Richard's Fight for Lungs Fund
Richard hasn't allowed CF to define who he is. He's a go getter, setting goals, achieving them and never settling. He is intelligent, a top student in college having received the Governor General's Award with a GPA of 4.0 and he's capable of doing anything. His hard work and dedication and willingness to always go above and beyond is reflected in how he’s approached his career in IT and his family life. His sense of humor, however, is what draws everyone in. Regardless of what he's going through or how he's feeling, his sense of humor is always there; one of the many things I love about him. His pride and joy is his family. Married for 14 years and a father of three daughters (23, 9 y/o twins), they are who he fights each breath for.
A double lung transplant is Richard's only hope!
On May 30th, Richard and I will be in Toronto for the week to complete his transplant evaluation. A lung transplant is his only chance to regain his quality of life and be able to do things such as walking our oldest daughter down the aisle when she gets married, guide her and support her as she enters different stages of life, jumping on the trampoline and swimming with our younger two daughters, his chance to do what every father gets to do with their kids and to be there for them. It's a chance for us to grow old together.
Part of the requirements when on the lung transplant list is that we have to move to Toronto in order to be near the hospital and that Richard needs to have a support person with him. While waiting for new lungs, we will have to attend hospital appointments three times a week and also need to be close to the hospital when we get the call that lungs are available and Richard can have the transplant. This will also require me to take a leave from work to be there to support Richard and our daughters.
The money being raised will help with expenses while waiting for the transplant in Toronto. The money will be used to help with living expenses, medical equipment that may be required and medication that is not covered. As there is no way of knowing how long we will be waiting in Toronto, our goal is to raise enough money for a one year stay. We are hopeful that Richard will be able to get lungs quickly and that the time there will be shorter than a year. If it is, any funds left over will be donated to another patient in need of a transplant, so that they have a little less stress during a time that is already stressful.
At the end of October, 2015 Richard got ill and was taken to the ER where he was put on oxygen and home IV. With his oxygen continuing to drop and his condition worsening, we realized this was not one of his typical lung infections. The CF doctors asked that I drive him to St. Michael's Hospital in Toronto (4 hours away) where his CF team was waiting. Once in hospital he eventually stabilized, but by this point he had lost over 20lbs and his lung function had dropped significantly. I remained with Richard at the hospital for the first two weeks and then I returned home to be with our daughters. The week before Christmas, Richard spoke to the doctors about when he might expect to be coming home, hoping it would be in time to spend Christmas at home with the family. As the doctors were not seeing any real improvements in his condition they were not able to release him before Christmas. It was then we received the news that shocked us all. He was told to prepare himself for the fact that he might not recover from this lung infection and that he should discuss the option of a double lung transplant with his family. The three girls and I spent Christmas vacation in Toronto and we celebrated Christmas with Richard in his hospital room. There were a few serious setbacks and complications which occurred in the following weeks, but Richard pulled through and was finally released to continue his treatments at home in mid-January.
Richard remains on home IV and oxygen and will stay on both until he receives his double lung transplant. Prior to this infection, Richard's daily routine consisted of his nebulized inhaled treatments as well as 45 minutes of chest physiotherapy four times daily and oral medications while enjoying his family and working full time. Today he continues his old routine, however his oral medications have doubled, he needs to infuse six IV treatments daily and he requires the assistance of a bi-pap machine to help with his breathing while he sleeps. He also needs to perform cardio and muscle strengthening exercises to help rebuild the muscle mass that was lost while hospitalized which will be vital in the recovery after transplant. The long term use of IV antibiotics has also caused issues digesting foods making it difficult to maintain his weight and he needs to track his caloric intake to ensure he is getting enough calories and nutrition. He is also now having to deal with diabetes which was brought on due to one of the medications he must now take. His rigorous daily routine leaves him fighting for each breath, often tired and in need of naps throughout the day. Some days he requires assistance with showers, getting out of bed or getting dressed. He can only leave home once a week for his doctor's appointments, which we can thankfully do via telemedicine in Sudbury and this visit usually leaves him exhausted. Richard is no longer able to work and his quality of life, especially with his family, has been negatively impacted. He’s not able to do most things he used to with his family.
We are extremely thankful to those who are able to donate and thank everyone for their support! We are thankful that you took the time to read Richard's story and hopefully we were able to bring some awareness to CF and organ donation, if not for the greatest donation (lungs), Richard will not survive, for that, thank you will never be enough!
Donation can also be at any BMO bank by using the following information:
In Trust for Richard Viau
Account number: 3978-921
Transit number: 29472
Inst number: 001
We would love to know who made the donation, please advise the teller to make a credit memo with your name.
or you can e-transfer your donation to firstname.lastname@example.org
One year ago today we received the call that they had lungs. What a year!
Since the last update it has mainly been enjoying as much as he/we could. He had some great get togethers with family this summer; a lot of memories were made. One of the highlights for both of us was at the family baseball tournament where he ran all the bases. At the end of the tournament, he said, “for the first time my legs can’t keep up with my lungs”. It was amazing to see!
I know it has been a while since the last update and I will do a large update on Richard tomorrow on his one year lungaversary.
Today is about our donor and their family. A year ago today, they stood next to their love one and during their most difficult time they had the strength to make such a selfless act. It has been a year since they been able to be with their love one, stand with them, hug them etc... I can’t imagine the mix emotions they must be experiencing today. The heartache of missing their love one so much and wishing they could see them one more time, touch them one time, but the joy they may be feeling knowing that there is a family (possibly up to 7 other families) out there experiencing and enjoying life and who now have hope for the future.
They are the reason Richard is here with us today and therefore today is their day.
To our donor and our donor family, you are never far from our thoughts. There will never be enough words to express our gratitude. Thank you for the year you have given him and us, you have changed our lives forever, especially his. We can only hope that one day we meet and you hear those breaths again!
I truly do start these updates prior to the 16th of each month and then life happens. :)
March marked 6 months post tx and assessment month. He had a great assessment. We had a couple trips to Toronto for appointments and we have all the results.
Richard is REJECTION, INFECTION and PSEUDOMONAS FREE! The stage one rejection that he had at his last bronc has cleared itself.
During this bronc the doctor did notice one of the clips that our tx centre uses to attach the lungs has moved and is protruding within a certain section of where they attach the lungs. After conversations between the surgeon, the doctor who performed the bronc and the doctor in charge of his care, they came to the agreement that at this time nothing needs to be done. His x-rays and CT scan looked great.
We returned to the physio/exercise room for the first time since the physiotherapists discharged him from their care in December. Richard had a goal going into his 6 minute walk test...to make 700 meters, 15 meters more than his previous one. A goal that from what the physiotherapists have said, few people his height and age reach since you can't jog or run for the test. He made it to 700m!
During his test, other pre and post tx patients were watching, one lady was amazed at how fast he was able to go. She wiped away tears as she said, watching him brought her hope.
His donor had great lungs, Richard PFT continues to increase. He's over 100% lung function, a far cry from the 18-20% he was at tx.
His blood work was showing his kidney levels were high and remained high for a few retests, but have since returned back to normal range. We've seen this happen a couple times pre-tx, whether it be an indication that something is going on with his kidneys or just an error with the blood work, we'll never know unless the levels remain high.
His anti rejection level at times will run high for unexplained reasons. In March they again reduce his anti rejection target zone, allowing his body to build some immune system, but hopefully not enough for them to attack the lungs. It's a balancing act and for the most part they have it figured. From what we hear, it's not uncommon for the levels to run high at times. As long as they don't remain high for an extended period of time and is corrected as soon as possible, it should be ok.
At this point his assessments continue to be every 3 months, but blood work and PFT are now monthly.
In March he was suppose to see the dermatologist for his initial visit to check for any signs of skin cancer, however, just days prior to this appointment one of our daughters broke her leg downhill skiing and is in a full left cast up to mid thigh. We're waiting for the new appointment date.
At 6 months we looked back at were amazed at what he has been able to do, see and/or experienced. He saw his daughters' turn 10 and me another decade older. He experienced another Thanksgiving, Christmas and Easter. Physically, he has been skating, skiing, sledding, chopping and carrying wood daily, doing yard work, digging, out running our daughters and the list goes on.
April brings us to month 7!
He continues to do extremely well. There hasn't been much change since March. He's due for PFT and blood work this week.
This month Richard was able to attend a family hockey tournament. Such outings still don't happen often due to the risks that are involved when surrounded by large crowds, especially as cold/flu season isnt quite over yet. However, the arena was fairly quiet and therefore he was able to enjoy the tournament with his extended family, some who saw him for the first time post tx.
We hope everyone had an enjoyable and relaxing Easter. We always cherished the holidays, but we hold them these new memories just a little closer.
To our donor family, you are always in our thoughts and were held close to our hearts over the holidays. Thank you for giving us the chance to create more memories!
I know I usually post an update on the 16th of each month as that is Richard's lungaversary date, and I do apologize for not getting an update out sooner. It has been busy around the Viau home this past month. :)
First let me start with saying we are five months post tx! I was telling Richard this last stretch (month) has felt like the tx was at least a year ago, like we've had a lot more experience under our belt than what we actually do. I hope it means that we are getting use to our new normal and the ups and downs of tx life. It can be a difficult journey to navigate at times, but when you're on an up it makes those downs worth it.
I'll jump right into it as I know many of you have been wondering how Richard is doing.
The beginning of February Richard came down with his first cold/virus since tx. For those of us who haven't had a tx, a cold/virus isn't concerning, we don't feel great and at times may wonder if it'll ever end. We may even stock up on some over the counter medication in hopes that something will provide relief, but we recover fairly quickly with no issues. However, in Richard's case, the anti rejection medications destroy most of the immune system, leaving him with very little defense to fight a virus or bacteria that enters his system. This includes a simple cut, scratch and any airborne pathogens. His instructions were to get plenty of fluid, rest and honey.
When Richard had his CF lungs, we knew exactly how his body would react, therefore we knew what to expect and how to plan for it. With new, healthy lungs, but little or no immune system, we have to relearn how his body will react. What it can and can't fight and doing so without being able to take any over the counter medication to help relieve symptoms. Our guidelines are if he ever develops a fever of 37.5 or greater and/or a drop in his lung function of 10% than we immediately call our tx co-ordinator for further instructions. The highest his temperature got was 37.3 and his lung function dropped 8%. We stilled called our co-ordinator, however they weren't concerned and instructed us to hang tight to see if any other symptoms develop or his temperature increases or lung function continues to decrease. The virus has since past, all that remains is a slight cough. It's hard to say if the cough is because his rejection has progressed or if it's that cough that seems to hang around for a few weeks after having a virus. For the most part, he did well. He got plenty of fluid, continues to take the honey, the plenty of rest however, he needs to work on. :)
Having one under our belt, the next one will be easier.
He's been back to work for just over a month and it's going well. He's enjoying the challenges that it brings. When it comes to work, I don't think it's possible to stress him out. He lives for it and views it more as a challenge.
Richard's routine blood work is now bi-weekly and they've started to reduce one of his anti rejection medication levels. A little more freedom! Each time we get a bit more freedom it comes with mixed emotions. You become comforted in knowing "the numbers" and difficult to let go of the need to know, when it's been drilled into you. When most of the decisions are based on what "the numbers" look like, you learn quickly what the normal range is for every blood test they do. All these numbers become a part of your life and then they start taking those numbers away. Distancing yourself from results comes with a sense of uneasiness, we don't know for a span of two weeks what his anti rejection level is doing, if it needs adjusting or not, however it's two weeks away from anything medical related and extra time put towards enjoying the little things.
When Richard had his CF lungs, when he got a cold, virus or infection, as the disease progressed it would affect his lung function and he would never be able to regain the lung function he lost. 5 months ago, a drop of 8% in his lung function would have sent him into the ICU. He would have been placed on the ventilator and he wouldn't have left the ICU until lungs were donated. Today with healthy lungs, he is physically stronger and healthier that his lungs regained that 8%, sitting at over 100%!
Truly amazing how donated lungs can function better than some of us who have our original healthy lungs. Richard and I joke about it all the time, how his lungs are better than mine and it's true.
Now for the big news.
WE ARE HOME!
It happened quickly; we had two weeks to pack and move. On the 18th of January we found out we could move and on the 28th, we said good-bye to downtown Toronto. We have been settling back in to country living. Instead of looking out the living room window and seeing four hospitals and endless amounts of buildings, we now see trees and a lake. People watching here means, watching the ice fishers and people driving by on their ski-doos. :) No sirens or helicopters at all hours.
The girls are back in school and enjoying having a social life again. After not having to do the morning school rush for seven months, those first few days were not easy. :)
We celebrated the girls' 10th birthday shortly after returning. An incredible feeling for all of us. The girls loved seeing Richard slide down the driveway on a GT and crazy carpet. The following weekend we were able to celebrate with the rest of the family.
With Richard back to work, us being home, the girls back in school and settled in, all that is left is for me to return to work. March 1st is my back to work date. Richard likes to remind me that it's 1.5 months after him; however, i'm quick to let him know, he received the lungs, but we all got the transplant!
Now that we are home, our journey doesn't end. Next month we make a few trips to Toronto as part of his six month post tx follow up. He'll have the usual tests, bronc, blood work, xray, CT scan etc...I'll update as we have the appointments and get results.
We're never really out of the woods, but for us, right now, we can say we made it! We made it through! We made it home!
There is excitement in the air today.
There has been some rumblings, I can only assume it's because they are just as excited as we are and today we make it official.
RICHARD RETURNS TO WORK TODAY!
He has been looking forward to this day for nearly a year (since doctors told him he had to step away from work). Even though pre transplant the appointments kept him busy and exhausted, and post transplant keeps him busy, he would often say he was bored. He missed the challenges that work provided.
Returning to work means another step towards normalcy. It means as a father and husband he has that satisfaction of providing for his family again, it means a bit more freedom from living in the transplant bubble, it means being challenged and interacting with people who aren't in the medical field. It means many things, especially to someone who is a workaholic and career driven.
As soon as the rumblings started co-workers reached out to express how excited they were and look forward to his return. I can tell you each phone call, email, text message meant a lot to him.
To his co-workers in Quebec and those here in Ontario, he looks forward being in contact with you all again soon.
To his amazing team out in BC, we can not thank you enough for the out pouring of support you have provided from the beginning. Please know we are truly grateful. Once we are able to return home and are settled back in, Richard and I plan on visiting the team, but for now, all we can say is thank you!
I hope the team is ready to have him back as much as he's ready to be back, because he is now all yours! :)
We are so happy for the whole family!
Glad to hear the best of luck
Good luck Richard!
Thinking of you and your family today! Positive thoughts and prayers, and love...
Good Luck Rick - Positive thoughts, prayers and healing vibes being sent to you!