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Goingbeyond

E-mail: carlb3z@hotmail.com

Published in Circle Of Friends magazine October 2010

www.cysticfibrosis.ca/assets/files/pdf/CircleOfFriends_Fall2010E.pdf

 

 

Detour

I call this entry a detour because it has totally changed the next year of my life. We had planned on departing Miscou island New Brunswick on June 7th at midnight, heading for the madeleine islands and onwards toward Newfoundland where we would have spent some time in the company of some family of a friend of mine before heading across towards the Azores, and our 9 to 11 month journey around the north Atlantic.

 Yet that has all changed as I noticed my cardio capacity had decreased over the weekend, Monday morning June 6th  I decided to get myself checked out. Off to the doctor I went expecting to be back that evening yet that was not the case. Upon arrival the hospital the usual tests were done blood work X rays and a Lung Function test. My sugars seemed a bit high, and mostly my lung functions had dropped.

Then came the news that struck hard the doctor wanted to admit me, so after a few minutes of what if's and denial I said ok. That first night was extremely difficult my mind racing with questions and anxiety. With nothing more than the clothes on my back i spent the next 2 days in Bathurst hospital. The morning of the 8th after having done numerous tests they decided i was better off being transferred to Saint John where my specialist was able to perform some tests and get treatment that would have otherwise been more difficult in Bathurst.

 They transferred me to Saint John; Luckily I was able to get a spare set of clothes from my brother before I left quite unexpectedly. Arriving in Saint John by ambulance I was transferred and setup in an isolation room as I was flagged as MRSA (multi Resistant staphylococcus aeureus) a bug that is pretty much anywhere but if you have it you are put into isolation. I know that I do not have it and never have but it is an old paper in my chart from back in 2005 when I was in Montreal hospital and had one out of 3 tests come back positive. My results have never been positive and only here in New Brunswick have they ever made it a big deal.

So with that I was confined to my small room with nurses mostly only coming and going to give me my meds and care, as they were required to suit up (masks gloves and gowns) before entering. So for the first week I was not able to associate with anyone very much. I mostly sat in my room thinking about the outcome of all that was going on; I have to say it was almost as scary as the day I went for my lung transplant, the differences being that at least then I knew what to expect.

I then had to have a scope done to verify my lungs, this was dreadful as I have had this procedure done before and it is not comfortable getting a tube down into your lungs, along with them wanting to flush out your lungs in order to remove any mucus and be able to see if there is any infection. Although this time was much easier than last, My experience was pretty much a total opposite, I was not put to sleep but made semi unconscious of the whole experience and barely remember a thing, this being unlike the last time this was done in Montreal where I was fully awake and felt like I was drowning as they flushed out my lungs. The results on the other hand were good, the doctor found no scarring or damage to my lungs.

By Monday a week in the hospital with a load of tests and blood work they placed me on antibiotics and a major dose of steroids concluding I was having a case of acute Rejection, which is kind of odd this far after having a lung transplant. This is usually treated with a higher dose of steroids and an increase in the immunosuppressive drugs, which is what they did. My doctors here in New Brunswick coordinating with my lung transplant team in Manitoba I felt fairly hopeful.

 Although still after 3 weeks my PFT's (Pulmonary Lung Function tests) have not changed much, although good in the fact they have not continued to drop. After a few days of needles and one morning having to have 11 needles unsuccessfully for an IV, I was sent to get a PICC (peripherally inserted central catheter) or central line put in my arm, as my Veins were not able to handle the IV's. A PICC is inserted in a peripheral vein, such as in the upper arm, and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava just above the heart. This worked well although at first I did not want to have it done.

The PICC did make it easier for me to leave the hospital between medications where I had 2 of my friends from Manitoba that came up and we would head out for walks and some food, this meant a lot as being cooped up in a small room was mentally straining. By the 3rd week I was not sleeping much and was finding myself awake when the sun came up, a side effect from the medication along with some stress I’m sure is the answer.

And then on Monday the 27th I was released from hospital with still no certain outcome on what is happening with my lungs, My PFT's still have no started to climb and I find myself very short of breath when doing any activities, there is still a chance they may improve but the doctors say there is a chance they might just stay where they are. I do know in order to get back to where I was, will take some time and a lot of effort.

So for now I am staying in Fredericton as it is the most convenient place for my doctors and I. I have regular tests to go through and fluctuating my steroids which may take a while to balance out. I have no idea yet what comes next for me and it is stressful to think about it, I do know that my health has to be a main concern and that without it not much else matters.

Thanks to everyone for their help and support I will keep you updated on my situation and feel free to email me or ask any questions.

 

To make a donation.

 
I encourage everyone to make a Donation, even if it is just a dollar as if everyone that visits this website donates at least a dollar they will add up, this money will go towards the Cystic Fibrosis Foundation in hopes of finding better ways to deal with CF, Thanks






 
 

This is through Paypal which is used by everyone on Ebay and most others on the net , I do not receive any of your information, If you do not have a paypal account no problem, then you can just continue without needing to sign up.

 Welcome

This site is presented as a chronicle of my experiences in the wake of my March 2009, double-lung transplant.  My second-life you might say.  It is dedicated to the memory of  Theresa Vibert (1960-2002).  I am proud to be her son.

Feel free to browse around, send me comments, sign the guest book.  Any feedback, be it positive or negative, is appreciated.

 

To learn more visit the About Me

Thank you

I would like to thank the following people or companies who have contributed or helped me in anyway.
 

Marina Valleyfield, We thank the staff for being very friendly and welcoming, along with a free night of dockage and complimentary drinks. I recommend anyone passing by Salaberry-de-Valleyfield to stop in, with a welcoming staff and a friendly community you might stop for an hour and end up spending 2 days, which is what happened to us. www.marinavalleyfield.com

 

Club Nautitque de Tadoussac, Thank you for the discount on our dockage it was much appreciated, we enjoyed our stay.


Cabelas Canada, for donating me my wonderful Cabelas guide wear weather gear so that I can stay dry in the worst of weather.

 

My sister , for my very nice waterproof neoprene boots, and her encouragement and support.

 

My brother, for always being there whenever I need anything, and helping me out with no hesitations or  questions asked.

 

Jeff ,  for the use of his truck and giving me a place to stay before I depart, and a long list of other things he has helped out with.

 

Douggie, Thanks for the shoes off your feet buddy. literally he gave me the shoes off his feet this guy did and there the best shoes ive ever worn man havent taken them off yet and they keep em dry too.

 

My doctor and transplant coordinator, For helping with my medication supply and organizing everything I needed medically.

 

My uncle for making this all possible.

 

 

News

Detour

01/07/2011 12:18
See main page for write up.

Setting Sail Soon

30/05/2011 22:55
We plan to be setting Sail on our way to Newfoundland In a week or slightly less.  I received all my medication needed thanks to the help of the Shoppers Drug Mart in Bathurst and their great staff.  I will write up a short log aboout things that have been going on in the last while and post it before we leave Ill include our expected voyage also, Stay tuned.

May Is Cystic Fibrosis Month

11/05/2011 08:39
I encourage people to take a look at the Cystic Fibrosis website to see what you can do to help raise awareness as May is CF month.  I am quite busy working from morning till evening on the sailboat in this cold and wet weather. I had caught a cold for a few days but after seeing the doctor and finding out it was not serious things proceeded as usual.  My biggest problem at the moment if finding a way to obtain all the medications needed for this trip, which I thought should not be as difficult as it is now.  My prescription program will only cover 3 months supply and so I am...

The Ice has melted

19/04/2011 10:53
Its now April and there is still so much to be done, it is becoming a stressful time and we should be underway by the first week of June. I added a simpler way of making donations and encourage people to take a look thanks.

Presentation

08/02/2011 15:03
UNB Presentation My 2 hour presentation yesterday, february 07 was successful, I beileve I did a good job and the students enjoyed it very much. I was glad to be able to reach more people and help them understand what living with CF is like. I am now hoping to do it again in the future,  To the students I thank you very much and hope to hear from you.

Published

16/01/2011 18:12
Published As some of you may already know my article was published in the Circle of friends magazine in October, Here is a link to view it online. www.cysticfibrosis.ca/assets/files/pdf/CircleOfFriends_Fall2010E.pdf

Winnipeg

17/08/2010 15:43
I am in Winnipeg getting a few things done and will, try and get a few updates done soon, the summer has been very busy and will hopefully start to become a bit more relaxed in the weeks to come.  I sent in my story to the CF foundation along with some pictures and will be getting it published in their article.  We have not yet started planning for next years trip but should begin as soon as the weather starts getting colder.

Miscou Island

18/07/2010 22:29
Well we have arrived at our destination, Miscou Island NB.  We arrived here at about 1800 this evening and were welcomed by a group of our family members at the dock.  It was a beautiful day of sailing, we had departed L'anse au Beaufils at 4 am and headed for Chandler inorder to get a pump out for our toilet.  We then departed there at 11am and headed across the Bay of Chaleur, With a 15 knot head wind and 1.5 meter swells with the occasional 3 meter  waves we had a great day of sailing without turning on our engine until we had passed under the bridge and started towards...

Gaspe

16/07/2010 12:16
Arrived in Gaspe July 15th, Should be departing Tomorrow heading across the Bay of Chaleur towards our final destination Miscou Island New Brunswick. Yesterday it had been exactly 2 months since this trip started and it seems Thunderbay is so far away now.  I look back at everything I have given away or left behind, owning now very little possessions now and wonder where it all goes from here.

Tadoussac

08/07/2010 15:46
Arrived in Tadoussac last night july 7th at 22:45 after a day of fog wind and rain, fog that I have never seen so thick before in my life mixed with a range of 15 to 25 knot winds, and a sort of wind vortex sucking up some water, im not sure if it fully classified as a waterspout as it was not that tall.  We did not get any rest or were able to eat some food throughout the day as we had to be on high alert.  Meeting the large ships in the fog without radar is not a great thing.  We passsed 2 at the same time one heading each way, it was erie to hear their horn blasts long...
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