Sunday, November 30, 2008
Saturday, November 29, 2008
*SusanT (I am reminded of her beautifully kind spirit every time I get into my car because I have a starburst hanging from my rearview mirror that she sewed into a birthday card she gave me the year before. I think I miss her the most)
*Shelly (a Myspace phriend with a really wonderful personality, who used to send me uplifting messages at moments when I seemed to need them the most)
*Stella (who sadly may have passed from cancer and not PH, but still very much missed despite the reason)
*Brenda (a very sad loss no one was expecting, and even sadder to find out about several weeks after she actually had left us)
*Tara (a fellow bead addict who was so thrilled learning about my sister's pendants when I called her one time to see how she was doing, despite the fact she wasn't doing well at all).
I am trying to hard to think if I've missed someone who has passed this year, but these ladies are the ones I am remembering offhand. I know they are so much better off now, breathing freely, and without pain and suffering. But they are missed and remembered by so many, and I don't think I'll ever forget them! To Sue, Shelly, Stella, Brenda, Tara, and all the other phriends who have passed this year, I hope you know how much you are missed.
Friday, November 28, 2008
I took about 3 and a half hours to put up the tree, decorate it, and put out all my other decorations. I took a couple breaks, one being lunch break. As I sat in the kitchen eating, Mittens was in the computer room (with the door shut), banging on the door and putting his paws underneath it because he wanted to come out! But I have to shut him out while putting up the tree, or he'll try eating it the entire time. It's bad enough he eats it!! I don't need him gnawing on a branch while I'm trying to put it on the pole!!
So my decorations are all up, and my lights plugged in, and turned on (with a timer, so I don't have to keep going behind the tree!). Last night when I got home, I got ready for bed, got my laptop and got under the covers, and shopped for my last remaining gifts online!! I am now done Christmas shopping, except for one more item I want to buy, and I'm not going near the Outlet malls for it this weekend!! Now I need to get a bunch of Christmas cards, and gift wrap! And stamps! And I think I'm set! Maybe!!
Accredo Therapeutics - provides all FDA-approved treatments for PH, as well as nursing and pharmacy services to PH patients
Actelion - developer of Tracleer (bosentan), and also Ventavis (iloprost)
Caremark - offers support in nursing, pharmacy, and distribution of Remodulin and Tracleer
Curascript Therapeutics - provides Remodulin and Ventavis
Encysive Pharmaceuticals - developers of Thelin (sitaxsentan), which is still in Phase III clinical trials
Gilead Sciences - maker of Letairis (ambrisentan), and also distributes Flolan
GlaxoSmithKline - maker of Flolan
Lung RX - a part of United Therapeutics which focuses on sevaral pharmaceutical products
Pfizer - maker of Revatio (sildenafil)
United Therapeutics - pharmaceutical company dedicated to development and marketing of therapies for lung diseases, focusing strongly on PH
Thursday, November 27, 2008
*I am thankful for God allowing me to wake up in the morning to a brand new day. For it is one more day that doctors weren't sure I'd have many years ago.
*I am thankful for my loving cat who greets me every morning as I come out of the bedroom after waking up. I have had him since dealing with increased symptoms of PH, and he makes me happy when I am feeling crappy or down.
*I am thankful for being able to take care of my personal needs without getting so short of breath, like showering and dressing. It means the medicines must be working, at least for now.
*I am so thankful for the roof over my head, and the food I can get, even if I am getting help from the government to survive on my own. Being on disability and food stamps once hurt my pride, but I know that without them, I would not be here.
*I am thankful for all my doctors. Every one of them cares about my health concerns, and every one of them have provided the best answers possible to my questions regarding PH and my general health. I feel terrible for those PHers who were misdiagnosed over and over again, but thankful they finally found a doctor who would listen and understand what they were going through, and could finally get help.
*I am thankful for my family, who have been so supportive all my life. They have all helped me in so many ways, and I love them all so very much.
*I am thankful for my friends, especially the ones who have stuck by my side despite my PH. I have lost a few friends, especially one who I thought was my best friend, because they just couldn't handle the symptoms that went along with PH. But for the friends who have been there for me, I don't know how much I can thank them for that. There aren't enough words for that. I just hope they know how much I love them.
*I am thankful for my phriends, who are the first group of people who completely get me and understand what I've been dealing with for 33 years so far. I was amazed when I found them, and I still can't believe sometimes that there are other people out there going through what I do. I'm very thankful I found them!
*I am thankful for my medicines, which help me get through my day (usually). If I wasn't finally put on a treatment in 2003, who knows where I would be right now?? I am thankful, also, for the oxygen. Despite my hate for it, I know it is a tremendous need, and I make do with it the best I can!
*I am thankful for my day, even if it was a bad one. I am thankful that some days I can do so much, even though I know I may have to pay for that the next day. Every day is a gift to me, and I try not to complain if it didn't go so well. Hopefully, I will wake up to a new day, and once again, my cycle of Thanks will begin.
Wednesday, November 26, 2008
Cutting back on sodium seems like it is so hard! Salt is in almost everything, so how does one do it?? Here are 5 tips found here on the PHA website on how to cut or limit salt in foods we eat:
1. Throw out your salt shaker. Do not use it in food preparation or at the table.
2. Check the serving size on processed foods when adding up your sodium intake. Purchase products with no more than 200 mg per serving.
3. Eat lots of fresh fruit and vegetables.
4. Watch out for sodium in non-food items including medications and water softeners.
5. Decode your food labels...
**“Sodium-free” means less than five mg of sodium per serving.
**“Very low sodium” means 35 mg or less per serving.
**“Low sodium” means 140 mg or less per serving.
**“Unsalted” and “no salt added” mean only that no extra salt was added; they are not
necessarily low sodium foods.
**“Healthy” means less than 360 mg of sodium per serving.
Tuesday, November 25, 2008
I hosted chat today, which was a little slow at first, but then several regulars came in for a bit. Around 3, I left so I could work on restocking my jewelry site. I didn't pay attention too much to what I sold at the jewelry party, so I had to go through everything to figure out what was missing. Thank goodness I take pictures of everything! I realized I sold quite a bit! I still have more items to put up in the store tomorrow, and after that, I can figure out what items I'd like to make more of. I hope to start making different necklace styles during the winter. I say this all the time, and then I don't end up making anything for weeks at a time. At least it'll give me something productive to do!!
Tomorrow I think I'll work more on the jewelry stuff, but I seriously must also clean the fish containers. A couple of them have such low water levels, I don't know how they are swimming. I know, I'm a terrible mother!! I was going to try getting to it today, but after I washed my dishes (which also desparately needed to be done), my hands were so dry and cracked, I couldn't try cleaning all the fish, too. So, that's top priority tomorrow. I'm sure the bettas will appreciate it!
I'm off to do stuff before bed. I don't feel too tired right now. I did take a half of a muscle relaxer tonight, but obviously that's not making me sleepy. It's also not helping my leg!!
1. Obtain and maintain copies of all of your medical records in a binder.
2. Seek an evaluation at a Pulmonary Hypertension (PH) Center.
3. Read PHA’s 280-page book, Pulmonary Hypertension: A Patient’s Survival Guide.
4. Make a list of all of your medications.
5. Ask your doctor if a handicapped parking permit would help you.
6. Make a written list of all your questions and take notes when the doctors and nurses answer them.
7. Educate yourself about your health insurance plan.
8. Keep a written list of all of your doctors and their contact information.
9. Evaluate your financial situation.
10. Get education and support.
**Just a personal note about #5.....I felt so stupid asking my doctor to fill out part of the handicap permit application many years ago when I applied. I wasn't embarrassed to ask my doctor to fill it out. What bothered me was the fact I needed it at all, and that I was only 25(?) when I applied for it, and looked like nothing was wrong with me. I wasn't wearing oxygen at the time, so every time I pulled into a handicap parking spot, I was so self-concious of being in that spot. If someone was around before I got out, I would pretend I was busy with something in the car until I noticed they weren't there anymore, and then I could step out. It's still a feeling I struggle with, but not as much as when I first got the permit. I know that it's something I really NEED!! There have been times where I've needed to go to a store, and if there isn't a handicap spot available, I'll just leave and come back another time. Especially in the winter, or if I'm not feeling that great. A handicap permit is definitely something to consider if you feel the need for one!!
Monday, November 24, 2008
Question: What issues should PH patients consider before undergoing general surgery, specifically relating to general anesthesia?
Answer: Anesthesia and general surgery in patients with pulmonary arterial hypertension (PAH) are associated with increased risk of morbid events and death due mainly to right heart failure, abnormal heart rhythms, and postoperative low oxygen levels. Successful management of patients with PAH undergoing general surgery requires a multidisciplinary approach involving the pulmonary hypertension specialist, an anesthesiologist well-versed in the management of PH patients and right heart failure, and an experienced surgeon. A careful analysis of the pre-operative and operative risk factors, and a plan for intra-operative management and early recognition and treatment of post-operative complications should be undertaken.
There is limited literature describing the peri-operative risk of morbidity and mortality in patients with PAH undergoing general, non-heart surgery. However, compared with other high risk patient populations undergoing general surgery, the peri-operative risk is greater in PAH patients. The risks seem to be higher in PAH compared to other causes of PH. The complications can occur within several days of the surgery. Peri-operative risk assessment involves an individualized approach taking into account the type of surgery, the functional capacity (World Health Organization [WHO] functional class), hemodynamic severity of PAH at right heart catheterization, the functional status of the right side of the heart, and any other medical condition present.
Those patients who undergo low risk operations and have low risk clinical features will generally have a good outcome. Those who undergo intermediate- or high-risk surgery and/or have high-risk clinical features may have poorer outcomes. Low-risk operations/procedures include skin, cataract, and breast surgery and endoscopic procedures (i.e. gastrointestinal, urinary tract). Intermediate-risk operations include carotid endarcterectomy, head and neck, gynecologic, gastrointestinal/intra-abdominal, orthopedic, prostate and thoracic surgery. High-risk operations include major surgery that is done in an emergency situation, aortic or other major blood vessel surgery, and liver transplantation.
Clinical features that predict a low risk include good functional status, in that the patient does not have symptoms of shortness of breath, fatigue , chest pain or lightheadedness with ordinary physical activity (WHO class I), favorable hemodynamics at right heart catheterization, good right heart function on echocardiogram (heart ultrasound) and normal lab tests. Features that predict a high risk include poor functional status (patient has marked limitation of physical activity and can be symptomatic even at rest [WHO class III, IV]), unfavorable hemodynamics at right heart catheterizaiton, and echocardiogram showing evidence of an enlarged, thickened and/or poorly functioning right side of the heart. Laboratory studies consistent with a stressed right side of the heart (high B-type natriuretic peptide [BNP]) and reduced kidney function are also predictors of high risk with general surgery. Other concomitant medical conditions, in particular a history of pulmonary embolism (blood clot to the lungs) can also increase the risk of general surgery.
In situations of elective general surgery, a careful pre-operative evaluation should be performed by an anesthesiologist experienced in the care of the PH patient. The aneshesiologist in communication with the surgeon and PH specialist can determine the best monitoring approach (which in cases of intermediate and high- risk surgery will often require the placement of a catheter in the right side of the heart to guide therapy), the best anesthetic approach (limited regional, epidural block, or general anesthesia), and a plan for pre-operative, intra-operative, and post-operative management of the pulmonary hypertension and potential worsening of right heart function.
Nerve blocks are usually considered in patients undergoing surgery to a foot or arm. Epidural anesthesia (a catheter placed in the back just outside of the sack of the spinal cord) can be successfully employed for repair of an artery in the leg, gall bladder surgery, Cesarian section, and other gynecologic procedures.
General anesthesia is usually reserved for higher risk operations. Most peri-operative deaths occurring in patients receiving general anesthesia are associated with the surgical procedure itself and the underlying disease rather than the general anesthesia per se. Certainly, there are some anesthetic agents that should be used preferentially and others avoided in PH compared to other patient populations. The experienced anesthesiologist will choose the most appropriate agent or combinations of agents depending on the type of operation, and the particular patient profile.
Peri-operative management includes assessment and optimization of the patient’s baseline clinical state before the surgery, avoidance of factors that can cause the pulmonary arteries to constrict, careful management of ventilation to assure optimal oxygen delivery, the administration of appropriate drugs that dilate the pulmonary vessels, and early post-operative identification and treatment of right sided heart failure and any factors that could predispose to its development.
In summary, when undergoing general surgery the most important consideration from the PH patient’s perspective is to assure that the team involved in the pre-, intra-, and post-operative care is experienced in the management of patients with PH/PAH.
Question answered by:Teresa De Marco, M.D.UCSF Medical CenterSan Francisco, Calif.
Sunday, November 23, 2008
When I went downstairs after I got to Mandy's house a couple hours before the party, I saw all of her stuff on a couple tables. I was overwhelmed by how much she had made. I also couldn't believe how gorgeous everything was!! She had glass pendants of all various shapes, sizes, and colors. She had glass magnet sets. She made really pretty (but apparently pain-in-the-ass to make) bracelets! She also had candle holders that were really nice. I am a glass-a-holic, and I wanted all of it!! LOL!
I set up all of my jewelry, and had to keep squeezing boxes together so that everything fit on the table. I keep forgetting how much stuff I have! Everything got set up, and then I helped prepare all the food we had. My friend was one of the first to arrive, and after that, the night just seemed to go by quick! We had many people show up, jewerly was tried on, put back, tried on again, ooooo'd and aaaaah'd at. Sales racked up for both Mandy and I. It turned out great! Between the two of us, we made over $600!
I also had a sheet of squares to sell, to raise some money for the PHA, being that it is still Awareness Month! The winner got $25 in jewelry. I sold $40 in squares, so that will go to PHA!!
All in all, it turned out to be a great evening! I had a good time, and despite my aching feet when I got home, I'd do it all over again!! Now I need to re-stock my store on Etsy, because a ton of stuff expired, and I need to re-price things. The only bad thing I didn't do for myself last night was write down what I sold. Because now, I have to go back and look through all my stuff, to see what is missing!! lol Oh well, I have a lot more time now to do that! Then maybe I can sell more there!
I started PR in September, and I was nervous about it at first. When I walk on my treadmill at home (which is so sporadic lately, and not good!), I usually tire out easily. But then some days I do so well. My biggest problem has been consistency. It isn't good to exercise for quite a while and then just stop. The body gets de-conditioned that way, and if exercising is started up again, it's like starting all over. Pulmonary rehab has at least made me go somewhere to exercise 2 times a week, and sometimes I walk an extra day at home. Here is what I do at PR:
*I get my portable oxygen set up when I get to the rehab gym, grab my chart, write down goals for the day if the respiratory therapists haven't done it, and check my heart rate and oxygen sats.
*I do warm up exercises! There are pictures on the wall to follow. I exercise my head and neck, shoulders, arms, and legs. After that, I check HR and sats again. I write them down on my chart.
*The 4 exercises can be mixed up in any order I'd like to do them in. Their only request is that I alternate arm and leg exercises. So if I do a leg exercise, I need to do something with my arms after! Usually I like to walk on the treadmill first. When I first started PR, they only had me doing a few minutes at at time, until I built up to 10 minutes. After that, they like to increase the incline slowly. And obviously, I do what I feel I can do!! After walking on the treadmill, I check HR and sats, and write them down.
*I lift weights after the treadmill, and right now I'm using 4lb weights. They started me off with 2lbs. There are pictures on the wall to follow along in using the weights, and I do 10 repetitions of the exercise slowly. After that, I check HR and sats, and write them down.
*There are several different pieces of equipment to use for legs besides the treadmill, and my favorite lately is the stationary bike. The last time I rode an actual bike was when I was maybe 11 or 12, and I ran into a tree, fell off the bike, and sprained my ankle! I was all the way down the street from my house, and actually I live across the street from the tree today. I couldn't get up, and my mom saw me because she was on her way to work Bingo! Anyway, that was the last time on the actual bike! So when I tried the stationary bike for the first time at rehab, I realized how much I missed biking! I had to slowly work up to 10 minutes on that machine, because it certainly can kill your legs if you overdo it. After I finish riding, I check my HR and sats, and write them down in my chart.
*The final exerciseI usually do is the arm cycle machine. I have found the arm cycle fun, until I added a tad bit of resistance. Oh my, that can be tiresome! But I can still do 10 minutes, and, I can certainly feel the arm mucscles I'm getting from it!! I check my HR and sats afterward, and put them in my chart.
*Cool down exercises are the exact same thing as the warm ups, and it's the final thing I do at the end of my exercise routine. I follow along with the pictures on the wall, and after I'm done, I check HR and sats for the final time, write them down, and then I'm done! Everything takes me about 45 minutes to do. So far, I've been loving it. It's the first time I've been to a gym, even if I'm exercising with people way older than me! But, it's fun!! And I think that any PHer, if they have the chance to go to pulmonary rehab, SHOULD go!!
For a few more exercising tips, go here!
Saturday, November 22, 2008
*If you’re not comfortable doing your own training, contact your specialty pharmacy to organize and conduct the training for you.
*Ask your EMT to put you on the BOLO, or “Be on the Lookout” list, which is a list of people who should be the first to receive attention, a check-in, electricity, or specific needs, in the event of a blackout, inclement weather, or disaster.
*Ask your EMT to tag your number in their system so that if you ever call 911, they’ll be automatically alerted that you have special needs.
*Introduce yourself to the staff of your local fire department.
*Get on a list with your fire department, and provide them with answers to the following questions:
**Are you on special medical treatments?
**Do you use life sustaining oxygen?
**Do you have liquid oxygen in your home?
*Think about what you would need from your local utility company in the event of a power outage or natural disaster (e.g. life sustaining equipment, refrigeration, oxygen, batteries and electricity).
*Take advantage of stickers you can put on your window that alert your local EMS to your condition and direct them to an “EMS File” detailing your specific needs, which you can keep on your refrigerator. They are sold by pharmacies, grocery stores and other local vendors.
Friday, November 21, 2008
*I wear a Medic Alert identifier to convey critical health information. I’ve included “Pulmonary Arterial Hypertension,” and such applicable information as “Do Not Stop Pump,” “On Sildenafil -No Nitrates” and/or “Takes Coumadin”
*I always carry a cell phone and/or let people know where I am going if I am traveling alone. I have signed up for a roadside assistance program.
*I maintain a current list of all of my medications. I’ve included concentrations, doses and rates for infusion and/or oxygen therapy.
*I have a three day supply of all my medications and supplies. I keep it with me at all times.
*I keep a current list of emergency contact information.
*I am involved with my PH center in teaching local EMT/hospital personnel about PH, my therapy and how to respond in an emergency.
*I have consulted my PH-treating medical professional and s/he has assured me that I have all the items I need.
Thursday, November 20, 2008
My mom picked me up about 40 minutes later, and after going to the post office, we came back around my house, and stopped to ask a few workers when the gas would be back on. One of the guys said it would be awhile, but they'd knock on people's doors to let them know it was on and to turn the pilot lights back on. I said we were going grocery shopping, and the guy said it would definitely take that much time, maybe even more! Gee whiz, what did they do??? Anyway, we went to two grocery stores, and I got back around 5pm. Still no gas! The heat was at 61 in the house, but for some reason, I was really warm, so I stayed and put stuff away.
I was on the phone with Mandy when my doorbell rang around 5:30. It was a gas man! He said he was going to turn the gas back on, but he had to check a few things out first. I said that was fine, turned the light on for him, and mentioned something about how the gas smell had been bugging me because I had health problems. He was like really? You look good to me, and I bet you get asked out all the time. I was like, naa not really (thinking to myself, hmmmm, he's hitting on me!). He said really?? I'm surprised! And he goes down into the basement. He came up a couple minutes later, had to go outside, came back in, and started filling out some paperwork. I ended up telling him I have pulmonary hypertension along with a heart defect, and again he was so surprised because I didn't "look the part." I told him my meds must have been working that day (thanks to Merle for that response!). I also said I wear oxygen all the time, I just hadn't put it back on yet after getting home. We ended up chatting back and forth for like 20 minutes! I did tell him it was PH Awareness month, so now another person was informed about the disease! He was getting ready to leave and said something about maybe stopping by some time and saying hi. Then he said, or maybe he could give me a call some time. It took me by surprise a little, but I told him I had a business card since I made jewelry, and I gave it to him.
THAT IS SO NOT ME!!!!!!!
I could tell he was surprised I offered my number, but kinda happy at the same time. He said he'd give me a call, maybe this weekend. !!!!!!!!!!!!!!! He did sorta spew out at the last minute that he wasn't married, never has been, and doesn't have kids. I didn't even ask that! We said our goodbyes, I shut the door, and just kinda stood shell-shocked for a few minutes in my kitchen with a smirk on my face.
Not only did I make him aware of PH, I gave him my number!!! And even after I told him about wearing the oxygen, he still was happy to have my number!! HMMMMMMMMM!!
So that is my PH awareness blog of the day. Kinda a bit on the personal side, but hey, I spread the word! LOL!
Wednesday, November 19, 2008
Cold & Flu Season Tips:
*Always get a flu shot!
*Never use antibiotics for a cold or flu. They don't work!
*Never share or use leftover antibiotics.
*Stay healthy! Use disinfectant cleaner on hard surfaces every day.
*Don't forget to wash your hands often. Use an antibacterial lotion if washing your hands is not available.
Here are a few of my own tips for dealing with a cold or flu:
*Get plenty of rest! This may seem like a silly thing to point out, but some people (including myself!) don't get enough rest while trying to deal with a cold.
*Make sure to have soups on hand, or ingredients to make soups, which are great to eat if you aren't feeling well!
*Get plenty of fluids. Some people may need to watch their fluid intake, but it is still important to make sure to stay hydrated while dealing with a cold.
*Do NOT take an decongestant! Decongestants are not recommended for people with high blood pressure (including PHers, since we have high blood pressure in the lungs) because they constrict the blood vessels. Our blood vessels are already constricted, so taking a decongestant would make things worse!
Tuesday, November 18, 2008
When my parents brought me in for the appointment with the cardiologist at Children's, the doctor took one look at me, and took me before all the other people in the waiting room. They knew something was very wrong! They did an echo, EKG, eventually an RHC (right heart catheterization, and finally told my parents that I had atrioventricular canal (a congenital heart defect, two holes in my heart), and pulmonary hypertension. They told my parents there wasn't much they could do, to take me home and allow me to live a fairly normal life. They weren't sure if I'd live a year (I was diagnosed at 9 months old), or 50. I think they were really thinking I wouldn't make it past a year! They told my parents to seriously consider having another baby right away. Of course, my parents were scared to death with this news, but they brought me home and did the best they could for me!
I spent my childhood very short of breath most of the time when I played with my sisters, or with the neighborhood kids. I did run around with everyone, trying to keep up, but I had to take a lot of breaks! Naps were a normal, almost every day occurance. I never played sports, or even took gym classes in school. I was limited on what I could do,but my mom still found other ways I could participate in things to feel like I wasn't missing out on too much. When my classmates were off at gym, I would go down to the first grade classroom and help the teacher with things. I was in 7th and 8th grade, and it was during that time I decided I wanted to become a teacher myself!
High school and college were more personal challenges for me to deal with. I wanted to be able to do things my peers were doing, but I knew that I couldn't do most of them. My heart seemed to handle things well so far, not having any major problems growing up. I went to my cardiologist regularly, getting echos every time I went. No issues really. Growing up, the only med I was ever on for my condition was digoxin, for the heart. Pulmonary hypertension seemed to just be in the background, and I never knew exactly what it was, let alone how to say it!
When I got out of college, I started subbing for a couple months before I found a job as a preschool teacher in a daycare. I worked there for a couple months before I got another job as a preschool teacher for Headstart. It was working at Headstart when my health slowly started to decline. My classroom was on the 2nd floor, the cafeteria where the kids had to eat (and we were required to eat with them) was in the basement, so climbing 6 flights of stairs a few times a day started really hurting me. Not to mention that little preschoolers are germ factories! I also was dating at the time, trying to go out partying almost every weekend, and going back to grad school for my masters' degree. During my third year at Headstart, I really started getting sicker. I had double pneumonia, bronchitis, and was on my third respiratory illness when my PCP told me, with tears in her eyes, I needed to quit my job. But honestly, I don't think I'd still be here if she didn't tell me to do that!!
I quit my job, but decided to finish my masters'. I spent a lot of time recovering from being sick while working, and just getting a lot of rest besides going to school. My PCP eventually referred me to the Cleveland Clinic for a lung transplant evaluation. I went for the first time in 2001. I was put on oxygen 24/7, and told I needed to start Coumadin. The next couple times I went back, transplantation was talked about, but I didn't have any testing done for it. In 2003, I was told I was going to start Tracleer. I had no clue what this was, the doctor really didn't tell me! A month later, I realized it was a pill. Whew! I had read about Flolan, and I sure did NOT want to start that!
I began Tracleer on October 12, 2003. People pick on me a lot for remembering dates for things, but remembering a date that significantly changed my life is no laughing matter. I didn't notice any changes with the Tracleer until maybe a month after starting it. It was extremely subtle, but a change, nonetheless. I went to vote for something, and on the walk back from the building to my car in the parking lot, I realized I wasn't short of breath! I couldn't believe it! I got back home, walked from my garage to the house (which sometimes causes me to get SOB), and felt ok! I started crying! My life was all about being SOB most of the time doing anything physical, and here I was, feeling OK. After that, the Tracleer kept improving my condition. I went from never being able to take gym at school, to walking 2 miles on the treadmill!! It was like magic!
Over the next few years, I felt the Tracleer had sort of tapered off. I asked about Revatio, and started it on August 16, 2007. After being on it for awhile, I felt it helped, but I did increase the dosage again about a year later. Between Tracleer and Revatio, I feel good most days. Yes, I still get tired, yes I still get SOB, but it's not as bad as usual when I was growing up. I've learned to make adjustments to whatever I do. I've learned to take my time with things, and not overdo something. If I'm going to exercise one day, I won't also clean. If I'm going to attempt vacuuming, that will be my exercise! If I'm going to have a full day being out somewhere, I make sure the next day is for rest. I usually stick to what I say I'm going to do, although I can be hard-headed about stuff and push my limits every once in awhile. But for the most part, living with PH has been much easier for me with medicines that were not even available 33 years ago when I was diagnosed. I thank God for allowing me to have so many years so far, and I pray it can continue!!
During the past 7 years since I've been going to Cleveland for treatment, I have found a new focus in life, PH awareness. Since I found out about the PH Association, I've been going there daily, sometimes several times a day, to read the message boards and chat with phriends. I host 2 chats there, and I answer questions or respond to posts when I feel I can share something useful. I also run my own PH support group in Buffalo/Niagara Falls. That was definitely a blessing for me to start, not only for my own sense of belonging, but for those who join, too. I keep busy with my life, and I surely rest when I need to do so! I'm managing with my PH, and I can only hope it continues!
Monday, November 17, 2008
The beading has been keeping my mind off of everything going on with Mason. Not that I am not thinking of him every hour. It's just that, if I didn't have anything else to occupy my time right now, I think I'd be more depressed about it all!! He is fighting, I know. I was told by his mom that today he briefly opened his eyes. That made me smile! I have said so many prayers that he'll get through this, and I know so many others have said them, too. Hopefully I will hear more tomorrow!!
My first meeting was in October 2005. I had a handful of people, but I kept reminding myself that a support group was a meeting of 2 or more people. I made the meeting a general one, explained my life story with PH, and why I wanted to start the group. Everyone shared, everyone had questions for each other, and boy did that 2.5 hours fly by quick!! It was a success, and I was so relieved!!
I have had probably 10 meetings now in the past 3 years. It's hard to get people together in Buffalo when the snow is flying in winter, and it's freezing. If I don't want to go out there in the cold because I know how much it affects me, then I sure don't expect fellow PHers to drag themselves out for a meeting in the middle of winter either! But the meetings I have had slowly start to bring out more PHers. The last meeting I had in October brought together 20 people, 8 of them PHers. We may still not be a large group, but we sure do enjoy each other's company, and learn a lot! And the best part about it? I get to socialize with real live people who are just like me with this illness. I also get thanked by each one of them for providing them a way to share their feelings and concerns. It's definitely a great feeling, to know that I'm not only helping myself, I'm helping others living and coping with PH!
To find a PH support group near you, please go here.
Sunday, November 16, 2008
Saturday, November 15, 2008
Phriends have become so important in my life. When I pray at night, I ask God to Bless my family, my friends, and my phriends. Every one of my phriends have something they are dealing with, whether it is PH related (usually it is), or something else that is going on in their life, that needs prayers, so I include them and care for them just as much as I do for my family and friends.
I didn't know what to post today about PH until this afternoon. One of my phriends is in dire need of prayers and good thoughts. He is a phriend I care for dearly, one of my best buddies online. Mason is a 20 year old double lung transplant recipient, and he has had it rough since the summer. He started chronic rejection, and when he finally started getting answers after switching back to his old doctors in L.A., he thought maybe he'd finally be able to start feeling better. This hasn't quite happened. He was in the hospital several weeks ago with issues, and just a few days ago, he went in again. Only this time it seems to be worse. There are so many phriends praying for him, worrying about him, and hoping beyond hope that he will pull through this. I feel like I've been begging God on and off today to please please please let Mason get through this, and to let him get stronger. I know God has plans for Mason, and I know I'll never understand what they are. But I am hoping God will hear the prayers of so many who want this young man to get better, to be able to recover and live a life he's wanted to live. Mason is the reason I wanted to post about phriends today. Because he truly is one of the closest phriends I've had, and I am having a hard time not talking to him many times a day like we usually do!!
Friday, November 14, 2008
A. If a PH patient's PH specialist has tried every appropriate treatment, and those treatments are not working to full capacity to make the PHers life better, a lung transplant may be one of the last resorts a PH specialist will suggest for treatment. A lung transplant (in some cases single lung, in some cases double) is the only cure for PH. However, having a lung transplant is like trading one disease for another. Living life after a transplant can have many risks. But when a transplant is the only option left, many patients do decide to get one. In the last several years, with the number of other treatments available for PH patients to take, the need for transplant has dropped considerably.
Thursday, November 13, 2008
I got to the office a few minutes early, checked in, went to find a seat, and saw this guy who was very familiar to me. He glanced up and saw me, and he broke out into a huge grin. It was Ricky, a friend of my dad's who, funnily enough, I saw at this same office a few years ago! LOL! He got up and gave me a big hug, and we went to sit down. He asked me how I was doing, I said well besides sick, I was good. He asked how my dad was, and I said he was good, and then the nurse called Ricky's name. Darn it!! I wanted to talk to him more!! I always liked Ricky, he is such a nice guy. And I know he's an older man, but he's also easy on the eyes. Not that I would ever go there. hahahahaha!!
I got called back about 10 minutes later, and the nurse took my weight. Umm, yeah, what she wrote down is not what I weigh. I'd take off 5lbs, b/c I weigh myself at home, and I know I've been steady at my weight lately! lol I am also not saying this b/c I think I'm fat or anything. I don't want anyone thinking I'm complaining about my weight!! ANYWHOO.....I waited 10 more minutes for the NP to come in. She started going over what meds I take, b/c for some reason, no one could find my chart!! I've only been going to the same doctor for like 15 years or more!! She asked me what my symptoms were, checked my blood pressure (which was fine), and checked my lungs. All clear there, yay!! She looked into my right ear and said "Ewww, doesn't your ear hurt??" Every time I get a cold, my right ear usually is infected, but for whatever reason, it hadn't really been hurting me. Maybe because I've been taking so much Tylenol, I hadn't really noticed!! She checked my other ear, it was fine. She checked up my nose (now that is eww!), and that was fine, then she checked my throat. I did ask if she thought I had strep, and she said she didn't think so, but said we could do a strep test anyway. I told her to go for it! About 8 minutes later, after gagging me with the stick of cotton, the test turned out negative. Yay! She wrote me a script for amoxicillin, my usual, antibiotice of choice. I decided to ask her also about my left leg, and told her how it's been hurting on and off for about a year. I told her that my doc did xrays last summer, and nothing must have showed since I got no calls about it. She asked where it hurt, and I showed her, and she thought it was sciatic. So she asked if I'd been given a muscle relaxer, and I said no. She prescribed 5mg Flexiril, and to take it at night if I need it. In two weeks, I go back to my doctor for a checkup, and I will talk to her more about it!
I went to Rite Aid afterward to get my drugs filled, and to pick up a couple that I had called in days before. I also got some soups, and a bag of toasted chips, I can't remember what they are and I'm not getting up to read the bag. They are yummy, though! lol My mom called me when I got back to my car, and said she had some turkey dinner from the block club meeting for me, so I stopped by for a bit to pick it up. After that, I went home, had dinner, and watched some tv for a bit. I am now off to bed, and I sure am hoping I have a better night sleep than I did last night!!!
A. Letairis (ambrisentan) is an oral medication that was FDA-approved in 2007. Letairis blocks endothelin, which constricts the blood vessels in the lungs. Letairis works to reduce the blood pressure in the lungs, improving activity level in PH patients.
For more information on Letairis, go here.
Wednesday, November 12, 2008
The only good thing is that I've had to stay home, and I've been working on jewelry. I made 3 necklaces yesterday, and 5 today. I have made necklaces with all of Mandy's pendants (I think I made 15 of them)! I really have to admit that they came out so pretty. Now I need to make more of my own stuff!! I'm getting there, slowly but surely!
A. Revatio (sildenafil) is an oral medication, taken 3 times daily. It was FDA-approved in 2005. Revatio works by relaxing and widening the blood vessels in the lungs so that it is easier for the heart to pump blood through the lungs. Revatio can help improve exercise capacity and well being. Revatio is also known as Viagra, the erectile dysfunction drug. However, Viagra is not FDA-approved for pulmonary hypertension. Revatio is.
For more information on Revatio, go here.
Tuesday, November 11, 2008
A. Ventavis (iloprost) is the first inhaled treatment for PH. It was FDA-approved in 1994. Ventavis directly helps open the narrowed blood vessels in the lungs. PH patients on Ventavis have shown an increase in exercise ability and less shortness of breath. Ventavis is inhaled at least 6 times a day, and time taken for each inhalation is 6-10 minutes, depending on the patient.
For more information on Ventavis, click here.
Monday, November 10, 2008
A. Tracleer (bosentan) is the first oral medication in the treatment of PH. Tracleer was FDA-approved in 2001. Tracleer works to block the effects of endothelin, a substance found in excess in a PH patient. Endothelin causes the blood vessels to constrict. Using Tracleer helps to relax the blood vessels, reducing blood pressure in the lungs, and increasing functionality in the PH patient. Tracleer is taken twice daily, and monthly bloodwork must be done in order to make sure liver function is not being affected.
To find out more information on Tracleer, go here.
Sunday, November 09, 2008
A. Remodulin (treprostinil) is another IV or subcutaneous (under the skin) delivered medication in the treatment of pulmonary hypertension. Remodulin was FDA-approved in 2002. Remodulin is a vasodilator, and helps widen the blood vessels of the lungs and other parts of the body. Remodulin has been shown to improve exercise capacity only a few months after a PHer is on it.
Remodulin's half-life is much longer than Flolan's. Instead of disappearing minutes after being delivered into the body (like Flolan), it can last up to 4 hours. As with Flolan, precautions need to be taken to keep the environment sterile when preparing for dressing changes. The biggest issue many Remodulin users deal with is site pain, which usually lessens the longer it is used.
For more info on Remodulin, please go to here.
Saturday, November 08, 2008
It'll be an interesting Thanksgiving. I had one turkey day about 8 years ago by myself. I was very sick, and my parents went to my Grandma's for that weekend. I had a boyfriend at the time, but he didn't end up coming over (one of the reasons he's an ex!!). So it was just me and Shelby. Mittens wasn't in the picture yet. At least this turkey day I won't be so lonely! I'll have my Joanie! And maybe Mandy's family later on for dessert. I don't know yet! Mandy is having maybe 20 people at her house for dinner (all of Ron's family.....I hope she has lots of alcohol), so going over there would be so chaotic. Dessert might be better! It's still early, we can plan as the day gets near!
A. Flolan (epoprostenol) was the first FDA-approved treatment for pulmonary hypertension in 1996. Flolan is known as the "Gold standard" treatment for PH. It is a continuous IV medication, and works by dilating the blood vessels to allow more blood flow. It also helps the right side of the heart to pump blood through the lungs.
Flolan is continuous because the effects of the medication lasts only minutes at a time. It is delivered into the bloodstream by a pump and IV catheter in the chest. The major concern with Flolan is infections at the IV site in the chest, and every precaution must be taken to keep the enviroment sterile when changing the dressings, and mixing the medicine. However, Flolan has been proven to save the lives of PHers who were extremely ill.
For more information on Flolan, please go here.
Friday, November 07, 2008
By the way, Joanie, can you please tell mom I clarified my point in this blog? LOL
A. Calcium channel blockers (CCBs) are oral meds that relax the muscles around blood vessels, allowing better blood flow through the vessels. CCBs also can regulate the heart rate. CCBs have been used for years for PH patients, although, they do not work for every PH patient. Some PHers do not even respond to CCBs.
CCBs are grouped into conventional medical therapies in the treatment of PAH. Other meds included in this group are:
*Digoxin - A drug taken once a day that helps with the pumping function of the heart. It may also help to regulate irregular heart beats.
*Coumadin (Warfarin) - A drug taken once a day that helps to thin the blood in order to prevent clots. Coumadin must be monitored by blood draws to maintain the correct amount of the medicine in the bloodstream.
*Diuretics - A drug that helps with fluid retention, and also helps to treat heart failure. Diuretics can be taken one or two times daily, and bloodwork is often used to make sure the right dosage is being taken.
*Oxygen - This is prescribed when a person's oxygen saturation is below 90%. It is provided to the patient through an oxygen supplier, and delivered by concentrator and/or tanks.
Thursday, November 06, 2008
A. There are several FDA-approved medicines for the treatment of PH. I am going to list them in this post, and in the next several days, I will give a description of each of them.
*calcium channel blockers
*Revatio (Sildenafil Nitrate)
Wednesday, November 05, 2008
I mean, I know there are Christmas decorations and that kind of stuff out, they've been out for weeks. But that kind of stuff you can just walk on by and not pay any attention until you really want to. However, the music is something you can't really escape!! I mean, seriously?? I walked by an employee humming to one of the tunes, and I just had to laugh at myself! I almost stopped and asked her how much she wanted to bet that by the time December 1st comes around, she'll want to blow out the speakers of any entertainment system playing Jingle Bells!!
Ahhhhhhhhhhhhhhhhhhhh!!! I know that I've been buying Christmas gifts for months now, but I am really really not ready for the Christmas music yet!!! Talk about getting me out of the Christmas spirit!!
A. A pulmonary hypertension specialist should be treating PH. A PH specialist is a pulmonologist, or a cardiologist, who specifically focuses on the treatment of PH patients. Usually, they have seen many PH patients, not just a handful, and they know and understand what medications might be right for the patient. To find a PH specialist in your area, or one that might be close to you (many PH patients need to travel a distance for a PH specialist), go to http://www.phassociation.org/Find_A_Doctor/.
Tuesday, November 04, 2008
A. Many times, an echocardiogram is done on a person, and possible PH is detected in that test by measuring the pulmonary artery pressure. Actually, in an echo, the pap is estimated. Echos can be way off. For this reason, if an echo reading is on the high side, then a right heart catheterization (RHC) should be done. An RHC can tell the exact pressures in the heart. Other tests that doctors usually have a patient go through can include: a 6 minute walk (6mw), pulmonary function tests, chest x-rays, VQ scans, arterial blood gas (ABG), CT scan, and MRI.
Monday, November 03, 2008
A: There are reasons why someone could have PH. Idiopathic pulmonary arterial hypertension (IPAH) means that there is no known reason for the PH diagnosis. IPAH is rare, occurring in only 2 in one million persons per year.
Secondary PH means that there is an underlying cause for the PH diagnosis. Congenital heart diseases, pulmonary thromboembolism, inflammatory diseases (such as scleroderma, CREST syndrome, or systemic lupus), HIV infections, liver disease, and diet drugs (such as fen-fen) are several reasons for a secondary PH diagnosis. SOMETIMES, but not all the time, the treated underlying condition MAY cure the PH. However, this does not always happen. Managing PH and the cause for it has made living with PH for much longer a bigger possibility nowadays!
Sunday, November 02, 2008
PH does not discriminate. Men and women of all ages and race can have PH. It does occur more in women of child-bearing ages, but it doesn't limit itself to just that group. Children can be born with PH, teenagers can have it, middle-aged folks can get it, and even older people. It is a disease that does not limit itself to one group of people.
I woke up exhausted! I felt like I didn't sleep at all. I think all the fresh air I had from giving out candy the night before was a part of it. So, today was rest day!! I saw Diane in the hallway when I went to check my mail, and we chatted for quite a bit. I asked if Frasier dressed as a cow, and she said yes. I was sad that I missed it! But, she said Frasier would love to put the costume back on! So, she went upstairs with him, and I got my camera and stood at the bottom of the stairs leading up to Diane's apartment. When Frasier was ready, he went down the stairs to the landing. OH MY GOSH!! He was so stinkin' cute!!
I spent my evening catching up on things I hadn't watched yet, like Celebrity Rehab with Dr. Drew, The Office, Brothers & Sisters, and Grey's Anatomy. I also spent forever on the phone with my friend, Michelle! It was a quiet evening, but now I am off to bed, and I'm very excited that I get an extra hour of sleep!!! I'm sure I'll wake up at 9 something, when I usually get up, and it'll only be 8 something. lol
Saturday, November 01, 2008
What is pulmonary hypertension??
Pulmonary hypertension (PH for short) is a chronic lung condition in which there is high blood pressure in the lungs. People with PH do not look like they are sick. The symptoms of PH include shortness of breath, extreme fatigue, and dizziness. A person with PH can get tired from doing simple tasks, such as getting dressed and even talking on the phone. PH is not a disease that you can catch from someone else.