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."


  1. Wow! Thanks for the update, I was wondering how Carl was doing. I know it's stressful for you too so try to take good care of yourself as well. I'll keep both of you in my prayers and hopefully you will both be home before you know it. Gale

  2. Very scary! I hope he is doing better now and you too. Bob has been struggling with the side effects on the Pirfenidone and has decided to stay off of it until he feels better. This disease sure test our strength and our spirit! Thank-you for taking the time to keep us posted.
    Hugs and Prayers,

  3. Hi Susan, it's now a month passed the date of this post, and I'm ever so hopeful that you and Carl are busy walking back and forth to TGH for his post-transplant Treadmill Room program! We arrived home 6 days ago and have been busy cleaning and resettling at home.
    I'm so glad to read that you have Sandy there to be with you. I cannot say enough about the care we received from the TGH team of professionals. I also know that the support person is "on" 24/7 - there are no days off or down times, even when you aren't present in the hospital room with your patient. You are always mindful and planning as best you can for the next thing that comes along. As such, you must allow yourself the support of family and friends and be fiercely protective of any "me moments" that you can steal. Know that we are out here thinking of you and Carl...
    Hugs, Pamela

  4. How is Carl doing? Is he home yet? Hope all is well. :)