Start of tests

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.

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.

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

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.