100,000 Mile Overhall is now complete!

I had been due to return to work in January, after having a laparascopic nephrectomy in October.   The issue with my heart that caused the cancellation of the first operation, was due to be rescheduled for sometime in the next three months.  I had a return to work date, and then suddenly Cardiology called and was going to be done on the 20th January, which moved my return to work date to the 22nd January.

I was on the table for the Cardiac Ablation for 5 hours, and I think I had 2 or maybe all 3 of the specialists that can do this, involved in my procedure, this specialists are the only ones in Nova Scotia, possibly in the Maritimes, so I was in good hands.  They kept checking if I was doing  well, and would give you more drugs if they felt you needed them.  All three Drs came by to see me, and confirmed that it was successful, and said that if I did decide to go back to the hotel, to make sure to come back and see them in the morning for a final check. Soon after they left my heart started racing again, I asked a nurse with 33 years service if that was normal, and she said yes, that I would carry on taking my drugs for three months and then get weaned off them.  This I was unaware of.  Next morning I went to see the Dr that had requested to see me, and I had an ECG done before he arrived, and my heart was in a race.  Apparently, when they fix a tachychardia, it is fixed, no more drugs it is instant.. and if they had known they would not have allowed my discharge..

So there I was so close to going home, and my husband went home on his own while I waited for them to find me a bed in Cardiology. That took some 6 hours – however as soon as I got to my room, a Dr came by with the result of my followup scan that was done the week before, which was clear, no change on the lesions on the Right Liver, which is what I wanted to hear. The next day the additional tests started, an Echo that was called a TEE, which involved a tube down to my stomach to take a closup of the heart, and then the next day an MRI to make sure that a fuzziness around my left eye was not a clot from the Ablation.  For me, to have the brain MRI also cleared any worry about the Kidney Cancer, and possiblity of Brain Mets, every headache is not a brain tumour, and this is very true.

I then waited until Tuesday, which was the first spot in the schedule they could fit me in. They checked the groin entry points from the week before, and thought they could hear some awry, and sent me for an Ultrasound to check for Fistula or an Aneurysm, and was quite a relief that it all proved to be fine. They thought this would be a quick 3 hours, go back in and fix it properly, but I still proved a challenge, and it took then over 5 hours.  I had so much Heparin that they had difficulty gettinging the entrance points in the groin to stop bleeding. That issue meant they kept me lying down for 4 hours before being able to lift my head, and be able to eat for the first time in the day.

My husband came to collect me once they gave the heads up that they have fixed it this time.  However they were all very clear that this can come back, but for now I am drug fee, apart from the aspirin to think my blood while my heart is healing itself.

So from having a racing heart diagnozed as PSVT, to finding a kidney tumour and having that removed, and then having excellent results from my followup scans and then the MRI, and now finally getting the atrial tachychardia fixed, once my energy returns, I will feel like a new woman… truly a 100,000 mile overhall.

Posted under Gemma A S.

This post was written by Gemma A.S. on January 29, 2009

The Battle Against Snake-Oil………….

As I cast my mind back to March 2007 after the nephrectomy I cant help remembering what was on my mind as I surfed round the internet; you know the thing, that mad sense that “there must be a miracle out there” that somebody is hiding under a rock.

As you look at how people find there way onto KCR for example you can see that they are pretty much doing the same thing. They put a search into google and then hop onto KCR, read whatever they want and then hop off again onto the next search result.

Now you’d think that with all the information stored on KCR that there would be no need to hop off elsewhere.  Yeah, yeah I know it’s probably a tad arrogant to assume that we’ve locked down all the info available :) but to be honest it is safe to assume that we’ve nailed enough information to make the site “sticky”….. I’m glad to say that the regular readership is growing, however capturing the site hopers would be fantastic.

So why do they hop off?

When the decision to create KCR came in 2007 it dawned on me that the site hoping is something that people just do in desperation to find the “miracle”.  I did it, I surfed and surfed ignoring all the sites that said “there is no miracle” until I found sites that said “here it is, buy ya snake oil here!”  Instinctively I didn’t want to believe the harsher facts, I wanted to believe that there was some more comforting solution.

And there’s the danger. Yes, I’m sure it is safe to say that there are people out there who’ve had “miracle” results by standing on their head’s  sucking Goji Berry wine through a shark’s cartilage straw that’s been soaked in esiac tea strained through apricot kernels. However the reality is that many of these have no medical backing or efficacy and are massive hearsay outlier examples, it’s just a cruel way of extracting money from people when fear gets the better of them.

I’d love to work towards putting a stop to these snake oil salespeople.  The challenge on KCR is to bring all these supposed cures onto the website so they are listed and well understood, giving people a genuine reference.  Having said that, giving these cures any space on any site can often just advertise them even more …. And this is where we need a balance.

One of the reasons I’ve asked for Feedback for KCR on the new Kidney Cancer Support Network forum is to see how other folks believe we should deal with this kind of data, how’s it best displayed? How do we keep it up to date?  Yes, I’ve been given the FDA’s list of known fake cures, but there’s more out there and we need better explanations.

Posted under Andy Thomas, General

This post was written by AndyThomas on January 13, 2009

A New Start to 2009 …….

It’s been quite a while since I wrote my last blog, but to be frank there hasn’t been that much to shout  about, and with this wretched credit crunch my mind has been somewhat focused elsewhere.

So whilst we’re all sitting here at work waiting to see if we have jobs at the end of the week or not I thought I’d put my fingers to the keyboard and see what comes out.

Out of this financial gloom something exciting has happened in the last week.  As of now there is a fully blown Kidney Cancer Support Network web-site which includes a large map of the UK showing us where people are, plus there’s a new forum to bring people together and where we can share our experiences and views.

Since the James Whale Fund closed their forum down there hasn’t really been anywhere to go that’s genuinely active and patient lead, but I was so heartened to see that they’ve put so much effort into making Rose’s dream a reality.

What we have now are groups working cooperatively, with the James Whale Fund, the Kidney Cancer Support Network and the Kidney Cancer Resource all helping each other and all focusing on different core areas.  Those core areas being Funding and Awareness, Patient Support, and finally, Information provision.

I do believe that since the N.I.C.E. demonstration back in the Autumn of last year there has been a change, it showed that people coming together like that can make a difference.  Thanks has to go to Clive and Jan Stone for making this happen.

Clearly I’ll be putting up a more formal announcement on KCR to celebrate the opening of the Kidney Cancer Support Network.

I’m looking forward to the coming months and seeing this all come together. 

Nice one Rose and lets hope that the NICE decision on Wednesday of this week is the one we’ve all been waiting for.

Posted under Andy Thomas, General

This post was written by AndyThomas on January 12, 2009