Authorization

Hi All

I’m beginning to heartily dislike that word, it makes my hair stand on end.

Anyway, at last, good news. The Department of Health has finally approved my transplant (I was told it would take about 6 weeks, so by the time 12 had elapsed, I was close to complete bucket case status). Even having a positive attitude, being relatively strong emotionally, and having a wonderful support system, couldn’t fight of the beginning of doubt by week 9: Will they decline it? Why is it taking so long? Because of desensitization has it been put in file 13? Have they lost the file?

It was a total nightmare, mentally and emotionally for me and those close to me from week 9 – 12. I went to a dark and terrifying place and barely staggered through each day. After we received the joyous news the transplant had been approved, we were quickly slapped into line again as we were informed that Discovery had to now approve my medical aid…again.  New year.  I must confess, I nearly went into cardiac arrest……last year took 3 months. Anyway, 2 weeks later (today) we received that all important, invaluable authorization.

From here, the docs book out a date for the transplant to take place and work backwards on the sessions of desensitization…. 4 hours of dialysis followed by 4 hours of plasma exchange with medicine to suppress my antibodies.  The docs will do this day on, day off until and IF they can get my antibodies to match M’s, my donor. This could take anywhere between one and 3 weeks and then the transplant will follow immediately if all is good.  M’s doctor will of course do a few final tests on him, prior to transplant as the whole mantra of the transplant unit is “Don’t damage the donor”.

My most saving grace is that not once, have I ever doubted my donor nor his life partner’s commitment to this process. As human beings, they are both… well… indescribable. I am not out the woods yet, but at least we have a plan, the best doctors in the world and lots of prayer, love, positive energy and laughter, what more could we need?! We thank you all and hope that someone, somewhere is learning something from my journey, as this is the purpose of the blog. Lol Di, Legh, Kit and David. xxx

Still waiting…

Dear Folks

The kids and I wish you all a very happy 2018, and may all your dreams come true.  As you know, this is primarily an educational blog, so this post will be short and sweet.  We are 2 weeks into waiting for approval from the Department of Health for desensitization and subsequent transplant to go ahead.  I must admit, the waiting is awful, but I must just keep on trucking until we start.  I have heard so many horror stories and so many positive ones that I think the thing to do is realize that we are all unique and react to situations differently. And so we wait….

Have a good week folks and try and be positive!

Love Di, Krist, Legh and David. xxxx

 

Are we almost there?

Hi folks

Well, this morning we received the final letter required to motivate for desensitization and a transplant! The exciting admin part started in April 2017…

The phrase “swimming upstream”, comes to mind…. What a loooooong, tedious, frustrating process it has been to get this far.  All “M”’s and my results will be submitted to the Department of Health for (and I choke on the word) approval… This can take between one and three months;  given that Christmas is around the corner, let’s start counting from January 2018.

Anyway, at least we are going forward.  Anything can happen between now and the actual transplant, and there are no guarantees the transplant works, but we choose to look on the bright side. I quite fancy eyeing up some pretty Greek boys on Pathos in about a years time!!!

Until I communicate again, my family and I wish you a very happy holiday season. Be safe and be kind, 2018 has to be better than 2017 for the entire world. Once again, thank you my adored children, medical staff, friends and interested parties for your interest and kindness, let’s see where we are going with all this! With much love, Di, Legh, Krist and David. xxx

 

Is life a game of chance?

As we draw nearer to the end of another tumultuous year both personally and in the world, I found myself wondering, is life just a game of chance, dependent on how you play the cards you have been dealt..?

Well, clearly there are some things we cannot control: governments, world climate, inequality and bigotry. What we can control are our own attitudes to whatever touches us personally and in some instances at a distance. My family has chosen to make a difference with the #ThePlatterProject, raising just over R300 000.00 in our first year, which has been distributed between wild-life conservation and children needing assistance with health/education, we will carry on to greater heights next year.

(We recently ran a giveaway competition on #ThePlatterProject, which proved to be very successful and fun! See the link (https://www.facebook.com/ThePlatterProject/videos/1950485768523804/) for a clip of the draw we did for #PPGiveaway)

I believe that M has only three tests to complete to check if he is fit enough to donate a kidney.  This will happen on th 14^thNovember. If, by some miracle, he passes all of those, our combined results are sent to the Dept of Health for approval for me to go ahead with desensitization .This approval could take one to three months…. After that, desensitization follows. This procedure has an 80% success rate overseas, but is not commonly done here, because of the expense. As my doctor told me I am unmatchable (I did tell him I took that as a compliment…Haha), I have no choice but to take the desensitization route or slowly fade away on dialysis…. Not really my style.

A few nerve-wracking months ahead, but I have chosen to look beyond that to what more we can do to better saving our planet and helping children, when I am back on my feet after the transplant. Let’s all take a combined breathe and see what we can do to make the world a better place…. It’s cumulative you know; a smile, a kind word, a small practical gesture, a life saving procedure… have a good day all and take care. Love and best wishes, Di, Legh, Kit and Dave. xxxx

Finally…

(Pictured is a sneak peak of my latest attempt for #ThePlatterProject, inspired by a young man named Mark)

Hi All,

Well, after what seemed a marathon of emails, delays, and endless frustration, we finally received the go-ahead for M to begin his work-up tests from our medical aid. What this means is that we are now going forward again, after a 4 month stall… I am mentally, physically and emotionally exhausted from the strain, but now have a renewed vigour.

There are still many bumps in the road to overcome, but I find that not acknowledging them helps you to avoid tripping!

We had a whistle stop trip to Cape town last week to hear Legh’s defence/justification of her Phd. I learnt a good travel tip to pass on. Planes are full of bugs and it’s easy to pick up infections on them. Bar wearing a mask, where you almost die of asphyxiation, you can rub bactroban or something similar in your nostrils…. It effectively blocks any bugs getting into your system… worked wonderfully for me!

#ThePlatterProject continues to flourish. It is very satisfying being productive and having a sense of purpose, at any time of your life actually, but possibly even more so when your health is compromised, as it stops you feeling sorry for yourself. We have 2 big auctions coming up in the USA shortly, so are very excited to hear the results of the sale of the platters. Otherwise, I will keep you posted on my progress, health wise. To be honest, you either have to be completely unconscious, or have balls of steel to go through this process, there are so many unexpected issues that arise, but like anything, it is how you rise to meet them.

I am a bit doff when it comes to social media, but I really wish to thank so many friends, and even strangers who support our cause and my journey, it is not a cliché to say that it gives me the strength to soldier on. Have a wonderful day, it’s a cracker in Jhb today.

Love Di , Legh, kit and David. xxx

Hurry up and wait…

Dear All

Well, it is trying to rain in Jhb, which is promising. I have eventually received a second letter from the Prof to resubmit to my medical aid to get authorization for M’s work up tests . I am fortunately on a private medical aid, and have the added benefit of very competent admin staff to support me, but even they find itustrating having to go through the correct channels.  Should I have not received authorization for M by the end of next week, I will be paying my medical aid company a visit in person.  Time is very much of the essence as we near the end of the year.

To be honest, it feels like I am sitting in a little dinghy in the middle of a rather large ocean… anything can go wrong at any time, so you have to temper your hope and excitement with rationalizing the possibilities: M may have an, as yet, unknown medical problem, which would immediately count him out, the medical aid may not see fit to grant authorization, which would set me back a few weeks, M could change his mind, I could catach an infection, anything could happen, and all this BEFORE the department of health has granted permission for the desensitization to take place.

Last week, a patient who had received a transplant about 3 months ago, unfortunately passed away.  Although the doctors try their absolute hardest, things do not always go according to plan and it is unsettling.

I try to focus on the positive…. like my little 16 year old second cousin, who managed to sign up FIFTY new potential donors in one day at an event at school and her little sister, bless it at 8 years old, who saw fit to write about me as her hero for keeping my head up and fighting the good fight to get a kidney transplant and a chance to see my kids marry and produce grandchildren.

As an aside, you may remember my cousin had a transplant last year in March (from his wife…. the odds were  a 1% chance of a match). He is doing excellently and his wife, who is probably in her late 40’s (hope she doesn’t kill me for saying that!!!) has just completed her first half marathon, POST DONATING HER KIDNEY to her husband, how’s that for a positive outcome??  I hope the next time I write, it will be either that I have stood on someone’s foot rather heavily at the the medical aid company or, hopefully, that approval has been received, and M can start his tests…. until next time. Please cross your fingers and toes, pray or send out that positive energy, I have so much to do still!!

love Di, Legh, Krist and David. xxxx

Inch by inch…

Hi All

I smiled as I wrote that, wondering how many people reading this blog actually know what an”inch” is, I doubt my own kids do!  It is a measurement of length, and equals about 2.5cm.  The point I am making is that the ball is rolling forward now…..very slowly!

Both my potential donor and myself have to undergo various blood and urine tests, angiogram, mammogram (for me), check the bladder, female tests, psychological evaluation, abdominal scan and gastroscopy and possibly a few others.  I have already completed 7 out of the ten tests (all good so far), but my medical aid, in their wisdom has dropped the ball by not reading the documents presented to request authorization for M, but have merely told us that he doesn’t match. We known this since March…, so, the Prof must rewrite a letter of motivation for the desensitization and we must just be sure it gets to the right department at the medical aid company.  So, paper work holding things up, why am I not surprised?

Once the authorization is received, M will go ahead and nail all his tests.  If he is fit to donate a kidney and passes all the medical tests, we will begin the desensitzation almost immediately.  As all tests have to be less than 6 months old, I am agitating to get the authorization asap, as once the desensitization (7 sessions of 5 hours and I might need 3 courses…) has taken place, I understand the transplant is done immediately.  So theoretically speaking, I could have a new kidney by the end of 2017.

I’m very tempted to take some bets on this… We are all doing what we can to facilitate the process. Watch this space, it will probably start getting more interesting from now on as we approach the end of the year. I do hope you are all well, and I leave you with this thought”  If you are not feeling well, physically, mentally or emotionally, address it immediately, it could save you an enormous amount of grief later on. 29 degrees in Johannesburg today, everyone is emerging out of hibernation and the scent of summer is glorious. Speak soon, Love Di and kids.xxx

xxxx

Interesting Times….

Where are we….3 weeks later? A pre-transplant patient has to have some skills… they can be developed: Patience, perseverance, self-control and definitely an ability to be grateful for what others can do for you, that you are unable to do yourself. By the grace of God, I have a wonderful transplant co-ordinator who will help me cross the line, but even she gets frustrated with the red-tape and endless documentation and tests required.

The latest bit of excitement is my medical aid, which, at a critical time, has refused authorisation for M’s tests. I did mention to one of their staff members that I might die before they get their house in order… anyway, we are resubmitting the request for authorisation and awaiting their review of the case.

So that I am not held up any more (I have been waiting to start this process since APRIL 2017), I have instructed the transplant centre to go ahead with the first few tests M (my potential donor) requires, and I will sort out authorisation for him with the medical aid. I guess you have a choice, whatever you are faced with: Accept  or fight….

My authorisation has been approved, so I will be doing a number of tests to establish I am fit enough for desensitisation and the subsequent transplant. I have completed the chest x-ray, (cleared), heart check-up (all good) and will knock the rest of the tests on the head in the next few weeks. The most exciting part, (just a hint of sarcasm) is submitting all the final documentation (should we both be good to go) to the Department of Health, who have to give their permission for me to have a transplant… No comment.

Anyway, onwards and upwards, giving up at any stage is not an option. If M is not suitable for whatever reason, I will find someone else and start the process again as I would like to age disgracefully!!! Have a good day all of you and meet your challenges head on, it’s quite satisfying squashing them!

Desensitization

Time is flying by and things are finally starting to move forward. The transplant unit has received my potential donor’s HLA tissue typing results (tissue typing) and are awaiting my Luminex results (level of antibodies). Naturally we wont match, but I guess this is a starting point and they have to establish if they can manage my body to accept M’s kidney. (Desensitization process)

I have been desensitized in a sense already, from experiencing far too many sudden deaths, people in terrible pain, depression, infection, and fear as a daily experience, and that’s not including my own issues, so bring it on, let’s see what I still have to deal with to get a transplant…

I have also witnessed miracles, where people, against all odds, have survived and are now living fruitful, happy, healthy lives.  Why have I survived so long with a horrible illness when so many around me; good, kind, people have perished?  Well, firstly, a good medical aid. Secondly, excellent medical staff, my maverick doctor, Roger and his team couldn’t be more dedicated, thirdly, my family, friends and even peripheral folk, who will me on to survive, fourthly, a good mental attitude from me and an iron determination to live life as much as I can.

We are often required to deal with things we don’t want to in all facets of life, so: face them, accept them, deal with them as much as you can, and move on!

Looking forward to summer, I swear I can smell jasmine in the air already! Until next time.  Love Di and kids xxxx.

18th July 2017

Well, today is Mandela Day and we celebrate a man with an undefeatable spirit, one we can learn much from. It is also the 2^nd anniversary of my mother’s passing. She had a kidney transplant which enabled her to enjoy 28 years more of life. My beautiful dog, Poppet also passed away this day a year ago. She taught me much about love, faith, loyalty and intuition. It nearly broke my heart when she died suddenly.

Today, my bloods have been sent off for testing in an attempt to now match MY body to a DONOR’S, not the other way around. I guess, to find a starting point, my potential donor M., went for an HLA test last week, and my blood has been sent for a Luminex test. Don’t know what these are, even after reading about them, something about antibodies. We know we will not match, so not sure where we go to from there but we have to wait 30 days for the results. Patience, perserverance, and being positive are all essential for my survival now. I always remind myself that there are millions of people who are in a far worse position than me… it puts things in perspective. Have a lovely Mandela Day and let us try and embrace freedom, kindness and dignity. With love, Di, Legh, Kit and Dave.  xxxx   #ThePlatterProject