Next step

I have been to the dr again on 3 Dec 2008. I am still waiting for my authority to go to Pretoria Academic Kidney unit for my preparations.
The dr yesterday said that I am first on the list to go, but military members only have one bed at Pretoria Academic in the Kidney unit. At the moment there is another lady who occupy the bed. So I am still waiting.
My creatinine fell to 30, so it is going down very fast.
I am very nervous, I try not to show it to everybody, the people around me have enough to worry about than to listen to my problems so I am trying to cope on my own. I manage but sometimes it is very difficult. If I listen to other peoples' issues then mine seem so small and insignificant.
I am not going on leave in December so it is work for me. It will be not so busy during the festive season so I can work on outstanding tasks that need to be finished.
My brother is leaving for Mosambique on 17 Dec 08 to start his business there, his family will follow later in the year. I hope it goes well. He seem very busy and trying to get everything done before he must leave.
My sister and her family are still waiting for authority to transfer to Potchefstroom, they want to be there before the schools start in the new year. I hope their stuff get finalized now, they are also very on the edge because nothing can get to a point.
I will "see" you soon, must go to work now.

I think I must clear something up. I think that I was maybe misunderstood when I said that it look like my sister is not showing any interest.
Since I started with all this problems my sister has been there for me, she were the one looking after me by telling me where to go to the dr, when to go to the dr. If I had any pains, problems or were just down I ran to her and she were there for me.
When I said that she did not show any interest, she read the piece where I said that she does not show interest and were very unhappy about, what she thought I said she did not show interest.
I love my sister very much and she has always been there for me and for that I will always be grateful.

I am doing well. My mind is just very busy on what will happen? will I get a kidney? when will they start with what. I am still waiting for my authority to come through, so the suspense are keeping me busy. Because of this I don't sleep to well and are up and going very early in the mornings.

I had a wonderful time with my brother and his family for 5 days. It was very nice to be with them and relax. Barry and myself went out for supper on Tuesday night, just the two of us, and we talked a lot about everything, something we could not do with everybody in the house. It felt so good. I love him to bits.

My sister and her family went on a sea holiday that same week when I was in Nelspruit with Barry and his family. They are back now, all with beautiful tans and well rested. I went to visit them on Sunday. It was good, Gerna and myself talked a lot and sorted out stuff. I also love her a lot.

I need to go, work, work, work. It keep me busy. Will keep you posted.

Good day everybody. It's been a while since I last "spoke"to you. Today I went to the dr again to see if anything changed with my kidney functions.
Guess what it changed and changed a lot. According to the doctor I must start with my preparations for dialysis. And that is not good news to me. In the back of my head I had the hope that everything will change, that my functions will stay the same if not go better. I know it could not happen it is just .......... a hope.

I am in a daze, I cry for nothing, I just space out and hear nothing around me, and we are a lot of people staying in the house, there is no space to space out but guess what I do that.

My brother is a darling, he phoned me this morning to wish me good luck, I love him to bits. My sister I also love she has always been there for me during all my "medical problems". The last few weeks it is as if she distance herself from me. Like today I told her I must go to the kidney unit to be prepared for dialysis and the only reaction I got was "o". I don't know if she is distancing herself from my because of my mother and what she went through and that she is scared to be to connected. I hope not because I need her to be there to be connected to me. I love her and would love her to be part of what I am going through, all the emotions.

I must go to work tomorrow, it is only Thursday tomorrow, but I am to drained to go there. My job is of such a nature that I can not be emotional in front of my subordinates I am supposed to be the stron one, so I will only go on Friday.

Barry want me to visit them this weekend till next week Tuesday or Wednesday, I look so much forward to that. Gerna and her family are on there way for a seaside holiday in Kwazulu Natal. The kids look so much forward to that, I hope they enjoy it

My friends and work collegues are so good and supportive to me, it only make me cry when I receive an text message wishing me well.

My mother, Thelma

Last night I heard that there were a misunderstanding on the farm buying by my sister and her husband. I don't know if I must feel guilty for being relieved, but I am.

Today I want to tell you about my mother. She was born in 22 Nov 1935 in then Rhodesia (now Zimbabwe), my grandmother died when my mother was still young, the doctors then said she died of kidney stress (my mother later suspect that it was PKD). My mother had 2 brothers, who stayed Zimbabwe (both with PDK) and a sister, also staying in Zimbabwe (also with PKD, she also had the cysts on her liver) another sister, from Mosselbay, who does not have PKD, and then my mother (with PKD). All of them died a few years ago accept my aunt in Mosselbay.

My mother went onto dialysis, 26 years ago, at the then HF Verwoerd Hosp (now Pretoria Academic Hosp)as a military patient. They are one big family there. She had her transplant 24 years ago while my sister were in her last school year and during her matric farewell. The one photo show me and my sister with my mother in hospital on the night of my sisters farewell.

She also had Osteoporosis and could not walk properly the last few years. She had a form of skin cancer that, every now and then, had to be removed surgically. She were terrified of anaesthesia so she will always go with only local. After her transplant she had to go for follow-ups every three months at Pretoria Academic Hospital with Prof Carosite and his team. She had a fistula in her right arm (her grandchildren said it was her engine because of the vibration). We were at the hosp at 6 in the mornings, of her visit, just to be seen early so that I could go back to work. It was a mission with the wheelchair and everything going there, but I did not mind. It was only every three months. She was so nerves every night before her visit, thinking of all the things that could happen during her follow-up. After the visit we will have breakfast (round about 8:30) in the restaurant then I take her back home. This is a routine that I miss every now and then with her, just the being together.

She was a big introvert. Because of the big liver, her stomach was very big and swollen and she felt very shy about that. I had to beg her every now and then just to go with me somewhere just to get her out of the house. She did not want to be and inconvenience to anybody so she rather stay at home (she said I must struggle with the wheelchair when we go). She sometimes went with me to visit our friends Petro and Gerrie. She and my sister stayed with them during her dialysis period and my sister went to school. My father and brother still stayed in the then South West Africa (Namibia)for my brother to finish his school. They came to SA after his last exam.

My mother died 22 October 2005 a month before her 70th birthday, she suffered a lot and I know that she is much happier were she is at the moment with no pain and no problems. Her kidney she called "Soekie" and Soekie had her 22nd birthday in Sept 2005.

My mother also had the cysts on her liver. Her liver was so big and made her very uncomfortable but the function was very good.

My world gave way today. Last night my good friends Petro and her family said they are moving to the Western Cape (Piketberg) to work there. I am very happy for them because they had a big struggle and it seem that their luck are changing. I am going to miss them.
Then I phoned my sister Gerna today and she said to me that they think of buying a farm in the Northern Cape, it is not finalized, but it is a big possibility. I am also happy for them they have been looking for a farm for a very long time.
My brother Barry are immigrating to Mozambique in December 2008, this is something that has been coming for nearly a year. I am happy for them they love Mozambique and want to stay there.
I am very happy for all of them, they deserve all the goodness that come their way. It's Blessings from God.
Maybe I am just feeling sorry for myself at this moment. I will not have any family or close friends here to support me when I start with my dialysis. I am sure I will make it, I know I will make it, I have God on my side and He will carry me through this. But I will not have somebody to give me a hug when I am down and when it is getting to much for me.
I have a lot of offers to go with them and stay with them, move with them to where ever they are going, but I can not move now, I was just placed in a promotional post and was just promoted in August so I will not be transferred now. All the main military medical facilities are here in Pretoria, I can not travel here every now and then for my medical appointments.
I am depressed, give me a day or two to work through this. I AM A SURVIVOR I WILL GET THROUGH THIS.

I started working again on Monday, it was hard to be back after 3 week holiday and because of the change that happened in my life.
I struggled a lot the first three days, my feet were swelling and it was so painful. We had a workshop and I sat a lot. At night I had to lie down and elevate my feet to relieve the pain and swelling. Today is better.
I went for a blood sample today to see if my values are still ok after I started taking my Lasix, the results will be in this afternoon. Keep your fingers cross. My sister, Gerna, draw my blood at the sickbay, she is good!!!!. I asked her if she think I must put the fistula in my left of right arm (I am right handed) she said to me "No negative thinking, it will not be necessary for a fistula, your blood results will be good". I felt like crying, this is the first time that she showed any interest in what is happening to me. I am happy.
The other big thing for me is the fact that I can only drink two liter fluids per day. Thank you for crushed ice, I call it my miracle crystals, that helped a lot.
Emotionally I am better, I think that I will be able to go through this with the Help of our Heavenly Father, with Him nothing is impossible.

First of all thank you to "da grandma" for visiting my blog, I will take your advise and just go one day at a time. It will not be easy because there are a lot of issues that can happen in the future, like my work, and I need to know what I am going to do. But I will try my hardest to take it slow. I hope that you are ok, will keep in touch.
Also thanks to my friend Bev, you don't know what it mean to me to know that I still have a friend out there that cares, Thank you pal.

Today was good, maybe I am already taking it one day at a time.

Luv u all.

Remember the fistula and needles I talked about, this is what is looks like, it more scary than it is. My mother had a fistula and it make a buzz sound, we use to joke with her with her "machine".

Today was a cold and windy day, it looked like rain. I stayed in bed till late in the morning while watching Olympic Games. I enjoyed that.

My new medication does not seem to work too well. I keep on having this pulsating headaches, I hope it is only the transformation period, it is only 3 days since I started taking them.

My mood is better today I feel that I can face stuff. The 2 liter fluids a day is hard, I keep on feeling I need more. I drink about 2 liters water at night, so it is difficult but manageable.

Holiday is nice, I know there is a lot to do at work but I will get to it next week at the moment I want to focus on what I must do, and work is one of them.

To all the good wishes I received thank you very much. Thank you also for the lot of prayers that comes my way.

I had a wonderful day today. I am in my last week of a three week holiday. Today was a bit cold and windy but I felt good. I just didn't go there today. As soon as I started thinking about "it"I did something else, and it worked.

This evening I had a nice workout for the first time in four days and it felt good. I don't feel the "dead" feeling so much anymore. It is gooooooood.

I had some pain over my liver area (o ya I forgot to tell, the same stuff I have on my kidneys I also have on my liver, but my liver function is very good, my liver is just bigger as a normal one)

Today is a short day, it was Sunday and we just chilled.

I went to dinner with my sister, Gerna and her family, Len (her husband), Christian (10) and Xander (8) her boys. It was very nice, I had to keep my pose, laugh and be happy. I think it did me good for a while I didn't think of the issues at hand. We laughed and joked during the evening.

When I went to bed I started thinking again, strange how your mind take it's own course, you can't stop it. At 03:20 am I was still awake and tossing and turning, I listened to music on my MP3. I did not take my book with me, it was just for one night. I went to sleep at 3:30 and woke up at 8:00.

Before I left for home I helped Christian with a school project, it was nice I enjoyed that.

Today we are having a "braai". Some friends are coming over, looking forward to that.

I looked for some pictures on the internet and I found this picture of a kidney with the same cysts on as mine. I don't know at what stage this is but it doesn't look good

After I went to the dr on 13 Aug 08 (Wednesday) a lot of feelings and emotions went through my mind.

I stay with very good friends of mine, Petro and Gerrie Munnik. We've been friends for the past 28 years. Petro and my mother use to work together in Grootfontein, Namibia. When my parents move to South Africa in 1985 my mother stayed with Petro and Gerrie because my father was still in Namibia doing border duty. During this period they helped my mother when she started with her dialysis and all her stages she went through.

My father died in Jan 1992 and my mother died in October 2005. I am now staying with them. We are a big family staying together, it is Petro and Gerrie, with Maretha (30,their oldest daughter), her husband Frikkie and two boys, Christo (5) and Ruben (3) also here is Tania (29, youngest daughter) and Gerhard (21, there son and my godson)

The last two days were very hard for me, I have this "dead" feeling inside me, a lot of questions I want to have answered. But it is questions that only I can answer. Questions that I must answer on my life what am I now going to do, how is this going to impact on my work (I just started a new post and promotion and love it) must I go off on medical (my mother did when she got her transplant) what will I then do.

The thing that bother me the least is dying, my relationship with my Heavenly Father is very good and I am not scared to go to Him, what worry me is going through everything to get to that stage. I know that He will guide me and carry me but I am only human and I am scared.

When my father died in 1992 I started looking after my mother. My sister got married just after my fathers death and moved to Nelspruit, my brother was already married and were on there way to Nelspruit. So the only one left in Pretoria was me and I was not married, so I moved in with her and looked after her. She later-on could not walk and need to go by wheelchair everywhere (I had to buy a car where a wheelchair could fit in)

So I went through all this with my mother, her visits to the dr and her pains she had, the problems she had, and it scare me. Am I strong enough for this, everybody say that I am, but at this stage do I want to be strong, why must I be strong can I not be scared.

My biggest issue is going to bed at night alone and be with my thoughts and scare alone. (now it bother me to be a freemale)

My sister is a nursing sister, and a very good one, when I told her about the results, we had come soda(o ja that is another thing, I am only allowed 2 liter fluids per day, I usually drink that much during the night so another change I must do). My brother were in Pretoria on Wednesday 13 Aug 08 (from Nelspruit) to pick up stock. When I came from the dr he phoned and he asked were I am and I said from the dr. He asked me what did the dr say and I told him, he said "O, that is a pity but you are strong and will get through it", can he phone me back. Well it is two days later and still nothing from him.

I understand they have their own families to worry about and don't need my worries also to cope with so ja, I will work through this one. Luckily for me I have wonderful friends in the Munniks and they were here for me the past two days.

Tonight I'm going to have lunch with my sister and her family, I must just try to get past this dead empty feeling in me. I just want to be on my own to think a bit and for once feel sorry for myself, am I allowed this? to feel sorry for myself. I looked after my mother for nearly 17 years and I think I am entitled to it for a while.

Bie's thoughts

My name is Bie. I am single female and 43 years of age. Nothing "wrong" with me, I am just a "freemale"

My reason for doing this blog is because I want to tell you my story and my thought after a big change in my life.

It all started in 1986, I was then 21 years of age. My mother who was diagnosed with the incurable Polycistic Kidney Disease (PKD) had to undergo a kidney transplant. At that stage she already went through about 2 years of dialyses at then HF Verwoerd Hospital. She was a military patient but the military hospital did not have a kidney department so she was referred by the military, to the best kidney specialist, then Dr Carosite (I'm not sure of the spelling of his name) now Prof Carosite. I decided to go for tests to see if I am compatible to my mother, and donate a kidney. Big was my surprise when they said to me "You are compatible but you can not donate". Yes I had the same PKD as my mother. Mine were not that advanced yet but I had PKD.

At that stage it did not bother me much because I was not sick, I could still play Basketball for the SADF, I was still active.

About a year later I started having bad headaches and a lot of swelling in my ankles. I went to the dr and they said that because of my kidneys I have high blood pressure and the swelling is because of my kidneys that do not output the enough fluids. I was placed on medication for my blood pressure and to help with my urine output.

Along the years everything just went downstream, my high blood pressure medication was increased and still had to take the urine pill. This did not hold me back I was then a Sport Officer in the SADF and later the SANDF and still active in sport like netball, cycling, badminton and basketball. At this stage my "expiring date" (age) came closer, I could not do the things I was use to. But I was still active in badminton and cycling, but went more into sport administration.

About a year ago I was diagnosed with TB. My got sick and the dr could not find the problem. The dr's did some test because they thought that I got the TB in my kidneys, lucky not, only in my lungs.

In February 2008 I end up with Dr Ledwaba at 1 Mil Hosp Internal Medicine, she is a kidney specialist. She said my kidneys were not good. My creatinine at 58ml/min is still well above the cut of count for dialysis, if it go to 25 they must start thinking of dialysis for my.

She gave me the following instructions:
*Every 3 months I must do blood and urine test at a sickbay.
*A week before my 6 months visit to her I must do a 24 hour urine collection, sent it to the lab for the results to be ready when I see her on 13 August 2008.

Well I did all she said. On 13 August 2008 I went to see her. Big was my shock to see how my kidneys deteriorate in this 6 months. In 6 months time my count went down from 58ml/min to 39ml/min. My first thought was, if I had to come back in 6 months time will I still be alive. If my count went down by 20 ml in 6 months after another 6 months it will be round about 10ml/min and that is to low.

Dr Ledwaba was also surprised to see my count going down with 20 and immediately she said I must rather come back in 2 months time. So my next appointment with her is on 15 October 2008. If at my 15 Oct 08 appointment my count is still lower they need to prepare me for dialysis by putting in a "fistula" (it is when they connect a artery and vain to have a better blood flow were they can put in needles)

And this is were I am today. My story and my thoughts will start here, I hope you will find this thoughts of mine interesting, (not pity please just support)and feel free to participate in this with me.

Bie
(15 August 2008)