Happy 15th Anniversary

15th years ago today, I married the person who was to make me a daddy four times over. We only dated for 6 weeks before we got engaged and then four and a half months later (six months after our first date), we were married. Yea I know, that sounds crazy right?

Don’t get me wrong, I don’t think I’d ever approve if any of my four boys ever did that but for me, it was the best decision of my life. Laura, I don’t know what it was, but I knew we were meant to be together. It just felt right.

Sure, we’ve had our ups and downs. We’ve had a difference of opinions on many different subjects, but that’s just part of being our own individual persons. The awesome thing is that we work through it and never try to take away each other’s individuality. (Even when I’m right. ūüėÄ)

We always work as a team. I guess we’re kind of like JB Weld. Each part on it’s own isn’t very strong, but together, it forms a strong lasting bond. But once you mix the two parts, you have to let it set or it could fall¬†apart. For us, that meant getting to know each other well and trusting each other. Yes,¬†that took some time but we never threw in the towel. We were both always willing to work it out and I think our hard work has paid off. We’ve got that strong JB Weld bond.

I wish you were well and wish we could celebrate this anniversary in Paris or some other far away place, but it just didn’t work out that way. But it doesn’t matter because we have each other and we have our four boys. That’s what really matters. The last year has been very tough. This kidney disease has really tested us, but I think we’ve only grown stronger. As I told you 15 years ago, I will always love you, in sickness and in health. Please remember that no matter what the future brings, you will never be alone and you can always count on me. I love you.


(Thanks for the collage Esme)

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Going on Dialysis

Laura came and picked me up at work and we went to the doctor today. The appointment was at 1:30pm at Baptist Hospital. Just as we feared, it was suggested that we start getting ready for dialysis. Even though we knew this was coming and we tried to prepare for the news, it still hits you like a ton of bricks when you actually hear those words come out of the doctor’s mouth.

“You are the worst case of bad luck I have ever seen.”

Yup, she said it. Dr. O didn’t mean anything bad by that, she just can’t believe that it happened so fast. Everything that could go wrong did. The first medicine they gave Laura that was supposed to help ended up putting her in the hospital for 20 days (six of those in the ICU). Some people with FSGS end up with kidney failure within 10 years. In Laura’s case, she developed collapsing FSGS, the worst variant¬†of FSGS and kidney failure happened within a year.

The next stage is dialysis. Apparently there are several ways to get dialyzed. Hemodialysis is what most of us are familiar with. This is where you get stuck with a needle and have to sit there for 3 hours while they cleanse your blood with a machine.

Then there is peritoneal dialysis. I didn’t know this even existed. Basically they stick a permanent tube in your abdomen and use it to put fluid in and take waste fluid out.

Hemodialysis requires them to create a fistula. This is where they graft a vein to an artery to not only give it aortic pressure, but also make it grow and make it stronger and suitable for a dialysis needle. Otherwise the vein would just collapse. Hemodialysis would require 6 weeks of training for both Laura and I. They teach you how to stick her with the needle. How to work and clean the machine and how to handle any emergency situations.

There really isn’t a good option, no matter how you slice it. ¬†However, with four boys, PD¬†may be the easiest for Laura because she could even do it herself if she needed to.

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Dialysis Anxiety

Last week Laura got some lab results and as she posted here¬†it’s all getting worse. Her GFR is down to a 13. Most people start dialysis when their GFR is between 10-14. So Laura was doing research tonight on dialysis and it’s all pretty scary.

We have an appointment tomorrow with the¬†nephrologist and that’s one of the things we’re going to bring up. We’ve read that each dialysis procedure takes about 3 hours so is it better to do Home Dialysis¬†(this is where you bring home a machine and do it all yourself) or do we go to the outpatient hospital and do it there 3 times a week?

The only thing that brings us comfort right now is this verse:  Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.’   Isaiah 41:10

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Learning from Sam Berns

Okay, kidney disease sucks! We all knew that already, but I just wanted to get it out there and say it. Some days are better than others and some days just plain suck! On those really sucky days, the only thing Laura can think of is:

  • “Why did this happen to me?
  • “What if I would have tried a different medication?”
  • “Would¬†I be this sick if I had taken been healthier and eaten healthier?”

Then you realize that things could be much worse. You see that there are people out there who are in worse situations, yet remain strong. For example, Sam Berns was a 17 year old that suffered from a disease that caused him to age prematurely called progeria. Unfortunately, he passed away in January 2014. However, he showed us that we have to focus on what we CAN do not on what we can’t do. We can all learn a great deal from him and how he lived his life.

In October 2013, Sam went on stage and gave a very uplifting Ted Talk called “My Philosophy for a Happy Life”. Here it is…

Thank you Sam for showing us how to be strong!

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Not an easy day today

Hello, my name is Laura and I am 35 years old. This is my first post. I wish I could go into detail of everything we have gone through in a span of 15 months but that would take me pages and pages. Countless emergency visits and hospital stays. This is not easy when at the time I had a 3 month old baby and 3 little ones. Maybe I can recount my story in bits and pieces later.

Today was a hard day, got a call from the nurse in regards to my blood test results, no improvements. I still had a small tiny glimmer of hope that things would somehow turn around. It’s hard to accept bad news. I always saw myself as a very fragile person. How can I deal with this? This was so unexpected all this happened within a time span of a 15 months. My nephrologist said I was the most unluckiest person she had ever seen in her office. I had no history of high blood pressure, no diabetes, no lupus. My immune system simply couldn’t fight the parvo b19 virus that caused my collapsing FSGS (that is what they assume, they are not 100 percent sure).

I had no history of any immune system problems. When you are in this position you think you are alone, but as I read of other personal accounts dealing with kidney disease I wonder how do they cope? It saddens me to see that other people suffer from this terrible disease. All I can do is hold on to the emotional support of love ones, it is invaluable. When I am down I think of my kids and how I have to stay strong for them. I’ve learn so much this year. Yes the world can be scary but I learned that people are kind hearted.

I am a shy person so it is not easy for me to open up but I feel like this is something I need to do. Maybe I can reach out and let anyone going through a similar experience that they are not alone.

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Acthar Gel Injections

In the last few months, I’ve had to teach myself to give Laura shots. I’ll write about that experience in another post, but today I wanted to tell you about Acthar Gel.

The second time we went to the Mayo Clinic, Dr. Fervenza told us there was not much left to do and he was going to recommend a prescription for Acthar Gel as a last resort. She would need an injection twice a week for six months. The only problem is that it is VERY expensive, he said, and insurance usually will not pay for it.

“How expensive could it be,” I thought. Well, you know what they say, don’t ask questions you really don’t want to know the answer to.

“$28,000 a vial”

Are you freaking kidding me?!?!? Someone accidentally fell asleep on the keyboard and added a couple extra zeros right? WRONG, That was the actual price and just as Dr. F had said, insurance was refusing to pay for it. Why is this thing so expensive? Is it some new miracle drug? Does it guarantee that she’ll be cured? Far from it.¬†It’s been around since the 1950’s and I found this¬†NY Times article that said there were no real tests to show that it actually worked at all on kidney disease. No wonder the insurance company didn’t want to pay for it!

The pharmaceutical company said they would give us a couple vials free while they appealed and tried to get it covered. Two weeks later we got another denial letter. “EXPERIMENTAL TREATMENT” was the reason for denial. They appealed two more times and each time¬†we got a denial letter with the same¬†reason for denial.

We were then referred to NORD (National Organization for Rare Disorders) and after filling out the application for assistance, we were approved and have been getting the medication for free. So I’m hoping that this medication will actually make a difference.

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Family Meeting

Well, we’re one step closer to getting Laura on the transplant list. On Thursday we had the family meeting with the social worker,¬† Maggie, which was one of the requirements for getting on the transplant list.

We got there at 8:30am and rode the elevator to the 7th floor. We waiting in the lobby for about 10-15 minutes before Maggie arrived and took us into a conference room. There we sat, everyone wishing this was just a dream and that Laura wasn’t really sick. No one imagined that we’d be put in this position, needing to talk about kidney transplants and who would be willing to do what. In attendance were Laura, myself, Laura’s mom (Marisela), all three of Laura’s younger siblings (Jr., David, and Esmeralda), and our two youngest kids (Jayden and Gabriel).

Maggie told everyone that this was not going to be easy on anyone. She said:

  • Laura will not be able to drive for the first five weeks after the transplant.
  • Laura will have two appointments a week (each lasting about two hours) for the first two months and will need someone to drive her.
  • Laura will be on VERY HIGH dosages of anti-rejection medication, which will lower her immune system to almost nothing.
  • To reduce the risk of infection, since children carry lots of germs, Laura will need to have very limited contact with our kids for the first two months and the house will need to be deep cleaned and spotless.
  • Laura will not be able to carry more than 10 pounds or do much of anything for the first two months.
  • Laura will need someone to care for her exclusively and our boys will need their own care taker.

Maggie¬†said that for all of these reasons,¬†Laura’s¬†support group needs to be made up of people who could be reliable and asked everyone there if they would be willing and able take time off work to do this. Everyone of course said yes. “I’m going to open it up for questions now,” said Maggie.

Some background information: About two weeks ago, we were told that Laura’s little sister, Esmeralda, would probably not be a good candidate for kidney donation because she’s only 23 and hasn’t started a family yet. They told us that it would automatically be considered a high risk pregnancy if she were to get pregnant and only had one kidney. We had relayed this information to Esmeralda and she seemed a little sad about that.

Fast forward back to the meeting… Esmeralda said she had a question. Then came the tears. She said she’d be willing to donate a kidney even if that meant she wouldn’t have any children of her own. You could tell this was not something she said impulsively. She had given it lots of thought before those words came out of her mouth. No need for Visine today, there was not a dry eye in that conference room. Even Maggie was struggling to keep it together.

Junior, David, and Esmeralda all turned in their donor evaluation cards that morning. Unfortunately, they don’t want to start doing any testing to see if any of them are compatible until we have the money in the fundraising account.

So now that we got to cross¬†off the family meeting from the list, I think it’s time to¬†start focusing on the fundraiser. This is going to be very hard for me because I’m not used to asking people for help.

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Ever feel like an ant?

Two weeks ago, we had the initial transplant meeting. It was an all day ordeal. We had to meet with the transplant doctor, followed by the social worker, and finally by the finance specialist. After meeting with all three of them, they have a “team meeting” to discuss your case and all three of them must agree to put you on the transplant list before you can get listed.

The Doctor

The doctor basically striped out all hope of her getting better and not needing a transplant. Everything we said, were we saw a little glimmer of hope, was quickly squashed and discarded.¬†¬†It reminded me of a little kid playing on an anthill, just squashing the little ants. No matter how hard the ants run, just when they think they are getting¬†away,¬†they end up like pancakes. Yea, just like that… our hope was squashed. I guess we shouldn’t have expected anything different. After all, he is a TRANSPLANT DOCTOR. His job is to transplant organs, not try to save your “native kidneys” as they call them.

“I want your kidneys to fail and¬†I want you to go on dialysis”

Yea, those words came out of his mouth. “It may sound harsh, but I want your kidneys to fail and I want you to go on dialysis.” SQUASH!! I think that one took out a few more ants from our anthill.¬† He said that with her “native kidneys” gone, he would be able to take her¬†off all the anti-suppressants she’s currently on.¬†¬†He wants Laura to be on dialysis for a few months so that her immune system can fully recover so she can recover faster after the transplant. He’s also hoping that once her immune system recovers, she’ll be able to finally get rid of that crappy parvovirus.

“I’m going to knock out your kidneys”

Our anthill is quickly shrinking. He said that if Laura’s “native kidneys” are still working when the time comes for the transplant, he wants to “knock them out.” That’s politically correct speak for “I’m going to kill them off.” He said that because her kidneys are spilling so much protein, he needs them to stop working completely so that if the protein spillage continues after the transplant, he will be able to know if it’s coming from the new kidney or not. Instead of doing a nephrectomy (removing the kidneys), he said¬†he would just inject them with something that would “knock them out”… What a relief I thought they were going to do something bad. SQUASH!!

The doctor said that as far as he’s concerned,¬† he’s going to give us the thumbs up to get on the list. The only think he is going to require is an echocardiogram.

The Social Worker

When the social worker came in to speak to us, Laura was already pretty upset. She introduces her self, tells us what her role is going to be, and then asks:

“So why do you want a new kidney”

“She doesn’t” I say, “she want’s to get better without it!” Come on really, what kind of question is that? Although it wasn’t as bad as when we went to the first transplant seminar a couple of months ago when the entire audience was asked, “Who wants a new kidney?” When half the of them raised their hands, the lady said “Good, cause that pays for my salary so I’d like to do a few this year.” SQUASH!!

Anyway, after a few more ridiculous questions, she said she would clear us to be put on the transplant list with the following conditions:

  • We need to have a family support meeting with the social worker. She wants to ensure that Laura’s support group (her family) knows what will be required of them and how important it is that they be reliable.
  • We need to get clearance from any mental health professional that Laura may be seeing.

The Finance Specialist

After being squashed for about three hours straight, they finally send in the big kid. He’s going to make sure he finds the queen ant and squashes it slowly. He came in with a big stack of papers.

“I’ve called your insurance company and this is what they will and will not cover.” He gave us what seemed like an entire ream of paper. He went over all our copays and deductibles. He asked questions to see if Laura could get on disability or Medicare. Of course, she’s not eligible for either one. Apparently, you need to have worked for 3 or 4 years out of the last 7 (or something like that) to be eligible for disability and since she hasn’t worked since 2005 when our first son was born, then she’s out of luck. SQUASH!!

“The good news is that you’ll be eligible for Medicare once you start dialysis,” he says.¬† I think to myself, “There’s something to look forward to.” We spend the next¬†¬†hour opening up our entire financial life to him. How much do you pay for your mortgage? How much do you pay for your vehicles? How much do you spend on groceries? How much…?? How much…?? How much…?? SQUASH!!

“This is the cost of the medication you’ll be on for the rest of your life once you get the transplant.” He then proceeded to go though each and every medication along with the cost of each one. “With your insurance coverage and your deductible and copays, it’s going to cost you about $8,000-$10,000/year in “maintenance costs”. SQUASH!! SQUASH!! SQUASH!! SQUASH!! SQUASH!!

“I’m going to require a fundraiser”

Yup, we knew that was coming. He said that before he would agree to let Laura on the transplant list, he was going to require that we start a fundraiser and raise at least $4,000. He said he’d really like to see $8,000 in the account but would let her on the list as long as we raised $4,000.

I think they finally found the  Ant Queen. SQUASH!!!

 

 

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fsgs.torresfamily1.com – Day 1

I just finished creating a new subdomain and installed WordPress¬†to tell the story of my wife’s battle with FSGS. I’ve made her an author as well and hopefully you’ll get to hear things from her point of view. She’s a very private person (yes, she didn’t really like the idea of me doing this, but I didn’t ask her for permission) so I have a feeling I’ll be doing most of the posting.

My goal is not only to tell her story, but maybe if you know someone with FSGS, you can show them they are not alone. This has been a pretty nasty disease and¬†I know I would have appreciated finding and reading someone else’s experiences.

It’s¬†already been a little over a year since she first got sick and we’ve been through a lot, but in the next couple of days, I’m going to bring you up to speed on everything that’s happened over the last year.

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