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."...my 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."

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.

... 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. 

Patience

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. 

 

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 ♥

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. ♥

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 ....lol"

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.