Motivation...

I sent this to the ladies at the Transplant Clinic as I felt things were moving a little slow:

To All the Roleplayers

I started my second round of dialysis when my first transplant failed in August 2009. I never thought I would need a transplant, let alone two. I am being treated for depression and anxiety. In this last year I have had two potential transplants called off, endured an unnecessary nephrectomy, which has lead to all sorts of complications such as seizures and electrolyte imbalances; not to mention water retention and six weeks of unnecessary haemodialysis. All the while, I have a full time job to keep, complete with my CAPD, and employers to appease. On the home front I have a wife who is frazzled to the core but is a shining example of commitment to marriage vows. She will go to hell and back for me, if only there is an end in sight. I have two little boys who have not played with their Dad for a year now because he has no energy. They have also seen me having seizures and ask if I am going to die. My little girl is four, she needs her Dad…I want to throw her in the air while she is still small enough.

These few sentences hardly do justice to what has been a terribly disappointing year, but my aim here is not to complain but to appeal. I know there are people with bigger problems than mine, I appreciate that fact. I would however like to appeal not for myself, but for those I care about most that this process be speeded up please. Maybe because of everything that has happened we are over-sensitive but it all seems to be taking place so slowly. Days, weeks and months tick by and I seem never closer to a transplant.

I am fortunate enough to have a very willing donor. However, willing donors also have anxieties, questions and lives; and I need to grant mine some respect by not dilly-dallying with his mind. I need a champion to drive this process please guys!

Stop The Clock!

Well at last things have started taking off again and we are on track with a donor. First I must very humbly thank all those of you who put your hand in the air for me. Lee and I appreciate the sincerity of your gesture and we were moved by the very overwhelming response. Thank you all so much.

A shortlist of potential donors, with the correct blood groups, was handed to my doctor. Based on certain criteria, each with varying weighting, he prioritised my donors into the preferred order. The clear winner was my first cousin, Ivor!

Now there is a story in this too! Ivor lives in Vermont, USA! Out of the blue, coincidentally, without cause, he picked this year to come for a "life adventure" to live in South Africa. Little did he know he would be asked to part with a kidney for his troubles. For me, I cannot deny the hand of Providence in this...for Ivor, perhaps a poorly timed holiday! Either way it is an amazing 'coming together' and Ivor is as keen as ever to do this for me. He will be asked to do a few tests in the next few weeks and we could have a green light soon.

Update - 22 July 2010

To my loyal followers, I apologise for the lack of news.Much has taken place since my last posting but with World Cups, school holidays and work issues, I have had little time to update the blog. Let me quickly fill in the basics lest we get bogged down with details.

Six weeks ago I was admitted to hospital just for tests to find out why my chest was not clearing. I was consulted by an ENT who, after sticking a long pipe up my nose, diagnosed sinus problems, not chest. To address my depression and anxiety I was consulted by a psychiatrist while in the ward. It was during this consult that I had my second seizure - I remember seeing the psychiatrist, and remember waking in ICU, but nothing in between! I now remain on epilepsy medication and hope and pray each day that the seizures refrain.

One of my blood pressure meds was recently increased and this caused some rather uncomfortable issues.The drug has a tendency to cause swelling in the legs which is what I have dealt with painfully for the last three weeks. Believe me when I describe my calves as twice their normal size, with the skin tight and hot and blistered. I've been able to wear nothing but Crocs, even to work! This Monday I volunteered to try a new drug which does not cause this swelling but is otherwise unknown. I am happy to say that this guinea pig has relatively normal limbs now.

One of my other recent highlights was having my wisdom tooth extracted the other day. I was required to have a dental check-up as part of my transplant workup. I spent all week worrying about the damn appointment and it turned out to be nothing. The tooth came out in two minutes under local anesthetic so I was very chuffed and relieved by the end. Despite the simply procedure, I still suffered a week of trauma leading up to it....silly hey?

The very latest is that I got out of hospital yesterday after another two night stay. I was admitted for anti-biotic treatment of an infection in my peritoneum (the membrane that does the dialysis). These infections can be very nasty but we caught it early and smacked it on the head before my temperature even changed. It's my first infection in a year which I am proud of. It is quite common for patients to pick up infections every couple of months!

That about sums up the events of the past few weeks. I wish they were as easily experienced as they were written!

I need a kidney...

My previous post pretty much brings up to date as to 'what's happening'! Medically, I still have chest and cough problems. My HB is still low but being treated slowly with injections. My BP is still highish but responding to increased medication. My insomnia seems to be better controlled with new sleeping drugs and my dialysis still happens uneventfully four times a day. Energy levels will not excite the Duracell bunny but I have started taking walks with Lee in the evenings, and sometimes I even mow the lawn! My new doctor diagnosed early signs of hypertensive heart disease, a side-effect of twelve years of renal failure and erratic blood pressure. Yay, I needed that!

There is one quick-fix to most of this...a transplant. The spare parts department within the family no longer has viable stock. I have to go out there now, to my community of friends, and harvest an organ from one of them. I have dreaded all along that I may have to do this, but it has now become unavoidable and necessary. Many of you would have received an email from me. Here is a copy for those that did not:

Greetings All

This is an email I had hoped to avoid. While I may be the one typing the words, they come from Lee, Jason, Greg and Kate too. I have to let the world know that I need a kidney…there is no real way to ask, other than to make my need known. Very recent consults with new specialists have confirmed that my sister Leanne is not a suitable donor. To keep it short, I have developed a specific immunity to Jo’s tissue type, and well with Leanne being an identical twin…you get the idea. They have all advised seeking an alternate donor.

Two things first: Sorry, you may get this email twice as I send it both from my home and my work email. Secondly, by receiving this email, you are not specifically being asked for your kidney. I simply wish my need to be known and spread as wide as possible, so I am including just about every person I know!

Offering a kidney, as well as accepting that offer, is no light-hearted matter and I for one appreciate the gesture more than words can express. If I may though, I would like to leave the emotional aspect out of this email to deal with the solid facts and clinical requirements for now. There are many of you out there who at some time or another offered me a kidney; you just needed to know what, where and how? If you are indeed still keen to help and wish to be considered a ‘candidate’ then this is what you start off doing please:

Go to your local lab and ask for a blood-group type test. If you can’t remember the technical terms, just tell them you need to know if you are A, B or O etc. You must get a printed report of the result.
You will need to get that lab report to me or my doctor as he requires it in writing by law.
My doctor will then select candidates for the next phase of testing, based on these bloods – I do not choose.
The next phase will be a tissue-matching test, which is also just a blood sample at the lab, nothing more.
Again, my doctor will select the best candidate from these results and proceed with donor “work-up”.
“Work-up” is just a series of tests to check out the health and compatibility of the donor. I assure you once again (and Lee will testify) there is nothing more than a few blood tests, scans, X-rays and needles – nothing sore, invasive or unpleasant.
Yes there are medical incentives for me to hurry along with this process, but there is certainly time and room to accommodate any events, job-demands etc that a donor may have. We will plan to fit in.

I don’t think at this point I need to get into the nitty-gritty of the procedure. Once we are down to a shortlist (if there is even a list!) then we can discuss the details and need-to-knows.

This mail may seem so matter-of-fact, so superfluous, so without feeling….but it’s not. Society dictates that we get embarrassed just asking a mate to lend you a new CD. How do you ask for a kidney??? Please read the tone of this email as ‘letting you know my need’ as apposed to ‘asking you personally’. That way I may be forgiven the little emotion given to the magnitude of my request!

God Bless,

Terry.

Leanne's final sigh!

The source of my next donor kidney has been a story in itself. Most of you followers will know that the State called off my transplant, in December, at the 11th hour. They had determined in the final cross-matching with Leanne that there was a problem which effectively precluded her from being a donor. The gist of it being that because my body had developed a specific immunity to Jo's tissue type (having had her kidney for nine years, I would also reject Lee's tissue as they are identical twins.

This all changed in January 2010 when I then made a move from the State to the private sector. In my first consult with a specialist, and then again right away with the surgeon, they both spoke as if Leanne could in fact be my donor. Without being specific, they intimated that they could possibly still make it happen, in spite of what the State had told me. So Lee and I drove home on a new high and even phoned Leanne to give her the great news!

I remind you that these are the guys who decided to remove my existing kidney, then wait three months before resuming cross-match tests with Leanne. One of my posts below tells this story already, but I just want to remind you that the surgery, pain, discomfort and weeks of haemodialysis that followed - was all in preparation for receiving Leanne's kidney. Those weeks were some of the toughest I ever had to endure. I was in my worst ever physical condition and had hit a brick wall emotionally. However, even though it felt like I was moving backwards, it was all an important step in advancing medically, to eventually getting Lee's kidney. There are about two weeks left to go before we can do the planned cross-matching.

Two Fridays ago Lee and I took up an offer of a second opinion with a specialist in JHB. While we had always been excited at the prospect of having Lee 'back' as a donor, it niggled us as to why these DBN guys felt they could do it when the State had already concluded the contrary. We drove up to see Dr Paget, a specialist nephrologist and apparently one of the best in the country. The trip up took about five hours. He saw us for an hour and a half the next morning, and in that time, shattered our existence once again!

Without even referring to clinical data or tests of any sort, he was able to tell us confidently that Leanne would not be a suitable donor. "Donor specific antigens," he explained, "are your problem here." In short,and in principle really, he agreed with the findings of the State doctors. My body will definitely have developed an immunity to Leanne's tissue, through having had Jo's kidney in my body. In fact, he said,"The surgeons will probably watch the kidney turn black before they can even stitch you up". Yup, that's how quick it is. It can reject before I wake up. Imagine coming out of a transplant surgery and heading off for dialysis!

One solution offered, which for me is of academic value only, is what they call de-sensitising. It's basically a two week process of killing off all my bone marrow and charging me a quarter of a million Rands for it! And yes, of course, all the same risks still apply, and then some. Or, as Dr Paget recommended, I 'simply' get another donor!!!?^&%$#

It was one of those trips where we travelled to find a pot'o gold at the end of the rainbow, in the sense that he would agree with my DBN doctors that all was fine. But, given the nature of the news from him, it was like we just found the pot...empty. The news was not good, but in a sense, it was validation of the niggling doubt we had been harbouring, so the trip was still valuable indeed. Besides, so long as we have an empty pot, there exists the possibility of filling it!

Camping out...fitting in:

Now we had not been camping since Hlalanathi in January. So, come end of April, we were thrilled to join our good friends, the Froises, for a long weekend at Villa Spa on the South Coast. It was great to be out again since my op, even if I was not all that active. The kids have a ball as always and Lee and I get to relax in a kind of holiday spirit, setting aside all the trials of every other day life.

All was going well until about 2.00am Monday morning. I awoke, certain I was battling to breathe...yet I was breathing. My throat felt constricted, but wasn't. I eventually wondered if my chest was carrying excess fluid and putting pressure on my lungs...or was I just imagining the whole thing? As you do when you are sitting alone in darkness in the middle of the night and battling to breathe, I woke my spouse up! Poor Lee had to sit alongside me in bed, trying to stay awake and concerned, but being constantly pulled back into dreamland. I eventually put it out my head, raised myself on pillows somewhat, then joined her.

I felt OK by sunrise and was later enjoying the early morning sun out by the fire, (well, the braaistand at least). I was still in my pj's sipping a cappuccino on my camp-chair. The boys were poking coals in the warmth of last night's fire and Lee was seated nearby, sipping tea. Katie was up to something between us. At one moment, Jason and I were looking up at a little bird on a nearby tree...and that is my last memory prior to waking in an ambulance!

Lee says it started with a jerking of my head. Then a shaking and stiffening of my arms which spilt coffee all over me. She no longer thought I was joking when my whole body straightened suddenly and I launched myself backward over my chair. I could tell later that my forehead and left eye took the brunt of the landing. Lee was horrified with what she saw. My tongue was sticking out, I was frothing at the mouth, and jerking, and she says my eyes were filled with fear and begging for help. Mercifully, I remember none of it at all and was not aware of it at the time either. I only wish I could say the same for my kiddies.

She was eventually able to procure some nurses who were also guests at the campsite, though there were no doctors. These knowledgeable ladies calmed Lee down and gave her an assurance that I was only having a seizure...not a heart attack...and that I would come out of it shortly. Twenty five minutes after my 'sprayed cockroach' routine I was being lifted into the back of an ambulance. This is my first recollection of any memory and I remember the paramedic and the trip well. I even wanted to go back to my caravan once we got to hospital cos I was now 'fine'! I must say, despite having to need an ambulance, the trip was fun. We dodged traffic with siren blaring and driver swearing!

My ambulance trip ended with two or three nights in ICU for observation. Always fun in those wards cos you gotta eat, sleep and exist with flipping cords, cables and electrodes attached everywhere from ankles to chest! So, it turns out that my high blood pressure was the cause of the seizure, coupled of course with the general poor condition of my body. Brain scans showed no other evils, thankfully, though it was nice that they found a brain! Anyway, ICU then gave way to a general ward which eventually became my bed at home. All has gone well since, at least in the seizure department that is. Now, when I feel a strange sensation at night, when I wake up panting in the dark...I reach over to Lee and "seize-her"!

Coming soon:

1) How to be my donor.
2) My sprayed cockroach routine.
3) Medical update.

Watch this space...

Sideshows.

Ok, so we are about 9 weeks along from the op where they removed the kidney. I am feeling a lot better than the first five post-weeks barring my persistant cough. It was time for something to go awry again!

Some time back I had noticed a small protruding lump down in my scar area. It was a sort of rounded, peaked, Mount Vesuvius type shape that appeared as if someone was trying to push a pen through from my insides! When I first found it I had thought it some form of medical after-math from the op and was not too worried. However, more recently it looked on the brink of erupting...so I thought I better see a doc!
"Definitely a foreign object," he said as he squeezed the lump between his fingers,"and your body is trying to eject it. It will eventually push through your skin, but you should go and see your surgeon before it does".
So I got to leave with some excitement as well as my anti-biotics for my cough!

That was all on a Wednesday. I got an appointment with my surgeon the following Monday, and drove the 90kms to Durban with some anxiety. He was quite clearly alarmed as I relayed a description of my complaint and finally led me through to his 'cubicle'. I lay on the examination table and lowered my shorts, pointing out the volcanic intrusion with some degree of admonishment.

"Oh that?" he asked. I looked up at him. He was smiling."That is just a bundle of sutures (stitches) that we leave behind as a norm. They normally remain hidden below the patients fatty layer, but..". It was nice to know that nothing was wrong. It was a little embarrassing and inconvenient driving all the way to Durban to find that out!

So that was Monday right. Next day is Tuesday and I find myself driving off to Durban on an unscheduled emergency. I had woken up to do my six o clock bag exchange as usual and found that I was not draining. I jumped up and down, I tried to lean upside down. We squeezed the bag to no avail - I squeezed my tummy muscles, but only farted. Though it had never happened to me yet, it can happen that little fibres break off the peritoneum membrane, and then block the catheter. I gathered this had no w happened and the only means of address was to drive down to Fresenuis in Durban! One of the stars of the whole show to date is Anya, the Fresenuius rep. I sat around in her office for an hour or two as she administered some flushing treatment to my catheter. Then it was back in the car and home to PMB. Touch wood, it is still working fine now.

Funny how these little things come along to bug us. Any of these on their own, without the greater renal failure to deal with, would be worrisome issues demanding concern and sympathy. However, when there is a bigger picture, these little blips are just pimples on the nose, aren't they?

Post Op Haemo:

Two weeks after the op, and still barely mobile, Lee drove me back to DBN for my post-op check and to have my staples removed. This latter procedure had occupied my mind for some time already. The opsite was still numb in places but obviously quite sensitive in others and the thought of having staples plucked out along the cutline was very intimidating. The stand-in surgeon made matters worse by exclaiming that he was a little inexperienced with staples and did not like doing them! I was lying on the bed, facing the wall with a facial grimace embodied by Lee's comforting hands. The surgeon was just trying to figure out the functionality of the staple-remover when the proper surgeon arrived. In the nick of time, the instrument was handed over and I can honestly say that another painless minute later, all the staples were out! Most I did not feel due to local numbness, those I did feel were no more than a little ant-bite.

On Saturday 3rd April I hopefully did my last haemodialysis session. I spent the prior week weening myself back onto my normal bag system (CAPD) at reduced volumes in an attempt to get things working again since the op. I was on the haemo machine at St Anne's in PMB every Tuesday, Thursday and Saturday for the last four or five weeks. Each session was a tortuous 4 hours long and I really battled with sitting through each one patiently. I read, I sudoku'ed, I did crosswords and tried to sleep...it was nightmarish and I mercifully beg that it really is over! The boredom aside, haemo also knocks you physically and leaves you quite weak and useless, particularly on the days you have it. This has contributed to some of the most difficult weeks of my life.

Two or three weeks ago a GP found that my HB (Red blood cell count)was very low..7.1 which explained my extreme sense of exhaustion at the time. I was always totally exhausted and out of breathe and could not move from couch A to couch B without collapsing. Furthermore, I still had, and have, an infected chest which is just adding to the ill-effects I am already subjected to. The doctors only just refrained from prescribing a blood transfusion, as I was a borderline case, and instead have put me on a course of injections to gradually raise my HB. The fun side of course is that these are administered three times a week, into my belly...and by my own hand! I know the diabetics will have little sympathy!

So, to collate all these events together - post-op anaesthetic effects; heamodialysis; chest infection; very low HB and the occasional bout of gout - resulted in an almost deathlike, zombie existence the last few weeks. Medically, and technically, it is the worst condition I have ever been in in my entire medical history! As if that physical part was not bad enough, I ran into a brick wall emotionally, thinking the worst with waves of despair and hopelessness. It was a difficult time for me, but terrible for Lee and the kids too. I thank God for my wife and her strength that she found against all odds. I needed physical and emotional support from a wife that was just as beaten, yet she provided in sickness as she does in health. It is not easy managing a home and family while your husband can do little more than move from couch to bed to couch.

Today, Tuesday 6th April, I am sitting in my office at work. We spent the Easter weekend up in Zululand with friends where we left the boys to spend a week. I was the one of the last to leave a 40th party on Saturday night, was up early as Easter bunny next morning, went for a long walk with hills, and even drove all the way home yesterday! So, in short, I am finally feeling a lot better than I have been over the last few weeks. I'm not sure if its the HB injections starting to work or not, but I sure am doing much better. I am no longer just 'up' but am also 'about'! Of course I am not about to run any marathons but its really hard not to be so upbeat about a marked health improvement. Coming from where I was, I feel great.

That's physically. Emotionally, in terms of worry, despair, pity etc. I think I am also cured for now. I have acknowledged that this whole future lies in God's hands and I have fully accepted and welcomed this knowledge. What will be will be, and it will be Gods will. Only faith can keep out my human tendency toward despondency and worry, so if I focus on my faith, I should be sorted!

Op Site:

Nuts in the Ward

I had a catheter up my willy, another one out the surgery wound, and a drip in my arm. I was uncomfortable, but thanks to frequent jabs and meds, was not in too much pain. On Friday afternoon I was wheeled through to a private ward for my first in situ session of haemo. What a nice change from ten years ago. They sent the machine up to me, accompanied by my own nurse who oversaw the four hour procedure. And so, I lay through my first haemo in ten years, and it went fine really. The real and only difference from before is that this time I was being treated as a paying customer, and not as an expense at the State.

By Sunday they had removed the two catheters and the doctors/surgeons were discussing my imminent discharge (from hospital, that is). As part of the process, he checked my temp and pulse and lo and behold, they were both too high! Another buzz of action ensued as they took blood and x-rays to diagnose the source of my raised temperature. Coupled with a distinct rattle in my chest, all signs were indicative, and confirmed, as pneumonia! Woohoo!

So three nights in hospital for my three in one surgery, became eight. I was put on a five day drip anti-biotic course and subjected to physio battering daily. She also got me out of bed and 'walking' over those few days. Even though I was bent double and anticipated pain at every step, I was relatively pain free for most of my stay, thanks to medication. The willy and surgery-site catheters were removed fairly early on so that brought some relief, and better mobility in the bed.

There are two episodes of activity that took place in the hospital that are better off forgotten, but need mention only for the humour angle they provided. A day or so after the op, I was not yet mobile and still incapacitated by catheters, when I felt stirrings in my bowels. I really need to spare you the graphics here but seriously, has anyone ever succeeded with a bed-pan?? I mean, there I am, stuck on my back, hips raised impossibly high enough to fit the pan under the buttocks...stark naked and separated from my fellow ward-mates only by the ill-concealing curtain. During all this, a nurse enters intermittently, spraying toilet spray all over! Her head popped through the curtains every now and then with a "Are you doing ok Mr Clarke...?" Well, needless to say, I did not do ok and that episode led to another eight days of painful constipation!

One other morning I noticed some discomfort down in the 'Ganguly region'. I took a peek and snuck a feel, and nearly hit the roof. Forgive the graphics but my dingbat was coloured in bands of blue and purple bruising. Even worse was that my galoolies were swollen huge and also blue! Thinking that maybe they had inadvertently damaged me in surgery, I rang for the nurse and described things to her. She promised she would call the doc and relay my concerns. I heard nothing back all afternoon, until eventually a nurse came in and chucked me a small wrapped package. I opened it to discover my brand new, state of the art, trendy...scrotal support! It can only be described as a soft material-made pouch-piece, similar to a cricket box, but with elastic straps running around the legs and bum. The pouch is split longitudinally down the front, obviously meant for toilet breaks, but I found I kept peeping through and getting squeezed by the sides! It lasted half a day before being unceremoniously slung into the bin. You can't beat hanging free! Even as I write this, two weeks since the op, most of the blue bruising has dissipated. One galooly however is still very swollen and sore. Lee had a look and thought from the size and shape that it may be one of my original kidneys that has slipped down!

I finally got out of hospital on the Thursday, exactly one week (8 nights)from the op day. Any longer and I think I'd have gone nuts!

Theatre twice

I arrived at St Augustines at 6am, depressed and fearful, accompanied by my wife Lee. I was given my bed in the ward, handed my theatre kit and given a 7.30am slot for surgery. Everything seemed to be a big rush around me and I only eventually relaxed with my morphine pre-med at about 7.00am! Ordinarily, surgery does not scare me. This time however, I was depressed cos apart from the hernia repair, everything else was going to be worse than before the op. I blame it on the morphine but I felt very upset saying bye to Lee as I was wheeled off.

I recognised prof Haffajee and Dr Naidoo behind their masks. The morphine was really doing the trick now and I just stared lazily up at the theatre lights. I could hear them talking but I was not listening...just waiting for the nighty night jab. Just before knocking me out, they got all excited about some of my blood results just in from the lab. Seemed my potassium was too high for surgery! They took more blood there and then and rushed it off to the lab, while we all waited...all I needed to complete the scene was an apple in my mouth.

The lab sent back the results, and my potassium was still too high. Within a few minutes I was being wheeled back to the ward with only a 'free' morphine shot to show for my theatre visit. Through the night they did blood transfusions to get my HB up; and fed me ghastly clay drinks to get my potassium down. By 3.00pm on Thursday I was ready once again and wheeled off to theatre with another welcome morphine shot!

Oh my word...did I wake in pain! I knew I had been in surgery but did not know exactly where I was and who was around. I was very, very sore and crying for help. I kept being told that they had given me all they could but those assurances were meaningless. Anyway, something must have eventually got through as I passed out again and only woke Friday morning.

Hernia mania.

So, at the February consult with ML Naidoo, we established that transplant plans would be temporarily put on hold while we focus on sorting out the hernia. Great. The good news was that even though I would need to be cut, it would be a mild op and no foreign materials would be required for the repair job internally. After initially suggesting that I may need haemodialysis for three months after the op, he informed me that this would not actually be necessary considering the simplicity of the op. He had initially been concerned that the surgery would interfere with my peritoneal membrane and therefore preclude my CAPD dialysis until the surgery healed. It was a huge emotional and phsycological relief to hear that!

The date was set for Wednesday 24th Feb. I would pop in early, have the op, then be out in a night or two...so the plan went. Some days prior to this date, I got a call from the surgeon, ML. The transplant brainstrust (Naidoo, Naicker & Hafajee) had decided they want to remove the failed transplanted kidney as well now! I went cold. The theory, he explained, was that my body had developed a very high count of antibodies against "Jo's kidney" over the years. With Lee being an identical twin, the kidney could be rejected by my body before I even wake up from the op! By removing the kidney therefore, the stimulus to produce those antibodies is removed, and over time, they even dissipate a lot too. This then creates a favourable environment for the next transplant, which they will also wack with meds to prevent any further build up of antibodies.

So, now my simple hernia op was also going to be a two in one coupled with a graft nephrectomy (removal of transplanted kidney). He also informed me then, that due to the nature of the these ops, they would probably have to put me on haemodialysis for three months while my internal surgery healed! That broke my mind. The surgery was now a three in one, as they would have to insert a haemo catheter into my shoulder (funny bone area) to facilitate haemodialysis. My thoughts kept returning to the fact that I was going to come out of surgery, technically worse off than going into it. Medically, it was a necessary step toward the next transplant, but the op was going to leave me 100% dependant on dialysis and with no renal function left at all. Furthermore, the first three or four weeks would be haemo, not the preferred CAPD. It gnawed at my positivity and confidence and for the first time in my life, I think I slipped into depression.

Swings, roundabouts and Rollercoasters!

To my loyal followers, my apologies. I have not updated due to severe 'writers block', and certainly not through lack of any news! Indeed there have been many ups and downs making up the net progress since I last wrote. I just needed to get my head around some of the issues before I felt I could sit and update my blog. Now I have so much to write about that I'll need to just summarise it all from here...

Since January, we have done the underpinning on the house, redecorated the kids' rooms and gutted the old bathroom...so that's part of 2010 tasks ticked off already. The primary 2010 task of acquiring a new kidney is still work in progress and has technically required what feels like a backward step, to move forward. You will recall that the December transplant was called off by my State doctors and I took a break from medical issues in December, just to have a little holiday. The first medical issue I wanted to sort out in the new year was my hernia...which I had tolerated since November 2009 and was becoming quite sore and uncomfortable.

The first available opportunity to see a doctor/surgeon about my hernia was in late February. I went to see Dr IP Naicker, a specialist nephrologist at St Augustines, as my first act in moving my care away from the State. This was basically only the second time in ten years that I was getting renal medical care from the private sector, so it was quite a new and refreshing experience on the day. What was normally a whole day at Albert Luthuli, was only an hour or so with IP. He then sent me upstairs to see Dr ML Naidoo, a specialist surgeon. This chappy happens to be the renal transplant surgeon for KZN, regardless of State or private care, and although I was there for hernia troubles, we were able to discuss further transplant issues too.

The most interesting topic that arose during both these visits was the fact that both these specialists were talking as though Leanne would still be my donor! I had explained the whole story the State doctors had given me, but they still seemed confident enough to at least want to run their own tests. But, 1st things first...sort out my hernia.

Twenty Ten!

So its the new year now...season's greetings to you all! Lee-Anne and I are back from our weeks break in Cape Town, which we thoroughly enjoyed. We were tourists without kids so we really spoilt ourselves. Sharon (younger sister) and her hubby, Jason, live in Claremont but they were up in Zululand for Xmas. Lee-Anne and I therefore had the use of their house and car which contributed greatly in cutting costs. The only letdown was that the weather worsened on our last two days so we never got to do the cable car that we had left til last. Still, it was a fantastic break, good weather mostly...great place.

Healthwise I was fine too. I still never finished any meal I started but I reckon I got to eat a bit more than usual as we ate out just about every meal but breakfasts. I got a bit tired walking around at times but managed to do all the tourist thingies that CT has to offer...including hours of aimless strolling at the V&A Waterfront! My most troublesome issue actually was my hernia. It is quite uncomfortable most of the time and then also gets sore at other times so that was a bit of a hassle. Will most likely have it operated on later this month...will see doctor/surgeon on this shortly.

Even dialysis went well, considering I was so far from my usual resources. The great thing about this type of dialysis is the ability to travel without any dependence to a facility or machine. As long as you have your bags you can travel. I obviously could not take 7 days worth of boxes with me on the plane but I didn't have to either. The great thing is that my suppliers were able to deliver said boxes to the house in Cape Town, one week before we even arrived there. So that worked out great!

Well, this is the year of the World Cup and much excitement abounds throughout the country. We all have our wish lists, resolutions and action-plans for the new year. I know ours includes under-pinning a section of the house; fixing up and decorating the kids' rooms; sorting the garden...you know, the endless string of costly jobs all home-owners get to enjoy. Of course though, my top of the list for 2010 is a revival in my health. First prize is a kidney. While this is never an easy process, I can honestly say I believe I have more chance of getting a kidney this year than Bafana have of making it past Round 1!

So What Now?

A good question indeed. The answer: "nothing". That's what I am doing about my condition and situation this December. A shelving it, setting aside, back of the mind, wait over there til I'm ready stance!

I thought my Xmas present was coming on ice in a stainless steel bowl this year, but alas, it seems I will be getting the more traditional gift wrap! It's all been so much effort against a few odds to get to Tuesday, only to have the proverbial rug yanked out. We all need a little break and that's what we gonna do. Still praying but no talk, no planning, no worrying. Life first. On the 25th Lee-Anne (wife) and I hop on a plane to Cape Town where we intend to relax and recreate (I nearly wrote 'procreate')for a week; sans emotional baggage, sans sprogs!

Next year we will pick up the ball and start panicking again! Until then, we all make the best of this Festive Season!

Perhaps...

Leanne, having narrowly escaped weeks of convalescence, was able to make their company Xmas function on Tuesday, that she would otherwise have missed. Look what happened, as per an email from her:

"By the way – we had our office Christmas lunch yesterday at the Point Yacht Club and lo and behold who was having their lunch in the room next door :: the renal clinic sisters and doctors!!!!

So I walked up to them and said “So, now I see why we couldn't have our transplant today because you are all here having lunch!!!” They all laughed. Terry, you know the helpful lady, well I chatted to her for a while (on our own) and she said “the last two transplants have been a disaster”. The cadaver recipient is still in hospital.
The cousins (who had their surgery one week before ours) are not doing well and the recipient has been sent back into theatre twice since their transplant (I don’t know why).

So maybe that is also a sign that our transplant shouldn't have gone ahead?"

Housten...we have a problem...

The story for this next post began last Friday but I have been unable to sit and find the words. Most will know by now that the transplant was called off at the 11th hour on Friday morning; this being one day prior to admission and four prior to op date. I received a call from the renal head himself, Prof. Assounga, who informed me about issues with the last cross-matching they did that very week.
Put simply, having had Jo's kidney in my body for ten years, essentially a foreign organ, I have built up anti-bodies against her tissue type. Being an identical twin, Lee has the same tissue type as Jo and her donated kidney would therefore be attacked by these antibodies, basically on the theatre table. It would be a struggle to hang onto the kidney from the start and they have deemed it unviable to proceed with Lee as my donor.

I will still get to have a transplant, but I now find myself in the position of having to go outside of the immediate family. It's not easy. And I say that, even in spite of the offers already recieved from such people. Again I have been greatly moved by those guys and girls who have already put up their hands, each one an angel and a blessing. I know a solution exists, there remains hope...but it's just not easy.In a society that hesitates to lend/borrow CD's; how do you get a kidney? How do you ask...how do you receive?

Last Friday my life was shattered. Weeks of frustrating preparation, sideshows and admin protocol all threatening the transplant date. Lee and I were ready, physically and in our heads. I already had images of being well again, canoeing, cycling, playing cricket with the boys, swimming in the sea...all shelved now. While one could forgive Lee for feeling relieved, she too was shattered and is bitterly disappointed in not being able to help.

Life goes on, and a greater plan exists. I beleive that. Nobody gets to mourn or wallow in pity over this. I am chilled now, accepting, and dare I say...in a place of calm surrender. I have handed this whole issue to a higher order now and only await an invite from Him, as to where, wherefrom and when I get my life back.

Message from Jo:

Offering to be a donor to Terry 10 years ago, was an easy decision that was made with very little hesitation. My only "second of doubt" was the thought that I may not be able to conceive after the transplant, but even that took a back seat in light of saving a life. My mind was positive, Mentally and emotionally, I was in a good place and I had no doubts whatsoever of the sacrifice I was offering my brother.

Lying in the pre-theatre room next to Terry, not quite knowing what we should be saying to each other was probably a moment I will never forget - a deafening silence. Should we not have been saying "Good Luck!", "See you in a few hours", holding hands for a minute. Something?

I remember being wheeled into theatre in tears, while Terry and the nurses were laughing next door. (This story is already mentioned in the blog) My last memory of the theatre was the anaesthetists doing their best to insert my epidural, and before I knew it I was waking up with a chest tube inserted into my lung under my left arm and the smell of flowers around my bed! My first question, "Was my brother alright - did it work?"

My recovery was painful but quick and after a while you forget just how sore it was. I do however, have an enormous scar wrapping around the side of the body, which reminds me every day of what Terry and I shared.

Its been 9 years since the transplant and I've given birth to two beautiful daughters, Amber (8) and Tanna (5) and have continued to live a normal healthy life with no complications at all.

To Leanne, I say, keep your mind positive and your body healthy. Hospitals, doctors, medicines, needles & PAIN aside, the euphoria you will feel when you see Terry looking well is something I could never explain. To know that you have saved the life of another, is to rewarding to put into words.

Tribute to Me and Sister Lee...

Hi Terry and Lee, Dad and I want to wish you both all the very best for the kidney transplant on the 8th December 2009. We thank you Lee for your caring attitude to your brother in donating your kidney to him. It is a wonderful gesture and we also thank Dave very much for agreeing to it taking place.

We know all will go well and we look forward to the two of you bouncing back into 2010 all fit and well. Our thoughts and prayers are with you both and let’s look forward to a wonderful Christmas and a healthy and happy future. Lots love, Mom and Dad

Tribute to Me and 'My' Lee...

Hi Terry and Lee,

We both want to wish you well Ter for next week’s transplant. What a wonderful Christmas present – a kidney from your sister instead of 2 front teeth!!! So glad it is happening soon, as we want to see you back again as the “the old terry”, fit, fat and healthy again. Must say, to your credit, you never lost your sense of humour despite all, and this is what keeps everyone going through the bad times.

We know how worrying all this has been for you Lee and we commend you on how you support Terry at all times and deal with all the upside downs that come with the situation. Hopefully this will be over soon.

Our huge thanks go out to your sister Lee for her caring attitude in donating her kidney to you. Wonderful sisters you have. Jo knows all about it and can pass on advice to Lee during her recovery.

We know all will go well on the 8th with you and Lee, and our thoughts and prayers will be with you both. We look forward to when you “wake up” and your lives can move forward once again. Love you all. Fondest love Mom and Dad.

Sideshow Drama!

As if enough has not already happened, the very date set for our op may be under threat! Firstly, there is a possibility that I may need a hernia op before they can do the transplant. I have had an intermittent swelling in my groin (um, no...more to the side...) which I initially thought was a swollen gland. However, I met with the surgeon on Friday and he seemed to think it may be a hernia - brought on by dialysis pressure and heavy coughing from a sore throat I had three weeks ago. While there exists a slim possibility that they could operate on the hernia at the same time as the transplant, it is not something the like to do and may decide not to. This could mean that I will be having a hernia repair op soon and a transplant next year only! It's not that hernias themselves are dangerous, but if they become complicated and infected it would bode unwell for me while recovering from surgery with a compromised immune system. Anyway, he sent me off for an ultra-sound scan, and lo and behold, they could find nothing wrong! I now await the outcome of these findings...

The second barrier, which admittedly I have come a long way to removing, is the matter of who is paying for the transplant?! For ten years I have been a State patient. All visits, medicines, procedures and consults have been covered by only a nominal daily fee - until now. Yup, two weeks before the scheduled transplant, Admin decide to install new systems and update all their patients' data. The result is that I am upgraded to "private" category and am now liable for double the daily fee, paying for meds and extra procedures and basically being forced to rely on medical aid. The problem of course is that because I have always been looked after well by the State, I have a somewhat insufficient medical aid now that I need it! Anyway, cutting a long story short - it seems Momentum will cover the op in full, and Lee will be covered by the State in full. So, while this whole regrading will certainly change the way I am treated going forward, I think we are still ok for transplant!

Tomorrow I go in again for my VCU...yeehaa! Hopefully while there I will get some more answers on the 'missing hernia' prognosis. It kinda sucks for us all, and not least of all Leanne, that only one week from major surgery, we don't even know if its on yet!

Call to Pixies...

Our kids, and Leanne's, are going up to my Mom as soon as they finish school on the 11th. However, while Leanne and I laze about in a drug induced utopia most of that week, our respective spouses will remain on the full run as the home and kids still need to be managed. So, a humble appeal goes out to any of those pixies out there...DBN or PMB...thanks!

UPDATE: 26 Nov 2009

So much has happened since I last wrote that to be comprehensive, I need to be brief! The transplant op date has been set - 8th December 2009 - yup, two weeks from now! I will be admitted on Saturday the 5th so that they have time to knock my immune system down by the Tuesday. (Our company Christmas party is on the night of the 4th so I may just have a big one and kill off the last of the kidney!) Leanne will join me on the Monday and then we both go into theatre simultaneously on Tuesday morning. Lee will be in there about 4 hours and I about 5 hours. I am already looking forward to the morphine, and so too Lee her epidural!

From there we go into a semi-private ICU ward for recovery; Lee about 5 days, me about 10. My delay is not so much the surgery but also waiting for full kidney function to kick in. Lee will be allowed out once mobile and she will then need a few weeks off at home. Once I am discharged, I will have to spend three months in strict isolation at home - no going out, no crowds, no going to work etc. This is obviously because my immune system is going to be heavily compromised for six months and I need to avoid risk of infection. Have discussed with employer and will be set up with the tools to work from home for that period - again, their support has been phenomenal.

I have been in the wars a little lately - feet have been swollen for three weeks now (full of water); my blood pressure shot up to 211/144 over the weekend and I felt like crap. Doctor says it is symptomatic of further kidney deterioration and my dialysis regime was no longer sufficient. I am now on four bags a day, dialysing around the clock, with fluid changes at 6am, 12pm, 6pm & 10pm. It's a bit more of a nuisance now obviously, and I have less time; but it still remains a tolerable form of treatment. As if all this was not enough, the hacking cough that I had three weeks ago, has caused a hernia in my groin! I will consult with the surgeon tomorrow where he may suggest addressing it at the same time as the kidney op - I mean c'mon, a kidney transplant is boring on its own!

This Monday just past, I had the pleasure of enduring my third (1st in ten years) endoscopy. What's that you may ask - it's a procedure loosely based on ancient Chinese torture! Lying on your side, a ringed flange between your teeth, a long flexible tube is inserted down your throat and into the stomach! If the word "gag" comes to mind then you are right on the mark. As the doctor uses the camera on the end to study the caverns of one's stomach and intestines, pumping you full of air, the patient lies convulsing from gags and wretches - complete with watering eyes and involuntary burps! All this to the melodious sounds of: "Just relax, Terence, stay calm..." So why?? Well apparently the medication they give me after the op can burst any ulcers I may have, so they needed to check - fortunately all clear. I now look forward to the VCU on Dec 1st - where a garden hose is inserted up the "Tony Miles" into the bladder - so much of fun!

I think that covers the latest series of events. Clearly you need to stay tuned as the big day approaches - that's what the blog has been all about.

Lee's Tests Done & Dusted!

This is Lee's latest update:

I attended Albert Luthuli Hospital again on Friday, 6 November. I was there for an angiogram and an ultrasound of the kidneys. I was also supposed to meet with the surgeon today but he postponed it as he still needed to check on a few additional things before meeting with us. I started with the ultrasound which was all okay, and the more she tried to look under my ribs for the kidney, the fainter I felt at the thought of them trying to get the kidney out from under my ribs!

Next was the angiogram. I remember, not too fondly, having the angiogram done 10 years ago for the same reason. I recall them injecting the iodine into my groin, through a rather large needle, and then I watched on the screen as the dye went through my body. I was pleasantly surprised to realise that technology has in fact improved and whilst I still had to take tablets to counteract my allergy to Iodine, the whole process was very uneventful. I had to lie on the bed with my arms above my head and go through the “tunnel” while the nursing staff watched on the monitor from their little room. The heated Iodine was injected once and that was that.

Then it was on to the Clinical Psychologist for some Q and A, particularly as to why I was doing this. Was I paid? Was I coerced? What am I getting out of it? How will I feel if the kidney rejects after one week? How do I feel about living the rest of my life with only one kidney? Then a few “do I know who I am”, “where I am”, “what day it is”, “who is our President” kind of questions. When he asked for the family medical history, he couldn't fit it all in the space provided and had to carry on writing down the margin.

After that it was on to the Social Worker who supports all the renal patients, including donors and recipients at Albert Luthuli. She was so surprised to hear our history, that my twin sister had donated a kidney 10 years ago, that Terry is so young, that he was having a second transplant (she has never had a patient who has had two transplants). Her job was to enquire about my social welfare ie. do I have support from family. Have I made arrangements at work for the time I will be out of the office, who will take care of me when I get home, have I sorted out arrangements for my children etc. etc. etc. She also asked about being coerced or paid to give a kidney.

Someone asked an interesting question the other day “Which kidney will they take and why?” I had no idea so I found out why. Apparently they generally take the left kidney because it is easier to get to and because it has longer blood vessels than the right kidney so it is easier to work with.

Terry and I should be meeting with the surgeon this week to finally set a date so that we can prepare ourselves socially, mentally and physically.

Ciao xxx

My Update:

Well I am back on a 'visit the hospital once a month' routine so for all intents and purposes, things have been quiet on that front. In fact, Lee has been there more often than I in the last month!

I am also well settled into the dialysis routine...my two bags a day...which has not changed since I started. From a lifestyle perspective, I gotta confess that it's not very invasive or debilitating at all. Sure, it's a nuisance and sometimes a hindrance, but as I've said before, it's easy, painless and quick quick. I also said before that I'd rather not need dialysis of course, but its different when you gotta have it. I must be careful that I don't make too light of it either...it has its negatives, and I still need compassion!!!

So, actively, I'm up and about; doing stuff as before, but with a little extra luggage in tow. Of course water sports are a no-no while I have the catheter, but everything else goes on as normal. Physically, I have my moments. On the whole I feel ok, but my body also reminds me of its condition. I mean I have very little renal function to start with; then coupled with all my meds, its quite a load. Many of the side effects of my meds would put a healthy person in hospital! I get tired, I feel unfit, I get headaches, I get painful wind in the stomach, I don't have much of an appetite and I've lost a lot of weight. However, I have the use of my arms, legs, brain and senses so I have nothing much to moan about really.

Well there is one thing maybe. Since my red blood cell count is too low, they have put me on iron tablets. These have to be complimented with self injected medication, by way of syringe into stomach! Yes, its only twice a week so no sympathy from the diabetics I know, but it still sucks. You can imagine how many times I count to three before finally jabbing...

Anyway, as Lee has said below; her tests are progressing and have all been positive so far. (Except the cancer of course...that was negative). I will learn more about my immediate destiny at my appointment next week Monday, but know already it entails a few unpleasant medical procedures! There is talk that the transplant could even be done before Christmas but I'll get more info on a date as we progress with the tests.

Until then, drink lots of water and take care of my spare parts!

Lee's 2nd Update:

Hi there, here is my update. [She is addressing me still: Ed]. Feel free to spice it up a bit - add some humour or whatever. I can't remember all the proper names i.e. what the proper name is for the nuclear Dept. [Nuclear Medicines Department: Ed]

It would also be nice if you could also write a little something about how you are coping. People are always asking how you are feeling now that you are on dialysis etc. I always say "much better thanks", but maybe I am wrong? . [Nope, you are right, but ok, I'll tell them myself: Ed]

Let me know once you have updated it. Thanks. [Ok, I've updated it now: Ed]

"Well despite getting to the hospital at 07h00 on Friday, 30 October for an 08h00 appointment, after sitting through the registration process and then waiting in the Nuclear …[??] Department, surrounded by sniveling, snorting, coughing, grunting open-mouthed chewing patients I only got to see the nurse at 09h20.

I was there to have a GFR – Nuclear filtration something or other! [Glomelura Filtration Rate: Ed] A radio-active liquid was injected into my left arm and one hour later (10h20) blood was drawn from the right arm. After another two hours (12h20), blood was drawn from my right arm again. Through this process they can see how my kidneys are filtrating. All went well and although I don’t have the results I am sure they are fine.

I then popped into the Renal Unit to be handed my 24 hour urine bottle. This entailed me urinating into a bottle for a 24 hour period from Sunday 06h00 to Monday 06h00. [Crikey, i did not know that was possible...I battle to do a 40 second wee...: Ed] This was then delivered to the hospital this morning when further blood tests were taken.

My last and least exciting tests will be done on Friday, 6 November. I will start with a CT Scan of the kidneys – which is fine. I will then have an angiogram. An Iodine dye will be injected into my groin (I think) and then we watch on the monitor how the iodine filtrates through the body and kidneys. As I am allergic to Iodine I have collected meds from my doctor which I need to take at various intervals before the Angiogram starting from as early as 18 hours beforehand. Once that it over – Terry needs to have some tests conducted and then we are A for away. [Thanks for affording me a whole sentence!]

Thanks to everyone for the prayers, well wishes, phone calls and e-mails."

Lee

Leanne's Update:

Dear All,

Just to let you know that this morning I received the results of my first barrage of tests and I am pleased to report that everything is fine. All bloods are normal, glucose test was normal and chest x-ray is normal. So, moving on …

On 30 October 2009 I am booked for a GFR (nuclear filtration measurement) test. They inject a radio-active liquid into my arm and after an hour they draw blood and then after another two hours they draw more blood – that’s it. This will take approximately 3.5 hours.

On 6 November 2009 I am booked for a renal angiogram and a CT scan. For the angiogram they will inject iodine into my groin and then they watch on the monitor to check how the kidneys are filtrating. I will then have a CT scan of the kidneys. Shannon (the transplant co-ordinator) has advised that the angiogram procedure will take about 3 hours. The CT scan should be relatively quick unless there is any waiting period in order for the iodine to leave my body first.

Shannon confirmed this morning that we are still on track for an early December transplant. The surgeon has apparently also indicated that he would like the transplant to take place this year.

Follow the blog - http://www.kidneyclarke.blogspot.com

LuvLee

Some comments:

• Lee,

You and your family amaze me!! You need to let your mom and dad know that they managed (somehow) to create two real life, walking, talking angels. Wow - you (and Jo) should be so proud of yourselves. In your next lives you're both coming back as really rich, really successful (without the hard work) people, surrounded by people who adore you (no different to now) - complete & utter luxury. Terry will be holding the palm leaves fanning you (kidding)!! Tee hee hee.

Lots and lots of love and strength,Nikki.

• Sounds delightful! So much respect for you.

Test Phase 1: Deja vu.

Lee and I celebrated her (and J0's) birthday in the halls, passages and sterile environs of Albert Luthuli Hospital. The "work up" to transplant day has begun, but still with some fair distance to go. For me it was just another routine day, except that I had to give two extra tubes of blood. No sweat for a veteran!

Lee on the other hand had a busier time. But first, bear in mind that she is sister to Jo, and sister to Sharon, both of whom fainted when they last gave blood! Leanne turned white before they even took a drop...they handed her so many tubes she had to encircle them with both hands. She survived, fully conscious throughout, but was now left pale through loss of blood.

Perhaps to perk her up from shock, she was then asked to swallow a glass of glucose solution. Not foul you see, but akin to Captain Morgan Spiced Gold mixed in double Fanta Grape, and with two extra sugars. I think she tolerated the glucose...but her bosses are still querying the footmarks on the office walls and ceiling.

Now confidently settling into State Hospital time, she swaggered off for X-rays and ECG's, all of which looked good! An hour after the glucose drink, they took more blood...then more another hour after that. Her poor body did not know how to cope with the contradictions - being drained of most of her blood that day, after being fed a turbo solution!

Anyway, it was a good day spending tax money. Some less exciting times lie in store for us both, Lee's toward the end of the month; mine probably closer to D-Day. Lee will still need a CT scan, GFR nuclear filtration measurement and a renal angiogram (don't ask, I can barely spell them). I can look forward to a gastroscopy...gascor...well, 'swallowing' a camera right down the gullet to the gut; as well as the insertion of a seemingly-larger-than-urethra catheter up my "Tony Miles" and into my bladder. I then have the pleasure of standing naked in front of the nursing staff, weeing for the camera!

Deja vu! (Even my victim looks the same as the previous one!)

Pics

Yes, the sunset pic above is mine, taken by me in the Kruger. So too are the leopard pics. I have a few of both, but they are copyright protected. I can however be commissioned at reasonable rates if you want some nice pics too!

Transplant Ball Rolling...

On Monday, October 12th, co-incidentally the twins' birthday, the transplant ball starts rolling. But first, do you understand the whole scenario?

Most importantly, what the doctors teach, is that a transplant is not a cure...it's a treatment. Things can go wrong at any time, the kidney can be rejected, even twenty years down the line. The body will try to reject it forever, so it is only the medication that prevents it from doing so. Basically then, its about receiving the kidney and doing what you can to make it last. I have been truly blessed by the fact that I have had about 18 offers from individuals, all willing to help by donating a kidney. That is overwhelming...and where I was worried at one point if and where a kidney may come from, my agony now is choosing where to harvest it!

However, a transplant works best when the donor has tissue-type matching most compatible with my own, and in this instance...family. The first criteria is blood group. I am an A, so I can take A and O groups only. Thanks to those offers from the B groups, but you are out of the running...wife included! Phew. The next step is to check immune-system matching; they have six points which they measure. The more of the six that match, the better the prospect of a healthy transplant, though they will however still go ahead even if none match. They can make anything that "looks like a kidney" work, with their meds, but the better the match the less meds required and therefore the better your long-term health. (The immuno-suppressant drugs are toxic to the body in large doses or prolonged periods).

Once all that matching is complete, and favourable, they then go into the testing phase. Both donor and recipient are subjected to a multiple barrage of probes, dyes, needles and scans to check that general health is conducive to transplant surgery. Once all clear, the op can be done in about two months!

So, my sister Leanne has drawn the short straw...being the only family member left that meets all the above criteria...for now. Nevertheless, she volunteered herself without question, and while she understandably has fears and reservations about the process; she volunteered with conviction. I am blessed.

So, this coming Monday will have us both at the hospital to start the series of health and compatibility tests.

Happy Birthday Lee!

Kiddie Update

These are the little guys who will benefit most from having a healthy Dad! (And at least this pic is recent!)

Kruger

So, loyal readers, you are all wondering if I am still alive! Indeed I am, but have been away in the Kruger Park for seven days, followed by two at Cape Vidal! Fantastic indeed.
How did I cope with the dialysis? Well, it fitted right in. We stopped at Simunye club in Swaziland on the way up, and the way back, where I sat in the caravan and did my bag change, while the others went in for tea and toasted sarms!
At the park itself was even easier. I got up a little earlier, and with a cup of cappuccino, sat and did my thing so I was ready for game drives by six. The midday change was also easy as we were normally back in camp by then too. So, as per usual, it was nothing more than a nuisance.
The game viewing on the other hand was brilliant - 11 leopard, some with cubs, some on a kill; 20 lion, and three cheetah, also on a kill - were some of the highlights.
Back at work now...and in keeping with the theme of my blog, I'll get right back onto the kidney story.

My Kiddies:

For those who aint seen them for some time, these are my kiddies! Ok, these pics are about three years old, but all that I have until I reload my photos. They are Greg, Kate, and Jason...now 9, 3 & 11 respectively!

Thank-you Pixies!

I've said it here before...Lee and I have been overwhelmed by the support we have received. It has come from far and wide, in many forms and each one a blessing. You all know who you are: some have offered kidneys (wow), some have babysat, sent meals, fetched and carted our kids, prayers, flowers calls and emails...it's just been truly amazing! Those are the people we know...

There has been help from an unknown sector however, which has had us guessing for some time. We just called them the pixies cos we never saw 'em. We would get home from work to find a cooked meal, in a dish, ready to eat. All Prudence knew was that it was from "anudder baas...or anudder madam..". These pixies need to know how big their 'little' gestures have been! Of course, we have been unable to thank them, because we have never seen them...well, until I caught two in the act this week!

Late Tuesday afternoon, a strange, well dressed lady rings our gate bell. In her hands a large pasta dish closed with foil. "Are you Terry?" she asks. Turns out she was the same lady who delivered a full roast chicken a few nights prior. Not even half an hour later, the bell rang again. This time, a strange man holding a large foil tray - chicken casserole. "Hi, are you Terry?"

So of course, I interrogated both. Turns out they are parents of kids in Jason and Greg's classes at Merchiston. Nolene, a friend and fellow parent had rallied the class parents to our cause, and they came to the party. Thank you Nolene, and thank you, all you little pixies!

The most amazing thing is...we never asked. We just made our needs known where it counts most, and they were provided.

"Wow, I see you got some colour back!"

Ok. I've been slack keeping up to date here, I know. But...at least I have got some colour back! That's the first thing anyone says when seeing me, since starting dialysis.

Indeed, I am well! I know my last posting smacked of self-pity and depression - not really me - but I was being human I guess. This dialysis thingy is no more than a bloody nuisance and inconvenience...really, I mean it's not sore, it's not unpleasant and it's not difficult. In fact, it's not so bad! Sure, I would rather not be needing it...but it is by no means the big life-ruining monster I expected.

I believe that one of my saving graces is that I have retained urinary functions - I can still shed excess fluids naturally. Many kidney failure patients lose this function and are then barely allowed to drink. Not only that, they also have to endure more severe dialysis regimes to get these fluids out artificially. So, because I can...well, wee...I do not need heavy dialysis. I anticipated starting on four bags a day, I am getting away with two per day, and staying 'dry' overnight. In my case then, dialysis serves primarily to clear toxins and regulate minerals etc. which is normally the secondary function, after water removal.

So, every morning I get up, put a bag in a basin of hot water, make a cuppa cappuccino and sterilise hands and equipment. I then sit and read as a fresh bag of dialysis fluid gravity feeds from the raised, warmed-up bag into my 'space' (peritoneum), via my tube. I take two litres in about 15 minutes then cap off, and I'm good to go for six hours. Around mid-day then, and usually in the office, I start by draining the fluid from me, into a drain bag, before refilling again from a new bag. This takes about 35 minutes. Then at about 6pm every night, I drain that lot, cap off, and stay empty for the night. That is the process each day, no days off.

As 'ball and chainy' as it sounds, there are permitted flexibilities, which are at the very least, conducive to the working man such as myself. The only real rules are that I must dialise for 12 hours a day, starting any time, and using two bags. No bag should be used less than two hours, or much more than about nine hours. So, things such as social events, meetings, travel can all be planned around. Yes, I can even skip a bag without detriment, provided it is circumstantial, not by choice and does not become a habitual short-cut.

We are all pretty much used to it now. Greg was freaked by the tube hanging out my belly and Kate loves looking at my 'sore'. And it works. I felt substantially better a week after starting dialysis, than I had the week before. I still get tired and out of breath quite easily, but I now have the will and ability to do the things I need or want to do, with a new energy. The physical sickly-feeling has gone, I no longer taste the toxins, or have tingly itchy spells.

Yup, it's crappy needing dialysis...but its a blessing to have if you need it! I think I am back in me now and that's why I've got my colour back.

D-for-Dialysis Day

Sparrows are just starting their morning songs outside. Faint light glimmers off the frosted lawns and in the distance, a dog barks the morning in. I have been awake since 4.00 a.m. - tossing and turning in a quagmire of thoughts.

A little later, I will be in the hospital ward in Durban, officially starting my dialysis regime. I feel so indifferent...there is a struggle taking place between my Faith and my simple human nature. While my cloud has many silver linings, not least of all my wonderfully supportive wife, I can't help feeling that I lose something today.

Maybe its just physical...acknowledging the restrictions imposed to my activities, abilities, needs and I guess my general lifestyle as I know it. Yes, I will most certainly start to feel a lot better once I start 'sponging' the toxins from my overloaded blood...but, at what cost? I almost feel I could go on as I am, now, without dialysis...I'm sure the kidney degeneration has hit a plateau and I'm not getting any worse. But, medically I must dialyse - even if just to relieve the eventual burden on other organs.

Maybe I feel demasculated (is that a word?)? No longer a normal human, but some kind of freaky, sick, half-strength survivor. What good is a husband and father who needs to connect to bags every six hours? How does my illness affect the lives of those close to me? How do I deal with the way I feel that they feel about me - even if I know I'm getting it totally wrong?

Faith?!

At church on Sunday a young girl I've never met before, came up to me saying she had a message from God. (The minister had asked that we pray for messages - tough for beginners). She said she had three words for me and was not sure if they made any sense: "Terry, dont worry." That hit home hard. And yet, still my human nature persists...the tangible worries elbowing Faith in a neck and neck dash for the finish line. Funny thing is, while I struggle with this race, I know who finally wins.

When I next sit down to write here, I will be changing fluids every six hours, four times a day, seven days a week. The immediate environment will have to be clean and sterile...so too my hands, of course...and I will be adapting to the new-life baggage.

And, I should be feeling a lot better too! I'll let you know.

Day 3 - Training:

Yup, just as I thought it would go! Arrived at the hospital around 10.30 a.m. and waited until 11.15 before anything happened. Once again we were taken to the ward and asked to simulate one full dialysis cycle...which I just about did with my eyes closed, and only infected myself once. That itchy nose thing again.

After that, the Sister officially concluded that training was over; either because we were by now adept, or because she was going on leave that day for a trip to Australia. I returned to the renal unit to have a few stitches removed (from the camera-insert cut). I was then free to roam my last week as a transplant patient.

Dialysis Training Update:

So, how is the training going? You might ask...; well its a bit like this:

I started on Wednesday this week, and only needed to be there (Albert Luthuli Hospital in Durban) at 11:30 am. I was registered by 11:00 and still waiting for the sister at 11:45. By midday we were nestled in a little room in the renal clinic, just me and a young Indian lady making up the trainee list. By 12:30 the Sister thought we should have a break...a break? We had only just got started. Lunch break was an hour...spent sitting in my bakkie reading a book, while Sister King went for staff fish and chips in the canteen, no doubt washed down by the state regulation green tea...no, not Green Tea...green tea!

We "convened" at 1:30 in the renal ward, for a bit of practical demonstration. As it happens, the only two trainees were on two different dialysis systems so we could not do the pracs simultaneously. I sat on a chair in ward reception for 45 minutes while Sister King sorted Pravashnee, before I too was summoned. I watched for 45 minutes as the sister demonstrated a dialysis bag procedure from beginning to end. I reckon 40 of those minutes are spent washing hands! My word do you wash hands...I don't know how sister King has flesh left on her digits!
By 3:30 day1 was declared over. Wow, how does the State do it? Where else can you stretch an accumulated 1.5 hours of actual activity over a day??

Day 2 was little different, only we finished at 1:30pm! This time was a little more exciting because we got to do the demos ourselves...soooo exciting really, I can't wait to start proper!! Sure. I was marked on washing my hands - then had to do it again after tending to an itch on my nose. Amazing hey...there you are with sterile hands up in front of your face, feeling a little like Doctor Shepard ..all your sterile instruments laid out on a stainless tray in front of you...and your nose itches.
Well, I got through my 1st prac ok...if 'infecting myself' on only four occasions is ok...three from an itchy nose, and once from boxers riding up my...well, no guessing what I was not supposed to have done at that point. I soon learnt that when all else fails, you cant remember the next step, or simply need a moment to think...wash your hands. It impresses the hell out of Sister King, even if the dialysis fluid ends up on the floor cos you missed a clamp!

Just now I head down for day 3. I am beside myself with anticipation and excitement. I cant wait to see how many hours of the day we are going to spread our actual hour of work over! We are also discussing infections...which is such fun because we do all this amongst the renal patients in the ward, all suffering from infections. Quite clever really, cos even as Sister King is lecturing on the signs, symptoms and avoidance methods of infections, all around you are patients moaning in pain and screaming for morphine. Quite effective I must admit.

So, what next you ask? I think...they leave me alone for the whole of next week...no dialysis, no hospitals. I will get back to the office, dust off the desk and fire up the ol laptop once again. I believe I will then be admitted to the hospital on Monday the 24th where they start the dialysis in the ward...then let you go when they are happy with the catheter and my self-sufficiency. At that point I rejoin the big wide world and things return to 'normal'...only with a bit of extra baggage.

Then, hopefully, I can wash my hands of this whole phase...

Update: 11 August 2009

I'm back!

I have been indisposed since Lee created this blog and only now do I get to have some words! Last week Tuesday I had a catheter inserted in my lower belly, which will facilitate dialysis and remain for the said duration. I assure you, it is not a fashionable item and I have no hopes of pre-empting any new trends. Lee updated you on the specifics of my accommodation and I can add that I'm very happy to be home.

The procedure, though under general anaesthetic, was nothing major thankfully, and I got to enjoy a bit of morphine from time to time. The dressing is the hassle at this stage as it needs to be changed daily, for the next four weeks, and both Lee and I have to go through many motions of hand-washing and sterilising as we proceed. As encouragement though are my memories of ward-mates who were in for catheter infections...oh boy...I don't wanna go there!

I was released last Thursday and have taken it easy at home since then. The mild pain from the procedure, coupled with the initial awkwardly tight dressing, had me walking slightly stooped and favouring my abdominal muscles. The result is that now these muscles are more sore than the original pain! There are also a few stitches at another small cut, where they inserted the camera...yup, keyhole stuff...and they will come out later this week.

Even as I write this, I am waiting for a call from the renal unit to advise me of the next step. That will be the CAPD dialysis training, and will in all likelihood take place this week, from today. There are many aspects to it and since the patient is relied upon to self-administer life support, they like us to be well advised and self-sufficient. I won't actually be using my own catheter for training as it still needs to settle, but will probably start my dialysis next Monday.

Will let you know how it goes!

Update to 5 August 2009:

Well that was a week ago.....Yesterday Terry underwent surgery for the CAPD Catheter.Last night Peter and Heather Kyle (leaders from our cell group) drove me to Albert Luthuli Hospital to see Terry. Terry was very nauseous from the anesthetic last night and was quite weak. The nurses did not give him his nausea medication at the time the doctors told them and 2 hours later when I arrived I had to chase them up - so the poor man was retching in pain. I am confident he will feel stronger today.

The most important thing is that surgery went well and by the looks of things they did a very neat job!I have not been able to get hold of him this morning but have phoned the ward and they have said he is sitting up and doing well. I have included on the Blog more technical info about CAPD and what it involves and other info about kidneys - it is quite an education!

Now to thank you all ... where do I begin?Terry and I have been humbled by the love and support and the HELP we have received to date. This is in no particular order... to Jenny (T's mom) you are awesome and have been the rock in the family we have so desperately needed, to Chris (Dad) for being there always, to my Mom - thanks for trying to get here - I know you did your best and are there for us anytime we call, to our Cell group - all of you have blown us away with you love, prayers, meals, babysitting and lifts - WOW!!!

To Terry's colleagues - a refuge in a storm - knowing that we have your support has been so comforting, to our siblings, in-laws and relatives, thank you for listening to every detail, for being there and just saying "count me in", to my work colleagues again WOW - you listen to me fall to pieces every now and again and you make no judgements- I know that you are here for us and it gives me such comfort, to Linda and Arnold for all the school lifts and for again listening to me have my wobbly moments so patiently, what would I do without you? Thank you! And last but not least to all of our friends and their friends that have selflessly offered to "be in line", and for all those who have sms'd, e-mailed and called, for the prayers, for the networking - how do express how we feel? We have been so lifted up by this experience it is too much to even contemplate and fathom at times - please know that we are awestruck! THANK YOU, THANK YOU, THANK YOU!

Terry will be home soon and will start training for the Dialysis in about 10 days time. We look forward to begin the process of clearing the toxins... read all about it below ... He should start to feel better once his toxic load is reduced.To be posted on this blog .... info about transplants and being a donor ..... so watch out for future postings!

Loads of Love..... Lee