Saturday, 3 August 2013

The Roller Coaster

This is the first time I have had my head together to write an update.
First thing: Carl's new lungs are "Platinum Perfect" if there is such a thing. The surgery was text book perfect at the time, according to the surgeon. On the other hand .......... If there was a bad reaction to be had he has had it.

I think I remember an off hand remark about possible reactions to the drugs, slight disorientation, something like that. Yeah right ....

OK let me try and give you a blow by blow. Carl went to ICU after surgery he was there for a week. His kidneys did not like the new boys on the block ( lungs) and refused to play nice. This is not unusual be prepared if you are pre transplant. It is very common.

 So, Carl had to have kidney dialysis about 6 times. At 8 hours a wash it was time consuming. He unfortunately was very agitated,  delirious, confused and apprehensive. To put it mildly. They switched the anti rejection drugs in the hope that might help the delirium. Changed the anti anxiety meds. nothing seemed to help. After a week they moved him to step down (The other side of ICU) He was there for three weeks. All the worst reactions to the drugs continued. He was assigned a "sitter" as he had to be watched 24/7 due to the delirium and agitation. (Sorry honey, you probably don't remember this. I have stories when you are ready.) He was in great agitation. When I asked about it I was assured that sometimes this happens but not always this bad and that he would be back to himself. I said to the Doctor, "I brought you a man with shitty lungs and a perfectly good brain and you have given me a man with perfect lungs and ...... I want my man back!!!"
Stress level Mach 15.

He eventually got moved to the 7th floor. He was walking with Physio and was determined to use the low walker instead of the high walker from the step down unit. He is very weak and strong willed. His head was clearing and although he knew he was confused at time he had an idea when that was happening and I was seeing my man coming back to me.

I brought the doctor and nurses attention to the fact that there was some redness around his incision. He was having terrible pain in the sternum area. Which is not uncommon because the sternum has to be cut and is wired together. Last Thursday ( a week ago) the doctor drew a line with her pen on the skin at the upper and lower areas of the inflammation. I was with Carl all day on Friday. One of the lung team came in poked the incision and frowned and mumbled. Very un reassuring. I left around 5 pm on Friday and 3 doctors came in around 6 (was it ever thus?). Saturday they took an X-ray AND  found the sternum had shifted ( possibly due to his agitation) hence the intense pain and possible infection. This could only be corrected by surgery. We waited all day Saturday to see if he would get an operating room, at 5:30 pm they gave him supper, he had had nothing to eat or drink all day, and told him surgery would be Sunday.
Sunday morning I was at the hospital bright and early, just in case. My dearest friend Sandy had said she would come to Toronto to stay with me for this next upheaval.
Sandy arrived around 11am something and Carl went to surgery around 2:30 pm. We were told it would be about 3 hours. By the time they finished and Carl was in recovery and on his way to ICU it was about 4 hours. They had debrided (sp?) the area and re wired the sternum back into place, cleaned out the infection and put him back together with 30 staples and a small chest tube.

The day will come when we will look back and ask, " How did I/we do that?" Sandy is and has been my rock through this whole thing. Carl is the love of my  life and I don't know how I would have kept it together without her support (♥).

Sandy stayed with me, we had some nourishment and some libation (@.@) at the "Duke of Somerset" Pub, (their chicken pot pie is to die for) before we wended our way across the street and back to the condo for a pj party. Which consisted of both of us crashing.

That was last weekend. Unfortunately my worst fears were realized as we are right back into full blown delirium, confusion, paranoia, agitation, you name it. The chemical soup was playing with his reality again.
This past week has been frightening for him. Now he is having some atrial fib (also not uncommon with lung transplant) and he has to be on a heparin drip AND they have to check his sugar 4 times a day (his finger tips are all bruised) he is often over 10 which means insulin (also not uncommon in the early days for lung transplant).

Now, let me state here and now! Everyone is different! Carl's reactions are not the norm. He is "special." poor man, lol  ...It is unusual to have ALL the negative reactions. I have to say that had I known that the mental reactions were not uncommon it would have saved me many a tearful breakdown. Thank you Derek and Lynn from Spiritual Care ,Gail from Social Work and the superb nurses. (Vivienne and Deborah ♥ ) Your support to me will never be forgotten. I went through several of those teeny boxes of tissues.

To the many sitters, most of whom are nursing students I can only commend your tremendous care to Carl and myself. You are going to be outstanding medical professionals. Antonio who left us a very touching personal note, Amber whose professionalism astounded me, Kari who kept me chatting and laughing for two days, Ivan whose gentleness I will never forget and the many many more, I am so sorry I never wrote your names down but your faces are in my mind and my heart, I wish the very best of success for you all. The world will be a better place because of your dedication. ♥

Which brings us to today. Last night he was perfectly clear around 7:30 pm just as Deborah (his nurse) was finishing her 12 hour shift. This morning not so good but as the day wore on he became clearer. This is a good sign. Ivan and I took him to the 4th floor Atrium to sit in the sun for a while and I am sure it was a help to get out of the ICU.

Carl is getting soft food but still has the NG ( nasal gastric) tube. After transplant is is not unusual for the swallowing reflex to be weak and the last thing you want is to aspirate food into the new lungs. "Turn your head to the left and swallow several times, eat with a teaspoon, no straws allowed." Tedious but crucial and not to be ignored. He doesn't like it but he does everything they ask of him. ♥ He is my Champion !

We are five weeks and three days into a new life. Carl's stats are at 99% when he walks with the physios. I am and will ever be thankful for the "Angel" who is now a part of our life. To the donor family, I can only say that your incredible thoughtfulness has given us a life together we did not think possible. We will always remember June 26th as our New Life Day.

As Winston Churchill once said ,
"Never, ever, ever, ever, ever, ever, ever, give up. Never give up. Never give up. Never give up."

Thursday, 27 June 2013

The phone rang

Carl called me from the hospital on Tuesday evening around 9:30 pm. "Hi," he said, "They called." "Who," I asked? "Toronto has lungs for me." Five words that made my heart stop. I dropped my knitting jumped up and danced on the spot. "But the pager never went off," I wailed.

I grabbed my prepacked over night bag, books and knitting bag, threw in the chargers for the cell phone and the tablet and my make up (of course), forgetting my prescription (also of course) and tore up to the hospital. For the next two hours we had a "Cluster of magnitudinal (my word) proportions" while they arranged transportation to get him to Toronto. You would think they had never done this before. I was wild with frustration. They wasted 2 hours of a 4 hour window. Finally EMS arrived and popped him into an ambulance and away they tore.

I ran out of the hospital hopped into my little blue bug and went screeching out of the hospital straight to Tim Hortons for a "large coffee double milk and step on it." Hit the 401 straight to Milton where I picked up my BFF Sandy, around midnight, with all her bags and pillows. Knitting bags being a prerequisite to any crisis and off we went to Toronto. Parked the car then tried unsuccessfully, at first, to get into the hospital which was now locked down tighter than The Tower of London (the other one). Finally I threw myself on the mercy of a security guard in emergency who let us in. We found Carl. whew.

Now more waiting. Around 5 in the morning Sandy and I fell asleep for about an hour, sitting upright in the world's most uncomfortable hard chairs, thank gawd we had pillows. Surgery was booked for 10 am. We had a report the lungs had arrived and were being assessed. Surgery might be noon or 1pm. It was agonizing. We kept reminding ourselves that this might be a false alarm. If the lungs were not perfect the transplant would be cancelled. We were afraid to believe this was IT.

Two doctors from the actual team came in and said Carl would receive a double lung transplant (this decision is made at the last minute, depending on the need, the viability of the lungs and who knows what else). The Dr took a black magic marker and wrote his initials on each collar bone, Kinda spooky. We were told that within the next 30 minutes Carl would be taken to the holding room before the OR. They had already given him the first anti rejection meds and hooked him up to an antibiotic drip in preparation.

At 11:30 they said we are taking him straight to the OR. I went with him to the OR doors kissed him and saw the door whoosh shut behind him. I stood alone in the hall. It was the worst moment of my life. There is so much hope and fear wrapped up in that moment.
The doctor had told us to go somewhere, anywhere but at the hospital. It would be hours before there would be any news. Surgery was expected to be about 12 hours.

We booked into the hotel and dumped our stuff and went to a pub for lunch. I had Bombay chicken curry and a pint and Sandy, as my designated "walker" had  coffee and a modified version of the curry. Not sure if that is in the right order but anyway ...
Back to the hospital. This time we were directed to the surgery waiting room a VAST improvement over the first waiting room of hell. This one had cushions! ... and you could actually put your feet up. I crashed for about an hour.

Around 1:30pm a nurse came to tell us they were removing the left (the worse) lung first. The Dr is a perfectionist!  Carl will be pleased to hear that. She was all smiles and confidence.
At 5:30pm a different nurse came to inform me that they were starting to replace the right lung. We were amazed. Everything was moving so quickly now. Carl was doing well and the team were very confident. 
Shortly after 8pm the Dr came in to say that they were finished  (3 hours sooner than projected). He was beaming. The surgery was problem free. They didn't have to use the heart lung machine Carl had done amazingly well. The surgeon, Dr De Perrot, was all smiles and looked as if he had been relaxing all afternoon, not standing for 9 hours saving Carl's life. I was weak with relief. He said to wait about an hour to give the team time to settle Carl into ICU and then go upstairs. 

Sarah (Sandy and Ernie's outstanding daughter and Justin's baby sister) arrived with a picnic feast which she spread out on a small table complete with Christmas napkins. We were famished. We laughed with tears and devoured almost everything. Hugs and Kisses and Sarah left to wend her way thru Toronto traffic upon her mighty bicycle, "Get your Valet parking out of my bike lane." Love her to bits. ♥

Around 9 pm Sandy and I went up to ICU. I was told I would have 10 minutes with him. I had to touch him and know he was ok. Sandy waited while I went in. A very intimidating place and I had already seen him in the ICU in London. This place is HUGE. They were taking an X-ray when I got there. He was completely sedated. I felt his brow, held his hand and told him I loved him. 

Sandy and I were giddy as with exhaustion, we staggered back to the hotel. Two old bag ladies, lol  We crashed and I mean CRASHED. Hardly had the strength to swipe the screen on the tablet. Sweet sleep.

This morning we were back at the hospital. The best (or we were starving) scrambled egg with salad stuffs wrapped in a pita. oh yum. Up to the ICU, had to wait a while after being snarked at by a clerk. Sheesh we didn't know the protocol. Pardon us.
Carl looks wonderful. He was sedation free. He knew me and waved to Sandy. I stayed with him for about an hour and then left to take Sandy home and come back to London and take care of a list of things I didn't do on Tuesday. 
Tomorrow I am back to Toronto to spend as much time with Carl as they will allow and next week I have to look for accommodation for the next three months (at least) for the two of us. I am still wound up and am having a hard time to settle down.

To the donor family: Your angel will be a part of our life forever. We will never forget you and will honour June 26th as a Special Day for the rest of our lives.

Saturday, 22 June 2013

... and so we wait.

If there is one thing that you will learn, if you are unfortunate  enough to have anything to do with pulmonary fibrosis, it will be; "How to wait."
I always said, " Once we get the pager waiting will be a breeze because we know we have done everything we can do." That was before the pneumonia and Carl's "incarceration" at the Victoria Hospital. Our practical side understands that this is the wisest course of action. Our emotional side chafes at the separation. 

The staff have brought us another large chair bedside and to what we jokingly refer to as our "living room." at least we can both sit side by side comfortably and talk. Carl has physio 2 times a day on weekdays on the weekend I walk the halls with him at least once a day. He has only been outside three time since May 5th. Today was far to humid so we stayed indoors. He watches movies and reads the newspaper on his tablet and I knit or read. We nap in the afternoon. Not exactly the exciting life we hoped for but that will come in time.

Carl is on his 6th room mate now. Hospital protocol, being what it is, he has had 4 female and 2 male "roomies." Our present companion is an elderly lady who, as her daughter said, "Would have a fit if she knew there was a man close by." We are keeping Carl on the "down low" but I think she has figured it out by now.
We received a very touching note recently from our last companion. It was very gracious and brought a tear to our eye. She and Carl had an opportunity to chat and joke a little. Here I was thinking how nice that was from our perspective, we had no idea our friendliness had meant the world to her. Their card is on our bulletin board and I think of Virginia and Jerry every time I see it ♥

The most difficult question we face  is, "How can you wish/hope/pray for lungs when you know that means someone will die."
Our Doctor said to me, "People die everyday, pray instead that the family will make the decision to allow organ donation. Let them have a living memorial to carry them through the difficult days by knowing that many lives were saved. Their tragedy and loss will be no less painful but in time they will remember the gift they imparted." That is the thought, the prayer, I hold in my heart. 

Thursday, 6 June 2013


My father used to say, " Patience is a virtue, sought by many and found by few."

Carl is making excellent progress with physio. He managed a stroll all the way down the hall and back. Larry and Heather (his PT's) are very encouraging.
His appetite has improved now he is on a regular diet. Today Carl said, " Who would have thought I would say hospital food tastes good?" I said, " If they had the pureed diet first, they would this is fine dining."
The doctors have decided he is going to stay put in hospital until the "call" comes. There are too many variables right now and we do not want to do anything that would jeopardise his place on the transplant list.
I pack my lunch and my supper and take it with me to the hospital. A couple of times a week I will come home early for a hot meal.
We spend our days chatting, napping, he plays with the internet on his tablet, reads me the news and I knit.
We wait for the phone to ring. We try not to think about it but we do. 


Saturday, 1 June 2013

Quite the week!

Well, this has been quite the week. Carl has been moved to a room on the respirology floor. Progress is slow but there is progress. We are back on the transplant list as a Status 3 critical. My bag is packed and we are ready for the call.
Physio comes by every day to take him for a walk. He uses a stationary bike at the chair and he is using arm and leg weights. If they add a walk he is exhausted for the rest of the day. The goal is to try and get him back to where he was a month ago.
Three weeks of the ventilator tube has played havoc with his voice. My "radio announcer" will be back but it will take time. Some issues with swallowing also due to the vent tube. The last thing he needs is to aspirate food . Their solution is the "thick" diet for the meantime. It is disgusting but necessary. All fluids are the consistency of honey, even water. gag. He is still on an IV drip to make up for the lack of fluids. He has no appetite, not that I am surprised. A plate with a grey pile of purred something surrounded by a green mass and a white mass is less than appetising. I brought him some Greek yogurt from home, which he enjoyed.
I will never forget the medical team in the ICU. This bears repeating. They were outstanding in his care for him and their kindness to me. I am trying to think of something I can take them as a thank you ♥

Monday, 27 May 2013

Looking Up

Friday morning Carl was sitting up in bed and anxious to get going. Some of the effects of the sedation cocktail have still to wear off but he was more like himself than he has been in the last 3 weeks.
Guess who was up taking a few steps? Indeed! We are very encouraged. Yesterday was a quiet day watching TV and waiting for a room on the Respirology floor to become available. They removed the central line from his neck. His O2 stats are fluctuating but he can maintain high numbers without his heart rate soaring. All great news!
As a precaution he is back on antibiotics by IV for another 7 days. He has a low grade fever and the doctor wants to make sure there is nothing "brewing" in his lungs. The last traces of the pneumonia are finally gone.
 The staff in the ICU at the Victoria Hospital have been magnificent not only in the care they have given Carl but the consideration toward me. I am very grateful for their support.
We just want to be back on the transplant list and home. ♥

Wednesday, 22 May 2013

Well that sucks!

My mother would chastise me that that comment was not very ladylike. But, some days you have to tell it like it is.
This morning after rounds when the team gets together for a chin wag they decided Carl would have to go back on the ventilator. I wasn't at the hospital yet when all this was going down. The social worker filled me in.

"mother approved"

Carl slept a total of 45 minutes all night. He was extremely agitated all day and night and his O2 levels were in the basement and his heart rate was sky high. At the last moment the Dr. decided to try the non re breather mask at 100% in the hopes it would do the trick. They had tried the BiPap machine and he tolerated that for 5 minutes. Well, his heart rate came down and the O2 levels went up. Everyone was walking around all day with their digits crossed.
He was still agitated today and when he is determined look out!
When I left at 5pm he was resting. We will see what tomorrow brings.

Monday, 20 May 2013

Ventilator is Out.

Good news at last. I called the hospital this morning to see how Carl had slept and his nurse told me the Dr.'s were doing rounds and she would call me back. When she called and said they had decided it was time to take out the ventilator I was very excited. I quickly headed up to the hospital where they explained this would be a trial extubation and at the first sign of trouble he would be intubated again. At 11:20 this morning they removed the ventilator. Everyone stood around watching him. The doctor was waiting to make sure he would not be in any distress. If his stats dropped he would be back on the ventilator. They checked him at 30 min, 1 hour and 2 hours later and he was still in the 90's.

I was some what delighted, to put it midly! 
The bronchospastic cough has gone too!! What a relief for him. ♥
Spent the rest of the day trying to get through to him. It will take several days for the sedation to wear off. He managed to croak out my name with a very raspy voice so I knew that he was aware some of the time. He tends to fade in and out which is perfectly normal considering the amount of medication he has been on for the last 2 weeks. We still have to get the feeding tube out as soon as they are sure he has his swallow reflex and he has to get his strength back.
This is the first positive in over two weeks. His respiroligist should be in to see him tomorrow and I know he will be as happy as we are. Dr M will notify Toronto and we will be back on the "Active" list.

I came home made some phone calls, ate a hot supper and fell asleep in the chair for 2 hours.

Saturday, 18 May 2013

Bronchospasm cough

The last few days the cough has continued. There is some discussion whether it is the fibrosis alone or a combination of the fibrosis and the ventilator tube. Today we had a mile stone! They turned the ventilator pressure off for 5 minutes and some of the numbers bounced a little, nothing alarming, then they turned the pressure back  to 5 for 2 hours and he maintained his levels with out having to increase the oxygen. He has been reset back to a pressure of 10. Now, he was sedated and not moving around but the RT's were very pleased and gave it a thumbs up. That is the most positive report I have had in the last 2 weeks.
Tomorrow they will try it again and if we have as good an outcome as today they may consider removing the ventilator.
Carl has been moved to a different room in the ICU. This one has a power lift in the ceiling and I watched them scoop him up and deposit him in the chair today. It was very impressive. He was sedated most of the day, every time a coughing fit started they gave him a bullas of sedation to help him to recover.
He has had the three days of steroids and they are keeping him on a reduced dose, higher than his usual. It looks like it is working.
My heartfelt thanks for all the prayers and kind words. They have meant the world to me.

Wednesday, 15 May 2013

It started out to be a good day.

I arrived this morning to find Carl seated in a large chair. Glasses on and fairly cognizant of his surroundings. I was delighted. (insert very large happy face) Dr Mura came in and was able to speak to Carl as well and we were pretty sure he was following along with the conversation. It was pretty evident that Carl wanted to know when the tubes would be coming out and he was distressed to learn that we just don't know. He wrote on the white board , something that looked like "nightmare." Broke my heart. Dr Mura spoke to him very encouragingly and told Carl the he will be back every day to see him.
The Dr told him that they are going to be doing a 3 day  series of steroid treatment. As of 5:30 tonight it had still not come up from the pharmacy. (insert frown face) I am trying to be patient.
I had to leave for an appointment around 3pm and when I got back things were not as good as the morning. As the sedation wears off the need to cough increases, then he is more aware of the tubes, which he wants to grab because he can not get his breath, which made him cough worse. Then respirology came in to suction his lungs which causes him to cough again. It was a viscous circle.
The gave him more of the new sedation, it didn't work, then he had a terrible coughing spell, the spasms caused the tubes to pop apart on the ventilator and I had to call for help. It was traumatic for him and for me. They gave him stronger sedation in 10 minute bullas, Every time the 10 minutes was up he started coughing again. They gave him another dose and called the ICU Doctor to come in. He may have to be sedated more for a while. Perhaps it was too soon to bring him all the way out.
His respirologist did say that when the tube comes out and he is back on the active list he will be a Status 3.
There is nothing worse in the world than standing there watching this and not being able to do a damn thing to help!

Monday, 13 May 2013

Baby Steps

I have been sick for the last couple of days with a nasty cold. Of course this meant that I banned myself from the ICU. The nurses were very kind and I called them several times a day and kept informed on Carl's progress.
Last night I suddenly realized that although I was still coughing I felt better than I had in days. That is when a massive anxiety attack hit me. Nothing would do but I HAD to see him. I thru myself together, and believe me I was not a pretty sight and tore up to the hospital. (The "droplet precautions" have been lifted but I will still wear a mask until this cold passes. The darn thing causes my glasses fog up.)
He was as glad to see me as I was to see him. We didn't have much time because it was shift change in an hour. It gave me an opportunity to ask questions of the nurse, in front of Carl, so that he would hear from her that he is IMPROVING. The last X-ray shows a minimal improvement. The ventilator O2 has been turned down slightly. The pressure is still being maintained. The fever is gone. The lab work has all come back bacteria free. These are baby steps but they are in the right direction. I just want him to come home. We had no idea a week ago that  we would be at this point. He is still lightly sedated so he can tolerate the ventilator and drifts off every now and then. This week they are going to repeat the CT Scan and compare it with the one he had previously and today we should have the results from Friday's bronchoscopy.

Thursday, 9 May 2013

Not much to report.

Been at the hospital since 10:30 this morning. Another fever 39.1 this time. All the tests came back no bacteria present. Dr's mystified. They are running another batch just in case something got missed.
 Possibly another bronchoscopy tomorrow, which as he already has a tube down his throat will be rather easy. They will just sedate him. He is conscious just lightly sedated. He is breathing on his own with the help of the ventilator to maintain pressure in the lungs. He is frustrated he can't speak.
 Physios came in today and got him standing beside the bed and he even took 2 steps. That wiped him right out. 
The presence of the ventilator means were are on hold for transplant. We knew when we were approved that if he ever ended up in the ICU intubated this would happen we just didn't expect that it would. When he comes off the ventilator we hope to be back on the active list. Time will tell. Still deep in the woods.

Tuesday, 7 May 2013

From Bad to Worse

No good news I am afraid. The hospital called me at 3:45 this morning to say they were taking Carl to the ICU. He was going to be ventilated. I wanted to know if they could wait until I got there so I could at least speak to him but they said, no. I got dressed and hurried up there anyway. The Dr came out to speak to me and he didn't have much encouragement. They were planning to do a bronchoscopy as well. 
I called Jason, Carl's son, and he came. 
Carl is in a chemically induced coma and on a ventilator. A terrifying sight to be sure.
This morning we will have a meeting with the Dr's after rounds. I will know more then.

Monday, 6 May 2013

Bi Pap

This morning I found Carl worse than when I left him yesterday. He was running another fever and is very sick. As the day progressed the fever broke. Thank goodness for that however, his respiration rate is very high and they called for another Xray and blood gases. They have moved him to another semi isolation room on the 5th floor in Respiratory. His antibiotics have been stepped up to meet a broader range of infections. He was seen by another couple of Doctors. As one of them put it, "You are not out of the wood, you are in it." They are very concerned and have put him on a BiPap Ventilatory Support System which will help him breathe. This is a very tight fitting mask with head gear to hold it on. It is claustrophobic to say the least. It forces air into his lungs so he doesn't have to try so hard to breathe. He can neither blow his nose, take a drink of water or use the phone while it is on. They will take it off every couple of hours and switch to the other mask to give him a break. The lungs are a tremendous organ. We don't use a fraction of their capacity. When we get a cold or infection we have all the reserve capability to help us continue to breathe. With interstitial lung disease you loose that reserve capability. As my mother said, "We didn't sign-up for this."

Sunday, 5 May 2013

The One Am Drive.

This morning I awoke at 1am to find Carl in some distress. He was very short of breath and was coughing dreadfully. I turned up the concentrator and by the time I got back in the room he was shivering with cold and sweating. I got dressed and called the ambulance.

Off he went to the hospital with me flying behind in my little blue bug. By the time I got there he was being admitted and I was made to wait in the germ filled waiting room for almost an hour! Toronto General Hospital includes the "caregiver" in every aspect of care. Being excluded in London was upsetting. Finally I found a nurse who let me into the Pod area.
Carl had a temperature of over 103F, which in adults is dangerous. They instantly put him on fluids and antibiotics. His breathing was so bad he could only speak 3 word sentences.
Last week we thought perhaps he might have a slight infection so he was put on some drugs to stave off this very thing happening. Whatever this "bug" is it was determined to get through.
We had a parade of Doctors and Respiroigist interns in to see him. They were so impressed they decided to keep him there ♥

He has pneumonia for sure, what kind we don't know yet. They are upping his prednisone to 60 mg from 15mg a day as well as aggressive antibiotics.
They kicked me out at 10:30 this morning and told me to go home and sleep. I tried to nap for about 3 hours but wasn't too successful.
Around supper time I was back and found him resting, still very short of breath even on 15L and the NR mask. At least the fever has broken and with the oximizer he was able to eat something. He had to go back on the mask afterwards as the O2 stats started to drop again.
He is in a private semi isolation unit with his own executive bathroom ( la tea dah). He has his tablet so he can listed to his tunes. Hopefully we will both put in a quiet night. Note to self: cancel all this weeks appointments.

Wednesday, 1 May 2013

Physio and good news

We are now set up to do physio two days a week in London. What a relief. That drive was getting to be a bit much for both of us. With the price of gas and parking it was the cause of some financial pain to say nothing of rush hour!

Susan , behind the wheel, on the Gardiner Expressway, I kid you not ♥

Carl has agreed to take part in a skeletal musculature study for U of T. This specifically for pre and post lung transplant patients. It is only 4 appointments over the course of his experience. If they gain some insight into recovery health down the line, well so be it.

We are thrilled to hear that one of our transplant family received her gift of Life on Saturday. Our heartfelt thanks go to the donor family on our friend's behalf.
From sorrow there is great joy. We look forward seeing her in Toronto soon.
Love and a fist bump to you Gail !!!

Tomorrow I am off to the blood donor clinic, they want me, isn't that nice? I am in that blood group that is 8% of the population. So when they start calling and asking me I better get a move on.
An hour or two of my time is the least I can do.... and they have really good cookies <big grin>

Wednesday, 17 April 2013

And one, and two, and three .....

I am very good at counting to ten and wiping things down with sanitzer.
We have had four sessions so far and we are getting used to the routine. We are seeing some familiar faces each time we go to the Physio department. Here he is starting off with three pound weights around his ankles. A little "dancer's back kick" what form! 
Monday evening we attended a Pre-transplant education session. The subject matter is just about as serious as you can get. We are talking life or dead situations after all. One of the Transplant coordinators was so entertaining. She gave us factual information interspersed with humorous stories. It is a lot easier to retain somewhat frightening information when your laughing. We appreciated the time they took to share all their experiences.

Thursday, 11 April 2013

"R2D2" had a hissy

Lazy day today, yesterday was the first day in Physio and as it was Wednesday it was very busy. They are going to expand the department, more machines and more room to move around. I didn't participate very much as the Physios were establishing his program. I will have more to do tomorrow.
So nice to have met Carmen and Pam in the hall. Making contact with others who have been through the process is very encouraging.
The drive home was horrendous with lashing rain and fog. I was driving, not fun, and yes, I will get used to it. 
Billy came today to fill "R2D2" with liquid O2. About an hour after he left we discovered a hissy fit going on in the spare room. There was liquid O2 spiting out of the top and clouds of vapour rolling out from underneath the collar. Very Dr

Carl called our supplier and they suggested throwing a towel over the top. The tank was rolled into the foyer, no carpet there, to await Billy's return.

My lovely beach towel was frozen as a rock.

I took a peek underneath, all we had was more snow and lots of vapour. Billy showed up a few minutes later, poured some hot water on the top and then took it out to the truck to thaw and brought us a new full tank. Science 101, don't let the tank get wet (it was raining when he took it down to the truck) when you go to fill it or the valve will freeze. 
Tomorrow we are back to Toronto for a Physio appointment only. It seems as if Monday and Wednesday of next week we will have additional appointments.

Monday, 8 April 2013

Signed, Sealed and Delivered

We are listed. I have the pictures to prove it.  What a relief!
Our morning started with a visit with our Transplant Coordinator on the 12th floor and we went over pages of information. Carl will need a Hepatitis B injection, we had TwinRix several years ago but because of the  immunosuppressant drugs he will need it again. He has already had a flu shot and the pneumonia vaccine so that is no worries.
Then we went down to the 10th floor to visit with a Thoracic surgeon and sign the papers. I said, " I need a picture of this momentous occasion." He said, "That hasn't happened yet." I laughed and said,  "We waited long enough for this I have to have a picture." "Sign here Carl, if the photographer is ready." It was a giddy moment. Everyone who knows me, knows I got all teary. ..... lololol
Then back up to the 12th floor to deliver the file and the signed papers to June at the office. "Here you go, signed sealed and delivered," we said.
Then a stop off to refill the liquid oxygen tank, which froze to the tank...grrr.
Popped into the physio dept and booked our appointments starting this Wednesday.
Picture op at the elevator:
This damn thing keeps slipping off my shoulder.

Are you coming?
I was busy taking a picture of Princess Margaret Hospital across the street.
The original hospital is the little 6 storied building on the left.
"Sick Kids" is south of Toronto General Hospital, Mount Sinai Hospital is beside Princess Margaret and Women's College Hospital is around the corner. It is an awe inspiring place to be. Miracles happen here every day!
We were one step ahead of rush hour flying down the Gardiner. Can't believe how the city has changed.
Rogers Centre, "Skydome" back in my day.

Royal York Hotel (where my parents spent their honeymoon) and Union Station getting a face lift

construction going on everywhere you look


I want to know who can afford to live in these condos.
We will be back on Wednesday ♥

Thursday, 4 April 2013

We are so excited .....

This morning Carl got a call from TGH. That appointment we were supposed to have in 2-3 weeks.....well it's THIS Monday!!!!!!!!!!!!!! We are euphoric. The papers will be signed, the meeting with the surgeon, the pager will be arranged and we will be official. Once the wheels started turning they were smoking. We are happy happy happy.
To celebrate Carl did 10 minutes in the work out room. Now we have to get him some running shoes.

Wednesday, 3 April 2013


WE HAVE BEEN LISTED! ANGELA, THE TRANSPLANT COORDINATOR, JUST CALLED FROM TGH. THEY MET LAST THURSDAY AND APPROVED CARL FOR TRANSPLANT. We will have an appointment within the next 2-3 weeks to meet with the surgeon, set up the pre transplant physio program, sign the papers and get the pager. I am weeping with relief. My optimism was beginning to take a beating.

As Carl puts it, "We are almost at the starting line."

Tuesday, 2 April 2013

Working It

So, we hit the workout room today. We had the whole room to ourselves. Ten minutes was the limit.
I can't help but feel that the last three weeks have been wasted. We don't know if we are doing anything right. How long should he workout, at what O2 level, how high should his heart rate go , how low can his O2 levels go, what should his O2 saturation level be???????? We are anxious to do something, anything that will feel like we are going forward. "Hurry up and wait" ... we are getting very good at that.

Monday, 1 April 2013

Counting the days

Here we are in April, at last and counting the days until the BIG meeting which will be Thursday April 4th. The suspense is wearing on us both. No matter how you count the days they still add up the same. We would like to think we might hear something on Friday but   we don't want to make it harder on ourselves so we are focusing on next Monday with expectation of hearing the results. What ever the results we will post as soon as we know.

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

Wednesday, 27 February 2013

Background Story

It struck me, after talking to my cousin Ralph several weeks ago, how out of touch I have
become with old friends. We send jokes and articles to each other while becoming personally
more disconnected. It all came home to me when talking to Ralph exactly how acute it has
become, so, I would like to update you all. I am terrible with dates, time seems to pass by very quickly, but I believe that this last adventure started in 2009.
 I went to the doctor having become frequently quite short of breath. I was doing my job, but having to pause frequently to catch my breath. I was referred to a Respirologist who began a period of testing me for various things. I can’t recall exactly when he came up with the answer but it was finally diagnosed as idiopathic pulmonary fibrosis.
 Did idiopathic mean somehow that I was an idiot for having caught it?? Apparently, idiopathic means
that they don’t have a clue how people get it! Now I’ll bet that all my old friends will
immediately assume that my years of smoking finally caught up with me. Apparently though,
there is no evidence that smoking causes the disease, but that it might egg it on a little! This
disease, they believe, is caused by some foreign substance that one might be exposed to like fiber
glass, asbestos, mold ... or some other unknown irritant. So, “idiopathic” means that they don’t
have a clue!!
This disease has no cure, or real treatment, and is deadly. It certainly will not get better,
but my doctor had told me that some of his patients have lasted a number of years. However, one
of the British studies I had read said that 50% of those diagnosed, died within 3 years.
I was able to continue working, doing most of what I had to do throughout 2011, but I
was having to take longer pauses to catch my breath. I could load luggage into the back of a van,
but I had to pace myself carefully. I was becoming more and more aware that my passengers
were certainly noticing my heavy breathing, but my employer was allowing me to continue
working. Driving was a big part of my job, and I never had any problem with that part of the job;
that never stressed my breathing.
The date January 9th, 2012, I will not forget. I started loading luggage that morning, and
was having a lot of difficulty. I told my supervisor of my breathing problems, and she suggested I
get another driver to help me. He did, and I got the vehicle loaded, and the drive to Detroit was
fine. That day though, my pride kicked in, and I realized I could not expect others to aid me in
my job. It was my last day of work…
During the next few months I had several meetings with my Respirologist and was given
several pulmonary function tests. I was put on a drug called Prednisone which scared the heck
out of my lady. She had been married to a man on the drug and has experienced some of the
nasty side effects of the drug. Apparently, it promotes weight gain, and be quite a mood changer
in some people. Her way of putting that was not quite as polite. (Susan here: I call it the nasty b@s*!@rd pill)
I had developed quite a nasty cough and the Prednisone had helped it a fair amount but as I was
weened down in dosage, the cough would come back. I could not sleep other than on my left side;
anything else and I would cough badly. As the cough got worse, I would fight to find enough
time to catch my breath, and it would become quite scary.
Finally, in late June, Susan would ask me repeatedly to go to the doctor when it became almost
impossible to catch my breath. We called the family doctor, who was away on vacation. I went to
see one of the other doctor’s in the office who immediately suggested that I head for emergency
where she thought tests could be better carried out..
I have tremendous respect for our medical system in Canada, but waiting for 4 or 5 hours
in the waiting room is uncomfortable anyone. When I was finally seen, I was put on oxygen, some tests were conducted, and it was decided that I should be admitted. My oxygen levels at
that time would get no better than about 74. (We would not find out until mid-morning the next
day that there was a problem with the oxygen generator at my station ). The nurse in the morning
told me that they had a room for me on the cardiology ward but that she did not want to send me
up there with the bad readings I had, so the respirology techs were called in. It was amazing that
this one gentleman came in and immediately found the defective equipment. When it was
replaced, the oxygen was able to bring my levels up to normal while on O2 supplement.. Through the next several days, I was treated for a lung infection, and then informed that I would be on oxygen 24/7. Several
more days and I went home with prescriptions for 2 antibiotics, and a plan to again ween me to a
lower dose of Prednisone.
I guess at our ages, now a senior citizen, we don’t think of things that might be available
to us. I had gone to the Respirologist before and had asked many questions about the disease, and
had read quite a bit also. I was resigned to the fact that this disease was not treatable, and that
there were different speeds that the disease took in different people. I had been asked to be part
of a study for a new drug that was being tested to perhaps slow down the progress of the disease.
I immediately agreed, but testing proved that I did not meet the requirements; I had an elevated
white cell count, probably the result of me being on Prednisone.
Oh yes, back now to one of the questions I had never thought to ask. I figured what was the point,
I was a senior citizen! ||The question entered my mind suddenly though, and I blurted it out to
my Respirologist. What about a lung transplant????? I had not before thought of the possibility,
but was surprised when the doctor said that they were possible… Even for someone in their 60’s,
and 70’s; perhaps not so much for those in their 80’s etc…. I got the sense though that even that
might not be impossible.
posted by Carl

Hurry up and Wait

If patience is a virtue we must be saints. lol
We will fill in more background later just wanted to give you an up date. We have a tentative date for the week of testing in Toronto.... April 15-19, 2013.
Saw the local Respirologist on Friday last and he is going to call Toronto and see if we can fast track the evaluation testing.
One of the many tests Carl has taken requires that you walk up and down the hall between two cones  for six minutes. They measure the distance walked in the 6 minutes compared to his supplement oxygen level.
Emily's first birthday November 2012

Back in November 2012, Carl walked 267 meters on 3 L of O2. Last Friday he walked 302 meters in 6 minutes but he was at 8L of O2.
The Dr said he was going to call Toronto and see if they would consider admitting Carl for a week for the evaluation testing as he is concerned at the progression of Carl's disease. Today Carl spoke with his Dr and he said Toronto is receptive to that idea and we may hear from them in the next day or two. Keep your fingers crossed. The sooner we complete the evaluation the sooner we get approved and then on the transplant list.
Fleetwood Mac is in Toronto Apr 16th
We just heard Fleetwood Mac will be in Toronto in April 2013 ... sigh ... if only we could get tickets.
posted by Susan

Monday, 25 February 2013

Three steps at a Time

This is a daunting site to a person with advanced IPF. It wasn't that long ago (January 2010) Carl could take these stairs three steps at a time.
Positive attitude is vital when facing a lung transplant.
We have a Goal. We have a plan. Post transplant we are going back to this resort. When Carl is ready to tackle this flight of steps we will know he has won.
This will never happen without the Gift of Life from an organ donor.  Please  register as a donor today. There are approximately 1500 people waiting for a second chance at life. ... posted by Susan

What is Idiopathic Pulmonary Fibrosis?

We have learned there is no quick and easy answer to this question. "Idiopathic" means they have no idea what causes the disease. The first thing you think of is, how did I get this? Science is trying to find and answer and you will be asked about areas of employment and where you grew up. All this in an effort to pin point a common cause in sufferers. We can't lay the blame at the feet of smoking for this one but undoubtedly if you are/were a smoker, as Carl was, it had an effect.
Mexico, January 2009
Pulmonary fibrosis (PULL-mun-ary fi-BRO-sis) is a disease in which tissue deep in your lungs becomes thick and stiff, or scarred, over time. The formation of scar tissue is called fibrosis. This impedes the ability of the lung to absorb or process oxygen to the blood.
Carl was originally diagnosed in 2009. We had no idea what exactly that meant. Life expectancy is 3-5 years, there is no cure. Oxygen therapy is essential to function. A lung transplant is the only solution.
IPF (short form) cause a deep hacking cough. I was buying "Fisherman's Friend" cough lozenges, 10 packs at a time. His prescribed drug, Prednisone, was increased and finally after weeks of coughing, he has relief.  Carl was hospitalized in July 2012 with a lung infection and upon release from hospital was on O2, 24/7.
We were at an appointment with the Respirologist when Carl suddenly asked, "What about a lung transplant." We were pretty sure that the answer would be, "No, you are too old." The Dr said that that would be an option if we were willing to go through all the testing but he found most people did not live long enough to be approved. Not exactly the encouragement we were hoping to hear.
We decided to forge ahead!
posted by Susan

Sunday, 24 February 2013

Hello everyone!

Welcome to my blog. It has been very difficult finding answers to some of my questions about Idiopathic Pulmonary Fibrosis. Our purpose with this blog is to share this journey back to good health with those who are experiencing the same challenges and to further awareness of the need for organ donation.
In a nutshell we are waiting to complete the evaluation process for a lung transplant in Toronto. More on how we got to this point in later posts.
Please post comments, encouragement is always welcome and we will do our best to share our experiences. We are not doctors we can only pass on information as pertaines to my case, helpful blogs, internet links etc. Your healthcare provider is the person you need to talk to about your specific medical questions. So, stay tuned!