Hysterectomy

26

You can follow the detailed progress of visits, current health, etc on my blog with my hysterectomy tag but this is a detailed account of the entire experience starting from my ER visit, to diagnosis to treatment thus far. I’ll try to update this as needed to be an all-in-one page summary. (You can scroll to the bottom to see the most current update.)

May 29th I went to the ER. Found out my uterus was full of tumors and cysts. In fact, I had so many tumors of such a large size, that they couldn’t do surgery right away. (High risk is 250 grams and I had approximately 1,250 grams or about 2.75lbs) From June until surgery (which was October 5th) I was on medication inducing temporary menopause to shrink the tumors. I was on unpaid medical leave during this time by order of the HR department, but they then decided to stop holding the position for me, leaving me permanently laid off and over $10,000 in medical bills.

I worked a part-time job that did NOT give me insurance. I also did NOT get paid for any time off period. My last paycheck was June 3rd and I have no more coming until I can find a new job again. I’m asking anyone who can help for your support as a result. Even just sharing my links is helpful. I rely on my shop sales to replace my lost income from my day job for both medical bills and living expenses.

With your help and support, I was able to raise the $2,600 I needed up front for surgery. My hysterectomy was October 5th as scheduled and went perfectly! I’m VERY slowly healing now – it’s a hell of a process – but surgery was only half the battle. I have over $10,000 of dollars in medical bills both from the ER stay and the 20% I’m required to pay under my insurance. PLUS I still owe money to my OB/GYN ($600) and have the $237/month premium for the insurance to continue paying. So your support is still appreciated!!

As a result of this medical and financial crisis, I am asking everyone to help pass on my story and link(s) to help raise the money I need.

Hysterectomy Fund





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Friday, May 27th – Saturday May 28th


I went home from work that night and started having bad pain in my lower abdomen. Both a pressure and a sharp pain. Worse on the left side but really on both. It also went through to my lower back as well. Once it started, it remained non-stop and as the weekend progressed, it got worse. The pain was so intense I couldn’t stand upright. I was doubled over and could barely get myself out of bed or off of a seated position.

Sunday May 29th – Monday May 30th

Overnight Saturday-Sunday from about 4am-6am I was violently ill for hours with stomach issues. Sunday morning around 9-10am, I was throwing up the water I was trying to drink. By Sunday afternoon the pain got even worse. It spiked to a 10 out of 10 in pain and I knew I had to get to the ER. It was almost impossible to get down my stairs (I’m on the third flood) since I couldn’t stand at all but I couldn’t bear to be carried.

We got to the ER around 5pm. I went though triage and they gave me 32oz of this contrast liquid to drink for a CAT scan. Problem was I hadn’t really been able to eat or drink more than a few sips in two days. I was getting really ill from the contrast but they wouldn’t give me anything for nausea or pain until I got into a room.

Around 8:30pm they got me back and I finally got my first meds. They gave me an anti-nausea and morphine injection through IV. Around 10pm I had my CAT scan. Sometime after midnight I had an ultrasound, then after that a second one internally as well as more morphine for the pain. Around 3am the OB/GYN came in from home to consult and take over my case. They knew from the CAT and ultrasound the problem was not GI related but rather because of masses in my uterus. The OB/GYN doctor also changed my pain med to something else since the morphine was helping but not enough.

He explained what was going on and there was some concern about one of my ovaries as it could not be visualized due to the tumors and cysts. (He was afraid they might need to open me up and check that it hadn’t become twisted which can happen with the cysts get in the way and which would basically “kill” the ovary due to lack of bloodflow. The risk was low and I agreed we could hold off on emergency exploratory surgery if he felt it wasn’t a definite problem.) I would, however, need a hysterectomy to resolve the underlying problem since the pain was because of the sheer number of tumors and cysts in my uterus and because the cysts were so large there was risk of them bursting. (Which can lead to internal bleeding.)

I was admitted around 5am to a room. I slept on-and-off for a few hours. His partner came to check on me that afternoon. She decided since I was stable enough and the pain was manageable with the meds, I would be more comfortable waiting until surgery at home. The doctor wanted me to follow up with the office and try to get in for pre-op appointment Tuesday to get on the OR schedule for Wednesday as that is his normal operating day. I tried calling the office when I got home but they were closed for Memorial Day. I got home late Monday afternoon and basically went to sleep until Tuesday, only getting up every 6 hours for my medication.

Tuesday May 31st

I spent the whole day back-and-forth on the phone with the doctor’s office. They were waiting on my records from the hospital and the billing woman was giving me all kinds of incorrect information. That’s also when she told me that they would need $2,000 up front before they could even get me on the schedule for my hysterectomy. I made the first available appointment on Thursday to get in, see the doctor and get to the bottom of things plus see if I couldn’t work out some kind of payment plan.

Thursday June 2nd

Thursday my Mom came and drove me up to the appointment. I met with the doctor and went over things again. I had a pelvic exam but needed two others which I was unable to do because of the pain med I was on. He switched my pain med again because the one I was on was just tearing my stomach up and runs risk of ulcers when taken in that high a dose for long periods of time. We were able to work out a payment schedule where we’ll put about 50% down (or about $800-$900 down) and then the remainder will need to be paid in 3-6 months after the surgery. We made another appointment for the following day for the other tests I needed.
(Also had to pay office visit bill: $140)

Friday June 3rd

Friday back to the office. (Office visit bill: $275) They had me take Valium prior to the appointment because the procedure I needed was stressful and painful which meant I couldn’t drive. My mom brought me up to the appointment again for the second day in a row. I had two more ultrasounds (an external and an internal) to get a better look at the tumors and also a uterus biopsy where they had to take a piece of the uterus wall out. (The painful part.) The ultrasound reveled more then the one from the ER and showed I had more masses then they had originally guessed. I have multiple ones that are softball sized and several that are baseball sized. The ultrasound tech had never in all her years seen a uterus like mine and couldn’t even make heads-or-tails of what she was seeing since the tumors were so pervasive. The doctor said the total mass of the tumors are the size of a basketball. My uterus is the size of a woman who is over 4 months pregnant.

This puts me at just too high of a risk for the surgery right now. High risk is considered 250 grams of tumors. I have approximately over 1200 grams. The tumors need to be shrunk before surgery. If we did it now, it would be 4-5 hours under anesthesia and the bleeding risk would most likely involve several pints of transfused blood. Being under that long is dangerous and he does not want to risk my health to that degree. So we’re doing something radical and I’m going to get a shot which will induce a medical menopause.

The shot is $1,000 but the doctor is donating it to me. The shot, in low doses, is used for fertility, but in high doses will basically cut my estrogen production down to almost nothing. The tumors are fed by estrogen so the idea is that by stopping that, they can starve the tumors. He wants to get them down to 600grams if possible which will cut the surgery time in half. The shot is not without it’s risks and problems of it’s own. Of course, it will bring about a temporary menopause which will also bring about all the fun symptoms related to that. Because mine will be abrupt though, it can be much worse. (Normally, a woman’s hormones taper off naturally and gradually over years, not all at once.) I will have two weeks of extremely heavy bleeding followed by two months of the menopause symptoms.

This is where it gets complicated though. I have absolutely no way of knowing how badly it will impact me. I have no way of knowing how I will feel, if it’ll be some good days, some bad days or just a constant. I have no idea how the pain will be, I have no idea how it’s going to affect my migraines. I have absolutely no way of knowing how I’m going to be able to function for the next two months overall, let alone day by day. Until it’s in my system and until I’m past the two weeks of transition period, I really can’t say at all. The doctor said there are some things he can give me (low dose hormone patches and such) pending on how it impacts my quality of life and my ability to function, but that’s all going to depend on how I am in the first place.

My appointment for the shot is Tuesday, June 7th at 10:45am. I will try to pin down a timeline of sorts from him and get more details at that time. I was a little loopy on the Valium when we were going over it at the appointment on Friday. I could be back to work as soon as Monday June 13th or, I might need the two weeks of transition off, or, I might need longer to deal with the symptoms. I really can’t know until I’m there.

In the longer-term, I will be on this medication for the next two months. After that, I presume we’ll redo the ultrasound to check on the size/weight of the tumors and if they have significantly shrunk, schedule the surgery. The surgery will be approximately 4 weeks of recovery time with a possibility of up to 6 weeks though of course, this is a few months out so I would know that when the surgery gets closer and we know the final size of the tumors.

Monday, June 6th – Denied Medicaid

In Florida, Medicaid goes through the Department of Children and families. And in order to qualify, you must either be pregnant, have a kid, be disabled or be an illegal resident. It’s the height of irony that my uterine tumors which make me infertile, also prevent me from being approved for medical help.

Tuesday June 7th

First, I got the shot. I only got a 1 month shot instead of the three month shot. (I thought he said two but I was on Valium at the time so I must have misheard.) I was really concerned about the side effects and once I took the shot if it was hell, there was no undoing it. So he gave me a one month to see how it goes. Also, I now know what the name of the shot is: Lupron. I have a follow-up visit in two weeks. (June 21st @ 1:15pm) The follow-up visit will be between $80-140. (Today’s visit was $48) After the next visit, we will determine how things are progressing and whether I will get another one month, three month, or just go for surgery. It just depends on how the tumors shrink, how I feel and finances too I suppose.

The other thing I discovered is that I have a $612 balance from the hospital treatment. It’s separate from the hospital’s own bill so it won’t be covered if the hospital gets any charity aid for me. It also needs to be paid prior to the surgery. So in addition to the down payment of $800, now I also need to pay the balance of $612. The new goal is now $1,400 upfront and a total of $2,600 all together. (Not including things like the office visit costs.) Paid office visit: $48

Many of my online friends are donating crafted items for a medical fundraiser. I’ve opened up Phoenix Funds today which only has a few items so far but more should be coming soon. It’s in addition to my shop which of course will also go towards my medical bills and expenses. Anyone who can pass on one or both links I would appreciate it. Also, if anyone has handcrafted items, craft supplies or vintage items to donate, please let me know.

Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

That updates us through today’s appointment. As always, I will continue to update this as events happen.

Thursday, June 9th

Well, I had wanted to get back to work for a couple weeks while on the Lupron, but my work will not allow me to return without a note stating I am 100% cleared for all my duties and my full schedule. Obviously I can’t say that right now as I am under continuing medical care and would be in-and-out as I was able to work and inbetween appointments. This means we are now completely down an income. It is absolutely vital that I get people to make purchases and pass along my links in order to offset my lost income.

You can also find updates on the Phoenix Funds Hysterectomy Fundraiser Facebook Page.

Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thank you.

Wednesday, June 15

My hospital bill showed up last night. While in the ER, I had two shots of morphine, fluids, anti-anxiety medication, and a strong NSAID painkiller. They did blood work, a CT scan as well as two ultrasounds (one external and one internal.) I was in the hospital from Sunday around 5pm until discharge Monday around 3pm. Here’s my bill.

$13,347.20 Yeah.

But, they’re nice enough to give me a “40% uninsured discount.” Oh well, that’s MUCH more manageable.

I mean that brings it way down to $8,008.32 – Pocket change practically! Who cares that I didn’t even make that much money for the entire year at my day job last year?

Let’s not forget, I still need surgery. Which will include a minimum of an overnight stay again. And which will, I imagine, be more expensive then the bill I just got. For which, I need $2,600 just to pay the OB/GYN and which does not include the hospital or the anesthesiologist fees. For which I still won’t have insurance for.

Now I filled out the paperwork with the hospital to request charity to pay some or all of my $8,000 hospital bill. But there’s no guarantee I’ll be approved. And even if I am, it may not pay it all. And, in any case, I still have another round of medical bills forthcoming when I have the surgery. At this point, I’m not even sure the hospital will actually allow me to schedule the surgery. I asked the financial aid woman how that works and if I can get pre-approved for additional charity for the surgery since I need further medical care. She said when you have the surgery date set, to contact them again and work out “a payment plan.” Which means, they might require money down as well – money I can’t even know how much it’ll be until I have an OR date set.

Do you see the absurdity of all of this? Do you see why my blood pressure is 159/90 right now? Do you see why I can’t sleep, am in a perpetual state of panic, am scared for my very life and yet powerless to do a damned thing about any of it?

Do NOT get sick in America. If you’re like me, odds are you won’t be able to afford to get well. And if the illness doesn’t kill you, the stress probably will.

Additionally, I made a YouTube video to explain what’s going on and to give another outlet for spreading the word. http://youtu.be/_wn_iInN8k4

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Monday, June 27th – Appointment Update

I had my 2-week follow up on June 21st. The OB/GYN put me on a low-dose add back hormone pill called Femhrt. It’s ironically the same two ingredients that was in my birth control pill, just in much lower doses. He gave me three months of samples for free. Very nice of him since it’s apparently expensive. The dosage is 0.5mg Norethindrone / 2.5 mcg Ethinyl estradiol for those curious. (Compared to 1mg/0.035mg respectively in my old BC Pill.)

The reason for the add-back is that the first two weeks of Lupron apparently are not that bad. And I was already experiencing problems such as fatigue, body aches and some hot flashes. He suggested I try the hormones and see how it goes. Since they are the same ingredients I’ve taken for like 8 years in Pill form, I feel confident that I won’t have any weird side effects from that as my body should already be familiar with them.

Since then, he’s right though. I have had some further menopause/Lupron symptoms. Thursday, June 23rd I went to bed but woke up every 45 minutes with the most awful hot flashes. But that sounds very mild compared to the experience. What it felt like was being cooked in an oven from the inside out. The intensity of the heat woke me up over and over the whole night through. That was the worst night of it though I’m also experiencing insomnia problems in general; difficulty falling asleep and waking up many times all night long. Sucks. Definitely not the norm for me either.

I have my next appointment July 7th. He wants to give me a 3-month Lupron shot at that time. He feels that’s the only way to get the shrinkage we need to make surgery safe enough to proceed. Bad news is that means three more months in limbo. Three more months without a job, without income, and with these miserable side effects. Means my surgery wouldn’t be until at least October. Fuck, I just want this to be over already!!! The only good news is that it gives me longer to raise the money. But without income for that long, I fear it’s going to be much harder to just sustain our normal bills let alone raise the extra money we need.

Paid office visit: $88

Monday, June 27th – Possible Medical Insurance

The other pending news might just be good news if it pans out. I was able to sign up for the Pre-Existing Condition Insurance Plan (PCIP) last week too. Now I had heard of it before. But it requires you to have been completely denied for medical insurance before you can even apply. Typically applying for insurance with a broker/agent means a month or more of waiting for approval or denial. It’s a very lengthy and tedious process. Well, my Mom is awesome and she made some calls. She found out that I could apply online for a Blue Cross & Blue Shield insurance plan and because the approval/denial was a yes/no thing done by computer rather than a human, it tends to be much more strict and would turn me down based on my condition. And it did! (Never been so happy to be denied for something!)

I’m waiting to hear back. If I get approved it’s $237/month in premiums. (Ouch) And I’d have a $1,000 in network/$1,500 out of network deductible to meet as well. Figuring a minimum of 4 months on the insurance (3 months for the shot, one month post surgery – bare minimum!) I’ll need $948 in premiums. ($1185 for 5 months) I’ll also need to pay the first $1,000 of treatments/office visits. After that, I’ll pay 20%. So I’m still going to need well over $2,000 to cover the basic minimums of the plan. So the amount I’m trying to raise doesn’t change.

Now, the good news is that preventative care is FREE. That includes an annual physical and a mammogram (yes!!!) among others. It’s still A LOT of money but…it prevents me from getting a $13K bill from the hospital after the surgery itself. For the short-term, given the costs I’m going to be facing, it’s well worth it. (And then some.) I also still have the $600 balance to pay off from the consultation fees when I was in the hospital in the first place so the amount I need remains pretty much the same, BUT it will save me in office visits and surgeries. Basically, I’m getting a LOT more bang for my buck this way.

I’m waiting to hear if I’ve been approved.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, June 30th

Just wanted to take a moment to update and give my thanks on the fundraising efforts so far. As of this morning, there is $1,350 in my Hysterectomy Fund.

In addition to the funds specifically set aside (I transfer the money out of my PayPal to my bank account and cash it out and give the cash to my Mom for safekeeping to ensure it does not get spent on anything else) I also have funds in my PayPal from sales which are going towards medical bills (office visits, prescriptions, etc.) as well as living expenses (gas, food, etc.) Because I am now a month without a paycheck, those funds are just as important so sales in my shop are still literally life-saving for me right now. And I can’t say enough how much it means that I’ve had such a wave of kindness directed my way.

The response to all this has been so positive and the kindness I’ve received so far has been so amazing. It’s been a very long month of worry, expense, medication, side effects and hardest of all, waiting – but it’s also been a month of kind words, well-wishes, nice emails, support and genuine kindness that I can’t thank you all enough for. It’s going to continue to be a long few months as I go through my pre-surgery medication and trials and then eventually through surgery and recovery itself, but I thank you for sticking with me and being there in spirit as I’ve been on this rough road. It means so much more than I can easily express. Thank you all.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com

Friday, July 1st

Seriously?

That would be $1,220 due to the ER physician. This is a completely separate bill from the $13,347 bill the hospital billed me directly and the $248 bill the radiologist billed me as well. Bills sent separately from the hospital such as this do NOT qualify for the charity I applied for. (Which I might not even get due to income limits.) I’ve spent the past year – literally 12 months – working on rebuilding my credit. June 2010 I got a secured Visa just to start establishing credit again. My score is still “poor” but it’s going up. But it’s going to plummet again because I simply cannot pay these bills off. Especially not right now when I’m down an income.

It’s so damned depressing. Makes me want to just give up, I swear. It’s like why do I bother? How can I ever better myself when all it takes is ONE little event to completely ruin me financially? I’m so tired of getting these bills I can’t even express the sheer exhaustion and hopelessness they make me feel.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, July 5th

Just got a call from the gentleman at HCRA. I’ve been denied my claim to get assistance paying my $8,000 hospital bill. He said he scrounged the manual to look for any way to avoid including Love’s income but in all circumstances – even if it’s just roommates – total household income MUST be counted. So even though my bill is more then I made for the entire year last year, I am not eligible.

So I have a total of $9,476 that I’m responsible for between the hospital, the radiologist and the ER physician. And I have no income coming in. Fucking awesome.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, July 7th

Had my second Lupron shot today. It was a 3 month shot instead of the one month shot I had June 7th. Holy crap this damned shot hurts to get. And my entire left butt cheek/hip area feels like a GIANT bruise. Lupron is very thick and they use a VERY large needle so yeah, OW.

He did a brief exam – just externally pressing around on my abdomen – and said he thinks the fibroids are a little smaller already. He can still feel them but he thinks we’re making progress. So that’s definitely good news.

The bad news is that the doctor is also requiring that I go on blood pressure medication. My blood pressure today was 160/100. He’s afraid I’m going to have a stroke. I keep telling him I’m just EXTREMELY stressed but he says stress alone wouldn’t make it this high. The pharmacy was out of the medication today so I get it tomorrow. When I get it, I’ll post the name. This is a stop-gap measure until next month when hopefully, I will be on the PCIP (Pre-existing Condition Insurance Plan) and can go see a Primary Care Dr. to evaluate my blood pressure on a longer-term basis.

Today’s visit was $237. Brings my total office visits out of pocket costs to $836 so far. He wants to see me next Friday, July 15th to check on my blood pressure. So more office fees then too.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com
Donation Shop: http://PhoenixFunds.etsy.com

Friday, July 8th

Picked up my new high blood pressure (“hypertension”) medication today. The name is Labetalol. It comes with a whole list of scary side effects such as dizziness, indigestion, lightheadedness, nausea, stuffy nose, temporary tingling of the scalp or unusual tiredness. None of which sounds pleasant. In fact, I’m kinda freaking out over the side effects, precautions and two pages of warnings it came with from the pharmacist that I think it’s making my blood pressure worse.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com
Donation Shop: http://PhoenixFunds.etsy.com

Sunday, July 10th

Update on the blood pressure medication. Two days in, I’m exhausted. I knew this was a side effect but I didn’t realize how overwhelming it would be. Saturday I laid down for a nap twice because I was so unable to stay awake. I took a shower today and had to lay down soaking wet just in the towel on the bed so I didn’t pass out. It should get better but right now I’m almost useless. A little queasiness Saturday, no real dizziness/lightheadedness so far. A LOT of scalp tingles though which I thought was a weird side effect but turns out to be true. It feels like when you get a chill and goosebumps across your body, but only on your scalp. Over and over. Very weird.

Saturday took my blood pressure at the one of those machines at the store: 128/80. Sunday took it at a different store: 135/83.

So some improvement so far. Next appointment is Friday the 15th for a check on how I’m doing on it.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com
Donation Shop: http://PhoenixFunds.etsy.com

Tuesday, July 12th

For those who have lost track or just didn’t want to read through everything, here’s the current list of all my current meds.

Lupron – This is the shot I had in the doctor’s office most recently July 7th. I had a one-month shot on June 7th and then three-month shot second. This is the medication that puts me into temporary menopause and starves my body (and tumors) of estrogen. Like a natural menopause, the Lupron comes with all the “fun” side effects plus some scary ones unique to the medication. I’ve definitely noticed bad mood swings and a tendency to cry for no reason on it. Sucks.

Femhrt (0.5 mg/2.5 mcg) – This is an add-back hormone (norethindrone acetate/ethinyl) to counter the side effects of the Lupron-induced menopause. It’s actually the same two ingredients that used to be in my birth control pill but a much smaller dose. It has helped offset my hot flashes which is a relief!

Mobic (Meloxicam 15mg 1x/day) – This is a NSAID that I take to help with the pain from the fibroids. It can cause stomach bleeding and ulcers.

Pepcid – I take this with the Mobic to help prevent damage to my stomach.

Labetalol (100mg 2x/day) – I started this last Friday because I’m having problems with high blood pressure for the first time in my life. It’s normally low but it’s been high since this all started and my OB/GYN doesn’t want me to have a stroke.

This is a LOT for me. I used to only be on my birth control pill. (Which ironically I’m not on anymore!) I know it’s not a lot for some people, but for me, it’s insane how medicated I am these days.

Hysterectomy Fund





My Shop: http://PhoenixFireDesigns.etsy.com
Donation Shop: http://PhoenixFunds.etsy.com

Friday, July 15th

Had my appointment today for the one-week follow-up on the blood pressure medication. BP was 128/82 and doc was very happy with where I was at. (Considering a week ago it was 160/100.)

He also did just a simple external pressing on my abdomen to see how the tumors felt and he was impressed with the progress so far. Just in a simple exam like that he could feel a good amount of shrinkage has occurred so far. He wants me back in there in a month (appointment is 8/16 @ 1pm) for an ultrasound to really look at how I’ve progressed at that time. He feels we may even be able to plan and schedule the surgery if we see the shrinkage he hopes for on the next appointment. (Putting surgery most likely in that case in September.) Of course, it depends on the results of the ultrasound.

As for the BP med (Labetalol), the side effects have been awful. I told him how miserable it is; how weak, exhausted, tired, and out of it I feel on it. How limp and mentally hazy it makes me. How I have to stop halfway up the stairs to my 3rd floor apartment because I’m just overwhelmed. He said just stick with it until August 1st when I should hopefully have the PCIP insurance plan in effect (still waiting on the paperwork) and can see a primary doctor to get a physical and let him tinker around with what BP med is best for me. As an OB/GYN he doesn’t want to get into long-term blood pressure maintenance drugs. He just wants to ensure I don’t stroke between now and then.

But, aside from the miserable side effects of the BP med that are making my life a miserable fog, today was good news at the appointment. Now it’s just a matter of raising the rest of the money between now and then. Which is a HUGE worry and concern seeing as things have kinda stalled out recently. It’s not happening quite yet but we’re making progress and it will be here before we know it.

(Office Visit cost: $117)

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Monday, July 18th – Approved for Insurance!

I got wonderful news today. The letter from the Pre-Existing Insurance Plan (PCIP) came today. And I’m APPROVED! As of August 1st, I will have medical insurance which WILL work on my pre-existing gynecological problems and which WILL be able to be used toward my surgery.

As you can see, I need to immediately pay the $237 premium for August in order to ensure it starts August 1st. (It will continue to be $237/month in premiums which is expensive but my money goes a lot further this way.) I also have a $1,000 deductible so I still need to raise enough money to pay the premiums for the next several months, satisfy the deductible and pay my co-pays. So I’m not out of the woods financially yet. Here are the coverage details of the plan:

There is a prescription deductible as well which will come to effect for medication I may need. The good news is that my OB/GYN is IN-NETWORK for the plan.

Please note, this is NOT retroactive so the $10,000+ in hospital bills and ER bills I owe are NOT covered. I still have no clue how I’m ever going to pay those off. It also doesn’t matter that I’ve already spent $836 in office payments to my OB/GYN because they’re before the effective date of the insurance on August 1st. But moving forward, I will be able to have coverage for visits and the surgery including the hospital, the anesthesiologist, radiology, etc. so I won’t get another bill that’s tens of thousands of dollars.

This is a HUGE relief moving forward. Doesn’t solve everything but makes it all a little bit easier to ensure I can actually get my surgery.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Saturday, July 23rd

Blood pressure medication continues to suck with miserable side effects but at least it’s working!

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Monday, August 1st

Had our garage sale this weekend. A total of five households donated items to sell. We had quite a success and raised a two-day total of $655! It was a lot of hard, hot work and took us several weekends preparing for it but it was definitely a big help.

This brings the total to almost $1,100 cash in hand. The number fluctuates as I have office visits to pay for and medication to buy, but for the moment, it’s a decent amount, but still a long way from the total goal amount needed.

Remember, with the new insurance (that is effective as of today), I have a $1,000 deductible, $237/month in premiums and also must pay the $588 balance I have left at my doctor’s office for his portion of the ER stay. You can see how quickly this all adds up.

Even if you have previously linked to my shop, please consider doing so again. With this going on for so long, it’s easy for people to lose interest and/or think it’s already resolved but we still have a ways to go yet.

Thanks.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, August 2nd – Status of Fundraising and Breakdown of Money Due

My PCIP insurance started yesterday. Still waiting on the insurance card but technically, it’s active. It doesn’t really change the total goal of how much I need, just changes how it gets spent and what I get for the money.

- $1,000 deductible (means I still will be paying for office visits but they will go towards the deductible from now on.)
- $588 due my OB/GYN (this is a balance on my account from previous services including in the ER which must be paid before surgery.)
- $237/month premium (with a minimum of 4 months and most likely more, at least another $948 just to maintain coverage.)
__________________
Total: $2536

That doesn’t include any prescriptions (which has it’s own deductible), and doesn’t include the $10,000 in bills I owe the hospital, ER physicals group, radiologists or labs from my ER stay.

The $953 I’ve spent to date on office visits and tests does NOT count towards the deductible either as it’s all for services before the active date of the insurance.

The $588 balance I owe the OB/GYN is NOT part of the deductible for the same reason.

The GOOD part about the insurance is that it not only helps pay the OB/GYN, but also the hospital and other services like radiology and anesthesiology which I otherwise would have had to pay out of pocket had I been cash-only. (Basically, it would have been like the ER stay – tens of thousands of dollars in separate bills.)

But you can see why I’m still so desperate to keep the fundraiser going; why I can’t relax or rest on my amount raised so far. There is always MORE expense and MORE cost due! I’m still asking ANYONE with a facebook, blog, twitter, digg, stumbleupon, reddit, or any other social networking account to PLEASE post my link. Even if you have in the past, please consider doing so again. People lose interest and attention wanes but I’m still in the middle of this fight. It’s a marathon, not a sprint so I’m doing everything I can to keep interest up and keep my sales going.

Two months with no income we’re barely keeping our heads above water, let alone are able to save towards the medical costs so your help is desperately needed to keep this going. Thanks to all those who have helped so far.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, August 11th – Primary Care Visit

My insurance card arrived yesterday – just in time for my first primary care visit today. Same place Love goes so I’ve been there before, just not as a patient. Today’s blood pressure was 124/76 so that was good.

I met with one of the PA’s. I gave her the update on what has been happening medically with me, my fibroids, and my medications, upcoming surgery, etc. I also told her how I did not like the extreme weakness and fatigue of the Labetalol and that I wanted to try something else for my blood pressure. So I filled a $4 prescription today for Lisinopril. My last one was a beta-blocker, this new one is an ACE inhibitor. Dosage of 20mg 1x/day. This one doesn’t have to be taken with food like the last which is nice.

Common side effects: Cough; diarrhea; dizziness; headache; tiredness.

Lesson common, more serious side effects: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the hands, eyes, mouth, face, lips, or tongue; hoarseness); chest pain; dark urine; decreased urination; difficulty swallowing; infection (eg, fever, chills, persistent sore throat); irregular or slow heartbeat; stomach pain (with or without nausea or vomiting); symptoms of low blood pressure (eg, fainting, severe dizziness, lightheadedness); yellowing of the skin or eyes.

She said it’s pretty well tolerated normally and it’s been around for awhile and it’s well-used. She said it shouldn’t give me the crippling fatigue but she wanted me to try it for 30 days see how I do and we can always make adjustments if needed.

I go back on the 25th for a blood draw (I need to be fasting) for CBC, cholesterol, chem panel, thyroid, etc.

Today’s visit was $25 copay though I will probably have to pay a balance due on my next visit since I have a $1,000 deductible to meet.

Thursday, August 11th – Updated Medication List

Lupron – This is the shot I had in the doctor’s office most recently July 7th. I had a one-month shot on June 7th and then three-month shot second. This is the medication that puts me into temporary menopause and starves my body (and tumors) of estrogen. Like a natural menopause, the Lupron comes with all the “fun” side effects plus some scary ones unique to the medication.

Femhrt (0.5 mg/2.5 mcg) – This is an add-back hormone (norethindrone acetate/ethinyl) to counter the side effects of the Lupron-induced menopause. It’s actually the same two ingredients that used to be in my birth control pill but a much smaller dose. It has helped offset my hot flashes which is a relief!

Mobic (Meloxicam 7.5mg 1x/day) – This is a NSAID that I take to help with the pain from the fibroids. It can cause stomach bleeding and ulcers.

Pepcid – I take this with the Mobic to help prevent damage to my stomach.

Lisinopril – New high blood pressure medication I start today.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Wednesday, August 17th – Post Appointment Update

Had an ultrasound. I was at around 1,200 grams before. Yesterday? About 650 grams!! So we’ve cut the size down almost in half so far!! He had wanted to get me down to around 600 grams for surgery. He could do it at 1,200 but it would mean much longer under anesthesia and bleeding risks. Well, now that we’re down, he’s ready to get me on the schedule. I don’t have a specific date yet. His nurse will be following-up with me to schedule me about a month or so from now.

Sometime around the end of September I will be having my surgery.

He thinks that by then, I may even be down to about 400 grams because the Lupron is still in my system for another two months. So even better. The Lupron TOTALLY worked for me.

Right before surgery, I’ll have a final ultrasound just to get a last-minute check on things and I’ll also need bloodwork for cross and type for the surgery. But basically, we’re in the motions and stages of pre-op – finally and officially. Holy crap, now it starts getting real. (And really scary!!)

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Friday, August 19th – $70 Prescription

Holy crap. I just had to spend $68.31 on ONE prescription for 28 days.

I’m on the Lupron injection, right? (To shrink my tumors to make surgery safer.) And that puts me in a temporary menopause complete with all the way-fun symptoms like hot flashes, night sweats, mood swings, etc. So the doctor gave me three months worth of a very low dose add back hormone called Femhrt free. I take one pill a day to help put a little bit of estrogen back in my body and help counter the worst of the effects. (I still get some effects but they’re significantly reduced.)

So, I had a total of four months of Lupron; June 7th was a 30 day injection and July 7th was a 90 day injection. He gave me three 28-day packs worth so I’ll run out of Femhrt before I run out of Lupron in my system. The doctor wrote me a script for another month (actually he apparently put it for two months) but this time, I had to pay for it since my PCIP insurance started August 1st. (At $237/month premium mind you!)

Well, I have a $250 deductible on my prescriptions, so I had to pay the whole thing. All $68.31 of it for a 28 day supply. Holy crap! I don’t have that kind of money!!

$68.31 for 1 month (28 days) of Femhrt
(click for larger)

Not taking it really isn’t an option. So I had to get it. But that put a serious hurt in my funds right now. I mean serious hurt. Not sure what I’m going to do. There’s another whole week before Love gets paid and then, all of it (ALL) will be going to rent. So an unexpected $70 bill is really a problem.

On top of everything, Love and I both have been sick and miserable with a cold for days now. So that’s festive.

But holy crap…$70 for one month. Seriously, these bills are going to be the death of me.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Sunday, August 21st – Kindness

Ever since being in the ER, I’ve had a whirlwind of emotions; fear, anxiety, anger, resentment but also gratitude, thankfulness, amazement and wonderment. With the exclusion of a very limited few who showed their ugly, inner true colors, almost universally, I’ve received the most positive support. Friends, family, acquaintances, and even strangers have been so generous with their support both vocally and financially.

Between donations of money or craft items to sell and other aide like links and awareness of my cause, I’ve kept my head above water these past few months. I was able to pay almost a thousand dollars in doctor bills before my insurance kicked in and since it has, have been able to pay my premiums and start putting a dent towards that deductible as well. I went from a situation that was impossible – raising money when down an income! – to one that, with help, has been kept not only alive, but truly thriving.

Today I was the recipient of another amazing blessing. A substantial donation putting me within arm’s reach of my immediate total surgery goal. (The breakdown is: $588 due to my doctor, $1,000 deductible and $948 for a minimum 4 months premium or total of $2536 bare minimum to raise.) I don’t know if this person wants to be named, but I wanted to publicly acknowledge their kindness. $1,000 was gifted to my fund today and brings my actual cash-in-hand total to an amazing $1,933!

Where government resources and supposed charity and assistance programs have utterly failed me and totally left me between the cracks, the kindness of a dedicated group of individuals has gotten me leaps and bounds closer then I ever thought possible. It’s because of each and every one of you that I’m still here, still fighting and still able to keep striving towards my goal. And ultimately, when this is all over and done with, my health and my ability to move on with my life better then before will also be because of all of you and your care, support, kindness and generosity.

It’s all too easy to think the worst of people and to look at the problems of the world and believe that everyone just sucks. But let me assure you there is still goodness in the hearts of many. There is kindness in the world and there are still people who care. I’ve been truly blessed with getting to experience this first hand.

The battle is not yet won and some days it feels like I will never be done with this, but I know we’re getting ever closer and in truth, it will be here sooner then it seems. And again, it’s only because of you – all of you who have supported me – that I am where I am.

I won’t lie, many days the whole thing still scares me and facing surgery is not easy. But knowing that I have such a solid support system in place and so many people behind me, really does make it a little easier to bear.

So thank you to everyone for helping me get this far. We’re getting so close now and days like this remind me that all things truly are possible – with a little bit of kindness.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, September 8th – Still Waiting

So I’m still waiting to hear about when my surgery date is going to be. I had my last OB/GYN appointment August 16th and we left it as, “the scheduling nurse will call you for your surgery date!” and I left without any future appointments because any future appointments would be surgery date related.

Well, that was like three weeks ago. And EVERYONE keeps asking me if I have my date yet. (Seriously people, I WILL tell you when I get it. I promise!) And my sister suggested I call at this point because maybe it fell through the cracks to get me on the schedule.

Today I called around noon and left a message for the doctor’s nurse. And haven’t heard back. So more waiting.

I just want the date so I can stop hemming and hawing about what I can and cannot do in the coming weeks. I mean, I’m terrified of the actual surgery itself (I was actually shaking when I dialed the phone to call the nurse!) but I just want to know already.

So…still waiting.

Tomorrow I go to the primary doc for my bloodwork results from my physical. I’ll update with that tomorrow. And whenever I hear about surgery, I’ll update too. Promise! ;)

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Friday, September 9th – Bloodwork Results

Visited primary doctor today for follow-up results from physical.

First, blood pressure: 110/60!

Second, everything basically was pretty good. My cholesterol is fine, my thyroid panel was good, my kidneys and liver are fine. For a girl full of tumors, I’m pretty healthy.

The only bad news: I’m anemic again. My hemoglobin was 10.5 and should be about 12. I also had them do a ferritin level (this is the stored iron in your body) and it was 7 and should be a minimum of 13.

Very long time readers might remember my battles with anemia. I don’t absorb iron properly. And I can’t take iron supplements as they make me violently ill. This led to years of chronic anemia. (Exasperated by my very heavy periods.) I got on the Pill and found a hematologist who gave iron via IV. (I had it 5 times a week for 3 weeks.) That basically “cured” the problem. It was a like a car without gas and now I had a full tank. He warned me though, that because of my absorption issues, I would probably eventually run through the stores. Could be a year, could be ten. Well, looks like I’m starting to use up my supply again. So they gave me a referral for a hematologist to follow-up with and see if we can’t do the same thing again as last time.

I’ve called the hematologist office and they will call me back to schedule an appointment when they get the records. Hopefully, I can get that going quickly. But it depends on when my surgery winds up being. (Which NO, I still haven’t heard back.)

I also got a flu shot today. My first actually. It made sense because I have upcoming surgery and I’m in-and-out of a lot of doctor’s offices right now and the LAST thing I need is the flu with surgery. Right now, my damned arm aches. Holy crap. Hopefully that’s the extent of the side effects.

Here’s the lab results for anyone interested. Click for larger.

Waiting to hear back on surgery. And waiting to hear back for anemia. But as of right now, that’s all my current and outstanding doctor’s appointments.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Friday, September 9th – Surgery Date!

OMG the nurse called me while I was out at Target. Surgery is going to either be Wednesday, September 21st OR Wednesday, October 5th. She’s shooting for the 21st. Which is only a WEEK AND A HALF AWAY. *panic*

Wednesdays are his OR day. And we can’t do it the 28th because the 29th is Rosh Hashanah and as the high holy day of the year, you’re not allowed to work on that day. So he’s not doing any surgery the day before to ensure he doesn’t have any patients on that day.

She’s sending over the info to the primary doctor for my pre-surgery release info. I told her I just had a physical so that might count as clearance for my surgery or I might need a different appointment. And I need to get in for a blood type/cross in case I need a transfusion during the surgery and I need a final, last-minute ultrasound to see where we are at.

But if all that happens quickly enough, it might be the 21st!

Panic!!

(She’s off Monday and Tuesday so she’ll get back to me on Wednesday the 14th to let me know if we’re a go for the 21st and if so, what I need to get done in that last week.)

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Sunday, September 11th – Decisions

Well I’ve had a few days to think about surgery now and I think Oct 5th just makes more sense for a lot of reasons. There are still a lot of things we need to do and prep work for surgery plus our anniversary is the end of the month and I would hate to miss that.

I just don’t think the 21st gives us enough time to make sure we have everything in place. Last thing you want to do when facing surgery is rush, you know?

So I think I’m going to tell the nurse we are go for the 5th instead.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, September 22nd – Surgery Date and Time

Just talked to the doctor’s nurse. We’re set for the surgery and pre-op appointments!

Pre-Op – Monday, October 3rd
With the doctor: 9:45am
Final Ultrasound: 10:45am
With hospital: 1:00pm

Surgery
12:30pm Wednesday October, 5th.
The doctor is assisting with a very long, very complicated surgery in the morning apparently so she wanted to give him enough time which is why I have an afternoon time.

Eek!

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, September 28th – More Money Woes

Talked to Donna – the billing person at my doctor’s office. She was going over the insurance approval process and billing side of the surgery. My insurance is $1,000 deductible for the year (I think I still owe about $670 or so towards that) and the insurance pays 80% and I pay 20%.

So I owe my doctor $482 for surgery and I have a $629 balance on my account. For my pre-op appointment on Monday, she wanted the full $482 but I told her I don’t have that since we’re between paydays. So on Monday I’ll bring $300 and then on Friday the 7th (Love’s payday) we’ll pay another $211. (Bringing my balance down to a flat $600.)

Okay, fine. The problem is that apparently I need to bring money upfront to the hospital too on Monday. Problem is, I don’t know how much they’re going to require.

Problem is that until the 7th, we’ll only have about $200 left in the fund, cash on hand. If the minimum they want is my deductible amount, I’m $400-odd dollars short. If they want some percentage of the 20%, I’m completely screwed.

I broke down crying on the phone with my Mom because I just can’t bear to come this far and have to postpone or delay it for more money woes. I just can’t. This constant money worry is killing me. I just want to get on with my damned life.

So now I won’t know anything until Monday. Mom thinks we can “work with them” but I’m not as confident. If they want a set amount and I don’t have it, I don’t know…

8 days and counting. Hopefully.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Wednesday, September 28th – One Week Until Surgery

Today is exactly 1 week until surgery. Goodness gracious, I’m getting nervous. I also had my pre-op clearance with my primary doctor today. Most things were good, but, nothing is ever straightforward so…here’s what’s going on.

Blood Pressure
First, my blood pressure was 98/64. Which is actually a little low, especially since I’m on medication for high blood pressure. I’ve been a little woozy and having some lightheadedness when I stand up quickly and I think it’s because the meds are making things too low now. I talked to the doctor about it and she agrees that the Lupron might be the cause of the hypertension in the first place and she wants me to half my pills (take 10mg 1x/day instead of 20mg) and we’ll continue to evaluate. She anticipates we will probably come off it completely if we continue to see it regulating itself as the Lupron continues to wear off.

Kidneys
Second, there’s blood and protein in my urine again. Apparently A LOT of it too. But no white blood cells which you would normally see if there was an infection. I asked them to do a urinalysis anyway to culture for bacteria (I could have a “silent” UTI) but the levels were apparently so high, the doctor wants me to do a kidney ultrasound just in case to see if there’s stones or infection. Because of surgery, they want to make sure there is no problem. So I made an appointment tomorrow at 10:30am. No idea how much it will cost. Hopefully, they’ll bill me and I’ll worry about it later.

Bloodwork
They also drew blood to check the final things needed in addition to the full CBC and such they did last month in my physical. I guess they need to check the thickness of the blood and such…? Dunno, it’s all new to me. They will fax over the results to the gyno though when they come in.

Clearance
The doctor cleared me physically though for surgery. They just need the bloodwork results to ensure there’s no problems that we can’t see and the ultrasound as a precaution. But, based on physical evaluation, I’m cleared. So that’s one step of seemingly endless steps in the next 7 days.

Other Appointments
Still a LOT left to do in the remaining days…

* Tomorrow (Thursday, September 29th) – 10:30am ultrasound of kidneys
* Friday, September 30th @ 10am with hematologist
* Friday, September 30th @ 1:30pm – pre-op massage. (Dammit, I’m sore, tense, and stressed and won’t be able to have one for awhile)
* Monday, October 3rd @ 9:45am Pre-op with gyno
* Monday, October 3rd @ 10:45am – pre-op ultrasound of uterus (final look where we’re at tumor-size wise)
* Monday, October 3rd @ 1pm – Pre-op with hospital

So that’s where we’re at today, with 7 days left to go. I’m seriously doing EVERYTHING I can to ensure nothing hinders the date or causes us to delay for any reason. I want this over and done with dammit and come Hell or highwater, I want it to go forward October 5th as scheduled!

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, September 29th – Kidney Ultrasound


Well, so much for hoping they’d bill me.

Receipt for your debit card purchase
Amount $121.00 USD
Merchant SDI DIAGNOSTIC

Awesome. Thankfully, I’ve had a few sales in the shop lately, so I was able to use the money in my PayPal account to pay it.

The tech said she didn’t see anything but that hers is not the expert opinion. The radiologist has to review it and my primary doctor should get the results today. *fingers crossed we’re all good*

The last thing she did was look at my bladder. I had told her about my upcoming hysterectomy and tumors, and she was like, “Oh yeah, I see what you mean! I can’t find your bladder for all these tumors in the way.” I was like, yup, that’s why we’re doing it. She sympathized upon seeing them and said it must have made for very painful periods and such. It’s one thing to tell someone about the size of your tumors, it’s another when they see them for themselves!

6 days and counting.

Update: 3:30pm

Called the primary doc to see if they got the results. They did and NO KIDNEY DISEASE! Yay!! They faxed over the info to the gyno and now tomorrow is the hematologist. We’re getting closer to actually managing to keep the scheduled surgery date as is. :)

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Friday, September 30th – Hematologist Appointment

I had my hematologist appointment this morning at 10am. They said to get there early so I arrived around 9:45am. I didn’t leave until 11:50am. Holy crap, they’re slow! The doctor’s nurse and the doctor himself were both very nice. The nurse even gave me a hug and wished me well with my surgery. But the wait times are just unbelievable!

The good news: they did a CBC today and my hemoglobin was 11.2 so it was actually higher than at my physical last month. No issues with surgery and they gave me a clearance even so another hurdle overcome! (Normal is 12 so it’s still a little low overall and my stored iron – “ferritin” – is still low so that means my body has a limited supply to replenish my red blood cells.)

They also did more extensive labs that I’ll get back later. The doctor said to have surgery and come back in a few weeks and get some more bloodwork and we’ll get me set up on an iron IV cycle. He does it 1x/week for 6 weeks. He thinks that with my hysterectomy and no further periods ever, this “loading” of iron in my system will probably hold me indefinitely. I agree. The last time I had iron it was like 8 years ago or more now and that held for this long even with periods, so without any periods, I should be good.

My follow-up is October 25th at 2:45pm.

5 days and counting and so far, so good! Next up, Monday morning gyno for pre-op, final ultrasound and then Monday afternoon with the hospital.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, October 4th – Surgery Tomorrow

There was a huge update on the normal blog HERE yesterday that goes over all the details of my final pre-op appointment and registration at the hospital. It’s too much to copy here right now.

Just posting a quick note to say I’m heading to bed now for surgery tomorrow. Check-in is 10:30am EST and surgery is scheduled for 12:30pm EST. I will be in for a 23-hour observation so I’ll be home sometime probably Thursday afternoon. I will have my cell phone with me but whether or not I will be able to update is another thing. Look for updates on the main blog page as applicable.

I’m scared but ready. I want to be healthy and I can’t wait to be home again and on the mend. Good thoughts and positive energy appreciated tomorrow.

See you on the flip side.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com


Friday, October 21st – 16 Days Post Op


I didn’t really have the attention span to update here on this page over the first two weeks of healing. But you can get the semi-daily updates here in the main part of the blog if you want to know how more details about my recovery.

In brief, surgery went perfectly. Doc said no complications and everything was “textbook.” Yay! I was released the following day, Thursday, October 6th.

The first two weeks were VERY hard. This is a hell of a surgery to recover from. Even though it was laparoscopic, that only means the external wounds are healing faster. The internal damage is still significant and really does impact every aspect of your life. It’s only now, more than two weeks from surgery, I am slowly able to wean off of my painkillers and have some more limited ability. So the process of healing is slow but I take comfort in knowing I am getting better and someday soon, will be healthy. (What a concept!)

The bills are already starting to roll in. I have $600 due to my OB/GYN. I have $1,200 due to the ER doc. I have $250 due in radiology from the ER. I have $700 in labs (as part of my $1,000 deductible) And that’s just the pre-surgery fees. More will be coming of my surgery and post-op bills. Plus, I still have the $237 in monthly premiums for my insurance. I’m sending each a little bit – $20 here and there as I am able – and it’s keeping them off my back for the most part, but with so many separate people billing me, it’s impossible to get them paid off. So I am still asking anyone to help support my shop and share my link to keep the word out there. It’s the difference between me being able to recover financially or not in addition to recovering my health.

Thank you to everyone for helping me get this far! Your continued support means the world to me.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, November 8th – No Iron For Me

So today I was supposed to get my first of the iron infusions to help solve my anemia. But it not only didn’t happen, unless I get tons more money, it’s not going to happen either.

I get there expecting to pay my $25 office visit but am told there is a $611 balance on my account. They send me back to see the financial lady. So $611 apparently for bloodwork and meeting with the nurse on my first visit because they are completely overpriced and at the time of my appointment, I had not yet met my $1,000 deductible. $611 Seriously?

So then she tells me today was going to be $88. Um, why? Oh that’s my 20% co-pay portion. So the ONE infusion today is $440?? And I need to have this every week for six weeks? So I ask her what about the $25? I thought that was what my visits cost. Oh, yes, they add that on days I meet with the doctor. (Which, mind you, I met with the doctor ONCE for 30 seconds. Both visits, I met with the nurse.) So on days I have the infusion and meet with the doctor nurse, I pay $88 PLUS $25. Oh and that’s not including my labs. Oh and the $611 is only from my FIRST visit. Who knows how much my second visit and second set of labs from last week will bring my total to.

I broke down crying. I told her about what’s going on. How I had to raise all kinds of money for surgery, how I’ve spent $5,000 so far this summer on medical bills, co-pays, insurance premiums and such. How I have $13k in bills from my ER stay. And how I have NO INCOME right now. She says their financing plans are 30, 60 and 90 days. (Oh yes because that will help.) She says they’re not going to let me run up a bill that’s “thousands of dollars” getting the treatments if I can’t pay for it at time of service. She canceled my infusion schedule and said to come in next week, pay $25 office visit, meet with the doctor (nurse) and discuss what treatment plan we can work out.

In other words, waste more time and money.

So…unless I can come up with $611 plus another $700 or so to pay for the six weeks of treatment, I can’t cure my anemia.

I cried all afternoon. I really can’t take this anymore. These bills and money worries are going to be the death of me.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Saturday, November 12th – Beyond Overwhelmed

Today we were on I-4 driving out to see the Festival of the Masters Art Show at Downtown Disney, with plans to see the dancing Osborne Lights and fireworks afterward (just to do something fun after so long not feeling well from surgery), when the engine light came on in the car, Love lost the gas peddle, the whole car shuddered and we wound up having to just pull off on the left side of a 4-lane interstate with cars whizzing by at 80+mph. Waited 45 minutes for a tow, guy could only hold two people but we had Love’s brother with us, making three, but he was able to sit sideways behind the seats in this tiny storage area while he drove us 40 miles back home.

We have about $20 to our name until Love’s payday Friday, I’ve had no sales in like two weeks, my hematologist won’t give me my iron treatments to fix my blood issues until I give him at least $611 plus $88/week for 6 weeks for the infusions, and oh yeah, the day we try to just go out and escape the overwhelming financial worries and stress and have a nice day out for a few hours, we break down on the side of the road and don’t have the money to fix it.

I’ve moved pretty much past “depressed” into “hopeless.”

Oh and fun fact, my surgery cost $40,000. Just got the EOB for it. That’s just the hospital. Of that, I owe $4,500 and another $500 to the anesthesiologist, $588 to my OB/GYN, $172 to my primary doc, $611 to the hematologist, $250 to radiology, $230 in labs, $966 to the ER doc and of course, $8,008 for the ER stay. And I haven’t had a paycheck in 6 months. And our car broke down. Anyone have a spare $15k they’re not using?

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com


Thursday, November 17th – Good Day Sunshine (AKA: I’m Healthy!)


I had my 6-week post-op appointment today. The doc came in the room and said, “Hello Sunshine!” :) Had my exam and he said everything is perfect. No problems, everything is healing nicely. I am off restrictions and unless I have any problems, I don’t have to go back until next June for my regular annual exam. Holy crap!! That’s so awesome.

He was thrilled with how I am doing, was so pleased with my progress and said I looked great.

I’ve been in such a good mood since getting the good news. It’s such a relief to know how much better I am doing. And also pleased to know how happy the doctor is too about how I’m doing. We were both very pleased. *chuckles*

Anyway, just happy about the positive results and thrilled to be healing so successfully!!

Thank you to everyone for your good thoughts and support through this. Knowing I’m healthy makes the $15k in bills a little easier to deal with. They suck but what DOESN’T suck is being well!!!

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Tuesday, November 22nd – Hospital Explanation of Benefits

This is why I needed insurance for my surgery. Without insurance there would be no way I could pay for this procedure. This is the EOB or “Explanation of Benefits” from my insurance (PCIP) showing the submitted claim for my hysterectomy from the hospital.


(Click for larger)

This is ONLY the hospital and does not include the doctor, the assistant, the anesthesiologist, the labs, my primary doctor (for pre-surgery clearance) or any other provider. The hospital billed $40,316.02 Forty-thousand dollars. Of that, the agreed rates between the insurance and the hospital took off $6,047.40. My portion due is $4,155.69. Almost forty-two hundred bucks. Which is a hell of a lot less than $40k, but still shows how HUGE an expense this surgery is. It’s why healthcare needs to be affordable for everyone.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Thursday, December 1st – Laid Off

It’s official as of today. I’m unemployed.

You recall my job would not allow me to work during my pre-surgery treatments for “liability” reasons. They flat-out told me that it was 100% or nothing and that they couldn’t have me coming back but taking time off for appointments and such.

November 17th I had my 6-week post-op appointment and was cleared from my restrictions. That same day, I received a letter saying that I was out longer than “agreed upon” (there was no agreement, they just told me I couldn’t come back until I was cleared) and that because I was part-time, I didn’t qualify for FMLA which would require them to hold my job. And that my job was no longer available.

I filed for unemployment on the 2nd and I picked up my stuff on December 6th.

It’s a fine way to treat someone.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com


Saturday, December 31st – Good Bye 2011


Thank you to all my friends, fans and followers for helping make 2011 such a successful year. With your help and support, I was able to turn to my business as a means of not only keeping the bills paid, but being able to pay for my copays, premiums and other medical expenses leading up to and including my major hysterectomy surgery on October 5th.

My day job didn’t hold the position for me so I found out what was supposed to be temporary medical leave is now permanent, but I’m taking it as a positive sign to continue to focus on my jewelry and build my business even further.

2011 may have been an impossibly difficult year emotionally, physically and financially for me, but it was also one filled with blessings, care, support and prosperity in my business. Thank you to everyone who was a part of that and know I appreciate your continued support!

May we all have a bigger and better 2012!

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

Monday, January 23rd – Financial Recap of 2011

In preparing my taxes for 2011, I had to crunch some numbers. Maybe this will help give a better idea how much of an uphill battle this entire process has been and how, even 3.5 months post-op, I’m still drowning in debt.

Salary
I made a total of $4,017 for 2011. I went into the ER over Memorial Day weekend and couldn’t work the rest of the year as a result.

Medical Bills
I did not have insurance when I went in the ER because my job didn’t provide it and I couldn’t afford to spend half my income on it each month. My PCIP insurance started August 1st. From May – August, I had to pay cash, out-of-pocket. August onward was $1,000 deductible and 20% copay.

ER Bills
ER – $8,008
ER Physicians – $1,200
OB/GYN (ER Visit) – $600
ER Radiology – $1,000
ER Labs – $300

Outside of the ER, I also had to pay to see the doctor, have tests, radiology/imaging, prescriptions and labs out of pocket from May – August 1st.

Then, in August, I started paying $237/month in premiums. I also had a $1,000 deductible and pay 20% of all costs.

Paid in 2011 (not including amounts still owed)
OB/GYN – $2,000
Ultrasound – $121
Premiums – $1185
Primary Doctor – $200
Assorted co-pays – $200
Prescriptions – $400
Gas/Mileage – $300
Payments towards debts – $916
_______________________
Total: $5,322
You recall I only made $4,017 for the entire year, right?

Still Owe
OB/GYN – $550
ER Docs – $930
ER Radiology – $188
ER Labs – $145
Anesthesiologist – $445
Primary Doc – $160
Hematologist – $1,200
Hospital (surgery) – $4,155
__________________________________
Total: $7,773

So I’m working on it. But, I’ve been paying out more than was coming in, ontop of my normal monthly bills. Several debts are starting to go to collections despite paying them each month. I’m financially crippled right now and it’s why my shop sales are so critical. I’m just maxed out and beyond broke.

Hysterectomy Fund





Donation Shop: http://PhoenixFunds.etsy.com
My Shop: http://PhoenixFireDesigns.etsy.com

26 Comments

  • [...] Help Raise Money for Miss M’s Hysterectomy Fund! ** Donations Needed ** June 10th, 2011 | Category: Charitable Donations,Healthcare,shopping I blogged about my friend, Miss M, last week. She’s had a few updates since then, and in her own words: You can follow the progress of visits, current health, etc on my blog with my hysterectomy tag but this is just a summary of the situation. The full details can also be found here: http://giveneyestosee.com/blog/hysterectomy/ [...]

  • John says:

    I just have a question/comment: Have you discussed with the hospitals/doctors about charging you insurance rates? By this I mean a hospital will not be paid by insurance what a procedure costs so they will write it off but they will charge you that. For example, they bill an uninsured person and an insured person both $20,000. The uninsured person will try, as is your case, to pay the 20 K in installment. However, the insured person’s insurance will refuse to pay the full amount and may only pay $10,000. So the hospital will just write off the rest of the 10K.
    Just something to inquire about.

  • miss m says:

    Well, I’m trying first to get approved for a medical charity through the hospital that would pay some or all of the bill. If they pay off the bill, I honestly don’t care what the amount is, so long as it’s paid! But, if that doesn’t work, I will try to get a further discount. Though, they’ve already taken off a “40% uninsured discount” so I’m not sure how much more they’d be willing to go.

    The OB/GYN for whom I need the $2,600 for surgery – that IS a discounted rate. And, the $463 in office fees (not including tomorrow’s appointment) is also discounted. You can see the amount paid to the OB/GYN so far here: http://www.facebook.com/media/set/?set=a.154822831254649.35112.154119384658327 which also shows the discounts for being a cash payment.

    Even at discounted rates, it’s a TON of money. Especially when we’re down to one income.

  • [...] I’m still out on unpaid medical leave and will be for some time now (see all the details here), it seems like there are just never enough hours in the day! Not enough time to make, photograph, [...]

  • [...] proceeds for this item go towards medical bills and upcoming surgery expenses so your support is greatly appreciated. This and many other neat items are available in the [...]

  • Helen says:

    In the UK we moan constantly about the state of the National Health Service, but after reading this, I am just so thankful for it!

    I really hope you manage to reach your target, and, although it won’t be much, I will do what I can to help.

  • miss m says:

    The system as it stands here in the US is entirely broken. Over 50 MILLION Americans don’t have heath insurance and somehow, that’s preferable to a system which everyone can get help. *shakes head* I don’t get it.

    Thank you for your support. Six days and counting right now until surgery!

  • Keith L says:

    Miss Turner,

    I can identify with your medical problems, because I have Arthritis, Bell’s Palsy, Carpal Tunnel, Degenerative Back Discs, Diabetes, Diverticulitis, Eczema, GIRD, Gout, Heart Disease, Kidney Disease, Liver Disease, Meniere’s Disease, Myopia, Rosacea, Tinnitus, etc. I wish you well!

    BTW, I’ve passed your story on to my Facebook friends and family. Hopefully we can help your financial situation. My wife is a recent Breast Cancer survivor. Fortunately, hers was Stage 1, and was operated on easily (but that’s not what she’d say ;-)

    Good Luck and may God bless you!

    Keith L
    St. Louis, MO

  • miss m says:

    Sorry to hear of your own medical problems. It’s very difficult to deal with chronic illness. (My Mom is disabled with Lupus, RA, etc.)

    Thank you for the well-wishes. My sister is a breast cancer survivor too, so I’m glad to hear your wife is doing well! It’s a cause close to my heart too.

    All the best to you and yours as well!

  • [...] a long-time friend of Miss M, I know what she’s been through. She’s not kidding when she said she tried all other avenues for [...]

  • L. A Green/Dewshinesdopp says:

    Just FYI there is this wonderful thing called a “contractual adjustment” for insurances. The hospital pretty much gave you the standard contractual that all insurances give. Inusrances often get even more off, plus there are these wonderful things called “customary charges”.

    Get an actual itemized bill from all people charging you, then look up each item on google along with the custmary charges. You should not have to pay more than that for anything on the itemized bill. Go thru it line by line, and deduct anything above “reasonable and customary charges”.

  • PetLon says:

    I would really love to donate several bucks for you, M, but sadly I have neither income nor a paypal-account. I feel so bad for you, though. I really hope you’ll get good income, so you can pay off your bills. Beset wishes for you, M, and I hope you won’t get it back. I feel so lucky for having a good health-care situation in my country.

  • miss m says:

    Thanks for the support. :) By doing the full hysterectomy, it won’t come back. Had I done a myomectomy (just removing the tumors themselves), they would have which is why this is the option I chose.

  • xouth says:

    i was in your situation and was paying a 600 premium and was also denied. It was my Dr. Office that referred me to PCIP and I am excited to get this done. I am glad to know ahead of time that its not an easy recovery and i hope you are able to financially recover as well, thank you so much for this informative blog

  • miss m says:

    First off, let me say I’m glad you were able to get help both from PCIP and in the information on the blog. Second, I hope your surgery goes well and you have an easy recovery.

    That said, I definitely would take it easy for longer than you probably would expect. You only have one chance to heal right so look after yourself!

  • Amy says:

    Miss M,

    I just happened upon your blog today. I am SO glad that I did. I had a total hysterectomy three and a half months ago. I had several fibroids, and I had so much scar tissue from previous surgeries that my doctor had to call in an oncologist to assist her in cutting through the scar tissue. In fact there was so much scar tissue that when she opened me up she could not even see my uterus. Crazy, huh? I have recently had some ‘healing pains’ that I was not sure was normal. After reading this I realize I am still healing, and it has not been that long. I had some very light, light pink bleeding over the weekend. That was only after I had a BM where I was pushing. It was probably sutures that were dissolving. It has stopped now.

    I am SO very sorry about your lack of medical coverage. I have not read whole whole blog in it’s entirety, so you may have answered this question already. Were you on short term dissability from work? Under the FMLA law your job has to make sure you still have a position when you are out on short term disability.

    Thank you for your swelly belly comments. I was beginning to think I was gaining weight. I went out and bought new clothes, and I was so depressed. Now that I have realized (a few months ago) that it was just swelling, I feel kind of silly. Oh well…..I do not mind having the tailor take up my pants!!!! I hope that you are doing well. Feel free to e-mail. None of my friends have had a hysterectomy, so while they sympathize with me they do not empathize with me. It is nice to have someone to talk with who is close in age to me and is going through the same thing.

  • Chelsea says:

    Miss M.
    Thank you so much for sharing your experience. This is something I am just now looking into as my mother was diagnosed with cervical cancer yesterday. She is unable to obtain insurance as she donated a kidney 3 years ago and is considered to have that as a pre-exiting condition. What advise do you have as far as seeking out doctors and finding alternative funding? You are such an inspiration and your strength through this gives us hope.

  • miss m says:

    I’m so sorry to hear about your mom. Tell her to look into PICP – http://pciplan.com/ – it’s what I used to get my major medical insurance coverage. It’s specifically set up for people who have pre-exisiting conditions and can’t get insurance through other carriers. It works just like any other insurance and they paid 80% of my surgery costs. I was able to get charity assistance through the hospital for the remaining $4,500 that was my portion and I’ve just been slowly paying off all the other providers over the past year. Best of luck to her!

  • Hope says:

    I really appreciate your detailed account of your TLH experience. The information the doctors provide you with is so vague. I had mine 15 days ago & bookmarked your blog pre-surgery & refer to it often. I am currently out of work and can’t contribute to your fund. I will check out your store website as soon as I have some money in my pocket again.

  • miss m says:

    Hope you feel better soon! If you look through category “Hysterectomy” on the main page of the blog – http://giveneyestosee.com/blog/category/health/hysterectomy/ – you can find a lot of entries detailing my healing experience.

  • Emily says:

    I was lucky and my family was not affected by the government shut down but I would seriously consider moving to a more low income medical coverage state.

  • Frances says:

    I just wanted to say your blog entries describing your recovery made me feel so much better(validated); thank you. I had a hysterectomy due to endometrial cancer on Jan. 7th 2014. Thankfully the surgery was successful at ridding my body of the cancer and for that I am utterly grateful. I feel as though my family and friends have expectations for me to be further along in my recovery process than I am and as I had hoped to be at this 8 week mark. I do feel better outwardly physically but I am not as far along in the process as I thought I would be. I go back to the oncologist/surgeon tomorrow for my second follow-up. I am having extreme difficulty with menopausal symptoms but the oncologist says no HRT due to the cancer(unopposed estrogen). The hot flashes, sleep issues and exhaustion feel debilitating. It just feels therapeutic to write this to someone who I feel will truly understand.

  • miss m says:

    I’m glad to hear that my experience helped you! I really wanted to share the process in the hopes that other women might feel less alone in reading it. I’m glad to hear you are cancer free! That is wonderful. I’m sorry though that you’re dealing with the side effects and that your family isn’t as understanding of the long, slow recovery period. I always find that it’s hardest for people to understand things they can’t see. And just because you might look better on the outside, it’s important for them – and you! – to remember a hysterectomy is a LOT of internal injury. Give yourself the time and space to heal at your own pace. You only have one chance to heal right so don’t let someone else make you feel like you should be doing more than you can. I hope you get some relief soon and continue on your journey towards being healthy again.

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