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!