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This is who we are: Send me whatever you feel like sharing: who you are, how you feel or what you have been through. The good or not so good.
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This is from another phriend ~ another story to give us hope.
I know you asked me to add to your web site awhile back. I have thought about it and realized it was harder than I thought. Putting 19 1/2 years of PH down on paper isn't easy. This is what I came up with.
I have had asthma since I was 3 years old. I was always treated for asthma aggressively. At that time it was what I needed and it worked. In my early 20's my breathing changed. Again my doctors thought it was asthma and treated it aggressively again but this time it didn't work. I complained and new meds were tried. I missed a lot of work because I was tired and constantly short of breath. This went on for about 2 years. One day I was going up a flight of stairs and I passed out at the top. I woke up in the E.R. I was told I had heart murmurs and I needed to rest. I set up an appointment with a cardiologist and pulmonologist. Many test followed. Echo, EKG, VQ Scan, PFT's, Abg's, this all lead to the Right Heart Cath. During my testing period one Doctor mentioned PPH to me. I wasn't sure what it was but it sounded harmless, little did I know. Well during the cath, the PH was finally found, my pulmonary pressures were in the high 80's found and that was why I was SOB, tired and had low o2 levels, along with poor results from the PFT.
I will never forget the look on my cardio's face when he came in too explain it all to me. I was totally overwhelmed. I realized then that my thinking PH was harmless was way off base. I was confused and very alone. This was in 1988.Back then PH was really rare and there were no medications for it .I was put on Coumadin to avoid clots,o2 so that I could breathe better and was told I need a heart/lung transplant or I wouldn't live beyond 3 years. That is a heavy load to bear at the age of 24.I made some changes in my life. Starting eating right, taking better care of myself and tried to believe there was a reason for all of this. I was put on a transplant list but nothing came through. I was on the list for 3 years. During my wait I continue with life doing the best I could to do all that was possible to help myself. I had another cath done because I had started to feel better and it had been 3 years since my last. By a miracle of God my pressures had dropped. They were in the 50's.I had become more active and felt so much better was still short of breath at times but it had become manageable...I was taken off of the list because my life had changed so much and it pretty much stayed that was for a very long time, but I always felt like there a clock ticking my time. Sometimes I swear I can even hear it.( I know a bit dramatic and crazy but that is what Ph is).Then Boom one day it all started again and this time I knew it wasn't good and went to my docs ASAP.I was being treated at Yale in Connecticut. They told me I was in heart failure. I was back on o2 a ton of diuretics and I was bedridden. This was in 2000. I knew what flolan was but I just wasn't ready to go there. I decided to look into other options. That's when I heard about the testing going on at Duke University. In a whirlwind of decisions I moved to North Carolina and finally saw an actual PH doctor. He recommended actual PH meds asap or I would not live another year. I decided to try Tracleer, guess what -- It Works!!! I have been on this med along with other variety of meds for fluid, Coumadin and such for over 5 years. My last cath was a few months ago and my pressures are down to 37 from the high 90's were they where with my first cath at Duke. I live an active life. I exercise, go places and enjoy everything to its fullest. The clock ticking is till there just not as loudly as before. I have been blessed with this time. I am blessed to know people now that have PH and friends that go through what I go through. I am no longer alone. It has been 19 1/2 years since I was diagnosed. So much has happened in that time. I remember thinking I would be surprised if I live to be 40, well on my next birthday I will be 45.Amazing!! I am glad to be alive! I play, I laugh, I dance. I try to stay positive. PH is doable; you just have to have the right guidance to get through, one day at a time, sometimes a breath at a time. On a more exciting note I got engaged in May. My fiancé is a wonderful caring man who knows and understands PH well. Wedding Bells are in the air. We haven't set a date yet but it is something grand on which I look forward to. One last thing I need to mention is that I have a younger brother and sister that have PH. They live in NY. One is on IV Remodulin the other is on Flolan. They are long time survivors as well. So in my case the illness is familial and so is our strength.
(((((hugs))))) Diane 10-23-07
PH Story of Terry Lindsey My story as a PH survivor starts back in December of 1999. I was a Battalion Medical Trainer with the US Army. I had flown to North Carolina for a Staff visit when I took ill, pains running from my chest to my upper back. After flying back home to Mobile, AL, I went to the Coast Guard base medical center where I had X-rays and blood work done. After about 30 minutes the Doctor came out and announces that my lungs were full of cancer and I might not even make the trip to Keesler Air Force Base Hospital which is only about an hour away. Talking about shock, my wife Judi and I were mortified; we didn’t know which way to turn. They called the emergency room at Keesler and said we were inbound to them and Judi and I made the drive over to the hospital. After having almost all my blood drained and X-rayed until I almost glowed in the dark it was determined that the dark colored X-rays were not cancer, but my lungs were almost completely filled with fluid. I was taken into an exam room where an intern doctor, (seeing how Keesler is a teaching hospital) came in and did a thorocentesis, which is a procedure where they take a long needle and going through your back, they suck all the fluid that they can from your lungs. I immediately felt better; I could breathe and felt like a new person. I was sent home the same day and returned two more times in the next two weeks for the same procedure. By the time of the last procedure I had turned very ill and was hospitalized with pneumonia. After a couple of weeks in the hospital I wasn’t getting any better and they were running test after test to determine the reason. It was determined that I had two diagnoses, one of thrombocytopenia, the other Antiphospholipid Antibody Syndrome. I was put on heparin drip, which I had a allergic reaction too and immediately threw several blood clots to my lungs in which I lost all blood pressure and heart rate, yes died. They shocked me and brought me back to life and bombarded me with other blood thinners besides the heparin. My platelet count had dropped to 4,000 and I was administered IVIG to bring my platelet count back up along with prednisone. They tried giving me platelets but the thrombocytopenia was eating them up as fast as I was getting them. Chest tubes were placed in my lungs to keep the fluid drained from them. The interns were having a field day, running every test that they could think of that they hadn’t done before, and I just got weaker and weaker. The blood draws had gotten to be so many that they couldn’t get a vein to take any more. They took blood from my arms, my legs and finally my feet. They told my wife to call the family in that I wouldn’t make it through the night. Well I did, and the next day my little wife went down to the hospital administrators office and told him that if he couldn’t get the real doctors in to see me that she’d have me flown from that hospital to another hospital, Walter Reed. That day my Commanding Officer, who is a doctor, two of our pilots and a Nurse flew a MEDEVAC chopper in, to do just that. This got their attention. The real deal doctors were in my room pronto, all the testing stopped, and I was treated the way I should have been in the first place. Within the next two weeks I improved dramatically, my head was clearing up so that I could think now that the doctors had quit drugging me up like the interns did. My poor wife had been through hell with these people and I was unable to say or do anything because I was so sick. Finally after almost two months I was released on coumadin, which I would have to take for the rest of my life due to the clotting disorder and prednisone to keep up my platelet count. Hallelujah for getting out of that place alive. I continued going back for the next year and a half seeing the pulmonologist and oncologist for follow up and treatment of Thrombocytopenia and Antiphospholipid Antibody Syndrome. They were following my INR and doing pulmonary functions tests but I just didn’t seem to have any energy and was always short of breath. During this time I was having trouble with pains in my lower stomach and I was hospitalized with diverticulitis. After two more trips to the emergency room I was admitted and a colon resection was done and they removed about 18 inches of my colon. The morning after surgery I awoke to nurses and doctors running around me frantically, I was having a heart attack. I stayed in the hospital for about a month recovering from the colon surgery and a heart attack. Finally after being discharged from the Army I decided to go to a civilian doctor instead of the military doctors. This was the best move I could have ever made. In the next year I was hospitalized with blood clots in my legs five times, each visit was about two to three weeks long, some longer. Still I wasn’t getting any better; as a matter of fact I was getting worse by the day it seemed. I couldn’t walk 20 feet without stopping to rest, and was passing out almost daily. My doctor sent me to a great Cardiologist who did an echo on me and immediately got on the phone and called a PH Specialist, who is now my doctor, Dr Babar, in a nearby city. I was sent over to his office that day, and he was waiting to see me. Within 15 minutes he was on the phone to Dr Channick, at the Universityof California in San Diego. I was amazed, it seemed like no one else had cared and kept saying that nothing more could be done for me. They talked for about 30 minutes and he told Dr Channick that I would be there the following week. He got off the phone and explained to me what was going to happen. I was about to learn exactly what a Thromboendardirectomy was………in a week. We were scared out of our minds, didn’t know which way to turn, who to talk to, what to do, in a complete panic. That’s when we were told to contact Maureen McCavanah, one of the most wonderful people I’ve ever met. She told us what to do, when we needed to do it, how to do it, and anything and everything else that we asked her. I have never seen anywhere in my life as organized as the hospital at UCSD, I am still truly amazed at to this day. Anyway they did the usual test they had to do to make sure that I needed this surgery. The right heart cath was enough though. I was scheduled to have surgery to remove the blood clots from my lungs (Thromboendardirectomy) in four days due to fact that I had to be taken off the coumadin and given the lovananox injections instead. During this time waiting for the surgery I was assigned to Dr Kim, Dr Channick, and Dr Kerr, my pulmonary team. Later I met Dr Madani and Dr Jamieson who did the actual PTE surgery. Now if you ever wanted to have a team of doctors working on you, there is no possible way that you could find any better than these. I have never seen such professionalism and expertise in all the days of my life. I owe these people my life and I could never express my gratitude enough. The surgery went well and in three weeks I was on my way home, full of expectations that I was cured. Wrong, I still had PH; the clots had been in my lungs and arteries so long that the damage had already been done. Although I was without doubt much better, I could do things that I hadn’t been able to do for years, I still had the shortness of breath, the swelling, the lack of energy, and all the other symptoms of Pulmonary Hypertension, they just weren’t as extreme as they had been. This brings us to the present, where I have been under Dr Babar’s care for a few years, adding medications and trying others, some which are working and some that didn’t. In Dr Babars words, He will not give up on me, and I dayum well better not give up either. I have accepted the fact that this is going to be a long fight, but a fight that I will continue with all my might. I do not fight this fight alone though, my wife Judi, and my two sons Shane and Steve, have been beside me every step of the way. Judi has given more of herself than anyone could ask and has never swayed from my side. She has studied this disease in every aspect and talked with anyone who could give her answers. She would not let me give up when all I wanted was for it to be over. God truly blessed me with a wonderful family. Judi and I have joined the PHA, Pulmonary Hypertension Association, a wonderful organization made up of patients and caretakers, who have been a remarkable source of information and understanding. All of these wonderful people are fighting the same fight, have the same problems, and overall just know exactly what we’re going through with this disease. They are always there for each other, twenty four hours a day, seven days a week, to help with any questions or problems that might arise. * * * * * * *
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I've been out of touch for awhile due to being in & out of the hospital a lot. ( I keep having to have IV lasix to drain all the fluid I retain. They took off 19 lbs the first time , and 29 lbs. this last time. I still look like I swallowed a soccer ball, but hope more will come off at home.) I also made the transplant list June 12 for a double transplant.
I've missed 2 or 3 support group meetings and I'm determined to make the next one!
Listen, if I don't make the next meeting, could you ask our group to do something? Please ask them to always report any malfunctioning equipment they might use. I suffered a severe frostbite wound on my leg last August by the portable oxygen machine I use and went through months and months of painful treatment by a plastic surgeon, including painful debreadment and wearing a wound-vac for weeks. The wound is still healing nearly a year later. When I tried to notify the companies involved, the supplier and the manufacturer, I was told there have never been any other reports of the portable frosting-up and that the bag is insulated well. Actually, the service person said it happens when the oxygen use is high (I was at 4 ltrs) and they just tell their customers to put the unit in a plastic grocery bag when it frosts up! They also said not to lay the portable on its back when using, but this is one of the accepted positions pictured on the label! The manufacturer told me that since there are no other reports of "frositng-up" problems from other people, they must assume the machines are fine!
My goal is to get these machines relabled or recalled. So I need to let as many users as I can know that they must report any problems with their units, (or any medical equipment for that matter) in order to keep all of us protected. Call your oxygen company and report any problems you may have had/have.
I did notify the FDA's Adverse Event department in hopes they could look in to this.
What's the best way to get this kind of info out to PHers?
Thanks for any help you can give me. Jean 7-07
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Occasionally, after specific things have been rattling around in our heads for awhile, there may be a fortunate moment when at least some connections are made. I got lucky. I hope. As I was contemplating, and yes, that's as far as it got, repairing a closet door, it occurred to me that a recent PH Specialist visit which resulted in an outcome similar to that experienced 14 times by a PH patient described elsewhere, may not have been the disaster that it first seemed. Although the physician's impression was incorrect, ("I am not sure you have PH"), I most certainly recognize that he is an exceptional doctor. He is widely recognized as being an expert in certain PH areas and was a very impressive individual. Besides, I am not qualified to evaluate his medical skills, and will not attempt to do so. My disagreement is with the scope of the evaluation. Pulmonary function tests and the six-minute walk are standardized screening and even confirmation features of nearly every pulmonary hypertension assessment conducted in the United States and elsewhere. They formed the basis for his opinion. While statistically sound, these instruments do not address the many different types of PH, resulting in all too common diagnostic delays, disease progression and needless suffering. Clinical indications which can be quantified exist but are not usually detected during standard evaluations; such as presenting problems which are intermittent in terms of symptom intensity, as in sporadic pulmonary hypertension. Chronic thromboembolic PH, that's where the spinner stopped on my wheel, does not necessarily respond to standard evaluation as would idiopathic PH, and so on... I cannot state unequivocally how many different types/classes of PH have been identified, but my last count was between 8 and 10, which is quite likely an underestimate. A subjective issue about which I have received multiple comments from other PH patients involves the use of outward personal appearance as a yardstick for overall health status. At least initially. Many of the replies to "My, you look great today!" are quite humorous and very creative. And ironically, most folks, regardless of their illness, do not wish to show up at their doc for help only to hear about how wonderful they appear! PH in particular is insidious in its tendency to hide beneath a superficial facade of decent health. Diagnostically, right heart catherization is the gold standard, as we all know. Yet even it can be fickle. Today's advanced diagnostic imaging is imperfect. Indispensible of course, but imperfect nonetheless. During my all too common sleepless PH nights, I have reviewed volumes of nationally respected research generated by quality physicians at well-respected institutions, and there is a trend developing toward a more comprehensive clinical assessment. Including not only quantifiable information, the scope is expanding to include what are considered subjective measures, such as quality of life, extent of patient support system and daily functioning, ability to accomplish goals, as well as sleep quality and pain management. After all, if we could all participate in a six-minute walk and the other function tests once a week for a year, if PH existed, it would be hunted down eventually. The alternative is a more inclusive evaluation, drawing from the leading work in multiple areas relative to PH as a class of diseases. In my particular case, employing additional heart catherizations as a diagnostic instrument has been avoided for three years due to "risky" primary and secondary diseases. Consequently, the aforementioned recent, expectation-laden journey to a well-respected teaching hospital, famous for it's experts, resulted in what was perceived by some (and oh, yes, I was a member at first) as basically the end of the story. This rendering, these thoughts, helped me to resolve any doubts and get on with the daily struggle to deal effectively with PH. Don't get me wrong; while I chewed this dilemma every which way and back again, I wasn't having one of those rare 'good days', as I did during the PH assessment. I recall thinking during a pulmonary function test; I know I'm going to hit a home run on this thing, because expiration is not my major challenge. But during a 24/7 O2 and too much TV day, when fatigue steam rolls me, I would have fumbled getting any inspiration worth reporting. I would have fallen asleep and missed the game. Excepting emergencies, timing an evaluation for a highly symptomatic day appears to be a poor approach, at least for me. Which brings me back to that finely considered repair for my closet door, when the realization that the presence of other, perhaps more credible evidence was laying out on my coffee table. I raced, hobbled, banged my O2 bag against myself, but did reach my objective. The haste was necessary lest I forget why I went looking in the first place (oh the PH moments!). My prey was the fall 2009 Issue of the Pulmonary Hypertension Association Newsletter, "Pathlight". Slightly off-task but worth mentioning; I read elsewhere in a PHA publication: "When you can't breathe, nothing else matters." Absolutely no way I can conceive to improve on that sentiment. Two articles I had read seemed not only to be relative to my recent experience, but to the slow but certain transition to a system of PH diagnostic techniques which reaches beyond intrinsically institutional factors. The first, from "Phenomenal Lives", written by a PH patient who was frustrated by multiple misdiagnoses, vividly described the process of delay after delay before diagnosis and treatment were attained. In this case, 14 years transpired before a diagnosis was attained. Her spirit undiminished, this incredibly resilient PH patient is now a stout advocate for PH education, awareness and research. The second article, the one that pulled me in like a hungry rainbow trout, was under "Meet The Doctor", and composed by PHA Medical Education Program Associate Christa Donald and Kaitlyn Benneville, Former PHA Web Services Intern. It features Dr. Stephen Mathai of Johns Hopkins Hospital, and after reading about his approach and objectives and hopes, the establishment of a more comprehensive PH diagnostic evaluation system seems like just a matter of time. Time, however, is and will remain unconcerned and unhelpful for most PH patients. Only continued research and determination will unlock the keys to both diagnosing and treating this terrible disease. "Dr Mathai and his colleagues are attempting to improve the outcome for these patients. He is also interested in developing new tools to measure progress beyond the six-minute walk and lung function tests. Dr. Mathai believes scientific measures should also reflect a patient's quality of life, looking at such areas as depression and anxiety levels, sleep quality and the like". Whatever the cause, I am very grateful my thoughts collided where they did this evening. While my closet door remains neglected, I have a small measure of peace of mind that might convey more strength on a rough day, or two consecutive hours of restorative sleep. Hope is both a very fragile burden and a headstrong, immovable force for change. It is where the inherent discrepancies meet that I believe true progress occurs. And it seems to be happening, thanks to the members of organizations like the Pulmonary Hypertension Association, American Heart and Lung Associations, Dr. Mathai, countless researchers, and all the untenably tough, determined PH patients who do not give up, and our physicians who never settle, never stop learning. So, that likely over-describes my little epiphany. It was a blessing to finally gain more perspective, as PH can consume so much thought and energy. However, I could not drag myself off to some uncomfortable sleeping position and likely visions of the miserable closet door until I provided heartfelt gratitude for one of those PH patient fighters. An unsung hero. I met Merle Reeseman through the PHA hotline and we have been friends ever since. And what a Blessing, indeed. She inspires many and asks for absolutely nothing in return. Her encouragement allows me to consider hope as something other than deferred despair. Also, I would be remiss not to acknowledge my Critical Care/Pulmonary Medicine doc, who has been effectively treating my PH for about six-years. He also helped to save my life during a massive pulmonary embolism in 2006. Humble and dedicated to his patients, this outstanding physician has established such an impressive record that folks come from all over the U.S. to study under him. My PCP is a compassionate young woman who is not intimidated by dealing with tough quality of life issues and pain management. I consider myself both blessed and very lucky to be involved with these physicians. Following my appointment with the PH specialist, I was admittedly quite discouraged. And a good month of learning and introspection and conversations were required before my tiny epiphany occurred. Perhaps now I'll address the home repair issues, but I anticipate continuing to try to improve my understanding of PH whenever and wherever possible. Finally, (yep, I'm nearly finished!), I would like to reach out to the previously described, constantly misdiagnosed PH patient, who indicated in her article that she often wondered and struggled with the idea that God had given her PH and all its' many demons, and it was seemingly too much to bear. May I just suggest, without imposing my personal beliefs, that perhaps God was not responsible for the PH, but for the strength and determination which have enabled her to obtain a proper diagnosis and deal with the debilitating disease. And the battle continues... Rod Richardson -- PH Patient 10-09
Merle Reeseman ~
Support Group Leader
This is from a PHriend. Read carefully what he has to say and never give up on hope or help. It took him approximately 3 years to find the right doc.
Yesterday I saw a Ph Specialist that is very knowledgeable, personable and caring. He confirmed that yes that not only do I have PH but that it needs to be treated. After a long struggle to receive care I finally found a Doctor who will take care of me. The 1st thing he is taking care is managing my fluid level via some guidelines that I probably should have had all along. I now have to take lasix twice a day; if I am up by so much weight a day. He said that in treating PH keeping the fluid is the 1st thing to be done because with the fluid off it will relax the heart and in turn help the PH. I had labs drawn this morning and he will have them drawn monthly, how about that I don’t even have to ask. He plans on putting me on some type of PH med not sure what yet, he is waiting for labs back etc. He is also fully aware and up on that new med Letaris that was just released. They did a short walk test and my Sats dropped to 85 % so he has ordered O2. So maybe now I won’t have to struggle so much to breathe. I have to go back and see him in 4 weeks. Persistence Pays! Mack from AZ 6-27-07 * * * * * * * * * * * * * * * * * * * * * *
This is just a little humor from one of our own and the Flolan Glow.
A while ago there was a thread about how to deal with the redness. Well, here's ours. My daughter and I were shopping at Wal-Mart and I am going up on my dosage, so I'm 'redder' than normal. The woman behind me said I should get some sun screen because in 20 years, I might develop skin cancer. My daughter replied "That would be cool." The woman frowned and switched lines. When we got done laughing, she explained that it would be cool that I would be here in 20 years! Amy 7-3-07
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These are great and should tickle your funny bone.
They sure did put a smile on my face. 7-05-07
Leslie's PH 'toons S.O.B. and other fun issues; well funny afterwards ;O)
This is from a PHriend. Read carefully what he has to say and never give up on hope or help. It took him approximately 3 years to find the right doc.
Yesterday I saw a Ph Specialist that is very knowledgeable, personable and caring. He confirmed that yes that not only do I have PH but that it needs to be treated. After a long struggle to receive care I finally found a Doctor who will take care of me. The 1st thing he is taking care is managing my fluid level via some guidelines that I probably should have had all along. I now have to take lasix twice a day; if I am up by so much weight a day. He said that in treating PH keeping the fluid is the 1st thing to be done because with the fluid off it will relax the heart and in turn help the PH. I had labs drawn this morning and he will have them drawn monthly, how about that I don’t even have to ask. He plans on putting me on some type of PH med not sure what yet, he is waiting for labs back etc. He is also fully aware and up on that new med Letaris that was just released. They did a short walk test and my Sats dropped to 85 % so he has ordered O2. So maybe now I won’t have to struggle so much to breathe. I have to go back and see him in 4 weeks. Persistence Pays! Mack from AZ 6-27-07
Just an FYI from another PHriend. The more info we have the better prepared we can be.i don't remember who, but someone was having a LOT of trouble with the mask... i think they were allergic to the plastic or something? anyhow... i know a lot of us with PH also have sleep apnea and thought this might help someone. i'm not sure why, but i have never had any issue with the CPAP (and now bi-pap). i first used it more than 16 years ago and slept straight for 8 or 9 hours the first time... and felt so darn good when i woke up i swear nobody could take that mask away from me!!! and... trust me... don't know how long (or even IF) you've used the masks, but they are 1000% better than the "early" ones...lol. i mean... the old ones were rigid and it was very difficult to get a close fit... and it seemed the straps attached to everything but the bathroom sink...anyhow... i later saw this article was on the PH list that Corey sends around... but i either didn't get it on that day... or it didn't get transmitted...so... if you've already seen this... oh well! jeannie, tx 7-18-07 http://www.medpagetoday.com/Pulmonary/SleepDisorders/tb/6160
This is from a young man who is also a PHriend. He offers hope for all of us.My journey began late in the 05 year. I was working and going to school full time. i started to notice shortness of breath in the mornings, i thought i was just getting out of shape and didnt worry to much about it. After a few weeks one morning i was pushing out quads, (i worked at a offroad shop) and became very short of breath and passed out. I was rushed to the ER, they told me i had phemonia and sent me home on antibiotics. I took about a week off work and rested, i felt better i think from the rest. I went to a few different primary care doctors which didnt know what to do or what i had. One thought it was asthma and the others werent sure. So one of them scheduled a echo and x-ray. But i couldnt wait any longer i went to a hospital in CA. I had so many doctors looking at me, but they didnt release me tell they found what i had. Im greatful for that decision. It took them about a week of tests and evaluations to get a diagnosis of PPH. When they highly suspected i had ph they sent me to there PH specialist in los angelesfor the RHC and to start treatment. I had the RHC and the doctors explanied my ph was severe and i should start flolan. I didnt hesitate to start flolan, they said it usually works quite well and fast. So i started it the day after my RHC. I didnt mind mixing or any of that. The problem was i had PVOD (pulmonary veno occulsive disease. PVOD is hard to find a correct treatment. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The flolan lowered my PAP but was worsening my pvod. Very hard to understand. By feb i was pretty much bed bound. Anytime i had to walk more than 100 feet it was wheelchair time. I was listed for transplant a few months later and waited 11 days for my transplant. But inbetween those few months i was a regular visitor in the ER and hospital. Im talking out of 6 months i was in the hospital 4. After the transplant i had a great recovery and was a full time walker in the first month. I had 5 months of greatness no problems at all. Then i got hit with a rejection, fungal infection, flu and phemionia within a couple month span. That has slowed me down from my 3 or 4 mile a day walk. The transplant has worked well for me and im glad i got it. There is still bumps all the time for me though. Its much better since im able to function on my own again though. I hope i get a few more quality years and ill be happy. mason 7-12-07
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Pulmonary Hypertension like COPD is more than another "silent killer" it is a dastardly disease. It is not only sneaky because is it often misdiagnosed as asthma or a cardiac problem but as noted in your report about COPD, many doctors do not know what to look for. Awareness and education to the medical profession is a must. Left untreated you may have an average of 30 months and that's if you are lucky. With the proper treatment there is hope but at this time there is no cure and there are very few approved treatments. There are a few PH Centers across the country, but not enough. PH is progressive and fatal.The cost of these medicines is astronomical and can be a great hardship on the patient as many or most can not afford this expense and some insurance companies won''t cover some of the medicines that may be required. Some have endured a great personal sacrifice to try to stay alive.In reference to a report done on CBS September 12, 2007 -- limited to written content
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I have some good news. I went for a regular check-up yesterday, had some additional PFT's along with the normal testing and had a great report. My 6 MW was the third best ever and the results of my PFT's said if I were any better, I'd be almost normal. ;o) My doctor is happy, I am very happy. I am finally getting back to where I was a little over a year ago and that's a very good thing. Now after the appointment, that's another story. While leaving the garage at CCF the brake line broke. We had to be towed 100 miles to almost home in Mercer, PA Am I lucky or what, I just can't imagine what could have happened if the line broke while traveling. Merle 6-26-07
* * * Let’s see… it’s actually difficult to say when I really started getting sick. For several years I had been tired. But, I chalked it up to a full time job, taking care of a home complete with husband, teenagers, and working on a master’s degree.
However, in the fall of 2005, I began to suspect that there might be more to it. I was gaining a lot of weight, and the climb to my 3rd floor classroom (I teach biology) involved several stops along the way. But, I still didn’t do anything except say, well, I need to get in shape and I’m taking two graduate courses and the holidays are always stressful. Well, in December, our school started a wellness program. I found my blood pressure was through the roof, so I decided I had best get to the doctor. Well, my sugar was high, I was obese, and had high blood pressure. So my doctor changed my diet, and put me on a 10,000 steps walking program – which I wasn’t very successful at – I kept getting short of breath, but I still thought I was just out of shape.
Well by February of 2006, things were getting worse and fast. On the up side, my weight was down as well as my blood pressure, but I had passed out while walking up the stairs at school, so my PCP scheduled me for a stress test. I went for the test but never got to take it as the doctor immediately sent me to the emergency room at the hospital across the street to check for blood clots in my lungs.
The next day I got a conference call from my PCP and the cardiologist. You have PH they said, and as of now you are on sick leave. I said say that again, only slower this time. Well, they set me up with all the normal tests through the Cleveland Clinic, culminating with an RHC in late March. By this time however, I couldn’t even walk 10 steps without stopping.
After the RHC, I went straight to the ICU to start Remodulin therapy. But it didn’t work, my cardiac output dropped so low, that it was stopped. The doctor came in and said my only chance was a lung transplant and that the head of the transplant team would come see me the next day, and that they would try flolan. They didn’t have much hope, but maybe it would help. Well suffice it to say, that was rather shocking – also at this time, I still didn’t understand the disease real well either.
Well, the flolan started and I really and truly thought that with all the severe side effects I was having, the treatment was worse than the cure. Anyway, after a week I came home to a summer of sitting around and reading A Patient’s Survival Guide cover to cover.
The good news started coming in June and July, the flolan was working and there was no more need to talk of lung transplants. After that I got clearance to go back to work. The school gave me a fridge and locking cabinet for all my backup supplies and life started to return to ‘normal’.
When I went back for my one year checkup last spring, my PH doctor was very pleased with my progress. He told me “You came as close to not being here as anyone could.” I never knew I was that sick!
I have also discovered that the PH in my case is familial. We found an autopsy report for my aunt who died in 1977, and it listed PH, although no one knew this before her death. And last spring, my young niece was diagnosed as well. She is on Revatio and currently doing well too.
Now, a year and a half after diagnosis, I’m doing better all the time. I’m able to work, teach Sunday school, help with the Music Boosters, and do many things with my family. Also, thanks to Merle’s help and encouragement, I am about to start doing more things politically to help everyone in the PH community. At present I am trying to set up a meeting with my Congressman concerning HR 3368 - The Pulmonary Hypertension Research and Education Act of 2007. Amy Stamp ~ August 7, 2007
On August 21st (and 22nd in Conneaut, OH) I went along with Amy, her son and daughter and 2 of their friends for a Congressional visit to Rep. LaTourette's office. Leah (Amy's daughter) did an excellent presentation for a school project and also requested Congressman LaTourette co-sponsor HR 3368. He said he would upon his return to D.C. after the Labor Day holiday. Merle ~ OHPA
Congressman LaTourette has signed to co-sponsor HR 3368
He has also co-sponsored HR 1030 the newest PH Bill
Life is short, Forgive quickly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.
John, Leah, Dep.Chief of Staff~Dino, Paige & Katie
Amy, Paige, Katie, Congressman Steve LaTourette, Leah, Merle & John
Story about Pictures
I've learned that you shouldn't go through life with a catcher's mitt on both hands. You need to be able to throw something back.
Let me start this day and any day with a new attitude and plenty of gratitude!
Never take someone for granted. Hold every person close to your heart; because you might wake up one day and realize that you've lost a diamond while you were too busy collecting stones.
You can't change the past, but you can ruin the present by worrying over the future!
Take time to laugh for it is the music of the soul.
I have asked several of my new phriends to write their stories to share with whomever may want to read them. Some are from members of this group, some are from phriends many, many miles away. They all know how important it is to share the funny or the serious side of PH. Yes, it is doable as stated below.
Look what Amy and her troops did. Those kids did a great job.
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Maria Martuccio July 9, 2014
So it was 10 years ago today that I'm pretty sure I was this close to dying. Back then, on July 6th, I was admitted to St. Elizabeth's Hospital after passing out in my car for 9 minutes. A few days later, on July 9th, I begged my nurse to let me take a shower. She told me that I wasn't allowed to, but I begged & told her I'd be quick. She eventually let me shower in a bathroom down the hall from my room & as I was drying off & pulling up my underwear, I heard my nurse knock on the door. I told her to hold on & that's the last thing I remember. I passed out. When I came to, the first thing I heard was a code blue siren going off & someone yelling "She has a pulse! Cover her up!" I opened my eyes & there were a lot of people around me as I looked up from the ground. I remember being hot & sweaty & thinking "Oh my God, I'm naked & my underwear is around my thighs!" Then I realized I must've passed out. A guy picked me up & they wheeled me to my room. While the nurse was examining me, I noticed 2 big pads stuck to my chest & I asked her what they were. She said "Honey, you didn't have a pulse & we were ready to shock your heart." Scariest day of my life!! I was then transferred to the Cleveland Clinic & after several days & many tests I was diagnosed with pulmonary hypertension.
MY LIFE BEFORE AND AFTER PAH DIAGNOSIS ~ Deanna Modzelewski
For as long as I can remember, probably since high school, I have always hated stairs and walking up hills. I was always out of breath by the time I got to the top; I thought I was just out of shape. There were other signs too. I played basketball in high school but always felt like I could never really keep up with the team. I went on to college. Walking across campus I would get out of breath especially walking up the small hills to the dining hall, etc.; again I thought I was out of shape. My friends never seemed out of breath or tired. After college, I had an apartment on the second floor. By the time I walked from my car up the stairs to my apartment, I was always so short of breath. But again, didn’t think anything of it. I kept telling myself I needed to exercise (but never did). That was in the late 80’s and early 90’s. Was this a sign of things to come? Did I have PH back then? I don’t know and probably never will, but it sure makes me wonder. Fast forward to 1997. I had returned to school to become a physical therapist assistant. I needed a physical to start my clinical rotation. My blood work came back abnormal which then prompted months of doctor’s appts and test. They were not sure what was wrong with me. Finally I was sent to see a liver specialist at the University of Pittsburgh Medical Center. They determined I had a blood clot in the Portal Vein causing portal hypertension. I also had liver disease (nodular regenerative hyperplasia). They determined the blood clot had been there a very long time. Possibly from birth; possibly from birth control pills. And there was nothing they could do except monitor me and list me for transplant in the future. Fortunately over the next several years, I remained stable. Life was good. I was working as a physical therapist assistant, a job that I really enjoyed but was very physically demanding. I worked with many patients teaching them how to walk again. And working with respiratory patients teaching them how to conserve energy and breathe with activity. Something that I would find myself doing a couple years later…how ironic. While I was working, I found myself getting short of breath a lot but kept telling myself, it was a very physically demanding job and I was just out of shape, or so I thought. Then in March 2003 things started to go downhill. I had traveled to Atlanta, GA to see my brother and his family. After that my ankles started swelling up, my blood pressure was skyrocketing, and I was exhausted all the time. But I kept working. After several dr appts locally, I was again referred to Pittsburgh. My pulmonary valve was leaking and I may need surgery to fix it. Finally on May 1, 2003, I had my first Right Heart Cath. The doc looked at me and said you have pulmonary arterial hypertension. The cause was my portal hypertension and liver disease. I was told: You won’t be having surgery, you will be fine without fixing the valve and you will no longer qualify for a liver transplant either. But I did need treated for the pulmonary hypertension and they would start with a drug called Remodulin. They never explained the severity of my disease. I found that out on my own months later. And now I am kind of glad they didn’t tell me. However, I would not be able to continue with my current job. So all I was worried about was how I would work and pay my bills. I never realized the mortality risk involved until I read the letter my doc had written for me to give to my employer. It said the disease carried a poor prognosis. To this day, I still don’t really believe it. At least for me. Shortly thereafter, I started on Subcutaneous Remodulin. It was not at all what I had pictured in my mind. I thought it would be like an injection like a diabetic would take insulin. WRONG! Oh well, I decided if this was what I had to do to feel better, then that was what I was going to do. I had heard about the site pain and fortunately for me, I had very little to no pain at all. One of the few and very fortunate. That did not last forever though. Over time I eventually developed site pain. Some days it was so bad I felt like quitting and just ripping the catheter out of my body. But my determination prevailed and I learned how to manage the pain by using it on my lower back and upper buttocks for sites. I am back to being pain free most of the time and if I do happen to have pain, it is tolerable. Once I stopped working and started on the Remodulin, I started to see an improvement although it took a few months. And I had to learn my “new normal.” I lived by myself so I had to learn how to take care of myself and manage my disease and do all of my household chores etc. I learned what I could do easily and what was more difficult. I learned not to push myself and not try to get everything done at once. I learned how to pace myself and take breaks so I would not use up all my energy doing one task. A few months went by and I started feeling a lot better. I was approved for disability but I wanted to do more. I still wanted to work so I decided to return to school. I took a few classes at a local college and got a certificate in medical coding. I took classes part-time and was able to manage schoolwork along with maintaining my apt. I was happy about that. The biggest challenge was climbing the stairs and lugging books around the campus. But I would just get there early and take my time walking to class. And I was still able to manage my disease and I was very thankful for that. Then in September of 2005 I was fortunate enough to be hired on at a local hospital as a medical coder. I loved it. Unfortunately, despite it being a sedentary job, full-time was a bit much for me. After about a year, I dropped back to part time and was offered the opportunity to work from home. I continue to work in that capacity to this day and I am very thankful for that. It allows me the opportunity to work and feel like a productive member of society, help maintain a household, AND manage my health at the same time. Throughout my entire life including my diagnosis and the start of my treatment for PH, I had remained a single woman, living by myself. My family was local and they were very supportive but I was still in search for the love of my life. I wondered what would happen now since I had PH and this little pump attached to my body. But in June 2005, I met my now husband Bill. Right away I told him everything about my diagnosis, treatment, not being able to have kids, etc. I wanted to know what he felt about it early on, because if he had a problem with any of it, I was not going to waste my time. To my pleasant surprise, he was fine with all of that!! We ended up getting engaged and then married in September of 2006. Since then we have enjoyed a wonderful life together. And as a caregiver, I couldn’t ask for a more supportive husband. Something else I have done since being diagnosed with PH is travel. My honeymoon was a trip to Florida and a Caribbean cruise. We have taken numerous trips to Florida and just recently drove across the country to Arizona and the Grand Canyon. Traveling with PH is possible. You just need to be prepared. While my PH and liver disease both remain stable, I am now faced with a very large pulmonary artery aneurysm. While there is a risk of rupture (and I would die within minutes if that were to happen), repairing this, in my case, would be even riskier based on the fact that I am doing so well functionally. Therefore, any type of surgery is on hold for now. At times I question this decision in my mind, but in my heart I know that it is the right one, at least for now. So to all of you newbies just diagnosed (and oldies too) the moral of my story is this: Don’t let being diagnosed with PAH stop you from living your life and doing the things that you want to do with your life. Know what your individual limitations are and how to manage your disease. Be happy and thankful to still be living on this earth. Remember that none of us (with or without PH) know when we will be called home. You only get one chance at life, so make it count!!Love and hugs to all of you!!
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Lately I have been asked to do presentations at various "groups"... in mid April a member of the Mercer Area PH Support Group asked if I would speak before his retiree group about pulmonary hypertension. He said they would have one more meeting before their summer break but it was kind of a "political" meeting being the day before the Ohio primaries. Well, you know me my ears perked up when I heard political. He told me I would have about 4 minutes as Congressmen, local and state politicians would be there. I said I guess if I can do something in six minutes on TV, I could do 4 minutes before a group. I asked how many would be attending thinking 25 to 30 (I wanted to be sure I had enough brochures to pass out). He said between 8 and 900. Say what!!!I contacted the Pulmonary Hypertension Association saying I needed a rush for the "Helpful information for patients and families", a brochure for and about pulmonary hypertension. I always have 25 to 50 but not enough for a group that large. The UAW -- yes THE UAW.Paul, my friend, made arrangements to make copies of letters that could be mailed to Federal Representatives and Senators about HR 1030 and S 2803 respectively; the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.Now in April I spoke before a ladies business group about Lupus and Pulmonary Hypertension -- thinking 1/2 hour presentation would be enough, I was told, oh no, you are the key note speaker, take an hour to an hour and a half. So I prepared, I added a little more here, I added a lot more there. I made a power point presentation with pictures and had 28 full pages. I was ready, I "done good". Now I had to switch from Lupus and PH to just pulmonary hypertension and do it all in 4 minutes.This had to be concise and to the point, I wanted to cover symptoms, causes and effects (those side effects) and most importantly cover the research and awareness bill and make it interesting but not too scary. After all, having pulmonary hypertension is scary.May 3rd finally arrived. I was ready and good to go. Tom and I drove over to Boardman, OH to a large conference center. There were 5 or 6 "food stations" around the perimeter of the room for the buffet luncheon that would be served; it is a huge dining room. Round tables for seating 10 with white table clothes were set through out. There were several tables at the entrance with brochures of "VOTE FOR ME" and why. As I mentioned, several politicians were to be there. Brochures and flyers on the dining tables as well. The meeting began, one by one the politicians were asked to speak. Apparently one of the Congressmen was running late so I heard: "Is Merle here now and could she speak"... Woo Hoo -- my turn. I made it to the podium, I was only two rows back.. I had my Flolan (an IV in my chest that goes into my heart) -- attached, I had my portable oxygen tank (canula in the nose) -- attached. I had 3 steps up to the podium; I shut off the pulse on the oxygen and put it on full flow. I didn't want that little puffer noise to distract anyone while I was talking.I started off with "Good Morning" and almost fell over when a booming "Good Morning" came right back at me. Now as I recall, when I've heard or even presented talks when you say good morning or greetings of sorts you might get a meek and mild response if any. Not here, not at the United Auto Workers Local 1112. These men and women let you know they were there and ready to listen.I introduced myself and thanked Paul and the UAW for asking me to speak and then I said: "I have pulmonary hypertension - pulmonary hypertension does not have me"!!I explained what pulmonary hypertension is (Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart) also who may get it; the possible whys and for some no known reason. How it is often misdiagnosed or not diagnosed and how long that process can take. Then the symptoms (Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases) and the bill now before Congress. I finished with a tribute to Paul's sister Betty who died of this dastardly disease last year and thanked them again for the opportunity to speak to them.The Congressman came, did his presentation and told everyone what would be happening in the valley and what he hoped for. Very encouraging. Lunch was then ready.Now on each table there were several letters (but not enough) to either Representatives or Senators and during my presentation I asked that they put their name and address on these and I would mail them or they could and to mail to the local office not the DC office. We gathered over 200 signatures for each Senator and enough letters to mail to 5 Congresspeople throughout Ohio. I need to add that Congressman Tim Ryan has co-sponsored our PH Research and Awarness bill each time it has come before Congress (that's 3 - the most recent being HR 1030) Another Woo Hoo moment.During and after lunch several people came to me saying their sister, or I was just diagnosed, or someone they know may have this disease. I had several "Envelop of Hope" post cards that PHA has, you fill them out mail them in and the PH Association will mail you a packet with lots of info. People brought over the letters to be mailed, one of the members asked if a donation could be made to the association (PHA), it was voted on and agreeded to, then after the meeting there was not one brochure about pulmonary hypertension left on the tables nor any letters -- plenty of the political info :o)THEN a few weeks later I receive a letter from PHA saying I am to be awarded the "Outstanding PH Citizen Award" I would be the 2010 recipient, yours truly, me, myself - I.The letter stated: Awarded to a patient who exemplifies dedication to the Pulmonary Hypertension community through any combination of the following: raising awareness; advocating for PH patients; participating in fundraising efforts; service to PHA; and, helping to provide the public with a voice and face of the PH community. Well, hold me back... What an honor, I was speechless (key word there is WAS) and in awe. I am still flying high -- my local newspaper did an article about it and tomorrow a local TV station is coming for an interview. Merle June - 2010
You Go Zahi....
‘Walk for Cure’ to raise funds for Pulmonary Hypertension Association
9/18/2008 - West Side Leader Letter to the Editor
Because your newspaper is family-oriented and read in the Akron area, I am seeking your assistance to publicize a terminal disease that affects more than 100,000 individuals in the United States. There is no known cure for this disease. Only medication is available to make living easier and cope with the activities of daily living.
This disease is described as progressive and fatal and causes blood vessels in the lung to thicken, restricting blood flow, and therefore making the right side of the heart overwork and lead to heart failure. It can be a silent killer but also can be treatable and, therefore, prolong one’s life. Studies show that most patients experience a one-year delay between the onset of symptoms and confirmed diagnosis of pulmonary hypertension (PH).
Because of the rarity of this disease, most doctors do not know what it is. It can be present in all ages and does not discriminate with male or female or ethnic background but is most common in women of childbearing years. It is often misdiagnosed or overlooked as a lung disorder or as a complication of a large number of respiratory or cardiac disease complications. But remember, with proper treatment one can maintain a somewhat normal life.
I was diagnosed with PH two years ago. My life has been affected by this disease to the point that I have to have a high flow of oxygen 24/7 and several medications to help me breathe better to enable me to move around with less shortness of breath. “Walk for the Cure,” a fund-raiser to increase awareness of the disease, will take place Sept. 20 at 11 a.m. at the Wadsworth Shelter in Sand Run Metro Park. Registration is $10 per person or $25 per family. There will be food (low sodium) donated by drug companies and the Cleveland Clinic Pulmonary Hypertension Department to help raise money for the Pulmonary Hypertension Association for research.
Zahi Kakish, West Akron
A moment of truth from a PHriend of mine ~ actually, we're almost cousins... and should make you smile
This morning at about 7 am, I was driving up to the hospital for pulmonary rehab. I was listening to Mick Jaggar sing about Brown Sugar, and driving my Very Cool Car at a Very Cool rate of speed.
Just as I came up to the exit to go to the hospital, The Evil Blue Lights of the State Police began to flash behind me, and I knew I was got.
I pulled over to the side of the road, and immediately grabbed my cannula and turned on my concentrator, while grabbing my license and insurance card.
When the State Policeman walked up to my car, he asked if I knew why he stopped me. I told him that I wasn't sure, but I was certain that he could tell me. I told him that I was certain that I was supposed to be at the hospital at 7 am, weakly pointing at my clock. (It was absolutely true, too. I just didn't say that you don't get demerits for being late to the gym.) He said I was going 61 in a 45 zone. I told him that was possible.
I looked as pathetic as humanly possible, which, when I'm going to the gym at 7 am, isn't all that hard.
He went back to his car, then returned, and told me that instead of giving me a big expensive speeding ticket, he was only giving me a ticket for "failure to obey a traffic sign." One that said "Drive 45 mph".
Today I am The Windshield.
Let's hear it for cannulas and looking pathetic. Mrs.Harris 7-06-07
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My PH Story ~ David J. Grady
On June 13, 2008 I went for a routine physical exam. Everything seemed fine until I heard the Doctor tell the Nurse he thought the EKG machine was broken after my test. I knew then the machine was fine and something was wrong. I was given another test and I then met the Doctor in his office. He told me the EKG test showed the right side of my heart was abnormal compared to the test 2 years ago. He was not positive but thought I might have Pulmonary Hypertension. My Journey with PH had just started. During the past 18 months I was short of breath at times and had a nagging dry cough. I have a slight case of asthma so those meds were increased. I was given breathing tests which I passed with no problem. When I had my physical I learned the right side of my heart was dilated and he explained PH to me. He tried to reach a cardiologist to get me in but since it was Friday afternoon the Doctor had left for the day. My Doctor said he would make an appointment for me to see the cardiologist on the following Monday. I had a lot of questions but thought of them as I was driving home (in a daze). I could not go back to work as a Police Officer, a job I have had since College (18 yrs). How do I tell my wife? How do I provide for us? What is the cure for this (ha ha I didn’t know; give me a break)? I drove to work and explained I needed to be off work until I had some further tests. I did not know it would be my last day as a Police Officer. Everyone at work was very understanding and then I drove home. I then went and looked up PH on the internet. I soon learned my life was changing and how serious PH is. I thought I was going to die in a couple of years after reading some articles on the net. I did not know anything about PH and did not know who to talk to about my condition. It was a very long weekend to say the least. The following Monday I met with the cardiologist and had an echocardiogram done. Neither the Doctor nor the Nurse seemed really concerned and I thought my weekend of worrying was stupid as I drove back home. I was told I would get a phone call with the results. The next morning I received a call from the Hospital asking how soon I could get there for a cat-scan. My wife was going to work and said she would take me. I said I’m fine and just go to work. I knew my weekend of worrying was not wasted as I drove to the Hospital. I had a cat-scan and had to wait for the Doctor to review the test. After two hours I was told to come back tomorrow for a right heart catheterization. To say I was in shock is to put it mildly. I had to keep up a brave face but I was really scared. I had a 4:30 pm (I still remember the time) appointment and had to be there by 3:00 pm. I walked in and all I saw were old people (no offense to anyone just my experience). I was 43 at the time and brought down the median age to 60; just kidding. As I walked in with my wife an older guy said good luck kid. I was taken in to the pre-op room and had the IV put in. I hate needles so I just wanted to leave. I was wheeled in a large cold room and given some drug which "knocked me out." I woke up and was wheeled back to my room and saw my wife. The Doctor came in and said I had a severe case of Pulmonary Hypertension with a pressure of 122. He said he only dealt with PH once every 2-3 years and was going to get me into the Cleveland Clinic. I had just hit the bad lotto. I did not know anyone with PH and never heard about until the previous week. Who would treat me? What treatments were there for me? All these questions as I was wheeled to the door to meet my wife (no I wasn’t too lazy to walk, Hospital procedure). I had to wait a couple of weeks to get an appointment (I don’t remember the exact date and it does not change this riveting story) at The Cleveland Clinic. It was a very long wait mentally. I am not being dramatic when I say this but I was not very optimistic after my tests and the internet articles about a long life. I finally had my appointment and met two wonderful people Dr. Joseph Parambil and RN Nancy Bair. At the time I did not know how lucky I was to be under their care. Dr. Parambil was very positive and said not to read the internet articles because most were outdated. I had an ECHO, MRI of my heart, and a six minute walk test. He then prescribed Revatio 20mg 3x a day. He said I would feel better soon. The down side was my career as a Police Officer was over. I tried to keep positive but inside I was devastated. This was a job I had wanted to do since I was a kid and I did it; not many do that in life. In the last few weeks our lives had been flipped upside down. I tried to keep a brave face on for everyone but it was not an easy time. I got my prescription filled and sat with Nancy Bair for two hours to see how I reacted to the medicine. I tolerated the medicine with no side effects. Nancy was very nice and answered all my questions. Three months later my pressure dropped and my six min walk increased 300 ft (I was paying attention). Dr Parambil was encouraged and kept my spirits up during this tough time. For the next 15 mos. my six minute walk test has increased and I feel pretty good. This disease is very tough to deal with and I wont lie and say its been easy. It’s hard going from being an active man and leaving a job I loved. I have tried to be strong so my wife and others do not worry about me. I have met some wonderful people at the Cleveland Clinic Summit and at the Cleveland Area PH Support Group. I know my life will never be the same but I am excited with new treatments and all the research that is being done to find a cure for PH. I hope this story helps someone who gets diagnosed with PH. You know that there are others out here with the same questions/concerns. So do not feel alone. I was asked to write this by Merle Reeseman, Support Group Leader; and I put it off for several weeks. I finally sat down and wrote my thoughts and feelings and I am glad I did. Thanks Merle February 2010