So I'm starting to really loathe my new Operations NCO. On May 14th I submitted a packet to take leave from July 12 to the 25th to see my little sister come home from Afghanistan. No big deal. Submissions are allowed 60 days out, I submitted 58 days out.
I got my leave packet back on June 23rd saying it was denied because I'm supposed to take a PT test on July 20th, during my leave. They can't do that per regulation. So my boss went to talk to ops and comes to find out that I have to take a PT test before I go, or they cannot approve the leave.
Leaves have to be approved at least 14 days in advance. That's Monday. So we called Ops back to set up a PT test for Monday morning. No go. Ops was already gone for the day, it being 1430 on a Friday. So since reg says any E-7 or higher not in my chain of command can administer a PT test, we grabbed the E-7 that works in our office as a facility administrator who has no soldiers technically to come give the PT test at 0630 Monday morning. He said I can do it however I want, so long as it's done. He's as pissed about this as I am.
They beauty of the whole situation is that because we're doing the PT test, we choose our course. There are three certified courses on post. One's a long course (2.12 miles), ones an accurate course (2.0 miles), and ones a short course (1.78 miles). Guess which one I'm running? Yep, the one thats nearly a quarter mile short.
So now since we're doing everything by regulation, if the company still chooses to deny my leave, I have a valid IG complaint because of them forcing me to take a PT test with 3 days notice after have 44 days to have given me notice. Thinking about going to IG now, but I'll wait until after they deny my leave a second time, which I'm pretty certain they will do.
My mother in law took 2 weeks off to take care of my wife while I'm gone. My Grandparents are driving 1200 miles here to pick me up, then driving another 1800 miles to get to Ft. Lewis, Washington. Were going on a nice little vacation through Mt. Rushmore and the Black Hills on the way. So when they deny my leave again, it's going to screw up everybody's plans. IG is going to love me.
So I'm starting to really loathe my new Operations NCO. On May 14th I submitted a packet to take leave from July 12 to the 25th to see my little sister come home from Afghanistan. No big deal. Submissions are allowed 60 days out, I submitted 58 days out.
My First Sergeant, who is a former medic, decided that he is going to reccomend me for a med board after the kidney transplant. He was vocal about not wanting me to do the transplant because it's expiramental medicine. Since he is a former medic, he knows all the paperwork to have me shown in a negative light to get me chaptered out of the military. I would lose our health insurance which is the biggie.
If I decide to not give DW my kidney so I could then stay in the military, I would in turn be chaptered out on a compassionate discharge due to the longstanding and ongoing nature of dialysis and her need for constant care. Once more, losing the health insurance.
Damned if you do, Damned if you don't. The only major difference is that with a med board chapter, there are two options. First, and most likely, is a medical seperation payment, or severance pay, of about $40,000. The second, and not unlikely, is to be placed on temporary disability retirement until it is known if there will be any issues from the kidney transplant. I would draw $1200 a month based on this for up to 5 years, and then if actually medically retired, continue to draw that $1200 for life, adjusted for inflation. Still without health insurance.
Does anyone know anyway to get health care coverage for someone with a longstanding, permanent disability outside of from a group rate from an employer? Tricare is paying $70,000 a month for her right now. There is now way we could come close to affording any of that. If my First Sergeant is successful in chaptering me, it would be about a year from now. Im going to college full time for an economics degree.
So it's been a while since I last posted.
DW's health is great. She's been full of energy lately. We're just waiting for June to roll around to go to Mayo and start her treatments. Couldn't be going any better.
I'm still only working three days a week, which has allowed me to start going to school full time. I take 3 classes every 8 weeks. The college on post is allowing me to do an accelerated program and finish an associates in a year. The green to gold adviser is already working with me to get enrolled in that. Working out quite nicely.
The army eliminated all re-enlistment bonus's for NCO's in my MOS. Beauty of it is, my promotion board for E-5 is finally at the end of this month. So guess what. I re-enlisted for 6 more years and got a smooth $8,800 bonus. I also keep what bonus's are left from my initial contract. If I'm going green to gold anyway, might as well get as much money as I can. We'll see $6,600 of that now, and $1,500 of another bonus next month. Then our tax return will be a minimum of $2,700 next spring because that's the amount with-held from the bonus's and we claim exempt. So that finished off our 6 month EF at $10,000 and will put $2,700 in principal down on our mortgage next spring. Keeps getting better.
We're with Waddell and Reed right now for our Roth's. Not a bad company, but charges a 5% load. Terribly high. Problem is, Vanguard requires a minimum of $3,000 to open any single Roth. So since our EF is done, we'll start putting our 30% towards the Roth now which will allow us to switch to Vanguard by the end of the year. Their expense ratios rarely climb above .5%.
We'll also be able to start paying down on the mortgage now. DW wants nothing to do with the finances, so we'll be putting an additional $250 towards principal each month. DW gets her toys when she wants them, and aside from that she doesn't care.
Life couldn't really be any better at this particular point in time. Everything is going great. If I had to find a downside, it's that we still haven't finished the basement. We have the funds to do so, but not the time right now. 3 classes a week and 3 days of work, plus all of DW's medical and the basement takes a back seat. But anyway, life is great.
I love the army - pays for everything hook, line, and sinker. One of my buddies failed his weigh and tape, the commander threatened to chapter him, so his doctor literally referred him to have lipo done, and tricare approved it. He's having lipo done on the army's dime because he's too fat by 1% body fat but still got a 265 on his PT test. Awesome and hilarious at the same time.
This is kinda three posts all in one.
We ended up getting $1938 back from Federal, $39 from Missouri, and $87 from California for a total of $2064. You can take the standard deduction and still get $1,000 more deducted for property taxes. Plus the $1,200 credit for our Roth.
Had I known about it sooner, we would have put more money into our Roth in order to get the full $2,000 possible. Live and learn. We'll do that for next year after the EF is finished.
I had my with-holdings set to only have $20 or so a month come out. My bonus gets taxed at 31% either way though, so they take $620 of $2000. I'll ask finance if there is a way to change this when I go adjust my with-holdings so I pay absolutely no federal tax.
Next year since standard deduction and personal exemption don't change, we will have $11,400 standard deduction + $1,000 for property taxes. Personal exemptions of $7,300. Comes out to deductions of $18,800. $34,000 - $18,800 = $15,200. So if you tax that at 10%, it's $1,520. Add in the $500 for the home buyer credit, and our tax liability will be $2,020.
Now add up the Making Work Pay credit and the Roth matching credit, you get $2,800. Subtract our tax liability, and you get a return of $780 even if we pay absolutely nothing in Federal or State taxes as long as we contribute at least $2,000 each into our Roths.
So it sounds like on Friday I will be making a trip to finance on post to have my with-holdings changed so I pay no federal income tax. It's not often you can say that neither yourself or your spouse will pay state or federal income taxes and still get a return.
I don't know what the basement will cost to have finished, but we'll take the $2,064 plus my $60 in Lowes gift cards from Christmas and give her the old college try. I think we'll come out right about spot on.
Floor tile: $75 for supplies. $250 for labor.
Carpet: Cost plus installation: $400.
Sink, toilet, mirror, and light: $600
Installation: Free (cousins a plumber)
Paint and trim: $250. Installation: DIY.
We didn't budget for a tax return because I didn't think we would have one. Our EF will be done this year even without it. I didn't budget for my bonus in April either, which is good because now I can go to my sisters wedding in April, which will cost $500 to go to, and leave $1500 if I can adjust our with-holdings.
We would take the $1,500 left over and use $750 of that to furnish the basement, and the other $750 towards our Roths to be able to take advantage of the Roth credit on our taxes next year.
2010 Financial Goals
So my goals for 2010 should be done without a hitch.
1. $10,000 in big EF. We put $450 on the first and $385 on the fifteenth of every month. There was $450 to start the year from 2009. We should end 2010 with right around $10,500 in there when you figure in interest.
2. Finish and furnish basement. With our tax return, we should be able to finish it, and my bonus, furnish it.
3. Have enough in savings to pay for our costs for DW's transplant w.o a pay advance or using the EF. The other half of my bonus, plus cutting cable ($106/mo) and our house cleaner ($150/mo) for the time we'll be in Minnesota will be able to cover all of this. We should actually come out around $2,000 ahead after it's all said and done when you consider that we'll be cutting our home costs. That will also go towards our Roths.
4. Double contributions to Roths. We put $100 a month each into our Roths. Figure in the $750 from my bonus and $2,000 from savings when we go to Minnesota, and we should be able to more than make up an additional $2,400. It would be in lump sums as opposed to monthly allotments, but it still accomplishes the goal.
5. Purchase investment property. We close in a week or two on a 7.34 acre piece we bought for $12,500 plus roughly $600 in closing costs. We put it on a 5 year note. Don't know the rate yet - the real estate contract said 5% but the banker estimated 8%, so we'll have to wait and see. Either way, the intention is to pay it off over 18 months, not 5 years. It's as much to raise our credit scores with an installment loan as it is to have investment acreage.
6. Get promoted. Blasted points. I hate you points, all 798 of you. Just because my 620 doesn't measure up, doesn't mean you should win. Fall points, I beg of you. Let me make that extra $300 a month.
Filing our taxes today. Tried to the taxact thing and it doesn't make sense to me. It said a refund of right around $1,500. We paid a combined $1550+/- in Federal taxes, and $120 in state taxes. Our taxable income was $36,000 before deductions. Property taxes ($1000), Making work pay ($400), and the Roth credit ($1,200) raised our deductions by $2,600. So standard deduction of $11,400 and personal exemptions of $7,300 comes to $18,700. Plus $2,600. That gives us deductions of $21,300. Makes our taxable income $14,700. So even with a 10% tax bracket, we should pay $1,470 in federal taxes. The new military spouse law makes it that neither one of us had to pay state taxes. So even if all this is accurate and right as to how the tax code works, which I doubt, we should only get a $200 return.
So I opted to make an appointment and have them filed on post today. I've done this the last few years as my first option and never worried about it, so I'll do it this year again. My question is if our return is almost the same as what we paid in federal taxes, should we just not pay any federal taxes at all? But then what happens if I end up owing next year and I have to pay penalties and interest? Irritating.
Anyway, the good news. This weekend we won 4 dugout box seats to a Royals game. My father-in-law is a huge sports fan, especially anything Missouri for college, and Chiefs/Royals. So he'll like it. As if I had a choice in who we take - soon as we won, my wife was on the phone with her Mom telling her about it. Not that I mind going with my in-laws, just that it would have been nice to talk about it. But hey, it happens.
And the highlight of my week. I ran a 14:22 two mile in the gym yesterday. I've never run that fast before in my life. To do that on my first day back to work after having only nominally worked out for the last 5 months was amazing. I don't know who was more surprised, me or my boss. But I only work M-W-F 7a-3p. Pretty sweet stuff.
But I need to go get DW from dialysis and go file our taxes. If we do get the $1500 my basement will get finished in the week or two after we get it.
Yes, I know the tax return should go into our Emergency Fund. But DW and I are both sick of having a half finished basement that can't be used for anything. I can finish it and move my weights back down there and have my cable and DVD's back to watch while I work out. Cross your fingers.
So we won't be starting DW's drug treatment until this summer. The Doctor heading the treatment is rewriting the protocol, and they won't be accepting any new cases for the study until June 1st at the earliest. So I go back to work on Monday for the first time since August 24th. It was a nice break, but I've been ready to go back to work since before Christmas. I get 6 months off this fall too with the transplant and drugs, so anyway...
My Platoon SGT wants me to go talk to re-enlistment this week. Not real high on that idea, but I will anyway. To re-up right now can't give me anything I don't already have. I want to stay at Ft. Leavenworth - so re-enlisting for stabilization or choice of duty station doesn't make sense since I can't be moved without re-enlisting and I don't have to re-enlist until next August. So 1 year stabilization doesn't give me anything extra.
The only incentive to re-enlist now would be a cash bonus. But to do that, I fore go the $2,000 I have coming in May and the other $2,000 I have coming next May. So whatever amount I re-up for, I would have to subtract $4,000 from that to see what "extra" I'm really getting. It will take at least $14,000 to get me to re-up now as opposed to later. I was told that I'll be guaranteed to stay here until the transplant is done and DW can take care of herself again either way, which is about as much as I would get with a 1 year stabilization if I do re-up in August '11. I'd want that in writing though. If I can see a spare $10K then yeah, otherwise, I'll wait until it benefits me the most. I really don't see that much cash being thrown my way, but hey. Everyone can dream.
Going back to work will be a bit different. Both of the guys I've been working with for the past 2 years on a daily basis are leaving in the next couple weeks, and I get two new guys to train. It's not that the new guys don't know their jobs - it's that I'm lower ranking than both of them, but I've been working in the same section for 4 years and they are both new to the section. The guys I was with treated me as an equal because I did as much work as them and pulled my own. I can't expect the same from these new guys right off the bat, but I'm sure it won't take too long. I'm due a promotion from November anyway, but I couldn't get it until I came back to work. So we'll see what happens. I pretty much just don't want to be pushed around at work, which tends to happen with new bosses.
Nothing else really going on. Close on our land purchase in the next few weeks I suppose. Still waiting on DW's W-2's so we can file our taxes. Kind of nervous about filing because I don't know if I lowered our with-holdings too much and we'll owe. California owes me $87, so that can go towards whatever Federal I owe, if any.
Oh - almost forgot. We got $567.44 back on my trip to Minnesota as a reimbursement. Cost was about $240, so we came out way ahead. And we got back around $440 as excess in our escrow account. That all went into savings, which put it back up to where it needed to be. Now whatever extra we get can start going into finishing up our currently half-way finished basement. That's my goal now - to finish the basement before we go to Minnesota for DW's drug treatments for her transplant.
Going to a church dinner/silent auction that's a youth fundraiser tonight with a bunch of friends. Heh - it's amusing to me that it's at a Catholic church - and I've never been to a Catholic church before - and that at the dinner they are selling $1 a bottle beer. It's very ironic to me that a church is selling beer at a youth fundraiser. But anyway, off to work-out. Lost 10 lbs since Wednesday getting back in shape. I had put on about 25lbs since I stopped working, so now I just have another 15 to go. Give it 2 weeks tops. Lots of oatmeal, protein shakes, and cardio.
So the drive home wasn't bad. Dense fog and rain through southern MN and nothing but light rain and a lot of wind in IA. Made it in 6 hours, which is the average.
So I'm trying to figure out how we're going to cover at home expenses and medical travel costs (food, hotels, gas) while we're gone for DW's drug treatment. Right now we have enough in savings to just pull a bit out for a weeks long trip, and then get it reimbursed by my job when I get back. DW's drug treatment is 4 months long. We go to Mayo for 3 weeks, then home a week, and do that 4 times. Plus another month for the transplant and recovery. So we need to be able to cover 3 weeks worth of expenses there at a shot, then get it reimbursed by my job. We would basically be using the same money each time, because it would be reimbursed by the time we went back to Minnesota.
The hotel is $580 for a month, or $225 for a week, so it makes more sense to just get the a hotel room for a month at a time. It has a kitchenette in it - microwave, stove top, and small fridge. So we could reasonably go to the store and get groceries and cook as opposed to getting fat eating out all the time. So I would say our food budget wouldn't change much - maybe be $350 a month instead of $250. Plus gas is about 25 cents a gallon higher there, and we use about 40 miles a day there round trip on the hotel. So that raises our gas budget from $150 a month to about $250 when you figure in the $80 in gas it takes to get there and back. Total monthly costs go up by roughly $780 a month.
We currently pay $150 a month on our maid service - yes I know, it's a lot for something we can do ourselves. You have no idea how much it has improved our marriage to have it, because DW and I would fight all weekend when we did the house cleaning. It's money well spent, IMO. Anyway, we will cancel that for the time we are in Mayo, so for 5 months.
That makes our cost increase go from $780ish to about $530ish. We have that in savings without touching the EF. So would it be a good idea to just pull out $750 from savings and use that, giving us $220 in wiggle room? Then have it reimbursed each month, and keep using it until the transplant is done, at which time it will be reimbursed into the savings account.
The other thing is that my jobs mileage rate is 50 cents a mile. So I get $370 a trip for gas. They don't cover the gas while we're there - they cover the travel mileage to get there and back. So if we spend $250 a month in gas, and get everything else reimbursed, we come out ahead $120 a month. Over the course of 5 months of that, and 5 trips, we come out ahead $600. So really, we could be putting that extra $120 a month back into the savings account each month.
Does this make sense to everybody as far as a financial plan to cover the expenses of the trip? We could do this without changing any of our budget each month - just by taking $750 out of simple savings and having it reimbursed.
The alternative is to get a pay advance, which completely screws up the budget. I get my bonus in May, which is half way through the drug treatment. I just don't want to turn down the pay advance and go off half cocked in doing so. I think I've looked at everything here, but I'm just not certain. We have $2000 in our EF right now and are putting an extra $835 into it each month. We could just stop doing that instead of getting a pay advance if need be.
Am I overlooking anything?
Everything seems to have gone good at Mayo. Trip up was a bit scary, saw 17 vehicles wrecked along the way in Iowa, including an over-turned semi.
All the tests came back fine, nothing to worry about. Get the final vote on Wednesday, and should find out when DW starts her drug treatments then as well.
So now I get to attempt the 6 hour drive back to Kansas City in this eventful weather. Made it up in one piece, should make it back the same. Wish me luck.
So a few days ago I made an offer on a small piece of land, nothing much - 7.34 acres. Land around here usually goes for a minimum of $3,000 an acre and this was listed for $13,500. I got it for $12,500 plus closing costs, and the seller pays the survey fees. Comes out to about $13,100 for me. I did finance it over 5 years at 6%. I figure I will pay it off in 12-18 months. Land right down the street from it is listed at $44,500 for 5 acres, same condition. I was thinking of just re-listing it, but have decided to hang onto it as a hedge against inflation. I suspect we will see some hyperinflation over the next ten to fifteen years. Land will always match inflation.
Got quite upset at Tricare. I was told to get medicare Pt. B by our local office, which we did. Now, a case manager from Tricare called us and told me to cancel the medicare Pt. B, because I'll be responsible for the $155 a month premiums. I had done all the work with social security to get Pt. B, only to have to go cancel it. Irritates me.
My life has been fighting insurance agents lately. Not fun, but I guess it's productive.
Kinda disappointing to get paid and then have almost all the money leave the account just as fast as it came in. We started doing an ACH payment to our money market for $835 a month so that the EF actually gets done this year. DW doesn't like it, but she realizes we have to have it done before we adopt. This way, it will be done by the time she's back to work, and we can then save her paychecks to pay for the adoption.
Getting ready to file taxes, as are most of us. Expect in the ball park of $500 back, tops. Probably much less, but we'll wait and see.
Nothing too much else going on. Leave for Minnesota on Wednesday morning, get back late Friday night if everything goes as planned.
So DW and I are off to the Social Security office when she finishes dialysis. Fun stuff. We're getting her put on Medicare Part B. She supposedly just has to sign one form since she already has Part A and Disability. We shall see.
So it has been a few months since I've posted on here. Really, not a lot has changed. The army has placed me in a TDY (temporary duty) status indefinitely pending my wife's transplant. This means I still get all pay and allowances, but don't go to work. I do my PT test every 6 months, and submit leaves and passes as needed for medical appointments, but other than that my full time job is taking care of my wife. It's a pretty sweet deal.
To that end, DW is doing pretty good. She gets sick from time to time still, but much improved. She has a blood clot in her fistula, which she has an appointment today for to have it looked at again.
I go to Mayo on January 20th to have my donor evaluation physical to give DW my kidney. Mayo is going to proceed with a drug called Velcade that is used in bone cancer as a form of pill induced chemo. This is supposed to kill DW's immune system so she won't reject my kidney. It's a wonder drug for organ donation because it takes two otherwise incompatible people and gives them the same survivability rate as a good match. All that is required now is blood type matching. It takes 16 weeks on this drug and it's not a good option for all people, because the patient needs a caretaker for those 16 weeks, so we both would be out of work if I had a normal job. Most people cannot afford that, much less to do that and cover lodging and expenses while away from home. The army foots the bill and then some for all of this.
I'm almost done submitting a packet to the Surgeon General to have signed off on to give DW my kidney. The military has to have approval from the Surgeon General to allow active duty organ donation.
Not too much else going on. Had an awesome Christmas. First time my sisters and I were all at home together with my Grandma in 10 years. Grandma teared up, which is a lot for a roughneck from the foothills of Appalachia. My little sister managed to get Christmas R&R from Afghanistan in order to make it happen. She had to fly for 3 days to get home.
We're strongly considering my departure from the military. While it's been a good ride, I don't think it's what I want to do. I would much prefer to be a lawyer and go into politics. It's a difficult decision though because while Doctors and Lawyers often make a great deal of money, they sacrifice their family time in order to do so. That in itself is a major factor in my wanting to get out of the military.
The retirement options of the military are great, and if I do another 14 years from the time I finish this contract, I get out when I'm 38 with full medical for myself and DW for the rest of our lives and our kids until they graduate high school. It would also pay $38K towards one of our kids college. Difficult to pass up. The problem with this is that the second I sign re-enlistment papers I come down on orders. Right now I'm what's called "fenced in". Meaning I'm a first term soldier with 3 or more duty stations, so the army cannot move me again until I re-up. However, I also have just shy of 18 months of dwell time, which is the magic number for orders. I would be sent back to Cuba without doubt.
DW doesn't care which I choose. The money is quite good in the military, considering the pension with disability. I'll also qualify for veterans disability because of giving DW my kidney, chronic problems with my knees, and the fact that I'm being referred for guess what? A hearing aide at 22 years old. Gotta love the army. The doc says I'm so deaf, I probably wouldn't hear a shell casing hit the ground or concertina wire being cut. That makes me feel safe.
We also filed a lawsuit against the hospital that messed up everything with DW, causing the open heart surgery, cutting the wrong vein and not fixing it, etc. The biggest reason is that they keep sending us a bill for $10,000 and our insurance won't pay it, because it was the hospitals mistake that caused the surgery that resulted in the bill. Neither will we. And they won't agree to eat the money. The bill is for the open heart surgery which is a direct result of their mistake. I'm not after any money on it, just to make the bills go away and the collections be taken off our credit report. The lawyer filed suit for $250,000 plus all medical expenses, past and future, relating to the claim. The statutory cap in Kansas on all medical malpractice suites is $250,000. The lawyer said she has to file in that amount just to be able to meet her costs on a contigency basis. If we win the $250K, she gets 33% of it, which is $82,500. She said it costs her between $80K and $100K to do a case like this. Completely stupid that it costs the lawyer ten times the amount we're trying to avoid paying. I don't care as long as we don't have to pay for the hospitals mistake. It's a matter of principle to me.
It's been a bad year financially because of all the stuff with DW. As much as the army pays, we still have a lot of out of pocket stuff. At one point we had an $8,000 cushion. Right now, it's about $1,600. Slowly building it back up. Should have around a $500 tax return between me and DW. The army will give us mileage of $376 when I go to Mayo in a couple weeks, and it only costs $80 in gas. That will help out.
We're putting away $835 a month into a money market as an ACH payment trying to get the EF back. DW's disability is $441, which account for half of it. We also put $200 a month into a Roth, which isn't much, but better than nothing. If I do re-up, my bonus will be $16,000. We could put that in the EF and then pay the $835 a month into the Roth, and switch the Roth's meager $200 a month to the EF. Slowly build the savings, while quickly working on retirement. If we do win the lawsuit and get all we ask for, it would pay off the mortgage and leave at least $25,000 extra. That's not the goal by any means, but if it happens, I'm not going to balk. The lawsuit takes 2 years on average, so we're by no means counting our eggs. Heck, we may end up in court on collections with the hospital before our lawsuit is done. Wouldn't that be our luck.
But it's been a blessed year all in all. DW made it through the worst of it. This time next year she will be back to work fully recovered if everything goes well. That's the plan my friends. 8 or 9 more months of this kidney trouble, then I'll be back to work, and DW will be back in about 10 months if all goes to plan.
I'll most likely end up re-enlisting simply for the fact that I can retire when I'm 38 and never have to work again in my life if I don't want to. Kinda got the gleam in my eye to retire on $60,000 a year and not owing one red cent to anyone and having health care paid for for life. DW and I could do anything we wanted to. Hard to knock.
So I went to trim some shooting lanes at my deer stand and a 10pt buck and a doe walked up on me and stood watching for a few minutes until they winded me. It was a nice 10pt too, when he ran away it was like watching a bush running because he took so many leaves off the low trees.
Yesterday I got the deck sanded down and the new spindles put up. Today I'm staining the deck, staining our fence, and the neighbors fence. Then getting a big piece of poster board and making a stencil of our bay window dormer to get a blind made for it. Then I'm going to fill in the holes under the deck my dog has dug.
Tomorrow I'm going to go see if I can get this 10pt buck before I have to take DW to dialysis. That would make my week. One of the guys I work with got a button buck yesterday in Kansas, which counts as a doe.
When I was working on our deck yesterday the neighbors kids came over to help DW make some brownies. They are for our other neighbor, cause we have to take their plate back they gave us apple cake on, so we made brownies in return. Anyway, DW made just enough to give away, not expecting the kids. So today the kids are coming over again and DW is making brownies for them. She makes it all from scratch, none of the mix in a box stuff.
And finally, DW and I aren't a match at all for a kidney transplant. Mayo said she would have to do treatments every other day for 3 months there and even then it wouldn't be for sure. So we need to find a B blood type, or an O without kids. Good times. But we are on the paired kidney exchange at Mayo, and working to get on Barnes Jewish in St. Louis. DW has about 14 months on the list in Kansas City, and you can move your time on the list around, so we're moving her 14 months to Mayo and restarting her time on the list in Kansas City. Good times. We have to go up to Mayo sometime, find out today, in order to get DW on the active list for up there.
That's about it. Off to feed the dog and get started on my list for the day.
So I got the entry painted, took about 5 hours to do it all right. Also got out the house jack and lifted up the corner of our deck that was sinking. Also went to the lumber yard and ordered new spindles for the deck since they didn't have any in. I'll get those on Friday, so I'll be able to put those on, sand, stain and seal the deck over the course of the next week. I'll borrow a hand held belt sander to sand the deck down, and I have a paint sprayer to stain with.
Also mowed my yard, and took out the dying annual pot flowers. Nothing left to do as far as working on the house except the deck this week.
Tomorrow will be nice to get the deer stuff finally around and done. Maybe I'll get some deer hunting in later this week and put one in the freezer. Could use the meet. You can kill all the doe you want in Missouri for $7 a tag, good stuff.
Mayo doesn't have the labs finished yet. First we were supposed to know Friday. Then today. Now tomorrow. We'll find out eventually. I hope they can work with us. Would be a big help.
I'm not losing any weight working out, but then again when you're 6'4" 230, I don't really expect to lose too much weight as I do just get leaner and put on some bulk. Didn't get my workout in yet today, so it will be a late night when I get home. Usually do about 45 minutes of solid cardio and half an hour of weights each day, and it's helping. DW notices anyway, and that's what counts. That and my PT test in 3 weeks.
But I'm off to take a shower and go play cards.
So we went to DW Aunts house Saturday for dinner. Went fishing for a while in their pond, caught some bass, then went in and had steak and potatoes for dinner. Good times. They are letting me bow hunt there too, which is nice, because it's uber difficult to find good hunting land in Missouri that people will let you hunt. Already a tree stand there too so I don't need to buy one.
Sunday, we went to church for the first time together in a long long time - it was only the second time since Feb 08 when we got married. We didn't fight about it either. It meets us both about halfway, and our friends go there, so it's a good compromise. Good times.
Last night we had company for dinner, and that was good. Got to hang out with people relatively our own age for about 6 hours. We're going with them to a ren fair next weekend - DW wants the deep fried cheese cake. Can you say heart attack on a stick?
Today, I'm going to try and finally get this dang entry painted - it's a pain to tape the ceiling off because it's on a stairwell and 30 feet up. Then I'm mowing, and going to play cards tonight. Tomorrow, I'm going to pick up a free old recliner to put in our basement. It's still good and functional, just outdated upholstry. Also getting my deer stand together and planting some winter wheat. That should get me to Wednesday.
But the big thing will be later today when I call Mayo back and should find out if they can work with us on DW's kidney transplant. We'll hope.
Had written a check for $600 and mistakenly put it in the check book twice, so we had $600 more than we thought.
We've been wanting a new TV and found a decent one at a good price, so we bought it. A 46" LCD at wally world that had been the display TV for $730 plus tax. The new ones are $1158 plus tax. Figure we saved about $475. Hadn't been planning to get one until the super bowl, but with that kind of deal it was hard to pass up. DW was more excited about it than I was.
So we took the old TV from the living room and put it in the basement. It's a nice little home gym down there now with the TV and an old recliner and my computer. Just need to get an area rug to keep our feet warm off the concrete.
Been meaning to get the basement finished, but it's so expensive to have it done and I don't have the practical knowledge to do more than hang the dry wall, which was done when we bought the house. My next door neighbor is a boiler maker and work gets slow for him in the winter, so he's going to help me as a side job. Extra money in his pocket, and a finished basement for me for about half the price of a contractor. Works out good for both of us.
Today I'm painting the entrance way and taking DW out for a date night for the first time since she's been home from Mayo. She wants to see some movie that comes out tonight that looks pretty stupid, but I want to take her out, so we're seeing Zombieland - the only one that looks like it has the potential to be worth matinee price - and then going to Red Lobster. She loves the salmon there, and she needs the protein. There are cheaper ways to get protein, but it's her excuse for going to a pricey restaurant. I like to spoil her.
DW keeps getting better. She actually walked in wally world yesterday instead of using the wheel chair cart. More because there wasn't a wheel chair cart then because she wanted to. But it's progress. Anyway, that's about it for now. Won't post again until Monday most likely. Have plans for tomorrow and Sunday.
So I went to bounce my checkbook off our online account just to make sure we're in the ballpark after everything we've been doing lately, and there is about $1,000 more in checking than we have in the checkbook. I can't for the life of me figure it out, so I'll just let it be for a while and see if I forgot to write something down somewhere. At least it's $1,000 to much and not too little.
I'm painting one of the spare bedrooms today while DW is at dialysis. Gives me something productive to do.
I sprained my thumb doing something, I don't know what, but it hurts. Oh well. Small potatoes.
Have to call and make DW's appointments ourselves, because apparently the referral office at our local doctor won't. Stupid referral people. That's my day. Not much.
So I went to drive my car to the auto parts store to buy some coils and have my uncle help fix it, and it didn't misfire. It has been running just fine now. Which makes me wonder if the guy was right that the coils did just have water in them, because it sat in the garage for over a month without being ran. Anyway, that's $475 I didn't end up having to spend.
I did buy an elliptical for the basement, and a weight system. $400 for both, and both are pretty good. Golds gym, same stuff I use at the gym I used to go to. 50% off sales rock. My gym membership was $300 a year, so really instead of renewing my membership and getting one for DW, we end up saving $200 right off the bat. Already paid for itself from that view.
Also got my camo for archery season - $50 for a whole brand new set, wal-mart style. Another sale. This recession thing is nice if you actually have the money to take advantage of all the cheap prices. I did need real camo - I had been wearing old ACU's and a winter jacket in a ground blind with my rifle, but that doesn't work so well for archery. This is the first set I've ever had.
Basically spent the money I saved on the car on stuff for hunting and working out. To me, it's not practical to go out on the running trails in the middle of winter in Missouri. I know the army has us run on post regardless of weather, but I am of the privileged lot that gets to do PT on my own, and this guy isn't going to freeze to go running when I get the same results sitting in my basement watching a movie or a football game using a machine. I'll spend my time freezing in a tree stand hunting for a few hours in the morning and evening.
DW is doing great. We sat outside tonight carving a pumpkin with the neighbors two little girls. They liked scooping the guts out. I know its a little early for jackolanterns, but pumpkins from the local farmers are $5 each, and we like to do the holiday decorations. If this one ruins, we can get another one and carve it too. It's worth it just to spend the time with the neighbors and have some fun.
I'm getting kind of bored not working. There is only so much to do around the house. DW isn't quite to the point of taking care of herself, but she does pretty good. I asked work if I could come back last Friday, and they told me no. So I just call each day and say I'm alive, and that's it.
So next week, the company who delivers DW medical supplies is coming and taking all of the old stuff back. Then I'm taking the wallpaper out of the spare bedroom we've had full of those supplies, and painting that bedroom. I'm also repainting the wall in our entrance. That should get me to Wednesday.
Oh, DW has to have blood drawn Tuesday to find out if Mayo will even consider her for transplant. Fun stuff. If they will, then we will have to go up there again in a week or two for a week of evaluations and to get a transplant scheduled. Yippee. I like Mayo. Pretty efficient place, and not too arrogant. Much less so than the research hospitals around here.
So the AC guy is installing a new outside unit as we speak. Cost me $55, plus the $100 copay earlier. Can't complain about that.
My car is supposed to be dropped off in the morning and done in the afternoon tomorrow. $475 for 2 new coils. That is freakin' ridiculous. The coils themselves cost $60 each. So I'm getting charged about $350 for labor to fix my car. I seriously need to take a mechanics class to learn how to fix these type of things. Would save me so much money over the next 50 years. I'll have to look into that.
DW is doing great. She had her appointment this morning and is getting all of her referrals set up. She is making breakfast for us in the morning, and then we're going to Target and Wal-Mart in the afternoon to get some stuff for around the house and some clothes that fit DW. I'm really surprised by how well she is doing, and very happy about it.
It's nice to finally be getting ahead on things. God is awesome.
So DW got her dialysis done, I got the insurance and bills all taken care of up to this point, and I'm waiting on the call back from the mechanic for an estimate to fix my coils. Also got my expense sheet turned into work, and they are going to reimburse it on top of the grant they already gave me, so that will be nice.
I'll get reimbursed $1470, and give DW's parents $850 of it to help defray their costs. I owe my cousin $600 for the last bit of a huge gun safe I bought from him, so it will finish paying that off.
I live in the middle of a subdivision with lots of little kids coming by my house to play with our dog and cause I'm a friendly neighbor with parents and such, and I don't want the kids to get wandering around, find my hunting stuff, and accidentally get hurt. My cousin had access to this 21 gun safe that is fire rated for 50% off. I told him I could pay him month to month for it, but not all at once. They needed to get rid of it, so he agreed, and I bought it. Normally don't like to do business with family, but it was a good offer, and helps both of us.
Next month we start getting DW's disability checks. The first one will be right around $12,000 because we applied for disability in August and listed her disabled date as May 09. Social Security determined her disabled date to be May 08. So they back pay for a years worth, then it's about $1,000 a month or so. That will be nice to get our emergency fund back and then get our savings account back into shape all in one foul swoop, then her check will cover the mortgage each month, so we can take the extra and put it towards the Roth's and then the mortgage.
I was surprised by how fast the disability got done. It was convenient because we live right next to the district office, and the office manager also happens to be DW's medicare case manager, so she just did the disability paperwork, expedited it, and sent it to the state capitol, who signed off on it, and will start the direct deposit after we fax the last of the paperwork when we get groceries tonight.
So the only thing I still need to do after getting the AC fixed tomorrow and getting DW's appointments all set up, is get my car in the shop sometime tomorrow. Then we'll have everything from the last month all caught up.
So all in all, it's been a pretty productive day.
So DW was discharged on Monday. Spent a total of 8 days at the local hospital prior to transfer plus 21 days at Mayo, for a total of 29 days in a single admission - a new record for DW. I don't know if she's getting better or not - she has more energy at home and is moving around better, but at the same time is having some of the symptoms of what got her in the hospital in the first place. We'll have to wait and see.
In the mean time, our air conditioner is finally getting fixed on Thursday. It's only been broken since August 7th. Anyway...
I still need to get new coils put in my car, but that will probably be a tomorrow job.
Today, I have to go to Tricare. When I got home, there was $26,000 in medical bills with something to the effect of unpaid by insurance in the remarks box. Most of it stems from the hospital screwing up and then billing the insurance to fix the mistake - i.e the open heart surgery, plus a collapsed left innominate vein we were never told about.
We're going to end up suing the hospital over the bills on it. It's the same principle as a mechanic - if they mess up your car, they pay to have it fixed or fix it themselves. This doctor not only didn't fix it right, he lied to us about there being anything wrong with her veins after trying to fix it and not doing it right. And then we were billed for it. Irritates the hell out of me. We're not looking for some multi-million lawsuit - but we also shouldn't be out any money to fix the hospitals mistake. You would make a mechanic fix your car, so why wouldn't you make a hospital fix your spouse? It won't be the same hospital, but the one that made the error should be the one paying for it.
That's about it. Off to drop DW at dialysis and then go to Tricare. Fun day.
As great as Mayo is, I'm a little dissapointed with it. They switch doctors every Monday, which is pretty terrible when it comes to continuity of care. The first doc we had was great - saw him about three times a day and always had updates. The doc we have now, not so much. He sends his med student to see us who is still learning and has never seen a case anywhere close to what my wife is. Annoying. Upon that, he completely disregarded all the work her previous doctors had done, and changed the working diagnosis, ignoring the fact there is brain marrow abnormalities and when we asked him about it, he basically dodged the question. And that was the one and only time we have seen that doctor all week. Highly irritating.
We get a new doctor on Monday though, and hopefully will be able to get some answers. DW has conflicting symptoms. One thing points here, the other says it can't be that. So it's difficult. I thought coming here would be a few days, maybe a week, and be back home. Instead, it's been 11 days, and we're no closer to knowing anything than when we got here.
But this is the best hospital in the world, and has the best doctors. So we're in it for the long haul until we get a diagnosis and a solid treatment plan.
The army has been very supportive of everything. They aren't charging me leave at all, have reassigned me to a local national guard unit until DW is able to go home on her terms, and is paying for room and board in the mean time, on top of my regular pay. I can't ask for much more. We're not out anything financially by being here, which is great. I'm honestly surprised by how efficient my BN has been with this, because traditionally we hear a lot of horror stories from soldiers with their problems. Maybe it's that I know the right people in the right places on a personal level outside of work, but either way, it gives me a lot of faith in it. Makes me almost think about re-enlisting instead of getting out and finishing college. Then I know that what's best for my family is to get my wife healthy while we're active duty, then do what I love and make the money I know I can instead of always moving and never being able to put roots down for my kids.
All in all, we're being taken care of, but I'm dissapointed that we switch doctors every monday. Difficult to get a solid idea of whats going on and when to expect to leave when everyone wants to have their own opinion on it and we don't know anything.
So I'm sitting in the hotel laundry slash breakfast area doing laundry while DW is in dialysis for 4 hours. Fun stuff.
The working diagnosis right now is Post Transplant Lymphoproliferative Disorder - PTLD. Her hospitalist also believes she has CMV with symptoms. And a possible adrenal gland problem because her cortisol levels aren't quite normal and her blood sugar is unstable. She also suffers from severe chronic malnutrition as a result of dialysis combined with her multiple surgeries and a long term untreated disease. So they will place a feeding tube through her nose and into her small intestine that has to be in place for a minimum of 4 to 6 weeks, and up to 6 months. She will be allowed to eat with this, but it's essential to her long term care. She also will be placed in physical therapy and rehab to get strength back because she hasn't be able to walk far on her own. The doctor suggested home heath care with this, but that's to be worked out with the social worker.
DW also had 800cc's total of fluid in her abdomen. She did have that drained out, and it was infected. Vancomayocin did the trick for that. Her bowels will be chronically swollen as a result of the PTLD though, and being a lymph disorder, it's unknown the extent of the disease.
The PTLD is a form of lymphoma and is treated with chemo. Need to talk to a hemotologist for more info on the disease - the doc said it's a very rare and very nasty disease to have. The only way they've been able to diagnose it at all so far is because her bone marrow showed strong abnormalities in her skull during a brain MRI. We're waiting on biopsies to confirm all of these so called working diagnosis. DW also has a colonoscopy later this week to kind of get a good look at everything.
So while the diagnosis isn't great, we at least have a good idea of what's going on with her. Better than no answers at all. And they have been very informative here and when we have concerns, most of the time the doctors have accomodated them. Like having so many drugs in her she didn't know what state or hospital she was in, or that she had just been given meds. So that got stopped, and she's coherent now.
We still don't know much about the treatment and everything that needs to happen, but we're in the ball park and are working on a game plan, which is a far cry better than where we were. Mayo has been good for us so far, and is a pretty impressive hospital all in all. That's to be expected given it's reputation tho.
One other nice thing is that my BN CSM called me personally and said they won't be charging me leave for being up here. That makes me happy.
So my local Tricare rep is a bit ignorant. I say that because she went ahead and told me I had close to $1M in unpaid bills for two days, then when I asked for paperwork on it, she went to get the reg to show that I needed Medicare Pt. B despite me never having been told that, so she got out the reg, and it says in bold verbatim "Medicare Pt. B is NOT required for Active Duty"... The woman looks at me with a stupid look on her face, and says something must be wrong because she's always been told Pt. B is a must. Wrong. She had to call her boss at a different post and get clarification, and her boss dug into my file, and low and behold, I owe nothing. I still have to appeal the $8,419 bill and I just got two $60 bills in the mail to appeal, but it's a far cry better than $1M.
DW isn't getting any better, worse actually. I got the docs to finally do an abdominal ultrasound to find out why she's seeping fluid a month later, and there is fluid, and it is infected, and her immune system is so compromised she cant mount a fever. And her blood pressure is unstable, but high, like 145/100 is the best it's been in a week. Usually around 160/120 as an average, with a pulse around 100 bpm. So we leave for the Mayo Clinic in Minnesota in the morning. Fun stuff. Burning up leave like it's going out of style, but that's what it's there for. I get reimbursed for travel and lodging anyway tho.
So we're getting better. My car still needs new coils, and my house AC still needs fixed, but one thing at a time. We have 2 cars, and we're living at the hospital at the time, so those are back burner issues. We'll make it through alright, so long as Mayo can get her healthy and it's not terminal. Lets pray.
So I suppose this will be the last update for a while. I'm leaving in 9 hours for a 400 mile trip to Minnesota. God Bless.
No fluid around the heart, but it's making some really strange sounds that are unexplained. Working on figuring that out. 85% vein stenosis causing the blockage in her chest. Pool of fluid in her stomach where her kidney was is becoming infected. Diarrhea and vomiting all last night, despite meds. On an TNP IV feeding tube, again. At dialysis right now.
Investigating Tricare bills, found that they haven't paid anything since June 2008 and never told us. In order for the bills to be covered, Social Security has to get her put on Medicair Pt. B. Tricare has her as being on Pt. A since June of 06, Social Security has her as being on Pt. A since 94. I'm going to get stuck with past premiums to get her up to date on Pt. B, but Social Security can only go back to August of 08, a year. Problem is, the bills go back 2 months before then. So guess who is going to be left on the hook for that? Well, I'm going to write a letter to my congressmen and get my Battalion CSM in Tricare's office with me. My platoon sgt went and talked to them the other day, but there wasn't much they could do. A BN CSM can go much higher than a SFC. If I get stuck with the past premiums, it's going to an AER grant. I can't believe it's this much of a mess, and not one of the hospitals complained about it yet. Her hospital said they have been billing tricare, it getting kicked back, so they turn around and bill Medicair Pt. B, and it gets accepted. Makes no sense since Social Security has her as not being on Medicair Pt. B, and Tricare is trying to bill me for the bills they get and kick back. A huge bloody mess. And the government wants to run our nations health care? Are you kidding me?
Furthermore, this completely removes all incentive for me to not take a compassionate discharge. The only reason I've turned down the offers of it thus far is because I thought Tricare was paying the thousands of dollars in medical bills I now find out I'm on the hook for. When they do pay them, it's not Tricare paying for them, its Medicair Pt. B paying them, and Tricare paying the premiums. But they won't pay the past premiums and penalties, and the current premium is only $113 a month for my DW, so that's about the same as a high utility payment. I might as well get out and do what I want to do with my life as opposed to be put in harms way when Tricare won't even take care of it's own.
If I end up getting charged anything for this in the end, you better believe it's going to be on like donkey kong between me and DW's tricare case manager. That woman told us Pt. B was not an issue in August of 08, when it could have been back dated to the day we got married then. Really frustrated. How do you let unpaid bills go a year and not tell the beneficiary there might be problems with the account? Let alone that I talk to Tricare at least one a month about bills. And how does tricare and social security's records - both government entities - show different dates for Pt. A? What? Huge mess.
But at least there is no fluid in her heart. And Disability is expediting her payments, and backdating the application to May of 08, so she should see a $11,844 check for that if all goes well. This would cover the past premiums on Medicair, but that's not the point. So effing frustrating that I'm dealing with my wife in deteriorating health and the insurance that's been keeping me in the army, really isn't doing jack but paying $113 a month. To me, that's like telling me I've been staying in for an extra $113 a month when I could have been going to college for free this whole time and working part time. Afterall, the GI bill covers my mortgage while I'm a full time student.
So once we get this insurance crap worked out, and the disability payments start, I think I might take up that compassionate discharge. I've done my 4 yrs. I would be able to finish college full time, have my mortgage paid by the army thru the GI Bill as long as I am a full time student, and have DW's disability checks. That's without either one of us working. Our income would drop $1,000 a month, and I could work part time to make up that difference until I finish college. I'm so pissed off about all of this bullshit right now.
Creditcardfree, any advice on this being a military spouse?
So DW had some preliminary tests run yesterday that were indicative of fluid around her heart. Tomorrow they will run a pretty solid battery of tests to see what is and isn't affecting her fluid accumulation. They don't know how to treat the heart fluid yet, because she doesn't have kidneys, so no way to flush it out. There has been talk of doing dialysis more often and seeing if that helps, but it hasn't seemed to yet. The cardiologist told us they will do what they can, but they don't know if there is much they can do for her. Ima ask for her to be transferred to a better hospital if they tell us there is nothing to be done. So we're just waiting for a diagnosis and a prognosis on it. Shit sucks.
So I took DW to the hospital to get her staples out today. The doc only took about half out, because there is apparently an unknown pool of fluid in her abdomen where her kidney used to be, which is highly unusual. So guess what, we get more tests to figure that out.
We asked him about her signs and symptoms related to her swelling, and he did everything in his power, but to no avail, as it is not surgery related, and he is a general surgeon. He called the nephrologist (kidney doc) but he couldn't admit her for insurance reasons. So tomorrow, we go to dialysis, and chew them out until we see her primary nephrologist, who can admit her, and then get a direct transfer to the research hospital that the insurance won't cover unless admitted through the ER or a direct transfer. Yeap. That's us tomorrow. And then I go to work tomorrow night. Yae.
But on the good side, my car is alright. The mechanic said that when they power washed the engine before giving it back, they must have gotten some water in the coils, which will make it misfire until the moisture is burnt out. Well, it stopped misfiring right as I pulled into the shop. Stupid cars. But at least I dodged the bullet of having to pay to have 2 new coils put in.
On the other downside, just as I pulled my car back in, I opened the mail. To a $8,419 medical bill. Tricare approved the surgeon, but not his two assistants. So I have 90 days to appeal, but the hospital has to file the appeal on my behalf because they have to provide supporting med records. I told my boss, who in turn told the SGM, who happens to be his drinking buddy, so they want a copy of the bill tomorrow. At least that will get taken care of. I'm thinking AER will probably give us a grant for it if Tricare denies the appeal and Medicair won't pick it up. I just can't kick out $8,419 after getting the AC fixed, car deductable, etc. So it's off to bed for me. I just talked to DW, and her eye is so swollen it's seaping fluid out from the tear ducts. Nasty. Definately getting admitted tomorrow.
So the last few weeks haven't been so hot. I went on leave, which was fun. Really enjoyed myself. But on the way there, I hit a mule deer in Nevada. $1000 deductable. I got home, and find my AC unit froze up when we turned it back on. Thank God we had the insurance on appliances that the realtor baught us. Only $155 copay. I picked my car up from the shop friday, and the engine took a dump the next morning. Fun.
On the health front, DW is getting progressively, and quickly, worse. She had her only kidney removed on the 5th, but has 35 staples as a result. Also had to have the artery connecting the kidney replaced an artificial one.
She has since developed severe pitting edema - swelling that leaves deep indentations when you put pressure on it - in her legs, face, left arm up to the shoulder, and her chest. She at times has trouble breathing and chest pains. When these first developed we took her to the ER, who essentially told her that since the test results for blood clots and fluid in her chest came back clean, they weren't going to help her, and sent her home. We don't know the direct cause of the swelling, aside from that it is often a side effect of having no kidneys and leads to one of two things: pulmonary edema or congestive heart failure. Her serum albumin is far too low to be considered for a transplant, so we don't have much to look forward to other than praying that we can get her albumin raised up. We've also been having an average of 1 to 2 units of blood transfused a month. Not much we can really do other than hope and pray.
So now she goes tomorrow to get her 35 staples taken out from surgery. She will be allowed to bathe for the first time since July 2nd. It's a much needed emotional boost for her.
So we're not doing so well right now all things considered. Our marriage is stronger than it's ever been, but DW's health is deteriorating, and our finances are dwindling from the car repairs, ac, and unexpected med bills that pop up occasionally when the insurance denies some tests. As much as I don't like Obama, he is accurate in that as much as 80% of the total health bill is for the chronically ill and dying.
We've also applied for disability for DW. She stopped working May 18, and officially quit her job July 18th. We thought she would be able to get back to work before the year disability requires in order to qualify, but it doesn't look that way any more. She's qualified for disability since last June, but we preferred her to work outside the house and have social interaction with friends at work while she could than sit home and collect a check while being depressed about her situation. Any distraction is a good thing for the most part.
DW is dealing with things pretty well. I think she's come to terms with it. Neither one of us can control if she lives or dies aside from her watching her diet to make sure she doesn't have a seizure. So we live life to the fullest, and right now have kinda said to hell with trying to save, because if she doesn't live, we want her to enjoy what time she has left. Afterall, that is the point of saving right? So we have money to live the end of our lives how we want to? We're not going into debt at all, and haven't stopped the Roths, but are only putting enough in savings to replace what we spend out of the EF.
Whatever she wants, she gets. She can't travel, and we never got a honeymoon, so she wants to do that as soon as she's healthy again. We want to believe in our hearts she'll see that, but at the same time have to be realistic that it might not happen. I bought her a new coach purse the other day, and when she's healthy and can go out, we'll get her a new wardrobe since she's lost so much weight even her pajama pants fall down when she walks. She's gone from a size 18 to a size 8 over the last 7 months and has had no exercise involved.
I think the most depressing thing for me is watching her endure the pain she is in. She can't get in or out of a car on her own very often, it's a real rarity when she can. Climbing stairs without help is one thing she prides herself on, though she can't carry anything. She can't bend over to do laundry or dishes anymore, so her house hold chores have been limited to folding clothes and on occasion putting groceries away. She did make a great manicotti for dinner a few nights ago all by herself, which was pretty impressive, though the exertion to do it put her in bed until late the next afternoon.
She usually prides herself on her looks, but lately hasn't tried to take care of herself. Yesterday, I took her by the salon to get her eye brows waxed and she almost cried looking at herself in the mirror because she looks so rough.
Since she gets her staples out tomorrow, I told her one day when she feels up to it that I'd take her for a couples massage and get her a mani/pedi with it. She's been begging me to do a couples massage with her for months. Normally I wouldn't be caught dead in a spa, so I told her no, but I can't deny her anything right now.
All she wants right now is warm blankets, thin crust pepperoni pizza light on the sauce, diet sprite in a can, and the remote. She's on bed rest, and gets sick to talk.
Yesterday was the best day she's had in over a month. We managed to do lunch and a matinee after dialysis. She even ate dinner, which was a first since the nephrectomy. She hadn't had 2 meals in one day since August 4th. Normally she doesn't eat more than about 8 oz of solid food in a day, so for her to have 2 meals and then still be hungry was really good.
Today, not so much. She was still asleep at 11:30 when I called from work to check on her. She's sick again today, and can barely talk. She doesn't sleep very well because it's painful to move - the swelling makes her skin very tender to the touch and when she flops around in her sleep, it wakes her.
We're praying she will make it. She can't have a transplant with transfusions, so she has to have a blood treatment called plasmapheresis done. They will not do that if she is otherwise ineligable for a transplant, which she is if her albumin is below 3.5. It's at 2.0. So we have to work on her albumin first before anything else. And then when it gets to 3.5, we have to maintain that for 6 months. During 5 of those 6 months she would undergo plasmapheresis during dialysis, in which they filter the plasma from her blood and replace most of it with mine, and some with hers after they manually remove the antibodies from her blood. This makes her body slowly acclimate it's immune system to my blood and antibodies, so that when she receives my kidney her body has gotten used to the cells and doesn't reject.
The sixth month would be a transplant. She would receive my kidney in her left abdomen, and have 3 months of recovery before she could try to go back to work, and would still qualify for disability for the first year after a transplant, allowing her to go back to work at her pace instead of out of necessity.
It takes an average of 30 days to raise a point of albumin. So she is looking at, as a best case scenario, 45 days until her albumin is 3.5. Then 5 months of blood treatments. Then a transplant. Then 3 months of recovery. Best case scenario is 10 1/2 months before she's able to be self sufficient and travel again. Worst case, other than death, is congestive heart failure. It's irreversable, and at 25 years old, leaves a pretty bleak outlook on life.
It'll be a tough row to hoe, but we can get through it. Get this albumin up, and we'll be ok. But I'll be damned if it aint hard. Been working on albumin for 2 months and only gone up 0.6 out of a needed 2.1. But progress is progress.