This has been another good week, so there is not a lot to update. I am still making slow progress in the right direction. Putting on a little bit of weight each day, building a bit more muscle as we keep pushing our daily walks a little bit more. I am able to walk just over 30 minutes at a time, on 5 liters of oxygen. My doctors don’t really care about how much oxygen I use while exercising, as long as I am pushing myself and keeping my heartrate up. It’s not so much about the lungs anymore as it is about conditioning the rest of my body.
I have not talked to any doctors this week, so no news there, but later next week I have another appointment at the transplant clinic. I went to a Pulmonary Rehab appointment yesterday and they were pleasantly surprised with the progress I have made. It has almost been a month now that I have been home, which is longer than I thought I would have. I was discharged on May 30th and back then we were hoping I would be able to stay home for two, maybe three weeks. But here we are 4 weeks out and still feeling relatively well. These next seven days are going to be interesting. Over the next week I will be finishing up all the meds that were started while in hospital. I have already been off one of them for about two weeks, and so far so good. I will stop one more over the weekend, and a third, the most important one, will be peeled off at the end of next week. This will be a critical time period to see if any infection comes roaring back, or to see if my immune system wakes up and begins attacking (rejecting) my lungs again. This is kind of what my doctors expect to happen (hence the reason I am ready to be placed on the waitlist at a moment’s notice). There is the outside chance that I keep poking along at this level, flying under the radar for a period of time until that other shoe decides to drop, we will just need to wait and see. Whatever happens in the next seven to ten days, we are very thankful for these past four weeks at home, and the weight and strength I have been able to gain during this time. While in hospital, I never thought I’d be able to get off supplementary oxygen the way I have (I only need to use it while exercising). Again, we appreciate all your prayers and support in all the different ways it comes in. This next week is going to be pretty delicate as we watch and wait to see how my body reacts to coming off these extra meds, but we will just need to take it day by day.
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(note, though this is posted on June 20th, it was written on the evening on June 18th, the anniversary of my transplant)
Today felt like the whole spectrum of time––past, present, future––came to roost in one day. It was a day to honour and reflect on the past, a day demanding itself be to intensely present, and it was a day asking to try and discern the future. It has been stretching. The Past: It was 14 years ago today, June 18th, that I received my double lung transplant. If my lungs were a person who just so happened to be born on the day of my transplant, they would be graduating middle school this week (congratulations Hailey!). 14 years is a long time, and when I am able to reflect on these past 14 years––blocking out the cloud that now hangs over life––I am so incredibly proud of my lungs. They have allowed me to accomplish things that I never thought possible. Physical feats like biking from the coast all the way to Alberta (twice!). They breathed me through attaining a master’s degree and becoming an ordained pastor. They gave me the calm and ability to care for Kim, my late wife, in her journey with cancer. They provided me the strength to return to our family business, to work alongside my dad, mom and cousin and become the strongest I have ever been in my life, feeling the healthiest I ever have. And over the past year they have oxygenated me to once again find the most amazing joy and hope in being able to fall in love and marry my wife, Carrie. My donor of course will never know what they have done for me, how their lungs have kept functioning and living, have kept giving. My donor has now been gone for 14 years - something that Carrie and I also reflected on––praying for their family and the grief they may still be experiencing. But as always, I do hope I have been able to make my donor proud in the life I have lived these past 14 years. I am incredibly proud of my lungs and the strength and resiliency they have shown. But above all, I am so thankful––thankful to my lungs; thankful to my donor. 14 years isn’t a lifetime, but a lot of life can be lived in that time, and I have tried to make the most of mine. The Present: The second demand of the day has been the present day and the present health situation I find myself in. As proud as I am of my lungs, I also can’t take more than a couple steps without being reminded that my partnership with these lungs is coming to an end. These lungs inside my body are not what they were just a couple months ago, and I have only my own body to blame for that. The immune system is one of the most wonderful things in life, a true gift of God keeping us healthy despite all the crazy micro-things that we come across every single day which could easily kill us without it. Unfortunately for me, it is this most amazingly innate thing of an immune system that is now trying to kill me, by trying to kill my donor lungs. Ironic isn’t it. And so, as I reflect on the past, I am also pulled into the present. I had transplant clinic today of all days, so there was a lot of focusing on the current state of my health. I had bloodwork which for the most part is fine. I had an x-ray which the doctor said looked good, but can’t draw any conclusions other than that it is not worse than the previous one (something to be thankful for). And I did my pulmonary function test which was very confusing because there is no way anyone would consider being transplanted with the fair numbers that I blew, but like everything, it is a lot more nuanced and complicated when you actually talk about oxygen exchange in your lungs (the thing that actually keeps you living) as opposed to the airway efficiency and capacity. Usually today, my transplantiversary, is spent reflecting on the past, remembering my donor, but today my time has had to be split. There has also been the demand to focus on today, the information gathered, trying to explain to my nurse and doctor how the last three weeks have been at home, how much I am exercising, how much oxygen I am using, how much I am eating and the wildly out of control blood sugars I’m experiencing due to my dietary uptick and shifting Prednisone levels. Plus, like every day, which is a focused primary on the present, trying to measure if and how today is different from yesterday and last week and two weeks ago. Carrie is much better than I in seeing this, so I mainly defer to her to spot and point out the differences, which I am thankful to say are all still positive. The Future: The third demand of the day was trying to discern the future. This goes hand in hand with my clinic visit. Thinking about the future - meaning the necessity (barring a miracle, which I do believe in) of needing a double lung transplant - isn’t something I actually think a lot about. Usually I am too busy with just focusing on the present. But when your transplant doctor leans over the side of the table in front of you, looks you in the eye and asks if YOU think it’s time to be waitlisted, if YOU want to be waitlisted now, it really catapults you forward into a very unknown time. Now of course my doctor was not forcing the question on me, he was wanting to see my reaction, wanting to know if I had strong feelings one way or the other––if I could feel it in my body what I was needing. He wanted to know if I felt I was still getting healthier, if I felt my body needed more time to heal and get stronger, or if I felt this was already taking too long and I needed new lungs ASAP. He trusted me and wanted to know my opinion. Before tipping his medical hand, he wanted to see my intuitive hand. In the end we both agreed that we would wait for now in terms of being waitlisted. We would give the unknown future some more time to unfold. He assured me I could be waitlisted at any time if things begin to slip, but I am still making marginal improvements each day, and he wants to see me get strong before undergoing such an invasive surgery. So yeah, a lot going on today. A lot of thinking, remembering, discerning. A lot of compartmentalizing––past, present, future––but also seeing how all three of these time frames are connected in the uninterrupted spectrum of time, that my donor lungs of the last 14 years have brought me into another beautiful day to be thankful for, and that they might still have a little more left in them to give. These lungs that I have been given have been absolute work horses. Time and time again they have risen to the occasion no matter what I have asked of them, often outperforming my wildest imagination. So today we decided to try give them a couple more weeks. Through graphs and numbers and pictures, through intuition and experience, we are able to see that even though their days are most likely numbered, they are still working harder and better than anyone thought they would. That even in their waning breathes, they are still giving me the gift of life, trying to set me up as well as possible for whatever is to come next. I meant to update earlier in the week, but even when functioning at the most basic levels of life, the days just seem to slip away.
I am still at home and things are still on the upswing. I am slowly gaining back some weight, slowly gaining back some muscle and endurance, and this week some of my oxygen dependency has been coming down. So much so that I can slowly walk around the house and yard without the need of supplemental oxygen. But life is obviously very limited. We are just focusing on the basics of getting stronger and trying to stay healthy. Eating lots of protein-rich food, trying to move around and ever so slightly increase my exercise tolerance, and then spending a lot of time resting. Carrie and I do get out most days, either to see our parents, buy me some new clothes (I am swimming in all my regular jeans), or of course getting bloodwork or going to other appointments. Just to reiterate from my last blog post, I am NOT on the transplant waitlist yet. My pre-transplant tests are all done, I COULD be waitlisted whenever needed (meaning whenever I start going downhill again), but as long as I am still getting stronger and maintaining, my doctors are just going to see how things go and how strong I can get. If you’ve had to deal with serious health challenges before, you will know that treating them is sometimes more of an art than a science. We know the destination we want to get to, we know the direction we will need to go, but the timing of each step, where each foot is going to be placed and the different valleys and mountains we will encounter to get there, are all mostly still shrouded in fog, until they are right upon us. The next couple weeks will be interesting as a lot of the meds that I am on, which have been used to treat the infections I’ve been battling, plus the rejection, will slowly be peeled off and stopped (one can’t live on this stuff forever). This will be a very telling time to see how my immune system responds, and how that might affect the timing of things going forward. Once again, we appreciate your patience with the gaps in time between some updates and the gaps in some complicated medical detail. We value all of your support, well-wishes and prayers. We would not be doing as well as we are without the support of you, our community. In Peace. George and Carrie. I hope I still know how to do this blog thing - I see that it has been awhile since I have done this. Well, we may as well just jump back into this and let’s rip the band aid off.
As many of you may know, or may have wondered about, life has changed a lot for me (and my wife, Carrie) over the past number of months. Since March, I have been dealing with some serious health challenges. This has included three hospital admissions throughout the spring, with the final diagnosis coming in mid-May, that I am in acute organ (lung) rejection. What does this mean? It means that I am going to need another double-lung transplant. It is as simple and complicated as that (I told you I was going to rip the band aid off). The journey to get to this serious diagnosis has been a trying one. It’s not as if my team of transplant doctors have never seen this before, but the way this has all gone down is not very common. In addition, the road leading to this diagnosis has had many diverging and criss-crossing pathways that at times made little to no sense. Like anything, in hindsight my doctors can see the through-lines of how the rejection developed. The speed in which it developed is still a bit mindboggling - and how it started a mystery. There is chance that I have been walking around with a dormant version of it well before first getting sick in March, and it just took a roll of bad infections for the stars to align, causing the rejection to finally show its ugly face in the past number of weeks. Now that we know what we are dealing with, it has been amazing to see the transplant doctors, nurses and specialists from all over come up with a plan, put that plan into action, and within two weeks be ready to activate me on the lung transplant waitlist once again. And that is the bottom line, that for the second time in my life, in order to go on living, I will once again need a life-saving double lung transplant. Now a lot of this has probably led to more questions than answers as it has for us as well. There are a lot of things still up in the air, a lot of things that only time will tell us, but here are some quick answers to some general common questions:
I will leave it at that for today. I will try in future blog posts to fill in a bit more of what the last couple months have actually looked like in terms of getting sick, but for now I figured this would be the easiest and quickest way to update you on what’s been going on with me. Your thoughts and prayers are most welcome and always appreciated. Carrie and I have felt incredibly supported and loved by our families and close friends who have walked the last couple weeks with us as we have been processing this next chapter in our lives. We have also felt the love and support from those in our wider community, who have known that I have been struggling these last few months, but have not yet had the full picture. We appreciate your patience as Carrie and I continue to work through what the present looks like, and also how the future may look. For now, we are just taking it day by day, waiting to see how the road will rise up to meet us. Peace to you. George and Carrie. |
George Keulen's BlogWelcome to my blog. This is a place to find periodic updates on life's ups and downs as I face some old/new health challenges. Some of the updates will be written by me, while others will be updated by my wife, Carrie. Archives
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