Garage Sale #2

We had some stuff left over from last weekend because apparently people don’t take their dad’s out to garage sales on Father’s Day!! We only had about 6 people show up last Sunday so my mom is going to hold another garage sale at her place June 27-June 29th. If you wanted to donate some stuff but didn’t get a chance to get it together, you have on more chance. Thank you.

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Getting ready for dialysis

Tomorrow we have the appointment with the surgeon who is going to put in the dialysis catheter. We’re not really sure what to expect, but Laura is pretty nervous about it. My guess is that they will schedule the surgery soon.

A couple of weeks ago, our nephrologist, Dr. O,  started weening Laura off some medications. Dr. O said this needed to be done to get Laura ready for dialysis. Laura is completely off of the cyclosporine now and is only taking half the dose of Myfortic that she was on. In another week, she will be completely off of it too. Unfortunately, this is also going to make her kidneys fail faster and we can already see that starting to happen.

On Sunday, Laura woke up with swollen feet and it hasn’t gotten better all week despite taking 100mg of torsemide. If you or I would take this much torsemide, we’d be peeing like a horse all day long, but it barely has any effect on her. She’s also been getting more tired and fatigued more often. Dr. O had told us that this is would be one of the first symptoms of needing dialysis. Further symptoms include loss of appetite and nausea, but luckily she hasn’t experienced those yet.

As I’ve said before, we’ve decided to do peritoneal dialysis, which is dialysis through a tube in her abdomen instead of the more common hemo-dialysis; which is where blood is taken out, cleaned through a machine, and pumped back in. For us, this seems to be the lesser of all evils. Instead of taking 3-4 hours three times a week to go to a dialysis center, it should allow her to continue doing most of her daily routines. I’m sure we’ll still need to make some adjustments to accommodate this new lifestyle.

We’ve read that people generally feel a lot better once they start dialysis and that this is a good thing. However, we’ve got mixed feelings about it. Sure, you can tell us that it will help with the symptoms and that she will feel better, but that also means that we have to face the fact that her kidneys can no longer keep up on their own. I guess we just have to try to think of the glass as half full right?

Please wish us luck. I’ll try to post an update tomorrow.

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Bank of Oklahoma

To make a long story short, anyone can now go to any Bank of Oklahoma and donate to the “Laura Torres Medical Fund Account”. All you have to do is walk in or drive up to the teller tell them you’d like to make a donation to the “Laura Torres Medical Fund Account” and they will take care of the rest. The best part about it is that there are no fees to us or the person making the donation.

Here’s the long story if you’d like to read it.

First, I’m very happy to say that we’ve gotten $1290 in donations on the GivingForward account. Thank you to everyone who has helped out!

This money has been sitting in the GivingForward account waiting for me to put a bank account number in so it can transfer the money over to it. However, I don’t want any of this money touching my personal bank account. It will be used for Laura’s medical expenses and I don’t want there to ever be any doubt how that money was spent. So last week I walked into a Bank of Oklahoma (BOK) to ask about opening an account for the funds that we’ve collected.

The lady there (Tina) was very nice. She explained that they have a special type of account called a “Special Contribution Account” and that it is a non-interest baring account, which is exactly what we want. This type of account allows us to publicly use the Bank of Oklahoma name on anything we do. We’d have permission to share it on the news or on the radio or anything. The only thing about it was that it needed to be approved by upper management before they can open that type of account. We got the approval yesterday and I went to sign the paperwork today. They’ll send us checks and debit cards in a week so we can start using the account.

Thanks again to everyone who had donated and/or shared the link. We really appreciate everything!

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These are real people

I was doing some research tonight and found some interesting information that I’d like to share.

According to the Organ Procurement and Transplantation Network, which is run by the U.S. Department of Health and Human Services, as of tonight, there are a total of 134,161 people registered to receive a transplant in the U.S. 

Of those, 108,393 are waiting for a kidney. The remaining 25,768 people are waiting for another organ like a liver, heart, lung, or pancreas. In Oklahoma, there are 648 people waiting for kidney. 

WaitList_20140614

When you see these statics, many people don’t stop to think that there is a real person behind each of those numbers. I have to admit that I never really gave much thought to these numbers either, but now that we’re waiting to be put on the list, these numbers have a whole new meaning.

Now I think, how many nights have each of these people spent in the hospital? How many of them will be lucky enough to receive an organ? How many of them have children that they are unable to care for because of their illness? How is the families of each of these people coping? How many more people are not on this list because they have no insurance or the financial means to pay for it?

I wonder, do doctors think about this? Do they ever grow attached to a patient they’ve treated or do they detach themselves? Besides organ compatibility, how do they determine who gets the next organ? How do you value the life over another?

It really sucks to think about all of that, but behind each of those numbers, there is a real person with a real story. I only wish that either our health care system or science was good enough to fix them all so no one would have to choose which life is more important.

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First Official Fundraiser

My sister-in-law is kicking off the first official fundraiser for Laura’s kidney transplant. She’s putting together a garage sale next weekend June 13-15 (Friday, Saturday, and Sunday).

GarageSale

If you’d like to get of any “old” stuff you don’t need anymore and would like to donate it to the garage sale, we will gladly come pick it up.

If you know of anyone having a neighborhood garage sale this weekend, ask if they would like to donate anything that doesn’t sell.

We really appreciate your help!

 

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Peritoneal dialysis

We got a call from the surgeon’s office where they are going to do the surgery to get the peritoneal dialysis (PD) tube inserted in Laura.  They want to see us on June 19th. I imagine it’s just for the initial consultation and to explain how it works and what to expect. They’ll probably schedule the surgery soon after that.

The bad thing about PD is that we were reading that many people gain weight because the solution that is used is a sucrose solution and your body absorbs some of it. Some sites say it adds 500 calories to your diet while others say it adds 1200 calories. The other down side is that we’ve read that you are more prone to infections because you basically have an open wound all the time. It’s also not as effective and hemodialysis so you have to do it every day for about 5-6 hours. The good thing is that you could do it at night while you sleep or spread it out during the day.

However, we think the pros outweigh the cons. Since it’s bloodless, Laura doesn’t have to go to a dialysis center 3 times a week and spend three hours there each time. This is the biggest benefit since it would be pretty hard to do with the 4 boys. The two older ones would probably be okay, but not the 1 year old and 4 year old. Another benefit is that Laura can do it herself if she chooses.

Laura is pretty nervous about it it so we’ll see how that goes.

 

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Very frustrated!!

I’d like to apologize in advance because this post is going to be a little long. I’m pretty ticked off and frustrated and I was really hoping not to have to post this.

You may be wondering why I haven’t started a GoFundMe, YouCaring, or some other online donation for Laura. Well, I’m going to go ahead and start one in the next day or two. Those of you that know me well know that it was uncharacteristic of me to not jump on this sooner because you know that I would do anything for Laura and my family. Well, I’d like to explain…

First, the hospital has required us to use a non-profit organization called NFT (National Foundation for Transplants). I asked if we could open our own account or use someone else and they said there were no exceptions. They do not want us doing anything else because “they can’t check our balance to make sure we have the money” and they “have over 500 patients and they don’t have the time to check statements every month to make sure we don’t take out the money.” Come on really? Laura needs a freaking transplant and you’ve told us that a kidney transplant costs $280,000-$300,000 and $8,000-$10,000 a year for the rest of her life, so do you really think I’m going to use that money for anything else?  I don’t need a freaking babysitter. I think I’m old enough to make wise decisions!

Anyway, I looked into them and they seem like a great organization, but once I read their fine print, I did not think they were a good fit for us because they make you sign an agreement that says:

  • I agree that all funds raised in my honor while partnering with NFT will be sent to NFT to be used for the agreed upon purposes as set forth in NFT’s Policies for Assistance.
  • To ensure the integrity of NFT and its community campaigns, any existing bank accounts for the purposes of fundraising must be closed.
  • No other accounts should be opened.
  • No other fundraising organization should be consulted while partnering with NFT without prior consent of NFT.

So if you raised money before using NFT, you have to close those accounts. You can’t open any new accounts and you can’t do any fundraising outside NFT. This money is for Laura’s medical fund anyway. so I guess I’m okay with that. But then comes the stuff I don’t agree with.

  • I have to submit payment/reimbursement requests and wait for them to pay the doctors directly or reimburse me if I paid out of pocket. Why do I have to waste time doing this? I’ve got enough crap to worry about taking care of my wife and kids. Why can’t I just get a credit card that only works for medical expenses??
  • Then the big one (you can click the image below to enlarge it)
    UnapprovedExpenses
  • If Laura gets sick for anything unrelated to the transplant, I won’t be able to touch the money we’ve raised for MEDICAL purposes. IT WILL NOT COVER IT!
  • God forbid, if Laura were to pass, IT WILL NOT COVER FUNERAL EXPENSES.  So what happens to the money? Check the next point…
  •  UnusedMoney
    Yup, they keep it. Isn’t that nice?

So that’s why I don’t want to use them. We’ve been calling our “financial adviser” at Baptist since last Thursday two or three times a day and it always goes to his VM. Oh, and he has a nice message on it that says not to leave more than one message and just “trust that we will call you back”.  So at this point, after not getting a return call for almost a week, I’m fed up. I’m going to do what I think is right and start my own fundraising account. It should be ready in the next couple of days.

If Baptist didn’t have the highest ratings for kidney transplant in Oklahoma, we’d be going somewhere else. It seems like the only thing they are focused on is money rather than the patient’s health. I guess I should have known that from day one when the social worker asked the auditorium “Who wants a new kidney?” and when half the people raised their hand, she said “Good, because that pays for my salary so I’d like to do a few this year.”

The second reason I hadn’t started a fundraiser is because I’ve never really liked to ask for help. I’ve always tried to dig myself out of whatever hole life puts me in on my own. I don’t like to ask for help, not because I’m prideful, but because that’s just how I grew up.

My parents came to the States from Mexico when I was 4 and a half years old. I didn’t know English and neither did they. As I learned English, my parents relied on me rather than me relying on them. I couldn’t ask for help with my homework because my parents couldn’t read English. They made the money, but I wrote the checks. They moved from house to house, but I opened and transferred the utilities. Dad fixed the car, but I asked for the parts at AutoZone. I worked full time while in high school and bought my own clothes; I put myself through college. So I’ve learned to rely on no one but myself since I was about 5-6 years old. That is why it is especially hard to ask for help.

However, I also know that even though it’s hard for me to ask, there are many kind and giving people that would love to help and are just waiting for us to ask for it. We’re asking… Thank you all and please keep us in your prayers.

 

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Thankful…

Today was good, I try to make the best of it.  My brother dropped by, not only did we enjoyed his company, but he also helped me a lot.  Our laundry machine broke and by the looks of it we didn’t think it would come back to life even if we try fixing it. Water was running through the back and got all of the carpet in our closet wet! We had to pull up the carpet. We thought it was one of the little ones peeing lol, but after a while, my husband told me that was way too much water lol!

My mother-in-law kindly gave her laundry machine to us. She said she would buy a new one for herself. It was hard to say yes,we have always been so independent, but with pending medical expenses and four little ones we had to be realistic; we humbly accepted. My brother help me connect the laundry machine so I could finally wash the baskets full of dirty clothes!

I am finally weaning off the cyclosporine. I’m only going to take it once a day for 14 days then I will stop. In preparation for the dialysis, I will be weaned off the other immunosuppressants as well. The transplant doc said that as of right now I would be a poor prognosis for direct transplant so we have to do dialysis.  They want to build my immune system back up to see if the parvo b19 virus goes away. They also said I was malnourished so they think dialysis will help.  It is hard because I will be seeing how my kidneys will slowly die.

My sister showed me a quote by Michael J. Fox that says: “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it”.So that has helped a lot.

This Saturday felt like everything was falling apart. The air conditioner upstairs stopped working, the washing machine was broken, water was draining in the closet among other things going wrong. A friend came by after hearing about our carpet issue and volunteer to help Manny to take the carpet out it was starting to smell bad and then he came with his lawn mower and helped him cut the lawn.  My heart swells with gratitude, as I know we are not alone.  Life can be overwhelming but it is worth living it.

Thank you to all of the people that have kept my family and I in your prayers and positive thoughts.  I am not great at communicating because I’ve always been shy; but my appreciation is immense. A smile from a stranger soothes the soul when your aching. A simple hug from someone that just heard your story and can relate is priceless.

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