It is an honor that you are here, Thank you!

Tuesday, August 31, 2010

Don't be Scared it's only Grade 1... rejection!

HOLY SHIT!

Pardon my language, but this just in, I have been called on Easy Call, the system transplant patients use to communicate with their doctors and Nurse Coordinators. I got my Easy Call on Monday August 30th, and the message I got wasn't entirely what I was hoping it would be...

The message was neither scary or exciting. a little nerve wracking,... yes definitely. But I can't imagine that after 6 months I went from minor rejection to an actual classification of rejection. GRADE 1. Now i am not entirely sure what Grade 1 means, but this is what i do know....

1) My meds will not change. I was hoping for a reduction in my Prednisone, which makes me fat, and bloated and just not cool with myself,

2) they will increase the amount of Cyclosporine i will take, which is one of my anti-rejection medications,

3) I have to go back to Toronto for another Bronch in 2 months. So the end of October beginning of November, I get to have another bronch done. WOOHOO!!!!!!

My nurse coordinator, Debbie, called me again toaday to inform me that I am growing Pseudamonas, which is what I was growing before my transplant. This is normal in transplant, as the mucus in your sinus' and in your throat will generate again in the lungs, when you cough, sneeze and so forth.

Pseudomonas aeruginosa is a versatile Gram-negative bacterium that grows in soil, coastal marine habitats, and on plant and animal tissues. People with cystic fibrosis, burn victims, and other patients in intensive care units are particularly at risk of disease resulting from P. aeruginosa infection.

I am not worried or anything, but I won't lie, i am and can be a little scared, that, what happened to Eva, might just happen to me. It will eventually happen, but I can only hope for the best, that i will live long like Bobby, and live life to the fullest.

Keep your prayer lines open, I might need you again at some point. But until then, live long and prosper. Stay thirsty my friends. haha

Love to you all

Ali

Surviving cystic fibrosis - Health - Macleans.ca

This article involves the same surgeon, Dr. De Perrot, who saved my life.

I owe him a lot, about as much as I owe my donor family.

I wouldn't be here if his magical hands didn't help in my life saving surgey.

I love that man, and will never forget him.

Love to the De Perrot family always.

Surviving cystic fibrosis - Health - Macleans.ca

Wednesday, August 25, 2010

Bronchoscopies, who knew!

Ladies and Gentlemen of the jury, the information i bring forward to you this day, will not only shock you into something you didn't know existed, but also prepare you for something a little more, out of the ordinary.

Bronchoscopies are a wonderful thing, after a transplant they can determine if you are "rejecting" your donor lungs. I had mine on the 24th of August, 2010. I took my time that day, waiting to get up to the office, and wait in the waiting room for them to tell me to strip down, and wear two robes. One for the front, and one for the back. I did what i was told to do, as always.

Usually my Bronch's are scheduled for the Wednesday's of my assessments, but this time around they had it on a Tuesday, and not just any Tuesday it was the Tuesday of Paige and Katie's birthday's. As you saw on one of my posts.

Anyhow. For some odd reason, the team up there, had me registered as having MRSA, which is not very cool. MRSA can be defined as the following:

Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.

Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community — among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.


I don't nor have I ever had MRSA.

So to my astonishment, I was whisked away into a room, a very isolated room, that was cold and not of the fun, light and brightness of the usual room I go to. The windows are closed, the blinds are closed and there is no one to talk to. You are literally ISOLATED! Not fun. usually i have the nurses to joke around with, and tell my funny stories to, but nothing. Then suddenly, there is a knock on the door, and there is a nurse there, in full precaution gear... face mask, gloves, hair net, isolation gown, booties and all the necessities for an IV.

My Port a cath isn't working properly, so I had to have a regular IV. They hurt going in, but the tingling sensation of the needle goes away.

As she has plugged me in, and prepped me with the mandatory throat numbing gargle, and inhaled solution, I am whisked away to the OR, where the begin the process of the Bronch.

First things first. My Doctor, Dr. Lianne Singer, the Dr. responsible for putting me on the list, is my Dr for the day, and i am so excited, I love her. She sees me, laughs, cause i told her the day before at clinic that i love getting Bronch's done. She thinks I am nuts, but I really do love them. She says to me, I'll be with you in a second, I need to change my iPOD song. She changes it to Elvis Costello's song called Alison; i am speechless, Dr. Singer is flushed.

I am given a sedative, as the numb my throat a little more, so i don't really feel anything, and I don't gag as they do it. I used to gag, then they sedated me. I don't know what they give you when they put you under, but they are awesome. I love the sensation of my body when it happens. It's gradual, but it's so relaxing. For an hour i don't know where i am, who I am or what i am supposed to be doing. It's like my kind of drunk, but without the painful side effects of a hangover.

I talk for a little bit, then they stick the spacer in your mouth, so they can guide the camera down your throat. I remeber the guide/spacer being put in my mouth, then... NOTHING! They cover your eyes, and then its just a matter of time, before you wake up in the recovery room, wondering, is it over already... can I do it again! Seriously, i am that weird.

As I come out of my stooper, I think, wow, this technique, this scientific method of dissection is going to help save my life. while they do the bronch, they take a biopsy of the lung, to see what's growing, and if there is any rejection going on. I think this should be done once a year in the CF clinics across the world. How much easier would it be to determine what the hell is going on in there. Just like my theory on Transplant assessments. They should be done as soon as someone's PFT (Pulmonary Function Test) are down to less than 30%. Before they are too sick to be transplanted.

I will get the results in about a week, and when that time comes, and those results come in, you will know, I promise I will tell you all, and you will know.

Until then, my fellow CF masters in crime. I bid you Adieu.

Tootles
Ali

18 MONTH ASSESSMENT!!!!!

Ladies and Gentleman, let me introduce you to my 18 month assessment.

But first let me tell you about the wonderful people who have opened their home to us while we are down there. Derek and I were blessed to spend our 4 days in Mississauga, about 30 minutes outside of Toronto.

We had a wonderful Saturday and Sunday of free time, Travis and Lauren had a little gathering and it was spectacular. Their hospitality will not go unrecognized. Not by us anyhow.

MONDAY: Assessment Day #1

6:00 am - wake up
6:30 - 7:10 am - travel from Mississauga to Toronto General Hospital
7:15 - 7:45 am - get blood work done
8:00 - 8:30 am - Pulmonary Function test & Arterial Blood Gas - have a nice bruise too.

Results of PFT :
FEV 1 @ 2.5 or 94%
FVC @ 3.1 or 87%
8:45 - 9:45 am - Chest CT & X-Ray
9:50 - 11:15 am - sat around trying to waste time, wish i could have slept, but didn't.
11:30 - 11:45 am - 6 minute walk test.
12:00 - 1:30 pm - lunch at the Chinese place. Not bad, not great.
1:30 pm - supposed to go in for doctors appointment.
3:30 pm - actual admitting to doctors office
4:30 pm - Doctor actually came in.

Results of Doctors meeting:

Stop taking potassium tablets, increase Cyclosporine to 175 am & pm. They may reduce my Prednisone level to 5mg instead of 7.5. WOOHOO, this is gret news. But won't hear until after my Bronch which is on Tuesday.

5:00 - 6:30 p, - Toronto General Hospital to Mississauga - TRAFFIC SUCKS!

TUESDAY: Assessment Day #2

8:30 am - meds taken
9:00 - 10:30 am - back to bed
10:45 - 11:30 - clean Travis and Lauren's apartment, it's the least we could do.
12:00 am - Register for Brochoscopy appointment.
12:30 - 1:00 pm - Had IV put in, and took the necessary inhalers for pre Bronc
1:30 - 3:30 pm - Bronc done, and believe it or not i love them.

When I get a chance, I'll post my last Bronc on here if I can get it to work. I don't smoke, don't do drugs and don't drink, but I love being put under for a bronc... I know, I am weird. But hey, if you have to do it, you might as well like it right.

My Doctor, Dr. Singer listens to music while she does her broncs. It's awesome, when I came in, smile and all, she had changed her ipod music to Elvis Costello's song called "Alison". It was awesome. She loves me, and i love her. If it weren't for her following up with me for the last 5 years, I wouldn't be here today.

The doctors in Toronto are amazing. LOVE LOVE LOVE them.

Well, until I get results back from that, you are going to have to keep tight, cause i am just as anxious as you are to hear if I have any rejection or anything like that. also, find out if i can change my Prednisone levels. Woohoo again, that will be amazing.

Well, time to head off to bed.

Love you all
Ali

Tuesday, August 24, 2010

HAPPY BIRTHDAY PAIGE & KATIE!!!!

I just want to send a Happy 1st Birthday wish to Paige Deborah Hardy.

A Special birthday for one of my favorite little angels.



She is as beautiful as her mother. Happy birthday to my little Darling.

And a very happy 22nd Birthday to Katie Lumley




Love you both
so much.

Wednesday, August 18, 2010

Cath Flow results....

Okay so it's now August 18th, and I am about to tell you the latest on my Port a cath, and what the cath flow did... or didn't do rather.

So cath flow is a product the insert into the port to eat away a the tissue or clot that is forming on the catheter, to help remove it, and allow flow to go through. Well, I had gone for the two hour infusion last week, and nothing happened, so I had to go back on the 17th, yesterday for the 4 hour process. You would think that would work right... yeah well, that's not m case.

Here is what Cath Flow is:

Like naturally forming human t-PA, Cathflo acts specifically on fibrin-rich clots in an occluded catheter.

  • Cathflo causes the conversion of plasminogen to plasmin
  • Plasmin dissolves fibrin in a clot, which results in thrombotic breakdown
  • With the clot dissolved, any residual debris can be aspirated from the catheter, and central venous access is restored
  • With Cathflo, there is limited systemic exposure because it works by dwelling in the catheter in direct contact with the clot
  • Because it has a short half-life, circulating plasma levels of Cathflo are not expected to reach pharmacologic concentrations, even if a small quantity enters the bloodstream
* The clinical significance of fibrin specificity is unknown.

So I headed out to Ottawa, the Civic Campus of the the Ottawa Hospital. Not the kind of place I want to spend my day. Dark, gloomy, reminds me a lot of St. Mike's simply because it's old. I wish I had taken a picture of where i was sitting for four hours, while i was being infused with this stuff.

The nurse who performed the procedure was awesome. But i mean, come one make it a little more patient friendly. If you know what I mean. i was there for a little over 4 hours, and was never offered a drink or something to eat. Not to mention I had blood work that needed to be done also. LUCKY ME.

Next Monday, the 23rd, i am heading to Toronto for my 18 month assessment. Yes folks 18 months, time sure does fly. My actual anniversary was on the 16th, but my assessment is about a week later. I promise to tell you all how it went. It's going to be a great weekend.

So i am going to sign off, Gripper intact and all, and I will talk to you guys again soon.

Cheers & Love
Ali

Sunday, August 1, 2010

Late Updates...

Well ladies and gents, I am here today to tell you a little bit about my life during this past few months.

In May, When my port was being flushed we were having some issues with her. First of all, she loves to take in fluids, but refuses to let them be sucked up. Short and sweet of it all, she won't give me blood. That is a crucial step when flushing a Port a Cath. What needs to happen is, all the heparin that is flushed into the Port needs to be taken out, in order to lean the catheter properly. When we are unable to get blood back, it means there is probably a clot, or in my case Fibrin issue. Short definition of Port a cath and Fibrin Tissue:

PORT A CATH

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septumthrough which drugs can be injected and blood samples can be drawn manytimes, usually with less discomfort for the patient than a more typical"needle stick".The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free


Ok so I cannot find a definition for fibrin tissue, so I will do my best to describe it. It's like a stocking growing along the end of the catheter and when you try to draw blood back from the port, it get's sucked up like a balloon does when you suck all the air out of it. Pretty much the same idea.

Surgery

Looks like i will be getting more surgery to get it removed from my body. It's going to be a weird feeling seeing as it has been a a part of who I am for so long, that to replace it or remove it would be like removing a twin. I know it's weird, but it's true.

Here is a picture of me with my port from my wedding picture were you can see it.

That round thing sticking out of my chest, that's my Port.

I am not sure when this will be, but it will be in the near future, that's a certainty.

I go for a Cath flow treatment on the 17th of august, so I'll keep you posted on that procedure.

Take care and stay healthy.

Love
Ali