Thursday, 28 March 2013

Hard to be patient.

As oxygen requirements slowly go up, it it difficult to be patient.
Several weeks ago, we returned from our week of evaluation at TGH, and today would normally be the day that our case is looked at by the transplant team but as we were told, due to tomorrow being a holiday, evaluations would be postponed until next thursday. SO here we are, waiting. Sometimes, time goes by so slowly.......

Monday, 18 March 2013

Great Idea

One really neat thing that came out of our time in Toronto was the "Oxymizer." The pendant conserves oxygen on the exhale and then releases an extra boost of oxygen on the inhale. There is a little baffle that moves inside the pendant. It can be worn under a shirt and is proving to be helpful. Due to the baffle action Carl is getting the benefit of 8L on 6L which helps to conserve oxygen in his stroller (portable liquid tank) when we go out.
Tomorrow we have a list of errands to attend to. We are trying to keep ourselves distracted while we wait for the assessment team to meet. April 4th seems like a long way away. We shall persevere.

I can't believe this..... arghhh I just lost three posts........ nuts
Whew, managed to resurrect two posts still lost one.

Friday, 15 March 2013


Heparin shots were a pain, but necessary when you are laying around all week long. The drug thins the blood which makes bruising inevitable. I was all for getting a sharpie and playing "dot to dot." ... not funny, who would have guessed? :)
A small price to pay for a week of what we optimistically think of as a success.
Carl's case will be reviewed at the weekly Thursday meeting, Apr 4th. After all there are other people ahead of us also waiting to hear their results. We expect to hear the early part of the following week. We just have to be mellow until then. Time will tell and the next three weeks will give us a chance to set up a treadmill routine and implement some of the dietitian's suggestions while we wait for results.
We are very appreciative of the staff at TGH. They were wonderful, all our questions were addressed. We are feeling a lot better than a week ago. I think we saw at least 5 Respirologists, several Cardiologists, the Physiotherapist, the Coordinator and Laura the Social worker, plus all the porters and outstanding nurses. It was an overwhelming week. It will be much easier next time as now we know where we will be going.

Tuesday, 12 March 2013

One hurdle crossed !

The results are in from the nuclear stress tests. The heart attack that Carl had in 1996 has not done any damage that would require any intervention procedures. The results of these heart tests came back "normal" and the Cardiologist sees no reason why not to give the go ahead. One hurdle crossed.
Tomorrow we will finally meet up with, "Angela," the Transplant Coordinator. Three times the charm. Two other appointments had to be cancelled due to Carl's testing. We will also meet another couple who are in the evaluation process.
With any luck the tests will be over and now we have the meeting/appointments.
One down side to staying in the hospital is the twice daily heparin shots to the tummy. Poor Carl has so many bruise spots I am threatening to get a sharpie and play dot to dot.
We really don't know what happens next. Stay tuned. Hope to have something interesting to report for tomorrow.

Monday, 11 March 2013

The Invisible Man

Monday morning I arrived at the hospital at 8:10am. Carl's first appointment was scheduled for 9am. Or so we thought. The oxygen was there he wasn't. His roomy, Raul, told me I had just missed him. So I pulled up a chair, sat down, propped up my feet on his bed and got out my knitting and waited and waited.
He blew in around noon right about the time I was looking longingly at his lunch tray. His morning had been taken up with an unexpected trip to the Pulmonary function Lab for tests including "panting in the box" and then up for the first half of the MIBI test (a nuclear scan of his heart at rest.)
Half an hour later and transport was back to take him away again. The second half of the MIBI test is when they chemically stress the heart to check for blood flow. Carl knew he had a blockage but it was so long ago his heart has built up "collateral blood vessels." The question is, "Will it be enough to endure the stress of a transplant?"
So I continued to knit, had a nap, checked facebook on my tablet, watched a building being torn down across the street ...... stimulating stuff.  He was back about 3 hours later.
We definitely consider this a productive day ♥
View from my hotel room, Look at the building floors beside the signs, when you think a floor is about 10 ft it gives you a bit of an idea just how huge these signs really are.

The Zanzibar, on Yonge Street, Toronto's oldest bar. It was the place to be in the 60's. Now unfortunately it is a strip club.   
* This post was re created from memory due to being accidentally deleted. My apologies to those who commented on the original post*

Saturday, 9 March 2013

Mr Johnston is in the building! ♥

Friday, March 8th
Loads of testing for Carl today and some meet and greet with members of the transplant team. He had an EKG, and blood work (16 vials), CT scan and X ray all before lunch. The Physio therapist came for a visit and to give him another 6 minute walk test. He went for a MUGA test, a nuclear scan, of his heart at rest. While he was gone the Social worker came by for a visit, she will meet with both of us this week.   Everyone is so helpful. There will not be any testing over the weekend and one Dr said we may be discharged until Monday. Then the Respiroligist assigned to Carl came in and when we asked he said he would prefer we stay put until the testing is finished. So, we have two boring days ahead of us. By Monday some of the results should be in.
Saturday March 9th,
Very quiet day. Everyone has gone home and Carl is the only one in the four bed ward. The most exciting activity today was a TB test this morning and retelling Carl's medical history to yet another Respirologist. The rest of the day was spent like this ......
Stimulating games of solitaire.
They have given Carl an "Oxymizer" that's the disk on his chest attached to the cannula. When he exhales the baffle closes and when he inhales the baffle opens and gives him an extra "oompf" of air, also the hose is a bit bigger diameter for high flow oxygen.
"Whats a six lettered word for....." (OMG I look like my mother)
 We did go for a walk, prowling around the hospital peeking in doors in the transplant clinic looking for the physio room on the 12th floor. Everything was closed and dark.
I headed over to the Eaton Centre to pick up a tablet cover at Best Buy. Had to stop and watch the fountain.

Just in time to watch the display. To think I used to bring my children to watch this when they were little and I was younger than they are now.
 I had intended to go to the "World's Biggest Book Store" but by the time I walked over here and wandered around I was pooped. By the time Carl has his transplant he won't be the only one with muscles. I will probably go have a bibliophile fix tomorrow.
You are mercifully being spared pictures of me napping in the chair. Tomorrow promises to be much the same as today.
Monday we expect Carl will have another nuclear test of the heart . This is part two of Friday's test and means he has not been allowed any caffeine for the weekend. We have an appointment with the transplant Co ordinator at 2:30pm. We have been told he will be busy all day with other testing. I will knit.
That's all we know for now, we will keep you posted. 
....... posted by Susan 

Thursday, 7 March 2013

9:00 AM Thursday

Just off the phone with our transplant coordinator in Toronto; I am being admitted for testing this afternoon!! Yippee!

Tuesday, 5 March 2013

A big day for us.
Got a call this morning from the transplant coordinator at Toronto General. We are now next on the list for our evaluation. As soon as a bed is free, I will be on my way to the hospital for the week of testing to determine whether or not I qualify for a lung transplant!!! The call could come any time now to get to the hospital for the tests so we'll be packing some things into a bag tonight and filling the car with fuel.....exciting, but also scary.....nothing is a sure thing..

Friday, 1 March 2013

Don't worry Be Happy ♥♥

Happier days in 2011 and we are still singing the song ♥
Good news today. IF we have not heard from our co-ordinator in Toronto by next Wednesday we are to call her. We were told by our doctor's office that there apparently is one person, awaiting final evaluation, ahead of Carl, which is good news. This of course could  change at any time as anyone who becomes a greater emergency moves up in the cue, as it were . I am the optimist Carl is the practical person needless to say we have heated discussions.
To date he has had x-rays, CT scan, MRI, multitudinous arterial gases, 6 min walks, pulmonary function tests up the "ying yang" and an angiogram of his heart and lungs. Whew. 
We are ready to head to TO. for the next phase.
Today Carl saw his cardiologist who said he see's no problem with Carl's heart coping with the stress of the transplant.  The sooner we get this testing over the better. Thank God we live in Canada! This whole process has cost us nothing, zero, zip, nadda. Tommy Douglas RIP you did a wonderful thing bringing in our national health care ♥
Keep your fingers and your toes crossed. At least we know we won't hear anything over the weekend. come Monday morning we will jump every time the phone rings.
posted by Susan