7th week medical update (11th May)
by Mee-Yan, Friday May 13th 2011
What can I say? Since the 4th week update, there have been lots of ups and downs that continue to test my ability to persevere. There has been so much going on, I was not able to do the 6th week update. Apologies!
First of all, let me report some of the “down/tough” moments in the last three weeks (even though they have all now been resolved).
1. I have had an infection for over two weeks – with a tight chest and sometimes shortness of breath, a bad cough, sore throats, runny nose….etc. As I shared before, any infection at this early stage is bad news for transplant patients. So I was put on antibiotics. After a week, most of the symptoms were slowly disappearing. But the challenging news is that from now on, according to the team, any infection I have will take up to 4 months to clear even after it is “arrested”, because of the low count of white blood cells.
2. Last week, the team phoned me to say that my last blood test showed my creatinine levels had gone up and would I go back for further blood tests to check what was going on. An abnormal creatinine level is the most vital sign of the new kidney being rejected. My heart skipped a few beats. I went back for further blood tests, and at first they asked me to stay and wait for the result. I asked why? They said in case they needed to put me back in the transplant unit and put a drip in me. (NO, please!!) But since the wait was too long, I was finally allowed to go home and thank goodness when the doctor phoned few hours later, he reported that the creatinine level had dropped a bit, and they would let me have a good weekend and without bringing me back to the hospital. (Hurray!!) Since then I have had one more blood test and the creatinine level has gone back down. Such a relief.
3. The third blip was on Sunday when I found quite a lot of blood in my urine – another scary thing as it may be caused by internal bleeding. I phoned the hospital as Stuart was away for the weekend attending his university reunion. But they asked me to drink lots of water to see whether that would clear it. I forced down 2 litres of water and it cleared. (Mystery?)
4. The fourth blip was that the anti-rejection drugs marking is now too high – meaning it has reached its toxic level (and will be toxic to the kidney). The consultant, having read the markings in two rounds of blood tests, immediately lowered the dose that I have to take.
5. The final news is that this Friday (13th May) I will have minor surgery to remove two stents from the joint between the new kidney and the bladder. It should be a simple operation; the minor risk is internal bleeding which would mean staying in the hospital. Let’s hope that it will stay as a day surgery. (Think positive thoughts…)
The above four blips managed to sap my physical energy so much that I have to revert back to being Mrs Bennett. It was frustrating for me, but in the bigger scheme of things, I have to remind myself that after all they are just part and parcel of this recovery journey.
I must admit that these blips have been scary, but my emotional insecurity reminded me to adjust my expectations once again. With a major invasive surgery plus a daily heavy intervention of drugs, these blips are bound to be an inherent part of the journey. I should expect them to happen and I should also have the trust that with the transplant team being so vigilant I will be well cared for. Whatever blips come my way, hopefully there will always be a way out. Even if the worst happens, I am sure I will be given the strength to face it.
Yesterday I was so inspired by a good friend of mine whose husband is going through a transplant that carries a much higher risk. We have been texting each other to support one another in the past few weeks. In the beginning everything looked good with the transplant and the medical team was pleased with his result. And then the blood count started dropping and it looks like the grafting has not been successful. They are now waiting for the verdict this weekend. She described her experience in the following vivid way (not an exact quote), which is very helpful because when she captured her experience, she captured mine also: “Mee Yan, as you know the whole experience is like being in a unfamiliar country going down an unfamiliar road; at first the terrain looks good and manageable but then all of a sudden the manageable terrain stops and you come face to face with a sheer rock face and a great chasm. It is important in such circumstances to retain a sense of proportion and a sense of optimism – even though I found it very hard to do.” How true and applicable that is to all life circumstances as we face constant changes in our lives. My take away from my friend’s sentiment is that our mental model matters – it will either keep us going or make us collapse in a heap, even though the latter is inevitable in this type of situation.
Second, it is important in a time like this that I do not forget what is good in my life. I would like to count my blessings with you, as they are all are very encouraging to me and my family:
1. Since my consultant told me to get out of bed, I have been walking 4 times a week – each for 45 minutes to an hour, even during the weeks when I have had the infection. Some days it was a challenge, but most days I enjoyed myself and felt proud of myself. The most helpful factor is Rebekah who has determined that, instead of walking the dogs, she will walk mum. After all, having a bullying child sometimes has some advantages.
2. Despite the blip of rising creatinine, all the vital trends show that Gilbert (the name of my new kidney) is snuggling well inside me. This Monday, my own renal consultant of 15 years told me – “while life can continue to be precarious, overall I declare the transplant is a success.” (So, so grateful!)
3. The post transplant clinic team continue to be excellent; they watch over every blood test and call me at home if something is not right. They make me feel very secure as they do not let anything slip through their fingers. (In this intensive cost cutting time, the core (heart) of the NHS is still fulfilling their vital call to heal – and for that, all of us should be very grateful.) Then as I go to more clinics, I get to meet more of the personnel; I have found them amazing. One particular nurse is so funny and reassuring that I manage to always leave her clinic laughing. When I told her Stuart is a bit fed up with me in tears all the time she said, “tell him he should be grateful that he is not the husband of my other transplant patient, who has turned from a mild and meek woman to such an irritable person that one day when her husband did not do the ironing right, she threw the iron at her husband.” When I told Stuart this, he said “thank goodness in 29 years, I have never seen you use an iron ever!!!” (Oops! The secret is out about what a domestic goddess I am NOT!)
4. I was allowed to drive for the first time last week (after a 6th week ban) and that is great because I now can venture out by myself. Not that I have actually done it yet, but just having the thought liberated me. Thinking possibility thoughts can change our mood (as all the Appreciative Inquiry colleagues will tell us).
5. I have eaten out twice now, once on 7th May – a birthday breakfast for Stuart, and the second time yesterday (10th May) as I can no longer bear not having Thai food – especially the soup and Pad Thai. This was permitted by my consultant who said it was fine as long as I told the restaurant to cook the food thoroughly. This again is so wonderful.
6. Talking about food, I now have managed to eat most of the foodstuffs that have been forbidden to me for over 3 years – peanut butter (I love a peanut butter and jelly sandwich, don’t you? As I am part American!!), avocado, prawns, lobsters, oranges, cheese, eggs, milk…..the list goes on. So the song that Ruth and Rebekah made up for me on the night of admission is coming true. I am a true Chinese (Asian) who live because of food (as opposed to the Brits who eat in order to live). Diversity of culture!!!
7. I also managed to summon sufficient energy to tackle my study which has not been “dealt with” for over 10 years with obsolete books and paper jamming every corner. I gave Oxfam close to 200 novels and another institution over 200 books; I sorted 3 boxes of reusable paper and took another 4 boxes of paper to the recycling bin. I am only 60 % done but I imagine there is nothing more liberating than de-cluttering our “jammed packed” life – material wise, time wise, commitment wise. Clearing the study and enjoying time under the duvet are symbolic of my effort to de-clutter my jammed packed life. For those of you who can keep your study up-to-date and tidy, would you give us some tips as to what we need to do in order to keep our messy study in order?
8. Finally, my consultant told me I can ease back into work from June on as long as it is not to a packed Monday to Friday diary. So with this permission, I am slowly going to do things. He also said I can most probably fly from autumn on as long as the blood results stay in the same trend.
9. The good news is that Alix is well enough to leave Basal to fly to Rome to celebrate her mother’s birthday in Florence. She is growing in strength. I am so, so pleased for her. It looks like she will be well enough to take a round the world trip to mark her husband’s retirement in July. This is all good news.
10. My family continue to tolerate my moodiness – a dominant side effect from the few anti-rejection drugs that I will have to take for life. I am worry that these side effects will continue and not lessen as time passes. (But better not to pile worries upon future fear – as my friend said – must keep things in perspective.)
So all of the above is great news, and I am very thankful for the goodness that I have experienced. I will do one more medical update and then hopefully life will be back to normal.
Final Reflection – the “I” and “we” and “us” – the intertwining of people
During this recovery period, I have been blessed by so many of you who sent me lovely cards and flowers. I been blessed by a group of loving women who set up a rota to take turns to cook for my family and me, and who regularly drop by whether I want to see them or not; I am blessed by Rebekah’s godmother who comes to cook yummy Chinese food for us once a week despite her busy schedule; I am blessed by my own family who take great care of me, including my extended family, e.g. two of my nieces parked their 5 children with someone else and came to Oxford with bags of groceries and did couple of hours of marathon cooking and managed to fill my freezer; another niece sent me the whole series of “Brothers and Sisters”, and my nephew sent me “The Wire” (which should I get stuck in to first – family complex dynamics or scary 18 rated stuff?) Thanks to them and other friends who loan me endless DVDs I now have sufficient entertainment for the rest of the year. The continuous support of friends from near and far has touched my spirit deeply, and I am grateful to my staff and a colleague who keep the business running while I am watching house programmes. Finally I am grateful for the continuous tolerance of those good friends who keep phoning, texting and emailing without hearing back from me as they have accepted that I need to remain in my deeply introverted zone. Of course what else can I say about Alix’s sacrificial giving of her own kidney in order to give me a new lease of life? These are the people who understand the connectedness of humanity and chose to put their needs aside in order to cater for other needs.
Paul, (who has a tough external shell but a warm, soft and fuzzy inner being), a graduate from the NTL OD certificate programme once sent me a lovely quote about “Proper selfishness”. It is from Charles Handy – one of the best known international British scholars and academics in the business and organisation field that the UK has produced (he was Ed Schein’s student) and who also happens to be a deeply spiritual person (I understand he is an elder of his local church). His quote was hard to digest and it took me awhile to get what he means:
“That I term a “proper selfishness” builds on this fact that we are inevitably intertwined with others, even if sometimes we wish that we weren’t, but accepts that it is proper to be concerned with ourselves and a search for who we really are, because that search should lead us to realise that self-respect, in the end, only comes from responsibility, responsibility for other people and other things. Proper selfishness is not escapism. Paradoxically, as I have suggested, we only really find ourselves when we lose ourselves in something beyond ourselves, be it our love for someone, our pursuit of a cause or vocation, or our commitment to a group or an institution. Forced to be selfish by the changes in the world around us, we have the choice to make it proper. If more of us so choose, we can make the systems work for us rather than the other way round.” (Hungry Spirit, 1977:87)
The four key points I managed to get out from Handy’s quote are:
1. It is right to be concerned with ourselves and a search for who we really are – an important journey for all
2. But that search of self often involves the fact that we are inevitably intertwined with others; that without others, we would not find ourselves. This search will also lead us to understand the importance of responsibility to others, to important causes, to purpose and calling.
3. The paradox is when we start off being selfish wanting to find out who we are, we end up losing ourselves in something, someone beyond ourselves. When that happens, we find who we are meant to be.
4. To sum up the paradox Handy points out – without being intertwined with others, we may never find out who we are. By finding who we are, we end up losing ourselves in something bigger – “beyond ourselves”.
This quote and the thoughts behind it require time to digest and contemplate as they are “deep” thoughts.
Stimulated by his thought of this intertwined-ness, I have come to the conclusion that no experience is wasted. Every situation you and I go through will help other onlookers to use our experiences as part of their search for who they are. Yours and my life stories, particularly sufferings and trials are all part of community events – as they help others to give beyond their capacity in order to reach out to us whose experience may provoke their sense of compassion. The platform we build through our life journey enable others to stand and evaluate their own situation and be reflective about the bigger pictures questions – who am I? What purpose do I have in this life? If I were to put through what they were put through, what would I do?…by contemplating these bigger questions as an onlooker, our intertwined-ness and our connectedness will eventually bear fruits enhancing each other to understand who we are, what is ultimately important to us, what provokes us to give so selflessly, and what are our growth points.
My personal growth definitely happened in this way. I was touched by so many other people’s experiences (particularly their sufferings and trials), compelled to reach out to them and find ways to support them. By giving myself up I found a side of me that I never knew existed. On top of that, I can also testify that the becoming of my “I” was through my connection with so many significant others in my life, especially through belonging to many amazing women’s groups, having amazing mentors, psychotherapists, and having great precious friends. As the “I” grew in the circle of strong “we”, the “we” grew and multiplied; at the end a strong “us” community emerged to surround me – virtually. This community continued to command me to take more responsibility to help preserve and support those in the community, and through that I found my calling and my purpose in life.
A recent piece of interchange between a good friend of mine and me may help to illustrate what Handy meant. One day when I thanked my friend profusely for all the wonderful care she has shown to me, Stuart, and my two girls, she insisted in stopping me mid sentence. She looked at me with those big eyes and said, “as you open the door and allow me to watch what you are going through and to watch your responses (both high and low) to the various tough spells, I feel blessed and I grow significantly” And yet I am the one who experienced her generous giving to me and are deeply touched by her giving of herself to support our family. This interchange left me humbled as often when we think we have nothing to offer to the world because we are deep in our struggles, somehow others in the community are ready to plug into our lives and use the backdrop of our experiences to evaluate who they are, what is important to them, and how they can build physical and spiritual resilience in case they have to go through similar tough patches in the future. The awesome thought that springs from this is that no human experience will be wasted if we allow the “I” to relate to others – the “we”. We may even through our struggles and pain help to build a strong “us-community” which in turn will support the search and growth of the “I”. I believe this is what the intertwined-ness of people around us is supposed to work out, and I also wonder whether this is what Handy meant when he coined the term “proper selfishness”. If Handy is right, then the POKER FACE Asian and the STIFF UPPER LIP British sense of privacy and self sufficiency will stand in the way of the proper working out of our deep human connection from I to We to US.
Finally since the term “proper selfishness” carries a myriad of complex meaning which can be confusing to people, I am attempting to try an alternative label that may convey more clearly what he means. But being a non English user, plus being a woolly thinking social scientist, you may have to put up with this longer and clumsier alternative. The alternative to “proper selfishness” is – “when “I” become a connected “we” and when “we” become a strong “us”, the strong “us” will nurture the “I” to become an ever evolving growing self.” This may be clumsy, but does it make me sound like a philosopher? My ultimate aim!!! May we continue to allow others to plug into our own experiences: that is how the interconnectedness works to support each other’s growth so that we can be all we are meant to be.
I hope you continue to enjoy this sunny spring.