today is the first day of the rest of my life

I have always appreciated this saying, as it makes one realize that every day is an opportunity to make our day count.  Now as I begin my walk with PH it seems to especially apply.  One of the main reasons I am writing in this diary is so that I can be honest with myself about what I am going through.  To have to put my thoughts out for everyone to see forces me to try to be totally honest in my reflections. I tend to cope by pretending the source of problem isn't there, but that is not coping, it is lying to myself. I recognize that some days I might be writing more emotionally than rationally, but even that will become apparent as I write about my journey.  I hope some day it will help provide some answers as to what a person with PH can expect as a possibility, though I know we do not all go through the same things.  This is my first reaction, where can I find out more about it, how can it affect the one who is afflicted and what kind of an impact does it have on those who love them.  I am fortunate to have a very close relationship with my husband Larry and an even closer relationship with my Lord and Savior Jesus Christ.  God is so good and I know that even though my loving husband may be limited in what he can do to support me, I have unlimited support from God.  I am starting this journey asking for healing, but I recognize and can accept that might not be what God has for me.  I have had previous experiences of God healing me in the past and also of not healing and I have experienced His peace that passeth understanding as well. God be with me and with those I come in contact with. Last spring I was having chest pain, racing heart, trouble breathing and weakness.  I was given a diagnosis of PH and sent to a specialist (not a PH specialist).  I went to my church family for prayer for healing.  As we prayed I literally felt the heaviness on my chest leave me.  I had one more test left where I had to check the capacity of my lungs.After months of tests and appointments the conclusion was I did not have PH , but if I did it was too minor to show. I still had Crohn's which I've had for seven years now, but the verdict was "active, no symptoms".   I was thrilled.  I was given a followup appointment for fall and to help me remember I made it the same day as my dad's birthday, Sept. 15.  In August I began having problems with an erratic heart beat.  It wasn't until the beginning of September when I had a series of "attacks".  But they were able to catch it and "see" it, so I was given the diagnosis of Atrial Fibrillation.  My right atrium was enlarged and I was getting electical impuses from more than one source so my heart "quivered" instead of pumped.  I was going in and out of this spontaneously.  They gave me medication to control and regulate my heart and warfarin to thin my blood to prevent stroke.  They told me I needed to schedule an echocardiogram, but I already had one booked.  Well the diagnosis was PH.  It was a shock to me and it took me a while to comprehend.  It was also hard on my family.  I have four adult children, three of which are married, three grandchildren aged from 5 months to four years and I was just informed another on the way in June.  Anyway, I have in this past week (I was told a week ago last Wednesday) gone through a series of emotional ups and downs, trying to get answers of what this disease if all about.  I found a fair amount of help through the internet and also found some answers by reading others diaries, thank you to all who open up and share your lives with others.  Two days ago I had a really rough day coping and spent the day ignoring what I had and then when it came to mind, I would bawl.  I knew I had to learn to cope with it and I better start now, so I've been building a support group around me and my husband.  I find people don't really understand that my husband needs this as well, but they are standing with us both and for that I am grateful.  We too have decided to take one day at a time and have decided to take a trip to Newfoundland which we have always wanted to do, as soon as we could afford it.  I would like to travel before I get tied down with equipment, though I don't know how long that will be.  We are aiming for August of 2005.  We've just moved to an acreage so we are determined to enjoy life to it's fullest.  As I am already feeling quite weak, we are talking about getting someone to come in and clean once or twice a week.  Cost is a concern, but we need to do something.  I want to do as much as I can each day and take things as they come, I am grateful for the time I have been given to share with my family, each day is more precious to me now than ever.  I know that if I am not healed, there are difficult times ahead, but I know God will give me the strength to bear them.

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Today was a very good day for me, I had energy and was able to go to church, worship (I love to sing) and listen to an excellent sermon on thankfulness.  It ended with a young couple sharing their story of what they've been going through in the last seven months. The husband was in an accident at work where he got drug into the PTO of a large truck.  He was paralyzed from the chest down, and they had told his wife that if he didn't have feeling in his legs by the end of the first week, he would never walk.  Well, he has recently gotten feeling in his lower limbs and can stand up to three minutes.  It was very exciting to see!  I began to get a pain in my chest at the end, and my husband looked at me and asked if I was alright, my face was beet red,so I went up for prayer, I was no longer in pain!  I spent the afternoon at my daughters, who did the cooking for our thanksgiving dinner.  I am still feeling good and I love it! Thankyou Lord!!

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today is still the first day of the rest of my life

Well, here I am diary, it's been a busy, but a good week.  Monday and Tuesday I felt so full of energy, and yesterday I had my blood test (INR) and my visit with my doctor.  I finally remembered to ask him which type of PH do I have and he confirmed PPH or primary pulmonary hypertension.  Wow, what a word, no wonder they shorten it!  Anyway, I was told that I qualified for homecare.  On days that I fel rough, I can sure see it, but on days when I feel good, it's hard for me to validate the need for it.  I am taking some steps to get a support group around me, and part of that is taking advantage of counselling available through my husbands job.  Yesterday was my first day.  Judy was great, and gave me a book to read called "to begin again".  It's about dealing with loss, which she tells me is basically where I'm at right now, dealing with the plans that will probably not happen.  This has changed our lives and our goals, but we will still try to fulfil them as much as we can.  She also told me I have great coping skills.  I'm a doer by nature so I went to buy some yarn.  My plan is to teach myself to knit when I am having my weaker times and can't do much more than sit.  That way I will still feel good about doing something and it will refocus me.  I have tons of instruction manuals for knitting, cricheting and needlework, as well as sewing.  I always said "when I have time", well now I probably will.  I look forward to learning.  Years ago when my children were small I knit mittens for them and touques, but that is the only project I did, and I've forgotten how and I no longer have the pattern.  I want to find another one.  I'm looking forward to this!  One phenomena that I didn't expect is that I find myself (a non-shopper) with an irresistable urge to shop for household things.  Bedding, shelving, etc.  I bought myself blankets which we needed and a steam cleaner for carpeting.  But mostly I just want to buy.  I shared this with Judy and she kind of chuckled and said that I was probably doing it because shopping is fun, and I probably am wanting to put my house in order since I don't know what tomorrow will bring.  This is not talking about death, but my ability physically to do what I want to do.  I agreed with her, but it's kind of funny, since I've never been the housekeeping type.  I've always had to make myself do my housework and then reard myself with things I'd rather do.  Now I want to clean house because I might not always be able to do it? Go figure.  Now I have a "good excuse" not to and I am only willing to have help if I absolutely want to?  It sounds like a child who doesn't want to play with a toy until somebody else has it (smile).  Oh well, back to the shopping thing, she warned me not to get overzealous or that would lead to trouble and guilt.  But she did advise me to make a list of things I enjoy doing and make a point of doing them.  Hmmm, let's see, playing my guitar, singing, arts and crafts, photograpy (especially of my grandchildren), playing with my two dogs Mitzy and Georgio.(they are only pups now, but I plan to breed them and sell puppies.  Mitzy is a Shitzu and Georgio is Bichon Freise (not sure of spelling, better check that out befor I advertise the puppies for sale, there's still time). Back to what I like to do, writing poetry and songs, listening to music, reading, researching, going for walks, and especially, especially spending time with my husband.  I saved the best for last.  Anyway, I've got to go, my dishes await and I wouldn't want to disappoint them (smile) My grandchildren are coming tomorrow to stay with me for the weekend, they are four and one.  The four year old is very helpful with her little brother if I need her to be.  Something more to look forward to , life is good!

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quiet saturday

It seems almost unbelievable, but I have actially had a quiet day with my two grandchildren, A is one and T is 4.  They are very precious and I love it when they can come and stay with me.  They've spent a long time playing outside (it snowed last night and is still snowing today), now A is napping, but should be waking up soon.  I feel fine physically, except I feel drained of energy.  There is no shortness of breath today, or pain, except for a slight headache, yet I have been trying to motivate myself to get my housework done.  I'm feeling a little down, though I have absolutely no reason to, just tired I guess.  Anyway, I just thought I'd say hi and wish you a good day.  Maybe I'll let T play my "rockin tar" as she calls my guitar.  They will be with me for two more days, so I want to make the most of it.  T and I built a berry basket centerpiece (with coloured leaves, pine cones, red berries and rosehips) the last time she was here, just before Thanksgiving, and I want to do something special with them this time as well.  Make a memory you might say.  T is so sweet, helping me with dishes is special to her.  A is happy just to follow the pups around.  I guess it's dishes for now, and then, well, we'll see.  I'll let you know what we came up with when we come up with it.

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quiet saturday

It seems almost unbelievable, but I have actially had a quiet day with my two grandchildren, A is one and T is 4.  They are very precious and I love it when they can come and stay with me.  They've spent a long time playing outside (it snowed last night and is still snowing today), now A is napping, but should be waking up soon.  I feel fine physically, except I feel drained of energy.  There is no shortness of breath today, or pain, except for a slight headache, yet I have been trying to motivate myself to get my housework done.  I'm feeling a little down, though I have absolutely no reason to, just tired I guess.  Anyway, I just thought I'd say hi and wish you a good day.  Maybe I'll let T play my "rockin tar" as she calls my guitar.  They will be with me for two more days, so I want to make the most of it.  T and I built a berry basket centerpiece (with coloured leaves, pine cones, red berries and rosehips) the last time she was here, just before Thanksgiving, and I want to do something special with them this time as well.  Make a memory you might say.  T is so sweet, helping me with dishes is special to her.  A is happy just to follow the pups around.  I guess it's dishes for now, and then, well, we'll see.  I'll let you know what we came up with when we come up with it.

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same ol' same ol'

Hi, it's Monday and my darling hubby starts his new job today, he wasn't going to take it because it looked like it would take him away from home more.  However, with my encouragment, he went and took it.  I didn't want him to miss a job that he's wanted since the 80's because I'm not as well as I would like to be.  As it turns out, he will actually be home more than before (nice surprise), but only time will tell for sure.  Anyway, he is excited and I am happy for him.  For myself, I am determined to get my dishes done today.  I can't believe how tired I am today.  I've been like this for almost a week, just don't seem to have the energy.  Even the smallest tasks look large to me today.  I look forward to coming out of this slump that I find myself in.  I don't have a lot to share today, except my counselor is going to go over a "wellness" program with the aim of helping me to be "the best I can be".  On days like today, that sounds really good.  It is hard to wait until Wednesday for my doctors appointment.  He's been closed since Thursday, and my not be back on Wednesday.  I'm thinking of switching to another doctor because he still hasn't set up my pulmonoligist visit and after my appointment this week, he is gone again for another six weeks.  I don't intend to leave his office until my appointment is booked or at least the pulmonoligist dept. is contacted to arrange for an appointment for me.  I find it more than a little disconcerting since I was told by the cardiologist ( in emergency hospital) to wait until my echocardiogram was done and then get my appointment.  The results were back before the 20th of September, here it is just about November and my physician hasn't even made initial contact with a specialist for me.  I am told early, accurate diagnosis is important and I need to see a pulmonoligist for confirmation and treatment.  Two more days, unless he's not back from his weekend road trip, then I'll have to wait till Thursday.  Anyway, it's nice to express it to somebody, can't change the waiting time, but it's good to vent sometimes.  I am feeling very alone right now.  My husband is a real sweetie and is doing everything he can to make me happy.  I feel guilty for feeling this way and I hate feeling this way.  I just can't seem to shake it.  Hope tomorrow is a better day.  I'm just so tired.  I haven't even got out of my housecoat yet.  I better smarten up and make myself get dressed and do something.  Anyway, see you later.

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here goes nothing....

Well, dear diary, it's finally happened, I just got a call from Dr. Eric Wong's office and I have an appointment for the 23 of November.  Just over three weeks away.  We will go down and stay with family.  It is a 5 hour drive to Edmonton, Alberta, so it's way better than having to go to Quebec or Ontario!  I am nervous but also I am happy that there is now a chance to find out "where I'm at on the "PH scale".  I had my first visit from a homecare worker today.  Simone is very sociable, and cleaned my bathroom top to bottom, changed the sheets on our bed, vacumned our living room and hall, and washed the kitchen floor, all in a space of about three hours, all while chatting with me about my dogs, her dogs and family.  It was a great visit.  I tried to make my lunch but got dizzy, so she even brought my soup to me when it was ready.  She will come every second week.  This helps me out tremendously, since I lose energy so quickly.  I'm having a "dizzy day" today. Smile.  My own doctor has left me feeling frustrated since he thinks I'm really quite healthy, except for the PH, but he finally did a referral anyway.  He seemed surprised when I told him how weak and dizzy I've been, I think he forgets my case most of the time.  But now I have a chance of seeing someone who knows about PH! Hurrah! Can't type anymore, the keys are moving, see ya later!

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yoyo time

Sometimes I really think I'm losing it.  I've always considered myself fairly stable, but here I am, thinking too much.  I'm not much help to anyone right now, I can't help by getting a job.  It's hard to see my worth at times.  I know that isn't the only value I have but I am disappointed to not being able to contrtibute much.  Maybe when I see the pulmonologist, Nov. 23, he can get me on track and I can start getting some energy again.  I feel so lazy, no one else is telling me I am, I just feel that way myself.  There is a saying "if wishes were horses, all beggars would ride."  I feel like I could give a lot of horses away right now.  Yesterday I was not struggling with this.  Today, with a heaviness on my chest, like a weight on it, I find myself drained.  I almost didn't even come to type this letter, dear diary.  Since I am no longer able to work, I spent some time on the phone today to see if I would qualify for some financial help.  I found out I haven't been paying into my Canada Pension plan long enough to collect.  I've only worked the last four years and you need to have worked six.  I was self employed as a dayhome provider for children for the last two, so I never had employment insurance.  I did manage to make the bed today and do some dishes.  Now I have got to get enough energy to make supper.  I can hardly wait until that appointment.  At the same time I don't want to get my hopes too high, I don't want to set myself up for a fall but "wouldn't it be loverly".  I tried to play my guitar today, but I didn't enjoy it.  I am sure that after a good night's sleep, I wil have a different outlook tomorrow.  I'm glad God doesn't mind us having "bad days".  He knows our very innermost being, so I might as well be honest, right?

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Glory to the Newborn King

I've been listening to my "christmas music" for the last week.  I enjoy it so much, I always try to make my "season" long.  I've had a fairly good week, or at least since my last diary entry.  As predicted, a goodnights sleep and it made a world of difference!  That day I spent baking jumbo raisin cookies!  It has been a long time since I could bake.  I didn't get anything else done that day except make a "hamburger helper" supper.  I find as long as I take my time and take lots of breaks, I definitely make headway and can get a few things done.  Saturday was a "tired" day for me, so I picked up my knitting needles and began to learn to knit all over again.  I am starting with a simple project, a scarf, but I like it for the same reason I enjoy baking, one can see the results of their efforts,( unlike housecleaning when you have a family,(smile).  Anyway, my husband is spoiling me and is going to help me set up the Christmas tree this week.  I look so forward to it.  He usually complains when I "jump the gun", but mostly it's in good humor, and there is no guarantee that he won't complain this time, even as he is helping me (smile).  When we moved into this house back in June, that was what I thought of when I looked at the inside, it'll look great decorated for Christmas.  I figured out later that it was the "ski lodge" wood walls that gave the effect, which reminded me of winter, and obviously also Christmas.  I would love to celebrate Jesus birthday year round but I better not push it (smile).  As you can see, I am smiling a lot today, so it should be obvious I am having a better day today.  Yesterday was very tiring, we went to church then had a meeting afterwards.  We said goodby to our friends since we have decided to attend a church that is closer to where we have moved to.  This will be easier on me, and I will probably be able to participate more without the distance I've had to travel the last few months.  It will also let us get to know our community better, which is also a good thing.  Anyway back to today, my plans are to practice my guitar(lessons are tomorrow), tidy up and plan a supper for hubby).  I also have to remember to phone the hospital today to make arrangements to get my chest x-ray film for the pumonologist.  Then I need to phone the doctor standing in for my family physician to get my medical files pertaining to my PH.  I am planning to follow Cheryl's advice and get my own medical file going.  This is my last week on Amiodarone. I finish Friday, and I don't know what effect that will have on me, time will tell.  That leaves me on my daily aspirin and vitamin supplement.  Yesterday I finished the meds for my ear infection so hopefully that won't come back too soon.  I wish you a merry Christmas.....

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Another day, another--------------------

I guess everyone has to fill their own word in.  Mine is scarf, I'm almost finished my first one and it is not looking too bad, I dare say.  Today was uneventful, but I am feeling tired as usual.  I think after my entry and reading others, I will be going to bed.  It'll probably be eight before I'm ready to go to bed though.Hubby is gone away because of work, and won't be back till Friday probably.  Meanwhile I tend to not eat as well when he is gone.  I've always had difficulty cooking just for myself.  I've had a cheese sandwich followed by a glass of apple juice and a raisin cookie.  Sounds appetizing doesn't it. Oh well, it is all healthy food.  Tomorrow is Remebrance Day here in Canada, but I don't think I will attend the services that are held in the area, it depends how I am feeling.  I don't really have a lot to say today but wanted to keep in touch anyway.  I hope everyone has a good week.

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The results are in...

I just got back from the doctors where I got a copy of my echocardiogram results from Sept. 15.  I'm supposed to have them with me when I see my specialist.  My X-ray shows my heart is larger than the last xray that was taken ( I'm not even sure now when that was, I believe one year ago.) and the report from the echo says my reading is 50-55 (estimate) and is classified as moderate.  Is my doctor right in saying they won't do anything for me but schedule me for follow-up?  I do know I was told I had very mild PH just last spring and now it is "moderate".  How long until it's severe I don't know but I'd sure like to find out.  Anyway, I had two nice surprises today.  Tomorrow is my birthday and since I was in town, my two children who live there gave me my presents early.  I was taken out for lunch by my oldest son (very nice) and my daughter (actually my granddaughter couldn't wait to give it to me) gave me the first Kaylan Porter CD single that he put out "Awake in a Dream".  For those of you who don't know, he is this years Canadian Idol and I do enjoy his singing.  The fact that he is from Alberta has nothing to do with it, honest.  He supposedly has a full CD of songs out as well, but my daughter said they weren't up in this country as yet.  I also recieved a lovely bracelet, very delicate, with tiny hearts and "I love you Mom" engraved on them.  And on top of this, my hubby comes home tonight.  He's been seven hours further north than we are, waiting to be able to do his job (oilfield related), and it was put off for two days now.  He told me last night that he talked to his boss and he's coming home tonight whether the jobs done or not (he was supposed to start days off on Wednesday, but said he would work Wednesday and Thursday if they needed him.  He has to go back on call 24/7 next Tuesday, so he needs some time off!  I look forward to having him home.  He is going to install a woodstove we recently purchased to help with heating costs and he plans to go out and get some wood as well,so he'll be busy!  All in all it's been agood day for me and in spite of all the driving I've done today and all the activity, though a little tired, I feel pretty good.  Today is the last day of my heart meds so I'm waiting to see if there is a difference in that. Talk to y'all later!

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The end of a looong day

I woke up today at 10:20 this a.m.  What a surprise, it's been ages since i could sleep 4 hours without interruption.  I think it's my breathing waking me up, but obviously no problem last night.  One more week until my PH appointment.  I can hardly wait, maybe by then I'll have some answers instead of just questions.  Larry got home Saturday night and was putting in a wood heater today, but we had to make a trip to town today while he was home.  He took tomorrow off since he worked extra days and will be going back to work on Wednesday.  My home care worker couldn't make it today because the roads were too icy (it's raining out).  I'm glad we have studded winter tires.  It was still very icy and we slid around a bit, but we were able to keep our vehicle where it was supposed to be.  Only the side country roads are a problem, though I imagine when the highway freezes tonight it will be slick as well,  Yesterday while I was in church I got a little thought that hadn't occurred to me before.  I've always known it was a sacrifice for Jesus when he was crucified on the cross, but I never fully understood how much, and I'm sure I still don't.  Yesterday I was thinking that I am not afraid of death because I believe I have eternal life through Christ, but the hard part is knowing I will be leaving family and friends behind that will be hurting because of my death.  Not only that, but they are hurting now as they help me cope with my symptoms.  My insight was this, Yes Jesus knew he was going to be raised on the third day to eternal life, but he also had friends and family that were being left here on earth, and they would have a hard time with Him gone.  Jesus experienced the same feelings I have experienced because He knew He was destined to die.  The difference was He had a choice and He chose to sacrifice in order that we might live and have a personal relationship with Him. WOW!

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O Christmas Tree, O Christmas Tree...

That's right all you skeptics,  I got my tree up today.  I woke up feeling very good today so up went the tree and a few window lights as well.  Kind of overdid it but it's done and hubby and I were able to relax in front of the fire (he got the wood heater installed as well, yeah) all nice and cosy.  What a lovely, relaxing way to spend an evening, Christmas music playing softly in the background, snow falling outside.  It's as good as it gets (I think), just like a Christmas card.  Our two dogs were very curious about everything and Georgio already tried to sniff the heater but backed off quickly.  Now they like to lay on the rug a nice safe distance from the fire.  Smart dogs, didn't take them long to figure that one out!  I was a little concerned about how the wood heater would affect my breathing but so far no problem.  All the best!

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Here we go again

Well I guess I'm not doing as well today as I have been the last four days.  I was up at four a.m. when hubby got up to go to work at five.  After going to bed again I slept well past nine, almost ten. I have the burning in my lungs again and not a whole lot of energy, but I'm still better off than some of my other days. I think it is a good day to rest since I having a faster heartbeat this a.m. Probably back to knitting today, maybe some guitar practice after if I feel up to it. I love the ease of doing laundry in this day and age, just drop it in the washer and go.  If i had to scrub on a scrub board I'd be hooped (pooped??smile).Anyway I got one load done this a.m., now just put it in the dryer and it's done. Dishes are another story, they await.  I will start them a bit later and see how far I get. We were hoping to leave for Edmonton tomorrow and spend some time with family, but I guess it will have to be short and sweet on Monday and Wednesday since Larry is probably working tomorrow.  At Christmas we will get to visit for SURE(???). We are planning on it and it's Larry's days off.  Anyway I am feeling to tired to sit at the computer See you later Dear Diary.

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Questions, questions, questions

I hope all my American friends had a happy Thanksgiving!  My appointment on Tuesday didn't bring the answers I was hoping for.  Apparently my doctor didn't send enough info to the PH specialist (next to none) for him to have a clue what's going on.  He said based on the info he had he couldn't say whether my PH was primary or not.  He did do a lot of tests, chest x-rays, facial x-rays, the usual urine sample and 11 vials of blood worth of blood tests plus a very painful blood test from the wrist that will check the O2 present in the blood.  This last one she commented that I was one of the unfortunate few that had nerve endings close to where they needed to draw from, why am I not surprised!  Anyway, he will be contacting the doctor who is taking over for my GP while he is on holidays, as well as the specialist from last spring who told me I did not have PH to get the info he wants.  He wouldn't give me an idea how long it would take, but he said he would let me know.  I will be having more tests at the hospital in Grande Prairie, which is a lot closer.  I'd sure like to get a little more info and can hardly wait until I start getting some results back!  It has been such a waiting game.  The worst day for me this week was the day they did the tests, I felt awful from the get go! By evening I was feeling tired but not as bad as I had earlier.  I do feel good today and I even have my grandchildren with me today.  Last night "Grandpa" took our little granddaughter to the local store to pick up some hot chocolate we were all craving.  When he got there he asked her if she remembered what he was supposed to get.  Her answer came back swiftly, hot chocolate and junk food!  He was still chuckling when he got home, but of course he couldn't resist getting her a little bag of her favorite candy!  Talk to you later dear diary.

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Almost

I almost feel really good. I almost can imagine myself to be full of good health.  It's great to have some energy again and be able to "do something".  Just packing in wood for the heater (though just a few blocks at a time) gives me a sense of accomplishment.  I woke up early at four and almost stayed up for the day, gave in and went back to bed at 7:30, slept till 8:30 (almost).  It's almost warm outside (-1C) and I'm almost ready for breakfast and then my few chores! Almost.  Ever have one of those days where your body is telling you one thing and your mind is telling you another?  Are you almost confused?  Never mind, I'm just in that state of mind where the waiting is getting to me.  I hate not having information, at least an explanation of why I am feeling the way I do.  I almost feel like it is driving me crazy (almost).  I'll hang in there and continue to wait, what other choice do I have?  I have no idea how long these things are supposed to take, and I don't know if I can call the specialist or not.  When I read others diaries it seems as if they get their tests and results the same day.  Oh well, I'm almost sure an answer of some kind will be coming soon.  Until then, I'll almost be patient.

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too complicated

It has been a rather frustrating day all around, though it started out great.  Larry's first days off in a long time started today, and he was very tired.  So tired in fact, he did the unimaginable (for him).  He slept in spurts until about noon, AMAZING.  I phoned the local doctor who said he was taking patients.  I went to see him today to let him get aquainted with my case so the specialist can contact him about the results and he's not in the dark.  He was not expecting what he got and said he didn't have the time to put into my care, it was much too complicated. He said one doctor had left the area and another one was coming to take his place and would be taking new patients, but isn't going to be here until January. I felt very frustrated.  He said he understood my frustration and what I can do is get Dr. Wong to send the test results to them and they would forward them to the new doctor.  I'm not sure how that is going to work.  I got a call from the specialist that saw me last spring and who had said I didn't have PH.  She got the results from my echo cardiogram and is now back in the country as the receptionist put it, so she wants me to come in to review my case.  Dr. Wong has not gotten ahold of her yet so she has no idea at the moment about my heart and lung trouble.  I made an appointment to see her next week.  I wish I could just see Dr. Wong and have him handle everything, but since it is so far away, he wants to work with my doctor up here and take care of it that way.  Trouble is, who is my doctor up here!  Should I be switching at this critical point of trying to get all my info together?  I don't think I can rely on my practitioner to bother to really know my case.  Perhaps Dr. Strelke (the specialist from last spring) can do the consultation and ongoing treatment, I don't know. It almost makes one want to move!

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here we go again

Well dear diary, I had another atrial fibrilation attack last night.  I have felt so good lately, yesterday especially.  I made a corn chowder in the a.m. in the slow cooker I had received from my mom and dad for my birthday, then made bread bowls and buns.  We had four people over for supper last night.  Larry did a lot of the chopping and cutting for the corn chowder and the bread was easy work.  Everything was fine and we enjoyed our company till 9:30.  We sat down to relax and watch TV after they left and I suddenly felt my heart pounding.  Larry took my pulse and estimated it was at 90, a little high, then again ten minutes later and he couldn't tell the break between beats, off to the hospital.  This is the first time I have ever had this kind of attack and NOT had shortness of breath with it.  It was so weird.  My heart was pounding, but otherwise I felt like we were just out for an evening drive.  By the time I went into the hospital, I did have SOB though.  They found my pulse was racing between the high one hundred and forties up to 160.  After getting my history (it was Dr. Crowe, the one who had seen Larry before) and monitoring me for awhile, they decided I needed to stay overnight for observation.  I had oxygen from the moment I arrived and by midnight was settling into a room.  My chest was still tight but my pulse was going back to normal.  They gave me cardizam (spelling?)In the am they found my pulse going the other way, in the 50's, but shortly after I shot up to 150 again.  They continued to watch me and by 4:30 p.m., they found my pulse had been normal long enough that they sent me home with a prescription for coumadin and diltiazem.  I also found out that it was a beta blocker that lowered my heart so badly a couple of months ago, so no beta blockers for me.  I need to go back to outpatients on Monday am for my INR and see Dr. Crowe.  He has been in touch with Dr. Strelke (internalist) and is going by her recomendations.  My blood thinner dose is the highest I have ever had it,10mg to start then 5mg a day, I think they might lower it on Monday, because I was usually 2-3 at most before or it was too much.  But I never got to see the doctor, he just did it by phone.  I couldn't even ask for my records, but I will on Monday when I see him.  I hope the weekend is quieter (smile)

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INR Monday

Went to the outpatients this a.m. to get my INR checked since I am now back on coumadin (warfarin actually).  It was 1.6. I talked to Dr. Crowe about getting on with the new doctor that is coming in January.  He said he was sure he would take me on and that he would be willing to take me himself until January.  They will be in the same clinic so it won't be a problem.  Yeah!  My a-fib actually did me a favor.  I see Dr. Strelke on Wednesday, and I phoned Dr. Wong (pulmonoligist) to let him know the most recent developments.  He is on days off until next Monday, but his receptionist is very good in passing on information and he is good at following up.  All in all, I feel much better about the fact that this IS going to be dealt with in the near future.     Side note:  It is now 6:10 p.m., even though Dr. Wong was on days off, he got my message  about what has been happening, as well as the results of my sinus xrays and PHONED me to talk to me about the fact I have a sinus infection that he wanted to treat before he did the sleep test or lung scan.  He phoned the local pharmacy and prescribed a strong antibiotic, plus a nasal spray which the drugist told me is the strongest one on the market.  I am so happy that I have a doctor(s) that are so good at their care.  Dr. Strelke, Dr. Crowe and Dr. Wong are working together to give me the best care possible I think.  That gives me hope that I have not had for months.  Thankyou Lord!                   

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Puffy

I'm beginning to feel rather big (fluffy), which is not usual for me.  I stand about 6 ft tall, so I've never been light.  But I've always been within the recomended weight range for my size.  However, when I saw Dr. Wong in November I was 17 pounds more than usual and only 9 days later I was 9 lbs. more!  That's a lb. a day!  A little bit much isn't it?  I see Dr. Strelke and I hope I get to be weighed to see if this is continuing.  I can't imagine what I will be like if this continues!  Yesterday was a high of -31 C "The weather outside is frightful, but inside it's just delightful" I stayed indoors and kept my little heater going.  Today they expect it to get up to -24C with a warming trend throughout the week.  Since my hospital stint I feel tired and unmotivated to do anything.  I dropped my guitar lessons for this month and told him I would contact him in January to let him know how I'm feeling.  Between my health, specialist appointments, and Christmas I just felt I better drop something.  I'm even having to force myself to practice, but I know I need to make myself, I enjoy it when I do!  Happy holiday preparations to everyone!

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I just had to write a second time today!

That's a very long Subject line I know, but I went to see Dr. Strelke today and I couldn't wait until tommorrow to share it.  She was reviewing my case and stated she doesn't know that much about PH, she is ordering my lung scan and sleep test and forwarding the results to Dr. Wong.  She is also referring me to the top PH cardiologist at the PH clinic in the University hospital.  She said Dr. Wong and Dr. Michelakis could work in consultation with each other.  Apparently Dr. Wong has told her he belives my PH is secondary, caused by a "leaky" heart valve.  I've had a heart murmur all my life, but it is now becoming more of a problem.  If that is the case, wouldn't it be normal to assume that with surgery, that could be fixed and everything go back to normal?  Wouldn't that be loverly!  Dr. Strelke said that they would probably have to do a right heart catheter to know for sure, but just the idea is very hopeful to me!  When I got home I phoned my husband (he was on location at work) and told him the news.  I could be going to Edmonton again before Christmas to see Dr. Michelakis, but I don't mind.  The thought of getting treatment that will help me is a real moral booster.  Dr. Strelke didn't say anything about the possible surgery or any kind of cure for that matter and I didn't think to ask until later, but she did say that it was better news than primary.  Wahoo! Oh yeah, she also put me back on Amiodarone and a diuretic.

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A wintery day

Well, the snow is falling, Christmas music is playing and I'm putting together a gingerbread house with my grandchildren T and A.  We just finished "building" the house, now we have to wait for the "glue" to dry, then we can put on the "siding".  Their mom has to much trouble with morning sickness to do anything with them right now, she should be over it soon (I hope).  Anyway, I am enjoying the time with them and we are at a very slow pace right now.  I got a call today and I will be doing my sleep test next Wednesday night.  I should be hearing from Dr. Michalakis's office by then.  I had my lung scan yesterday.  I thought it was rather strange that there is no problem putting radioactive oxygen into your lungs and then absolutely forbid you to touch your mouth and wrap the instruments up carefully, securing them with an elastic after so there is no contamination or contact.  It's okay inside but not outside?  I was instructed that if I had to cough to raise my hand first so that I wouldn't contaminate the air with my cough and put radioactivity into the room.  I breathed it in for five minutes, was xrayed, then injected with a radioactive dye and xrayed again, all told I was in the hospital for about an hour.  All in a days work I guess.I wish I had some way of telling whether the diuretic is working or not, oh well,  Happy Holidays everyone!

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Wasn't that a party

I thought that would get everyones attention!  Actually, it felt like it must have been one of "those" parties or so I've always been told that it is what you feel like after the night before!  Confused yet?  I'll explain dear diary, on Saturday I tried to do a little shopping, first stop was a craft store. Spent about twenty minutes getting the items on my list, not sharing what they were because I have family reading this, HA!  Anyway, went to my daughters and was there for maybe 40 minutes when I went into a-fib again.  Back to emerg, I'm actually getting to know the team there, OUCH.  The doctor on call consulted a specialist and upped my Amiodarone as well as started me back on Cardizam.  Next a.m I took the double dose (now 400) and went off to church.  After church I wasn't feeling well and by evening had a raging migraine that just wouldn't quit.  After trying to lay down, and scared to take anything without the doctors okay, I went back to emerg (hubby made it home and took me in).  They gave me a prescription for codiene and told me to take it with regular tyelonol.  He said it was like tylenol 3 without the caffiene.  When I woke up this a.m. I felt much better, which means I still don't feel well but I don't have that terrible headache.  I'm still taking Amiodarone but 200 twice a day instead of 400 at once.  I'm developing a headache again though (and the nausea that goes with it).  I've taken my tylenol fix so maybe it won't amount to much.  I can always hope, right?  Simone came today and did house.  She did more than usual because I've done way less than usual. Oh well, I look forward to feeling better!  I pick up my machine for the sleep test tomorrow and I got my results back from the lung scan, everything is clear, no pulmonary embolus present.  One more test down and who knows how many more to go.  Have a good evening everyone!

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The purpose of Christmas?

I realized today what the most important part of Christmas is.  Oh, it's something I know and have known most of my life, but it's one thing to know and it's another to KNOW, you know?  Maybe this will explain it better!

Though illness wracks my body, while headaches add their pain,

Lord, give me a heart for service, as I call upon your name

For their are others out there, far worse off than me,

They have no one to comfort, nor do their purpose see.

Let me celebrate the life I have, though imperfections I may see

Perfection is what I have in you, oh may it ever be.

And through this mind and body, please shine your light through me,

Give me a heart of service, so grateful I will be.

There is always something, there's always things to do,

An encouraging word, a silent prayer,from the depths of me to you.

May I lift the needs of others, and at your altar lay,

That they might come to know your Son,Understanding what you say.

And now I have a Christmas prayer, for all my friends online,

May the babe in the manger be your Lord and Saviour,

As He is, was, will be mine.

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Mysteries

Yesterday was a good day healthwise and I managed to bake homemade bread and buns.  I finished in time to go to our churches Christmas Banquet.  This year they did something far from the ordinary, a mystery supper.  The mystery was not the menu, but rather we had a murder mystery to solve.  There were about one hundred people there, so they were a little concerned how it would work, but it went off very well.  The "victim" was Santa Claus and everyone was given a small tidbit of a clue that they had to share with others as they mingled.  Since Larry was working, I went with a neighbor (female, I assure you) and we had a great time.  Afterwards the Pastor spoke of the "mystery" that was unravelled with clues throughout the years leading up to the birth of Christ.  The prophecies did not always explain the who and how of God's plan of Salvation.  Now we have it spelt out for us, J-E-S-U-S :).  All in all it was a great evening, oh by the way, Judy and I both guessed right along with about 15 others!  Today I was doing good until about 2:30, now I have a headache that is getting worse and I'm beginning to get a little dizzy, I will sign off and go lay down,  Your "canadian goose"  as a certain onliner has it put.  One question, what is this Canadian goose doing in Canada at this time of year?  Everyone knows they "fly" south for the winter!  Any ideas? 

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