This weeks post is very pulmonary hypertension related and it is terribly sad. It began with the anniversary of the death of our very lovely Laura Parker. It barely seems two minutes since I went for my hospital visit and was looking forward to a catch up with Laura as I generally did. Sadly this time I had missed her by a day as she had been told there was nothing more that could be done for her, We lost her a few short weeks later as she left this life surrounded by all her loved ones, so terribly sad and she left behind a husband and young son.
I have no idea how they have been coping but I do know Laura made sure there were cards for birthdays, Christmas, anniversaries etc left behind for them. Laura was and still is missed terribly not just by her own family and friends but by the ph community who loved her. I know the staff of M2 where she had the best of care loved her too and will have felt her loss so much. Awful that we lost her, ph is a very cruel disease.
Stacie Pridden
Most of you will know Stacie, a bubbly young lady who has been fighting ph for so many years. Stacie had a transplant a year ago that appeared to be a huge success. We were all astounded as to how quickly she recovered and she was soon home and making up for lost time, We saw her on television and in newspapers telling her story and attending Wimbledon ( her dream event which she finally managed to attend) and her holidays away with her guy.
Sadly we heard the news that her lungs are not doing well at all. The doctors tried so many things to help them but the news now is that they won't recover and that the hoped for second transplant can never take place. It isn't just a set back, a wait till you are in a better place kind of news, it is a no way for another transplant now, you would not come out of the theatre alive. To say we are all reeling at this news just would not cover it, I am gutted about this BUT I also know Stacie.
Stacie is above all else a fighter. When others might be down and out Stacie jumps up ready for the fight to continue and I know this is what she will be doing now. She will be looking to do everything she wants to do and she will cram into her life so much, all the while grabbing as much enjoyment as she possibly can do and making lovely memories for those that know and love her. There is still a life to live for Stacie and I am sure you will all be wishing her well and rooting for her to make each second count. Stacie will continue to kick the ass of ph for a long while to come.
It's not always ph
This occurred quite a while ago as I had my Hickman line in, I remember this as if it was yesterday. It was Christmas 2010 and I had not been feeling too good at all. Still all the family were due round for lunch and then a couple of days later we were going to meet up with friends and also one of my ph nurses down in the Village of Hope ( lovely word hope isn't it! ). Anyway the days leading up to Christmas were not good at all. As Colin cleaned my line and filled my pump I remember sitting on a chair and silently crying, He asked why and I said it was so painful. He was shocked as he was as gentle as he could possibly be but I know pain and I knew how bad it was, A friend called to see us and noticed I was walking all hunched over, The reason for this was my heart did not hurt as much in this position. I was sure my heart was giving up the battle but I was also sure I would have my last Christmas surrounded by my family.
I managed it albeit in so much pain and had my first Christmas with my new granddaughter Izzy. I didn't know it then but times were changing so much for my daughter and she was carrying her own burdens but neither of us spoke of them, we didn't want to spoil the day. Still memories were made of what I was sure would be my last time with all my family feeling joyful.
Two days later I cancelled my trip to Hope and we instead went to our A & E as I was so sure I was having a heart attack. They could not help me so spoke to my A Team at Sheffield who said they were to get me there asap. I remember throwing up in the ambulance as I had been given morphine at my hospital for the pain. I do not do well with opiates at all and was now dealing with the consequences. The ambulance team were so lovely and assured me that I was not having a heart attack as I was wired up to the ecg machine and it would have shown up on it. I was bewildered, as indeed was Colin. What was happening to cause such an incredible degree of pain that wasn't related to my heart. My line came out just above my heart so I was convinced it was heart related.
I know the lovely staff were shocked by my appearance, grey, shaking, throwing up and in so much pain. Once again all the wheels were set in motion and tests carried out. I remember Charlie, my doctor telling me he didn't know what was going on but it was not a heart attack too. Though I felt relief I was still in incredible pain. I told Charlie about my hunching over as it was the best was to ease some of the pain. He had a light bulb moment and cane to check my chest. He pressed on the area over my heart and I screamed. this shocked Charlie and Colin. Colin said he had no idea just how much pain I had been in, that even to get washed must have been agony, it was, Then Charlie pushed again and again I screamed out it was unbearable. We were then told that I had a condition called muscular skeletosis. There are many reasons why this occur's and some do not have it too bad but the muscles, tendons etc all around my chest wall were so badly inflamed that even the slightest movement caused pain.
Over time with pain killers this went, it sometimes comes back a little to give me a gentle hint of how bad it can get. For me I was so relieved not to be having a heart attack. I think sometimes we put every little thing that is wrong with us down to ph, easily done as it does affect our bodies so much and the meds are so powerful they cause problems but we do need to remember not everything has its cause in ph.
Mary, Mary, leave your tights alone!
Our local school where Izzy attends is a church school and we were invited to attend the Easter Show. Izzy was Mary and though she was on the stage for quite a long time she did not have much to say or do. However there was a lot of time standing central stage. In her outfit depicting the clothes of the time she looked so cute but......... her tights must have felt uncomfortable and she kept on pulling them up on top of her clothes. We tried to catch her eye to tell her not to do this to no avail. We now have a lovely video of her spoiled by this continues action. In time we will smile, she will too as she grows older but right now I am just wishing she had taken the darned tights off before going onto the stage. The play itself was beautifully performed and the singing was outstanding. This is a lovely school and we are so pleased she managed to get a place here.
New Admins for PAH Group
Once again we felt the need to ask for help with the admin side of the group. We were quite overwhelmed with responses which was amazing. We now have two new ones, Lyz Clements here in the UK and Nicole Burish who lives in the USA. I am sure you will find them both helpful if you need to talk, As I said before both myself and Paul are still here, we just needed a little help and we asked and we received it.
Right, just waiting permission from Stacie and I will post this blog.
Oh on the denervation news. I am so thrilled to be able to tell you that though no MRI results back yet I certainly continue to feel so much better, I hope things continue to improve. My next MRI is in two months time.
Go well everyone, thank you for the likes and the shares. I love comments too!..
Warm love to you all.
Carole xxx
No comments:
Post a Comment