Catherine on haemo in the late ’90s.
Yesterday was the 20th anniversary of my kidney transplant. Seems an age ago that I was on haemodialysis and on the transplant list.
When I was a final year undergrad writing my thesis, I noticed something was wrong. I was told that I had ESKD after a visit to a specialist. When my kidneys failed, I had to make changes to the way I lived in order to remain as healthy as possible. First I was put on peritoneal dialysis – preferable for young adults on the go. But what I didn’t know was that I had a hole in my diaphragm. Cue pneumonia! Oh dear. So the alternative was haemodialysis. The first fistula didn’t work so I had a vein taken out of my leg to be put in my arm. What people don’t tell you is that the arterial blood rushing through the fistula creates a buzzing sensation that makes it hard for some people to sleep. Luckily I didn’t have this problem. I went 3 times a week to the Berwick dialysis centre (Berwick is an outer suburb in SE Melbourne) by train for 4 hours of dialysis. I got my first job (part time) while on dialysis. It was a technicians job at the Ian Potter Art Conservation Centre. I also got a temporary job doing a condition report on the children’s book collection in the Rare Books dept of the University of Melbourne library. I had to be careful lifting and moving items because I was a bleeder. I needed special pressure bandages to stop the bleeding after dialysis. Once I took a bandage off too soon. I won’t say what happened – luckily I was at home at the time!
The changes I had to make to my life were mainly dietary. Low protein low salt low phosphorous diet and a bag of sweets every other day for energy. I couldn’t cope with peritoneal diet – loads of protein. I just couldn’t do it. The other was managing my life so I wasn’t totally exhausted by the end of each day. And of course, managing how much I drank. When your urinary output is nil, monitoring how much you drink is an essential factor.
My Mum got the call around midnight or 2am – can’t remember – so she had to wake me up and get me functioning enough to zip through to hospital. It was very exciting and nerve wracking. As soon as the kidney went in, everything started working at once. I hadn’t menstruated for over 2 years or passed urine (so my muscles were very unfit – heh!). It was a bit embarrassing as I hadn’t brought any feminine supplies. Walking was hard at first because the kidney was so HEAVY! Something I didn’t expect.
From daily to weekly visits after discharge, I now visit outpatients once every 6 to 8 weeks. I’m not on a lot of medication which is great and I’m in goodish health. I had a clinic visit last Monday and it was just a matter of time until I saw a clinician that I helped earlier at my place of work. That’s the main reason why I don’t get seen at the hospital where I work – to try to limit this sort of encounter from occurring.
So what does having a kidney transplant mean to me? It means freedom to live to my fullest potential professionally and personally. I can travel, work full time, have a sexual relationship, eat what I like (within reason of course!), go overseas, and have time to explore, to discover and relax. I celebrate my kidney’s birthday every year because I am privileged to have it and without it, I wouldn’t have the life I have today.
PS having a medical condition was not the deciding factor in going for medical librarianship – just so you know 😉
Last weekend, I had a very interesting Twitter conversation with Dr Jen Gunter, author of a well-read EBM blog about issues in ob/gyn. And I have to say I was mighty chuffed too when she asked for my opinion about this journal: Issues in Law and Medicine. After doing some investigating and digging around, it appears that one of the co-publishers is aligned with the American Right To Life organisation. Both co-publishers, the National Legal Center for the Medically Dependent & Disabled (U.S.) and the Horatio R. Storer Foundation, do not have websites as far as I can tell (please inform me if you find anything). This seems iffy – what publisher doesn’t want to publicise their offerings? You have to access the journal to find contact information and access is only available if you are a member of a organisation that has a journal subscription or a subscription to a full text database that includes the journal. I looked up the journal today and discovered that the chief editor is someone with a divinity degree. The referees include people from pro-life institutions such as the Lindeboom Institute and Christian ethicists and as well as that, includes a referee who is also a author of an article in one of the latest issues. The journal states that it peer-reviewed but that doesn’t mean anything much these days. Journal article submissions seem to fall under general correspondence. Dr Jen asks: should an anti-choice journal be indexed by Medline? Everyone is biased in some degree – it is impossible not to be unbiased about everything. My first thought was that there shouldn’t be censorship. Having said that though, databases including Medline have to operate within its stated scope. If it falls with scope and the content isn’t covered well, then it should be included (this is part of the journal inclusion criteria). Libraries aim to present all views as fairly as possible. But if it is well-covered by more scholarly fair-reasoned content, poorer content should be removed. This is not the only problem with this journal though. In the latest issue, there is an article bringing up the non-issue of vaccines causign autism, resulting in a outraged PubMed Commons comment. A major part of the journal inclusion criteria is Quality of editorial work. This includes retraction where appropriate (that anti-vaxxer article is one that is up for retraction), opportunity for dissenting opinion and as part of good publisher business practice, conflict of interest disclosures and editorial independence. This journal does not publicise it’s ties with the Right to Lief organisation and only implies it’s pro-life stance (the credentials of it’s editors and referees). This isn’t the end of the matter either. As PubMed is accessible by the general public, care and consideration needs to be taken about what sort of information should be indexed. The NLM should take steps to ensure it is not used as a political tool and including anti-choice articles thinly disguised as scholarly discourse in Christian ethics is an ethical issue in itself.
Next week I am going to be doing a short course in Oxford at CEBM called ‘Teaching Evidence Based Medicine’. I’ve just got the timetable today and it is going to be intense! Class starts at 8.30am and finishes at 6.30pm. My husband and I are staying in the centre of Oxford so it will be an early breakfast for me and a 20min walk to St Hughs. I plan to write some posts about what I learn but it looks like I might be pushed for time in the evenings. On Wednesday there is the group dinner at the college which starts at 7.30pm after a faculty Q&A. Perhaps there will be enough time to nip up to the B&B and collect my husband, who knows? We made a reservation at Jamie Oliver’s in Oxford for 7pm (I think) on Tuesday. I’m wondering how I can fit everything in … You can tell I am feeling rushed already! I’ve done the reading bar one editorial and all I have to do now is write out a lesson plan for critical appraisal (I already have one, just have to fix it up a bit). I guess we will be working ons during group study times. However, I’m hoping it will be a worthwhile course. According to the timetable, we will be learning different teaching methods for different aspects of EBM – diagnostics, statistics, SRs, and even searching (which will be interesting as it is a how to teach search methods). I was talking to someone from Cochrane about the course earlier this year and he knew someone who had done it and was impressed. He said it was geared more for clinicians though but that could be a plus as us medical librarians are supposed to be teaching this audience.
It has been all change at work. Not only are we merging with another library, but the Clinicians Health Channel changed resource providers from EBSCOHost to OVID (which I’ve not used much before) last week. We are losing CINAHL. So instead of a quiet time before leaving, I have to grapple with searches using the new interface. Fun times!