Low Potassium, Low Hemoglobin–Help! STAT!

Today we got a call about the labs we drew up on Tuesday and FedExed back to the clinic.  The nurse calling was very concerned because Carly’s potassium level is 2.2 which is CRITICALLY  low and she asked lots of questions about symptoms.  The only true symptom she is having is shortness of breath and fatigue.  The nurse said she would have a prescription for potassium pills called in to her pharmacy today and for her to take the dose as soon as she gets it.

When the pharmacy called, we picked it up.  These pills are huge.  Carly has really been having trouble swallowing her pills lately, so this should be interesting.  She dutifully took two of the horse pills as soon as we got home.  She also had baked potato for a snack since the potato is high in potassium.

The other problem with her labs was that for some reason her hemoglobin has fallen to 7.2 from being in the 10’s earlier this month.  Usually this means that she has some kind of active bleed in her gastrointestinal system, but she does not exhibit any symptoms of a bleed.  The only good thing is that as long as she stays above 7.0 she does not need to get transfused.  We are trying to avoid needing to get blood because every time she gets blood it changes her antibodies and that makes it difficult if they call for a transplant.

We did get out of the house for fun once today.  We went to a chinese food buffet and had a really good meal at lunch.  Afterward, Carly went to the hospital to get her labs redrawn just in case there was an error in them.  While she was there, the nurse gave her some iron also.  It seems to be a never ending assortment of things that go wrong and we spend most of our time trying to fix things as they occur.

Please, God, let them give her a transplant really, really soon!

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OMG! Could things get any weirder?

Last week was not the best of weeks.  Carly is getting really depressed about being so sick and having to do all these medical things to stay alive.  I am getting frustrated because I am not able to help my daughter and not being home, I am not able to work my business the way I want to.  That being all said, the end or is it the beginning of the next week, was the finaimg_0846l bit of weirdness I could tolerate!

Since Saturday was a day off for both of us, we did manage to go shop at Dollar Tree for aimg_0845 little while, just to get out of the house.  Carly loves to shop and she adores a bargain, so Dollar Tree is right up her alley!  She loves to play with all the cheesy items they sell.

She even was able to go out to dinner with her friends to help Chad celebrate his birthday and she got all dolled up and looked beautiful!

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So all last week we do dialysis just like we are supposed to do.  I’m getting really good at cannulation and she is getting really good at helping me get her all set up.  On Friday, we ran out of both the PAK and the SAK.  The PAK takes about 2.5 hours to complete getting it ready and the SAK takes 7.5 hours to get it ready.  Carly, of course, waited until  late Saturday to get started (Sat. is an off day for dialysis) and we had all kinds of problems!!

First the PureFlow unit would not recognized the PAK no matter what we did.  We had never replaced the PAK before so we were following the written instructions in the manual.  We finally had to call NextStage to help.  Come to find out that the PAK was defective.  Go figure.  We had to pull it out and get another one out.  Now these things are large black boxes that weigh about 15-20 pounds each.  You have to pull the old one out and unhook it then slide the new one in and reconnect it.  The problem is that some of the connections require the PAK to be partially out of the unit.  Once we got the second one installed, we were a go.

Carly complained that the PureFlow unit alarmed all night long after she put in the new SAK, keeping her awake most of the night.  Now, I started to feel bad for her lack of sleep until I remembered that she waited until late to even get started.  She is such a procrastinator!!  Anyway, she was gripey and I was frustrated when we started treatment on Sunday.

Our usual routine on Sunday is to get up early and get her on the machine so she will be done in the morning and I can leave and drive back to Tulsa and still have some of the day there.  Unfortunately, this Sunday was not to be that easy!  We got her all hooked up and running without many problems, but then the machine alarmed and alarmed and we could not fix the problem.  We finally ended up doing an emergency rinse-back of the blood in the lines and just disconnected her because we were both FINISHED.  The problem was that she had no dialysis Saturday and now no dialysis Sunday and she had to get dialysis on Monday, but I would be in Tulsa.

Monday morning, she called the Home Dialysis Center and they had her come up and get her treatment there.  She was so miserable and felt so bad!  When I talked to her on FaceTime, her little face was round with extra fluid!  They were able to let her run for 3 hours and pulled off 3 kilos of fluid.

Today is Tuesday, I drove back from Tulsa and we got her on the machine right away.  Hopefully, she will get back down to dry weight and feel better too!

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Any one interested in reading her blog can find it at BeautyinHardship.wordpress.com.  I warn you, she is very direct and her language may offend, but she is genuine in her feelings.

 

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Why should you get involved with Network Marketing?

This week has flown by.  Carly and I are getting much better at doing her dialysis and getting it done without any problems.  She is busy going to see doctors and trying to get started working from home for her company.  So, in effect, life simply goes on despite what you do!

I am still running back and forth between Tulsa and Oklahoma.  I am still trying to take care of myself, Carly and my sister.  I am doing a really poor job of it, but I will keep doing what I can.  My sister is now sick with a UTI and COPD.  She feels terrible.  I am glad she went to see her doctor Wednesday and is now on antibiotics.   I will probably be able to still get back home this Sunday because she won’t have anything I can catch and bring back to OKC,  where Carly has no immune system.

I have been trying to work on building my business this week. I decided that I needed to educate myself and have been listening to inspirational audiobooks and CD’s (which I have always enjoyed doing).  I especially enjoy listening to Zig Ziglar recordings.  He makes quite a bit of good sense!

I have been researching Network Marketing this week, also.  What I am finding is that this is simply a better way to do business.  Companies can pay out to distributors what they would ordinarily be paying out for advertising and sales.  If a distributor is willing to put in the work (about 10-20 hours a week, so it can be done part-time) and if the distributor makes a commitment to stay the course no matter what (at least commit to working the business for 1 year but better to commit to 5 years) and if the distributor is willing to learn the ropes of the business, then there is no reason to not make money.

Remember, this is a real business.  Where else can you start your own business for a nominal fee; get all the training and support you could possibly need; and have a chance to make your fortune?  I am not looking to make a fortune, but since I retired and now live on Social Security and savings, I would like to have more money coming in each month and eventually build up a good cushion.  I really believe this is possible with network marketing if I just stay with it and learn the very few skills necessary to be successful.

I just read a book called, Go Pro by Eric Worre.  It talks about the few skills you need (he actually outlines 7 different skills to learn) to be successful in network marketing.  Basically, he talks about how he learned these skills (he watched the professional network marketers and did what they were doing) and what he felt was the secret to success in this profession–sticking with it no matter what.

He found that by learning from the professionals around him and by not throwing in the towel when he didn’t “make a fortune in a few weeks” he could actually start making money.  He recognized that a new business requires about 2 years to get off the starting line and he agreed to give his business that time.  He also knew that in those first 2 years most new businesses do not make money or if they do they just make enough to cover the costs of doing business.  He went into Network Marketing expecting to establish a business and that’s what he did.

The problem is that most people join a company with the expectation of making money without having to do any work.  There is no magic about building a business.  Building a business requires time, money, and effort before you start to make money.

Network Marketing has changed quite a lot over the past 20 years.  Now you don’t have to bother your family or friends, unless you want to.  With the advent of the internet you can now run a successful network marketing business online.  That sounds like it must be simple, and it is, but it will still require that you work very hard to build that business.

It really doesn’t matter what the company, or what the product, or what the compensation plan is.  All network marketing businesses are basically the same.  What does matter is your willingness to improve yourself, to learn new skills, to stretch yourself to do new things, and to commit yourself to making this business a success.

That is what I plan to do.  I am looking for a few other people who are willing to do this with me.  I want to find people who want more and are willing to work to get it.  So if this sounds like you, I really would like to speak with you.

If you will leave your name and email here, I can get back with you and we can discuss whether or not this will work for you.  Just leave your info and we can talk.

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Life is all full of DRAMA…

Today is Friday and Carly and I got up early and ran a few errands then came home to do her dialysis.  We got everything set up and got her started  with her treatment without any problem.  (The machine has been creating mild drama for us and if it continues to act up we will have to call the company to see what needs to be done to fix the problem.)  We were so happy that everything was working properly and we were just relaxing through the treatment process.

This machine is possessed!

This machine is possessed!

About an hour or so into this 2 and half hour treatment, the electricity went off in the entire neighborhood.  I made a mad dash to the machine to initiate the emergency procedures to get her blood back before it clotted!  However, after we tried to rinse it back, it became obvious that there was a clot somewhere in the line. So, unfortunately she lost all the blood that was in the tubing and in the machine.

She lost about 90cc's of blood

She lost about 90cc’s of blood

Then, at 4:45 Carly received a call from the Liver Co-ordinator at Baylor that they needed her labs this week and she couldn’t find them.  Carly was confused because no one told us that we needed to get labs done this week; but we called around until we found a lab that not only could draw the labs, but could also get the results to Baylor today.  It pays to be friendly to the workers in the hospital.

So, at 8pm, Carly gets a call again from the co-ordinator to tell her that her MELD score had dropped down from 26 to 24.  We also found out that it was possible that she might get a call this weekend or next week to come in for transplant!  There are two people ahead of her on the list.

Carly also was told that her potassium was 2.4 which is critically low and the doctor at Baylor instructed Carly to call the on-call nephrologist to see if she needs to do anything. She called and got the on-call who said that since she had been in dialysis and did not get to complete her treatment, he felt that she would be okay to eat a banana, or chocolate, or drink orange juice since she was totally asymptomatic for low potassium.

Anyway, it has been a day full of DRAMA and I for one am tired of it.

 

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Had a great breakfast and then the day went downhill slowly

Today started with a bang!  Got up and we went out to eat breakfast since this is Carly’s favorite meal to eat out.  I ate my entire meal without any problem, however Carly had a nosebleed in the middle of eating hers and spent quite a bit of time in the bathroom.  She finally stuffed tissue up in her nose and came back to the table.img_0834

After breakfast, we went to Family Dollar to get a few items and of course Carly had to get a load of candy to bring home.  Her nose continued to bleed, so we left and came home.

Once home, Carly used Afrin nasal spray to stop the bleeding.  It works really well, but then she got a headache because her sinuses were so dry.  She can’t seem to win!

Next, Carly went to see her counselor and while she was there, I went to Barnes and Noble and bought some new CD’s to listen to in the car.  Got a new Zig Ziglar and a Tony Robbins.  Now when I drive home on the turnpike, I don’t have to keep listening to the CD’s I got from the library.

When we got home, I set up the dialysis machine and got everything ready to go while Carly tended to her nose and other personal issues.img_0842

Dialysis went off without a hitch.  She had no problems, we had no alarms, we pulled off the right amount of fluid and we were done before 5pm.  Meanwhile, the two babies spent the afternoon sunbathing!

 

 

 

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There must be something else I could be doing…

After a week of no computer, I can finally get back to the blog!  You never think about how much time you spend on your computer until it dies!

Baylor Hospital in Dallas

Baylor Hospital in Dallas

We went to Dallas this week for her appointment at Baylor Hospital.  It was a very fast trip–drove down Wednesday, had appointments Thursday morning, drove home to OKC Thursday afternoon.  We were both exhausted but pleased with the results from the visit.  Carly met her new hepatologist since Dr. Asrani has moved to research.  He did, however, come to the room to say hello while we were there.   He actually gave Carly a big hug.

Carly's new chair!

Carly’s new chair!

We were doing her dialysis on Friday around 5pm when her new doctor called her to tell her that her lab work came back with some changes and because of that her MELD score was being raised from 21 to 26.

Now, this is a big deal!  Anything above 24 is basically at the top of the list!  We were concerned at first but decided to simply be thankful if this gets her transplant done sooner.

Home dialysis is going well.  We have worked out many of the bugs and know many of the codes for the alarms.  Carly is doing well and says she feels better than when she only did dialysis 3 times a week.

My view from the turnpike!

My view from the turnpike!

I am getting more and more tired.  With driving back and forth between Tulsa (my home) and OKC (Carly’s home) and frequent trips to Dallas Baylor, I am simply exhausted.  I have come to realize that I have no life.  I am a caregiver and nothing else.  Carly is not happy with this state of affairs, even though we neither one have any control over the matter.  Carly wants me to be able to stay home Friday evening through Tuesday morning each week.  That was the original plan, but until we have someone to do her Sunday dialysis treatment that cannot happen.

I would love for this blog to return to the original premise of art, crafts, and fun things.  It will do that eventually.  Until transplant though, I fear it will mostly be filled with my experience with Carly and getting her transplant!

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Home Dialysis is old-hat!

Since I last posted, I have become very comfortable doing home dialysis with Carly.  My sticks are getting better and better and giving me fewer problems with the machine.

We do still have weird alarms that we have to look up in the book and once we even had to call Jo to get it fixed.  Jo says she is sorry that she didn’t give us more experience with the alarms, but unless they go off when using the machine there is no way to make them happen.

So on Friday, we had all kinds of alarms, called Jo and finally ended up giving Carly 300mls of normal saline flush-back because she became hypotensive.  We could not get the machine to do the automatic rinse back afterward, and her lines clotted.  We just had to pull that cartridge out of the machine and she lost all the blood in the lines.  That was the second time this week that she lost blood!

She saw Dr. Thompson and he feels she is doing much better now on home dialysis.  He was concerned about me, though, because he says the biggest problem they have with the home treatment is caretaker burnout.  I told him I was pretty tired, but not to worry.

My view from the turnpike!

My view from the turnpike!

I drove home Friday afternoon and went directly to bed.  I was bone tired by the time I made that 2 hour drive from OKC to Tulsa.  I slept all day Saturday, too!

Sunday, I drove back to OKC and did Carly’s treatment then drove back home to Tulsa when we finished because I had a doctor’s appointment Tuesday morning there.  Need I tell you that I slept when I got home?

Monday, I did very little.  I just played on my computer and watched television.  Carly called to say that her chair was delivered and it was BIG!  She was concerned that she would not be able to make it work in her room.  I told her it would work and we would fix it on Tuesday.

Today is Tuesday and I drove back to OKC.  We got Carly all set up and her treatment going.  Carly had already made room for the chair so that was a done deal.

Carly's new chair!

Carly’s new chair!

Never let it be said that I don’t have plenty of things to do!  Now I will stay here in OKC until Friday after her treatment.

If you are reading this, please pray that Carly gets her transplant very soon!

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Home dialysis in full swing

We have almost made it through this whole week doing dialysis at home and by ourselves.  We have had to call Jo a couple of times to fix a problem, but we have handled all of the issues by ourselves.  I don’t much care for the chair Carly is using as it sits really low and my back hurts when we get done.  Even sitting on a foot stool doesn’t prevent the ache in my lower back from bending so low.  I can’t wait for her to get her real dialysis chair delivered so she will be more comfortable and it will sit higher up so my back will be happy too.

The other problem we have been having is when we stick her arm.  She complains that the needles hurt in her arm after about an hour or an hour and a half.  Twice we have had to stop early because she was in such pain.  Her arm looks like someone has beat it up and left it for dead.img_0811

The bright side of home dialysis is that we can do it when we want to and make dialysis fit into our schedules more easily.  It also is much more gentle on her and so she is not quite as tired and worn out after treatment finishes.  Today, after treatment she went out to the store and shopped.img_0812If you have a spare 5 minutes, go to this site and watch the video.  Put your name and email into the page and watch your team grow like a miracle.

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My experience with a product in my business

I received my product called Instant Youth and decided to try it out.  Here are my before and after pictures.  The after was taken approximately 3 minutes after applying the cream.

before Instant Youth

BEFORE

After Instant Youth

AFTER

I can see quite a difference.  Also the cream continued to work for several more minutes after this picture was taken.  I am a convert.  I plan to use this daily from now on!

 

These product really do work.  Before using the Instant Youth, I have been using the Ageless facial cream daily and my skin is softer, and the dark spots that I get during summer months while driving have receded from my face.

I can hardly wait to get my weight loss products and start using them.  All the testimonials on these products are fantastic.  I’ll keep you posted on my progress with those products.

Another product I am anxiously awaiting to try is the HiBurn8 liquid.  This product is a liquid that promotes improved sleep while amping up your metabolism during your sleep hours.  According to testimonials, people are losing small amounts of weight overnight.  That is something I can really get invested into!

If any of this interests you, please visit this site to purchase product or to find out more about this business.

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Is this a day off?

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Monday we had no dialysis to do. It is a skip day. Instead we went to the hospital so Carly could get an EGD done.

She has this procedure done every 3 months to prevent blood loss in her stomach. She has spots in her stomach that leak blood, so the doctor goes in and zaps each leak with a laser.

After we got back home, we ate lunch and then took a good nap. We both were so tired.

When we got up, we tried to make a SAK for dialysis today. Well, we didn’t do something right and the machine alarmed. We called Jo and she came to the house. It turned out that the connections leaked and filled the tub with 60 liters of water.

After we fixed that mess, we restarted and made a new SAK for the Pure Flow.
By the time we got that all done, it was time to start dinner.

We ate and then I cleaned up the kitchen. Then the day was gone and I had done very little.  This is my day off.  Sound like a day off to you?

Then today, we went back to the hospital.  This time Carly was scheduled to have her perma-cath removed.  She was so excited to get this done because she hasn’t been able to take a full shower since it was put in.  The line goes directly into her heart and so you have to be very careful not to introduce any bacteria or virus or dirt into the site.

img_1326We got that done and ran a few errands before heading back home.  She is supposed to be still and use ice every 15 minutes to prevent swelling.

We will do dialysis treatment this evening because we need John to be available to help so we can get him checked off and available to do treatment if I am unable to get here.

This is a normal day in my life right now.  Not much art getting done.  Not much in the way of crafts getting done.  I am too busy being the taxi for Carly’s myriad appointments and her 5 day a week dialysis.  I am glad I retired and am available.img_1312

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