My blog about my husbands need for new lungs. Beautiful lungs received on January 29, 2013. Be an Organ Donor! One Oakville woman's journey as she navigates the transplant system in Toronto, Canada.
Keith and I have known each other for over 6 years. We met online, dated for a few months, and then circumstances found us in a position to buy a home together MUCH sooner than we expected. We threw caution to the winds, bought a house together, started a business together, worked amazingly well together, and were the best of friends. Inseparable.
Over the years, we settled in to a wonderful sort of sympatico - we got along exceptionally well, rarely fought, but when we did it was with good conversation and communication, and as for things related to his health concerns, I ensured that I was as informed as I could be, so that I would be his closest and most effective advocate, should the need arise.
As you all know, the need arose. And I rose to the challenge. You have all followed Keith and I over the past month as things escalated to the point where I was seriously concerned that my best friend was going to be gone from my life. I never wavered in my efforts to help him, and to help others. There was no other choice for me.
This morning, I donned my only colourful item of clothing (hot pink), and went to the hospital. Keith was not feeling well, had not had a restful night, and was in a lot of pain. My first hour there was spent ensuring that he had hot water bottles for his sore arms and shoulders, and that his pain meds would start to kick in.
I let him rest in bed, and I was working at the computer when he told me that he wanted to reach over and touch me. He had to push his table out of the way, swing his legs over the side of the bed, and I saw him grimace as the movement caused his pain to come back. He walked two steps to where I was, and lowered himself down onto one knee. As he took my hand, I looked at him and he very simply asked "Will you marry me?"
As an aside, throughout this and for the past few years, I have always referred to Keith as my husband. For all intents and purposes, he is. We are common-law, and in the eyes of the government, we are married. Keith and I both came from previous relationships, and certainly for Keith - he had no interest nor need for any sort of formal declaration or paperwork in order to prove how he felt about me. Over the past few years, this has come up, and it was the one thing that he would not budge on. We both agreed that this was the status quo, and that what really mattered - was that we were together and loved each other.
My first reaction was "are you serious?" - romantic huh? But really, this man had told me repeatedly that he would NEVER get married again. He had made friends promise to take him out to the barn if he ever did this again. Thankfully, his two best friends have been informed, and have promised NOT to follow through on their promises. I asked him why he was doing this, and he said it was because he really wanted me to be his wife. He had had a lot of time to think while he has been going through this whole ordeal, and told me that he was so amazed at how I had handled the past few months, and the past month in particular. He has been given a new life, and he wants to spend the rest of his life with me.
I said "yes." I love him.
Somewhere out there, there is a family that I have to thank for this. Thank you so much. I wish that I could find a way to tell you how much this gift means. I hate that it came at such a price for you - it is my daily prayer that you can find peace and know that your loved ones lungs are cherished.
To bring you up to date, I thought I would post an update with some of the things that have happened this past week. Keith was assessed with a swallow test a week ago to see how he was swallowing (after having been intubated for a week, and on a trach tube after that, it was imperative that he was swallowing food, and it was going down the right tube! All looked pretty good, except for a few bits that weren't making it to the right spot, so he was put on "similar consistencies" for food choices. No nuts for this guy for a while!
On Friday, February 8th, the skies opened up and covered the city with white. It was beautiful to watch, but came at a time when Keith really needed me close. Keith was 10 days post transplant, and really beginning to feel the pain of his incisions and staples. Medications were still being adjusted, and gaps in pain meds really left him uncomfortable - no wait, in tons of pain. My car was in pain too, as you can see, and THAT was lots of fun to deal with at the end of a long day. (I can complain too, right?)
On Friday evening, a nurse came up to Keith and I in the hallway and said "I've been reading your blog!" to which Keith smiled in his new "I'm kind of a rock star now" way, and chatted with her. Her name was Roxanne, and she wanted to come by the following day with a couple of her students and change his chest dressings. Bring it on. What a great girl and she and two students (one from DeVry and one from Sheridan) took great care with Keith and got his dressings all cleaned up. The nurses here are awesome.
Sunday was an exciting day. Keith said goodbye to his trach tube in the morning. Dr. Leanne Singer did the honors, and later in the morning Keith's nurse Christine tidied up the trach site and covered it up with a bandage. This was crucial because it was visiting day! Keith was pretty excited when lunchtime came around, and we decided to head down to the food court and grab a corned beef sandwich from Druxy's. HUGE joy on his face as he ate the first "non-hospital" food in weeks.
Later on Sunday afternoon Keith finally had the opportunity to see his kids who he has not seen for over 4 weeks. They were overjoyed to see him and have a lovely long chat in the atrium here. Bobblehead Yoda and Darth Vader were gifts, along with some great handmade Get Well cards. I know that it was wonderful for Keith to finally see his kids after all of this, and to give them all big hugs.
They are so appreciative to have their Dad back, appreciative of the incredible gift that he has been given, and that they get to enjoy. It is times like this that we truly remember the circumstances surrounding this gift. The thanks extends beyond Keith, and I, it is a whole family and friend network who are thankful each and every moment for the gift that he has received.
On Monday, Feb 11th, Keith experienced some issues with an elevated heart rate, reduced oxygen and was feeling feverish (although did not have a temperature). The doctors did an x-ray and EKG and determined that it was possible he had an infection, which they are treating with a broad spectrum antibiotic. By today he was feeling slightly better, although the pain of the incision site is still strong. Medications manage this for the most part. He was out for a 6 minute walk test today, and walked 325 metres. I'd say he nailed it!
Lungs for Keith to Breathe
The Facebook page continues to grow, and be a place where we can share the daily goings on for Keith. While I try to post as often as I can, Keith's rehab is the priority right now and I cannot always post there.
What is amazing, is the number of people who have messaged me privately to ask how Keith is doing, and offer help. Many of these people are students who have been touched by Keith's story, transplant patients both pre and post who remember how it was for them, and people who are moved by the importance of organ donation. People who never thought about it before, but having heard Keith's and so many others stories, are moved to make a difference.
As we continue this journey, we will continue to ask everyone a favour - the next person you are talking with, whether it is the teacher at your child's school, your parent or relative, or a stranger you are helping on the street, - please remember that there are thousands of people waiting for organs in your province - your country. Even a simple conversation about how you have been moved by this story and are trying to raise awareness about the importance of double checking beadonor.ca in Ontario to see if you are registered. We CAN make a difference and raise the numbers of people registered. If you tell one person each day, who tells one person, more people will have the conversation and we will continue to spread the word.
YOU CAN SAVE LIVES!
On January 17th, Keith was brought to TGH, on a ventilator, unable to speak, his body ready to give up.
Years of deterioration and infection had rendered his lungs completely unable to power his body anymore. Keith had the will to continue, but his body was not cooperating.
For 12 days, Keith was in and out of coherent thoughts. Days went by when he was merely a shell, with a machine that breathed in and out for him, his mind addled by medications and his body fighting to keep him here.
When I was with him, I was strong. When I spoke to family and friends, I was strong. The nurses, media, and strangers couldn't believe how I remained calm, dignified, and even smiled and laughed when I was with him. How did I do it?
A few weeks before Keith was admitted, an old school friend told me she wanted to give me something. A talisman. I admit, I figured I was going to get some smooth rock carving made by an inuit. I had no idea. Two days after he was brought in, she brought by my present. It was a simple silver chain, with three charms on it.
Faith
Hope
Love
I'm a pretty simple girl when it comes to jewellery. I've worn the same gold chain for the past 13 years. I took it off, and put this on. I touched each talisman and said the words to myself, and then out loud. This is what would get me through.
First - Faith. Faith in God, faith in people, faith in our doctors. I had to have it, otherwise there was no...
Hope. Hope that the call would come, that Keith would hold on, that life would continue so that
Love could continue. My mantra continued throughout each day. It charged me. It propelled me to continue to move forward. Faith. Hope. Love.
On January 29th, Keith received the gift of life in the form of a pair of gorgeous (I have on good authority) lungs. A simple decision that was supported by a family. There was Hope. My Faith continued to give me strength. My Love for humanity grew.
February 7, 2013
Keith is now in a room down on the 7th floor, less supervision, fewer bells and whistles connected to his body. No oxygen during the day, (possibly at night). Two chest tubes still in and his bad sense of humour firmly intact.
Now our hospital days are spent doing more walking, follow up doctor appointments, x-rays, more follow ups with doctors, getting some much needed rest (it's a much quieter floor than the 10th!) and healing.
Every day is a gift. Every moment is precious. And yesterday, Keith finally asked me about some timelines. He wanted to know why I was saying that he had been in the hospital for three weeks. I had to tell him that he had been here for 12 days, in and out of consciousness, and that I had been by his side for the entire time. He looked at me, puzzled, and began to weep. "How did you stay sane?", he asked. I pointed at my necklace. "Faith. Hope. Love. There was no other option for me, I have you back now.
Keith received the gift of life on January 29th, 2013. In a quiet evening and overnight, of reflection and anticipation, the gift was confirmed, and surgery began in the morning of the 29th. The surgery took 7 1/2 hours.
Three hours post surgery, Keith was extremely pale, fully sedated, and breathing with the aid of a ventilator from his trach tube. Having the trach, which he had received 3 days before (after a week on the ventilator) was a bonus as it meant that when he did wake up from the surgery, it would be an easier transition off the ventilator because if need be, he could be put back on with no need for intubation (through his mouth). As I sat beside him for a brief time, and held his hand, and watched him resting, his chest rose and fell, in deep full breaths, and the magnitude of what had transpired hit me.
Gratitude
There were new, donated, precious lungs in his chest. They were alive. Blood was travelling through them, oxygen was being converted to carbon dioxide and was ensuring that his body continued to function. A team of brilliant, talented and caring surgeons, specialists, doctors, nurses, orderlies, physiotherapists, nutritionists, coordinators, psychologists and countless others - had made it happen. My husband was right there, beside me, with warm hands and a strong body that I knew, was bound and determined to heal.
The following day, (lets call it Day 1) Keith was woken up approximately 10:30. It was my first look at him, in the eye, and when I did look at him, I knew that he knew. It had happened, and he was still there. While he wasn't smiling, he was still adjusting to a whole bunch of medication that keeps you pretty messed up for a while. He had also regained his colour and looked like the man I know!
Slowly, he began to get his bearings. His neck was quite stiff from being in one position for so long, so his nurse and I were trying to encourage him to move his head left to right. I was sitting on one side of the bed and encouraging him to look at me and move his head. His first note to me at this point (as he still could not speak) was that I was "too short" for him to look down at me. He's baaaaack!
He was quite tired, understandably, so Day 1 was spent encouraging him to breathe in a new way. Pre-transplant, Keith's breathing was quick and shallow, as that is all his lungs would allow. If you have been breathing a certain way for many years, your mind thinks that is how it has to breathe. We need to teach his mind a new way of breathing. Deep breath in...HOLD...full breath out - repeat. I did my best to practice deep breathing with him for a while, however drifting in and out of sleep, combined with the beginnings of some hallucinations, made it a challenge. He was still on the ventilator when I came in the morning, but was removed from it at 3:30 to allow him to begin to breathe on his own, through the trach tube. When I left at 6:30, the nurse said he would likely be put back on it overnight to give him a break.
Day 2 -
I arrived at the hospital at 9:15 to hear that Keith had not only walked the ENTIRE floor of the ICU, but had been dancing in the aisles with the nurses. People and doctors were commenting that he was doing exceptionally well for someone 2 days post transplant. I know that he was just overjoyed to be able to walk, straight and tall, and flirt with nurses. Did I mention he's back??? :)
I also learned that morning, that he had never been put back on the ventilator! This was amazing news. He had been on 32% oxygen overnight (which is 10% more than you and I take in) through the trach mask. He had been breathing, on his own 24 hours after his operation.
Day 2 was spent continuing to encourage him to do his breathing practice, lots of deep discussions with him about what a gift he had received, and additional interesting notes from him about the "goings on" in the hospital. I wont go into detail here about some of the hallucinations that he was experiencing, that will be another blog post. However, for those reading this who are waiting for transplant, be prepared. Some pretty crazy stuff happens in your head. Keith got frustrated at times when I could not understand what he was writing (because a lot of it made absolutely no sense) so I did my best to stay positive and keep him happy. He rested a lot.
He also began to fiddle with his NG tube (feeding tube that was in his mouth, going directly to his stomach) and chew on it constantly. No amount of telling him not to was helping. He did NOT want it in there. It was his only source of nutrition so imperative that it stay in until the doctors said it was okay for him to eat on his own.
Once a day, Keith receives plasmapheresis. See the WIKI on the link under this photo. Essentially, it is a transfusion to remove his blood, spin it to split the plasma from the blood cells, and reintroduce it with new plasma. This is done because Keith has a high number of antibodies in his "original" blood. He had multiple sessions of plasmapheresis during his 7 1/2 hour operation. The process takes about 1 1/2 hours each time, and he will have it for 5 days post transplant.
Day 3 -
Keith had decided that he did not like the NG tube in his mouth, and had removed it overnight. While it was lovely to be able to come in and kiss him properly, the nurse promptly inserted a new one so that he could get his feeds.
He was extremely confused this morning. Again, the hallucination post will be done when I can discuss it with Keith. I certainly don't want to seem like I am "making fun" of this period of time. While it can be amusing, the patient truly believes that these things are happening to him. I had to manage it so that Keith knew that he could trust me, and that I would ensure that he was always safe. I reassured him that everyone was taking great care of him, loved him, and only had his best interests at heart.
We took him for a short walk today, but he was extremely tired and did not do any dancing, and had a tough time standing up. He laid down for a nap mid day, and when he woke, he had removed his NG tube yet again. The nurse was trying to get someone in to determine that his swallow reflex was strong, and that he could finally eat! (and have a coffee)
By the middle of the day, he was more lucid, and we had a good discussion about where he was, why he was here, and how well he was doing. He sipped a little on water and a small medicine cup of coffee!!! The look in his eyes. Wish I'd taken a picture of that.
Day 4 - Eating and Talking!
Food - FINALLY!!!
After a terrific nights sleep, Keith has had a great day so far. He has had his trach tube reduced (yesterday) and can talk when he covers it with his finger. He's a little breathy (think the Godfather, but without the threat of a cow head) but understandable if you are close to him.
I took a chance and brought him up a Tims coffee this morning. Worried it might be contraband, I covered it on my way in. When the nurse gave me the OK, I showed it to Keith. He was overjoyed. We figured out that adding coffee to the liquid nutrition drink was the perfect high calorie, nutritionally sound "cappuccino", so we went for it.
Shortly after his morning "meal" (the first food by mouth in 16 days) he went for a tremendous walk. He walked the whole floor, waved to people, and smiled at all the ladies. There are lots of ladies!
We got back to his room and got him settled in his chair and early afternoon he was brought his first meal. For someone who used to take 2 hours to eat a meal, he completely surprised me. He was done in 10 minutes. Absolutely blown away. Watching him eat so quickly was absolutely incredible. He was hungry!
That brings us up to date. I'm taking a breather, and he is having a nap. Our continued blessings and thanks to the donor family.
