Somewhere out there!

Hi Folks

What follows, is the content of an email I received last week regarding the many steps to prepare for a transplant:

“We would first have to find which of the donors, if any, is the most suitable for the process of giving a kidney. 

“S.” from the Transplant Centre  is working on getting blood drawn from your donor in Kimberley. I will follow up.

We then need several bloods and tests done to establish if you are fit for transplant. (This is the first faint with frustration part…!) For this we need authorization from your medical aid. (More fainting !!!!) Wits Donald Gordon have requested a motivation letter from your nephrologist and I am in the process of getting it from him. (I could be unconscious by this stage, he  is a very, very busy man!)

If they find a suitable donor, that patient must go through a medical work up to make sure they are fit for donation. The Transplant Unit’s mantra is, very understandably,  “Don’t damage the donor.”  (Will he duck, which the donor can do at any stage, or will he stay the course?)

Once your workup and the donors work up are completed, an application must be made to the department of health for approval. (This alone can take 3 months)

Once all this is done your nephrologist will need to coordinate the desensitization process with the surgical team at the transplant centre.  (I’ll explain desensitization once I know more about it.). The transplant must take place immediately after desensitization.“

If I haven’t been arrested for thumping someone with frustration getting myself and my potential donor through the work up stage and “approval”, I have a shot at a successful transplant. My saving graces are my doctor, and the two, very capable transplant coordinators in my dialysis unit, who will push and shove where necessary to get the  paperwork and tests done. My chances, without them, would be close to non-existent…

A positive mental attitude will get you through a lot more than you think and I always remind myself I am not a refugee and am fortunate enough to be on a good medical aid. Sometimes the best way to handle your challenges is to face them head on. Despite the temptation to give up at times, keep standing at all costs, change is a constant!

Enjoy the Wimbeldon tennis if you watch. Actually, it’s amazing what the game of tennis can teach you about perserverance!  Speak soon. Love Di, Legh , Kit and David.xxxxx

PROGRESS

Dear All

Thank goodness we are half way through winter already.  The cold, combined with a string of health issues related to having no kidneys and trying to keep your head up when people are dying around you has left me feeling like I’ve been in a wind tunnel the last few weeks.

Anyway, there is light at the end of it all… shortly I shall begin the process of desensitisization. Essentially, it is virtually impossible to match me naturally with a donor because of the high amount of anti-bodies I now have (from blood transfusions), and  pregnancies. In simple terms, my blood is replaced through plasma exchanges and then the docs hit me with steroids to keep the anti-body levels down.  They will do this until I match a donor and then do a transplant.  It is commonplace Overseas, but not here…very expensive and a lot of extra work for the already overworked doctors, but the results for survival are twice as good as remaining on dialysis long term.

Going to be an interesting few months ahead I think, but I will document it here to educate and share the progress.  I’m back painting again, even the plates were breaking one after the other in the kiln…  #ThePlatterProject My kids at one point suggested I might have been a serial killer in a previous life!! Anyway, like everything does in life, the tide has turned and I am feeling positive about my health and future, as I hope you all are. Love Di and kids. XXXX

Relief

Hi All

Phew, how quickly time passes!  Just to report that while there is no end solution to finding me a donor as yet, the good news is that I have remained out of horrendous hospital for the last 4 months…..something of a miracle in itself!!

With no kidneys, I am not getting those awful infections which were slowly killing me.  I still obviously go to dialysis 3x a week and do get very tired, but am able to paint more now, which gives me the motivation to keep fighting.  It is the support of my family, friends and people I don’t even know that constantly reminds me it is good to be alive.  Until next time, let’s all keep trucking.   Love Di and kids. xxxx

Onwards and Upwards

I’ve just seen a double collared sun-bird in all it’s glory on Africam.org, what a beautiful way to start the morning!!!

We are changing tactics… On Saturday, my daughter an I went to a talk given by our local transplant centre.  It turns out, that if you are highly sensitised (have a high number of anti-bodies), and are difficult to match with a donor, you may be bumped up the donor list… As I am sure I could win a prize for all my antibodies (from blood transfusions and pregnancies) I am, at present, getting all my paperwork together to submit it for consideration… could be an interesting turn of events.

Have a good day all.

Love

Di and kids.

xxxx

Friday Afternoon

So, it was not meant to be, Adriana is not a match.  It is my high level of anti-bodies, not her that is the problem.

I think we will leave trying to match anyone for a while, it is emotionally taxing and I feel a lot better without any kidneys, just permanently exhausted.  We will explore my options (if any) in a few weeks time, I’m off to paint now. Have a lovely weekend all, and  thank you for your continued interest and support. Love Di and kids xx #ThePlatterProject

Coping skills

Hi folks

As you know, Adriana, Martin’s wife, by some small miracle turned out to be O+. As O is the most common blood type, perhaps it is not that much of a miracle, but it is one step further for me. This week, we will try for the tissue typing and the exquisite agony of waiting begins again to see if she is a match.  My kids deal with with the anticipation by completely blocking it….no expectation, no disappointment. I paint, it distracts me and we mostly get a hugely positive outcome from my efforts. (except when they crack in the kiln)..

I read somewhere last week that spouses have a 1% chance of matching each other, so my cousin and his selfless wife (who donated her kidney to him) indeed had the god’s on their side last year in the UK.  It is one year later and they are both in fantastic health.

I always think life is a bit like a sales pitch, the more doors you open, the more chance you have of getting that sale!  Have a good day all and I’ll keep you informed….PS: Open those doors in YOUR lives!! love, All of us.xxxxxxx

So…..

Hi Folks

Half an hour ago I received a call to tell me Adriana is O Pos. (Same as me)  As I was lying in dialysis, I resisted the temptation to burst into tears.  To be honest, I am mentally, physically and emotionally exhausted with the ups and downs of trying to find a viable match.  She is going for the crucial tissue typing tomorrow morning and we will find out the results probably early next week.

I think, I must at this point, mention my kids, who have stood solidly beside me through this journey from day one.  My ex-husband and I have been blessed with three marvelous, kind kids (despite their parents hahahahaa), so thank you Legh, Krist and Buddy.  I would NEVER have made it this far without you.  I also thank my extended family, friends and perfect strangers who have given us all so much encouragement over the last 4 years.  Watch this space and enjoy your day/evening.

Love, Di, Legh, Krist and David.xxx

 

 

10th attempt…

Hi folks

Some of you may by now know, that unfortunately Martin is not a viable match with me.  He was devastated and I, quite frankly, am just numb. I have too many anti-bodies from numerous blood transfusions and my body would reject his kidney immediately. By some unbelievable miracle, Martin’s wife, Adri has come forward as a possible donor… She is going on Monday 27th February to check her blood type. As awed as I am by her (and Martin’s ) extraordinary kindness, I am not holding my breath for a match.

I am remarkably better since both kidneys have been removed.  As long as my heart keeps beating, (I’m on medication for it now, as dialysis damages it) I should be able to kick around for a few years yet and maybe that is my destiny.  From now on, I am not “waiting until I get a kidney” but am going to live my life as fully as possible, following my passions (family, friends, music, nature conservation,#ThePlatterProject, to name but a few) and screaming with hysterical laughter at State of the Nation’s addresses!!!

We can’t always control what happens in our lives, but we do always have choices, and I feel oddly reborn after yet another disappointment regarding a match (plus 4 plates cracked in the kiln which nearly put Maureen my potter in hospital with distress). I have almost caught up with the plates (which are on order from the USA) and if Adri is not a match, we will try one more person and then leave it in the hands of the Gods…..  Onwards and upwards, giving up on life is just not an option.

I hope you know your individual passions and talents, they are motivations that keep you going in the face of adversity and when life has it’s kinder moments. Have a wonderful week and keep smiling. Love Di, kids and animals. xxxxx.

 

 

Well, I received news on Thursday that Martin is unfortunately NOT a match. My oldest and dearest friend asked me a simple question…”are you numb?” I smiled as I answered realizing why I love my friends and family so much, they just “get” me. She was exactly right, it has taken a couple of days to sink in. Martin was devastated he didn’t match. My doctor is not keen on desensitization (basically forcing my body to accept a kidney). I lay at dialysis yesterday, thinking about my options. You learn to temper any expectations in this situation, but I hate the stress it inflicts on my loved ones. Anyway, at about 9,30am I got an sms from Martin’s wife who said she will go for a blood test next week….. I’m still reeling from utter shock. There is still another potential donor, a family friend who lives in Kwazulu Natal, so all is not over yet. I also wrote to a couple of surgeons in the USA yesterday, asking them whether we can acquire their software for matching donors and recipients…in SA, our transplant staff are paging through people’s files to try and match them… Ludicrious. Anyway, I’m not down and out yet. Watch this space and love each other, there is far too much ugliness going on in the world at present. Love Di, Legh, Krist and David. xxxxx

Tuesday

Hi folks

Well, we toddled off to the transplant centre this morning and gave a few vials of blood for initial testing to see if Martin and I match. (Not for Valentine’s day, to see if our bloods will tolerate each other!) Martin, unlike a lot of men, handled the needles without a squeal, we were most impressed!  We shall know on Friday if the initial test produces a good or bad result regarding a match.  9^th attempt at matching, no choice but to hope and believe this is finally going to swing my way. Roll on Friday…