Finally we have answers!
After 2 challenging years of issues with Medical Aids, doctors and hospitals, we finally have answers to “my” life’s burning questions.
OK so first a bit of back story…
After having started dialysis approximately 6 years ago – 10 months after transplant – I have had quite a few complications. Some of which included, Septicemia which occurred from my previous transplant. This caused a rapid succession of perm-cath reinsertion’s (perm-cath is a cathetar fitted just below the collar bone with the tube going directly to the heart. This is used for dialysis). Eventually this resulted in the removal of the transplant kidney and an insertion of a fistula. During this period I had low HB count and was transfused with blood in order to be able to have these operations (this caused more complications). Over the years my dialysis sessions have become more intense, and my body has been deteriorating just as much.
My blood levels are reflecting adequate dialysis. The problem is that dialysis is not in fact a kidney. This means that dialysis can not clear the blood as well as your kidney does. The result of this means that some cells and minerals in your blood are cleaned too much and others are not cleared enough.
For example – The dialysis machine would clean things like albumen and creatinine almost as well as your kidney. It cleans things like sodium too well, resulting in almost complete extraction of said element, therefore they add sodium while you are on the machine. Then you get Potassium, Phosphate and Calcium, which the machine can not remove as well as a kidney does. The way this is countered is with a low potassium and low phosphate diet, as well as supplement medicine like Renegel and Titralac. These are phosphate binders that are calcium based. They make you add calcium to your body when you eat in order to help flush out the phosphate. This is a balancing act as you need to keep both calcium and phosphate down.
This brings me to the next complication.
I have WAY too much calcium and phosphate in my body, which is caused by an over active parathyroid. I will not go in depth over this here. Although the second time I went for a parathyroidectomy things went VERY wrong and it put me in hospital for about 2 months (6 weeks in ICU). I had a cut that stretched the length of my neck. This was left open for the surgeon to be able to clean out all the sepsis on a daily basis. He would compact the hole with gauze and cover with plaster, till the wound healed itself closed.
Why is it bad to have high amounts of phosphate and calcium? I won’t go in depth, but essentially high calcium in the blood means that your veins start calcifying. This means they get thinner allowing less blood to reach the heart, high phosphate causes uncontrollable itching and weakness in bones and joints, this can cause early osteoporosis. To find out more about how calcium, phosphate, potassium and PTH affect the body click here.
[image_frame style=”shadow” align=”center” height=”375″ width=”500″]http://theodorou.co.za/wp-content/uploads/2012/07/surgery-scalples.jpg[/image_frame]I think that is enough back story and here is my situation.
I have a had a kidney transplant before. I received the kidney from my mother. In a normal living donor kidney transplant – they do a crossmatch blood test, work up on both the patient and the donor, make sure everything is OK, they set a date and get the transplant done. After transplant you get taught all about the medication and procedures you need to use in order to keep your kidney healthy, and try not allow it to reject. This is all pretty intense and has its challenges.
After about a year of dialysis – after my kidney was removed – I was finally put on the kidney transplant list. What is the difference between the transplant list and a living donor? With a living donor, you can plan the date of your transplant, be more accurate with the compatibility with donor and get ready for said transplant as needed. With the transplant list you wait for a cadaver (being a kidney from a deceased person that had suffered a quick non traumatic death). Your blood gets cross matched by the transplant clinic to the cadaver’s blood from blood that they have on hand at the clinic. They take this blood from you monthly and keep it on ice. If the crossmatch is negative then you get called in and you drop everything and go get your kidney.
Normally living donor transplants have a lower rejection rate than cadavers. I was on the transplant list for about 4 years, slowly moving up the list till I was number 1 on the A+ list. A+ is the fastest moving list. After awhile of being number 1 on the A+ list we started asking why I had still not managed to be cross matched negative for a transplant. The answer to this was that the only reason I was first on the transplant list was because I had an extremely high anti body count. This meant that whenever they tried to cross match me with a cadaver, the cross match was always positive. Positive cross match means that because of my high anti bodies, the transplanted kidney would be rejected. This meant that they didn’t mean to move me off of the transplant list, but that there was an EXTREMELY low chance that I would ever get a negative cross match. This was early 2010. About 6 months after this news, my nephrologist came back from a nephrology conference in America with new information on a way to reduce the amount of white blood cells in the body through treatment. This could only be done with a living donor. So once again we were looking for donors. My friends – Garth and Adrian, my cousin Pauly and my brother Pavlo all went for blood tests to see if they were compatible with me. In the end it came down to my brother and cousin. Both of which are crossmatched negative. Although the hope is that this is because of antibodies and not because of a bad crossmatching. My brother Pavlo has fewer antigens against mine than my cousin Pauly, so the doctors decided to go with Pavlo’s kidney.
And so the obstacles and challenges started.
First we had to do work up between me and my brother. Then we had to find out how to do a test called a DSA (donor specific anti body). This test does not get done in South Africa, and the results have to be reported within 2 days. We then researched a test that can be done here called (PRA) which gave us a decent indication of what antibodies we were looking to try clear. The next step was to get authorisation from the Medical Aid for a treatment called desensitization, or plasmapheresis. This treatment is essentially used to reduce your immune system from the cellular level, by removing plasma and replacing it with only albumen. The next step would be to get the transplant date set. Once you have a date you start plasmapheresis aproximitly 2 weeks before, this is to fit in about 10 sessions before transplant. After every 3 or 4 treatments you get the DSA test done again , till the anti bodies show a decent reduction and hopefully cause the crossmatch to return a negative result. The amount of treatments and strength of treatments are also normally determined by what is called the teeter of antibodies. This is an indication of how much treatment is needed and this could only be determined by DSA, again which we can not get done here in south africa. Therefore we decided to still do the procedure, even though it would have slightly unknown aspects. Finally in march of 2011 we had a transplant date set and once again, the fight with Medical Aid started in order to allow for treatment to be done as an outpatient for the plasmapheresis. This is because I would need to be in hospital for about 2 to 3 weeks after transplant this time and we are trying to avoid another 2 weeks of being admitted in to hospital before the operation. After a decent amount of fighting we got it accepted. This meant that on every other day, alternating with dialysis, I would have to be admitted in to hospital in the morning go to the ward, get the treatment done then go home after, rinse and repeat 2 days later.
So we went in 2 weeks before the transplant date – I think the date was the 5th of march 2011. While we were at reception being admitted my nephrologist called down and told us to stop them from admitting me and to go up and see him in his offices immediately. We went up and immediately he started explaining that there was an abnormality with the urine specimen I submitted the day before. He showed us that the urine was showing 10 000 parts per milliliter of bacterium and that this bacterium showed up as ecoli. He explained that ecoli is not usually shown in urine and then also explained how this is worrying to him as my previous transplant was plagued by a lot of recurring infections which was influenced mostly by the plastic stents they used to insert in the urethra of the transplanted kidney. This started another round of tests to see where the ecoli was coming from and how to get rid of it, as well as what would happen when immuno suppressed. He explained to us that transplant would be made more risky by the plasmapheresis and that having a bug in my bladder was a much greater risk than we expected, and that we would have to discuss the pro’s and con’s of the transplant with the family.
[image_frame style=”shadow” align=”right” height=”400″ width=”300″]http://theodorou.co.za/wp-content/uploads/2012/07/kidney-transplant.gif[/image_frame]Why is this the case with the treatment?
Here is a quick explanation, with a normal kidney transplant you are bombarded with immuno suppressants. This is because your body actively fights off all foreign bodies from your system, this includes a transplant kidney, no matter how close the match is as it still sees it as a foreign body. This means that a transplant is a balancing act of bring to keep the immune system down so it cannot kill the transplant kidney and not making the immune system so weak that you end up with infections or sicknesses. This means that in a bad situation where you are heavily immuno suppressed and you contract a bad infection, the doctors will stop the immuno suppressive’s in order to treat the sickness. This may cause the transplant kidney to reject but at least if you have something bad like septicemia you won’t end up severely harmed or even dead from it because your immune system starts fighting back within a few hours of stopping the treatment.
With plasmapheresis, however, it is a completely different kettle of fish, as they are reducing your immune system through you bodies cells. This means that once they proceed with treatment they cannot “turn it off” for lack of a better description. This means that if an infection gets bad they can’t stop the treatment to make it better. On top of that the amount of immuno suppression that you go through when undergoing plasmapheresis is MUCH higher than a normal transplant. This means that viruses and infections can morph in to strains never before seen and little infections can get as bad as septicemia. This however is all unknown and can only be treated as they are found. This was another reason the doctor told us to discuss it amongst ourselves. Because I will be going into the transplant with the ecoli already in my system. This puts me in a extremely unique position. My Mother and calls me her “2% child”, my late aunt (Thia Maro) also used to call me this, because when there is a 2% chance of good or bad results – I am that “2%”!!!!!
Once again I’m rewriting history books…
NO – I am not the first person to have an over active immune system and need plasmapheresis in order to get a kidney. In fact, many people have had successful transplants due to this treatment. NO – I am also not the first person to have a constantly recurring infection like ecoli in my system pre-transplant. There are people that have had transplants with these problems with the use of preventative antibiotics. And NO – I am not the first person to be transplanted with MPGN (Membrono Proliferative Glomerulii Nephritis) type 2 or 3, with chance of reoccurrence. I am however the first person to have ALL of these issues all rolled up in to one!!!! This means that if I have to have too many antibiotics as preventative measures, my body might get used to those antibiotics creating anti bodies against them, making them less effective or ineffective at all. Therefore if something goes bad, Im stuffed!!!! Again, these are all informed speculative situations as there has been no one in the same situation to compare against.
This took a bit of thinking and I decided I still want to go throught with the transplant. After all, I am not happy with the way I am living my life right now. I’m always feeling down, sleeping half my days away and feeling tired every other day. I don’t have drive to do anything and I am starting to deteriorate at an extremely fast rate. I have the onset of osteperosis and walk like an old man. My ankles, hips, knees and other joints are all constantly in pain. My skin is always itchyfrom an excess count of Phosphates and Postasium. And the list goes on. I want to feel normal. This is a big deciding factor as to why I want to go ahead and have the operation – even with all the odds.
After all that contemplation I decided that I would like to still take the chance of transplant. I then told the doctor what we – as a family – had decided. So in July 2011, he then told us that there was a lot of swine flu running around and we should wait it out. In the mean time, I visited a urologist and did some tests to check if we could pin point where the ecoli was situated. He also checked to see if there were any cysts in the bladder and kidneys. Eventually we got told that for all intents and purposes the reason that the ecoli keeps coming back is because I do not pass enough urine to clear out the germs from my bladder. He also said that once the transplanted kidney starts working, the increased flow of liquids after transplant should remedy this issue.
Again we were ready for transplant in December 2011. This time, however, the transplant authorization from the Medical Aid had lapsed and we had to ask them once again to re-authorise the transplant. By the time this came through, it was February 2012. Then the authorization for the plasmapheresis had lapsed and we have had to re-apply for that again aswell. My mother has finally got it right with Medical Aid again and I am cleared for everything and ready to go!!!!!!!
[image_frame style=”reflect” align=”left” height=”400″ width=”250″]http://theodorou.co.za/wp-content/uploads/2012/07/crossed-fingers.jpg[/image_frame]”YIP YIP YIP HOORAY!!!!!!!!” – Helen Theodorou
We were told that we had to clear up one or two work up tests and visit Prof Russell Britz, who is the head of the transplant team and surgeon at the Donald Gordon Medical Centre. My nephrologist also gave us some good news a few weeks ago, explaining that there is now a test that we can do called a Luminex test (HLA) that at least will give us a better indication of how successful the transplant can be. At least there is always light at the end of the tunnel…………….. now that we are getting closer we are getting slightly better news as we go along. My belated Grandmother always used to say “there is always a reason for some delays in life”. Maybe she was right – because a year later we have all these new tests that can be done that can show us more positive results.
Now for the crunch of this story.
We visited Proffessor Russell Britz on the 11th of july 2012. He explained the risks of transplant to us once again and asked if we were ready, to which both my brother and I answered “yes”. He then got us to sign indemnity forms and booked transplant date for the 14th of August 2012, with treatment starting at the end of July 2012.
I will be starting plasmapheresis on approximately the 1st of August.
They witll alternate that with dialisys on a daily basis for about 10 sessions. They will be doing the HLA test after every 3 or 4 sessions and hopefully the plasmapheresis is sufficient enough for us to go ahead with transplant. If the results of the HLA show little to no change in anti bodies then we will not be doing transplant. If there is a drastic change then we will go ahead with transplant. If it is somewhere in between it will be assessed before a decision is made. The only other thought that we contemplated was staying on dialysis indefinitely or at least till better treatment or procedures are available, this however is not an option. I am deteriorating at such rate on dialysis that if I do not try for transplant now I will most probably not be able to try for transplant 6 months to a year down the line as my body would be too weak to manage the procedure never mind the problems afterwards. So in essence I have to do the transplant now with the risks or expect to not be able to get one at all.
Anyways!!!!! Sorry for the essay, but this was the best way to explain everything.
I am also going to try and keep this blog up to date with info on the operation and challenges occurring from my kidney disease as that is the real purpose of this blog.
My parents and little brother, Naki will keep everybody updated on Twitter while the transplant is happening!!!!!! That way everyone can be updated as what is happening with Pavlo and myself.
If you do not understand something or think i should explain something in more detail let me know below and I will try make a plan.