Round 16!

Last week, I had my 16th round of IVIG infusions. I didn’t get a chance to write any blog post like I normally do each day, as I was so exhausted each day. I think my body was still recovering from the surgery the previous week.

 

So, this is me on day 1. Look at those bags under my eyes!

I had an outside agency nurse, a male nurse. This is the first time I’ve ever had a male nurse. They had to get an outside agency to do my infusions a couple days this month, because my regular nurses weren’t available. He was nice though. If I ever have to have an outside agency again, I’d ask for him.

 

This is day 2, but this is what I get everyday, 35 grams of IVIG and a bag of hydration.

Day 2 went well. I had one of my regular nurses this day, Susan. She’s the sweet, quiet one. I really like her. We have a lot in common.

I actually think I fell asleep for a couple hours this day. I was so tired I could barely keep my eyes open. I really wish my sleep was productive, but I barely sleep. I can still hear what’s going on around me.

I did have some high blood pressure this day. I took a Xanax, and it brought it down to normal. I don’t know what was going on. I didn’t feel like I had any anxiety, but the blood pressure started to go up, and since I’m already on 2 blood pressure medications, a xanax it is.

 

I had both these guys for Day 3. Dallas, the dog, is my emotional support dog, and is always with me for infusions, but the cat, Justice, decided to hang out too and keep me company.

Day 3 went okay. I had the male nurse, Aaron, again today. My blood pressure was a little higher than normal, but not enough that I needed to take any medication. I did fall asleep again for a little while. I told you, I’m just so exhausted. With my surgery the previous week, then infusions the week after, my body is dying for some rest! I also had some side effects; the lower back pain which runs up my spine into my neck, and a slight headache. It wasnt too bad, like it used to be before the hydration. I took some ibuprofen and it helped.

 

I posted this on my instagram for Day 4.

By day 4, I was completely fed up. Not with my nurse, (I had Susan), but with being sick, and having to go through all this. I really need a break from my health. I just keep getting hit with more and more health problems, and I’ve had enough!

After the infusion, the needle got taken out of the port, and I was free! It’s always so great to get to the end of the week, because while the needle is in the port all week, I can’t take a shower. I’m only allowed to take a very careful bath, so as not to get my port wet.

So, that was round 16. I still can’t believe it’s been 16 months already, but it has.

I have some other blog post coming up, of things I’ve done in the last couple weeks, but those will come soon.

I hope everyone is well. Take care!

Muscle biopsy

So, last Monday, September 25th, I had my muscle biopsy done. It was a long day! I was so very nervous when I first got to the hospital. I wasn’t sure if they were going to cut me open or just do a needle biopsy. The surgeon and anesthesiologist came in and talked to me, explained everything, and told me they were going to cut me open to get a good tissue sample. They also told me that instead of sending the sample to UCSD, they were going to send it to New York. I’m assuming to the Mayo Clinic. I don’t know why the last minute change, but whatever gets me some good lab results and some answers, I’m all for it.

I was in pre op for about 2 hours, surgery for an hour, and recovery for about 3 hours. I heard from the nurses that they had a hard time knocking me out, and had to give me extra anesthesia. That’s not the first time I’ve heard that after a surgery, so I guess it’s something I’m going to have to deal with from here on out.

For the past week, I’ve had a hard time walking. The pain has been really intense at times. My husband was able to stay home with me for 4 days, but he had to go back to work on that Friday, so I was basically on my own. Going up and down the stairs to take the dog out was pretty rough. For 2 days after the surgery, I wasn’t allowed to go up and down the stairs. I didn’t even leave the house those days. Just laid on the couch and caught up on my tv shows.

This was me before the surgery in pre op!

This is my surgery incision. They used dermabond to cover my incision, instead of bandaging it. This incision is about 3-4 inches.

It’s now a week later, but I haven’t taken a picture of my incision. It looks nasty, and is all all bruised. The dermabond is peeling, but it’s healing nicely. No infections or anything, thank goodness! It also still hurts on a daily basis, but it’s more tolerable.

I go see my surgeon next week for a check up. I don’t expect any problems or anything. I also don’t expect him to have any results either. I think my results are being sent to my neurologist anyway.

That’s it for this update. More to come later!

Surgery scheduled.

So, my muscle biopsy is scheduled for Monday. I’m so nervous. Not because it may hurt, or that it’s still surgery, however minor, but because it means I may have something else wrong with me and I’m not sure I want to know now.

I went this morning for pre op. I did all the paperwork for surgery, and had some blood work. I also talked with a pre op nurse, who went over my history, told me about the surgery, and gave me my pre op instructions. She also told me my surgery is scheduled for 1pm, and I have to be at the hospital at 11:30.

My surgery should take about an hour, and I’ll be in recovery for about 2 hours. Then I get to go home to rest. I have to have someone stay with me for 24 hours, then I should be okay. My husband is going with me.

So, that’s it. Will write another blog post after my surgery, when I’m coherent.

Keep me in your thoughts and prayers on Monday!

Muscle biopsy and Stress

Lately, I’ve been under a tremendous amount of stress. There are so many things going on in my life, both internal and external. I don’t really want to go into all that though, because I don’t want certain people to see what I’m writing. So sad when you can’t write what you want, because some people are nosy and will get butt hurt! If anyone knows how to keep a certain post private, please let me know in the comments.

Anyway, I went to see the surgeon yesterday. I don’t remember if I already wrote about this, but all my doctors think I might have some sort of muscle disease/disorder going on. I was sent to a neurologist, who did an EMG, which showed some muscle atrophy and damage. He, in turn, requested I get a muscle biopsy, so we can narrow down exactly what is going on. It took 3 surgeons, before they found one who would do the biopsy. The first 2 surgeons were neurosurgeons, who said they don’t do muscle biopsies, like it’s peasant work or something. Finally, I was sent to a general surgeon, who I finally saw yesterday. He was really nice, and seemed to really care about all I had gone through with the other surgeons the past few weeks.

Since I have an HMO, we have to get approved for the biopsy first, but the surgeon put the authorization in as an urgent request. I’m hoping to have an answer from the insurance company by Monday. Then we’ll schedule the biopsy at the first hospital or surgery center that can get me in the quickest. I just want to get this over with, and get some answers.

Please keep me in your prayers about all this stress I’m going through. Will write another post as soon as I find out anything.

Round 15 Day 1-4!

I’ve been trying to write this blog post all week! It’s been a horrible week. I don’t usually do the whole week of blog post infusions in one post, but since this week has been hell, I haven’t been able to concentrate to write each day.

My infusions are going well, but I’ve had a lot of stress going on around me. It’s been so bad in the last 24 hours. I don’t know if I can handle anymore! I just don’t know what to do! It’s been causing havoc on my infusions, in the sense that my blood pressure has been high, and I’ve had really bad anxiety. I’ve just had enough! I’m glad today is my last day infusion for this week.

Here are some pictures from this week:

img_2042Day 1. Got port accessed! Good blood return! Yay! No problems!

Day 2 underway! Got all my bottles of IVIG and IV fluids going at the same time. Thank goodness for the fluids. It really helps with the side effects! I highly recommend it!

img_2052-1Day 3. I really needed to hang onto this today. The stress from my life is really getting to me. There’s too much going on. I can’t handle it much longer.

IMG_2057

Day 4 is here. I’m so glad it’s almost over. I got more stress today, that has really caused my blood pressure to shoot up, and anxiety to take over. I can’t handle anymore! All this stress is going to be the death of me. Jesus, take the wheel please!

I’m looking at another couple hours, and I’ll be done. I don’t plan on doing anything this weekend. I just want to chill on the couch, watch some tv, and watch my Cowboys play on Sunday! I’m so over this week, and I need a break!

Have a good weekend!

Labor Day weekend with Ivorie!

So, this past weekend, I had my granddaughter, Ivorie for 3 days. She’s 5 months old now, and is just the best baby! We had so much fun playing, watching tv, shopping, and just hanging out. Yes, I know she’s just a baby, but I love spending time with her. I wish I could see her everyday, but she doesn’t live all that close to me. I usually have to go pick her up in Orange County, but it’s worth it to me to be able to spend time with her.

Here are some pictures of my weekend with her:

This is when we first got to my house. She’s such a happy baby all the time. I love her smile!

Me and Ivorie together. She loves the camera.

So beautiful!

img_1957Nana’s little baby doll!

img_2015Ivorie and I laying on the floor watching tv together!

IMG_2038This is when I was dropping my beautiful girl back to her mommy. I was saying my goodbyes. I miss her so much already!

There were plenty of other pictures, but I didn’t want to make this post so big. I think I took over a 100 pictures.

I hope to get her again really soon. Please keep her in your thoughts and prayers. There are some things that I’m really concerned about that are going on, and I don’t quite know what to do about it.

‼️MISSING PERSON‼️

This is my son, Michael Pacheco. He is missing. He was last seen in La Habra, Ca on August 6th. He is 25 years old, 5’10” and weighs 145lbs.

On Monday, we filed a missing persons report with the La Habra police department. If you have seen him, or have any information that may help us, please let me, or my daughters, Tiffany Pacheco and/or Alyssa Darling know. Or you can call the La Habra police department.

We are so worried about him! Please pray for his safe return!

Please share!!!

#findMichael

Round 14 Day 4!

Today’s infusion went off without a hitch! No problems with blood return or flow. I’m so glad! Since the TPA worked yesterday, the nurse is saying that it was problem just a fibrin sheath covering the port, allowing for good flow, but not back flow or blood return. Thank goodness! Now I don’t have to go to the hospital and visit Interventional Radiology.

I did have some high blood pressure for the first couple hours of my infusion. Probably because I have so much stress, and not enough support! Thank goodness for my baby, Dallas! He’s the best therapy dog ever! He helped bring my blood pressure down, so I didn’t have to take a Xanax. I’m so thankful for him!

So, I’m done with infusions for this month! Thank goodness! It was a long, stressful week. I don’t think I’ve ever had so many problems in the last year, as I had this month. I’m just glad it’s over! I’m hoping the 4 days of hydration that ran with the IVIG will help with my side effects. Will update after a few days to let you know.

Round 14 Day 3!

The TPA for my port was a success! It took the whole 2 hours, but we finally got blood return, good blood return.

The IVIG ran smooth! Had some lower back pain, that went up my spine and into my head. Only happened when I had to get up to go to the bathroom, or the kitchen. As soon as I settled back into bed, it went away again.

We’re still running some IV fluids along with the IVIG, but I think starting tomorrow, we’re going to run the fluids after the IVIG is done. The thinking here is that since it’s my last day, it’ll help keep any side effects at bay over the weekend. We might just run it like that every month from now on.

Tonight I’m having some lower back pain, but it’s not so bad. I took some ibuprofen, and it’s starting to subside. I think all the stress I’m under right now, is causing me to have a lot of side effects again. For awhile there, I wasn’t getting any side effects, but I’m under a lot of stress right now, and it’s not helping. I’ll probably put some of my CBD lotion on my lower back, neck and head tonight for the pain, and to help me sleep. It really helps.

One more day, and I’m done for this month. I think my regular nurse will be back next month, but I’ll probably miss this nurse that I’ve had for the last 3 months. She’s helped me a lot, but I love my original nurse!

Have a good night!