Progress on PH friends
Candice Mills Fortner, one of our ph family living in America has recently posted on Facebook that all her tests are the best she has done with ph since having her Remodilin Sub-q. Her doctors are so pleased too at this brilliant improvement in her condition, Candice is so excited at this news and said that despite all the side effects of the drugs she needs to take life is sooo much better and the up side is worth any down sides the drugs cause her.. I do hope her experience and excitement of getting more of a life back helps the ones who are headed in this direction with their ph medicines, How I love to read posts like this. We do need to share the ups and as well as the downs of this disease.
Parris was in total despair when she was first diagnosed and despaired of ever sleeping in her own bed as stairs were just too much for her. Now at last, after nine long months of ph medicine she has just posted that she is sleeping in her own bed. The joy and excitement we saw in her post is so lovely to see and what a great inspirational piece for the ones struggling at the beginning of their journey or a change in medicines. Well done Parris, we always said things would improve in time and they have done. I am so very very pleased for you, as I am sure are the rest of your ph family xx
Steph Ingram has had her line removed and is now at home with her oral medication. ,The Hickman line did its job,and helped her heart to rest. Great news Steph, maybe we will one day meet up at our hospital, our paths must cross soon as I will be attending often for the next few months. Will be lovely to meet in person.
Anna Caroline Bowen has had her line put in and is now beginning the lessons into how to manage her drugs and her pump. She has been getting worse with her ph but hopefully now she has the line she too will begin to feel better and have her life back. Thinking of you Anna.
Health care at home
Now I must confess to having had very little trouble with this company up to now. O.K maybe at the start when they sent the wrong syringes but this they rectified as they sent a courier and at 6.30 in the morning there were my correct ones for me. I know lots of you had trouble so I felt pleased it never seemed to happen to me, Now though I am annoyed as they have changed their time slots for delivery to ALL DAY. For heavens sake we have compromised lives already we don't want to have to sit in all day to receive the drugs we take daily, I often have blood tests on the same day so I arrange them for the afternoon and ask for morning delivery for my meds. Plus I have just began my pottery class on Monday afternoons. All needs to be changed now, They are getting like gas and electric and delivery companies with their all day slots. Not good enough Health care at Home, give us back our morning or afternoon slots.
I rang them this morning to ask what time my delivery was. I was told to do this as once things were on the van they would have an idea. Well mine was for the afternoon slot at 2.30. Totally out of the question, My pottery class is in the afternoon and I am not prepared to give it up. Colin is away in the van or we could have done it between us, I was asked if I wanted a Saturday all day slot, NO, I don't want an all day slot at all, let alone a Saturday one which would mean there would be no more weekends away when my delivery was due. End result was we agreed to a Thursday evening slot, If we are going away we shall ring and change it again but I am usually in bed early in the evening and Colin will be able to sign for the meds, So what happened. Nobody thought to ring the delivery driver and tell him the change of plan. He was outside our door when he rang Colin and asked where we were as he kept ringing the bell with no response. Fortunately I had told Colin of the change of plan and he was able to tell the driver, Pity about the lack of communication between driver and the office. Precious time was wasted, Anyway let's see how we get on with our evening slot.
Pottery
Still going well and loving and learning all the time, I have decided I want to do a bowl, two sided in its construction in that it shall have the ph ribbon in the middle of the top and underside of the bowl and then the stripes to represent the zebra. Then I shall paint the ribbon periwinkle and the stripes white and black. The periwinkle shall have to be tested on tiles and fired so I can get the correct colour as often the colours change completely when being fired. Not sure how it will turn out but oh the fun of trying. So committed am I to this class I even bought my own apron! I wasn't going to bother if I was only going to do six sessions but I know I shall join up for the next and the next all being well. I haven't even finished my first effort yet as it takes so long to dry and then fired and glazed etc so it is all ongoing. To date I have three pieces, all in different stages, going on!
Today I finished my piece with the ribbon for the symbol of ph. Now just waiting for it to dry., I am so pleased with this piece and am hoping it doesn't blow up in the kiln. Everyone thought it looked really good so I am so looking forward to glazing it and then at last I will be able to post pictures of my efforts. Now I need to make the stand for it to sit on.
Home alone
Colin has gone off in the motor home again, I didn't want to go as the weather is not going to be the best. Colin walks and bikes in all weathers but it isn't good to be out in really bad weather when you have ph. It compromises our lungs too much so I am staying home. He never leaves if I am going through a bad patch and he never goes more than a two hour journey away so he can get home pretty swiftly should the need arise.
Once Colin had gone I went out for a while to get out of the cleaners way. It is always so nice to come home to the smell of discinfectant and polish and a gleaming house, I barely had stepped in through the door when my neighbour asked me if I would take him shopping, Now I have spoken of this guy before, Roy, I love him and worry about him so take him up first thing in the morning a glass of complan made with jersey milk to try to get his weight back up. Of course I said yes to this but nothing is ever straight forward with Roy, He then said he will be ready at 1.30 and I need to take his cleaner home too! Anyway off we went and I did as I was told and dropped his cleaner off and then carried on to Tesco where he did a big shop. Then he said we needed to go to Asda, when I asked why I was told the salmon was cheaper there. Off we went where he bought a side of salmon and had it cut into individual pieces and packed in individual bags and sealed, it took ages! By this time I was going "off" as I always do in the afternoons so I was ready for home but it wasn't to be. He wanted to look at the lounging about suits, or floppies as I call them, trousers and tops but not pyjamas but made for wearing in the house. He couldn't see what he wanted so decided a coffee was next on the agenda. He then told me he would look at Sainsburys today for one so that is my today's task! On arriving home I ate a bowl of cold pasta as I couldn't be bothered to do more and went to bed. I slept from six until 4.10 in the morning. A complete eight hours sleep, almost unheard of but it did me good.
Oh so tired, and feeling oh so rough.
Well I didn't get to take Roy for his floppies. By twelve o clock, much too early for Roy as he doesn't get up until 1.00, I just knew I was going "off". My head was banging so bad and I could hear the whoosh whoosh of the blood through my ears. Pain in my right side too is bad and I just can't be bothered to get any food. I do wonder if it is a side effect of the trial medication as I remembered two hours after this started today that they were some of the side effects of the drugs. I have been on the drug for ten days now so maybe it will be. If so I assume I will, over time, get used to it. For now though I am in bed with no plans to leave it soon. Hoping tomorrow I feel somewhat better. Would hate to feel like this for the length of the trial. Signing off for now, no strength to be writing even.
Awoke to a better day so far BUT not tried to get up yet, hope I am not as wobbly as I was yesterday. So far the headache has gone too, or almost though there is still a little of it, a reminder to get in touch with my doctor and ask for the pain meds and anti sickness tablets that were prescribed for me when I began the iloprost as the headaches are reminiscent of the ones I had when I began my medications through the Hickman line. They were horrific so do not wish for those back again thank you. As I was in bed I began catching up with a little of writing to people who are wishing to join our ph group. I have discovered some people just want to join many many groups so they can gain more and more friends!. Of course we don't allow them as our ph website is for people suffering with ph or their carers, though we do allow friends of ph sufferers too.
I shall get out of bed now and make Roy his complan, hope I do manage to take him out to Sainsbury's today too, How exciting my life is.....NOT.
Controversial
Driving my car on a MAIN busy road I was shocked to see a man riding his bike on the road whilst his dog was running on a long lead beside him. The dog ran in front of his bike so the guy veered into the middle of the road. This caused me to swerve around him as I could so easily have killed both him and his dog. On swerving there was a car heading for me and we narrowly missed each other. I know some people prefer dogs to people, as has been pointed out to me when I posted on face book BUT even if that is the case why would any sane person risk their own lives, the life of the dog and lives of innocent people. Even if you prefer dogs most people have family and I wonder how the ones that agree this guy was in the right would feel if their son, daughter, grandchild, mom or dad etc was killed in such a way. Surely somebody that loves their dog so much would not even risk the life of their animal in such a way. A busy main road is not the place to exercise a dog, find a park or a country road or walk them on a pavement. I may well lose friends over this post but I am sorry, no matter how much you love your dogs a busy main road should not be for the use of exercising your pets. A responsible pet owner takes care always to protect their pets. . Surely it is totally irresponsible by putting the dogs life at risk, even if you don't think the lives of others are as important as walking your dog. Were we car owners to take our cars into parks and put dogs at risk there would be an outcry as we would be in danger of harming the dogs that exercise there . To me dogs can never take the place of my family BUT I would never do anything so irresponsible that could harm a dog such as this guy did. I would hate you to think I don't like dogs, I do very much and totally understand that a dog is a member of the family, of course they are BUT would you put your three year old at risk, or your elderly mother, or son or daughter if you had been in my position. Which way would you you have swerved. Would you think the life of the dog was more precious than somebody else's family and swerve across the road into the path of the oncoming traffic risking your life, the life of your passengers and the lives of the people in the car headed in your direction. I swerved into the oncoming traffic without thinking. I won't do it again. Awful though it sounds if there is a next time I won't swerve into the traffic, I would swerve the other way towards the guy on the bike and his dog. How then should we move forward. Keep all cars off the road so as to give it all over for irresponsible dog owners. I am sure most of you take good care of your dogs, can you HONESTLY say that this guy was in the right? Would love some replies to this one.
Across the miles
I have a cousin, many times removed who lives in New Zealand. He helped me so much in my research for my Porter family tree, giving me many stories that brought the family alive. Without computers, Facebook etc we would never have "virtually" met but I can take peeks into his family as he does into ours. I shared with him the joys on the birth of his granddaughters and now can see his son getting engaged and planning his wedding. I have "seen" them move into their new home and so much more. Even a computer idiot like me can share their news. As I write my blogs it is so lovely to see that they can, across the miles, also share in our news. I know people mourn the death of letter writing etc but without the computer I would never have known this side of my life and even though we have not met I feel a real bond with them. It's strange isn't it how family does have this bond. Is it blood calling to blood, who knows but I cherish my New Zealand family and if their country is ever mentioned when I am with friends I always say I have family living there, even though we only met over our mutual research on family history. Heads up Keith! Well done for flying and WHEN we beat this disease we shall tour your country and visit you and Lorraine and get to meet your gorgeous little grandchildren xx
................ And so to bed!!
What a day. I haven't had such a busy day in a long time and yet I kept up with all I needed to do. Maybe the meds are kicking in or maybe I was just so fortunate my ph didn't rear it's ugly head as much as it could have done, I achieved all I set out to do and all on my own! Whilst on my travels part of my task was to deliver an iced Christmas cake to my ex boss, I make one every year. The house was in chaos as they were preparing for all their family and extended family to arrive for Christmas. This was something i did when I worked for them. I did wish I had the energy to help out and who knows, maybe I will next year if this trial helps.
Collected Phoebe, our granddaughter from school for the first time ever and brought her to ours for tea and then drove her to her meeting at the Sea Scouts. I was gutted when returning home I found she had left her lip gloss behind, Doesn't sound much does it but she had been so excited to show me this as the container it was in was a pretty special and she took it with her everywhere. We don't see Phoebe that often as they lead very busy lives and live too far away for us to get involved generally with the running around between schools and classes etc. I am not sure when we will manage to get it back to her but I hope she isn't too upset to be without this.
After my incredibly busy day I was so relieved to fall into bed. I then caught up with the admin side of the pulmonary arterial hypertension group. I began "talking" to a lovely lady whose boyfriend has been told he has ph but is in denial, He won't allow her to go to his appointments and she so wants to help him and to understand the disease. She doesn't even know which type of ph he has or which stage it is at, We would all like to bury our head in the sands with this disease but we can't do this, I know I am so thankful for the support I receive from my husband with this ph and I this guy would involve his lovely caring girl friend, She is so troubled and is not getting answers, I can't give her the answers she wants, she needs to be in his meetings and also persuade him to join our group. He doesn't want to as he doesn't want to think about having it, I know she reads my blogs so this is for her. Stress how important it is for him to ask the right questions. (I did tell her which ones he needs to ask) tell him also he needs to say he wants to be referred to a specialist ph doctor, a general practitioner will not have the knowledge a specialist in this disease has. Indeed without the right heart cath he can't even know for certain he has ph. He has other problems and he has too many to be addressed by a G P. I have told her she can message me any time and I will try to help but I know if he can take his head out of the sand and accept what he has and get all the correct care his life could be so much better. I do hope he heeds this advice and that he does well once he is on the ph meds.
After I played catch up with this it was time to sleep, aahhhhhh bliss.
My first baby shower.
A few days ago I was invited to attend my first baby shower, I had actually been invited to another friends a month before but had to say no as we were away. This shower was for Jessica, a very very special part of my family, Her mom had arranged it all without telling her and she did such a great job of it too. On arriving at the house the table looked lovely with much food and there were tiny little blue plastic table decorations scattered around all the plates, nappy pins and blue pegs and the tiniest dummies that looked so cute, There was a cake decorated with blue foot prints all around and a baby on the top. Little bags of heart shaped dragoons in blue were tied with a picture of a baby on it and the message Thank you for coming to Jessica's baby shower and the date. So much work had gone into hosting this shower for her daughter.
When Jessica was due to arrive the lights went out and we stayed silent until she entered the room when the lights were all turned on. Jess was shocked and didn't know what to say at first as she looked around the room to see just who was attending, As she stared around her she was silent and then her eyes caught mine. She immediately came over to me, bent down to give me a hug and a kiss and burst into tears. How pleased and fortunate was I to have had the privilege to have attended this so special occasion. Memories were made and Jessica's mom gave me things to take home for my memory box, this was so thoughtful of her, Now the baby, a little boy, is eight weeks off his expected delivery date and I can't wait to meet the latest member of my family. Jess received many many presents, beautiful ones and both she and her boyfriend have at least a great start in the clothing department for baby boys. Let's hope the scans are correct or there will be a baby girl decked out in clothes with cars and boys things all over her!
Well Colin arrives home this afternoon. I must get out of bed and begin my day, The weather is a bit windy here, hope it's not too bad where you all live. I shall finish the soup I am making and deliver it to my friend to be frozen and taken out over the festive season when she has many meals to cook. Then once Colin arrives home and has unpacked I shall follow him to our van storage place where he will make sure all is well with our motor home and then I shall give him a lift home. Should then be time to collect Izzy from school, make her tea and have a bit of a natter to her, listen to her song she is rehearsing for Christmas and then let grandad take her swimming.
So ends another blog, Keep well everyone and keep smiling!
Love to you all xxxxx
An add on...... Oh my word the pain gets sooo bad in my head. It is weird as I take my trial meds at around two and am fine, well as I said before always the reminder of a headache brewing. What happens then is about two hours of just being aware of my head and then WHAM, the headache from hell is back, so bad I can barely think, let alone move. After a couple of hours there then begins the pain in my right flank, we were told I may get this with the medicines, Early evening I went to bed and tried to watch some tv to no avail., Colin kept coming in to check me and said he felt terrible as there was nothing he could do, All I can do is take paracetamol but that is just like having somebody kiss your big toe if you have stubbed it really bad, the pain is still there. It has been logged by my research nurse as she rings to check how I am doing. Everything out of the ordinary for a ph patient must be reported and then it is carefully recorded for the research laboratory. Now without a doubt I do believe I am NOT on the placebo but the drug. I don't know which strength so if and when it works with patients they will adjust accordingly I guess.,
The morning after the night before.
So here we go, another morning where I don't feel too bad, just a little reminder in my head of the headache so I shall get some jobs done whilst I am doing ok, I feel sure my body will eventually get used to the meds and the headaches will stop, just takes time.
Izzy came home from school yesterday with another head teachers award. When I asked why she had received this she told me for good "sitting"! I said what, just because you can sit nicely you get a reward? She explained that no, it meant she had sat quietly and did not fidget when they were asked to do so and listen to the teacher. She said the teacher told her she was a good girl. I must confess we certainly never have any trouble from her, she is kind and helpful, particularly when I am going through my ph moments where she is always happy to fetch and carry for me. She is my shining star through all of this and I count my blessings that I can see her progress through her life,
Today I shall bake an apple pie, take Roy his Complan and maybe go to the supermarket to collect another box for giving to the rotary, Every year at this time they supply boxes for anyone who feels inclined to fill them and then they are distributed to the less fortunate. I filled one last week for a female. You ring around the category so as to make it easier for them when they begin to open them and make up bigger boxes for the needy. I put things in like shampoo, conditioner, body moisturiser deodorant and sanitary pads. Today I shall do one for household which will contain tins of food and some chocolate. Next week will be for a child. I have never do one for a man and I don't quite know why, maybe I shall do this year. Then nothing of excitement going on today, Colin goes to his sketching class and I might even get to read a little of my book.
All for now, go well xxx
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