BiPap Crisis Over I Think

Well, it’s been a really long and weary week. I haven’t been able to sleep well the past week. I was literally like a zombie during the day. Half asleep and half awake. For some reason the good machine I’ve been using is still giving me trouble sleeping. I still wake up with a headache and feeling really really tired. I’m not sure if it’s the pressure setting or if this machine isn’t calibrated properly. The display indicator tells me that the pressure is set to the one prescribed to me. So it should be fine but it’s not.

The broken machine has finally been fixed. Thank God! During times of crisis, a person sometimes thinks that God abandoned him/her. However what they fail to see is that maybe God is just working his miracles in the background. Looking back I realized that this is so true in this instance. Let me give the reasons why.

1. *Helpful Technicians* – God sent me really grate and helpful people during my time of need. It was a long weekend and the service center is closed. But as things would have it, there was a sleep lab open and the GM was there. He’s also an experienced technician so he looked at my machine. He was the one who gave the initial diagnosis as to what the trouble was.

Another technician came on Monday to our house. It was a holiday that Monday due to elections. Yet he still came. This technician was the one who remedied the machine well enough to be usable as a backup. The machine could at least be used as a backup till the parts could be replaced.

I also had another technician do phone support. He wanted to come but his son was in the hospital. Yet he provided phone counseling. As luck would have it, his son was confined in the same hospital I go to. I had a technician in the same hospital the night I spent there. So if anything did happen help was there.

2. *Excellent Support* – The Respironics machine I was using has great support. Although the regional service center is in HK, still they provided excellent support. They were able to fix my machine in two hours. A rush job which they accommodated given my circumstance. They also replaced the defective parts under warranty.

3. *Financial Support* – Given my situation I really need redundant systems in place. I don’t live in a country like the United States wherein machines like this are much much more common place and it’s easily rented. So redundant systems are a must. Even if the broken machine is fixed, I still decided to get a new one to serve as a backup to the backup. The problem was it cost an arm and a leg.

Not to worry. There are very kind people who live in this planet of ours. First off, thanks to David from United Pompe Foundation. I applied for a grant from the UPF to fund the purchase of a new machine. They were able to give up to half the cost of the machine. That’s a big chunk of change. So if any of you guys in the United States feel like donating to a worthy cause/foundation please consider the UPF.

Apart from that a lot of people were eager to lend a hand. My uncle and aunt in the U.S. were ready to extend financial support but I had to politely decline this time since they already helped me a lot. My uncle here in the Philippines helped me out with the paintings I’m selling. Christine, a friend of mine and her family was ready to help with the financial costs but I told her I had already completed the finances for the machine. Still the thought was more than enough. My cousin who’s willing to bring the machine home from the states.

4. *My Family* – Last but not the least my family. My dad, mom and brother all made sure that I would be ok through this problem. My dad went through all the trouble to hand carry the broken machine all the way to Hong Kong and have it repaired there, bring it back to Manila all in one day. He’s also helping me out with the finances for the new machine. My mom who helped me find the technicians and other solutions for this crisis. My brother for taking some of the slack at work. Plus a whole lot of other stuff.

These reasons make me feel that I’m really blessed and that God has used them to make sure I get through this crisis of sorts.

So at this time of writing, my machine is fixed. A new one is also on its way to my uncle and aunt’s place in San Francisco where my cousin is staying. By June 2 the new machine should be here with me and I should have three machines to use.

I’m now praying that the other machine here with me now doesn’t have any problems. When the new one arrives I plan to have this one serviced, cleaned and calibrated.

God, if you’re reading this, thanks. You rock!

32nd Infusion

I got my 32nd infusion last May 15. The actual infusion day/process pretty much went the same as it usually does. But there are events and circumstances prior that were a bit different.

The night before, we checked into the hospital. We arranged for a rental BiPap machine to serve as a backup to the one I was using. They didn’t have the same model as the one I’m using. Instead they had the older BiPap S/T available. We went ahead and rented that. Even if I couldn’t sleep anymore with that type of machine, at least I could be kept alive with it. Losing sleep is much better than not being able to breathe.

The thing is… when they brought the machine to the room, the guy didn’t bring a calibration machine. He assumed that the machine would give the pressure that the dial was turned to. Granted that’s the case usually. However since this is a rental machine, we bought bacteria filters to use with it. I wasn’t sure who had used this prior and if they cleaned it well. I didn’t want to catch a disease from the machine. The downside about the bacteria filter is it obstructs the airflow quite a bit. So the settings that the machine is set to isn’t accurate anymore. The only way you’d get the correct read out now is through a manometer, which he didn’t have. Oh well.. So I couldn’t use the machine. We still decided to keep it though just in case my good machine conks out.

My mom actually fainted due to that event. She freaked out because I couldn’t use the machine and she was really worried for me. If the good machine I was using decides to quit in the middle of the night, it would mean real trouble. She was ok though by the end of the night. We reassured her that it was usable and we just had to take out the filter.

Apart from that incident, everything else was pretty much quiet. We were able to start on time and finish early. I was supposed to have physical therapy after but I begged off since I had to come home early and wait for the technician to look at my machine again.

Ivan Acuna Paintings for sale

I’ve put two “Ivan Acuña”:http://www.ivanacuna.com paintings I have for sale. I got these as payment for services rendered from the artist himself. I would have liked to keep one of them but due to my current problems, I’m putting them both up for sale to raise funds.

These are abstract paintings that are perfect for interior decoration. In fact one of them is actually on my office wall but I need to part with it.

I was supposed to use the proceeds to fund my sabbatical from work to focus on physical therapy but given my current BiPap woes, I’ll use the proceeds for that.

The details are:

Painting 01
Size: 4.5 x 3.5 ft

Painting 02
Size: 4.5 x 4.5 ft

If you know anyone who’s interested I’d appreciate it. You can leave me a message here as to how I can contact you or the interested buyer. You can also email me at juan@sparkplug-studios.com

Here are thumbnails of the paintings. Click on them to see the bigger picture.

BiPap Woes, etc..

The past few days were ones that I’ve been dreading for quite some time. Ever since I’ve become dependent on my BiPap machine for my ventilatory needs, I’ve been worried when a day would come that It would break down. I’d been in serious trouble when that happens. It did…

However it’s not as grave as it sounds. Well sort of. Over the years I’ve been lucky enough that over the years I’ve been able to build up my equipment. From the original BiPap S/T that my family bought 10 years ago, I’ve accumulated a total of 4 machines over the 10 years. Sounds a lot right? It is and I’m blessed to have them. But there are some problems.

I own a pair of BiPap S/T’s and a pair of BiPap Synchrony S/T’s. The Synchrony’s are the newer models. I got the first Synchrony about 3 years ago and the newest one around 2 years ago. Both were courtesy of two very very kind aunts and uncles in the United States. They knew that my equipment was getting old and so they bought me news ones. The other BiPap S/T was also given. This time through my good friend “Maryze”:http://www.pacesworld.com. She had known years back that I didn’t have a backup machine. So she asked her home care provider if they had one. The home care provider had a used but in good condition just sitting on the shelves. They gave it for free. Talk about lucky huh.

Anyway, as great as four machines sound, my problem lies in the fact that the 2 BiPap S/T’s are very old already that it’s not working very well already. The oldest one I can just use when I’m awake. I can’t use it while sleeping since it’s not giving the adequate pressure I need while asleep. Same goes for the slightly newer one. I can’t seem to sleep with it.

As for the two Synchrony’s for some reason again, I can only sleep with one of them. The one I use to sleep on a regular basis. I can’t seem to get to sleep with the other one. They’re both in the same settings and they both are identical models. Go figure. My intuition tells me that the software algorithim of the machine I use for sleep has got my breathing pattern right and the other one I use while I’m awake and seated is suited for seated ventilation. Thus when I lie down and try to sleep it’s not in sync. I’m not sure if this observation is correct. But that’s the explanation I can think of.

So with my luck, it’s the machine that i use for sleep that breaks down. Well 2 nights ago, I noticed I’ve been having trouble sleeping. I’d wake up in intervals. Gasping for breath. The machine is running and I can hear the motor but when I try to breathe it doesn’t seem to give me the pressure I need. I thought it was just me. So I tried switching machines. It was better I didn’t feel the gasping but I couldn’t sleep still.

For 2 days now, I’ve had a total of I think 3 to 4 hours of sleep put together. The rest is somewhere between awake and sleep. It’s been a rough two nights.

Again, with the luck that I’ve been having, It had to get worse on the weekend. The service center was closed. I had to make a lot of phone calls to see where and how I can get it looked at.

We finally ended up in the sleep center near our house. Luckily the technician who also happens to be the GM was there. He looked at my machine and he opened it up to check it. The verdict? The machine somehow got so hot that the coating of a pair of wires controlling the valve melted. The wires would touch sometimes and cause the valve not to open. Hence the shortness of breath sensation I was getting with the machine.

Long story short. We spent a good 6 hours in the sleep center. We also almost didn’t get the machine to work but the technician found a remedy to it. Parts for the machine isn’t available readily here apparently because very few Synchrony’s were sold here. I was really really worried by that time.

Buying a new one crossed my mind. The dealer had one here in stock I think. But the 200 plus thousand ($4000) pricetag stopped me. I didn’t have that much money to burn. I just hoped he could fix it. The prospect of not sleeping another night was terrible. My eyes hurt, my head is spinning and I really want to sleep. But not enough to not write this.

It’s been a tough day today. Please pray for me if you can. The search to get the replacement part starts tom. But oh no! it’s Sunday no work. Plus elections on Monday, no work again. Drats! Pray that the remedy for the machine holds up indefintely. I’ll also look into getting a new one. The cheapest I found was on the internet at cpap.com. It was $3,000…. Now to look for the money.

31st Infusion

My 31st infusion started a day early that what it was supposed to be. May 1 is Labor Day and as such a non-working holiday. It fell on a Tuesday which coincides with my infusion day.

Since it’s a holiday the regular hospital staff has the day off. Only essential staff and doctors will be on duty. So we decided to move it up a day. Instead of May 1 I would be having my infusion on April 30.

Like most infusions it went pretty well. Except we started a little bit later. The Rehab doctor stopped by prior to us starting and talked to me. We’re starting a new program and hopefully that would really help improve my condition.

The whole infusion went well. Things of note though were, this is the first infusion that my mom wasn’t there, my doctor felt ill while we were having our infusion, we started a little bit later than usual. Apart from those things were pretty much as they usually are on any given infusion day.

I really thank God that so far so good.

Oh, my doctor said that the next ICAP approvals were already a done deal. Hopefully we get the next batch of enzymes before this current supply runs out.

Why I’m Not Voting For Cesar Montano

I’m sorry for this post about local politics. I just had to say something about it. I’m also sorry because this is my first post after being absent for awhile. But I just had to say it.

First things first, I don’t know Cesar Montano personally. I also don’t have anything against him as a person. That being said, here’s why I won’t be voting for him this coming elections.

I was watching or as of this writing still watching a show on GMA 7 wherein they have as guests candidates for senator. There’s a part of this show wherein the candidates will choose from a random set of questions and answer it in the span of 1 minute.

Cesar Montano picked a question given by another candidate. It said something to this effect, “How will you ensure that the coming elections would be a clean and honest election?”. He started his answer by saying we should all pray and then went on to ramble about things totally unrelated to the question. When the time ran out he didn’t answer the question convincingly.

If you’re running for a position such as a senator and your answer to a question like that is “Let’s all pray”, maybe we should. We should start praying that you don’t win.

I’m believe in God and in the power of prayers. I believe both are very powerful but as a senator you can’t rely on just prayers and leave it at that. You need to do your part.

I’m just not convinced that Cesar Montano has what it takes to become an effective senator. He’s a good actor and probably a good person as well. He should stick to doing what he does best.

Should he still want to pursue becoming a senator, then educate yourself better on it. Take more classes related to legislation and such. Don’t just jump in because people wanted you to run.

Ironically another actor said this about becoming an elected official. If I’m not mistaken it was Dolphy, the Philippine’s Comedy King, who said something like “It’s easy for me to run and win in the elections, but what do I do after?”. Now he’s smart. He knows becoming an elected official is not his thing. He didn’t study or prepare for it. Although he can win, it’s not enough. He knows he as well as the country is much better off if he kept doing what he did and that’s making us laugh.