Bie's PKD thoughts

Again........!!!!!!! then the good news.

2010-03-07T15:53:00.003+01:00

Hallo everybody, it's me again. I only talk to you every now and then but to me it is better to write one long letter than write everyday a little.

The last time I talked to you I was very down and did not know what is happening at Steve Beko hosp. Well I have news. But this news do not come without a story, again.......!

I was called by Sr Patricia from the kidney unit at Steve Beko hosp informing me that I need to come in again, for admittion. The dr's want to see me and finish the last test. I was admitted to the kidney unit on 23 Nov 2009 to finish up my last outstanding tests. Or so I thought. It will only be about a week then I am out of there with my report for 1 Mil hosp.

On Monday 23 Nov 2009 I went to the hosp with my car (Petro or Gerhard would collect my car during the day)I was in the ward at 6:30 to get the necessary papers to be admitted at admissions. I went through admission very quicly, not the usual long queue.
In the ward they started me on my first 24 hours urine collection (the previous course of collection was to long ago and they need to do it again) so for the next 3 days that is what I did in the hosp. Doing my business in a bottle.
After the three days I was just there waiting for the results. On the Friday I went on weekend pass and had to be back the next week. The Sunday I went in again for the next week. By now I was not happy because it is now for the second week and the first week I only did the bottle thingy. The next week they did sonars (which they already did previously) but there were new dr's and they want to see a new sonar. So I went for the sonar.
During this week I started with a sharp pain in my right side. The dr's said that I am bleeding into one of my cycts and that is what cause the pain.
The Friday I went on weekend pass again. Sunday I was back again for the third week, "to do the rest of the outstanding tests" On Wednesday I went for the test to see if there is any problems with my bladder (if I go for a transplant that my bladder would not be a problem) there were no problem. The dr's send me for another sonar to make sure that the bleeding into my cycts are not bad, I still had the pain in my side. No problems. On Friday 11 Dec 2009 I was discharged, all my tests done. I had to come back for the Professor's panel on Friday 15 Jan 2010.

On Friday 15 Jan 2010 I went to see Prof Potgieter with his panel. HE HAD GOOD NEWS FOR ME. According to all the test I don't need a transplant or dialysis at the moment. The Prof said that I can still go on with my kidneys as they are at the moment, I just need to stick to my diet, drink a lot of water and no bundgie jumping, then I will be fine.
Is'nt that good news, I was estatic, over the moon. The sr said I must just wait for the report and then I can go.
After a good hour or two I told the sr I would be back for the report in next week. I had to go to Gerna and her family in Potchefstroom for the weekend, we had something to celebrate.
The next week Tuesday when I phoned the report was not ready and I had to wait, they will phone me as soon if it is ready. After two weeks I did not phone again and decided that I am now tired of waiting and phoning to them. The calls came three weeks after my panel discussion. I went to fetch the report. And you won't belief. It is a small piece of paper (not even A4) saying the following to my dr at 1 Mil Hosp.
"Pt with Stage 3CKD. adult polycystic kidney disease.
this confirms that the above mentioned was worked up at our renal unit. she has stage 3 CKD, her urinating cysogram and cystoscopy + pylogram were normal. She has been advised to remain on her chronic meds and also to drink a lot of water for her polycystic kidney disease. She is not for dialysis at present".
That is it after a year being in and out of the hosp, disrupting life and those around me (I had to ask somebody everytime to take me to hosp and collect either my car or myself again)and that is all they have to say. What kind of report is that. "drink a lot of water!!!!!!" O sorry they indicated that I am stage 3, whow what an achievement that is what they found all this time????!!!!!.......
I am not happy.
On 15 Apr 2010 I must see dr Ledwaba at 1 Mil hosp again, to take her the small piece of paper. it is laughable isn't is.
Thats enough about me, I am ok and going strong. God is so good to put my kidneys "on hold" for a while so that I can takle other issues that need my attention now, more important stuff than me. All this time everybody was fussing over me and now there are other more important stuff to do.
Love you sis.

Update for past 7 months

2009-11-27T21:05:00.002+01:00

So much happened the past 7 months. I was first admitted to Steve Beko Academic Hosp (SBAH) in March 09, after that I was there 3 more times for "work-up".

The beginning of May 09 I was admitted for two test, one of them going to theatre for a test. The other is a test with catheters etc. I was admitted on the Monday for the catheter test and when I was already on the bed and preped for the test the dr said he is not going to do the test now it is too late and he is not doing it. That was only 14:00. Needless to say that I was furious so furious that I started to cry and then I get more upset because I don't like to cry infront of people and therefor cried more ....... and ... repeating the circle. I eventually calm down and prepared myself for theatre the next day, going nil per mouth from 22:00 because I am going in at about 09:00. 10:00 came 12:00 came and at 14:00 the dr came to me to tell me that the theatre is full and they will not be able to take me, my theatre must be rescheduled. That was it I had a trully tantrum and did not want to talk to anybody. At that stage a Social Worker came to me telling me that I must calm down. I must "correct my relationship with my God" then I will be able to handle issues like this better. Have you ever seen petrol into fire? I went of like a cheap cracker and told her not to talk to me, I do not want to talk to her, my "relationship with my God" is exellent and there is nothing wrong. She do not know me so don't speak to me. She left and I went home.

Beginning of June 09 I was admitted again to SBAH, ward 4.6, Nephrology for the theatre test that was cancelled in May 09. I went to theatre and after that went home. And that was the last that I heard from the ward.

I followed up with the ward sister on my report that the dr must compile that must go to 1 Mil Hosp (dr Ledwaba). Twice a week I phoned just to get the same answer "The file is on the counter and the dr did not get to sit and get all the tests from the system and to compile a report for 1 Mil Hosp.

In October 2009 myself and 3 friends went on a 4 week holiday to Mosambique swimming with the dolphines and just doing everything and anything we want to do. On my return I phoned the ward again and again got the same answer. It has been nearly 6 months that I last saw any dr and I was beginning to panic, so I phoned dr Ledwaba at 1 Mil Hosp. She was under the impression that I was still under the treatment of SBAH so she requested all the bloods and urine necessary and I went to see her. (Hey do I miss my sister here in Pretoria, she is always the calm one and telling me do this and do that) Gerna is now in Potchefstroom and she still provided me with advice. Thanks Sis, I love you.

When I got to dr Ledwaba she was not happy to see me, she said she meant that I must get the tests and phone her for results. She phoned ward 4.6 and spoke to Sr Nthlatleng asking her to keep in touch with the patients from 1 Mil Hosp even if it is only to tell them that everything is still ok and not to leave them hanging. Apparantly it happen a lot with the military patients.

And what happened on Friday 20 Nov 09 (would have been mom's birthday) a sister from ward 4.6 phoned and tell me to be admitted again on Monday for the outstanding tests and for Prof Potgieter to see me and deside what now.

On Monday I was there and all went well. I started with my 3 bottles of 24 hour creatinine clearance. The first one in May 09 was 38, and the first one on Monday went down to 33. But the third one went totally down to 23.6. I caught a fright but the third one was not so bad (says the dr, I don't know the reading) but I am still in Stage 3. I started on Wednesday (still in hosp) with pain on my right side over my kidney area. The pain was bad and the Prof says he think I am bleeding in one of my cysts. Now I must be back on Sonday 29 Nov 09 for scans and sonars next week. I also had to see the social worker and guess what who walk in the same one who gave me the "talk"the last time. And what did she do today after I waited for her for 2 days to see me. She sat down to do the report with me, she asked me a question and while I am explaining to her she fell asleep. She woke up and said she is going now because she is tired she will see me next week when I am back in hosp. And she left. How bizarre is that.

The people in my office I think is not so happy with me because not one of them phoned me the hole week. I think it will be even worst because I will not be at work on Monday. i let them know but I did not get an answer back.

I had a lot of support from my friends in Pretoria this past week. They kept on phoning asking and supporting me. They are Anette Burger, Beverly Roos and Riana van der Westhuizen.

But very special thank you to my best friend Linda du Preez, you are a true friend and I know if I don't hear from you and I get an sms it is because you don't know what to say and I understand.

My darling sister who have her own issues (she was diagnosed with breast cancer 5 weeks ago and must go for mastektomy (breast removal) and chemo)for always being there and talking to me.

My other sister (sister in law) Corne you are also a great support for me and I want to say thank you for being there and that I could know if I call you will be there. I am going to miss you if you go to Mosambique permanently. Then my brother, Barry, the one who do not say much but is always there for me, thank you. You are already in Mosambique but I got sms's from you regularly Thank you.

And then my God who is always there with me, carrying me and showing me the correct way to go. All the Glory to Him.

I am in my own bed tonight and I love it. I will try and keep up to date with what happens.

See u soon.

Start of tests

2009-04-03T11:56:00.003+02:00

The weekend of 20 to 23 March 2009 I visit Gerna and her family on the farm near Potchefstroom. No cell reception there. Sunday 22 March 09 I left for Pretoria round about 15:00. On my way all the calls came through on my cell. One of them from Pretoria Academic Hospital telling me that I must report to ward 4.6 (Nephrology ward) on Monday 23 March 09 at 07:00. I paniced, I waited so long for this call and now it is here and what now.
On Monday I booked in for the start of my work-up for dialyses. I saw the dr that morning and they started with all the tests. Stabbing me with needles, measuring urine, eating jukky special diet food, and more measuring of urine. Then I must go for this, then for this then blood for this and that. On Friday 27th I was sent on weekend pass and had to be back at Monday 30th. Prof Potgieter and all his students with my 3 dr all did rounds on Monday with a special guest dr from Miami. There language is to high for me to understand everything but I did catch a phrase or two. What I did understand is that my situation was neglected by the dr's that was suppose to look after me the past 18 years did not do a good job and that is why I am in phase 3 of kidney failure. In my environment with medical health you see the dr you get, there is no permanent dr that you can say this is my nephrologist and he/she knows my situation. I always went to a sickbay and they gave me my medication for my symptoms. If it was not for Gerna who worked at a sickbay and help me on what to do and referred me for this, doing this 24hr urine collection, drawing blood I would not have any history on my disease. But I am here now and need to work from here.
I was discharged on Monday 30th and had to go for a gastroscopy on Thursday 2 Apr 09. Was that something, I had a student learning how to do gastroscopies and she put the camera in and twist and turn and pull back and push in al lot. I am a bit bruised from my lip that was pinched with the camera down to my stomach, when I drink something cold I feel it all the way down. My voice is hoarse but it is over and past. Luckily I do not have a stomach ulcer.
On 15 Apr 09 I must be admitted for further test, this time I will go to theatre. I don't do theatre very good, my lungs usually close up. We will get there when we get there.
For now I am back at work. Today I am going for a week holiday to the farm till after Easter will be back at work on 15th and admission on 16th. I will let you know what then.
I still need to tell you about my living arrangements, but that is another story.

2009-01-26T21:31:00.002+01:00

It is a very low period in my life. I've been in bed for the past week because I have a lot of pain and dizzy spells.
I went to the dr on Friday 23 Jan 09, my blood works are not good at all, my kidneys are now non functional and because of that stones form in my kidneys ad that is what cause the pain.
According to my scan I did on Monday 26 Jan 09 my kidneys grew bigger and so did my liver with the lot of kidney stones.
I try to be strong and go on but I keep on crying every time somebody talks to me. I feel so bad to keep saying to the people if they ask "Not to good, I have a lot of pain" I now say to people "I feel good "
I think the biggest stress that I have at the moment is that I know and I can feel that something terrible is wrong but I don't get the phone call to say I must go to the kidney unit at Pta Academic Hosp for my work-up. The dr at the military hosp don't want to take me to theatre and take out the stones they say it must be done at Pta Academic so now I am waiting and feeling like a ship with no direction to go.
I will manage this thing and I will get through this because I have the Lord that is carrying me and that will keep me save. At the moment it is keeping me up and keep me going.

The people at work are so supportive and they do understand what is going on and the fact that I am on sick leave so much. Without there support and encouragement I would not be able to look after my health.

2009-01-21T07:35:00.003+01:00

Hope everybody had a wonderful Christmas and New Years. Compliments for the new year of 2009, may this year be only good to you.

Christmas and New Year I spend with my sister and her family. I did not take leave over this festive season I worked. At work it was very quiet and not a lot happened.

Petro's daughter did leave for Australia on 28 Dec 08. They are now there permanently. It is quiet without the Christo (5) and Ruben (3) running around in the house. It feels like an old age home.

New Years day I spend with Gerna and her family. I was a wet and rainy day. But is was nice and relaxing. I went to home on Friday so that I will be with Petro and Gerrie. They are all alone during this period with Maretha and her family in Australia (Gerhard (21), their youngest son went with Maretha for a three week holiday in Aus, Tania their second child went to her boyfriend over this period. I could not leave Petro and Gerrie alone that long. I felt so sorry for them.

With my PKD it is not going to well. My creatine is going down alot and I am still waiting for the hosp to phone me for admission. I am so scared I don't know what will happen to me. I feel sort of alone, Gerna and her family was transferred to Potchefstroom and they left just before the schools started, Barry and his family also left for Mozambique and they are now staying there. Petro and her family got there own problems to sort out (they may be loosing there house very soon, and they declared themselves bankrupt) so they have enough to deal with. Maybe I am just feeling sorry for myself but today I don't care what it looks like. I am so tired of being strong so that everybody can sort out their stuff. I am now alone and need to think what must I do. Where are my life going. I don't have a husband or boyfriend to share my issues with so I must sort it out myself. I am now tired of being strong for everybody. I want to cry because I want to, I want to feel sorry for myself because I want to. I don't want to get out of bed in the morning and I don't care what anybody say about that.
And yet I am at work this morning because I promised them I will take minutes for a meeting this afternoon. So somewhere there is still a conscience somewhere there so I am not that far away yet (haha).
I am seeing my dr again on Friday 23 Jan 09 to see my progress. Medically I don't feel to good, something is not working in there but will find out Friday. My mind on the other hand is totally gone. But I will also get through this. There is a Higher Power that is looking after me. I believe He will not let me fall to far, He will help me up again to go on.

Next step

2008-12-04T09:59:00.003+01:00

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.

2008-10-27T10:32:00.002+01:00

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.

2008-10-15T22:18:00.002+02:00

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

2008-09-03T10:44:00.004+02:00

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.

2008-09-02T11:25:00.002+02:00

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.

2008-08-29T10:18:00.003+02:00

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.

2008-08-19T21:50:00.002+02:00

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.

2008-08-18T22:32:00.005+02:00

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.

2008-08-17T20:10:00.000+02:00

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.

2008-08-16T12:27:00.000+02:00

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

2008-08-15T14:44:00.000+02:00

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

2008-08-15T13:29:00.000+02:00

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)