very personal thing and it was something I felt very positive about. I believe it is up to the individual it doesn’t mean you’re bad if you can’t for whatever reason it may be .At end of the day you have to be comfortable with the choice you make.
Mum & Dad must be worried sick. I can’t imagine what they’re going through. Grant is my husband he has been supportive but also is worried. I have a really good feeling about this and believe with all my heart that it will work out and be successful. When I got my tissue test results back I thought that was it! I was going to be the donor! I was told I had just run the first metre of a 100 metre race and I still had a long way to go yet. It is a race I plan to run and win for both my brother and myself and win I will. Pig headed is something I am and until a test shows differently I will believe that I’ll be the donor. The one thing I have learned is to trust my gut feeling. I’m here for the long haul.
Hayden isn’t doing too well at the moment, his creatin level is really high. He now has the flu and also gout in his toes (feet) and is finding wearing boots very hard and painful. I think the whole thing is only around the corner now, so much for 12-18months. I feel I’m ready whenever. Jackson has been asking many questions. He wants to know the ‘ins and outs’ of it all. Breanna still isn’t fazed by it at all. Her attitude is whatever, whenever.
I received a letter today from Hayden’s doctor informing me that his condition has deteriorated and the time has come to start planing for the transplant. I can’t imagine what he is going through, I cried when I read the letter – not for me but for Hayden and how sick he is. I spoke to Dr Thomas, he knows nothing of it but has asked me to attend clinic on the 27/7/99. I’ve just heard from Dr Thomas and he has arranged the tests that need to be done. He also informed me that I don’t need to attend clinic on the 27/7/99. I’ve decided to still attend clinic anyway, I’d like to ask a few questions
Well I’ve attended clinic today. I was running late and got held up in traffic and I missed Dr Thomas. It must have been a rare occasion that clinic was actually on time for a change (I was only 15 minutes late) so I waited quite some time before seeing another doctor. He wanted me to redo tests and so on as he wasn’t too sure of what was going on. This made me feel quite uneasy but I did go down to blood room and had all sorts of vials filled with blood for different tests. I also enquired about having my next set of tests done sooner but was told 10/8/99 was quite quick, two weeks away and there was no way I could have them sooner. Never mind (I do really, but that’s got nothing to do with it). I spoke to Hayden and Emma tonight and told them that today was a complete waste of time, my fault for being late so nothing was gained at all really.
I spoke to Hayden today he is really concerned about the effects this will all have on my life later. I told him it is some thing I really want to do. I would be fine in the long term, in the short term there would be recovery, but after that I would be doing all that I do now. Somehow I got the feeling he didn’t believe me and I do understand that he is worried, but my thoughts are if I’m not why should you be? It will all be fine – I have a great feeling about all this and will do all that I can to help him as I know he would for me. There must be so much going through his mind, not only his own health problems but also thinking of how this will all affect me in the long run. I will be fine after the recovery, I know that much.
I’ve organised for the children to go out to farm on the 9/8/99 as I will travel to Perth the night before I have test’s done. I’m staying with a good friend and her mum overnight. Rob will then take me right in to R.P.H. as my clinic appointment is at 9am. I’m now fasting and have been since midnight.
I’ve arrived on time just for a change. I’m sure poor Hayden& Emma are wondering if I made it or not. I have just seen Dr Thomas and have also been to the blood room to give a bit more blood for more tests to be done. I’ve also had my kidney’s ultrasounded. The nighties they make you put on for these tests are so degrading, it reduced me to tears. I felt horrible. The ultrasound seemed to go well. My kidneys look good. But I won’t have test results for some time, about 2 weeks. I also had a spiral c.t scan that was weird – they put some kind of fluid into your veins (via a needle near your wrist) and then took pictures of my kidneys and other organs. The fluid gave a weird sensation like you were wetting yourself – luckily the nurses warned me of this, as I would have really panicked. It was about 4.30pm before I left hospital, long day. I always seem to feel so lonely in the hospital. Never mind, today’s over and I just have to wait for the test results. I’ve spoken to Mum and Dad tonight but couldn’t really say much until the tests come back (2 weeks). I feel I’ve spent so much time waiting it’s all you seem to do. I really feel for my brother, he now has a yukky rash on top of everything else. Apparently it comes with renal failure. He is also vomiting a lot and not sleeping well due to getting up all through the night for the toilet, he’s getting sick quick, losing weight and so on. Maybe they’ll transplant a bit (2stone) with the kidney since he needs a bit – I wish !!!!!!
Hayden & Emma have been back to specialist in Adelaide. They’ve received a written statement on the results of test’s and have set an operation date 15/9/99 but won’t confirm it till they receive the film from my tests so they can view the organ. Apparently all looks fine except that it looks like I have a 2cm adenoma on my left adrenal gland.
Well it’s now been decided that they won’t operate on the 15/9/99 as at this stage as they still don’t have the film from my test results. I feel really annoyed and frustrated. Hayden is now really suffering yet he still manages to work somehow.
They are talking about operating on the 20/10/99. This would suit me as I’d like to be around for my daughters 4th birthday. Fingers crossed, ha! One can only hope.
Well guess what, it’s been cancelled again. The growth that I have on my Adrenal gland has to be investigated further to rule out cancer although my doctor still believes it is a non-functioning growth not cancer. I am not worried at all and believe it is just a growth and that’s all, just a hick up.
I’m in clinic again now waiting to see Dr Thomas. I’m on time, he’s behind time, pity it wasn’t this way last time when I missed him. I’ve had to collect urine for 48 hours for this test. I was so scared coming here that I would drop it and the container split or something (just my luck!). It’s actually quite heavy. I came to clinic today with Pam (Ben’s mum). We’ve had lot’s of laughs so it has made it much nicer. I finally got in to see Dr Thomas and he still believes it will all be fine. My blood pressure is great as usual and he was sad for me that the operation had been cancelled again but wished me all the best and again congratulated me on my decision to be a donor. He also said he looked forward to seeing me upon my return from Adelaide and if there was anything I wanted to know just to ring him. He has being great through all of this, very helpful and very easy to get in contact with.
Well we have a confirmed date, 17/11/99. This is later than I ever thought and it will now be much harder for Grant and his parents with the kids. This is the start of harvest, what we call silly season. It’s flat out but I’m not complaining – we’ve got a date that’s confirmed at last!
My test results are back and it appears to be a non-functioning adenoma just above my left kidney. They have decided to remove this with the kidney during the operation while they are in there. Sounds good to me Hayden & Emma have now left the station for the operation and will return in Feb 2000.
I am trying to get organised in the office and house. Jackson is really worried now and also quite clingy. Breanna is excited about going to stay out the farm, not at all concerned, so that’s good. The boys are very supportive but are concerned also. I’m excited that it is all starting to fall into place. Grant is worried but very supportive and said he’d do the same.
I’ve had a call from Adelaide from the liaison officer in the renal unit to get accommodation organised and also get a ticket booked for the plane flight. They have informed me that I must be there the week before the operation. I hadn’t planned on that and don’t want to go that early but have to have more tests done in Adelaide. I thought I had already had them done. Wonders never cease, ha! Well the tickets are booked for the 10/11/99 at 5 pm. I’m to fly out of Perth, which will be okay, as the kids can come with me to airport after school. There’s accommodation organised for the 13/11/99, a unit at West Beach, so I’ve asked Emma’s parents if I could stay with them until then. They have been great.
Looks like I am organised at last, I still can’t believe it is actually going to happen. Grant’s looking at buying a new truck in Adelaide. I bet we cross paths somewhere. I still believe it’s more important that he stay with the kids than travel with me as much as I’d like it. They will really need him at this time especially, Jackson being that bit older and understanding so much more. He came home from the farm the other day most concerned and asked all these gory questions. After it all I asked what had made him ask them again. His reply was he’d just seen them remove the kidneys from a sheep and all of a sudden all he could think of was me having the operation. I then had to really explain in great detail what was going to happen and reassure him that I was going to be treated very differently than a sheep being killed for meat (farm kids!). I was only having one kidney removed and would be fine in no time. Although he had watched this process many times he had never taken much notice of the organs being removed but all of a sudden there was a connection. After we spoke about it in great detail he was fine
Well it’s not long now! Hayden & Emma have gone to see our Pop, he’s 96 years old and lives in Bathurst in N.S.W. They are also going to see Mum and Dad for a few days before the operation. Pops will be very happy to see them, he misses Hayden a lot. Well Hayden arrived to see Pop but has been put into hospital in Bathurst. He is really sick and can’t stop vomiting. It is part of the renal failure although they have been reassured that all is okay and to go to Lightning Ridge for a couple of days. They are due back in Adelaide the same day that I will arrive. I spoke to Mum & Dad today – they are very concerned for Hayden as he is still very sick all the time.
Robyn has organised tea for tonight out at her place as a last farewell and good luck before the operation. Grant flew out to Adelaide this morning to pick up the new truck and drive it back home. He should be back on Sunday if all goes well. Funny isn’t it, this week he’s there and I’m here but next week it will be in reverse. Last night was great, we had a ball! There were lots of laughs and I got to watch everyone else drink strawberry daiquiris – never mind. I got so many beautiful cards and gifts, some brought tears to my eyes. I’m so lucky to have such wonderful friends and family. My life has been truly blessed not only with good health but also the best family and family in-law and the great friends I have. Grant’s home, it’s Sunday and he’s right on time with the truck. The kids are pretty excited and it looks good. He looks tired but is also happy with the truck.
Now I’m running around like a chook with it’s head cut off making sure everything is done. Bad luck if it’s not! The local paper rang late this afternoon to ask if they could come out and do an article on the transplant. I said no as I’m leaving tomorrow and it’s just too much. I want to be with my family now, they understood and will ring after I return.
I’m on my way, I’ve just boarded the plane. Grant and the kids were with me and so were a few other friends at the airport. It was nice. I’ve said my goodbyes and I’m finally on my way I can’t believe it. I can’t wait to see Hayden & Emma as I haven’t seen them for about 18 months so it will be a bit of a reunion. The testing seems to have gone on and on but it will soon be over for Hayden. It’s now about 11.30 pm and I’m at Emma’s parent’s place. I had a good flight but I was shocked and saddened to hear that Hayden has been admitted to Royal Adelaide and is now in complete renal failure.
I was up early to go into hospital to see Hayden this Morning with Emma. We had to wait to see him as he’d been taken into theatre to have a shunt put in. It was about 9.30am before I saw him. I couldn’t stop crying when I saw him, he is so sick. I couldn’t stop holding him. I can’t believe they let him go this far without doing some thing about it. I was shocked, I never imagined for one minute he was this bad. He never complained. I thought my being a donor would stop him reaching the bottom but it didn’t work that way. I left there and went to Q.E.II Hospital where the transplant is going to take place. On my arrival I was informed there was a 60% chance the transplant will be cancelled as it looks like Hayden needs a blood transfusion. In that case it will be 3 weeks before they will operate at the earliest. I don’t want to go home, I don’t want this cancelled. Hayden is really upset about the news. I’ve just had my E.C.G. and also a chest x ray and met the surgeon that will perform the operation. His name is Mr Rao and he seems to be a bit hopeful so fingers crossed.
I’m now back at Royal Adelaide (RAH) as Hayden is having his first Dialysis. He looks so sick it’s scary and he is still vomiting all the time. Emma is really upset now seeing Hayden so sick. She is a real hero, so supportive for Hayden. He now being taken off dialysis and has a migraine so we’re going to leave him to sleep for a few hours and will return later. When we got back to hospital Hayden looked a little better but very tired. We spent quite a few hours there with him, still no news as to whether the operation is cancelled or not . I’ll have to go home if it is I can’t stay that long (3 weeks) and then return when they can operate. I really believe deep down it will go ahead. Emma said Hayden responds well to treatment so here’s to him picking up and it all going ahead. Kate tracked me down today after ringing every hospital in Adelaide (not really but almost). It was so nice to hear her voice and of course once I told her what was happening she reminded me of how positive I was when I left and to keep positive, all would work out in the end .
Hayden has dialysis again today and I have a glucose test to be done at Q.E.II and to see Dr Rao as well. I also have to watch a video on the operation with Toni, the very nice liaison nurse.
It’s now nearly lunchtime and still no word on the operation. I keep telling my self that no news is good news. I’ve seen the video, the operation looked good, not too bad and the pain thing doesn’t bother me. Neither does the wound when and if I ever get it. I wish some one could tell me how Hayden is going and if he’s any better this morning. I’m starting to feel very lonely now here.
I can go now, it’s nearly 2.30 pm thank god. If all goes well for Hayden he should be at Emma’s parents when I get there and so should our parents. I was so relieved to see Hayden there when I got there. He actually looks a bit better not so yellow looking at all. Maybe all will go ahead, hope so. Hayden has to go back in the morning for more dialyses.
Mum and Dad arrived safe and well, they look great. It was so nice seeing them as it’s been a while. They must be going through so much themselves, I couldn’t imagine it myself if it was any of my children. They gave me a beautiful fob chain in rose gold for being brave, it’s really beautiful and so very unexpected. The emotion is now running high The Doctors rang mid afternoon to confirm the operation YEEEEEEEEEE-HAAAAAAAAAA!
It will go ahead. We were all so relieved to hear the news. Sadly it didn’t last long, we were all laughing and really happy that it was happening when the hospital rang me to say that the glucose test would have to be repeated first thing Monday morning as I’m border line. What does that mean? Bad by the sounds of it. It’s Friday afternoon and now have to wait all weekend before there is any further decision made so again we don’t know what’s going on. This sucks big time.
I’m really scared now that it will be cancelled for good and another donor will have to be found. I can’t imagine what Hayden and Emma are thinking right now. I really want to do this, it has to be me, I have to keep positive, it will be me, please let it be me. Why does all this uncertainty keep cropping up. It’s really making me nervous. It will be me.
13/11/99 Hayden is going in for more dialysis this morning at RAH. It’s really sad seeing him there hooked up to that machine and all the other people of all ages and races. I’ve always nominated to be a organ donor on my licence since I was 16 and being here and seeing all this really makes you just want to tell everyone to consider it and make their feelings known to their family. It is worthwhile. While I was sitting in one of the halls yesterday I was reading the kidney news letter. I found this poem and it really hit a cord with me as it made so much sense and really confirmed all that I had always believed in . I will add it to the end of my journal when all this is finished and will read it to all four of my children and many others as well.
Hayden’s dialysis went well this morning. Mum & Dad came in to the hospital as well and sat with him so I took the opportunity to do some shopping for the kids and get them a parcel together to post home so they should get it about when I have the operation. This is all so much for Grant and the kids. I am feeling really home sick now and really missing Grant and the kids big time. We all moved into the unit today, it’s nice and right near the beach. Dad and I had a pizza tonight which was nice, it’s been great to be able to spend so much time with Dad and Mum. It’s been a while since we’ve all been together, about 6 years. It’s a pity that Hayden is sick, next time we all get together it will be in good health I’m sure and won’t involve a whole lot of hospitals. Just lots of laughs and good fun.
We had the day off today, no tests, no hospitals. We had a drive around Adelaide today and I went for a walk, it was lovely along the beach. We also went out for tea to a seafood restaurant. It was beautiful, really nice, yum! I spoke to Nanny(Grant’s mum) and Breanna and later spoke to Grant as well as Kate. It was good hearing their voices, I really miss them heaps.
Back into hospital this morning bright and early for a tissue test and to redo the glucose test. It has to be in favour.
Hayden was suppose to dialyze at 8.30 am this morning but it was 11.30 am before they had him hooked up. He is having trouble getting around now due to the gout in his foot. This must be frustrating for him – it is for me and I’m only watching.
I’m sitting in pre admission writing this and still waiting for the glucose results. I’ve never been so nervous before, it has to be okay. I’ve just weighed in at 84.9 kg, that’s more than I had thought, oh well such is life. I’ve spoken to a nurse and anaesthetists; this could take up to 3 hours they told me. Oh well what’s new. I’m getting used to waiting.
I have received my glucose results, they are now going to cross match them more because they seem to be so low. Well I’m out of pre admission and Hayden has finished dialyses and is at the dentist. They won’t operate unless all dental work is done due to infection after operation. I’ve now been here since 7.30 am this morning and it’s now 5.00 pm. Still waiting to hear back about the glucose test.
Well I have heard now and I am to repeat it tomorrow morning again. All I want to do now is go and ring Grant and the kids. They aren’t aware of all this with the operation still not being confirmed. I don’t think they really need to worry about it as well.
Having glucose redone, the nurses in the blood room are now calling me a pincushion. It is really starting to hurt now, my arms are bruised and sore big time. I have to sit here in the blood room for several hours and have blood taken every hour to watch the levels after taking the glucose drink. It is so boring, Mum and Dad float in and out and keep me company and I even managed to find a book to read.
Well that’s all finished now, only waiting for results again. I really don’t know what I would do if it isn’t in my favour and the operation is cancelled. I still have to go to St Andrews for more testing and needles (angiogram & m.r.i.) but I’m nearly there. Tomorrow with a bit of luck at this time my operation will be all over and this will all be history. One can only hope.
YES YES YES YES
I’m now in the hospital bed all admitted and feeling so relieved at last that the operation has been confirmed. I’m actually in the maternity ward due to a shortage of beds. It sounds funny with all the little cries – it’s been a while since I’ve heard them.
Mum, Dad & Emma have gone home for the night but they will be back in the morning. I’ve asked that they don’t come in before the operation and see me as it would be too teary and I’m to go in at about 7.30 am tomorrow morning. I’ve spent a few hours with Hayden he is also relieved but very nervous about it all. I’m actually excited and feeling really positive. We had lots of laughs about different things and also shed lots of tears. He is so very grateful it is really overwhelming. All I want at the end of this is for him to have his health as without that you have nothing in life really. Grant and the kids have rung, they’re all good, I’ve really missed them all. Pughie and Di have also rung to wish me luck. And of course Kate and Rob have as well. The support I have been given is just amazing even from people I hardly know. At last it is going to happen, I won’t be feeling so excited tomorrow night but I’ll be fine.
Well I’m now waiting for the nurse to come and pick me up and take me to theatre. I’m still excited. I slept really well last night and feel good & positive it will all be over soon.
I hope Hayden is feeling a little less nervous, they have asked me if I’d like to go and see him before I’m taken to theatre. I’m not going to, it’s better if I just go. I think it would make him more nervous really. Mum, Dad and Emma will be with him soon. Toni the liaison nurse has been in this morning to see how I’m feeling, she is so nice and does a great job with every thing concerning the operation.
Here I am! I’m sore and very tender but the painkillers are doing a good job. Dad, Mum, Emma, Becky and Marg have been with me off and on since coming out of recovery. I don’t really remember too much but I feel good about it all. I haven’t seen Hayden yet but have been given lots of messages from him. He is doing really well, he came out of the operation feeling better and looking better already. That’s amazing as I feel like I’ve been hit by a truck! I’m very slow moving and tender, I would have liked to have seen Hayden yesterday but just couldn’t get out of bed. Just trying to get to the toilet was a big thing, let alone down to his room. (It would have been nice to have the catheter a bit longer but they removed that yesterday in high dependency along with the drain that was in my side near my hip.) I’ve had a lot of calls from family and friends but couldn’t take them. Grant and the kids rang this morning, it was good talking to them. I remember the nurses in high dependency telling me that they had rung several times after the operation, it felt like I was drifting in and out. Mum has rung them lots to keep them informed of every thing and how I was going. I think they feel better now that they have spoken to me.
I’m waiting at the moment for someone to come and pick me up in the wheelchair to see Hayden as there’s no way I could walk that far on my own. Like I said, getting to the toilet/bathroom is like winning a marathon though I must admit I’m in a ward with a 5 other ladies. No joke, I must be the youngest by 60 years (I’m 27). They all seem nice and their families are in and out all the time so I’m actually feeling like I’m doing really well as I can get out of bed even if it does take a while and a bit of sweating.
Well I’ve just returned from being with Hayden and he looks great. I’ve spent the best part of the day with him, we had lots of laughs and it is just amazing how well he looks. He said he feels good. The doctors said their trying to slow the kidney down as it is working flat out and producing 24 litres of urine in 24 hours so they are busy keeping the fluid up to him. Up until this point he has been on a restricted amount of fluid per day but now he can’t drink enough.
Emma ended up having to come and get me this morning in a wheel chair as the nursing staff are so busy and I really wanted to be with Hayden. I felt so isolated up here not being able to see him or at least be near him. I’ve had visitors today from home (where I was brought up in Coober Pedy), some of them I haven’t seen for about 8 years so it was nice seeing them again. I even made it outside (in the wheel chair) and it was nice to have some fresh air at last. When any one goes to see Hayden they have to put gloves and a gown on due to infection. I’m now really uncomfortable and want to sleep, I feel exhausted.
Doctor came in this morning and said I can go back to the unit. I don’t really feel that I’m ready to go yet but they know best, I hope. I’m going to see Hayden in a minute when the wheel chair arrives.
I’m now back at the unit but Hayden isn’t doing very well at all. Now he’s starting to reject. He’s upset and worried but I still believe it will be fine, it’s just another hick up – hey we’re used to them. I don’t think it helps me being around at the moment as I’m still finding it very hard to move around and it’s a reminder to him of what I did and he doesn’t need that. He has to concentrate now on him and not worry about me, he has to stay positive, he really needs Emma not me. I won’t go in to the hospital tomorrow, they now think that the kidney has been damaged by up to 20% and he is really upset and angry. I’ve had lots of phone calls from home today.
We all went to Emma’s parents for tea tonight. I don’t have much of an appetite, as I feel really bloated all the time. I have these pains under my shoulders which the doctor said it is the gas that they use during the operation lodging in there. I still look as if I’m pregnant, really bloated (swelling and so on from the operation – thank god for track pants and big jumpers) but the swelling in my face has gone down. It does hurt or ache a lot under my shoulders, they’ve said it will pass soon in a few days.
I’ve spent the day at the unit today with Dad in the morning while Mum was at the hospital and vice versa in the afternoon as Mum and Dad wanted to go in and see Hayden. I didn’t go in today to see him. I wanted to but he doesn’t need me in there. They still aren’t sure about the rejection and I’m still not moving well and at times am uncomfortable. I’m now only taking panadeine forte and I’m feeling much stronger today although I got out of bed the wrong way this morning and felt like I was going to faint. I should have just asked for help, ah that would be to easy for me. My shoulders aren’t as sore as they were but I’m still really bloated (only looking 8 months pregnant now not 10).
I feel stronger and better today, still tender but it’s easier to move around. Bit by bit I’ll get there. I went and spent time with Hayden today. He is feeling a bit better and it looks like there’s no damage to the kidney and they now have the rejection sorted out. Apparently you should expect rejection in some form big or small. It’s looking good again. Emma is a real hero in all this, her support to Hayden is fantastic and she stays positive even when she’s not really feeling that way herself. Hayden looks to her for that at times and gets great comfort from it. I’m not so bloated today and my shoulders aren’t as sore either, looking only about 6 months pregnant now.
I feel really good today, stronger and not as tender. I’m still taking panadeine forte. I went and saw the doctor today at Queen Elizabeth. Mr Rao the surgeon was happy with every thing and removed one stitch that was really annoying me where the drain was, just beside my hip, and said all the other stitches should dissolve. I even went shopping today with Mum and Dad. It wasn’t too much but I was feeling good and I think the more I move the better. The doctor also said today I can fly home to Perth on 25/11/99. I’m really missing home. We also went out for tea tonight which was nice.
I feel even stronger again today! It’s great! I’m still taking panadeine forte but feeling heaps better. I’m moving better and quicker today as well which has been nice. I went and saw Hayden this morning. He looks good and is doing well but is taking heaps of anti rejection tablets. They have said that in time that will reduce. It’s really nice seeing him look better. He is still on pain killers and still has a catheter but he is moving around now and can even go outside for some fresh air. His appetite is good also. I’m still bloated though it’s not as bad and haven’t really got a good appetite but that won’t hurt me. Hayden is really thin so he should start to put on weight now. I had lunch today with an old school friend at the unit. It was good to catch up as it has been a long time, nearly ten years. Bindi & I have kept in touch over the years. We spent a lot of time as kids together and her home was always my second home. We laughed lots about the old times and growing up where we did. Her parents and her brother have been wonderful support to Hayden and Emma through all this. It’s been nice seeing them all. Time passes too quickly, we also went for a drive through the Adelaide hills today. I thought I would be uncomfortable but I wasn’t and it really was nice to get out.
I’m flying home today! I’m a bit worried about the flight from Adelaide to Perth but I’ll be fine. Mum’s coming home with me to help for 6-8 weeks. They have suggested that I will need the help and I’m sure I will. I’m really lucky. I don’t want to say goodbye to Hayden or Dad and Emma, I don’t know how I will go at all. Can’t wait to see the kids and Grant. I’m feeling stronger and better every day now. I’m not so bloated and now wouldn’t be mistaken for being pregnant! I’m still very tender around the wound itself and my shoulder’s aren’t as bad so all in all I’m on the mend well and truly. Now I really don’t want to say good bye.
I’m home! The trip wasn’t too bad, a bit uncomfortable but hey I’m fine. It was great seeing Grant and kids and they looked relieved. Saying goodbye was worse than I had thought it would be, really hard. Dad is staying on in Adelaide for a while with Hayden and Emma. It has made it harder all living so far apart, but been nice all being together again. I’m really tired today, just want to sleep. I think travelling really made me tired and after we left the airport in Perth the car trip home took about 1.5 hours. It was really painful and rough roads didn’t help at all but I’m here and fine. I’m not as bloated today and my shoulders are heaps better but the wound is really tender again. Breanna made me laugh yesterday, after seeing me all she wanted to do was see the cut as she described it. She couldn’t wait, once she had seen it she wasn’t at all concerned. I’m glad Mum’s here, I couldn’t have done it on my own. All I did all day was sleep.
Today I felt better and not so tired at all. I even managed to work in the office doing invoicing. I’m lucky the office is at home so I did a bit and then had a sleep and repeated it again.
Mum’s been doing all the household chores and helping the kids. We spoke to Hayden today. He is still doing well and feels great. He keeps thanking me for my kidney, it has been so worth while. I would do it all again tomorrow just to see him well, it is all I ever wanted out of this for him to have his health and live the life he wants and so much loves. Without the transplant he would have to live in Adelaide for ages, years even on dialysis before he could return back to the station. One of Hayden’s fears was rejection but in my eyes it was worth a shot whichever way it went. It is still early days for him but I do believe it will be fine.
Only time will tell now.
I feel great so strong now. I’ve had blood taken today at my doctor’s here in town to check my creatin levels. My blood pressure was great and all seems good. Hayden is well and out of hospital. He now goes in daily for blood test and in time he’ll only have to go every second day and then weekly. When he gets to weekly visits he and Emma will go back to the station and live. Hayden will fly down each week to clinic for however long it takes. I’m so happy for him, he sounds so good on the phone
All my test results are back and really good. I’m really feeling good now it’s been four weeks since the transplant. I still get tired a bit and Mum is still with me helping but I’m doing really well. I’m going to start walking next month to get my fitness level up again, I won’t be doing any sit ups though. My stomach around the scar is still tender, not painful just tender, especially if it is bumped but it is getting better every day.
New year, new me! Well I went for a walk today, bit early though. I now think I will leave it a few more weeks before I try again. I am really doing well now.
I went into RPH today to see Dr Thomas and have some tests done. Everything is good as expected. I went down to the blood room to have blood taken for different tests and my blood pressure is good. Dr Thomas said that if the results of my test were good I might not have to come back for 12 months. Wow! I feel really good and almost back to how I felt before. I spoke to him about starting to exercise again, he thought it would be fine as long as I felt good and took it easy to start with. Mum has now gone and I’m coping really well on my own. I’m not bloated at all now and am only tender if hit or bumped in that area around where the scar is. Hayden is doing well, he is now only at clinic every second day and looks like he’ll be home in no time. I’m really happy for him.
Well it’s now been 9 months since the transplant and I’m great. I’m running 5 days a week, I feel 100 %, and I’m back doing all that I did before and a bit more. Hayden is back working full time as head stockman and only said the other day he can’t remember feeling this good. That is all the thanks I ever wanted just to hear that. It has been a long road for him and he has had a lot of setbacks over the time but is doing really well now. He flies down to clinic every three weeks now and couldn’t be happier. I wouldn’t change a thing about being a donor and would do it all over again, it’s been really worth while. The thing that really surprised me through all this was people’s comments. Some were great but some were just stupid. Here’s a few that stand out the most:
“I hope he looks after your kidney.”
My response was that it was mine while it was functioning within my body and once it was transplanted it became his and his only. “Hope you’ve been left the family home and all for what you are doing.” My response was that I’m doing it because I want to. There is no price on it, it comes down to just wanting to help. Believe it or not, there are lots more like these. It is an experience I have had the privilege of going through. The title for my journal came from how I felt at the time and still feel today about it all.
I must point out that that these are my feelings and views only. I kept a rough journal as I went though and by putting this all together I hope that it can help in some way. When I went into this I thought it would be very straightforward, I’d have a tissue test and that would be it. How wrong was I! As I have said, the tissue test result was the first metre ran in a 100 metre race. It was a race that I had planned to win from day one but it took time. We both won the race and to see and hear Hayden today makes it so very rewarding for me and for him. He now has his health back.
And is doing what he likes best.
TO REMEMBER ME
One mans thoughts as death approached:
The day will come when my body will lay upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.
In time two doctors will determine that my brain has ceased to function and that for all intents and purposes my life has ended.
When that happens do not attempt to instill artificial life into my body by use of a machine.
And don’t call this my death bed – let it be called the bed of life and let my body be taken from it to help others lead fuller lives.
Give my sight to a man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
Give my heart to a person whose own heart has caused them nothing but day’s of endless pain
Give my blood to the teenager who has been pulled from the wreckage of his car so that he might live to see his grand children play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones every muscle & every fibre and nerve in my body and find a way to make a crippled child walk.
Explore every corner of my brain, take my cells if necessary and let them grow so that some day a speechless boy will shout at the crack of a bat and a deaf girl will hear rain on her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something let it be my faults, my weaknesses and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to god.
If by chance you want to remember me do it with a kind deed or a word to someone who needs you.
If you do all I have asked I will live forever.