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Post by Deleted on Sept 24, 2019 19:27:11 GMT -5
Went back to the doc today to get my lab results and talk about my groin muscle problem...
Apparently, my labs show I have something called polycythemia. It's a form of cancer where your body produces too many red blood cells. He said my blood work definitively diagnoses it, but ran more tests to be sure I don't have any complications.
The treatment is to remove blood on a regular basis. Weird but tolerable.
From what I read online, I have a small chance of converting to leukemia and a decent chance of dying in <20 years but otherwise there isn't much to do about it.
So, I started the day thinking about selling my house and meeting with a realtor, now I have to figure out how to move and not completely lose health insurance between the time I sell and the time I reside in a new state.
Seriously, did this have to show up right damn now? I swear sometimes the phrase "fuck my life" applies no matter what I do... lol
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Tennesseer
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Post by Tennesseer on Sept 24, 2019 19:29:59 GMT -5
Sorry to hear this, Rockhounder.
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sesfw
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Post by sesfw on Sept 24, 2019 20:28:05 GMT -5
Sorry rockhounder ..... Hopefully the further tests taken will give good answers. How is your son doing?
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Post by Deleted on Sept 24, 2019 21:35:43 GMT -5
Sorry rockhounder ..... Hopefully the further tests taken will give good answers. How is your son doing? Thank you. I drug myself to the lab today so I can see the results in 3 days when they show up online. I read all about the condition and will now make an effort to avoid doing so... It's just a bad rabbit hole to go down. DS's doing well, thank you for asking. He's been working full-time since I came back home and hasn't missed any time at work. He's had a couple "small" seizures, but said they were very mild. He is cleared to drive, so he's saving up money to get his car fixed and out of my driveway. Driving will greatly improve his quality of life and allow him to go back to school. My other son and his GF are moving out in a couple weeks. The growers are all leaving the area for the winter. It's going to be a nice quiet winter. Well, we can hope. lol
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taz157
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Post by taz157 on Sept 24, 2019 21:39:03 GMT -5
Sorry rockhounder ..... Hopefully the further tests taken will give good answers.
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busymom
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Post by busymom on Sept 24, 2019 21:42:03 GMT -5
Don't panic about the diagnosis. My uncle had this, and he lived to a ripe old age. He DID have to go in from time & time to get some of his blood removed, but that was pretty much all there was to it, in his case. So sorry you're dealing with this.
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Post by Deleted on Sept 25, 2019 6:59:49 GMT -5
Rockhounder, I'm sorry to hear this- DH was diagnosed with it when he was in his late 60s. He managed it with phlebotomies for years and then switched to Hydroxyurea when the phlebotomies stopped working. Do you have itching attacks? That's what led to his diagnosis- itching and night sweats. He had it for 10 years before it morphed into acute myeloid leukemia and he died 6 months later- but he was 78 and he'd smoked for 50 years although the diagnosis was after he quit. Those were 10 good years, though. We did a lot of traveling and had a good life.
Every case is different so please don't assume you'll have the same outcome as a 67-year old who smoked most of his life. They told him he was more likely to die WITH it than OF it but in DH's case it did go into leukemia.
One day at a time.
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Post by Deleted on Sept 25, 2019 7:05:34 GMT -5
Don't panic about the diagnosis. My uncle had this, and he lived to a ripe old age. He DID have to go in from time & time to get some of his blood removed, but that was pretty much all there was to it, in his case. So sorry you're dealing with this. Thank you. I read your message last night before bed and it made me feel a bit better about the situation. Do you know if he had itching? That's supposed to be the indicator of whether it will be mild or more severe. I wish I itched, but I don't.
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Deleted
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Post by Deleted on Sept 25, 2019 7:29:13 GMT -5
Rockhounder, I'm sorry to hear this- DH was diagnosed with it when he was in his late 60s. He managed it with phlebotomies for years and then switched to Hydroxyurea when the phlebotomies stopped working. Do you have itching attacks? That's what led to his diagnosis- itching and night sweats. He had it for 10 years before it morphed into acute myeloid leukemia and he died 6 months later- but he was 78 and he'd smoked for 50 years although the diagnosis was after he quit. Those were 10 good years, though. We did a lot of traveling and had a good life. Every case is different so please don't assume you'll have the same outcome as a 67-year old who smoked most of his life. They told him he was more likely to die WITH it than OF it but in DH's case it did go into leukemia. One day at a time. I read the results of a large study last night. Itching is supposed to be the indicator of a better outcome/longer survival. I don't have any itching. There is a lot of evidence that Hydroxyurea and the other drugs cause PV to convert to AML. But, it sounds like once you need the drugs there isn't much choice. Lots of the survival statistics are based on people >60 so it's hard to get a decent answer on that. I'm 50. I've seen everywhere from 1.5 years without treatment to >20 years. The longest seems to be a combo of phlebotomy and aspirin without any of the harsher drugs. Smoking raises the risk of blood clots if you are actively smoking. I smoked cigarettes for a couple decades but can't smoke anymore because it bothers my lungs. Cannabis is actually listed as something helpful for preventing clots. Can I ask what his symptoms of AML were? I've been getting some lumps under my skin (abdominal and back of my neck), lots of abdominal bloating, have had night sweats and fevers, random shortness of breath, and just generally feeling overwhelmingly fatigued. A couple weeks ago my hands and feet started going numb and burning. I have been actually wondering if I had lymphoma of some type. I know from the CT scan I had when I had the intestinal infection that my liver and spleen are enlarged. It appears the cancer might be the reason though to date everyone has tried to blame that on my weight... of course... I asked the RNNP about the other symptoms and if they were likely caused by the cancer and he said probably not. After I started reading, it really made me wonder. I am hopeful because treatments are always improving, so there could always be some other options later down the line. And, while I would likely refuse any chemo or radiation type treatments, I can tolerate phlebotomy. If it were to convert, I won't treat it. The biggest issues I foresee in the near future is I am expecting to lose health coverage to move and will ultimately have to buy insurance on the exchange because I will have more than 2K in the bank and will no longer qualify for Medicaid. And, if I get a referral to a hematologist there probably isn't one anywhere near here who will see a pt with Medicaid so figuring out how to get to SF or some other far away location on a regular basis without a car will be a huge challenge. Thankfully, both places I am considering moving in OR have small hospitals. Now I will need to find out how far a hematologist is from each.
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swamp
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Post by swamp on Sept 25, 2019 8:09:17 GMT -5
Rockhounder, I'm so sorry. Life has thrown a pile of shit at you, and you handle it with dignity. My thoughts are with you.
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busymom
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Post by busymom on Sept 25, 2019 8:15:26 GMT -5
Don't panic about the diagnosis. My uncle had this, and he lived to a ripe old age. He DID have to go in from time & time to get some of his blood removed, but that was pretty much all there was to it, in his case. So sorry you're dealing with this. Thank you. I read your message last night before bed and it made me feel a bit better about the situation. Do you know if he had itching? That's supposed to be the indicator of whether it will be mild or more severe. I wish I itched, but I don't. I'm afraid I don't know if he had itching. A strange coincidence, like you, is that he lived most of his life in California. Is there something in the drinking water there, or did your doctor say anything about a possible cause?
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Post by Deleted on Sept 25, 2019 8:33:51 GMT -5
So sorry to hear this. I agree with swamp in that you seem to have a great attitude no matter what life throws at you.
I'd still sell that damn house though.
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Post by Deleted on Sept 25, 2019 8:34:49 GMT -5
Thank you. I read your message last night before bed and it made me feel a bit better about the situation. Do you know if he had itching? That's supposed to be the indicator of whether it will be mild or more severe. I wish I itched, but I don't. I'm afraid I don't know if he had itching. A strange coincidence, like you, is that he lived most of his life in California. Is there something in the drinking water there, or did your doctor say anything about a possible cause? Ironically, since my well is non-potable, I buy Crystal Geyser bottled water to drink. They bottle it at the Roxanne plant about 30 miles from my house. Oddly enough, it says online it's caused by a random genetic mutation on the JAX gene. It says it's not inherited or inheritable. Considering my son's dwarfism, we seem to be a mutation-heavy family... Lucky us? lol Since the cancer has to do with iron, my son asked if all the iron-heavy water from my well is detrimental. I have no idea. I soak in it when I bathe, but I never drink it. When our water was full-spectrum tested back in the day, it had all sorts of stuff in it associated with mineralized faults. I read recently areas mined for copper and other minerals are associated with bone cancer. So, who knows. The whole thing is still settling into my brain. I was told I had uterine cancer once and spent about a week thinking I was dying only to have emergency surgery and then all the tissues tested negative for cancer. So, I guess if I do have to have cancer this seems like one of the better ones to have and I've kinda done this rodeo before... unfortunately... The first thought I had is I absolutely need to sell my house and go travel and live somewhere I can be happy again. So, I will do everything I can to stay on that path.
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Deleted
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Post by Deleted on Sept 25, 2019 8:45:41 GMT -5
So sorry to hear this. I agree with swamp in that you seem to have a great attitude no matter what life throws at you.
I'd still sell that damn house though.
Thank you for my first laugh of the day. I often refer to it as the "damn house in the middle of the occupied territory"... lol My first thought was I must sell my house and move. So, that's still the plan. The first question I asked is if this is treated with radiation or chemo and if so how long before it kills me if I refuse. I really have zero ability to deal with a lot of invasive treatment. I'd rather not be around than do it. I realize other people may not feel that way, but I really value my quality of life and don't have any desire to be around if I don't have one. I hate just going to the doctors office for something simple. When I start having multiple appointments I start wanting to get as far away from it as possible. I don't like people touching me or in my space. I don't like being told what is going to happen to my body as if I have no choice in the matter. Perhaps a control problem, but I hate it enough to mostly avoid healthcare. I guess only time will tell.
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resolution
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Post by resolution on Sept 25, 2019 9:41:07 GMT -5
The biggest issues I foresee in the near future is I am expecting to lose health coverage to move and will ultimately have to buy insurance on the exchange because I will have more than 2K in the bank and will no longer qualify for Medicaid. If you try to buy insurance on the exchange, it would refer you back to Medicaid if you earn under 100% of the federal poverty level. You can't get a subsidy on the exchange if you earn under the limit. If you move to another state that has accepted the Medicaid expansion under the ACA, you shouldn't be disqualified based on your bank account. There shouldn't be an asset limit for non-disabled adults under the age of 65. Unless they got some kind of waiver, it would be based on income, so if you sold your house and had the money in savings while you looked for a new home, they would count any income that was generated (interest, dividends, etc.) but not the asset itself. You will probably want to go online for whatever state you plan to move to and make sure they took the Medicaid expansion. If they didn't expand medicaid, you will have to make sure you earn enough income to qualify for a subsidy on the exchange.
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Post by Deleted on Sept 25, 2019 11:43:47 GMT -5
The biggest issues I foresee in the near future is I am expecting to lose health coverage to move and will ultimately have to buy insurance on the exchange because I will have more than 2K in the bank and will no longer qualify for Medicaid. If you try to buy insurance on the exchange, it would refer you back to Medicaid if you earn under 100% of the federal poverty level. You can't get a subsidy on the exchange if you earn under the limit. If you move to another state that has accepted the Medicaid expansion under the ACA, you shouldn't be disqualified based on your bank account. There shouldn't be an asset limit for non-disabled adults under the age of 65. Unless they got some kind of waiver, it would be based on income, so if you sold your house and had the money in savings while you looked for a new home, they would count any income that was generated (interest, dividends, etc.) but not the asset itself. You will probably want to go online for whatever state you plan to move to and make sure they took the Medicaid expansion. If they didn't expand medicaid, you will have to make sure you earn enough income to qualify for a subsidy on the exchange. I am planning to move to Oregon. They have expanded Medicaid but I can't have more than $2K in a bank account to qualify with income below the $1400 a month limit. That means I have to buy my own insurance. If my income is Medicaid-level and that prevents me from getting a subsidy, then I'm just screwed? I'm not willing to burn through all the cash just for medical coverage. If I had no other option, I would more likely stash it in a savings deposit box or go without any medical treatment.
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weltschmerz
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Post by weltschmerz on Sept 25, 2019 12:22:19 GMT -5
So sorry to hear this. I agree with swamp in that you seem to have a great attitude no matter what life throws at you.
I'd still sell that damn house though.
Thank you for my first laugh of the day. I often refer to it as the "damn house in the middle of the occupied territory"... lol My first thought was I must sell my house and move. So, that's still the plan. The first question I asked is if this is treated with radiation or chemo and if so how long before it kills me if I refuse. I really have zero ability to deal with a lot of invasive treatment. I'd rather not be around than do it. I realize other people may not feel that way, but I really value my quality of life and don't have any desire to be around if I don't have one. I hate just going to the doctors office for something simple. When I start having multiple appointments I start wanting to get as far away from it as possible. I don't like people touching me or in my space. I don't like being told what is going to happen to my body as if I have no choice in the matter. Perhaps a control problem, but I hate it enough to mostly avoid healthcare. I guess only time will tell. I'm the same. I don't want a lot of treatment. I've seen what it does to people. If I'm diagnosed with a fatal disease, give me lots of morphine and let me go. I've lived a good life. That being said, it looks like your condition is manageable. Best of luck to you and your son.
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tallguy
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Post by tallguy on Sept 25, 2019 12:57:35 GMT -5
If you try to buy insurance on the exchange, it would refer you back to Medicaid if you earn under 100% of the federal poverty level. You can't get a subsidy on the exchange if you earn under the limit. If you move to another state that has accepted the Medicaid expansion under the ACA, you shouldn't be disqualified based on your bank account. There shouldn't be an asset limit for non-disabled adults under the age of 65. Unless they got some kind of waiver, it would be based on income, so if you sold your house and had the money in savings while you looked for a new home, they would count any income that was generated (interest, dividends, etc.) but not the asset itself. You will probably want to go online for whatever state you plan to move to and make sure they took the Medicaid expansion. If they didn't expand medicaid, you will have to make sure you earn enough income to qualify for a subsidy on the exchange. I am planning to move to Oregon. They have expanded Medicaid but I can't have more than $2K in a bank account to qualify with income below the $1400 a month limit. That means I have to buy my own insurance. If my income is Medicaid-level and that prevents me from getting a subsidy, then I'm just screwed? I'm not willing to burn through all the cash just for medical coverage. If I had no other option, I would more likely stash it in a savings deposit box or go without any medical treatment. You should recheck that information. There is still an asset test for traditional Medicaid, but the ACA eliminated that for expanded Medicaid. You may very well qualify. Do not assume that you don't.
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azucena
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Post by azucena on Sept 25, 2019 14:13:12 GMT -5
Rockhounder, I'm so sorry. Life has thrown a pile of shit at you, and you handle it with dignity. My thoughts are with you.
I'll echo Swamp's sentiments and go one step further... life keeps launching shit grenades your way, you've taken several direct hits, and yet still live to fight on with layers upon layers of shrapnel still embedded.
Does the new diagnosis have anything to do with the pain you've been having? If so, will the treatment help that at least?
Please keep posting here - so many of us are genuinely rooting for you! I've been impressed by the answers/help you've gotten so far on this thread.
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resolution
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Post by resolution on Sept 25, 2019 16:16:17 GMT -5
If you try to buy insurance on the exchange, it would refer you back to Medicaid if you earn under 100% of the federal poverty level. You can't get a subsidy on the exchange if you earn under the limit. If you move to another state that has accepted the Medicaid expansion under the ACA, you shouldn't be disqualified based on your bank account. There shouldn't be an asset limit for non-disabled adults under the age of 65. Unless they got some kind of waiver, it would be based on income, so if you sold your house and had the money in savings while you looked for a new home, they would count any income that was generated (interest, dividends, etc.) but not the asset itself. You will probably want to go online for whatever state you plan to move to and make sure they took the Medicaid expansion. If they didn't expand medicaid, you will have to make sure you earn enough income to qualify for a subsidy on the exchange. I am planning to move to Oregon. They have expanded Medicaid but I can't have more than $2K in a bank account to qualify with income below the $1400 a month limit. That means I have to buy my own insurance. If my income is Medicaid-level and that prevents me from getting a subsidy, then I'm just screwed? I'm not willing to burn through all the cash just for medical coverage. If I had no other option, I would more likely stash it in a savings deposit box or go without any medical treatment. You may be looking at old information, before Oregon accepted the Medicaid expansion. Or possibly at some information that applies to the aged, blind, and disabled program. I would recommend you call the office and talk to them about the asset test, and see if that puts your mind at ease. You should only be screwed if you move to a state that didn't adopt the medicaid expansion.
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happyhoix
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Post by happyhoix on Sept 25, 2019 18:06:47 GMT -5
So sorry to hear this. I agree with swamp in that you seem to have a great attitude no matter what life throws at you.
I'd still sell that damn house though.
Thank you for my first laugh of the day. I often refer to it as the "damn house in the middle of the occupied territory"... lol My first thought was I must sell my house and move. So, that's still the plan. The first question I asked is if this is treated with radiation or chemo and if so how long before it kills me if I refuse. I really have zero ability to deal with a lot of invasive treatment. I'd rather not be around than do it. I realize other people may not feel that way, but I really value my quality of life and don't have any desire to be around if I don't have one. I hate just going to the doctors office for something simple. When I start having multiple appointments I start wanting to get as far away from it as possible. I don't like people touching me or in my space. I don't like being told what is going to happen to my body as if I have no choice in the matter. Perhaps a control problem, but I hate it enough to mostly avoid healthcare. I guess only time will tell. When we were dealing with patching our house and yard back up post tornado we referred to our house as the shit shack. I really hated it sometimes. So I know what you mean.
Also know what you mean about hating to see doctors a lot, and not wanting any invasive treatments. I've seen several people struggle through years of debilitating cancer treatments and then died, anyway. And in my case, both parents died from dementia, so I would have to question why I would go through all the chemo to only die very slowly (and expensively) from dementia.
You do always seem to plow through these things with a good attitude - best of luck, and good luck selling your house!
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Post by Deleted on Sept 25, 2019 18:17:36 GMT -5
@rockhounder, you are in my prayers!
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sesfw
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Post by sesfw on Sept 25, 2019 19:56:30 GMT -5
If I had no other option, I would more likely stash it in a savings deposit box
This sounds like a swinging good idea. Or put it in a pillowcase and pack it in a suitcase. No paper trail
Good luck on what ever you decide.
Glad your son is doing well, and please keep us posted.
Hugs ...........
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Post by Deleted on Sept 25, 2019 19:58:19 GMT -5
Can I ask what his symptoms of AML were? I've been getting some lumps under my skin (abdominal and back of my neck), lots of abdominal bloating, have had night sweats and fevers, random shortness of breath, and just generally feeling overwhelmingly fatigued. A couple weeks ago my hands and feet started going numb and burning. I have been actually wondering if I had lymphoma of some type. I know from the CT scan I had when I had the intestinal infection that my liver and spleen are enlarged. It appears the cancer might be the reason though to date everyone has tried to blame that on my weight... of course... Yes, and enlarged spleen is definitely a symptom- but they want you to keep your spleen because it destroys dead blood cells. H just kept getting weaker and kept needing higher doses of Hydroxyurea to keep the itching down. His bloodwork got crazy, too, and that's what led them to do a bone marrow biopsy that showed he had AML. If I remember it was the white blood cell counts, the neutrophils and increases in some other immature/mutant cells that indicated something was wrong. Despite that, one of our best trips was one to Iceland in August 2015. He skipped one very active excursion I took but we thoroughly enjoyed the rest. He died in November 2016. I went back to Iceland in 2017 and left some of his ashes there. They told DH that cheno had a 3% chance of success. Before that they'd tried something that had to be injected into his stomach periodically that had no real side effects, but it didn't help. I thoroughly agreed with his decision not to pursue chemo.
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Post by Deleted on Sept 26, 2019 10:23:49 GMT -5
My new labs posted this morning. They are all now NORMAL! The only abnormal value is a white blood cell number, all my red blood cell tests are back to normal. This is the second damn time the doctor told me they were sure I had cancer of some form and then the further tests prove I don't. Thank the Athiest God. Now back to my life!
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Tennesseer
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Post by Tennesseer on Sept 26, 2019 10:31:21 GMT -5
Good to hear.
My mom had full blown Alzheimer's disease. But the doctors first told us mom had late stage syphilis. A retest for the syphilis proved negative. Just plain ol' Alzheimer's disease.
A WTF diagnosis for a couple of days.
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GRG a/k/a goldenrulegirl
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Post by GRG a/k/a goldenrulegirl on Sept 26, 2019 11:34:35 GMT -5
My new labs posted this morning. They are all now NORMAL! The only abnormal value is a white blood cell number, all my red blood cell tests are back to normal. This is the second damn time the doctor told me they were sure I had cancer of some form and then the further tests prove I don't. Thank the Athiest God. Now back to my life! Girl, now you REALLY MUST get the heck out of there and go somewhere with competent, accessible, health care.
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weltschmerz
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Post by weltschmerz on Sept 26, 2019 13:45:38 GMT -5
My new labs posted this morning. They are all now NORMAL! The only abnormal value is a white blood cell number, all my red blood cell tests are back to normal. This is the second damn time the doctor told me they were sure I had cancer of some form and then the further tests prove I don't. Thank the Athiest God. Now back to my life! That's great news! What kind of doctors do you have there, anyway?
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Deleted
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Post by Deleted on Sept 26, 2019 14:44:54 GMT -5
My new labs posted this morning. They are all now NORMAL! The only abnormal value is a white blood cell number, all my red blood cell tests are back to normal. This is the second damn time the doctor told me they were sure I had cancer of some form and then the further tests prove I don't. Thank the Athiest God. Now back to my life! That's great news! What kind of doctors do you have there, anyway? I have to see an RNNP because my doctor quit and they haven't been able to find a new one who wants to move here. Welcome to American healthcare. Last time they told me I had cancer, I had to have an emergency hysterectomy. After they did the pathology they told me they were mistaken... Lord...
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TheOtherMe
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Post by TheOtherMe on Sept 26, 2019 17:22:19 GMT -5
I'm happy you don't have cancer. BTDT
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