1/30/2013 Correction Update: Wow! I was really tired when I wrote this post. I didn’t have a PH appointment scheduled today. It was another appointment all together. But, the post below is what I go through for an average PH appointment:
Tomorrow I have an early doctor appointment. This appointment is scheduled at 8 am and it’s an hour drive away. Now, I’m not really a morning person. I like to stay up late and wake up around 9 or 10 am in the morning. But tomorrow I will have to wake up at 5:30 in the morning so that I can get a shower and get dressed all for a doctor appointment that doesn’t really excite me. However, go I will! I will be seeing my Pulmonary Hypertension doctor and praying that I don’t have to do the 6-minute walk. My husband walks with me because he’s the one who carries my portable liquid oxygen tank. If I had to carry it, I would not get good results on the tests.
The day before I go to this doctor, I start getting stressed out and worked up to the point where I just want to call and cancel the appointment. I know better not to do that… sure.. but I still feel that way because…. gosh darn it… I’m so tired of going to doctor appointments. But I will persevere and be the trouper that I am. My husband’s famous quote when I get this way is: “You can do it!” Sure I can do it but does it mean that I have to like it? lol!
I have been in such a writing mood lately! Isn’t it great? I even made some Vistaprint “business cards” representing this blog. I intend to hand them out to people who approach me asking about my oxygen. Many of them know of someone who has oxygen needs. So, I just want to offer them a way to learn more about using oxygen if they are a first-timer or if they are just curious.
This weekend was so fun but very tiring. My older sister came down with her nearly 3 year daughter and my husband and I got to babysit for about 4 hours. There is NO way I could have babysat on my own. I don’t have enough energy stored away for that kind of activity. My niece is one bundle of energy. My sister and her family stayed the night with us which was a blessing because it’s hard for me to travel to visit with them. After they left to go home, I crashed hard! I think I napped for 4 hours. Then I got up to take my diuretic, potassium, Symbicort and Tracleer medications. When the diuretic cleared through my system (two whole hours later), I crashed again. I’m not ashamed to take a nap. I know better to ignore my body. If I didn’t get the rest I need, I tend to get too tired. If that happens, my body fights falling asleep and then I will be so messed up. I wouldn’t be able to fall asleep which can lead to respiratory distress.
I’d like to share with you a subject for one of my next postings that is dear to me. It’s important to realize that the closest people in your life (spouses, parents, or significant others) are going through challenging times while living with someone who has physical limitations. They may not walk in your shoes but they have their own unique challenges as they live with or are related to you as they try to understand what you go through on a daily basis. With the next blog posting, I’d like to let you know how my husband copes with my health condition. We can’t ever forget about how their coping is important to those of us who have health problems as well as themselves. I’ll do my best to talk about it. It’s a difficult subject but it’s one that needs to be out in the open. Both for the shoe wearer and the one who cares for them.
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It’s amazing how much work goes into having a fun life. But it’s still very worthwhile. I try very hard not to schedule anything, especially doctor appointments, on the day of my oxygen refills. The company who refills my “Liquid Oxygen” is Lincare and they are generally very good with working with my doctor appointment schedule. There are times where I must schedule a doctor appointment on my oxygen refill day. In those cases, I either arrange for the oxygen driver to come a day before my scheduled refill day or just come a little earlier or later than my doctor appointment. Either way, it means an awful long day for me.
Scheduling my life around my oxygen needs is a constant chore. I’m always calculating in my head about how much oxygen I have in my portable liquid oxygen tank versus how much time I can play before needing to refill my portable. If I choose to go to a movie or a hockey game where I’m sitting down in a controlled environment, I can usually turn my oxygen down a liter (4 liters/min). However, if I’m walking around or talking a lot, I’ll need 5 liters/min. So, for example, I’ll walk into a movie theater using 5LPM and then sit to watch the movie on 4LPM. How much time does that give me on my portable? Well, how long is the movie? I know it seems a lot but it all factors in. Will I make it back to my vehicle where my 75lb reservoir of liquid oxygen is so that I can refill my portable tank if I’m going somewhere else after the movie? If I’m alone, will I have the energy to even refill the portable myself? Or will that just end the day and I’ll have to breathe straight from the reservoir and go home to rest?
I’ve had some scary moments though. I’ve actually locked my keys in my vehicle. Not cool because my purse was in there too. I had to go back into the place where I was at and ask to use their phone to call a locksmith. They had to be at my vehicle fairly quickly. I tried to be very kind when I explained why I needed them there quickly. ‘I’m on oxygen, I have X amount of time before I run out. If you can please send someone quickly, I’d really appreciate it.’ Sort of thing. Talk about having a panicky moment there! Yike!
I have AAA now which gives me a sense of relief and confidence when I travel. I’ve had a blow out in the middle of what seemed like nowhere. I called AAA and gave them a guestimation of my location and they had a representative out to help me within 25 minutes. He was a VERY nice older man who changed my tire and followed me to a gas station where he double checked my spare to make sure I’d make it to my destination. The number one priority when traveling is to have a cellphone and then using that cellphone to always let someone know when you leave your home, when you stop for a restroom or food break, when you get back on the road and finally when you get to where you are going. I check in with my husband at all these times via text messages. I also check in with whomever I’m going to visit. Checking in with my family is critical in allowing me to travel.
Life on oxygen is a challenge… sure… but it is better than the alternative. Am I right? Or what?
I am constantly looking for ways to travel with Oxygen. I have a very limited way to travel but others who use oxygen can hop on planes, trains, cars and even on cruises. How do you arrange oxygen on a cruise?? Well, I found a website called Sea Puffers Pulmonary Cruises & Vacations who cater specifically to oxygen users. I’m truly intrigued by this possibility! Unfortunately, my husband gets extremely sea sick. So, no cruises for us! I’d love to try a train vacation though. Wouldn’t that be awesome? Who has done either types of vacations? Let me know your experience while taking oxygen on your vacations.
There are a limited amount of oxygen providers who actually service nationwide. One that I know of is called Lincare. When I go on roadtrip, I use Lincare since they are located nationwide and they are the ones who provide my liquid oxygen. You just need to give them at least a 2 weeks advanced notice with your itinerary and the places where you think you will need oxygen refills. They arrange for the Lincare refills in those areas and it gets billed as if you are at home getting refilled. I have no cost out of my pocket for my liquid oxygen needs. It’s great and personally, I feel like this is how it should be for the quality of life that I deserve.
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Before the doctor would even put me on Tracleer, I had to do a lot of medical tests. I went to see doctors who specialize in Pulmonary Hypertension. To go to this appointment, my husband and I woke up at 7:30am to get there at 10am and we didn’t get home until 6pm that evening. It was a really long and tiring day.
My checklists of the tests I had to do are:
Blood work including tests for HIV and Liver function
Artial Blood Gas
Complete Pulmonary Functions testing
Chest CT scan
Overnight Oxygen Saturation monitoring
Right-side Heart Catherization
I think that about covers it all. They wanted all this done within the next two weeks of that doctor appointment. I was so nervous about the heart catherization. Though I’ve had them before but never while awake and as an adult.
For me to receive Tracleer, the doctors filled out a request form of some sort and submitted it to my insurance to see if they would pay for it. Remember it costs between $2000 to $5000 a month for this medication. Had the insurance not paid for the Tracleer, then the doctors would help to find programs who offer assistance, some based on how much of an income you have, to decide on how much help you may receive. First, I would have had to go through the assistance program from the pharmaceutical company who manufactures Tracleer. If, for financial reasons, I did not qualify, there was the next step to take: Caring Voice Coalitionempowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support.
Luckily for me, my husband’s insurance decided to pay for it. Before I had even completed all the above tests, I had my first bottle of Tracleer already. I was so surprised that everything was going so fast. I didn’t even open the package of the Tracleer because I hadn’t even finished with my tests first. The doctor said that we would talk about taking the Tracleer after the test results come in.
I have been on Tracleer since 2006. I have had to go in MONTHLY for a blood test to check on my liver at a local lab. Over the years of taking Tracleer, I haven’t had any liver problems but I feel that I’m not breathing better either. The reason why I continue to use it is because when I have my annual heart catherizations, the medicine is proving that it brings down the pressures within my heart and lungs which is a good thing. I just wish I could get the “More Energy” benefit that most others seem to get from taking Tracleer. I guess I can’t have it all, huh?
The following steps for using an inhaler is the technique for which I apply when I need to use one. I’ve had many compliments from doctors while they watch me use an inhaler. Now, I want to share with you how I use one.
Remove the actual metal cylinder that contains the medicine and make sure the plastic device is clean. If it’s not, run it under hot water and then dry it thoroughly.
Place the metal medicine cylinder back into the plastic device and shake vigorously for a few seconds.
Place your mouth around the mouth-piece completely, making sure there it is air tight.
Tilt head back slightly and breathe all air completely out and hold your breath a couple of seconds.
As you push the canister down within the plastic device, slowly inhale taking in the medicine straight into your lungs. Be careful not to get your tounge in the way.
Hold your breath for the next few seconds to allow enough time for the medicine to enter the blood stream.
Slowly exhale at a steady rate, hold your breath for a few seconds and then exhale.
If you require a two puff dose from your inhaler, wait for a minute before repeating process once more.
If you have problems using the plastic device directly, you can use what is called a SPACER which is a 6 inch plastic tube that is fitted over the mouth piece of the plasitic device. You would then place your mouth around the end and then press down on the canister, allowing the medication to flow into the spacer tube. Then you would inhale the medicine from there afterwards. This is usually beneficial for those who have weak lungs or for children.
This is a machine that pretty much saved my life! I can no longer sleep without it. It’s called a Bipap machine. I wear the mask over my whole nose and the machine forces room air mixed with oxygen into my lungs and then only allows me to exhale a small amount. This keeps my lungs filled with air at all times. I started using this machine in 1993. The models of this machine has greatly improved over the years. Mine has a small memory card that when the doctor pulls it out (It looks like a credit card), he can use his computer to read how much I actually use the machine. Last week, the doctor looked at the card and it showed that I use my bipap on average of 12 hours a day. Granted, some days I use less and some days I use more due to not feeling well. This is a pretty neat machine. On the front of this machine is a water reservoir that acts as a humidifier. The water is warmed (if you want to turn on the heater) by the plate that the machine sits on. This comes in handy during the winter time when the air is cold. It will warm up the air that flows through the humidifier before you inhale. That really helped when I had bronchitis last September.
When I first started using the bipap, my husband had a hard time looking at me. He was a little scared because this was yet another step in my health declining. The mask wasn’t a very sexy thing to wear to bed.. I must admit. But, it gave me back my energy during the daytime. I could sleep at night without feeling like I was falling into a deep dark hole and not able to wake up. Before using this machine, I would nearly stop breathing and my CO2 went sky high. My breathing was so shallow that sleeping with just my oxygen on wasn’t enough anymore. I had to use the bipap.
It was really hard to get use to the force of air going through my nose. At times, it would blow out my sinuses and make me extremely miserable. Other times, I have trouble with stuffed up nose when I lie down to sleep.