I thought I would leave a few lines on how goes my health, with the emphasis on health, not illness. Ironically and, of course, serendipitously, as you continue to feel both better and normal, you insidiously begin to forget those previous really bad days; to the degree that an occasional mildly bad day seems more annoying than it should. This is what healthy people feel like and I am glad to be here.
The new normal has now lasted long enough that it is now just plain ordinary normal. Hence, I don't really think about it. The bottom line is that I generally feel good.
Where am I now? I am between a health score of 82 and 86 depending on the day of the week (or month)and depending on the timing or certain drugs. But, as you may recall, the beauty of the eighties is the presence of motivation. I remain excited to make a checklist and fill in the boxes when the task is done.
Full disclosure prompts me to share what this normal actually is, for those that might be following in a parallel path.
What I experience now falls, at present, into two categories: Symptoms of amyloidosis and side effects of drugs. Since I have not had a serious infection or heart rejection in months, categories 3 and 4 are currently quiescent.
Amyloidosis now involves my entire GI tract and remains stable as far as I can tell. My tongue is too large for my mouth with bothers me mostly at night as it pushes against my teeth. I can neither whistle anymore nor use my tongue to clean food from between my gums and cheeks. It is very difficult to swallow solids, sticky foods or large pills. My appetite remains good and I am now overweight at 198 lbs (notice that I didn't round up to 200, well I am more round anyway). My bowels are less predictable necessitating the awareness of the proximity to the nearest water closet; nuff said. I get out of breath quickly with rapid and immediate heavy lifting, especially if bending over is involved.
Autonomic and peripheral neuropathy have caused that my feet are simultaneously numb and hypersensitive. But it is like wearing a tie, initially the tightness bothers you, but soon you get used to it. I don't really notice it during the day. I also have lost peripheral proprioception and central (inner ear) balance. I compensate purely by visual input. If I close my eyes while standing unsupported, I start to tip. This is a combined side effect of my disease and drugs, specifically, Mycophenalate (Cellcept), My fingers and lips are numb and my teeth hypersensitive to cold.
Medication side-effects include (but are not limited too) 1. A wicked bad intention tremor, (anti-rejection drugs Prograf and Myfortic/Cellcept) Eating soup or balancing peas on a fork is comical. 2. Complete loss of balance, (for two minutes), on standing after a long car ride or sitting at a desk (Cellcept/Myfortic) 3. Hypertension (Prograf) 4. Hypomagnesemia/low magnesium (Prograf) 5. Anemia/low red cell count (Septra and Valcyte) 6. Neutropenia/low white cell count (Valcyte and Revlimid) 7. Low Platelets (Revlimid and Bone marrow transplant) 8. Easy bruising (Decadron, prednisone, low platelets and aspirin) 9. Thin skin and poor healing (steroids) 10. Insomnia (generally only on Wednesdays; Decadron) 11. Hiccups (Thursdays, Decadron) 12. Fatigue (everyday, all of the above) 13. Loss of sense of humor, Saturdays from 10:00 AM to 12:30 AM (Decadron) 14. Hearing loss (I not sure why) 15. Hoarseness, worse on Wednesdays (Decadron) 16. Osteoporosis (Decadron/Prednisone) 17. Wicked bad muscle cramps at 4:00 in the morning (may be mineral or metabolic imbalance). 18. Red spots/spontaneous bleeds in upper eyelids, (Amyloidosis, hypertension and aspirin). 19. Tachycardia/Rapid heart rate and atrial bigeminy/irregular beat (due to a neurologically untethered heart. My brain and heart were never reconnected. I remain a mute scarecrow to my tinman). 20. Overuse of bad puns (that's just me, I can only blame myself).
Know that I am not complaining nor am I looking for sympathy. Most of the above symptoms either don't really bother me or I have adapted to them. The most annoying symptom is probably the tremor. Otherwise, I really don't think about them much. I get up after a typically dream filled and restful night's sleep, eat my Lucky Charms or Life cereal (apropos) and go to work. Work is still amazing and I love it. My co-workers are all fantastic people that equally want to serve others. Work is my favorite medicine with the most wonderful side-effect; memory loss of myself.
To complain on my condition would be most ungrateful. I am now planning my life up to six months ahead; I put my money where my hope is. I would be happy to stay just the way I am for years to come.
Kevin
P.S. I finished posting the above and found that my light chain levels had just come back after completeing my most recent course of Revlimid. The kappa light chain level has dropped to 113 mg/l. This is the lowest level since my bone marrow transplant. That is just too cool. I thank God, and all of you.
The new normal has now lasted long enough that it is now just plain ordinary normal. Hence, I don't really think about it. The bottom line is that I generally feel good.
Where am I now? I am between a health score of 82 and 86 depending on the day of the week (or month)and depending on the timing or certain drugs. But, as you may recall, the beauty of the eighties is the presence of motivation. I remain excited to make a checklist and fill in the boxes when the task is done.
Full disclosure prompts me to share what this normal actually is, for those that might be following in a parallel path.
What I experience now falls, at present, into two categories: Symptoms of amyloidosis and side effects of drugs. Since I have not had a serious infection or heart rejection in months, categories 3 and 4 are currently quiescent.
Amyloidosis now involves my entire GI tract and remains stable as far as I can tell. My tongue is too large for my mouth with bothers me mostly at night as it pushes against my teeth. I can neither whistle anymore nor use my tongue to clean food from between my gums and cheeks. It is very difficult to swallow solids, sticky foods or large pills. My appetite remains good and I am now overweight at 198 lbs (notice that I didn't round up to 200, well I am more round anyway). My bowels are less predictable necessitating the awareness of the proximity to the nearest water closet; nuff said. I get out of breath quickly with rapid and immediate heavy lifting, especially if bending over is involved.
Autonomic and peripheral neuropathy have caused that my feet are simultaneously numb and hypersensitive. But it is like wearing a tie, initially the tightness bothers you, but soon you get used to it. I don't really notice it during the day. I also have lost peripheral proprioception and central (inner ear) balance. I compensate purely by visual input. If I close my eyes while standing unsupported, I start to tip. This is a combined side effect of my disease and drugs, specifically, Mycophenalate (Cellcept), My fingers and lips are numb and my teeth hypersensitive to cold.
Medication side-effects include (but are not limited too) 1. A wicked bad intention tremor, (anti-rejection drugs Prograf and Myfortic/Cellcept) Eating soup or balancing peas on a fork is comical. 2. Complete loss of balance, (for two minutes), on standing after a long car ride or sitting at a desk (Cellcept/Myfortic) 3. Hypertension (Prograf) 4. Hypomagnesemia/low magnesium (Prograf) 5. Anemia/low red cell count (Septra and Valcyte) 6. Neutropenia/low white cell count (Valcyte and Revlimid) 7. Low Platelets (Revlimid and Bone marrow transplant) 8. Easy bruising (Decadron, prednisone, low platelets and aspirin) 9. Thin skin and poor healing (steroids) 10. Insomnia (generally only on Wednesdays; Decadron) 11. Hiccups (Thursdays, Decadron) 12. Fatigue (everyday, all of the above) 13. Loss of sense of humor, Saturdays from 10:00 AM to 12:30 AM (Decadron) 14. Hearing loss (I not sure why) 15. Hoarseness, worse on Wednesdays (Decadron) 16. Osteoporosis (Decadron/Prednisone) 17. Wicked bad muscle cramps at 4:00 in the morning (may be mineral or metabolic imbalance). 18. Red spots/spontaneous bleeds in upper eyelids, (Amyloidosis, hypertension and aspirin). 19. Tachycardia/Rapid heart rate and atrial bigeminy/irregular beat (due to a neurologically untethered heart. My brain and heart were never reconnected. I remain a mute scarecrow to my tinman). 20. Overuse of bad puns (that's just me, I can only blame myself).
Know that I am not complaining nor am I looking for sympathy. Most of the above symptoms either don't really bother me or I have adapted to them. The most annoying symptom is probably the tremor. Otherwise, I really don't think about them much. I get up after a typically dream filled and restful night's sleep, eat my Lucky Charms or Life cereal (apropos) and go to work. Work is still amazing and I love it. My co-workers are all fantastic people that equally want to serve others. Work is my favorite medicine with the most wonderful side-effect; memory loss of myself.
To complain on my condition would be most ungrateful. I am now planning my life up to six months ahead; I put my money where my hope is. I would be happy to stay just the way I am for years to come.
Kevin
P.S. I finished posting the above and found that my light chain levels had just come back after completeing my most recent course of Revlimid. The kappa light chain level has dropped to 113 mg/l. This is the lowest level since my bone marrow transplant. That is just too cool. I thank God, and all of you.
10 comments:
Kevin,
Ahhh, the side effects of our meds. Quite accurate, especially the tremors. When mine would get too bad, I'd sit on my hands.
A question for you, and perhaps your family .... as a heart tx recipient, I've been asked many times if I've "changed" or picked up possible "traits" from my donor?
I've read a lot about "cellular memory" and some of the cases are fascinating, but I have not seen, nor has my family seen any major instances in little old me.
Any thoughts from you as a patient and/or a doctor?
Wow, I am amazed that with all that you deal with, you are having "normal" "good" days. I cannot imagine what the "bad" days are like. You are an inspiration to us all and I pray for your health everyday.
We love you!
Brooke
Kevin:
Glad to hear of your adaptation to a new normality, but sad too to hear of the litany of things you have to deal with.
As you know we share many characteristics (amyloidosis, physicianhood, love of work, the "joys" of amyloid neuropathy with the combination of sensory, motor, and autonomic characteristics. I too have reflected on the irony of being insensate in the feet while at the same time suffering from sometimes terrible neuropathic pain.
As you continue on the journey of having this strange illness, it is good that you have found the importance of the many joys that life gives. I'm convinced that no matter how severe an illness one suffers, it is the attitude you wake up with each morning that determines much.
My best regards and hopes that your journey continues for a very long time.
Rich Neubauer
You are amazing- keep up the good work.
Boy, am I glad you're here but so sorry to hear about #13 and your lost humor on Saturdays....but, we'll take you however we can get you! Keep up the good work!
hi kev, i have been lagging on reading!!
To the 1st poster I have picked up two traits that i never had before!!!!!! 1st is well i think my donor was a hooker and lets just say my hubby is happy!!!!! lol i can believe i just made that public!
2nd is she sleep all day and up all night!
I am up till 3-4 am. I just cant go to sleep
I used to be in bed by 10
My period dont work on my keyboard so excuse it hehe
My Friedreich's ataxia has gotten worse of course Kev but I never thought maybe the cellcept added to the tremor and balance prob that I already have!
I have gained so much weight!! grrrrr between meds and mobility!!
Other than that tho i am feeling great and blessed and happy to be alive!
We can deal with those side effects (i guess) hehehe
Glad u feeling good and miss ya!
Tell Barbie hi
hi kev, i have been lagging on reading!!
To the 1st poster I have picked up two traits that i never had before!!!!!! 1st is well i think my donor was a hooker and lets just say my hubby is happy!!!!! lol i can believe i just made that public!
2nd is she sleep all day and up all night!
I am up till 3-4 am. I just cant go to sleep
I used to be in bed by 10
My period dont work on my keyboard so excuse it hehe
My Friedreich's ataxia has gotten worse of course Kev but I never thought maybe the cellcept added to the tremor and balance prob that I already have!
I have gained so much weight!! grrrrr between meds and mobility!!
Other than that tho i am feeling great and blessed and happy to be alive!
We can deal with those side effects (i guess) hehehe
Glad u feeling good and miss ya!
Tell Barbie hi
Thanks for the logical, informative update, Kevin. Glad you are 'weller'.
Since Dr. Azar is planning to put Ed back on Revlimid, we read with interest your attributions to the different meds.
love,
Aunt Renie
So glad to hear you are feeling great despite the list of ailments. I don't know if you remember, but I've always had a tremor. Familial. The pits. But, I have absolutely nothing to complain about. We miss and love you. Happy New Year! Mary Jane
My niece, aged 10 has been diagnosed with restrictive cardiomyopathy. We are in the process of waiting for her biopsy. Reading your story, provides some comfort knowing there is a possibility for a full recovery if it is caused by amyliodosis. Pray for my dear little Kaitlyn.
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