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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

My Birthday in 2 days

06/07/2010 22:09
My Birthday is in 2 days and yet it no longer feels as special as my new birthday, March 3rd the day I got my new lungs.

Cap a L'aigle

06/07/2010 21:58
We are now in Cap a L'aigle a small port near the town of  La Malbaie, we did not think to stop here but after a day of fighting the currents and anchoring last night at 23:30 and getting a restless sleep we decided to stop. This morning was chilly with thick fog and the ominous horn blasts of a laker we could not see until less than a miles away.  It did clear up long enough in the afternoon for us to see a pod of Beluga whales. Tomorrow we haed for Tadouasac and will hopefully meet up with our friend Jim and his boat HOBO 2

Salaberry De-Valley Field, Quebec

01/07/2010 19:10
We arrived In Salaberry De-Valley Field on June 30th, and we have been welcomed extremely well, we have met some of the nicest people on our trip and they have given us a free night stay at the Valley Field marina along with each a complimentry drink at the bar, I would highly recommend stopping in here if you are passing by.     The town although not much going on today for Canada day is preparing for a large outdoor concert in the park across the docking channel from us and boats are starting to arrive.  We do wish we could be staying a bit longer as everyone is so...

Kingston ON

27/06/2010 20:33
We departed Whitby ON near Toronto May 26th at 5:45 am and after 120 miles arrived in Kingston ON at 10:25 am this morning May 27th after sailing non stop for 28 hours and 20 minutes. We docked at the Portsmouth Marina but 2 hours later departed for the public marina in downtown Kingston. We then went to the marine store and then for some food and now sit on deck in a light rain enjoying the sound of a girl playing bagpipes in the park across the way.

Toronto 1200 miles

22/06/2010 19:59
Arrived in Toronto on June 16th, after a great trip so far with some of the best and some of the worst sailing weather i've ever seen. Weve encountered 30 knot winds and 3 meter swells and we've also had times of dead wind and even a thunderstorm or 2. Made a few friends along the way and have been keeping up with our friend on his way to New Foundland and hoping to catch up with him on the St. Lawrence. Its been great staying in Toronto for the week and getting some well needed rest and a bit of logistic work done but it will be good to be underway which should be by the end of the week....

In Tobermoray

02/06/2010 12:34
I'm now in Tobermoray and have posted the Blind River To Killarney Blog that i wrote back in Killarney but was unable to post until now due to no internet service. I hope to get the second post written from Killarney to Here today. As we are here for the day due to bad weather.

In Blind River

21/05/2010 13:10
New trip Log entered of the first leg of the journey check it out in the Trip Log section, pictures will be posted as soon as I have more time.

In Thunder bay

08/05/2010 19:01
I left Winnipeg on May 2nd, and drove out to Thunder bay, where I am currently living in a boat yard, and constantly working on the boat to get her ready for the voyage.  I have posted a new trip log, but will only be able to post pictures in a few days.

3 days until departure

29/04/2010 14:27
Only 3 days left until I depart Manitoba, I am left with a few last minute preparations before I leave. Yesterday I purchased my new camera for the trip and have been playing with it so that I can use it easily when the time comes, I have fully moved out of my apartment and currently staying at my buddy Jeff's until I depart.

Off to ThunderBay

11/04/2010 00:16
Heading to ThunderBay in the morning to bring some supplies to the boat and to make sure it has faired well through the winter, it will be a quick trip there and back. Also if you are following my trip and think you could help me in anyway much appreciated, still needing plenty of charts for the lakes along with finding free dockage as much as possible.
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