Genetics may be the Heart of the Matter

It's May already and although the first of May has started off wet and cool it can often be a glorious month, so I am really looking forward to it. The forecast for the first bank holiday of the month and this weekend is looking good. I'm now seven months post transplant and still doing incredibly well.

I had a bit of a blip with my lung function levels during the Easter period, which went a bit haywire and dropped a lot more than they should, but as everything else showed up totally fine I just had to keep a careful watch on things to make sure they didn't continue declining. It was put down to my reduction in steroids, which the team had reduced on my last visit. I ended up missing the PH conference because of it, but decided it safest to err on the side of caution, as I wasn't sure if I was coming down with something or not and my immune system is already very low. I didn't want to risk the chance of infection as the conference is very busy with lots of people, but I was disappointed to miss my friends. My lung function readings are now much better again and back to where they were, so I think I did the right thing.

This month there is a feature on the genetics of Pulmonary Arterial Hypertension in the British Heart Foundation magazine, 'Heart Matters' and Professor Morrell, who is heading the research, explains all about it. I was also interviewed for this feature, having had Idiopathic Pulmonary Arterial Hypertension before my transplant and having been tested to see if I carry the known genes that can be an indicator that it may be in the family. The research work is a continuing process, but there is hope that there may be a breakthrough, which will enable the development of future drugs to help all PH sufferers. The British Heart Foundation have given generous funding to enable this research. Below are the links to the articles.

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah/kath-graham.aspx

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah.aspx

A cure or breakthrough cannot come too soon. Some of my friends are really suffering with this disease. Several are waiting for transplants and are having to face long waits because of the shortage of organ donors and then they will have to go through the process of the transplant and the ongoing care and drugs that are required afterwards. If a cure could be found or better drugs to control the condition then patients wouldn't have to face these options. 

Some of my friends are coping with other diseases, such as Lupus, which has also caused their PH. Others have PH through having bloods clots on their lungs and although they have had their PH improved through having the Pulmonary Endarterectomy operation to remove the clots, some of the clots are too distal for removal, so they still have to cope with PH. Many PH patients are not eligible to have a transplant, so the biggest hope is that a cure can be found or a breakthrough that can help the treatment of PH more efficiently. 

We all live in hope for this day and for a breakthrough to come soon. 

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!