Sometimes there is nothing left to do except quilt...
Last year I had some trouble with a pulmonary embolism (PE). I ended up referred to a hematologist who put me on blood thinners. I was having a lot of trouble with shortness of breath around the same time so wasn't in the best shape. I'm blaming that for why I made a mistake with my medications and stopped taking them too soon after completing the second bottle of pills.
Several months later I was due to see the hematologist again and had a lung scan prior to the appointment. When I saw the doctor in early February 2019, he told me I now had a clot in each lung and he was upset to learn about the medication mistake. I was promptly put back on them and stayed on them until the summer.
Happily the PEs cleared up and the hematologist was happy to not see me again for a year. That was in August 2019.
Then the Congestive Heart Failure Clinic arranged for a respiratory stress test in mid September along with a referral to a respirologist. I saw him in early October. Apparently there was residual concern among my cardiac care team that I might have a condition where I spontaneously create PEs.
Testing for this condition was delayed until the new year due to my gall bladder issue in mid October 2019. I had the tests and was booked back with the new specialist on February 25, 2020. I was sure there would be no surprises. After all, since my heart was still quite damaged with a low ejection fraction, my lungs must be why I was doing as well I as I was: they were obviously adapting to the reduced blood flow.
The doctor told me the good news that I did not have the condition that prompted the referral to him; however, there was another issue. Seems I have cysts in my lungs, but not on my abdomen or pelvis. And this is a rare condition called lymphangioleiomyomatosis (LAM).
If you look this up, this is what you will find:
"...is an indolent, progressive growth of smooth muscle cells throughout the lungs, pulmonary blood vessels, lymphatics, and pleurae. It is rare and occurs exclusively in young women. Symptoms are dyspnea, cough, chest pain, and hemoptysis; spontaneous pneumothorax is common."
"The drug sirolimus can slow the lung disease LAM, while also causing potentially fatal complications after lung transplants. ... LAM occurs almost exclusively in women. An abnormal growth of muscle cells invades the lungs, eventually causing airways to become obstructed."
So any thoughts I had about resurrecting my business sometime down the road after a heart transplant are done. While lung transplant often becomes necessary with LAM, the cysts can return in the new organs. Guess in some ways this is no different than having a heart transplant: it is no guarantee I won't have another SCAD.
So now I have two complex conditions. The bright side is that I have very few symptoms (yet) of the latest addition. The long term prognosis from symptom onset for LAM is 80-90% at ten years, and the median is 30 years. But it's the loss of lung function that has me worried as I've been depending on it because my heart is so damaged. It's one thing to have a weakened heart. It's quite another to have a weakened and lungs.
And I don't know if this new condition will undermine my ability to get a heart transplant, let alone a lung transplant.
So today, my 57th birthday has been a day of contemplation. I'm slowly working through my anger about this latest development and trying to find my way forward. Whenever I've been confronted with unexpected news like this, I usually take on a project. Something that will keep my conscious mind occupied and feeling capable while my subconscious chews over stuff.
The past ten days I've been quilting (or more accurately, resurrecting unfinished projects from a few years ago). Working with the gorgeous fabrics and focusing on the task in front of me has been the distraction I've needed. And I expect that trend to continue in the weeks ahead.
It will be a week or two before I get in to talk to my care team about these new developments and I need to keep my wits about me in the meantime.
I'm posting a picture of the quilt top that emerged from last week's percolation. It brightens my mood just to look at it.
Several months later I was due to see the hematologist again and had a lung scan prior to the appointment. When I saw the doctor in early February 2019, he told me I now had a clot in each lung and he was upset to learn about the medication mistake. I was promptly put back on them and stayed on them until the summer.
Happily the PEs cleared up and the hematologist was happy to not see me again for a year. That was in August 2019.
Then the Congestive Heart Failure Clinic arranged for a respiratory stress test in mid September along with a referral to a respirologist. I saw him in early October. Apparently there was residual concern among my cardiac care team that I might have a condition where I spontaneously create PEs.
Testing for this condition was delayed until the new year due to my gall bladder issue in mid October 2019. I had the tests and was booked back with the new specialist on February 25, 2020. I was sure there would be no surprises. After all, since my heart was still quite damaged with a low ejection fraction, my lungs must be why I was doing as well I as I was: they were obviously adapting to the reduced blood flow.
The doctor told me the good news that I did not have the condition that prompted the referral to him; however, there was another issue. Seems I have cysts in my lungs, but not on my abdomen or pelvis. And this is a rare condition called lymphangioleiomyomatosis (LAM).
If you look this up, this is what you will find:
"...is an indolent, progressive growth of smooth muscle cells throughout the lungs, pulmonary blood vessels, lymphatics, and pleurae. It is rare and occurs exclusively in young women. Symptoms are dyspnea, cough, chest pain, and hemoptysis; spontaneous pneumothorax is common."
"The drug sirolimus can slow the lung disease LAM, while also causing potentially fatal complications after lung transplants. ... LAM occurs almost exclusively in women. An abnormal growth of muscle cells invades the lungs, eventually causing airways to become obstructed."
So any thoughts I had about resurrecting my business sometime down the road after a heart transplant are done. While lung transplant often becomes necessary with LAM, the cysts can return in the new organs. Guess in some ways this is no different than having a heart transplant: it is no guarantee I won't have another SCAD.
So now I have two complex conditions. The bright side is that I have very few symptoms (yet) of the latest addition. The long term prognosis from symptom onset for LAM is 80-90% at ten years, and the median is 30 years. But it's the loss of lung function that has me worried as I've been depending on it because my heart is so damaged. It's one thing to have a weakened heart. It's quite another to have a weakened and lungs.
And I don't know if this new condition will undermine my ability to get a heart transplant, let alone a lung transplant.
So today, my 57th birthday has been a day of contemplation. I'm slowly working through my anger about this latest development and trying to find my way forward. Whenever I've been confronted with unexpected news like this, I usually take on a project. Something that will keep my conscious mind occupied and feeling capable while my subconscious chews over stuff.
The past ten days I've been quilting (or more accurately, resurrecting unfinished projects from a few years ago). Working with the gorgeous fabrics and focusing on the task in front of me has been the distraction I've needed. And I expect that trend to continue in the weeks ahead.It will be a week or two before I get in to talk to my care team about these new developments and I need to keep my wits about me in the meantime.
I'm posting a picture of the quilt top that emerged from last week's percolation. It brightens my mood just to look at it.
Happy birthday Katherine! Sounds like you have your hands, your mind and soul full of worries. You are in my thoughtts.
ReplyDeleteLisa