Living with Scleroderma

this is nothing but a curve ball

Pulmonary Test

On February 26th, I took my 4th Pulmonary Function Test.

It’s funny co’z there was only 4 people working in the clinic and I seem to have worked with every single one of them already. I found out the first guy that worked with me retired and got replaced by a new guy. So maybe I’ll meet him in a few months, LOL.

Taking tests always gives me some anxiety. Unfortunately, anxiety causes me to cough. And coughing messes up with my tests. I decided to take my time getting ready today, not straining myself to not start a coughing fit. Hubby and I even left extra early so I wouldn’t have to rush to my test.

Here are the results of my PFT tests
FVC is the Forced Vital Capacity
From March 2012 58%
to Oct 52%
and Feb 49%

DLCO Diffusion capacity for Carbon Monoxide
From March 2012 50%
to Oct 39%
and Feb 35%

Healthy FVC is 75% DLCO is 80%
I was told that 40% on either one qualifies me for a lung transplant.
However, since I don’t quite need oxygen yet, I’m actually still good.

Even though my results are declining, it’s pretty much still the same.
They just want to do more follow ups and see what I would need next.

For the meantime, I’m quite relieved. It seems like the cytoxan worked for me! Yay!

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Chemo #10

Chemotherapy #10 was fine on the actual day of treatment. I figured I was getting used to the medication. I was thinking I’ll have my typical tiredness and fatigue. And I was already expecting a slight nausea.

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Unfortunately, I didn’t get my usual 2 days of fatigue, and a bit of nausea. Instead, I was tired almost everyday for 2 weeks with nausea and vomiting the whole time.

My doctor said that the cytoxan is probably kicking in. They’re happy that the medicine is working in slowing down the progression of Scleroderma in my lungs, however they are concerned about my side effects as well.

My hair also started falling out. I wasn’t having this bad of side effects until this last chemo session so I freaked out a bit. I’m very blessed that everyone around me has been such a great support system. My family and friends keep reminding me that it’s almost over and my hair will grow back anyway =)

For my last 2 cytoxan treatments, my doctor told me that they will lessen the dose enough to hopefully decrease the my side effects. I’m crossing my fingers for this to work.

It’s going to be a busy month. I have a lung scan tomorrow, possibly another one the day after. My Chemo #11 is next week. Then, I have my 1st Rituximab infusion scheduled the following week. If I don’t get an allergic reaction to Rituximab, I’ll get another infusion 2 weeks later.

I’ll keep you guys posted! Thanks for all the thoughts and prayers!

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Chemo #8 and #9

Chemotherapy #8
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Chemotherapy #9
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I thought i was starting to get the hang of my cytoxan treatments. I was only feeling nauseous for a couple of days after the infusion. However, my 9th infusion actually threw me for a loop. I wasn’t as tired on the day of the chemo, as I normally would. The fatigue hit me the night of the 2nd day and I was nauseous and vomiting for about a week. I had an anti nausea medicine my doctor prescribed me but it makes me dizzy and makes everything I look at blurry. I couldn’t take it since I was still going to work. I had to tolerate the nausea until my doctor prescribed me another type of medicine.

We saw Dr. Furst again 5 days after chemo #9. He looked at my last PFTs and said that my results look “ENCOURAGING.” Yes, he said encouraging!

Some days are still better than others. And I think the cold weather is affecting my cough, reynauds and joint pain even more, but I’m either learning to manage them more or just ignore them.

I don’t like days when I just feel so tired or my body is so stiff or in pain that it’s so difficult to get up. But for the most part, I look at my kids and see that they still need me. They need me to take care of them, play with them, teach them and spend time with them. And I can’t do that lying down. I need to keep pushing myself a little bit more everyday to show my kids that this disease will not take away their time with me while I’m still around.

Anyway, Dr Furst and my rheumatologist agreed to put me on another set of infusions, just two more in between Cytoxan treatments. It’s called Rituximab. It’s another medication that is used with patients with Hodgkins Lymphoma that they say may help scleroderma.

Am I looking forward to more chemo and doctor visits? Ehhh not really, but I’m grateful that there are now more treatments available to help people going through a chronic illness like me.

I try not to live a normal life, but an extraordinary one!
You shouldn’t either …Normal is just plain boring! =D

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Chemo #6 and Chemo #7 DONE

It’s crazy that all of a sudden, our calendars are now filled with back to back doctor visits, tests and chemotherapy. Going to the hospital is so exhausting. I never thought I’d be going this much for myself. It’s almost rare to see a week without any activities pertaining to Scleroderma.

But for the most part, my visits and treatments are encouraging. Even some of the bad news don’t seem so bad when I realize that things could be a lot worst. And for that, I’m happy.

Chemo #7
Chemo #7

My last chemo was a little emotional. Not for me really, but for 2 other patients that I was next to.

The first one was an elderly man that was accompanied by his daughter and 2 grand daughters (probably in their 20s). They came in, a little loud, but they didn’t really care. I tried not to mind them. Besides, my meds were already kicking in so I fell asleep.

When I woke up, the old man was by himself. Then I saw him struggling to sit up from his chair. Hubby tried to help him up and called the nurse for him. As it turns out, he was already done with his treatment.

The ladies that accompanied him left him there, all by himself, so they can eat out. I felt so bad. I wouldn’t leave my dad or grandfather alone like that. I mean, there were 3 of them, they could’ve taken turns to eat while someone stayed to look after him.

Soon after his IV was removed, the elderly man walked away (probably looking for his companions). He came in a wheelchair and shouldn’t really be walking after treatment because he was probably a little weak and dizzy. I saw him pass by outside my room and moments later, I heard a loud thump. He fell and hit his head. A few minutes later, his daughter and grand daughters came back from eating and got upset at the nursing staff for not watching him the entire time.

I felt bad he fell, but it wasn’t the nursing staff’s fault. They have other patients to attend to. And He was already done. His family should have at least come back on time to take care of him.

Then, when I went to the restroom we were sharing with another patient, my heart sank when I looked at the floor. I saw pieces of hair all over the floor. Obviously it was a cancer patient that’s losing his/her hair due to chemotherapy. I’ve been blessed enough to keep my hair with treatment. But I can’t even begin to think how difficult it must be to lose your hair in addition to all the other stress and pain you’re going through when you’re sick.

My heart went out to that other patient and I was just quickly reminded of how much blessed I am even during this time.

Things are not perfect right now, but that’s OK. I’m learning to praise God in all my circumstances. Because all these trials don’t compare to His amazing plan in our life.

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Chemo #5

Chemotherapy #5 was a success! Just one more, hopefully, and I’m done.

It’s weird, despite everything negative I’ve heard about taking chemo, mine hasn’t been too bad of an experience so far. I feel some weakness, dizziness, slight nausea and night sweats. And as far as the thinning of hair/ or losing hair, I barely notice any changes. I have been told that everyone reacts to treatment differently and the fact that I am younger may be the reason that my body is taking it pretty well.

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In any case, I’m grateful. Every time I go through chemo, I notice that I stop coughing for a while. And after chemo session # 5, I also noticed that I haven’t been having too much problems with my breathing. My doctor told that we wouldn’t know whether or not the chemo worked until after my 6th session.

I have another Pulmonary Function Test (PFT) scheduled in a couple of weeks. I’ll find out if my lungs have stabilized or at least if the progression of my ILD have slowed down.

Keeping my fingers crossed.

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Chemotherapy 1-4 DONE!

I just finished my 4th Chemotherapy of Cytoxan today. Just 2 more and I’m done.

People ask me why am I going through Chemotherapy. They ask me if I have cancer.

Scleroderma is not cancer. Chemo treats cancer by attacking the cancer cells. In my case, Cytoxan is supposed to help me with slowing down the progression of my condition.

With Scleroderma, my body overproduces (confused) white blood cells (anti-bodies) that are fighting my own body. This causes inflammation throughout the body and in my case, in my lungs. It’s the inflammation in my lungs that are causing the fibrosis.

The Cytoxan (aka Cyclophosphamide) is supposed to suppress the white blood cells and the inflammation in my lungs.

I forgot to post this photo from Chemo #2
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Then from Chemo #3
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and today from Chemo #4
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A lot of people are scared of Chemotherapy. I can’t speak for anyone else, but let me tell you my side effects from this treatment. I get hot flashes like crazy. I don’t sleep well (maybe with all the meds I’m taking as well). People say you lose your hair or experience hair thinning, I haven’t experienced that yet (but I’m always on a lookout for cute hairpieces ;P) Nausea and Vomiting? NOPE, I haven’t had that really. But the FATIGUE is unpredictable. I don’t know if it’s the treatment making me tired or my scleroderma. Either way, FATIGUE is something I’m trying to manage because I never know when it will attack.

On a good note, I get my COUGH free days up to 3 days after each treatment. It’s not a lot, but for someone who’s been constantly coughing everyday for 4 years, that’s quite an accomplishment.

I had to take a chest xray about a month ago and my Lung Specialist shows that my fibrosis was still progressing. My rheumatologist also read my last blood work and said the same was with my scleroderma. They say that the treatment takes a while to kick in the body and for the actual results (whether working or not) to show. So technically, i really have to wait until my last chemo and see if it did work for me or not.

I have another PFT (Pulmonary Function Test) scheduled in August. My Lung specialist tells me I’m close to being a Lung transplant candidate and the PFT will determine that. At first, I was a little excited for another alternative. Then when I got home and read more about it, I realized how dangerous the procedure can be. I’m not thinking about that now though. Tonight, I read some people online discussing how Cytoxan has helped and even improved their lungs. So we hope and pray that things can only get better from here =)

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Welcome to My Scleroderma Blog

Welcome to our fight against SCLERODERMA!

I was diagnosed with Scleroderma (Diffuse Systemic Sclerosis) on March 22, 2012

Systemic Sclerosis is defined as a chronic connective tissue disease that causes the skin and tissues of the body to harden and get swollen. It can cause damage to the lungs, heart, kidneys, digestive tract, muscles and joints.

Before this diagnosis, my symptoms have been constant coughing for 4 years and Raynauds. Raynauds Phenomenon is a condition that when exposed to cold temperatures, the fingers and toes result in discoloration.

When I first started coughing, I was pregnant with my daughter in 2007, so they really couldn’t do anything in fear of any procedure possibly hurting the baby. After my daughter was born, my primary care physician first thought I only had asthma. Then, I started seeing an Allergist as well, but my coughing never stopped.

I had a bad December last year and then a bad January. When February came, it just got worst. Walking for a long time and going up a flight of stairs was quite a challenge. Everything made me cough. I would have coughing episodes anytime from waking up to trying to sleep at night. My chest and back hurt so much from coughing so hard. I’m often very exhausted and lightheaded after each episode.

In addition, my legs, hands and face always seem to be swollen. I tried to stay away from salt, but it never just went away. I was also constantly tired and feeling sore all over my body.

Finally, my hubby requested a chest x-ray and they saw some abnormalities with my x-ray. At first, they thought I had walking pneumonia, so I went on antibiotics for a while.

On my follow up visit, I had another x-ray done and there had been no improvements since the antibiotics, so I was referred to a Pulmonary Specialist. She requested a CT scan of my chest, a blood test and a Pulmonary test.

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Then, the Pulmonary Specialist referred me to a Rheumatologist who then requested for more blood test looking for specific autoimmune white blood cells.

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My CT scan showed inflammation and scarring of my lungs. The blood test showed that I have a high number of white blood cells fighting against my own body causing the inflammation. The Pulmonary test showed that I only have 69% lung capacity remaining.

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I was prescribed to undergo chemotherapy (using CYTOXAN) to aggressively treat my scleroderma. I was scheduled 6 treatments, once a month and the doctor will review my condition my progression.

My first chemotherapy was on April 2nd. Everyone told me I might feel some fatigue and nausea. At the same time, I was also told that I may not feel too bad since the first treatment was a smaller dose than normal. Actually, it wasn’t so bad.

First day of chemo

I had slight nausea and fatigue, but aside from that, I stopped coughing for 2 weeks. It was such a relief that I actually forgot I was sick. All of a sudden, it seemed like the medicine wore off because my symptoms came back after the 2nd week. I was coughing all the time, my back and my chest was hurting. It was very difficult to breathe… again.

On May 2nd, I received my 2nd chemotherapy. Considering this was supposed to be a stronger dose, I was actually looking forward to feeling better right after the treatment. Unfortunately, I was only symptom free for about three days and then the coughing started again.

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I told my doctor and she requested for another chest x-ray. The results showed a progression of my scleroderma. She found more scarring on my lungs. I’m on Prednisone again to help me control my coughing and difficulty of breathing until my Chemo starts working in my body.

Today, I had an ECG (Echocardiogram) to check if my heart is doing okay. I have another doctor’s appointment next week and hopefully she can give me a reading to tell me how my test today went.

For now, I’m still dealing with coughing and a lot of fatigue, but I’m hopeful. And I’m thankful for my amazing family and friends who love and support us.

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