For those of you who want to know how I am doing, this is where I will be posting updates. If you are reading this, it is because a Campbell Family Member, Neil or I have given you access to it. I would ask that you respect my family’s privacy by keeping this information to yourself. Please do not share any of the contents I post here (photos, login info, etc) with anyone else.
Ok so where to start. As you know, I had a double lung transplant in April of 2012, and since then I have been able to accomplish so many things. I’ve knocked some remarkable items off my bucket list. I went back to school, I lived by myself, and stood by my sister on her wedding day. I did the CN tower edge-walk, took the train across Canada and went camping. I met and got engaged to Neil Young, the love of my life. I’ve traveled to Holland, Georgia, through the east coast. I have participated in a couple important documentaries about organ donation. I spoke publicly to thousands of people about organ and tissue donation. I even got a street named after me! Most importantly, I have enjoyed just hanging out and taking advantage of the amazing gift I have been given - time.
However, I have been in chronic rejection since May 2016 and have been listed for another double lung transplant. Picture me making a funny reference to being called a 'double double' when all this is over. Believe it or not, re-transplantation is a known possibility when it comes to lung transplants. If you'd like, you can refer to my list of FAQ's below. But first, here is a history of my health status for 2017 so I can bring you up to speed with what's been going on. (Updated regularly now that Hélène has had the transplant)
HEALTH STATUS (Updates below)
SEPT 2017 (Neil will be updating for now)
- Wed Sept 20 - Just a general update now, sorry for the delay/gap. Hélène is in great health and even greater spirits. She still has an IV central line in but is not on a constant drip. The new lungs are getting stronger and stronger every day. She's still walking daily but requiring oxygen on and off. Not to worry, this is a normal part of lung recovery. As she conditions the new lungs, they'll do the exchange better. She's been outside regularly and a few people have even come from Ottawa. To put all this into perspective; in 2012 when Hélène had her first transplant, she was in ICU for two weeks, step-down for one, regular ward for one and then readmitted after she was sent home for another two weeks. We are looking forward to rejoining the physio gang in the Lung Rehab room soon!
- Sun Sept 17 @ 17h00 - Dinner was delivered from Swiss Chalet from a friend back in Ottawa. Thanks, Dave!
- Sept 17 @ 14h00 - Hélène walked sans aide from her hospital room down to the gathering room on the 4th floor. Mary, Liza, Alan, Manon, Neil, Kevin, Jenn & Gracie had a late lunch with her and she did great. She also got all of her med lines removed. She is now tube and line free!
- Sat Sept 16 @ 14h30 - Hélène got the remaining two chest tubes out this afternoon! This is a huge step towards going home. We took another walk around the ward and all is well. Pain is minimal, fatigue level is well managed, her intake of food and fluids is back near normal. 8 days post surgery and she is well on her way to resuming a somewhat normal life!
- Friday Sept 15 @ 11h45 - She went for a walk with her physiotherapist today. She didn't use her upright supports but a walker under her own body weight. She walked around 120+ metres without stopping. This is all a positive step towards walking out of the hospital for good! Her meds were adjusted so that she doesn't spend her day as groggy-Hélène.
- Thurs Sept 14 - Nothing much to report today. A lot of the same. She's still doing great!
- Wed Sept 13 @ 17h00 - Hélène was moved down to the regular ward. She's a regular inpatient now! She is still in isolation but she's doing much better. Still she gets tired quickly but that's the recovery process.
- Sept 13 @ 10h00 - Hélène went for another walk this morning. She's making great progress and might be moving out of stepdown this afternoon.
- Tue Sept 12 @ 14h00 - Hélène had four chest tubes after surgery. Two of her lung drainage chest tubes were removed today! A huge step in the right direction. She spent the afternoon and night mostly sleeping and relaxing but she's feeling a lot better and the pain is slowly starting to fade. Manon and Alan went later in the night and Hélène got her nightly foot-rub.
- Sept 12 @ 12h45 - Hélène went for a daily walk around the ward. She's doing great!
- Mon Sept 11 @ approx 18h00 - Hélène was transferred to the stepdown unit! As the name suggests, the stepdown unit is a level of care that is below ICU. This is a big deal in the transplant process. You are healthy enough to go from one nurse for every patient to one nurse for every two patients. She isn't out of the woods yet but she's getting there. The Dr on staff rounds today said that Hélène was doing fabulously and everything number-wise was where it should be.
- Sept 11 @ 10h30 - She went for another walk around the ward. Wonderwoman!
- Sept 11 @ 10h00 - Hélène had her feeding tube taken out, a rather large IV near her left clavicle was removed and she was given permission for water and ice chips. Her swallowing ability was slow at first but by the end of the day, she was able to swallow her meds as she normally does.
- Sun Sept 10th @ 16h44 - Hélène was visited by the physiotherapist. He asked if she wanted to go for a walk and her eyes lit right up. Hélène went for a walk around the ward and she was a speed demon, all things considered. Manon, Alan, and Neil were all very proud. Today was a good day!
- Sept 10th @ 15h30 - Hélène's nurse called Manon and said that her breathing tube was out! She was still getting some oxygen but being weaned off throughout the afternoon. By 18h00 she was down from 4L to 2L.
- Sept 10th @ 11h00 - Noreen and Steve stopped by the hospital before they headed back to Ottawa. Hélène wished Noreen a Happy Birthday and they spent a little time together before they hit the road. The nurse said that Hélène should have her breathing tube out by the afternoon.
- Sat Sept 9th @ 19h00 - Hélène is now fully awake and aware of her surroundings. She's comfortable but drowsy. She's coherent enough and able to communicate with pen and paper. She saw Manon, Neil, Alan, Noreen and Steve. Her surgeon stopped by and said she was making great progress, and that the lungs were a perfect fit. We left her side around 21h30 for the night.
- Sept 9th @ 10h00 - Manon and Neil showed up to see Hélène. As she was coming out of sedation, there was a fair bit of confusion, agitation and anxiety. As the meds wore off throughout the day, she became more clear. Hélène had some visitors stop by around noon; Mary, Eli, Elizabeth, Alan, Noreen and Steve.
- Fri Sept 8th @ 18h00 - Hélène was moved to the MSICU at TGH. The typical intake procedure done by the nurses took place and they did their head-to-toe assessment of Hélène. They set her up on strict monitoring and are still keeping her sedated for a minimum 24 hours post-surgery. She was allowed visitors (family only) 2 at a time for brief periods. As she is on contact precautions while in hospital, a full gown, gloves, and a face mask are required at all times. Will update more as info becomes available.
- Sept 8th @ 16h00 - Just got word from the surgeon: Surgery went well. New lungs are already working on their own. Just shy of 12 hours in total. The surgery team is currently tying up loose ends and closing up the incisions. She'll remain sedated for at least 24 hours to avoid bleeding. There's a slim chance (10-15%) they'll have to go back in to close up some internal bleeding but all in all, it was a huge success!
- Thurs Sept 7th around supper time she got the call to come in for her second transplant. Both Neil and Alan left Ottawa around 19h30 and arrived in Toronto around midnight. September 8th at 05h30 she was wheeled in for surgery!
- On September 1st, she was placed at a higher priority for a lung transplant; Priority 3.
- My lung function dropped at a steady but slow pace. Co2 retention was still an issue. Physio was getting harder and I was sleeping more.
- I was readmitted due to increased Co2 retention. The next step was to move from CPAP to BIPAP. The BIPAP is a more efficient way to get rid of the Co2.
- The physiotherapists have observed that during my physio, my oxygen levels drop more frequently and severely. They will be monitoring my oxygen levels more closely.
- I was maintaining my physio and kept on gaining strength. All issues around my appetite were resolved. No real changes this month.
- Friday May 5th: With my health and lungs declining rapidly, I was listed for a second double lung transplant. For me, it meant relocating to Toronto and starting physio.
- My strength came back, and so did my appetite. By then, the odd Popsicle and Reese Bar were not enough to fill my new found desire for food.
- I had my 5 year assessment in Toronto and started the work up for a second transplant. I was admitted with persisting nausea and vomiting. Shortly after, I was treated for a fungus in my digestive system. Eureka! No more nausea! I had my first craving for food; a smoked meat sandwich and pickle.
JAN - MAR 2017
- Certain activities made me feel a little more short of breath than usual. I was in and out of The Ottawa Hospital with unexplained nausea and vomiting which resulted in many visits from uncle Bruce and Max the medic therapy dog. (Thanks Tracy!)
- I had a very little appetite. The odd Popsicle and blizzard here and there weren't enough... Near the end of March, I experienced a sudden change in my ability to breathe on exertion. I needed oxygen again. This brought up the discussion about needing another transplant.
- A typical lung takes in fresh O2 and exchanges it for CO2. Not only did I need oxygen, my lungs started retaining CO2. #BadLungs. An attempted remedy was a CPAP machine to remove the CO2. It worked!
MAY - DEC 2016
- A small decline in my lung function was noticed at my annual assessment in Toronto. I slowly felt short of breath more and more, my health team was aware but they were not concerned.
Here are some FAQ’s
How do you feel about needing another transplant?
You know, five years ago I swore I would never go through this process again. Some of my experience in ICU post-surgery felt traumatic. Similar to a mother's childbirth experience, the outcome outweighs the pain and suffering; they remain a distant memory. I have knowledge and know what to expect. I am ready to take it on! Sometimes, life throws stuff at you, and you just have to keep swimming.
Is the process the same?
Yes, the process is very similar.
When is your transplant surgery date? How long will you wait? What is that waitlist like?
Like my first surgery, there are no set dates. I am placed on a waitlist. I could be waiting anywhere from six months to two years. Many factors determine eligibility for a transplant. Picture an excel spreadsheet with all these different categories, blood type, chest cavity size, antibodies, health status, etc. Finding the perfect match might take a while.
Where will you be waiting?
I will be waiting in Toronto, same place I waited in 2012.
The priority scale is out of four(4). 1 being the lowest and 4 being the highest . 4 is rare.
What will you do with your time?
One of the requirements to remain listed is doing physio three times a week. That will keep me in tip top shape and ready when I get the call from the transplant team. I also will be exploring this city so if you've got any suggestions, let me know! iHalo Krunch has got some great charcoal ice cream (in case you're wondering).
What gets you through it?
Honestly, it takes three things to get through this. Faith, Family and Ferocity. I like to think I am pretty fierce haha (In a positive way!) I could not do this without the relentless support of my fiancé, Neil, my Family and Friends. I am so grateful to them. I can't tell you how lucky I am to have all the support to me. Also, music. Music helps a bunch so please feel free to share your tunes with me.
Love you bunches,