Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

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

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*

Advertisements

The date is set….for Tikosyn

Living On Oxygen for Life

The date is confirmed for going to the hospital to try Tikosyn. Sometime during April 26, I enter the hospital and supposedly walk out on the 28th as a new and improved heart patient.

My last stay at the hospital was in 2014 when the PH medicine, Opsumit and my heart medicine, Cordarone (which is what I’m currently getting off from), clashed inside my body causing it to become hyperthyroid. That was no fun.

I documented that hospital stay on my blog and you can find it here: Life’s little emergencies. I’ll try to document this stay as well.

I hope everything goes well in that my body can tolerate Tikosyn without causing me breathing problems. I have a lot to take to the hospital but I’m going to narrow it down to my Bipap and mask, some comfy clothes & toiletries, my phone & iPad and hope I can use both in the hospital room to watch movies and communicate with the world. I’m even thinking about taking a small stash of yarn. you knew that was coming, right?

My heart is starting to act up. I stopped taking Cordarone on March 28 and before that, I was already tapering it down slowly over a 2 1/2 week period. Right now it skips and aches often. I hope it doesn’t feel any worse than this because I still have 13 days to go.

It’s time to go find my Wonder Woman underwear because I feel like I’m going to need a little bravery in the hospital. *fingers crossed*

Hey, just to let you know, I have a Need a Hug afghan ready to give away if you want it. It will go to the first person who emails me at goredrider@gmail.com and tells me their breathing problem diagnosis. It’s totally free to you! Lots of love to you all!!

Problem? Fix it!

Living On Oxygen for Life

Stress..the final frontier..for which no man (or woman!) wants to experience. Did that even make sense because I can’t tell.. I’m too stressed out. Over the last three weeks, I have literally hit the maximum overload point in the amount of stress my little body can handle before I start feeling physically sick. Chest pain, heart beat skipping, and downright depression hit pretty hard. But, let’s not go there.

I played phone tag a lot last week trying to find out when my doctor can schedule me in his itinerary for trying Tikosyn. He finally got back in town last week. I called him last Monday to let them know… “Hey, I’m still here waiting on an answer..” I had to leave a message. I really hate phone tag. So I sent an email too. You know, just in case. I finally get a call back from the doctor’s staff saying they’ve been discussing my case and they think the doctor will have an opening to be available to the hospital for the 3-day stay requirement during the last week of April. I told her that I’ll be out of medicine soon and I’m already splitting the pills in half. Her answer was that I’d have to be off the medicine completely for 2 to 3 weeks anyway. Personally, I think we’re cutting it a little too close for my comfort. Between now and then, the doctor has other out of town conferences to attend. What will happen while I’m off Cordarone and I have a rhythm problem and he’s out of town??

Meanwhile, K and I have decided to track down and purchase Cordarone from Turkey so that I’ll have something to fall back on if my body can’t tolerate Tikosyn. It hasn’t arrived yet but it’s been shipped. *fingers crossed * that it’s the same brand name Cordarone that I’m currently taking.

Right now, I’m not feeling any bad effects of being on just a half dose of Cordarone a day. My heart is skipping a little but I’m ok with that. As long as it doesn’t get worse or something doesn’t cause a lot of stress for me, we hope I’ll do ok.

I really wanted all this settled before the PH Conference in June because I’m super excited to be going with K. I’ll be hopefully giving away my favorite Need a Hug afghan that I just completed. It really is lovely!

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

I’m facing a decision that scares the heck out of me.

Living On Oxygen for Life

Let me set the scene for you, if you will allow me. *grin* You know I love a good story, yet this one is a hum-dinger! About a week ago, I put in a request for a refill of my heart medicine. It’s the heart medicine that helps with my Ventricular Arrhythmias and it’s called Cordarone. Now, mind you… I can take BRAND NAME only because the generic drug, Amiodarone and Pacerone, causes horrible headaches. I’ve tried a multitude of other heart medicines back in 1993 but they all affected my breathing causing severe shortness of breath.

So, I wondered why, when I got the email from my mail order pharmacy, which said that my Cordarone refill has been delayed. A few days later I called the pharmacy and asked wha’s up… you know? *raised eyebrow* This isn’t something I can go without. They told me that the medicine is no longer in stock and they didn’t have a date of when it would be arriving. That set off serious alarm bells in my head.

I went into my bathroom where my Cordarone bottle is and looked at the name of the manufacturer. Pfizer! Then I searched online to find their phone number to give them a jingle on my telephone. You know, just to ask them, wha’ up? I mean… seriously! I explained my situation about this is the only medicine my lungs can tolerate and I really need this drug. (Honestly, I was starting to freak out.) The people at Pfizer were super nice. They even put me on hold to find out what the problem was but they did NOT come back with good news. In fact, it was horrible news. Cordarone, they said, has been discontinued. But hey, there’s still the generic drug. UGH! I explained to them that I can NOT take that medicine.

After that call, I immediately called my doctor, who is a Cardiac Electrophysiology specialist, to tell them what happened and to beg them for an earliest doctor appointment available which was Monday. I went to the appointment but not only did I arrive to the wrong office (they have multiple offices!) but I had to beg them on the phone to allow me to still come in to see them instead of rescheduling. Can you imagine how stressed out I was? I had only 40 minutes to get to their office which was in a different city and there was major traffic but I made it and in one piece! Yay me!

Ok, so I’m in the doctor’s office talking it up with an older man about his mother needing oxygen. I guess when people see me they just naturally start talking with me or I’ll give them a friendly smile and they we’ll just start talking. I hate sitting in a quiet place waiting to be called. I naturally want to talk. *shrug*

I was able to talk with the Nurse Practitioner (because the doctor was out of country for the next week) for nearly an hour and it turns out that the only medicine that I could switch to is… That’s right… Tikosyn (I was offered that about 2 years ago and turned down but now I have no choice.) which requires a 3 day stay in a hospital to start it. To start this drug, I will have to stop Cordarone for 2 weeks prior to starting Tikosyn. If Tikosyn doesn’t work, I’m screwed. My other alternative is to try to buy Cordarone from Turkey through a Canadian pharmacy to fall back on in case Tikosyn doesn’t work. I’ve tried to buy it in the past from Canada, but they sent me Pacerone instead. I’m super, super stressed out… I need brand name. I have 28 Cordarone pills left. K took the news as well as expected. I’m going to call my doctor tomorrow and tell her I’m going to try Tikosyn.

K and I remember the experience I went through back in 1993 with my heart skipping constantly and it was not a good experience. We are going to try to make the 2 weeks without Cordarone as “low stress” as possible. Stress really effects my heart rhythm.

My only thought yesterday was … I really hope K brings home some ice cream for me. I could really use some. He did. He knew I needed it. I ate the whole pint last night. And it was delicious! Who knew Twix ice cream could taste so good??? Ok that’s my update.

Hey don’t forget to donate to my Need a Hug Project fund! I can’t wait to show you the afghan I’m nearly finished with. The donate button is on the right!

[March 2016]

We bring you a Medical Update…

Living On Oxygen for Life

IMG_3990 Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*

Health Update..

Living on Oxygen for Life

Hello! I hope you read my last blog post and realized this is my health update. What’s crazy is that it seems like it’s been so long since I blogged last. What’s wrong with me??? My motivation has tanked badly but never fear. I am STILL here! I post on Facebook and Instagram. So, you can get a glimpse of my life that way. In fact, if you don’t have Facebook or Instagram, you can come to my blog and on the lower right side column you can see what I post in those two apps. I try to make it accommodating for those who do not wish to have FB or Instagram. I don’t want you to feel excluded. I love you all! haha! *hugs*

Ok Ok! I’ll get started already on my health update. Where should I begin? You probably already know that since August of this year, I have magically become Hyperthyroid. Don’t ask me how, because no one… I mean NO ONE knows for sure. One doctor says it’s from my heart medicine, the others think it could be hereditary through my father’s side. If it was caused by my heart medicine (Cordarone), I should be Hypothyroid which I am not. Before taking Opsumit, my TSH was teetering on the “Hypo” side and WHAM-O I’m Hyperthyroid. Confused yet? Yeah, join the club. *sigh*

So, for the last few months, I’ve been taking thyroid medicine. Cause you know that I love having to take just ONE MORE PILL! Oh wait, I take 3 of those pills a day. Ok Ok… 3 MORE PILLS a day! I had my annual physical last month and was thinking, hey the doctor can get all my thyroid blood tests done and all the other labs done all in one stick. Unfortunately, he only ordered the TSH and not the T3 and T4 labs. That’s what I get for assuming and not double checking with the doctor. I had to rush over to the lab again to get restabbed. Always a joy! *wink*

Needless to say, it took a crazy long time to get the lab results back for my thyroid. The T3 and T4 are finally within normal range. Hallelujah!! However, the TSH is still pretty low at .02. The Endocrinologist said it will take time to get my TSH back to where it belongs but she is hopeful that I will not have to be on a steroid medication. I am avoiding that. I don’t do well on oral steroids. It makes me swell up and retain water. I only do well on IV steroids. So, my doctor was REALLY hoping that my thyroid would respond to Methimazole (Tapazole) and because it’s responding, I’m to continue with the medication. Labs every two months and an appointment back with her in 4 months. She reminded me to call the pulmanologist if I have a fever and start feeling like I’m coming down with something (sore throat) so that I can have my white blood cells checked. Methimazole can affect the White Blood Count and leave you vulnerable to infections. Hooray!! This was especially nice to hear after the fact that I had a terribly sore throat last week. Since I’m always on top of these things, you can bet my phone was dialing my primary doctor before I even could say, “I better call my doctor for antibiotics!”

Now, you are probably wondering if this is overuse of antibiotics. For me? No way. I rarely have need of them because I’m very careful about my health and being around others who may be sick. In fact, I think I’ve only needed antibiotic about once a year and that’s precautionary. My lung volume is so low that I can’t wait long to see if I will recover from a sore throat. Why risk it? In the past, I’ve gone from sore throat to pneumonia overnight. Ask my mom, she’ll tell you. So not fun.

Now that I’ve been off Opsumit for two months, my breathing is no longer so labored when I do chores. That’s not to say that I don’t have shortness of breath while I vacuum a room. That’s a given but at least I’m not bent over gasping for air either. Thank you Jesus! I am definitely happier for that bit of mercy. I think some of this happiness comes from the oasis my husband had built for me. Our back patio is now where I can come outside and sit down to enjoy some outdoor peace. I will have to show you some pictures of it on my next Random Picture Day which will be soon.

Be well everyone! Take care of yourself. I hope you have a great Halloween! You can always reach me through my email at: goredrider@gmail.com

A lot of catching up to do…

Living On Oxygen for Life

I can’t express to you enough how crazy the month of August had been and it seems to be overflowing into September. I had a LOT of doctor appointments last month and there wasn’t a week where I didn’t have at least one appointment. This month has been a little better but the doctors now think it’s ok to call to tell me that they have to reschedule my appointment because they need to be out of town or whatever. I don’t know if they even realize that K has to take off from work to be able to drive me to these appointments. It’s not like he can take off willy-nilly at a spur of the moment. Unless it’s an emergency (like really an EMERGENCY), he needs to give his job a two weeks heads-up. These Dallas appointments and the actual emergency trip to the ER and my admittance to the hospital in Dallas last month is starting to really burn up K’s sick leave.

Now, that’s not to say that I can’t drive myself to the local doctor appointments except for the one’s where I’m having the nerves in my neck cauterized to help with migraine headaches. I’m not allowed to drive myself for those. In fact, until I get my breathing and my thyroid problems under control, I’m postponing the final cauterizing appointment. I just don’t need the added stress of the procedure.

The thyroid medicine that I’m taking has still not stabilized my thyroid level yet. It’s getting me really frustrated. We still don’t know for sure what caused my thyroid to act up. I had all sorts of tests in the hospital. I’m hoping it’s going to be a temporary thing and then go back to being at a normal level. The sooner the better! haha!

Today I have a Pulmonary Hypertension doctor appointment. I’m back on Tracleer; still on the half dose for the next 2 weeks. Then I get bumped up to full dose at 125mg twice a day. I chose to switch back to Tracleer because it’s the evil I know whereas I think (my personal opinion) that the Opsumit was the culprit causing the breathing, low potassium, body pain and thyroid problems. That is too many things happening out of the blue, in such a short time span, to make me think that Opsumit is doing something to me. However, I could be wrong. I’m pretty frustrated that I left the hospital with just the diagnosis of being Hyperthyroid. They wanted to blame it on my heart medicine (Cordarone) which is understandable but my Primary Care doctor was saying that he thinks Cordarone can cause “Hypothyroid” not “hyperthyroid.” So, he’s going to look that up. He’s on the case! Though, he doesn’t want to step on the toes of the Dallas doctors.

Another thing that bothers me is that while I was in the ER they drew labs and the results showed the ALT and AST functions were high which have never been that way for me in the past. These show how your liver is doing. Not once did they tell me this. I had to find out by requesting a copy of my labs. When I brought it up with them via email, they said they weren’t worried about it because the labs I took 3 weeks later were normal. My question is: Why were they abnormal in the hospital? and How long had they been abnormal before that?

Ok, I’ll calm down now and tell you how my week went with my mom since she came for a visit this week. I had a really good time with her. She doesn’t move very fast. So we could relate to each other really well. She transplanted the flowers I brought home from the hospital for me. She’s a great gardener! We had a fun competition of doing Sudoku puzzles. She is definitely better than I am. I guess she thinks faster than me. haha! It’s ok… we had fun. K and I are going to have her come down often because she can ride on the train now. YEA!

I do want to mention that there is a “Need a Hug” giveaway going on right now! The deadline is September 12th! Go here: Read how you can enter to win a Need a Hug afghan!

FOLLOW MY BLOG via email. I don’t want you to miss out of all the fun adventures I have while living on oxygen! Stay well!