I started this post back in August after my 6 month assessment. I failed to complete the publish and now almost 3 more months have past and I have to re-call everything that has transpired over this time period. It is a good but challenging exercise to re-count and share … honing those cognitive skills ..
6 months post transplant has brought fewer trips to hospital for blood work and pulmonary function tests. Now I test just once a month rather than every 2 weeks until I hit my 1 year anniversary.
I am cleared of the two infections I had during the summer, and I continue to add activities to my physical routine outside of the day-to-day errands, household work and dog care.
Clinic assessment days bring together ‘lung buds’ that were in pre-transplant and surgery roughly same time as myself. This time I was strong and healthy enough to join a group of them (along with some of the most loving and strong-willed support folks)…. for tall tales and friendly banter. Sharing stories and comparing recovery notes.
My new favourite anonymous quote:
“The soul needs gratitude, love, connection, community, reverence for life and an outlet to express itself creatively. When those needs are met, happiness follows.” Below are a group of some of the happiest people on Earth!!!!
Stairs, Hills and crawl spaces! All fears and nightmares in the past; now there are more stairs, steeper hills and longer walking distances outside of the treadmill! After I was cleared in clinic, we flew to Newfoundland for a wedding….
Took another road trip back to Minnesota with Bro-in-Law, Kurt and the Dogs. Time to start planning fall clean up of the lake house, time to spend with Dad and his bountiful garden harvest, more fun with friends & family, outdoor fires, smores’, fireworks, walks in the woods and 5K walk down road; albeit lonely without Scott who is not able to be here at this time.
Angus the eldest dog, is very weak as he is nearing his end of life. I have the two pooches with me pretty much 24/7. They just like to hang out.
Anonymous Quote- The soul needs gratitude, love, connection, community, reverence for life and an outlet to express itself creatively. When those needs are met, happiness follows.
September ended with sadness as we lost our friend Karen from post-op complications following her double lung transplant in July.
I am comforted by these words from my friend Pat,
“All of you strong and brave, amazing people who go through an organ transplant, and especially a double lung transplant; take a huge leap of faith and trust to have a chance at a new life “
and one of Karen’s favourite quotes,
“We must be willing to get rid of the life we planned, so as to have the life that is waiting for us. – Joseph Campbell
We have her smile to keep with us always….
Breath easy my friend… it has been an honour.
I first of all want to dedicate this post to my friend, Karen, who just went through the operating room doors ( 3pm EST July 14) on her way to receive the Gift of Life. I have been part of her support team and the last two months I’ve been able to help her occasionally in the physio therapy room as she kept her body strong for surgery. She listed the week after I received my lungs. She is strong and has a wonderful care team that I am proud to be part of.
I now know what it must have felt like for all of you, family and friends! The waiting time while on “the List” and then the anticipation of whether the possible match was viable, and now the surgery, and then recovery.
I woke up at 3AM (prednisone can do that to you) checked my messages and saw that Karen got the call last night. She is now in the hands of the best of the best. She can rest while they do their work. I look forward to seeing her when I get back to Toronto and look forward to helping her in her post transplant journey.
Meanwhile, I’ve been out here at Games Lake in Sunburg, Minnesota for 3 weeks now. The last 2 1/2 weeks were filled with family & friends visiting, holiday celebrations and the annual Stroh family reunion at Uncle Ben and Aunt Kathy’s lake home. Being Duo Citizens, Scott and I had a lot of Independence celebrating to do and visiting with all the people who were part of my hands on team as well as those who were there in spirit and moral support. Things have now calmed down, and Scott is back in TO for a couple weeks. I look forward to more friends coming to visit and sharing with them what I could only observe a year ago.
This past year has given me life, there are several folks very close to me who had loss, who have given me strength even though they were in pain. The Stroh family, Caroline, Shannon, Ben, Kathy, John, Anne and the rest of the Stroh Clan –for Cousin Steve; Katie Malone and the Malone family— for Jim Malone; Mike Edwards, Sue, Courtney & Hailey— for their Aunt Borgie, Keith Cormier…The love of his life— for Eileen, the family of my donor— My donor.
I am reminded to slow it down a bit, as the healing process is still happening, I have a fungal infection that is being treated and now a bacterial infection that I will start to treat tomorrow. So needless to say, I’m learning what “immune-suppressed’ means. I find that when I go outside, the world is very full, but overwhelming, I think I can jump back in, but I get a heart flutter every time I try something I haven’t done for such a long time.
The world has opened up for me again, but it’s heavy, and I’m so used to being confined, that I’m a bit skittish . I’m not Atlas yet …in fact i can barely hold myself up in downward dog! But I none-the-less feel better and more confident each day. I’m Alive! and as Scott reminds me, ..since the moment we were told that lungs were available, every day, every hour has been better than the one before. Two years of relentless descent ended and the walk back up started. He is a wise man, that Mr. Dyer.
New life is everywhere, the prairie grasses and wildflowers are progressing, the female turkey and her chicks were outside my window this AM, the doe has brought her fawns close to the house. Both mothers are very aware of the ‘humans’, they know when you are looking at them…don’t even try opening a door or window for a snapshot…they are off and running.
I have posted a visual update, may have gone overboard, and I didn’t even get to every one. Lots of hugs, gratitude and thanks!!!
Went to Minnesota for a week to prep the Lake House for summer. Last year I mostly sat on the porch looking out and wondering if I’d ever be able to partake in all the fun activities that we had planned when we developed the property.
As my disease got worse, I sometimes wondered if I even cared to walk in the woods again, or sit on the dock and fish or climb into the boat or garden. Once I got there and took my first walk on the path through the woods and didn’t feel overwhelmed it occurred to me that I could do these things and really wanted to do them again New beginnings for all of us….
Last week May 6th – 10th I was at Toronto General 4 out of the 5 days doing out-patient tests for my 3 month assessment. Now the doctors will not need to see me until another 3 months have passed. I will continue to do blood work and breathing tests every two weeks to keep a watch on my blood levels so any signs of infection or rejection can be dealt with in an efficient manner. I’m doing great! That’s all anyone can say!
It was a long and exhausting week with fasting and poking and tubes down my nose and throat. In light of all that it was inspiring and humbling, because it was also anniversary week for other fellow transplant recipients who were there for their 3 month, 6 month, 9 month, 12 month and even 2 years! The happiest people on earth I swear!
Supervised Physio Therapy is over. I now will be continuing a regular exercise program on my own to continue to build my strength and keep my bones healthy. I will miss them, they were the nicest, firmest group of medical professionals. They had the perfect balance of gentle and firm that I needed to get back into living a physical life. As Carmen a fellow transplant recipient commented, “Your pushed out on a floating ice berg, Swim Nemo Swim!”
Over the past 12 week period I worked up to 4% grade at 3.5 mph on the treadmill. Which gave me the strength and stamina to do the stairs from the seats at a Jay’s Game! (with no recovery time needed) Prior to the transplant I could walk at 0% grade at .5 mph and still needed to recover after less than 20 minutes because I couldn’t pull in enough oxygen to keep the muscles pumping the oxygenated blood to my extremities.
My xrays continue to be one of my favorite tests to check, as they give me such a clear idea of what I had in my lung capacity in the past and what my new lungs now give me.
Comparing the pre-transplant lungs from January 2013 with my clinical check up in March and then this last check up at 13 weeks. The Dark space is oxygen, the white spidery lines on the first X-ray are the fibrosis and scarring. all clear now! See how you can see my stomach on the right side of slide 1? That is because the lung tissue has shrunken up and revealed it. It is covered in slide 2 and 3 as the lung is full size again and covers the stomach.
I went to Minnesota to surprise my family for my brother, George’s wedding. At breakfast I was surprised by my first caregiver, Kelly, who gathered a group of friends from Minneapolis to celebrate my 3 month anniversary. It was pure joy and surprise for everyone!!!
And the one surprise that I couldn’t resist was for my sister, Sue Ann, who spent several weeks caring for me and traveling through the darkest times with both Scott and me.
Yesterday was Easter Sunday. It was my Resurrection Day!
That clever comment came from Scott’s cousin who has been very supportive and knows what having a transplant in the family can be like as her brother is a 10 year heart transplant survivor.
This begins Week 7 of my 12 week post op follow up. I’m working toward my first milestone of 3 months. The program involves 3 days at physio therapy and 1 day of tests and clinic follow up with one of the doctors in the program.
Some progress up to this point:
Week 4- Nieces Eleanore and Sarah were here with me. It involved running errands, and trying out a couple new restaurants for lunch. Along with some fantastic meals and deserts cooked up by Eleanore. Weight is stable.
Courtney was here for my second bronchosopy and my increased walking speed! There is an hour prep prior to the bronch procedure. They freeze the throat so the doctor can insert a scope that has a camera and a tweezers on the end. They take pictures of the airways to make sure the stitches are healing and there is no infection. They also grab a tissue sample to look for any early signs of rejection.
When I mark on my chart that my legs are not fatigued beyond a 4 out of 10 then the therapist adds to my challenge by increasing speed or grade or both!
Prior to my transplant I was at a low of walking (1/2) mph until my oxygen level dropped too low and my recovery was long and full of coughing at which time they had me stop the treadmill altogether and just do the bike. So 3 mph is very exciting.
End of week 5 clinic- This chest x-ray comparison is a reverse of the negative. The lungs on the left are my new lungs. The white space would be the oxygen mass occupied by the lung, the lungs on the right are my old lungs taken just prior to my transplant date. You can see how they have shrunk in size and the functional area was quite small.
Each week I can see more positive space on the ‘gifted’ lungs.
Week 6 My brother Mike was here for this week. No Clinic just physio and some tests. I am still on a weight restriction for lifting which is 10 lbs or less so Wally has to be carried down by someone other than myself. Angus is under 10 lbs. Both Wally and I will miss Mike…
My sleep patterns are still a bit sporadic but the one thing I don’t have any longer are nightmares about stairs! And I’m looking forward to tackling the ones at Rogers Centre this week when the baseball season begins. Slow and Steady!
On Saturday February 16th the Doctor came by and said, “would you like to go home”? I was a bit gobsmacked, I looked at Scott and Kathy and said, “sure”. My lungs had cleared, I was capable of walking out, my medication was set until next visit, and they knew I had a top notch support team to get me out the door. What better place to avoid an infection then in the hospital bed anyway !
Home is clean, quiet and with my immune system at the lowest point, it’s much safer here. As i continue to re-build my body, the system will get stronger. I will always be slightly compromised, susceptible, but the program teaches you how to live your new life normally.
Toronto General will continue to follow me for the rest of time. More frequent the first 3 months, then the first year, and then it is anniversary after anniversary . I was happy to give up my bed so they could continue to save lives and give someone else room to heal.
Coming home was pretty surreal, walking around the house into rooms that I hadn’t been in months. I am like a toddler with my walk, but the physio continues here and I’m right back at the Transplant Physio room at the hospital on Friday.
I feel like a new mother, not quite sure what to expect. As my Aunt Kathleen says, “a new mother with twins!” They are precious and I’m taking good care, taking it slow on the come back, but I’m working my way to communicating with everyone as I get stronger.
I am channeling all the positive energy and thoughts from everyone. That has been the best gift, words of encouragement.
As well I draw on my dad’s resilience. He is a rock and I am thankful for his example. One of my heroes!
During my “dark” week (1st week post op) and as I continue to rebuild this body, I have thought often about my cousin Steve’s humour and will to get strong, stay strong. He fought the good fight for four years, getting up off the mat every time he got knocked down, all the while with a joke and smile.
Again, I want the donor family to be proud .