Snow
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@chaps54 Thank you very much for thinking of me. When I went for my surgery pre-op tests, which included an EKG, they found a hole in my heart that I’ve had since birth. So my total knee replacement surgery was postponed until my heart gets analyzed more. I’m not getting enough oxygen in my blood supply, which explains fatigue, brain fog, daily headaches, and why migraine medications don’t really help me. It’s kind of a blessing in disguise, but on Thursday last week, they told me I’d have a heart attack (not true), then I went for all the heart tests on Friday back at the hospital, but then I didn’t get to meet with the cardiologist until Tuesday at 4:45 PM, with only 12 hours notice before surgery that the surgery would be canceled. So they basically put my parents and I threw hell all through Christmas unnecessarily!
My top tip to share is never, ever schedule a surgery during the holidays. There’s hardly anybody around to help, especially if something goes wrong.
My next steps are to have my brain neurologist assess how serious my extra risk of stroke is, then to see a cardiac surgeon to get the hole closed. I’ve already had 23 surgeries in life, so I’m sure I would’ve been fine getting my knee replacement. But a number of things were wrong with my blood work as well. My parents and I all had bad gut feelings about the timing of the surgery so I guess it’s best in the long run.
I’m still kind of in shock about it. I mean, even though I would’ve been in the worst pain of my life after the surgery, and I was very scared about that, I found ways to look forward to taking three months off work, laying around in bed doing not much but reading and watching movies, getting some exercise in via physical therapy, spending the first week post-op with my mom staying with me, etc. Now all of that planning I’ve done so meticulously since August is moot. I imagine I’ll get back into my regular routines soon. It’s a lot of work to prepare for a joint replacement, and I’m just blown away that it was all for nothing. I feel disappointed but I also understand and think it’s for the best for now. Unfortunately my out-of-pocket max will be about double in 2024 what it was in 2023 so I will not likely be able to afford any joint replacements in the coming year.
One of the most amazing things about all of this is that I’ve had a 12 hour long sleep study before, including EKG monitoring. I’ve gone to the emergency room before with tachycardia in my 20s. In my 30s I had a bunch of heart stress tests because my heart did weird things when I was at high altitude backpacking. I’ve been on EKG machines during my prior surgeries. During all of those times, I was told there was nothing wrong with my heart. But now all of a sudden they’re telling me there’s been hole in my heart since I was born. Very weird! Kind of makes me want to sue my former cardiologist at UCLA!
I can’t believe there is something else “wrong” with me. I’m trying to figure out to age more gracefully and like a survivor rather than a victim.
My top tip to share is never, ever schedule a surgery during the holidays. There’s hardly anybody around to help, especially if something goes wrong.
My next steps are to have my brain neurologist assess how serious my extra risk of stroke is, then to see a cardiac surgeon to get the hole closed. I’ve already had 23 surgeries in life, so I’m sure I would’ve been fine getting my knee replacement. But a number of things were wrong with my blood work as well. My parents and I all had bad gut feelings about the timing of the surgery so I guess it’s best in the long run.
I’m still kind of in shock about it. I mean, even though I would’ve been in the worst pain of my life after the surgery, and I was very scared about that, I found ways to look forward to taking three months off work, laying around in bed doing not much but reading and watching movies, getting some exercise in via physical therapy, spending the first week post-op with my mom staying with me, etc. Now all of that planning I’ve done so meticulously since August is moot. I imagine I’ll get back into my regular routines soon. It’s a lot of work to prepare for a joint replacement, and I’m just blown away that it was all for nothing. I feel disappointed but I also understand and think it’s for the best for now. Unfortunately my out-of-pocket max will be about double in 2024 what it was in 2023 so I will not likely be able to afford any joint replacements in the coming year.
One of the most amazing things about all of this is that I’ve had a 12 hour long sleep study before, including EKG monitoring. I’ve gone to the emergency room before with tachycardia in my 20s. In my 30s I had a bunch of heart stress tests because my heart did weird things when I was at high altitude backpacking. I’ve been on EKG machines during my prior surgeries. During all of those times, I was told there was nothing wrong with my heart. But now all of a sudden they’re telling me there’s been hole in my heart since I was born. Very weird! Kind of makes me want to sue my former cardiologist at UCLA!
I can’t believe there is something else “wrong” with me. I’m trying to figure out to age more gracefully and like a survivor rather than a victim.
Archives1
Staff member
@snow Oh my, that is a wild and upsetting turn of events. I’m so sorry to hear that you have to go through this. Sometimes it just seems to never end. I’ve been there and had the same, just when it seems like you make a bit of progress something new kicks you.
It really bothers me that doctors ‘all of a sudden’ find something wrong that should have been noticed ages ago. Meanwhile who knows what might be have been happening to you.
Learning to be a survivor and not a victim is a huge step. For me it came down to learning to relish the good things no matter how small. Even if it is just simple tasks that others barely notice doing I count them as wins. Focusing on those good things and even laughing at all my issues has given me a more positive outlook. My body is what it is, I do all I can to help it but learning to accept what it is has allowed for healing.
I wish you the best for the upcoming tests and hope for positive results.
It really bothers me that doctors ‘all of a sudden’ find something wrong that should have been noticed ages ago. Meanwhile who knows what might be have been happening to you.
Learning to be a survivor and not a victim is a huge step. For me it came down to learning to relish the good things no matter how small. Even if it is just simple tasks that others barely notice doing I count them as wins. Focusing on those good things and even laughing at all my issues has given me a more positive outlook. My body is what it is, I do all I can to help it but learning to accept what it is has allowed for healing.
I wish you the best for the upcoming tests and hope for positive results.
Archives1
Staff member
Snow, I am so sorry to hear of all that has been discovered/raised its head and that you aren't able to get the knee fixed.
I had a friend who used to refer to where you are as the medical merry-go-round.
It is good to know these things are going on so they can be addressed.
This may seem like alot for now, and it is, but you will do well and soon will be looking back at at it all with a twinkle in your eye and a smile on your face.
You are a survivor.
I had a friend who used to refer to where you are as the medical merry-go-round.
It is good to know these things are going on so they can be addressed.
This may seem like alot for now, and it is, but you will do well and soon will be looking back at at it all with a twinkle in your eye and a smile on your face.
You are a survivor.
Archives1
Staff member
Snow, I'm very sorry to hear about your ordeal. I certainly hope that you are able to the heart problem taken care of ASAP so that you can go ahead with the knee replacement surgery.
I've had both my knees replaced (one at a time). Before getting the replacement surgery, I was in pain whenever I was on my feet. The pain after the surgery was certainly not any fun; but once I'd recovered from it, the knee pain was gone. GONE!
I've had both my knees replaced (one at a time). Before getting the replacement surgery, I was in pain whenever I was on my feet. The pain after the surgery was certainly not any fun; but once I'd recovered from it, the knee pain was gone. GONE!
Archives1
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@Justme Thank you for your perspective! I appreciate your tips. I tend to feel ashamed of my disabilities, largely because they’re not anything people my own age have experienced yet. I know I shouldn’t be ashamed by them because most of them were not my fault not my choice; I just have crappy DNA. The only conditions I have that occurred because of my own conscious behavior was when I chose to head toward the mountain cliff band that I soon fell off of when snowboarding that catastrophically damaged my spine and thus bladder. All the rest of my conditions happened because of my DNA. Accepting my body as-is, is something I’ll concentrate more on during 2024. Does anyone recommend any self-help books about accepting physical disability? I accept my mental health and personality pretty well; I just need to better adjust my attitude about my body to one of gratitude instead of anger and disappointment.
Archives1
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@chaps54 Thank you for your kind words.
@Inconinmiss Thank you for stamp of approval for knee replacements! I’ve had knee pain since I was 19, and severe, constant, debilitating knee pain since I was 34. Now I’m almost 48, and ready for a break in the pain!
Somebody told me if you don’t get your knee replacements done at the same time, the first one hurts so bad you will never go back to get the second one fixed. I’m glad to hear that in your case that was not true; you did go back to get the second one done even though the first one hurt! I will definitely eventually get all four of my joints (knees and hips) replaced, as soon as I can afford it again.
@Inconinmiss Thank you for stamp of approval for knee replacements! I’ve had knee pain since I was 19, and severe, constant, debilitating knee pain since I was 34. Now I’m almost 48, and ready for a break in the pain!
Somebody told me if you don’t get your knee replacements done at the same time, the first one hurts so bad you will never go back to get the second one fixed. I’m glad to hear that in your case that was not true; you did go back to get the second one done even though the first one hurt! I will definitely eventually get all four of my joints (knees and hips) replaced, as soon as I can afford it again.
Archives1
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@snow. I'm so glad they caught the hole in the heart as my brother in law was in Rochester for prostate surgery, all went well and he was talking to family after recovery and a massive stroke hit him. He was paralyzed on his right side (since has recovered from that) and major speech issues ( has not recovered from that) he has since retired. But yes a clot traveled through the hole in heart and into the brain. IT hurts me every time I think of all this.
Archives1
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@snow the statement "when it rains it pours" can be a reality but the rain eventually stops. You have such a determined spirit to take care of yourself, and you will. we are seeing your strength and resilience as you are faced with more obstacles. there is a book that is nice- titled "Everything happens for a reason" by Kate Bowler and Befriending the Wolf" by Milly DIericx. they are inspiring and a lot of times we may just need a thimble of inspiration so we can reach deep inside and find our own self motivation. You are beautiful, wonderful and you will get through this Snow. We know you will. Much love.
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