Life Happens!

I finished Occupational & Physical Therapy back in December. Hooray! But, I still need to keep up with it at home which is easier said than done. So, I’m falling flat on that. Shame on me. Last couple of months I had a good excuse. I hurt my ankle somehow. Honestly, I have NO IDEA how it happened but I think the dogs were involved in the middle of the night. *sigh*

My doctor ordered my home health company to come out that night to do an x-ray of my ankle. It didn’t SHOW a break but it hurt! It hurt for 2 months. I’ve never broken a bone before and I want to keep that awesome streak alive! So, we’ll just say I sprained it. It’s feeling better now but it still aches every so often.

I’ve been using my Trilogy ventilator 24/7 for 14 months now. I’m doing well. I have good days and a few bad days mixed in. Today, I got my Trilogy swapped out with another Trilogy because it came with a modem that will send reports, from the machine, directly to my doctor who prescribed it. It runs on bluetooth. Isn’t technology great? Now, no one has to come to my house to pull a report from the Trilogy via USB and email it to my doctor. I’m usually seeing that doctor via Telehealth and only rarely do I need to show up in her office. I really like Telehealth doctor appointments. I also got a different mask to use and it’s making eating easier. I still have to use a straw to drink beverages though. I did buy a couple of straws that can be reused. One of them is steel and the other is hard plastic. I don’t use disposable ones because they would just end up in the landfill. Boo! But I do miss those flexi straws. =o)

It’s getting to be a pain to lug my trilogy and 2 oxygen portables every time I leave the house. It was funny (after the fact) when K and I were about to leave for an appointment, that we pretty much fumbled through getting me out the door. It is so crazy! I have switch my source of oxygen to use 2 portables with a splitter, change the Trilogy hose to a 6ft one (instead of a 10ft one) and then detach my Trilogy from the base to leave the house. K carries it all as we walk to our vehicle. The first time we did it, I knocked over my tumbler of ice water all over the floor because the hose caught onto it when K was lifting the machine. My dog, Willow, loved all the free ice that scattered all over the floor. We were in a rush. So, we grabbed whatever was close to mop it up. Never a dull moment. We are finally getting a routine down for when we have to go somewhere. YAY! K says that it looks like we actually know what we’re doing now. =o)

I’m pretty much a homebody though. I honestly look forward to days where K gets me out of the house. I feel like I live in a bubble within my home. I stay busy with crocheting, reading, playing Elvenar on the computer and watching our favorite tv show called Tournament of Champions (5th season!). If you like cooking, that show is a MUST see! It’s on Food Network!

I’m also learning something new. We are going SOLAR! I am very excited about this. We will never be without power again which is a relief because, you know…. life support equipment! There are so many details with getting Solar panels and a battery backup. It’s been a huge learning process… There are so many things involved such as homeowners insurance, power company changes, solar tax credit, and so much more. We’re still in the planning stages but it’s going to happen!

I hope you are doing well. *hugs*

UPDATE: Meeting Challenges Head On…

I’ve been wanting to talk about this subject for a time now. It’s made me feel quite overwhelmed. Life, lately, especially the past few weeks has felt chaotic. I got the results of my Annual Physical labwork back… my creatinine was off, my TSH was off and even my Iron was off. What does that mean? Adjust medication and retest the labwork. Ugh. 

I had a good talk with my doctors and the subject of Home Health (Physical & Occupational Therapy as well as Social Worker) was brought up again. This time, we were interested in getting the information to see what I qualify for and also to plan for the future. My health will decline more and it’s better to be prepared. It NEVER hurts to find out what’s available so that you can plan for the future. Better to be prepared than to be in the position where you need it immediately and not know what to do. 

Trust me. Since this is all new to K and me, getting all this information so fast is a bit overwhelming and slightly stressful. However, I’m handling it the best I can and I’m trying my best to stay optimistic throughout this new phase of my health adventure. When I feel down, I think of the roadtrip we’re going on soon to see my family. They always are a joy to see. 

One sister is throwing me a birthday party and the other took my rubber chicken, Birdee, to Cozumel! So how can I NOT be happy when I have a great support system. K has done all he can to help me cope with the changes in my health. He knows my life is hard but we do/change things to try to make it easier.

Taking a shower to wash my hair is ridiculously hard for me to do. If you are familiar with a Bipap and it’s mask that needs to be worn to use the machine, then you know that to wear the mask, you need the head gear to hold it in place. It’s the same thing to use a Trilogy machine. For me, I can’t take a shower without using my Trilogy machine. I want to stay as independent for as long as I can, so I invented a mouthpiece to use by putting together odds and ends of medical accessories. LOL! Even using this, it’s still hard because, to wash my hair, it uses a lot of upper body strength that I’m losing due to my cardiac and respiratory conditions. But, at least the head gear isn’t in my way of washing my hair with my new fandangle apparatus! Crazy awesome, isn’t it???

I don’t shower unless K is home in case he needs to help me out. If I’m in the shower, he stays in the house so he can hear me shout out if I need him. When the water is turned off, he asks if I’m ok. He’ll even help me get dried off or dressed if I need extra help but I’d rather do it myself to give me a sense of independence. The first couple of times I needed him were scary because I started turning bluish gray. Not sure who was more nervous about that between K and myself. I’m constantly thinking of different ways to do things that are hard for me. I have a 10ft hose that I use with my Trilogy. The DME only gave me a 6ft hose which was ridiculous because how was I to be able to park my Trilogy in my kitchen and fix dinner while just using 6 feet of hose to move around? So I got a 10ft hose from Amazon and presto, I became mobile! Much better.

So this week has been incredibly challenging for me. I’ve been so stressed out with people coming over doing evaluations and setting up appointments. I’m not used to so many people coming into my home. Every time someone comes over, I have to lock my pups in a room which of course makes me short of breath. But I’m going to give this Physical/Occupational therapy a try in hopes they can help increase my endurance and maintain, or even improve, the level of my health. Tomorrow, Saturday, is the first day this week that I don’t have to get up early or expect anyone to show up. This girl is sleeping in! I’m just so tired. *snore* Oh hey! Where was I? Oh, yeah….

Eventually, I’ll need care that’s not covered by insurance. It’s better to research that now than to be uninformed when that time comes. 

Not to worry though, I am resilient and I’m excited to see my family and I wonder who will be taking Birdee on her next World Traveler Adventure. One person has volunteered already but I don’t know when that vacation will be. So, I’ll let you know when I know! All I know is that my sister said she got some strange looks from a few people but she didn’t care because she was doing this for me. Awww…. *BIG HEART EMOJIS*

I hope all is well in your life. =o) Just to give you a heads up, I’m turning my blog into a ebook that will be in chronological order!! How exciting is that? I want it to be done with it by the holidays. YAY! *hugs* to you all!

Vacation without me

This is not the first time K has been on vacation without me. He once went with my family to Colorado for a week. That was back before we had cellphones. He had to call me on a payphone when they had stopped to camp. It was his first actual camping experience with a tent out in nature. He was a city boy that went camping. It was a true experience for him. He always says it’s not the same going somewhere without me because he wants to share the experience with me. He’s truly a sweetheart.

Last week, he went to see his extended family in Ohio. To make sure he went, it was an amazing feat of my family doing what they do when they’re called to action. The closer the departure date came to fly to Ohio, the more nervous K was about leaving me at home. He was tempted to stay home. So, I started planning.

As with any caregiver (or is it caretaker?), they need time to rest the emotions and rest the body from having to spend all their extra time (at least with us) taking care of the needs of their loved one (or friend, whatever it may be). Stress from being a caregiver (sorry, I’m going with ‘caregiver’. It just makes better sense to me.), builds and builds. If they don’t have an outlet or a place or an activity for just themselves to relieve stress, depression can set in and even still, it could happen. For you caregivers, I salute you for all you do to take care of the person you love and who needs you. Please try to take time for yourself in what’s called self-care and / or counseling.

I knew the dates that K was going to be gone. I had to get people to cover those dates or at least most of them. I realized if I could get most of the days that someone one was here checking on me, the better K would feel and the more likely he would go and enjoy his time in Ohio. So, I was able to get my BFF (M) to come over the next day after K left and she brought her son with her. We talked for 3 hours! It was fantastic! She asked what I needed help with and I asked her to please take out the trash and the wheel the trash bins to the curb. It was great because I didn’t think we would get them out before the trash people would come. GREAT JOB M & J!

M (my BFF) would text me nearly daily. She knew that my older sister was coming down too. My older sister is a take charge person and got a lot done. She fed the goldfish in our pond outside, made K and I sugar cookies (a batch and a half!), & made sure I was doing well. On Sunday, my younger sister came down who also helped a LOT. So while my older sister was still here, my younger sister held my Trilogy face mask to my face so that my older sister could cut my hair & I wouldn’t get tired from holding the mask. Talking about sisterly love and team work! Way to go SISSIES!

My older sister went home and my younger sister stayed. She and I binge-watch the first 2 seasons of Jack Ryan on AmazonPrime. I couldn’t believe she’d not heard of it before. *shock* FYI: Season 4 of Jack Ryan has been released! YAY! However, K doesn’t like binge-watching anything. He’s a savor-the-moment type person. Ugh! I’m so impatient! Though, there’s only 2 episodes out right now. We also made her favorite Chocolate Oatmeal Cookies to take home. She did all the hard work… including the constant stirring!

All throughout the time K was in Ohio, he would text and FaceTime me. I could tell he was having FUN. He was eating better and smiling more. He knew family & my friend were taking care of me. He even FaceTimed me on the 4th of July so I could watch the parade with him. Awww… it was EPIC!

I did try to wash my hair on Tuesday before my sister went home but I needed her help getting out of the shower again which was discouraging to me. I’m slowly gaining weight. K & I are frustrated because I have to rest more which means I don’t need as many calories. I have a sweet tooth. Now I have to be more careful to eat good food and less sweets. I’m internally crying over that. lol!

So, we’ll be discussing the weight gain with the doctors this month. In the next blog I post, I will discuss and show you what I’ve put together so that I can use my trilogy while showering. My original apparatus that I’ve pieced together works the best but I’m still tinkering with other ideas! I’ve even enlisted the help of my sisters to help me think of different ways to wash my hair. I want to be able to do it myself but if I need help with the hair washing, I want it to be easy for K to help. I will be trying a different idea tomorrow that involves K’s help. Wish us luck! I will not be defeated! =o)

The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.

We went on vacation!!! FINALLY!

Prepare yourself for a LONG read with pictures. 😉

It all began the day before we left for South Padre. You see, we have a cute waterfall pond that’s filled about 8 goldfish. On that day, the pond pump decided to quit working. So, off to Lowe’s K went. It was a good thing that the pump died because K decided to check out the Inverters that Lowe’s had available. When he found them, he FaceTimed me to check the voltage & amps/watts my Bipap runs on. He bought one so that I could use my bipap while in the van!   

Our vacation was pretty adventurous from the very beginning. It first started with my oxygen reservoir we keep in our van for car rides. It decided to start leaking oxygen when we got there. We called Life Support-Dallas, who services my oxygen needs, and K and Eddie (Life Support) walked through through on FaceTime trying to fix it. Well, K did everything right but when he poured hot water on the chunk of ice that was around the leak, the hose snapped off. All the liquid oxygen bled out. See what happened! (Large video 30mb) https://livingono2forlife.files.wordpress.com/2022/10/img_2536.mp4

Naturally we scrambled to calculate how much oxygen I had left and how many refills my portables can use from one of my 2 100lb reservoirs in the condo before we had to go home. Yikes. That was interesting. One of my tall reservoirs can fill both portables 12 times. Then we worried about the hurricane and which direction it was going to go. We made the decision to leave early if it came our way. Plus, we decided, when both reservoirs got down to 1/4 full, we would start for home since we no longer had my van reservoir to drive home on. 

The next day, I asked K if he wanted me to tie a string around his glasses with a little duct tape (I never leave home without duct tape!). He said no because he didn’t want to look like a hill billy. Lol! 30 minutes later, he came back all upset because he lost his glasses in the Gulf. Men and their stubbornness… Am I right ? Lol! Ok so we scrambled to find an optometrist in the area who would see him the next day (Sunday). The doctor turned out to be super nice. We got a prescription and emailed it to K’s eye doctor where we get our glasses made. His glasses are super complex. All the bells and whistles on it. *rolling my eyes* So, his glasses are in the works while we wereon vacation. YAY!

Next, K get stung by a Blue Button jelly fish. My Go-Bag to the rescue again with Medical supplies this time. He’s fine. No real damage to report on that other than slight swelling. Wheww! I was like, Dude… don’t even say… “What could happen next.” Seriously, with his vacation track record.. I was fearing the worst! Well, the drama calmed down and we had a good time. He went to the beach every day and walked the dogs a bunch. Willow became our beach dog who chased the little hermit crabs and seagulls. Neither dog wanted anything to do with the water which was ok with me.

The water heater in the condo was not functioning properly. We had lukewarm showers and I had to heat water to hand wash the dishes (no diswasher). The night K lost his glasses in the Gulf, he went down with a flashlight to look for them along the water and found a $500 boombox bluetooth speaker system floating in the water! Wow! He was all excited. I posted information on Facebook in the SouthPadre Concierge and no one claimed it. K brought it home with us.

We went to the Fire Station to check out the Mobi-chairs (wheelchair for the beach that has large fat tires!) that we could’ve checked out for free to help me get down to the beach. However, we tried my wheelchair down the boardwalk to the sand, parked it at the end, and I could walk the rest of the way slowly. So, we didn’t need the Mobi-chair. It’s nice to have one available for free if I needed one though. The fire fighters were super nice and said they had oxygen if I needed it. I don’t think they realize just how much oxygen I use even though we told them 8lpm 24/7. *shrug* =o)

We went down to the Jetties where the shipping channel is. We watched the surfers catch a few of the higher waves that the hurricane had caused. We had a few red flag days there at the end for the water danger. That is where K went for a walk down the rocks of the jetty and found a turtle stuck head down between two massive rocks. Poor thing. We tried to let people know who where there but they all said not to touch it.. talk of big fines.. blah blah blah. So, he came and told me and we looked up the Sea Turtle Rescue place that we visited the day before and got them to come out to get the turtle out.

K got to name him Jagger (after Mick Jagger, of course!). They wouldn’t let him name him after Mike Modano (Dallas Stars!). We went back a few days later and checked on Jagger. He was doing well. Hope to watch his release on Facebook when the time comes. Every Friday and Saturday night we would go out on our patio when it got dark and a restaurant would set off fireworks that lasted about 5 mins. It was great! 

We had a great time. I felt a little weird driving with my Bipap on. I’m just glad that K had to go to Lowe’s before we left for vacation because he found the inverter I could use to plug in my Bipap and use in the van. I don’t think I would have made it there and back without the use of my Bipap during the drive. My breathing has become very challenging now. I use a Bipap almost all day and night now. 

[Health Update] I am going to contact my Sleep Lab doctor to get the ball rolling on getting me the more advanced machine called Trilogy. It can run on batteries or be plugged in and it’s mobile. I could use it anywhere in the house or in the car. It’s time to take that next step. K is slowly adjusting to my new health limitations. I’m proud of him because I know this isn’t easy for him at all. I just had my Telehealth visit with my Pulmonary Hypertension doctor. Everything we are doing is right. It’s just with age and progression of my limited ability to breathe, I’m happy that my heart is holding up as well as it has been. My lung volume has dropped. So, using the Bipap as much as I do now will keep the CO2 at a lower level. My next step will be getting an Echocardiogram (for internal blood pressures & chamber sizes) and a CT Scan on my ascending aorta aneurysm. I’m not a surgical candidate for fixing the aneurysm. There’s nothing they can do for it … just monitor it. It’s definitely past their criteria for surgical intervention. I am worried about it but I can’t spend my life worried about it. Just keep living life as much as possible and fill it with fun things to do.

I hope you all are doing well. Here’s a few pictures we took. We went on a painted turtle scavenger hunt!

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Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you. 

I AM HERE!

Doctor appointment day!

Yes, it’s me! I’m still here kicking the can down the road. I’m still alive. Hooray! Go me! This month has been filled with a lot of doctor appointments. K drives me everywhere now. So much has changed for us because of my health. K carries a heavy load of responsibility to care for the both of us and he does A GREAT JOB! 

Years ago we discovered that my ascending aorta was slightly dilated. It’s been a “wait and watch” sort of medical issue. That was back in 2010, give or take a few years. Now, it’s gotten to the point where I had to see a specialist cardiologist who deals with surgical interventions of Aorta Aneurysms. We knew what the doctor was going to say before we even went to the appointment. However, knowing what the doctor will say and actually “hearing” it, puts the fact of knowing that I’m not a surgical candidate and there’s nothing they can do for the aneurysm, has a finality to it. But you know what? I’ve heard that before about a lot of my health issues. No big deal. I can deal with this. Sure, my heart skips a lot and I have an aneurysm… that kinda sound bad, right?… my primary cardiologist feels that my cardiac problems are NOT life-threatening. A big WHEW! I’ll take that answer.

I’ve slowed way down and that’s ok! I can still make dinner and clean the kitchen most nights. So, *thumbs UP* I’m up to 8LPM of oxygen 24/7 and still use my Bipap when I sleep or if I need to power up during the daytime. In fact, I’ll be going to my pulmonologist next and then to a “special” pulmonologist after that. K and I are going to see if I would benefit more using a Trilogy machine instead of just the basic Bipap. (NOTE: if you own one of these machines, there has been a recall for certain ones. Find out more here.) A Trilogy machine is basically one step under a ventilator but one step above a Bipap machine.

Our long vacations are over. I just use too much oxygen and my health is too precarious to risk a long vacation. Our vacations were usually about 10 days which also allowed me time to rest when we got where we were going. It is just too much for me now. However!!!! K surprised me the other day and told me he was secretly arranging a trip up to see my family! I’m so excited! It’s a 3 hour drive and I’m pretty sure I can handle that. We’ll be taking my pups with us. 

Unfortunately, I won’t be able to get my 2nd covid booster shot before we go. I’m a little nervous about that but my family have all received their shots. So, I’ll be as safe as I can be while there. 

It’s getting really stinkin’ hot here. I think we totally bypassed Spring and jumped right into Summer. We’ve already hit 99 degrees. So, let’s stay safe out there. Carry water with you if you have to go outside. Be well! =o)

When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)

I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

My adventure today…

Living On Oxygen for Life

This was my adventure today. I made cinnamon swirl bread because K asked me to try to make it. It came out a little muffin-topped but when it cooled down a bit I cut a slice off and ate it warm with butter. It’s delicious even though I forgot to add salt. Oops! I read that it makes great French toast. Uh, who doesn’t like French toast???

From start to finish, this bread took me 3 hours to make. While I waited for the rise time to finish, I rinsed the dishes I used and ran a load of laundry through the washing machine. I’m still getting use to our new high-efficiency washing machine that looks like it barely uses enough water to dampen the clothes and has no real clothes agitator. Is it just me or do you wonder how or if the clothing even gets clean? It boggles my mind.

It’s definitely quiet time now at 5:30 pm and I’m ready for a power nap. So, I’m going to strap on my bipap machine with my oxygen and lie down to recharge enough to make dinner in about an hour or so. It feels like it’s been a long day.

I hope everyone has had a good day so far!

Crazy Awesome Weekend with Family!

Living On Oxygen for Life

I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.

When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!

After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.

While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay! 

We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out.  My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy.  I asked to borrow it but I didn’t think it’s transferable. Darn! 

We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen. 

So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.” 

I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me. 

Going the extra mile…

Living On Oxygen for Life

I know I’m a lucky person. I have a husband who loves me and takes care of me in ways that I have no idea that he’s doing it. May 26, 2017 was one of those days.

Last year, K found out that U2 was coming to Dallas, Texas in 2017. It’s rare that they come here and they are one of K’s favorite bands of all time, next to Pink Floyd, of course. So, he asked and then begged and told me how important this concert was to him. He said he’d consider it his birthday AND Christmas present if I’d buy these tickets for him. I’m the CFO (Chief Financial Officer) of this family. Anything spent, that’s over $100, should be cleared through the CFO. That’s what happens when you’re living with someone who is disabled and has to go to the doctor often and take expensive medicine.

I knew how much K wanted to go to this concert and I won’t lie to you and say that I was really excited about going to the concert at first. I hadn’t been to a concert in YEARS. I didn’t know if I’d be able to last through a whole concert. I mean, how long do concerts last nowadays? That question was the most important question we faced going into planning for this night of fun. Yes, I bought the tickets. In fact, for the first time ever, I bought a seat for the disabled and a companion seat ticket. We decided to use my wheelchair.

The closer we got to the date of the concert, I started getting more and more excited. I asked my younger sister how long concerts last and she thought about 3 hours. So, we thought 2 liquid oxygen portables would be enough. We didn’t want to leave before the end of the concert. Two portables would give me about 4 hours of time safely. Though, when you least expect it, things don’t always go as planned. Do they?

On the day of the concert, I dressed up in my retro dress. It took me a while to figure out what shoes to wear and how to tie the belt around my dress. I’m not a fashionista. At all.. but K kept saying that I looked beautiful. So, how could I NOT wear a dress? How sweet of him!

We finally departed our house and drove to the DeathStar (the new Cowboys stadium) and there was a lot of traffic. I whipped out my handicap placard once we got close to the stadium. I told K to slow down and I rolled down my window. Well, I just pressed a button and it rolled down on it’s own. I stuck my head out the window and waved my handicap placard (like I knew what I was doing!) to a cop directing traffic. Yeah, I’m not shy AT ALL. The policeman walked up to my van and I asked him directions on handicap parking. That’s right. We were going in style! We ended up paying just a little extra (ok.. a bit more than I was comfortable with) to park at the building (a sidewalk away) in the handicap. It was right up there near Valet parking. A parking attendant poked his head in K’s window to scope the inside of our van. I don’t think I need to tell you what they were looking for with what happened in Manchester, UK a few days prior. There were police dogs walking the crowd and police with automatic rifles. Texas is serious with security. No purses allowed unless it was no larger than 5″x8″ in size. I actually took my PH International Conference name ID badge that I got in June 2016. It held my ticket, driver’s license, credit card, insurance card and my cellphone. It was the perfect size!

We got in the building and had no idea where to go. However, we quickly found out that if you are arriving in a wheelchair, not only do you jump through the line to enter the building quicker than anyone else. You get some incredibly friendly help from the Event Staff. It was nothing short of AMAZING! We only had to say we weren’t sure where to go and the Event Staff person we asked not only told us where we needed to be but also, TOOK us there personally. It was awesome! I was all smiles and “Thank YOUs!” I have to say the handicap seating was excellent. We were fairly close and not a single person was in front of us.

U2 concert 2017!

Now the scary part. As K would say, we “GROSSLY” underestimated the amount of oxygen we needed for the concert. I use 6LPM of oxygen 24/7 and my 2 portables would last roughly just over 4 hours. It was already 7pm which was when the concert was scheduled to start. It didn’t start until almost 8pm and it was the Lumineers, not U2. K and I talked about what we would do. I told him that I could turn my oxygen down to 5LPM if I just sit here in my wheelchair but I’d have to turn it back up to use the restroom or if I started feeling bad. He had left me for a little bit to find out about souvenir concert shirts. At least that was part of what he was doing. I didn’t realize he was going down to the police or the Event Agent at the door to see if he could later exit the building to refill my oxygen. He said no. He couldn’t let him back in he building if he left. Well that sucks! Right? So, he next went to the fire department personnel and explained our situation to him. He asked if they had oxygen with them and they said not to worry. If we have problems to bring me straight to them and they would help. Wow! (yes, they had oxygen!)

K came back to his seat without even telling me he had setup a backup plan in case we needed it. He even packed a picnic to leave in the van for after the concert in case we were hungry. We had a lot of fun, with my oxygen turned down to 5LPM, I was able to watch the whole concert from start to finish. We even stayed a little longer to watch some of the breakdown of the stage. That was cool too. It was just after 11:30pm when we finally got back to my van but all was well and we had a great time. Quite a number of the event staff and a police officer asked if we had a good time. I’d like to think this kind of hospitality happens everywhere but being Texan, I’m kinda biased. *hugs* haha!

Waiting for the U2 concert… Lumineers will be first!

Lots of love to y’all!

A little thing about shopping carts.

Living On Oxygen for Life

A tragic accident happened yesterday. *sniff* *gulp* I was hot-footing after K in Lowe’s last night, reminding him to please slow down. You see, even after all this time together with each other, he will sometimes forget that I’m slower than he is. “What?!?” You ask. I know, I know. I’m stunned by that revelation myself but it’s true.

K “needed” more garden supplies. I swear for a man who originally didn’t want a yard when we were house shopping years ago, he sure has taken up gardening as if it’s a lifeline. Honestly, it can be and has been. Even though it’s a lot of work, there’s a lot of joy and even a bit of escapism to it. He’s made our yard it our little project that is never finished and that’s ok because we love every change we bring to it each year.

Now, back to Lowe’s. Right. Where was I? Ok I remember. “Slow down,” and he turns around to look back at me while turning the cart filled with bags of dirt. “K, I’m not made for this speed anymore.” I smiled at him and that’s when my life goes into slow motion. I see K about to say something and then I caught something flying out of the corner of my eye.

Have you ever experienced something happening that you knew wasn’t right but you weren’t in the position to stop it from happening? Well, that was K and I. I was too far away and K was still looking at me when the dirt shifted in the cart that he was still pushing around a corner. There wasn’t a darn thing we could do. My portable liquid oxygen tank got squeezed out of the cart’s seat and flew out and smacked the concrete floor. The plastic casing came wide open and top was tilted out way wrong. Oh crude buckets! I gently picked it up, trying to squeeze it back together, when my mind was wondering if these things blowup. Apparently not this time. However, K’s first thought was, “Is it still flowing oxygen?” Isn’t he so sweet???

Miraculously, the darn thing was still working but I asked him what would he do if it didn’t. He said, “We’d figure it out. We always do.” What a guy, right? It wasn’t until we got back to home that we tossed around some ideas of what to do in that scenario. It’s always good to have a plan in place for such things because I can not be without oxygen for very long before I start to suffer badly and that’s if I’m just sitting somewhere without talking or moving to conserve my body’s oxygen supply.

When we got home we discussed what we could have done if my portable had stopped working. I’m a little nervous to tell my oxygen provider that my portable is broken. But hey, these things happen, right? A lesson has been learned here for us. We will never forget to strap in my portable tank using the child safety belt in the shopping cart. I mean, we took the time to connect it through my purse strap but didn’t do it this time for my portable.

Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

Sleep Study Time

Living On Oxygen for Life

There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.

I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.

So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.

Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.

If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!

Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.

Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.

Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.