Here I am back in the same ward I began my ph journey ten years ago. My bed is in the same corner as it was then. The difference is that COVID has changed so much of how things work here.
I was admitted to hospital on Friday 24th July after battling for quite a while with shortage of breath, low oxygen, palpitations and the fattest legs ever - so fat I could barely get in and out of bed due to fluid build up. No amount if upping my water tablets helped with my fat legs. The selexipag that we had thought would help so much seems to have dropped my blood pressure so low that it was dangerous. This meant that trying to move was not good as I felt dizzy and kept almost falling over, never a good thing.
I spent more and more time in bed, something I hate and my consultants rang daily for updates. I even said to Colin that I didn’t know if I could fight anymore as I was not sure I would ever feel any better. A life feeling as I did just would not be a life worth living so terrible had I felt. Fortunately at last I heard from my consultant the words I wanted to hear, “ we will admit you tomorrow, I was so relieved as by that time I felt life was unbearable.
Bags packed on the Thursday it was also a day to say goodbye to our darling Izzy after she had stayed with us for 124 days! Granddad had dutifully been her teacher, plaything, carer and best friend. Our house would no more be strewn with dolls, brushes, clothes etc. We could get back to normality as they were heading off for Spain! It was so sad to see her go but she needed to be back where she belonged. Our son arrived from Leeds to live in their house and take care of animals etc. Life would be changing.
Izzy was in two minds about how she felt. Clearly she wanted cuddles etc from her family next door but she had been having so much attention 24/7 and as she is a granddads girl she knew she would miss him so much. Her emotions were all over the place, pleased to think she could go home and dreading not being able to come back but there was another pull for her to go home - they were going on holiday! Exciting times and then the joy of having a brand new baby girl cousin she could cuddle at last! Going home won out as it had to do. Granddad took her round with her bags packed. She promised to FaceTime me daily and she did the first day. I saw her being able to play with Harry at last. She said she had missed cuddling him so I think she would have made up for it. So she was gone and we were bereft! Colin cleaned and tidied her room and wailed that it was just a guest room now, no clothes strewn around, no dirty washing in the bin, it was sad but it was how it had to be and now we could get on with dealing with me and this pah thing!
She had been a great help to me with my scooter. I wanted to walk but could not cope with hills and tired very quickly. We agreed that I would go up the hills on the scooter and then I would walk whilst she took over. It worked very well and she is astute enough to see when I am tired. On the way back she said that she felt it would be better for me to get back on the scooter to rest, how right she was as all the above was about to come down on my head.
Friday we were up very early, I just couldn’t wait to get to hospital and begin to get sorted out. Colin took me up to the reception of the ward but was allowed no further. Not even knowing at this time if they would actually keep me in or just check me over he was told to go and wait until tests were carried out. It didn’t take long checking my blood pressure to see how dangerously low it was and just how bad my water retention was so I was asked to ring him and say he could go home ..... I was in.
Echo, ECG, Chest X Ray and numerous bloods were all done. Good news the selexipag which had caused all this does not appear to have damaged my heart more than it was in January, This was an enormous relief. Now it was time to come off the drug that helps so many but for me was raising my resting heart rate, lowering my stats and causing me so much damage. I needed to get off it swiftly but in a safe environment and here I am, in the right place at the right time.
I was admitted to a side room to begin with until my COVID tests came back clear. All staff wear face masks and often visors too, I was safe and I felt reassured. Here I remained for two days until I was able to join the ward where I began this pah journey. ( the COVID test is not bad at all so if you need one do not fear).
So here I am, sitting in bed with a cannula in my arm which gets frusomide injected in twice daily and at last I can see an improvement. My thighs which were huge have now at last returned to normal and my ankles, though still not right are beginning to look more normal.
Sadly my blood pressure still remains dangerously low and so today I was told to drop my selexipag to just 200 mgs twice daily. Clearly I will not be allowed home until they see a pattern of a good blood pressure. All is well though. I love the staff and there are two super ladies in here so we can have a natter. Now my concern is for my daughter and family who are in Spain!
No sooner had they left the UK than they closed the air bridge! Fortunately they are in a part of Spain that does not have the spikes in COVID but my concern is the airports and plane. Anyway there is nothing they can do so they intend to take good care and enjoy themselves and worry about coming home in two weeks time. With my son being at theirs too they have no concerns about the animals as they would had they been in a cattery etc. I have not heard from them since their arrival so hope to hear soon.
Surprisingly I am sleeping quite well which is a blessing as no tv, we cannot go into the day room, we cannot associate with anyone other than the ones in this room. As I am rubbish with technology I have no means of watching things on my iPad as some have. But the day passes steadily away and all is well.
I have to tether my iPad to my phone and am worried about running out of data so though I do read your messages I am answering them all here at once.
(Update on this! I have just learnt that we have guest WiFi! Ten years ago there was none and I assumed things had not moved on though this morning I find we now have it) Only been here six days to learn this!
I am so moved by all the lovely support you have given me, it really touches me and makes me feel I am not alone going through this journey. I have no idea yet when I can go home but I want things to be right when I do so would rather stay until all is well.
We are about to come out of lockdown. Let’s hope none of us now loses the battle we have fought so hard due to corona virus. I am reading how many refuse to wear masks which will put us in danger. I feel sure we will be doing all in our power to continue to remain safe and that we ride the next spike which will hit us as sure as eggs are eggs.
Well another day another dollar so they say. Here I am now on day 6 of being admitted. I thought I had finished my blog but it seems there is still more. I am now OFF selexipag totally and they have doubled my frusomide to try to remove all the water ( most is gone) but STILL my blood pressure is low. It may well be that this will increase once my legs are completely good and I am come off the frusomide. We shall see. I am safe though and they want to check more blood pressures rising and sitting.
One odd thing today when they were taking my bloods. All was going well for the first three vials and then my body refused to give more. It was so strange and never happened to me before, The phlebotomist changed the needle twice and still nothing, All we could do was to leave it for a while and try later. After my shower all was well, weird. This has never happened to me before so I hope my veins are not complaining!
Day 7 same again with blood, my body appears to be in lockdown not wanting to give it. They have added potassium to my meds as I am low on it, Nothing else to report. Onwards and upwards.
Saturday 1st August
I think I will be able to go home. Yesterday was a bad day but I think it was the heat. Stats once again low and water retention so I was gutted. Woke to a new day today and I feel way better and the blood pressure is up.
I have been walking up and down the corridors to get my body moving. ( remembering my Pilates instructors mantra “ shoulders back and down and tummy in core engaged “) Yesterday it was so hard to do but today I see much improvement. I am now waiting for the doctor but pretty sure it will be time to say adieu to this lovely ward and a huge thank you and then go home to my lovely husband and garden.
We had a lovely girl in here who is facing the prospect of a transplant, very scary of course. I asked our own transplant girl Catherine Makin if she would talk to her as she is well placed to do so. Catherine was pleased to help ( she had just finished her Jo Wicks exercises and was about to out for a walk. She said how wonderful it was to be able to breath at last. I think these two will get along nicely and Catherine will be honest and supportive. Just what is needed when facing such a huge step. So my stay in the hospital may just have helped somebody in great need by putting them both in touch with each other.
I was told I can go home if I wish or stay over the weekend and go home on Monday just to make sure I feel ok. I decided to go home and here I am. My legs are beginning to swell again which is worrying but I will see how I go on. Lovely to be in my own home though despite being so well looked after in the hospital. Let’s just hope I did not make the wrong decision,,
So I will end this blog now and hope that the next one is brighter.
Warm love to all