Update...post 7. Warning: Emotional and a little graphic.

First, just a little bit about what has been happening.

Nothing has really changed over the last month or so. My blood wasn't getting as clean as they wanted it to, so I had to go a little longer on the dialysis  machine. No big deal. It's just something for my body to get used to. It has adjusted. I feel much better these days and can do most things easily   but if it's too strenuous I might have a hard time. That's OK. I just take it easy. Yesterday, I had to have a fistula revision because the first fistula did not mature enough. The vascular surgeon said my veins were too small.  So instead of using my own tissue, we had to go the artificial way. Now I have an AV graft. I'm not happy about that, but what can you do? It's already in place and just has to heal from the surgery and is ready to use. It's already large and the size that the fistula should have grown to be.  Grafts don't last as long as fistulas and there's a higher risk of infection, but it is better than the catheter in my neck.

I had a photography fundraiser over the last several weeks which was a HUGE success! Thank you to everyone who shared my advertising, pictures, had pictures made, and donated!!!   There will definitely be more of these in the future. It's definitely a better way to raise money for what I need rather than just asking for it with nothing in return.  I have applied for disability and it is supposed to be an automatic approval with kidney failure but there's a waiting period and paperwork got delayed. As soon as that goes in effect we will be in a better position.

Now, I would like to thank some special people in my life.

First, my parents.   These are some very special people. They would do anything for me and my family and I know they love us so much. They are there for anything I need, including paying a whole house payment for me when we were really struggling recently.   My mom went to training class with me for almost a month to learn how to hook me up to my machine and unhook me. Then she helped me train Victor when we got home so she didn't have to come to my house every day. I know she didn't mind coming, but she had to go back to work too.  I could not ask for better parents. Mama and Daddy, I love you both so so much. Thank you for everything that you do for me!!

Second, my brother and sister.   I love them and they love me and I know we would do anything for each other. They love me so much, that both of them have offered to be tested to be a donor for me. What more could a sister ask for?  Not much. They want to literally save my life. Mic drop here.

Third, Heather and Chuck.  When I first had kidney failure, we were in the middle of trying to sell our house. It's sold right before I went in the hospital. Victor and my family moved out while I was in the hospital for a week.  They let us stay with them for two months while I recovered and we looked for another house. I know it was a huge burden on them and their 4 kids and I want to thank them publicly. They have done so much more than that also. Heather is always there when I need help getting Lacie where she needs to be sometimes. Best friends like us are hard to come by I think. We love each other like sisters. We even look alike! Ha ha.

Next, my kids. I have the best kids in the whole world. Jake has been a huge help around the house. Cleaning and cooking and learning to do things. He even learned to be my nurse like Victor and my mom so we could be more flexible doing dialysis. It's been great!  I hate that the kids have to watch me go through all of this because it takes a toll on them too. But they are handling it very well.  I don't let them see these posts because I don't want them knowing everything. But just know that I've told them how much I love and appreciate them.

Last but certainly not least, my very special husband Victor. I don't think anyone could love me more than he does. He is my superman.  Without going into detail, just know that we are a special couple who seem to love each other more and more every day if that's even possible. I am told almost daily how lucky I am to have a man like him and I know this is true.  Thank you God so much for placing him with me almost 24 years ago.   God knew then that I would need someone as special as him even if I didn't. Victor, I love you so much❤️❤️❤️

Thank you to everyone else who have helped me, offered to help me, prayed for me, had pictures taken with me, and donated to me.  I love you all!!!!

Update...post 6

Hello everyone. 

We are adjusting to home dialysis and it's been pretty smooth, except for a few small things that we've dealt with.  We were even able to travel to Arkansas to visit Victor's parents.  We just load up the machine and TONS of supplies and go.  It's a pain, but so worth it to be free of the clinic.

I've turned in my paperwork to start the process of getting the transplant.  I should here from the transplant center in the next few weeks to go to an orientation.  After that, I will start the testing process for myself to see if I'm a candidate to receive a kidney.  If I'm healthy enough, small enough, no dental problems, no cancer cells, etc, they will start testing any family or friends that would like to see if they're a match for me.  Giving 'the gift of life' is an amazing thing for someone to do.  I'm not sure there's anything better than saving someone's life.  I'm hopeful that someone close to me is a match because that would mean getting the transplant sooner and off of dialysis (as long as there are no complications).  But if not, I'll be on the waiting list.  From what I've read, people are on the list for an average of 5-7 years.  I don't want this to sound morbid, but the sooner I get a kidney and off of dialysis, the longer I will live.  It's not something I try to thing about often, but it's the truth.

I'm about to start figuring out some fundraisers to help with some of the cost.  Insurance will cover A LOT of everything, but I didn't have insurance when this all started so I have thousands already racked up.  I'm not too worried about that part.  It's the future that I will need to save for.  Without talking to the transplant center, I'm not sure exactly how much I will need yet, but I do know that the anti-rejection meds will cost approximately $500-$700 per month (that's with insurance).  I'll be on meds forever, but I believe that cost will go down after a while.  I'm still trying to figure all this out, but I need to be prepared.  My great friend Stephanie already set up a fundraiser site to start the process.  It's linked below.  I'm planning a garage sale and possible bake sale.  I have a lot of doctor things going on now, so I probably won't start these until after the holidays. 

https://www.crowdrise.com/help-misty-parras-live-with-esrd

I had a sono of my fistula today and will get the results Thursday.  If it's healed and ready for use, I'll go through another month of training to place my 'button holes' and learn to stick myself with 2 large needles in my arm just above my wrist.  I know what you're thinking, but it is what has to be done. 

I see a cardiologist Tuesday.  Please pray that what's going on is minor and has nothing to do with my kidney disease and doesn't affect getting a transplant in the future. 

Things are going good physically for me except for some fatigue.  The State Fair is offering free tickets to officers and their family this Friday so we will go.  I'll be pulling the wheelchair out for this one.  But that's ok.  I'm staying as positive as I can.  I'm very lucky to have so many people in my life that love me and want to do so much for me.  I love all of you so much! 

Update...post 5

It's been a little while since I posted last.  A lot has happened!

I went through home hemodialysis training to do treatments in my house.  Training went great.  It lasted four weeks.  My mom trained with me the last two and a half weeks so she can assist with putting me on the machine and taking me off.  I need someone to do that part because with a central line in my neck, I'm very susceptible to infections.  If I do it myself, I could breath directly on the port and cause problems.  We all wear masks whenever dealing with that.

I finished training on Friday 8/12 and had the weekend off.  Then Monday, my nurses came to my house for my first treatment at home.  Things went perfectly and they left.  We are completely on our own now!

Tuesday 8/16, I had surgery to get the fistula in my left wrist.  The surgeon attached a vein to an artery.  The vein will grow and in about 2-3 months, I'll be using that port for dialysis instead of the central line.  The central line will come out (thank you God), but then I'll go back for training to learn how to stick myself with two needles in the fistula.  I'm actually getting very anxious about this part. I joined a few online support groups recently and hopefully I can connect with some people that can make me feel more comfortable about doing it.  I can have someone else do it,  but 'they' recommend doing it myself because the needles will need to go in the exact same way every time and it's easier if the patient does it.  I'll be doing a technique called a button hole.  I'll go in the same hole with a sharp needle for a certain amount of time and build up scar tissue.  It's supposed to not hurt as much after the tissue builds up and then once the button hole is there, I'll switch to a more dull needle.

Things have been going very smoothly since I've been home, except for one day this week.  The tubes attached to the central line have a little connector on them that are supposed to keep the lines from coming off accidentally.  I was almost finished with dialysis when me, my mom, and Victor were getting everything ready to come off of the machine.  I started to undo the connector and the tube broke!!  Blood was going everywhere.  All over me, my chair, the floor.  We scrambled for just a few seconds to sort of gather our thoughts.  I clamped the tube that was connected to the central line so no more blood would come out of me.  My mom and Victor worked together to get the other blood cleaned up and I walked them through what to do.  I lost the blood that was in the tubes and of course what was all over the place, but we handled it and were all ok!  We had great nurses/trainers that taught us what to do in an emergency.

So now, my family and I are adjusting to dialysis at home. Between set up, treatment, and clean up, it takes about 4 hours and I do this 4 times a week.  The treatment itself is 3 hours. Because I get to do this at home, I can rearrange my schedule some, and I don't have any driving time added.  I'm scheduled for treatments on Monday, Tuesday, Thursday, and Friday, but if something comes up one of those days, I can always do it on an off day to make up as long as I do 4 days a week.  It's really very convenient and I'm so glad that it is an option for me.  It's not an option for every patient.

So keep the prayers coming!  Now just pray specifically that finances don't become an issue.  I'm having some insurance issues and changes and I'm not sure how everything is going to play out.  I've only been on dialysis/kidney failure since May, and you would not believe the cost of everything so far.  There will be help from the American Kidney Fund and with the social worker at my clinic to get everything I need, but it's not enough.  I need a secondary insurance to cover what the primary doesn't and I need to get that ASAP.

So....prayers are needed and welcome please!!

Update...Post 4

Hello everyone!  I haven't had any updates to post until now. I just found out that I will begin Home Dialysis training Monday morning. That's very exciting!  There are so many benefits to doing it at home. I can do it more often which means that I will feel better.  The machine is portable so I can take it anywhere!  The supplies will be shipped to my home.  I'll train in Plano for about a month and I will need someone to go with me for one to two weeks to learn what to do in an emergency.  My mom will accompany me so Victor can save his vacation/sick time up for when we really need it (transplant). Then my mom and I can train Victor at home.  

I'm already doing much better.  The dialysis treatment is doing its job. My levels  are slowly getting where the doctor wants them.  Potassium, hemoglobin, and phosphorus levels are within normal limits.  There is no excess fluid.  My protein level is  low, still working on that one. There are a few other things they watch that I don't have enough knowledge to speak about, but they're ok too!  

I'll get the access port put in my arm sometime next month  I'm still using the catheter in my neck. When the access (fistula) is healed, I'll go back for more training on how to stick myself in the wrist and hook up to the machine that way. 

That's all for now. Thank you for the prayers!  

Update...post 3

Thank you all for the comments you're leaving and all the MANY prayers. They are so appreciated. Keep them coming!

I got the first Hepatitis B vaccine today. I started a different protein drink instead of the original one. The other was 8 oz and I never could finish it (I had a gastric bypass several years ago and it had too much sugar in it, made me sick).  The new one has just as much protein, but is more like 1 oz, but it tastes GROSS!  But it's what I need.  I started driving myself to dialysis this week. 

Honestly, that's all that has changed since last week.  Sorry to be so boring! 

Update...post 2

Just a quick update!  

So I've decided not to leave anything out, even if it's a little graphic.  Many people actually really want to know what's going on and are interested in details.  I figure if you don't want to read it, you don't have to.

There haven't been very many changes since my first post last week.  Just getting my blood cleaned, taking my medications, and trying to eat the way I'm supposed to. The only thing I've noticed is that I'm only urinating once a day now.  I talked to the doctor Monday about that, and he said it happens to just about everyone that goes on dialysis and within months, I will even lose that one day.   

I was hoping to have my new access in my wrist soon, but insurance issues are preventing that.  Hopefully I'll have some answers about that in the next week or two.

Jake, my son, is with me in dialysis tonight.  He was excited to come, but I think next time he might skip it.  It's very boring.  Just sitting in a room with 20 other people just watching TV, playing with electronics, or sleeping.  The nurses are very nice to talk to though.  It might sound bad, but I think they like when I come in because I'm not 90 years old, I can walk, and talk.  I am a little different than most of the people in here.

So thanks for reading and following this process.  Here are a few pictures over the last week.

ESRD...End Stage Renal Disease.  That's pretty self-explanatory.   This just happened officially about 4 weeks ago.  I've been living with Chronic Kidney Disease, specifically Nephrotic Syndrome and Glomerulonephritis for at least the last 14 years. I was diagnosed when I was pregnant with my now almost 15 year old son.  You know that urine dip the obstetrician does when you're pregnant? Mine showed WAY TOO MUCH protein in it throughout my pregnancy.  Once I had my son, I saw a specialist and had a kidney biopsy, and bam!  Kidney Disease.  It has been mostly stable all this time.

About 6 weeks ago, I started having shortness of breath in the middle of the night.  Every night.  I thought I had developed asthma.  That's what I thought it felt like.  Both of my kids have asthma and I even borrowed their inhalers and nebulizer.  I felt better after I used them, but not because they were working, but because I got up out of bed.  If I wasn't laying down, the 'asthma attack' went away. Now I know that it was because there was fluid build up in my lungs.  On May 6th at about 11 pm, I could not breath.  I was drowning.  Victor drove me to Lake Pointe Emergency Room in Forney. Almost immediately, the ER doctor knew what was happening and had me transported to Lake Pointe in Rowlett.  After lots of doctors and tests, I was diagnosed now with ESRD complicated with congestive heart failure.  They quickly removed the fluid and did a thorough checkup on my heart. It was perfect.

I had a kidney biopsy the next day which showed what we already knew, plus I now have FSGS. The treatment for that is the same as kidney disease so, whatever.  Then the next day, I had my first port-a-cath inserted into my neck.  In the first picture, I look happy (trying to stay positive).

                      

The surgery for the the port was Tuesday, and I had my first dialysis treatment on Wednesday and the second on Friday.  Luckily for me, I got out of the hospital right after Friday's treatment and started going to a dialysis center that Monday. I have been every Monday, Wednesday, and Friday from about 4 to 8 ever since.

There are many more details from being in the hospital, but I don't think that info is necessary.  Stuff like IV's, catheters, a million blood draws, etc.  The important thing is that they took EXCELLENT care of me and I was so glad to get out.  I left Friday, even though the doctor kept telling me a few more days.  Six days was plenty, including my Mother's Day.  

I started treatments in the dialysis center the next Monday.  They have also been great.  I'm working with a vascular surgeon now to get a new access port inserted in my wrist.  The one I have in my neck now is temporary and the access to the wrist will last for several years.  I had to go back and have a second port-a-cath inserted because the first one didn't work right.  The one I have now is working perfectly.  During this whole process, they realized I'm anemic.  My level is 7.1.  That level is low, but they're concerned because it seems to be dropping fast.  I'm getting iron treatments during dialysis along with Vitamin D, and Rena Vite. I'm taking a blood pressure medicine and also a binder for phosphorus.  I'm on a low sodium, low phosphorus, and low potassium diet.  I'm also drinking these awesome tasting shakes (insert sarcasm here). 

I'm working with my dialysis team to start training to do my treatments at home.  I will have to train for 4 weeks and I have to have another person go with me for 1 week to learn what to do in an emergency.  My Mom will be doing that.  My husband needs to save his vacation time for when I actually need him (like hopefully for a transplant in the future).  We can show him what to do after we learn it.  Hopefully, I'll be dializing at home in the next few months. 

Before all of the breathing symptoms began, I did have other problems that I blew off.  I had very itchy skin and the skin on my arms look weird, but I thought I needed some lotion.  I have learned that it was phosphorus coming out through my skin because the kidneys weren't taking care of that.  My vision had changed some.  I was seeing some darkness when I looked straight ahead and also everything was a little fuzzy.  I just said, "Oh, it's just sinus pressure."  Nope.  Blood pressure was getting very high because again, kidneys weren't controlling it like they were supposed to.  I have also been gaining weight.  I never thought I could have so much water just sitting in my body.  I lost 14 pounds in the 6 days of being in the hospital, and lost another 4 in the next week or so.  The last symptom that I noticed is I haven't been sleeping good at night.  I've had insomnia for quite sometime.  Yep, kidney failure.  My body told me something was wrong, I just didn't listen.

I'm getting better, but I don't have very much energy.  I can't walk or stand for very long.  I borrowed a wheelchair for that.  I found out yesterday that the sun DRAINS what energy I do have.  I can go outside, I just need some shade after a few minutes.  My blood pressure drops if I walk or stand, so I need a place to sit after a short time.  Other than that, I'm feeling pretty darn good. 

The weekend my kidneys decided to fail was supposed to be the last weekend in our house.  It was, I just wasn't there to help.  My husband and AWESOME family and friends took over while Victor went back and forth to the hospital.  They got everything moved into a storage building while Victor, myself, and Lacie are staying with my very best friend, Heather, and Jake is staying with my Mom and Dad. We are doing this temporarily while we purchase another house.  That should be a whole other blog! My husband, who has been amazing and is my superman, loves me so much and has been a trooper.  I need to give a special shout out to my Mom.  She is taking care of my son right now, and also one of my dogs.  She is being Mom and Grandma all at the same time.  Heather and Chuck...not only are they allowing 3 of us plus a dog and cat to camp in one of their bedrooms, Heather is also Mom to Lacie when I'm at my dialysis appointments.  If Victor isn't at work, he's with me at appointments.  I could not even try to express all of the gratitude and thanks and so much love that I have for these people.  Two more people I must mention.  My brother and sister.  They are the first ones signed up to get tested to GIVE ME A KIDNEY!  How much more can I say about that?  There are many more people that I could mention, but I would forget someone if I tried.  Many more family members and friends that have prayed for me, called, texted, messaged, and visited.  Thank you all so much from the bottom of my heart.  I am so grateful to have people like y'all in my life.  You are why I can stay positive!

You can ask me anything if you have any questions.  I'm an open book usually! 

I hope you will continue to keep me in your prayers!