A decade ago, prior to an ACL reconstruction, a battle with cancer, and several medication related setbacks, I used to workout 5 days weekly. It consisted mostly of weight work with a little cardio thrown in for stamina. My body weight was lower then, than now and I could bench press more than I weighed. I could do squats, leg press, played tennis, and golfed. Not so much now.
However, I am bringing back a theme which was forgotten in my last post. Hope. I forgot that despite having a learning disability, I graduated high school with honors and college with a 3.2 GPA. I forgot that despite attempting suicide 3 times coupled with an anxiety disorder, I recognized the problem and sought out help. And I forgot that despite being diagnosed with a rare life-threatening lymphoma and was all but read my last rites during treatment, I survived.
This past Thursday, I went for my post-op follow-up. They removed the stitches and showed me 25-30 images from the interior of both my knees. Pictures were pretty graphic and I saw the cartilage actually hanging from my femurs. Besides removing both pieces of peeled cartilage from the knees, he also removed bone fragments and debris. It was a mess. Then we discussed the future because I can feel the bone rubbing on bone, can’t do quad lifts, or stairs without discomfort and pain.
What now?
I read up on core decompression surgery, but my necrosis is too advanced for such a procedure. Also, the reason he couldn’t perform the bone grafting. So, I start physical therapy in 10 days. We will try and strength my legs to delay the eventual double knee replacement. Until therapy starts, I have found new ways to maneuver stairs, driving, sitting down, and standing up. Not ideal, but we adapt or die.
My goal is to maximize my time in physical therapy. It can only benefit me. I still aspire to run or walk a 5K. I aspire to golf again and to walk the course not drive. I miss weight lifting and the rush that follows.
I can’t promise not to complain. I will promise to not give up. I will put in the work. When needed, I will go back under the knife. Until then, I will continue to fight to survive.
Cheers.
Sunday, August 26, 2012
Tuesday, August 21, 2012
Overdose!
Today, it isn’t the meds talking. It is me talking about the meds.
Prior to reading this post, it bears mentioning. Since the age of 14, I paid into the system before becoming disabled due to illness. I don't sponge. I pay out of pocket for Medicare Part A, B, and supplemental Part D, plus co-pays, clinics visits, hospital stays and have no dental coverage.
Now proceed.
You may remember my recent struggle obtaining a prescription that would cost me $562 out of pocket. I eventually got the medicine for $3 due to coverage by the MassHealth Safety Net. Now, the plot thickens.
Two days prior to double knee surgery, I attempted to fill a different script. I run into the same problem, but find out that MassHealth stopped my Safety Net coverage. Supposedly, I received an eligibility renewal form, which has yet to turn up. When I contacted MassHealth to refute this, and question what happens now, this was the response.
Sorry for your inconvenience. We’ll send a new form. You’ll need to complete it and send back for review. And what’s the turnaround time? 59 days from the day we receive your completed form.
Ok, let’s see. This were 5th grade math comes in handy. 3 days to send out form, 1 weekend to complete form, 3 days for them to receive it. Up to 59 days to determine my eligibility status…Um, so I may know by Halloween. Thank you for your assistance.
It gets worse. Post-surgery, my doctor needed me to take blood thinner injections for 10 days. He mentioned my insurance may not cover them. I was prepared and they did cost $231 out of pocket. Figuring this was a one-time drug and was essential to my recovery, I purchased it.
Back to present day. My mom kindly went to CVS to pick up a script I’ve been taking since last November and regularly costs me $40. Not today. $251! When she returned home, I was outraged and called my Medicare Part D supplemental prescription drug plan (WellCare) for answers. He says, “You are in the ‘Donut Hole’”. So, now I’m trapped in a F’cking munchkin.
No. It means, now I will be charged up to 60% on generic prescriptions and 50% on name brands out of pocket. I reached my coverage limit for the year. Apparently being on disability due to cancer with complications causing avascular necrosis, leaving me physically handicapped doesn’t justify a need for better healthcare.
Supposedly, social security offers aid that I once had but was dropped as of January without my knowledge. Tomorrow, I will spend all morning on the phone with social security in a venture for prescription drug aid. If they can’t help, I’m screwed. I don’t clear enough each month to afford the number of medications I take.
I try to end all of my posts with hope. Tonight, I go to bed scared. I won’t survive without the medication. Where is the hope in that?
I’m out.
Prior to reading this post, it bears mentioning. Since the age of 14, I paid into the system before becoming disabled due to illness. I don't sponge. I pay out of pocket for Medicare Part A, B, and supplemental Part D, plus co-pays, clinics visits, hospital stays and have no dental coverage.
Now proceed.
You may remember my recent struggle obtaining a prescription that would cost me $562 out of pocket. I eventually got the medicine for $3 due to coverage by the MassHealth Safety Net. Now, the plot thickens.
Two days prior to double knee surgery, I attempted to fill a different script. I run into the same problem, but find out that MassHealth stopped my Safety Net coverage. Supposedly, I received an eligibility renewal form, which has yet to turn up. When I contacted MassHealth to refute this, and question what happens now, this was the response.
Sorry for your inconvenience. We’ll send a new form. You’ll need to complete it and send back for review. And what’s the turnaround time? 59 days from the day we receive your completed form.
Ok, let’s see. This were 5th grade math comes in handy. 3 days to send out form, 1 weekend to complete form, 3 days for them to receive it. Up to 59 days to determine my eligibility status…Um, so I may know by Halloween. Thank you for your assistance.
It gets worse. Post-surgery, my doctor needed me to take blood thinner injections for 10 days. He mentioned my insurance may not cover them. I was prepared and they did cost $231 out of pocket. Figuring this was a one-time drug and was essential to my recovery, I purchased it.
Back to present day. My mom kindly went to CVS to pick up a script I’ve been taking since last November and regularly costs me $40. Not today. $251! When she returned home, I was outraged and called my Medicare Part D supplemental prescription drug plan (WellCare) for answers. He says, “You are in the ‘Donut Hole’”. So, now I’m trapped in a F’cking munchkin.
No. It means, now I will be charged up to 60% on generic prescriptions and 50% on name brands out of pocket. I reached my coverage limit for the year. Apparently being on disability due to cancer with complications causing avascular necrosis, leaving me physically handicapped doesn’t justify a need for better healthcare.
Supposedly, social security offers aid that I once had but was dropped as of January without my knowledge. Tomorrow, I will spend all morning on the phone with social security in a venture for prescription drug aid. If they can’t help, I’m screwed. I don’t clear enough each month to afford the number of medications I take.
I try to end all of my posts with hope. Tonight, I go to bed scared. I won’t survive without the medication. Where is the hope in that?
I’m out.
Wednesday, August 15, 2012
One week post op
In my sordid yet realistic view on life, I believe pain must be experienced to truly experience life. Again, this could just be the pain meds talking but after what my mind and body have been thru; it works for me. Also, I really like the word sordid.
Here’s a brief post-surgery update. It has been a week. I am still experience stiffness, some soreness, and discomfort. The range of motion is getting better. I attempted to drive yesterday and was unable to maneuver my legs properly with the pedals. On a side note, I gained 5lbs in the hospital overnight and have lost 8lbs since coming home. This is extremely pleasing. I follow up with the surgeon next Thursday. He will remove the stitches and assess my progress.
Oddly enough, I have no further rants, topics or such to discuss at this time. So pass the bottle and twist the cap.
Cheers.
Here’s a brief post-surgery update. It has been a week. I am still experience stiffness, some soreness, and discomfort. The range of motion is getting better. I attempted to drive yesterday and was unable to maneuver my legs properly with the pedals. On a side note, I gained 5lbs in the hospital overnight and have lost 8lbs since coming home. This is extremely pleasing. I follow up with the surgeon next Thursday. He will remove the stitches and assess my progress.
Oddly enough, I have no further rants, topics or such to discuss at this time. So pass the bottle and twist the cap.
Cheers.
Monday, August 13, 2012
Drowning in Thoughts
Thinking is an unwelcome vocation, when it is half past midnight; your knees are sore; the meds aren’t working; and there is nothing on TV. So here I am for your reading pleasure.
You can be surrounded with all your heart’s desires and still feel alone. Oh, crap! Adam, don’t go on one of these self-pity rants. In case you missed it. Read the opening lines again.
I don’t live alone. Admittedly, I live with my parents. And God bless them, because I am not sure where I’d be without them. I have a son. He loves me. I know he loves me, because he tells me. He cuddles with me. He hugs and kisses me. I could get all the same affection from a dog without 18 more years of child support payments, but really… where’s the fun in that? Friends…they come and go. Throughout your life, they always do. And I wouldn’t be here without my brother. He is my life blood.
Maybe, I’m getting off track or maybe the meds are finally kicking in. The point is. I feel alone. I could be standing in a sea of a million people and feel alone. I always have.
I participated in a program in college called “Lost but not Forgotten.” We’d paint our faces pale and put dark circles under our eyes. We’d wear T-shirts explaining how we were one of thousands of college students, who would be lost this year due to a drunk-driving accident. We’d ask permission of our professors not to speak for the day and then remain in silence from dusk ‘til dawn. It was the one day everyone wanted to talk with me. That never made sense.
I was in a rock band in high school called Rugged Sara. (Cheap Pop!) I had my regular group of friends consisting of nerds, band dorks, and freaks. We played one show at the high school and some of the “cool” kids then noticed me. Of course, everything is short lived. We broke up the next year and I fell into obscurity again. I never understood that either.
I was the last to be picked for kick ball. Good reason, I sucked. I was last to get a science partner. Bad reason, I was fat and a dork. I’ll never be a model, super or plus-size. I like to eat too much. I’ll never be NBA Hall of Famer. I’m white, short, clumsy, and slow. But I like to think I’m a good person.
We all have faults. Damn, I could start writing tonight until Tuesday and probably not finish a list of mine. I don’t have a clue what my point is. Maybe, there doesn’t have to be. Some things just are. I guess I am too.
Cheers.
You can be surrounded with all your heart’s desires and still feel alone. Oh, crap! Adam, don’t go on one of these self-pity rants. In case you missed it. Read the opening lines again.
I don’t live alone. Admittedly, I live with my parents. And God bless them, because I am not sure where I’d be without them. I have a son. He loves me. I know he loves me, because he tells me. He cuddles with me. He hugs and kisses me. I could get all the same affection from a dog without 18 more years of child support payments, but really… where’s the fun in that? Friends…they come and go. Throughout your life, they always do. And I wouldn’t be here without my brother. He is my life blood.
Maybe, I’m getting off track or maybe the meds are finally kicking in. The point is. I feel alone. I could be standing in a sea of a million people and feel alone. I always have.
I participated in a program in college called “Lost but not Forgotten.” We’d paint our faces pale and put dark circles under our eyes. We’d wear T-shirts explaining how we were one of thousands of college students, who would be lost this year due to a drunk-driving accident. We’d ask permission of our professors not to speak for the day and then remain in silence from dusk ‘til dawn. It was the one day everyone wanted to talk with me. That never made sense.
I was in a rock band in high school called Rugged Sara. (Cheap Pop!) I had my regular group of friends consisting of nerds, band dorks, and freaks. We played one show at the high school and some of the “cool” kids then noticed me. Of course, everything is short lived. We broke up the next year and I fell into obscurity again. I never understood that either.
I was the last to be picked for kick ball. Good reason, I sucked. I was last to get a science partner. Bad reason, I was fat and a dork. I’ll never be a model, super or plus-size. I like to eat too much. I’ll never be NBA Hall of Famer. I’m white, short, clumsy, and slow. But I like to think I’m a good person.
We all have faults. Damn, I could start writing tonight until Tuesday and probably not finish a list of mine. I don’t have a clue what my point is. Maybe, there doesn’t have to be. Some things just are. I guess I am too.
Cheers.
Thursday, August 9, 2012
Surgery results
Like almost every installment of my blog, this has good and bad news. In this installment, I will attempt to explain what did and didn’t happen during Wednesday’s scheduled surgery to repair a fracture in my left leg.
Due to avascular necrosis, there was a fracture in my shin bone. My surgeon’s expectations were to scope the leg; then remove a bone graft from my hip; drill a few holes; pack the holes; and finally insert two screws across the top of the bone to hold everything in place. I am sure you can imagine my surprise, when I came to in the recovery room to find this couldn’t be done. Needless to say I walked in with a broken leg and left with a broken leg.
This is what did happen. He performed scopes on my both knees. In each knee, he found the same problem. The cartilage between my thigh bone (the femur) and the knee joint had peeled off the femur. It was hinging on the joint, which resulted in pain, instability and discomfort. The cartilage was removed from each knee and I will eventually need both knees replaced.
Here is the good news. My right knee feels much better. Better today than when I entered the hospital Wednesday morning. Give me a few weeks of physical therapy and it should hold up for a while. The surgeon believes the fracture looked worse on the MRI than when he took a look inside. So even though there is less pain with the peeled cartilage, the overall stability of that leg is still questionable.
Luckily, I have a high tolerance for pain. I was told most patients wouldn’t have been walking around like me, let alone walking around without the aid of pain medication. This puts me in a better position to hold off further surgery for a longer period of time.
Am I disappointed? Yes. Is my son going to be disappointed, that daddy still can run? Yes. But I have some relief and it is better than the alternative. Monday, I was trapped on a flight of stairs with tears in my eyes. Today, I walked a corridor and climbed up and down stairs with minimal pain.
I’ll stay tough. I’ll stay positive. Give me a week or two and I’ll be out and about. Thank you for all the well wishes. I also want to thank brothers Prousalis and Davidson for visiting and mom and dad for taking care of me.
Cheers.
Due to avascular necrosis, there was a fracture in my shin bone. My surgeon’s expectations were to scope the leg; then remove a bone graft from my hip; drill a few holes; pack the holes; and finally insert two screws across the top of the bone to hold everything in place. I am sure you can imagine my surprise, when I came to in the recovery room to find this couldn’t be done. Needless to say I walked in with a broken leg and left with a broken leg.
This is what did happen. He performed scopes on my both knees. In each knee, he found the same problem. The cartilage between my thigh bone (the femur) and the knee joint had peeled off the femur. It was hinging on the joint, which resulted in pain, instability and discomfort. The cartilage was removed from each knee and I will eventually need both knees replaced.
Here is the good news. My right knee feels much better. Better today than when I entered the hospital Wednesday morning. Give me a few weeks of physical therapy and it should hold up for a while. The surgeon believes the fracture looked worse on the MRI than when he took a look inside. So even though there is less pain with the peeled cartilage, the overall stability of that leg is still questionable.
Luckily, I have a high tolerance for pain. I was told most patients wouldn’t have been walking around like me, let alone walking around without the aid of pain medication. This puts me in a better position to hold off further surgery for a longer period of time.
Am I disappointed? Yes. Is my son going to be disappointed, that daddy still can run? Yes. But I have some relief and it is better than the alternative. Monday, I was trapped on a flight of stairs with tears in my eyes. Today, I walked a corridor and climbed up and down stairs with minimal pain.
I’ll stay tough. I’ll stay positive. Give me a week or two and I’ll be out and about. Thank you for all the well wishes. I also want to thank brothers Prousalis and Davidson for visiting and mom and dad for taking care of me.
Cheers.
Tuesday, August 7, 2012
Business just picked up
Having intelligent, well-respected, personable, and prompt doctors are a blessing and a curse. Curse, you say? Yes, curse. Only when referring to their ability to wake you from a sound sleep at 8am with bad news.
So, let’s get down to business because I am awake now.
Surgeon: So what’s going on with the knee?
Me: My knee popped when I was trying to stand up yesterday. I have trouble weight bearing and the pain is tremendous.
Surgeon: What do you want to do?
Me: We probably need to scope it, but you said that might not be a good idea with everything else you’re already doing. And how will I manage to get around, especially up my front stairs with 2 surgically repaired legs.
Surgeon: Some low mumbling and muttering to himself… random terms included; partially torn ACL, cartilage tear, ruptured meniscus….umm. We can do the scope. It won’t be too bad. Clean up the debris behind your knee and the torn cartilage, and assess the total damage to the ACL.
Me: What kind of shape will that leave me in?
Surgeon: It really won’t be much worse than what was already planned. Maybe an extra day in the hospital, but you’ll be fine.
And there we have it. What started as an aspiration and cortisone injection has turned into orthoscopic knee surgery. I knew if I kept buying lottery tickets, eventually I’d get a winner. Looks like my numbers finally came up.
Cheers.
So, let’s get down to business because I am awake now.
Surgeon: So what’s going on with the knee?
Me: My knee popped when I was trying to stand up yesterday. I have trouble weight bearing and the pain is tremendous.
Surgeon: What do you want to do?
Me: We probably need to scope it, but you said that might not be a good idea with everything else you’re already doing. And how will I manage to get around, especially up my front stairs with 2 surgically repaired legs.
Surgeon: Some low mumbling and muttering to himself… random terms included; partially torn ACL, cartilage tear, ruptured meniscus….umm. We can do the scope. It won’t be too bad. Clean up the debris behind your knee and the torn cartilage, and assess the total damage to the ACL.
Me: What kind of shape will that leave me in?
Surgeon: It really won’t be much worse than what was already planned. Maybe an extra day in the hospital, but you’ll be fine.
And there we have it. What started as an aspiration and cortisone injection has turned into orthoscopic knee surgery. I knew if I kept buying lottery tickets, eventually I’d get a winner. Looks like my numbers finally came up.
Cheers.
Monday, August 6, 2012
It just went from sucks to blows
Snap. Crackle. POP!
Allow me to get the good news out of the way. All of my blood counts today were as good if not better than we’ve seen in months. My counseling session was productive. My oncologist feels everything is moving in the right direction. I can remove one prescription from my daily meds and it looks as though the bacterial infection is all healed.
However, like any good Shakespearian tragedy, the main character needs a flaw. My legs presently are the flaw. As you’ve read in prior posts, an aspiration, injection, bone graft and fracture reconstruction are planned for this Wednesday. The plot thickened this afternoon.
Imagine yourself sitting in the waiting room for your name to be called. It feels like winning the lottery, when it happens. Woohoo! I get to move from this waiting room to waiting in “the” room.
In an effort to stand from the prone position, my right knee pops. I hear it. I feel it. I’m now concerned about it.
This continued to happen on 3 more occasions during my day at clinic. The drive home was difficult because moving my leg from pedal to pedal became a painful chore. While exiting the car at home, the knee popped again and here come the stairs. Stair 1 – pop. Stair 2 – pop. Stair 3 – I collapsed on the staircase from exhaustion and pain with tears in my eyes. It took about 10 minutes but I eventually arrived on the landing after conquering Mount Saint Richmond (6 stairs).
Needless to say, I am now using a walker instead of crutches. I now have a call into my orthopedic surgeon. I am now wearing the brace for my fractured left on my right knee. And finally, I am favoring the fractured left leg over the right one.
Despite everything, I am still confident in my surgeon and probable success of surgery. It might just be a longer recovery.
I pray for one pain-free day. It may not come before I’m buried but at least it gives me something to look forward to. Grisly but true.
Cheers.
Allow me to get the good news out of the way. All of my blood counts today were as good if not better than we’ve seen in months. My counseling session was productive. My oncologist feels everything is moving in the right direction. I can remove one prescription from my daily meds and it looks as though the bacterial infection is all healed.
However, like any good Shakespearian tragedy, the main character needs a flaw. My legs presently are the flaw. As you’ve read in prior posts, an aspiration, injection, bone graft and fracture reconstruction are planned for this Wednesday. The plot thickened this afternoon.
Imagine yourself sitting in the waiting room for your name to be called. It feels like winning the lottery, when it happens. Woohoo! I get to move from this waiting room to waiting in “the” room.
In an effort to stand from the prone position, my right knee pops. I hear it. I feel it. I’m now concerned about it.
This continued to happen on 3 more occasions during my day at clinic. The drive home was difficult because moving my leg from pedal to pedal became a painful chore. While exiting the car at home, the knee popped again and here come the stairs. Stair 1 – pop. Stair 2 – pop. Stair 3 – I collapsed on the staircase from exhaustion and pain with tears in my eyes. It took about 10 minutes but I eventually arrived on the landing after conquering Mount Saint Richmond (6 stairs).
Needless to say, I am now using a walker instead of crutches. I now have a call into my orthopedic surgeon. I am now wearing the brace for my fractured left on my right knee. And finally, I am favoring the fractured left leg over the right one.
Despite everything, I am still confident in my surgeon and probable success of surgery. It might just be a longer recovery.
I pray for one pain-free day. It may not come before I’m buried but at least it gives me something to look forward to. Grisly but true.
Cheers.
Thursday, August 2, 2012
Avascular necrosis - A pre-surgical update
Avascular necrosis is a disease where cellular death of bone components occurs due to the lack or interruption of blood supply. Without proper blood supply, the bone tissue dies and bone collapse and fracture. In cases of avascular necrosis involving bones of a joint, it usually leads to destruction to the joint surface.
There are at least 15 didn’t factors that can cause avascular necrosis. Three of which, I have been exposed to. They include chemotherapy, radiation, and prolonged steroid use.
Today was my last pre-surgical consult. I scheduled the appointment, so there would be no surprises upon walking in the operating room. The plan for the right knee is still same. Drain (or aspirate) fluid from the joint and inject a cortisone shot. That’s the easy part. The left leg gets tricky.
I know my bout with cancer was rare and we were sailing unchartered waters. What I didn’t know was we are now doing the same with the left leg. He’s never performed this surgery on a patient with avascular necrosis. Apparently, there is a difference when repairing a bone that was broken by falling, sports, or being beaten in an alley with a pipe, then one with bone necrosis.
He gave an 85% chance it “could” be successful, or in the least buy me a little time before a full prosthetic knee replacement. This is a complicated surgery. There is a lot of stuff going on. There is NO physical therapy until I’m off crutches. It wouldn’t really matter anyway. We aren’t trying to strengthen surgically repaired muscle; we are trying to build bone. Is anyone catching my drift?
Theoretically, the procedure makes sense. Scope the knee to assess the complete damage. Make one 1” incision on both sides of the knee. Drill two holes into my fractured fibula. Take a sizeable bone graft from the right hip. Pack those two holes with as much bone graft as possible. Insert two large screws along the top of the bone, just below the knee joint to structurally stabilize the bone from collapsing. It is sound theory, but very risky.
Ok, that is all the semi-bad and medical information. Here’s the good news. I trust my surgeon. He is the only of three orthopedists, who gave me an alternative to a total knee replacement. I am young and don’t take much if any pain medication currently. This increases my chances of success. I’ll be partial weight bearing for 6 weeks on crutches or with a walker. That is my decision.
Sometimes you have to take a leap of faith. I did when I fought Mantle Cell and will when my leg is reconstructed. I have the strength and the will to do it. Either way, you haven’t heard the last of me.
Cheers.
There are at least 15 didn’t factors that can cause avascular necrosis. Three of which, I have been exposed to. They include chemotherapy, radiation, and prolonged steroid use.
Today was my last pre-surgical consult. I scheduled the appointment, so there would be no surprises upon walking in the operating room. The plan for the right knee is still same. Drain (or aspirate) fluid from the joint and inject a cortisone shot. That’s the easy part. The left leg gets tricky.
I know my bout with cancer was rare and we were sailing unchartered waters. What I didn’t know was we are now doing the same with the left leg. He’s never performed this surgery on a patient with avascular necrosis. Apparently, there is a difference when repairing a bone that was broken by falling, sports, or being beaten in an alley with a pipe, then one with bone necrosis.
He gave an 85% chance it “could” be successful, or in the least buy me a little time before a full prosthetic knee replacement. This is a complicated surgery. There is a lot of stuff going on. There is NO physical therapy until I’m off crutches. It wouldn’t really matter anyway. We aren’t trying to strengthen surgically repaired muscle; we are trying to build bone. Is anyone catching my drift?
Theoretically, the procedure makes sense. Scope the knee to assess the complete damage. Make one 1” incision on both sides of the knee. Drill two holes into my fractured fibula. Take a sizeable bone graft from the right hip. Pack those two holes with as much bone graft as possible. Insert two large screws along the top of the bone, just below the knee joint to structurally stabilize the bone from collapsing. It is sound theory, but very risky.
Ok, that is all the semi-bad and medical information. Here’s the good news. I trust my surgeon. He is the only of three orthopedists, who gave me an alternative to a total knee replacement. I am young and don’t take much if any pain medication currently. This increases my chances of success. I’ll be partial weight bearing for 6 weeks on crutches or with a walker. That is my decision.
Sometimes you have to take a leap of faith. I did when I fought Mantle Cell and will when my leg is reconstructed. I have the strength and the will to do it. Either way, you haven’t heard the last of me.
Cheers.
Subscribe to:
Posts (Atom)