Moving House, Moving On

It's been another busy, busy week with lots going on.

Waiting to unload!

Monday started with Sarah and Oli getting the keys to their new house. They started the process of buying the house just before I had my transplant, so I was hopeful I would see them get the keys and see them settled in their new house, although I knew I wouldn't be able to help them in the condition I was in with my pulmonary hypertension.

And we are in!

I'd forgotten how stressful buying a house is, how you have to keep chasing solicitors constantly and keeping up to date with what stage things are at and then chasing again and again. It always feels like everyone is sitting about doing nothing until you keep pushing and then another little thing gets done, small steps at a time. I'm sure it could all be a lot quicker and efficient, but nothing seems to change over the years. So it hasn't surprised me that it's taken four months to complete the sale, with the little blip of my transplant and Chistmas thrown into the mix as well!

Most important job - getting the internet sorted!

Because of my transplant, what has been really amazing is that I was actually able to help out with the house move. Of course I couldn't do any of the lifting boxes and heavy furniture, but I was able to help unpack boxes and put things away. So I was left in charge of sorting out the new kitchen and making the tea. I had plenty of energy for both, not like old times when just getting to the new house would have been an effort, let alone trying to do much to help.

That was a lot of boxes - tea break needed!

It felt another big milestone in my journey since being unwell - to see my daughter buy her first home with Oli and help them move in. It is something that as a mother I have always looked forward to doing. We are planning a shopping trip or two next to buy some nice bits and pieces for the house and I'm looking forward to helping them transform the garden in spring. There seems so much to look forward to now, especially as I'm able to do much more than I could.

Kitchen looking good!

Tuesday was time for the transplant clinic again, both for blood tests to check my Tacro levels and to collect more drugs as my Prograf drug dose has been increased. It was a quick visit for once and we had time to visit Sarah and Oli on the way back - they are nearer to Papworth than us now - exactly 38 minutes to be precise! That may come in handy!

At last - all unpacked!

Next up was a visit to the dentist, my first one since my transplant. I've been going to my dentist for 22 years now, so he was interested to know all about my transplant. He needs to know all about the medication I am on and keep a very watchful eye on my teeth. My medication can cause problems with my teeth and gums and it is one of the stipulations of going on the transplant list that you visit the dentist for check ups regularly and continue to do so. I was pleased that all was fine, especially in the light of my operation and being on a ventilator and having various tubes and cameras in my mouth,  throat and windpipe, which can also cause damage to your teeth - in the process. I also had to rely on other people cleaning my teeth for me during those first weeks after the operation and no matter how hard someone tries it isn't the same as doing it yourself, so I was a bit bothered my teeth had taken a hammering. 

Smile please!

This morning it was time for a photo shoot and a photographer working for the British Heart Foundation came to visit to get some photographs of me for their article on Pulmonary Hypertension. I was interviewed for this article earlier this month and it is going to be featured in the May edition of 'Heart Matters'. Now I was a bit nervous about this one as I got a whole itinerary from the Art Director about what to wear, what they want to achieve and how it may take a few hours - all the other photographers for the newspapers and radio that have visited usually just take a few quick shots and it's all done and dusted in a few minutes. So I found myself worrying about what I should wear and chopping and changing my mind every five minutes about it. A typical woman, I suppose! It turned out to be lots of fun though and hopefully there might be a few good pictures! 

Oops think we need another!

You can sign up to the 'Heart Matters' magazine on line, it is a useful and interesting magazine both for people with heart problems who want to learn more and for those who just want to be healthy and look after their heart health. Click on the link for more information and to sign up to get the magazine - it is free. Look out for the May edition if you do sign up!

www.bhf.org.uk/heart/how-we-help/information/heartmatters.aspx

Another smile...that's better!

MOT Week

This week has been a busy week of check ups and appointments for this, that and the other, as well as being the beautiful, warm, sunny week that we all have been waiting for.

Wimpole Estate

First stop was Monday and a visit to the hairdressers, just an ordinary mundane or pampering experience for most people. This is one that I usually mostly enjoy, but it does bring with it some stress for me these days. The simple action of just leaning over the sink for a hair wash can make me very breathless at times; ridiculously just leaning over a sink uses a lot of my energy in one go and I can feel my body straining to cope. In turn I can feel the Epoprostenol drug start to kick in and my face turning a bright shade of red as the drug does it's work and opens up the blood vessels so my heart can cope, I often look and feel as if I have done three rounds jogging furiously round the block by the time they are towelling my hair dry. With this comes the fear of fainting, which I do not want to be doing in front of everyone in the hairdressers, so I am always a bit anxious until this part of the process is done with. Rob usually drives there and back to reduce my anxiety. Luckily my hairdresser knows me well and all about my illness, but even so I don't like people seeing me like this and I pretend everything is normal and sit there trying to look calm and collected because I don't want to be 'different' than the other customers, although I feel it. My hairdresser has sometimes asked me what the rash is and I have tried to explain that it is strenuous for me to just have my hair washed and it is just my drugs working.

All went well for this visit and as most people do at the hairdressers, I felt I'd had a pampered afternoon out and felt better for a new trim. My body behaved itself for me that time.

Greenhouse at Wimpole

Next was a visit to the dentist on Tuesday for some root treatment. It is important for transplant patients to keep bang up to date with dental checks and treatment as infection can spread easily into the body from the gums and therefore, if your teeth and gums are in bad condition you can be at some risk post transplant. It is one of the stipulations of going on the Transplant List that you have regular dental checks. The dentists is another place I feel quite vulnerable, like many people I don't really like to go to the dentists anyway, but having to lie quite flat, with someone's hands in your mouth when your breathing is already impeded can be something of an ordeal and there is a very real anxiety of getting breathless and then the fainting starting again. Lying flat can also start of palpitations for me, which is another worry. Breathlessness and palpitations usually spell a faint looming in my case and fainting means my  heart not coping and I don't want all this to start happening in the Dentist's chair. But I managed to have the treatment done successfully and mission was accomplished.

I am lucky I have been going to both my dentist and hairdresser for many years and they know all about my illness and are therefore both respectful and helpful throughout every visit. It is really hard for people to understand, as to everyone else passing through the dental surgery or hairdressers I just look like any other person and that's exactly how I want it to be; I want to be part of the real world and I long to be able to feel I could just go out normally without having to think about the consequences of everything I do. It can feel really hard at times to just undertake such casual, normal things that happen easily and naturally every day for most people. I know if I ever have my transplant and it gives me my health back, it will be just these simple things I will be able to do again without stress that I will value the most every single time I wake up in the morning.  

Thursday I had an appointment at the Lister Hospital with the ENT specialist about my ongoing ear problem and to get the results of my CT scan. As I had expected and hoped all was well - well apart from being a bit deaf, which I am told can be normal for my age! I've now been discharged, so that is one less thing to worry about.

My week was rounded off with a visit to the Transplant Continuing Care Clinic for my review. Again all went well here too, just the usual blood tests and checks by the consultant. We met a new consultant today, who was really approachable and lovely and we spent some time talking to Anne, the Transplant Co- ordinator. We also had the chance to meet Bernice at last, another heart and lung transplant patient, who we have been in contact with and was featured in the same news report as us when we took part in ITV's 'From the Heart' campaign. It was lovely to meet her.

A wishing well and sunny skies - guess what I wished for!

So all in all a very successful week. We have now nearly got to Saturday and I feel like I've had a full MOT. With my shiny trimmed hair and my sparkly teeth, I know my heart and lungs are still on their best behaviour and there is nothing sinister about my ear, so all is good with my world! The sun has shined and it's been a lot warmer too, which I think we've all been waiting for and enjoyed. We have, as usual, tried to make the most of the week and have enjoyed the garden and the plants that are now emerging and daring to come out after all the cold; we have enjoyed meals in the sunshine and managed to get out and about in the warmer weather in between all the comings and goings.

After 586 days of being on the Transplant List, I am still on course for having a heart and double lung transplant. It is becoming a bit of a fantasy in my mind after all this time and still feels as far from my grasp as it did when I was first placed on the Transplant List. I am, for now, just grateful that I am feeling quite well and able to keep on enjoying life as well as being well enough to stay on the Transplant List.  

Daffodils at their finest at Wimpole