Pegson In The Present . Com

Living in the Present…Aware of the Future…

Done for the Week…oh wait

So I have all my hospital appointments completed for the week…which is good because it means I can have a bit of fun with the remainder of the week without the worry of early morning trips to the hospital.

Now I had a blood test yesterday looking at everything and while much was the same when compared to previous blood tests one thing that stood out was my platelet level was low, not on the extreme low but low enough for their to be some concern in regards to the amount of bleeding that may occur when I have my wisdom teeth removed….

My doctor believes that unless my platelet level jumps through the roof in the next couple of weeks, I will need a transfusion after my surgery to help fend off against any complications regarding bleeding, considering any oral surgery is a big bleeder let alone in someone who has a low platelet count along with moderate liver disease.

I have finally finished my 3 weeks of treatment to get back on top of things in readying for my wisdom teeth surgery and also after developing a chest infection. I feel much healthier lung wise, but still feeling a bit crook in regards to just being run down…The treatment while it gets your lungs healthier it takes it out of ya in other aspects, especially fitness. Because I have been spending more time sitting around doing treatments when usually I would be doing exercise or even everyday things during that time.

Lol Just as Im writing this quick update I received a phone call informing me that I have an appointment now to see the Ear, nose and throat specialist regarding my nose bleeds….there goes my easy rest of the week…

I go back onto twice a week Pulmonary Rehab as of next week…and will be with a new group of oldies…should be interesting….

But that’s about it for this quick update I might do a video blogs tomorrow…but there isn’t much to talk about lately just the usual grind of everyday CF topics…

PeGsOn
Pegson1986@hotmail.com

October 14, 2009 Posted by | All Posts, Clinic Visits, Daily Rants | , , , , , | Leave a comment

My Long Arse not so Productive Day – Clinic/Rehab

My Long Arse not so Productive Day – Clinic/Rehab

So yesterday I had my Monthly Check up and I had already been on 2 weeks of nebs, So I was starting to feel better just a little worn down but that’s to be expected….Because its funny your treatment makes your lungs healthy but also leaves you worn out afterwards…

So Not only did I have my appointment yesterday, before that I had Pulmonary Rehab so I was going to be up at the hospital from 10 am in the morning…So either way, it was going to be a long day since Rehab finishes’ at 12.30 pm than my CF appointment is a 2 pm so I decided that I would just stick around get some lunch in between.

So Rehab was like usual…A few people were off sick…which I don’t mind as it doesn’t feel as crowded and stuffy…

So I started off with 20 minutes on the exercise bikes, before moving onto weights for 30 mins…I had a 10 minute break for a drink and some munchies to refuel. Before moving on to the arm-bike for 25 minutes and than I finished off with a moderate paced 30 minute walk on the tredmil..So overal I had a good workout and I’m feeling it today…

After rehab I went to the food court and grabbed some hot chips with loads tomato sauce and a precious bottle of goodness (Coca-Cola)…So I had about 90 minutes to fill in so I ate lunch and listen to some music and basically just improved my tan in the sun

By 1.50pm I decided to make a move and head to clinic to beat the afternoon rush…I signed in as the second person there and took my seat…

When I'm bored I draw

When I'm bored I draw

30 minute later I was finally moved to a room after watching 5 CF’ers shown to their room before me…even though I was the second person at the clinic…So I was pissed…

My CF liaison nurse John did the pre-doc stuff….took my weight, accessed and flush my port which is still working great (touch wood)…

Ok now I had a few things on my mind that I needed to talk to my Doctor about….Number 1 was my wisdom teeth surgery and our plan of attack with the lungs, my current nebulised treatment and if I should do 3 weeks or 2, my nose bleeds ( 20 in 4 weeks), the Swine Flue Shot, and Finally my voice being horse for the past month……So I had quite a few things to discuss that had been playing on my mind….

Minutes turned into hours and by 5 pm I still hadn’t seen my doctor….to to be honest the clinic was a Doctor short and some things went down that caused the clinic to be slower…But I sat and saw at the very least 7 Cystic Fibrosis patients leave while I waited, which I’m still pissed off about since I was in the first three  patients to arrive…usually by this stage I would of gone nuts but over the last couple of years I have be come increasingly mellow, which is good in some situations but I seem to find myself going for a ride sometimes in the hospital system….Being mellow makes you more liked by nurses and Doctors but it also teaches them if they have to screw anyone, than you’re the bloke since your going to be nice about it.

At 5.15pm a registrar came into see me and write my hospital pharmacy scripts out (tobramycin, cipro etc) however he didn’t have the authority to write my outside pharmacy scrips (Ceon, Mylanta etc etc) so lets hope I don’t run out….So I tried talking about my concerns however since the Doctor was foreign from one of the island, the conversation was really difficult to follow and within seconds I knew there was no point explaining anything.

I did get him to look up my nose to see if anything would stand out in relation so my nose bleeds but I guess your not gonna find much when you use a everyready flashlight with a dead battery….yes a camping torch…not a specialised nose torch…..or whatever they are called…….

At 6 pm I walked out having only achieved 15 percent that I had set out to achieve…

As you know I recently changed doctors and I’m starting to regret it, while my doctor seems a lot more informed about new treatments  (got me into rehab) and more in touch with the modern world, he is so busy, due to extra patients and one less doctor that I believe since I’m a new patient of his, we have yet to develop that CF to doctor relationship which is causing me to go on the back burner when time is stretched or in other words I’m the first to be thrown to the wolves (registrars, huge waiting times)

Thankfully I’m doing ok at the moment in terms that my health is stable so I have been managing , But I’m going to have to seriously think about new options as this is not a 1 time event, its happened quite a few times over the last 6 months.

So that was my day..How was yours?

PeGsOn
Pegson1986@hotmail.com

October 7, 2009 Posted by | All Posts, Clinic Visits | , , , , , , | 1 Comment

PeGsOn Cystic Fibrosis Blog (tuesday 29.9.09) – Talk about Wisdom Teeth, Transplant, Death of a fellow Pulmonary rehab friend

PeGsOn

pegson1986@hotmail.com

September 29, 2009 Posted by | All Posts, Clinic Visits, Daily Rants, Media Posts | , , , , , , , , | Leave a comment

Pegson’s Blog Thursday 13.09.09 – Wisdom teeth really are a B#tch

Waiting waiting waiting

Waiting waiting waiting

Just a quick update for today..

I had an appointment to see the surgeon who will be removing by wisdom teeth…however that appointment never eventuated since he got stuck in surgery.

Although I do have a plan of attack on how I want my wisdom teeth situation dealt with..So here it is…I warn ya it may be a tedious read. J

So my wisdom teeth are the major thing holding me up from being actively listed on the transplant list for a lung/liver transplant.

All four of my wisdom teeth need to be removed as if left unattended they would become a future source of infection which would be disastrous while trying to recover from a transplant since your on immune suppressants..

Now here’s the thing….I’m not so much worried about having the teeth pulled out or the horrendous pain that it’s going to dish out to me for a couple of weeks however I’m really concerned about how the Cystic Fibrosis side of things will cope since I have a few mates who have had their wisdom teeth removed and general consensus is that a chest infection flare up occurs due to lack of coughing, physio and ability to eat correctly for a week or two…

So my plan that I have discussed with My CF team is to go into hospital under my respiratory Doctors (Wark and Twaddle) have a few days of IV antibiotics as a buffer… have the wisdom teeth removed followed by a week or so of IV Antibiotics to try and fend off any chest infection flare ups.

I also have the bonus issues of my liver disease which causes a lack of clotting ability and since teeth are heavy bleeders even in healthy people it could be an even bigger issue in someone with a liver condition…so the safest place for me to be is in hospital….

Ok so my plans sounds great…doesn’t it…ok well there is one flaw that we are ironing out as we speak…In Australia we have private and public hospitals…Now my Cystic Fibrosis is taken care of by the public system…now while you can have your teeth done through the public system its usually about an 18 month wait so most people with private health insurance go through the private system which is great if your healthy and can be in and out in a day or two but like I discussed earlier in the post that’s not plausible for me..

Ok so my dental surgeon is under the private system and my Cystic Fibrosis side is under the public so I have the added pleasure of organising to have these two systems join together…..Well it’s getting there but its been a laborious process but since I don’t have 18 months to sit around waiting on the public system its something that has to be worked out.

So I’m hoping that within the next month or two I can get this all done and finally be listed on the Transplant active list.

So yeah I feel better now getting that out..I probably wasn’t that informative but that was my day and I have written it in a confused and flustered state of mind.

Tomorrow I’m off to my Aunty Maureen’s funeral. Her death has hit me hard not only because I had a real connection with her but it hit me even harder since she died of lung disease and I got to see first hand of what my future likely has install for me…It’s something I may go into later on once I can get my mind around it.

Thanks for reading Guys..please enjoy this 15 second clip of me pretending my hand was a RAM (male sheep) while I waited for the doctor who never came..:)

PeGsOn
pegson1986@hotmail.com

p.s. I really enjoy your comments and emails even. I like good friendly debates and discussions…and please if you think I’m wrong kindly call me on it…because If I am wrong I may not know about it and by being informed it could help me out…So yeah comment me people. and can you retweet this blog and spread the word I would really appreciate it..thanks again.

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August 13, 2009 Posted by | All Posts, Clinic Visits, Daily Rants, Media Posts | , , , , , , , , , , , , , , , | 3 Comments

My Day at Pulmonary Rehab – Vlog of day

Well since my lungs have deteriated to the degree they can’t deteriate much more I have started a Pulmonary Rehab class (basically a light gym).

The Pulmonary Rehab is mainly filled with smokers and old people with OCPD. I’m the youngest by about 50 years…..

So basically the Rehab Program works like this..

>8 weeks 2 hours on Mondays and Wednesday
followed by
>8 weeks maintenance on Tuesdays for 2 hours

At this stage I’m 7 weeks in and feel much healthier within myself which is great considering we are in th emiddle of winter at the moment.

So on arriving at class you have your blood pressure, pulse and pxygen taken along with the borgue test where you express how well you feel out of Ten..

We start with a 10 minute warm up exercises mainly involving stretching and walking about on tippy toes 🙂

After that we are free to do what ever exercise we wish.

I usually start with the arm peddles for 30 minutes, arm and leg weights for 20 minutes, a light walk around for 10 minutes and a bike ride for 20 minutes.

after each exercise our pulse and oxygen is taken and we fill out a form on how puffed we feel (I’m usually 6.7…if you state over 8 for puffness you well of the Emergency Department….

After we have done our exercises we do a ten minute warm down…

I have made a VLog of my day at Rehab

August 5, 2009 Posted by | Clinic Visits, Media Posts | , , , , , , , , , | Leave a comment

First Blog Post – Cystic Fibrosis Clinic

Well Considering its the first post to be made on Pegson In the Present..I thought that there would be no better way than to start with Blog about my Cystic Fibrosis Clinic which I attended today…

First things..I usually attend clinic once once a month on tuesdays at the John Hunter Hospital.My appointment is always around the 2pm mark which suits me well since I like a good sleep in and time to get ready before having every nook and cranny examined..Its almost like your being judge on Dancing with the Stars jigging your way through all the tests the team put you through..

Ok so now you have the picture I will explain my day..

I got to my appointment on time and like usual even though I was first cab off the rank I was left waiting for quite sometime which bothers me on levels more so than time but I hate being out in the open at the hospital a CF’er like me is so vunerable to catching things its a pain..

Eventually I was allocated my room which is great as it reduced risk of cross infection as the team comes to you..

I had my port o cath accessed and yes I use Emla when I can….Why put up with the pain if you don’t have to I say..So my Port had good draw back of blood and was hep locked to last another month or two…Than I saw one of my doctors..I just changed Doctors and it seems Im in between getting a full time doc…

So I had to skip my rehab class the day before because I had a small lung bleed which in a whole isn’t unusual for me but since I hadn’t had a bleed for 3 or so months it was concerning so after discusing option I decided to go on my triple banga treatment (Nebs – Ceftazadime, Tobramyicn and Oral -Cipro) for more info read my Treatments page.

So after getting all my scripts I booked my follow up appointments and left clinic quicker than a horse out the gate..Hopefully I don’t pick up any bugs especially from my Doc since he seemd to have a bit of a cold…and knowing my luck I usual pick everything and anything up…

Well I think I did fairly well for my first blog. Its a bit akward but for a cherry pop it didn’t suck. 🙂


August 4, 2009 Posted by | All Posts, Clinic Visits, Media Posts | , , , , , | Leave a comment