18th Infusion

August 29th marked my 18th infusion. I can’t believe that it’s been 18 sessions already. It seems like only yesterday when I started my infusions. How time flies.

By this time, we’ve got the infusions down to a routine already. There hasn’t been much hiccups of late. It’s been smooth sailing for most of the sessions that we had.

I guess now our only major problem is getting a line in for the infusion. I’m a moderately difficult patient to get a line in. It usually takes several tries for them to get it. Add to that that it’s been 18 infusions so some of my veins are already bruised and can’t be used for the time being.

My left arm is usually easier to get a line in. So for the past few infusions it’s always been on the left arm. This time though we got to use the right arm. It took several tried but we got it in.

The session went well except for a slight elevation of my heart rate during the beginning. This couldn’t have been due to the enzyme coz we still haven’t gotten the enzyme in when my heart rate went up. A few minutes after it stabilized and all went well.

The highlight of this session was the visit of Dra. Padilla. She’s one of the lead doctors for the IHG (Institute of Human Genetics). We discussed our presentation for the LSD conference in Japan this September. I’ll be doing a phone patch together with my mom to talk to the doctors during the conference. We threw around some ideas about what effective message to give.

We also discussed my transition from the EAP (Expanded Access Program) to the ICAP (International Charity Access Program). With the FDA approval of Myozyme, Genzyme is transitioning all of its clinical trials and other programs to commercial ones. Either through HMO, Insurance companies, private funding or programs such as the ICAP.

I must admit I was worried when I found out the news. As much as I’ve prepared myself for the eventuality that I might need to stop getting Myozyme because the EAP has finished, it doesn’t actually hit you until it’s there.

However I was reassured by my doctors that they don’t see any problems with the transition to ICAP. Let’s hope so.

Infusion Reloaded (17th)

I’m back on track with my infusions! Hooray for that!

I finished my 17th infusion today. It went really well. My body cooperated and we had no problems today. I missed my doctors after a month of not seeing them. I tell you, it’s always a pleasure to go through the infusions because of the great people I spend time with. It’s always fun to talk to my doctors and nurses.

My room this time was really nice. It had new furniture. Well ok, not as nice as most private hospitals here but it was good enough.

After skipping an infusion, I don’t know if it’s just my imagination or it’s really the effect of the enzyme but I do feel different. The past week I was feeling tired and sluggish. I felt as if I have no energy. I would wake up still feeling tired. After receiving the infusion today I feel much better. My body feels a bit more lively. Is it just imagination or the effect of the enzyme? I’m not reall sure. Some of the patients I’ve talked to said that even if they skipped an infusion they really don’t notice any difference. Oh well.. The good thing is I’m feeling good again. I hope it continues.

Infusion Setback

I suffered my first major infusion setback ever since starting the ERT. As I said in one of my previous post’s “Infusion Postponed”:http://www.fightpompe.com/article/89/infusion-postponed I got sick with some kind of bacterial infection. This resulted in a cough and fever. I was sick for almost a week. Not a good feeling. I hate being sick. Especially if it affects my respiratory health.

I thought that my infusion will only be postponed and that I can take it this week. Turns out not quite so. I had to skip this infusion as well. I’ll be resuming my regular infusions next week. The reason being, if I get my infusion this week, I have to skip my regular schedule next week because they can’t give it in succession. I’ll be waiting another 3 weeks to get back into schedule. I’m alternating with other patients who are also receiving ERT although for a different disease. Thus I have to stick to my schedule.

I told my doctor I’d be more comfortable skipping this one so I can go back to my regular schedule sooner. I also didn’t think it’s a wise decision for me to go to the hospital this week since I just recovered from my bout with the infection. My immune system might still be low and that I might catch something while at the hospital. I decided to play it safe.

So there, I missed an infusion session… From all the people I’ve asked there doesn’t seem to be a huge difference if I miss this one. I should be ok.

Infusion Postponed

I suffered my first real setback since starting my Myozyme infusions. Last Sunday I was brought to the E.R. at around 6:30 p.m. I was having trouble coughing that afternoon. For some reason I couldn’t expel the phlegm in my lungs. I was able to do this the past few weeks with relative ease as compared to 6 months ago. I don’t know why it was harder that time. It came to a point where I was having trouble breathing already. I asked to be brought to the E.R. before it got worse. I wanted them to suction the phlegm out.

We arrived at the E.R. and got looked at by the attending doctors and nurses. I don’t know if it’s just because they rarely see cases like mine or maybe my situation wasn’t really that serious but they sure took awhile to start suction. They asked a lot of stuff first. All I really wanted was for them to suction it out since I couldn’t breathe. They eventually did and I felt better. I want to thank the nurse who suctioned it. She did a good job and was very warm and friendly.

The doctor asked for a blood test to rule out an infection. At first I didn’t want to because it was a normal occurance for me to get a bit of phlegm in the mornings. Usually after I cough it out, it’s over. To be on the safe side, they wanted to do it. Turns out that my segmenters were high, suggesting a bacterial infection. So they prescribed some antibiotics. I was sent home at close to 10 p.m. Yeah I stayed there for that long.

The next morning, my mom called my attending physician. The one who administers Myozyme to give her a briefing on what happened. She said that the protocols for the infusion stated that we had to control the infection first before continuing with it. So that was it. Infusion postponed. Simple as that. I didn’t want to argue since they’re only looking after what’s best for me.

I started my antibiotics Monday. That will last for 5 days. If after that period I feel better and my tests are ok, we continue with the infusions.

Please pray for me that I’ll be able to continue my infusions ASAP. I hate missing infusions. I hate being sick even more. Especially if it’s pulmonary related.

16th Infusion

I have to seriously come up with better titles for my infusion entries..

Anyway, on with the details. It was my 16th infusion. Things pretty much went on along as they usually do. My dad wasn’t able to go with me though. He’s currently out of the country for work. So it was only my mom, aides and myself that went to the hospital.

Funny thing though… After all the media attention I got lately, some people at the hospital know me now. It’s kinda nice, weird, funny all rolled into one. The porter who took our things up to the hospital room knew who I was. He chatted with me and said he saw me on tv, etc… I was flattered. He said that he really waited up for the show when he saw the commercial promo for the show.

Thins pretty much went on the as they usually do. I’m really getting the hang of this. Much of the nervousness I experienced before is now gone. I still get jitters some time with certain things but for the most part I’m good. So much so that after the infusion, when the nurse was about to take out the I.V. line, I asked her if I could be the one to pull it out. That’s a first! I used to shut my eyes when they’d insert the needle. I couldn’t bear looking at it. That goes the same when they’d take it out. Now I’ve gotten so used to it already that for this infusion I was the one who pulled out the I.V. line afterwards.. Cool!

The whole infusion went well. No problems whatsoever. I was able to finish on time.

The highlight of this visit though was the fact that I was able to see the rehab doctor already. She gave me some things I need to do and had a P.T. go in and have me assesed. An O.T. also came in to measure my foot ang my left finger. I need some braces done for my foot ang my left finger to help prevent deformity. Due to muscle weakness my ankles are starting to deform. My left thumb is also getting worse. Hopefully the braces will prevent them from getting worse till the time I have enough muscle strength that I won’t be needing the braces anymore.

So all in all, this infusion went well.

15th Infusion

The 4th of July marked my 15th infusion of Myozyme. As each infusion passes I’m amazed at how far I’ve gone. It seems like it was just yesterday that we started the 1st.

I don’t really know what to write anymore being that each infusion runs pretty much unventful. Don’t get me wrong, I like it that way. I’m grateful that I have nothing “eventful” to write about.

The 15th started out pretty much the same. Checked in the hospital the night before. Oh, for the first time we repeated a room. For the past fourteen visits we’ve managed to get assigned a different room. The 15th marked the first time we repeated a room. Hey, it was bound to happen.

I guess the highlight of the night was the food. We’ve tried a lot of fast foods restaurants already and was getting bored. Thankfully I saw the flyer for Mexicali. We tried that. Mexican food… yuuummm..

The infusion day started out pretty well. Got up at around 7 a.m., we ordered breakfast. I had pancakes and sausages from McDonalds. Infusion days usually are times that I get to eat fastfood. I really don’t like hospital food. I just can’t stand it. I feel bad enough as it is being in the hospital, then it’s compounded by hospital food. Not good…

Dra. Lani came back from her vacation. That’s always a good thing. I like her a lot. No.. not in that way. I like her a lot as a doctor and person. She’s always cheerful and such a nice person to be around with. I look forward to seeing her during infusion days. Don’t get me wrong, that goes for my other doctor too. I love seeing her as well. It’s always a fun time with them around.

We started a bit earlier than usual. Although as always it took a few tries to get the I.V. line in. If you look at my hands now, you’d think I was a druggie. From the countless needle marks on my hand. Let’s see, 15 infusions and on the average it takes about 2 tries to get the I.V. line in, that’s around 30 needle marks. Luckily not all of them have scars. Some have disappeared already.

We finished around 2:30 with the infusion proper. I had lunch and spent the remaining time chatting with the doctors. We also brought cake for Dra. Estrada since she celebrated her birthday the week before. It’s the least we could do for her kindness and excellent care.

We left the hospital around 5:30 and was home before 7 p.m.

A great visit as a whole. No untoward incidents, a nice quite and fun visit.

14th Infusion

I just finished my 14th infusion and on my 6th month of ERT. A milestone.

The infusion went fairly well. A big change though is that one of my usual doctors was on leave. Leaving the lead Dr. by herself. Although she had a new fellow coming in, the fellow didn’t participate much as she had to attend to other patients.

I was touched because the doctor on leave called up to check on me. She said that she was used to seeing me every other tuesday so she decided to call and check how I’m doing. See that’s one of the things I’m really thankful for. I’m working with great people. Not just great doctors but great human beings as well.

As each infusion goes it’s getting harder to find a vein to stick the I.V. in. Some veins can’t be used anymore. Although I’m not worried there’s still a lot to stick the needles in. It’s just that it won’t be on my hands anymore. It took three tries today to get the I.V. in.

The infusion itself went smoothly. Not untoward incidents and I was able to leave the hospital a bit early.

So nothing much to write about the infusion…

13th Infusion

It didn’t help that I had my 13th infusion on June 06, 2006 or 06 06 06. I’m not normally superstitious but when it comes to matters of health or something like it, I’d like all things to be on my side. So imagine my nervousness on infusion day…

Well all in all it went well. My heart rate was up before starting the infusion but it was due to the fact that I had trouble.. well, going to the bathroom. After awhile my heart rate went back to normal. We were able to go through with the infusion without a hitch.

We ended a bit late though since there was a delay in mixing the enzyme. Nothing major. The pharmacy people had a meeting prior to mixing the medicine and couldn’t start on time.

After the 13th infusion, I must say there has been improvements. Small, very small but I know it for a fact. I can move my left arm slightly better. My neck muscles are also getting stronger.

So we’re halfway through the year. Things are looking ok. I hope that the next half is even better.

12th Infusion

One dozen infusions.. Wow. How time flies. I came back from the hospital last night for the 12th infusion. The interval between the 11th and 12th was shorter this time due to the adjustments we had to make on the 11th infusion.

The night before was uneventful like most, so I won’t bother writing about it anymore.

I was waiting for my doctor to start the infusion. I was chatting with the private duty nurse and my aides. I was also alternating watching basketball on tv. Spurs vs. Mavs (Mavs won to advance to the west finals). My doctor walks in the room. Trailing behind her was one of the residents I had a crush on. I kept on with the converstation I was having trying not to notice her. I didn’t want to seem surprised or eager to see her.

As fate would have it, the resident was the one who inserted the line. She did a good job. One shot deal. The line was inserted with one try. After that she left to tend to other patients. My regular doctor was perplexed as to why my heart rate was up. She was looking at the cardiac monitor intently. She asked me if I was ok and if I was feeling bad or something like that. I told her no. I pointed out to her that my heart rate was probably up due to my crush… Hahaha.

Anyway the whole infusion went well. No major problems of hiccups. At this stage I’m still quite nervous. I’m not sure why. Maybe because to me every infusion should be taken seriously. I shouldn’t be complacent and take things for granted. This is after all still a very new treatment and all the side effects haven’t been fully documented.

I thank God for days like this when all goes well. Looking back, after 12 infusions I must say I’m doing better. Even if it’s marginally better. Better is still better and that is good.

Fight Pompe!

11th Infusion

This should have been posted a long time ago, seeing that I’m off for my 12th infusion tom.

My 11th infusion has been the most different so far. Instead of having it on a Tuesday as I regularly do, I had it on a Thursday. The main reason being that I had to attend my grandfather’s funeral ceremonies. He wasn’t buried though. He was cremated.

So I checked in Wednesday night. It was the longest check-in period we’ve had to go through. For some reason everything didn’t go well. My dad was really irritated. He was the only one who came with me since my mom had to take care of other things related to my grandfather. Anyway we were finally able to check-in past 8 p.m.

The infusion day didn’t go as planned either. The resident who inserted the I.V. line couldn’t do it with one go. She tried twice and failed both times. She got another Dr. to do it. The other one did it in one go. To be fair, the first one was a pediatrician so I have to cut her some slack. The other one was an internist so he’s used to adult patients.

The infusion pump almost fell to the floor. It was a good thing my Dr. was alert and caught it. Whew! Otherwise our hospital bill would be a tad higher..

All things considered the infusion still went ok. I find that it helps when people keep talking to me. It takes my mind of the infusion process and thus calms me. I sometimes get nervous and my heart rate goes up as a result. I can really be nervous at times..

I’m a creature of habit and I guess I noticed all the bad things that happened as a result. I always want things done in routine. So the change of schedule and pace made me worry a bit more.