Clinic visit
Well this visit wasn't quite what we expected. We decided on a leisurely drive in and a lovely lunch en route as I get so exhausted after these visits and we did not want the bother of having to think of cooking a meal after it. The Plough is not too far away from my hospital so in we went and enjoyed a lovely lunch and onwards to Sheffield for my appointment.
On arriving it was so lovely to meet up with Parris, the lovely girl I spoke of in a previous blog who had been so desperately poorly in I.C.U. just a few weeks before. She was looking really good and said that she was loving her hickman line (note for some of those heading down this route) as she felt so much better since being on the iloprost. Unfortunately as I needed all the necessary tests done before my specialist visit our time together was short but non the less I did get to meet her in person. I love doing this as it brings all the folk we talk to on our forums alive. Have since heard that it was almost 11.00 p.m. before Parris arrived home as she had to wait 6 hours for transport!
After tests I went in to meet up with Charlie. We laughed as I told him I was so pleased it was not David since I had wrongly sent him a message meant for another friend inviting him out to lunch on Valentines day! He agreed with us that my ph is steadily getting worse as my walk test showed and ecg. Where did we go from here. I truly expected to be told I was going onto the trial drug of tocilizumab. This is still the case but we at Sheffield do not have the go ahead yet. Some hospitals in the UK are already able to receive it but we were not quite there. Selaxipag is still not available in the UK yet and we don't know when we will get it so there it was............ nothing, zilch....... He told me that he too did not think I was yet bad enough for the hickman line and we agreed. Charlie said he did not want me to go away and be worried and stressed about heading for the line but I told him I was absolutely not anyway. After being on it for a year when initially diagnosed I know all the ups and downs of this line and medicine and he agreed with me, I know rather a lot about ph now so the stress has gone from me.
Charlie is always so lovely and soothing to talk to and he always makes me feel everything will be OK. When I left it was agreed that I would not change anything as he believes as did the other doctors that macitenten was not the way for me as it belongs to the same family of drugs as ambrisenten which I was already on. but that I would be back in clinic in three months to talk again about the tocilizumab. He/we hoped it would be available for me then to trial. We arrived home earlier than expected but as always we are always so weary after these visits so I did nothing, just sat in a chair to try to get some strength back.
Home for only five minutes and the phone rang. This time it was Robin, another one of my ph specialists. I joked with him that I hoped he was not ringing to complain about my flap jacks, I knew he had immediately gone into the kitchen to grab one when I arrived! He said no, they were lovely but he had rung to see if I wanted to be part of the study of infused iron for patients with ph. Now I can't take oral iron, always need be infused so I was all ears. My iron levels are low, but I am NOT yet anaemic. Lots of patients with ph are low in iron and studies show that if we can raise our iron levels we help our breathing and concentration etc. The study takes place over 6 months and involved a bike! (me and bikes do not go together well) however it is stationary bike and I will be infused with either iron or placebo. Not sure of the rest yet as I agreed so paperwork in the post.
Robin then went on to tell me that we in Sheffield are getting the trial drug in April but as I would be on this study I would need to wait till it ends and then I was promised to begin the trial afterwards. Colin and I agreed. If I got the iron infusions and it helped with breathing and further worsening of ph it was worth a go. Robin said it was not an exciting study but I had read before about the advantages of iron infusions in patients with ph so was happy to do something rather than sit and let it get worse. So there you have it, not quite what we expected from this visit but interesting.
Sexual awareness
As Izzy was running around our house after her bath naked I told her to put some nicks on as I knew we were expecting a visitor. She quickly complied and on doing so said "its alright to have no clothes on with you cos you are my family but I can't with anybody else" Quite where she had heard this I don't know but as is usual I opened up my Facebook to read that it is a month of sexual awareness in America, maybe it is here in UK too, I don't know. One of my Facebook friends had a vey traumatic time as a child being sexually abused by not one but two of her family since a very early age. This led to her not trusting members of the opposite sex and I quite understand this. Eventually after many years she met a super guy and he taught her not to be afraid, he taught her to love and trust again. When at last this girl had her life in order she tragically lost this guy to ph. She had found happiness only to have it snatched away. This was so sad. Here is just one of the posts shared with my friend about another girls personal abuse ......The first three lines are written by my friend and shows a post sent to her from another abused girl.
Post From Her Blog
I'm not sure you realize how this will affect me. How you've chained me for life. How difficult it will be for me to go through life with a broken heart. I never knew people could be so evil. I will eventually learn to grow a shield that protects my heart. That will block out people who love me and it will show the worst of me hoping to scare off everyone, so they can leave me. Let me be me in my loneliness. Did you realize you were hurting me forever?
Do you know how it hurts to be broken? Do you know how it was for her? How miserable you made her feel? How she bled herself to death? How she was dead alive. You stripped her love, her innocence. You ruined her forever. I was there. I heard you. I didn't understand it back then but I can only imagine how you ripped her alive. She didn't have anyone. No one listened. No one knew but you. Anonymous
My friend has gone on to teach sexual awareness in schools and clubs. This was just one of the very many posts she has received on sexual abuse, shocking isn't it and so sad. My friend is amazing, She has not let her own abuse stop her from helping others. She goes out there and tells children what sexual abuse is. She teaches that it is not just a stranger, it can be somebody very close in the home. I was shocked when she shared her story with me and she went on to send me some of the posts she receives from her friends or strangers., hence the one above sent to her. One of them I believe says it all and I wanted to share it with you as it is the month for sexual awareness. This girl is amazing in all her teachings and the fact that somebody chose to share with her quite how they felt about their life after abuse is heart wrenching, have your tissues ready but yes, it needs to be heard. We need to tell everyone that IF they are or have been abused in such a way it is not them that is dirty, or bad, it is the perpetrator doing such things. If we bring it out into the open many more children can be saved from continued abuse.
Right, end of this blog now as our Izzy is expected. We are having her over night and taking her to see her other grandparents. No resting for us here then!
Go well everyone and thank you for reading this
Carole xxx
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