No Funding For Us...

We got our letter today in the post. It's not good news:

We have been declined funding for our surrogacy. We can't appeal and can't complain.

Basically the decision has been made because, apparently, there were no exceptional circumstances (just carrying a baby could potentially kill me or shorten my life dramatically) and we didn't fit the funding criteria. They have sent me the criteria and it is because my medical condition and treatment doesn't affect my eggs or Josh's sperm. For example, if I had cancer or was about to receive cancer treatment and this was to affect my eggs then we would get the funding, likewise, if Josh had cancer and the treatment was going to affect his sperm and kill them, then we would get the funding. We don't qualify for this as both my eggs and Josh's sperm isn't the issue so they don't actually fund surrogacy.

Josh is at work and we have told family who are all supportive but there is nothing anyone can say or do to change the situation. We are both very upset, frustrated and angry. Everyone has been so positive and optimistic that we would get the funding as to us, it was a clear cut case, however, things never turn out as planned. I can't really write much else at the moment as I don't know what to say other than it being followed by many many swear words!

On another, slightly more positive frame of mind: we are going to get started with some fundraising. I have always disliked the idea of some fundraising pages - don't get me wrong, some of them are amazing and help people in times of need - but I'm just stubborn and come from the mindset of 'why should someone just give me money' 'it's not up to them'. Since starting this blog though, many people have asked if we have a donation page as they would like to help, so..... I have set one up and the link is below. We will be arranging some fundraising events which we will let you know about once they have been organised. Any ideas or help is welcome!

https://www.gofundme.com/the-making-of-baby-thomas

Thats the link to the page above. Please feel free to share this blog or the link. Any donations or any help in spreading the word is honestly appreciated so much by me and Josh.

Will update more soon when I'm in a better frame of mind. I knew this journey wasn't going to be easy, however, the journey hasn't hardly had a chance to begin yet....

Still waiting...

We had our second appointment on Friday 9 November to meet with the surrogacy team. The week before, we went up to the hospital for my ultrasound for them to look at my womb and ovaries and see where they are and what condition they are in. I didn't realise it was an internal ultrasound! I went behind the curtain, stripped off from the waist down and wrapped myself in a sheet. It was uncomfortable and a very strange feeling when she turned the camera but Josh was there watching the screen very interested and holding my hand. I was told my womb was fine (typical - as I clearly wont be using it!!) but they were unable to see my ovaries. She said this was common as it depends where you are in your cycle and other reasons so I would have to have another one when we came back for our appointment to try again. 

At our appointment the consultant didn't say too much because we can't move on any further in the process until we hear about the funding. We are still waiting for an answer as they are getting more information and putting it to a panel who will meet and discuss the case. We have our next appointment on 28 December so we should definitely have an answer by then. If it a 'yes' then we will be so happy, however, if it is a 'no', then we won't be able to continue on until we save £7000-8000. We are currently about to get our mortgage in principal to buy our house so we will be unable to save this amount. A few close friends have mentioned fundraising which I would like to do if we get turned down. We will just have to sit and wait with everything crossed. I did get my blood test results which were good and told us that I had 16 eggs. He said a bad result would be 5 so he was more than happy with my number.

Josh got his results from his sperm test, but, because it will be over 3 months since he gave them the sample, he will have to do it again before our December appointment in order for it to be the best it can be ready for creating the embryos. The percentage they like to see for sperm is 4% and Josh's result was 2% They said this was ok and that there can be many reasons for it being slightly lower such as stress, diet and when he did the sample. Like I said, he has to do it again anyway so the results don't matter too much now anyway. I know he was annoyed that he has to do it again but we both want the best and freshest result so it needs to be done!

After our appointment, I went over to have my ultrasound again. This time, she managed to find both ovaries. The left side was perfect and showed 5 follicles but the right only showed 2. She said this was perfectly fine. I was more relieved than I realised I would be. My body has let me down during most of my life with many parts of me not working or functioning properly so I just assumed that may be the same. I've even previously spoken to Josh about the 'what if' I don't have good eggs or they can't use mine.... at least the baby will definitely be mine and Josh's. Such a big positive for me at least.

We asked the nurse a few questions about what to expect for the next steps after the ultrasound for me. She has told us that, at our next appointment in December, if we have been given the funding and we get Josh's sperm sample done and ready, then I will be seen by a nurse who will teach me how to do injections. I already do plenty of injections daily because of my CF-related diabetes so I'm sure I won't need that much training! These injections will be for 10-14 days and will help make sure my eggs are in the best conditions ready for them to be fertilised once they are removed. While on these injections I will have to have scans practically every other day and travel up to the hospital each time as they need to keep a close eye on things. So this next step will happen in January IF the funding goes ahead. 

So that's it until we get a letter through the post with our funding decision. We are slightly upset as we built up this second appointment and were very excited but not much has moved on. We are stuck until we get that decision. I'm sure we will hear during November. I'm just happy that my body hasn't let me down in this area so far and that the baby will be both mine and Josh's. 

Funding....

First of all, I want to thank all of you who left a comment or messaged both me and Josh when we shared our blog and information for the first time. We were so overwhelmed with the support and really didn't expect it. It was an amazing response and some people went above and beyond trying to help anyway they could. This process is going to be a long one so at the moment we are taking things appointment by appointment and learning ourselves along the way.

Since the last blog there haven't been anymore updates so that's why we have been quiet. The only update was that we had our next appointment booked in for Monday 29 October but it got moved (for whatever reason) to Friday 9 November. I still have to go up on 29 October as I have my ultrasound but we will update once we have had our next appointment.

We received a letter a few days ago about our funding application. We were surprised as we didn't think we would hear anything until our next appointment but we got sent a copy of the letter that was sent to our surrogacy doctor. Our surrogacy doctor applied on our behalf for us to be considered for NHS funded Fertility Preservation. The initial application has been ACCEPTED and our case will be considered at the next available funding meeting!! 

We are both very happy that we have progressed through the first stage and want everyone to help us keep our fingers, toes, arms, legs and eyes crossed that we get accepted at the next meeting. I don't like to think negatively but we are both really worried we won't get the funding. I don't see why we shouldn't - there is no arguments about the situation - I can't carry a baby - end of discussion! Believe me, if there was a way round it, I would. Most of you know how stubborn I am but in this case, I would be being selfish and very stupid to go against medical advice. Even though I've had my transplant, it still isn't a cure. I still have a suppressed immune system, low body weight, diabetes, tiredness and Cystic Fibrosis. 

So if we don't get the funding we will still be following our same plan and route for a baby - it will just set us back a bit more in time and we will do all we can to fundraise and save.

The First Appointment...

On Wednesday 29 August, we had our first appointment at the hospital to start our surrogacy journey. We were both so nervous as we had so many questions and didn't know what to expect. We signed in, I had my height and weight done and then we were shown into a room where we met the main man that deals with the process. He was lovely and straight to the point. He had my referral notes from Harefield that said why we were there and he went through medical information with us both. He straight away told us that he would be happy to help us!

He told us that there are 2 parts that need to be paid for: the first part was the expensive bit paying for the hospital to create the embryos which would be £7000-8000, and the second part would be paying for the embryos to be transferred into the surrogate which is around £2000. He is applying for funding for us for the first process but the second process is not funded so we will have to try and pay for that ourselves. We will find the money no matter what!

He said the process will take as long as we need it to and everything will be done when we are ready. The embryos, once fertilised, can be frozen until we are ready to use them. He also added that we will be given a counsellor who will help us with all the legal side of things as there are things that need to be drawn up and signed throughout the process between us, the hospital and the surrogate. He gave us 3 forms which involved 3 different tests and procedures that we needed to do before the next appointment - 2 of them were done straight away. The first was a blood test for me and from this, they can find out how many eggs I have. I showed them my best vein as I hardly have any due to the years of blood tests, lines, etc... and this was taken with no problems.

The next part was Josh's 'donation'. To produce his semen, the form said you had to not have any sexual activity for 2-7 days (no longer) and make sure everything was clean. It was a Monday-Friday walk-in clinic so I said why don't we go to the department straight away to save him coming back. He was given his pot and taken to a room. Without going into too much detail, he finished and came out and laughed all the way home! It was very clinical and the DVD provided was very out of date but at least thats done with.

The last thing was for me to do was for me to book in an ultrasound of my uterus. This will give a clear picture of where my uterus and eggs are and if the egg retrieval will be straight forward or more invasive. Since coming home, I have called and booked the appointment for middle of October as I am off work for half-term.

We have received our letter through from the hospital this morning with our next appointment which is Monday 29 October. That was perfect as it fell on one of Josh's days off and I will still be off on half-term. Result! At this appointment, we should find out if we have been given the funding, will get the results of mine and Josh's tests and see what the next stages are.

Exciting but nervous and hoping it all goes as smooth as it can. Until the next appointment.....

You Can't Carry a Child...

I have always known that it may be difficult, if not medically advised, that I should not and could not carry a child. I have always loved and worked with children and always spoken to friends and family like I would definitely be a mum one day. However, since turning 30 and me and Josh looking at houses and marriage in the near future, I wanted a definite answer.

I had a regular check up at Harefield in June and asked to speak to one of my main consultants so I could ask and get some answers. It was then that I was told no, they strongly advised that I do not get pregnant. I know many CF patients who have had babies and this just depends on how well you are, however, becoming pregnant once you have had a lung transplant is a different issue. If you become pregnant after a transplant, no matter if you are in good health or not, your antibodies will raise which can cause your lungs to reject. This is something that both me and my family do not want me to even risk. It would also be unfair and selfish for me to get pregnant and risk dying basically after everything that both me, my family, friends and medical team have done to keep me alive! So there is nothing I can do to change this situation.

At first, I spent a few days really upset. I really wasn't surprised by the answer but to hear it for definite makes it more final. My body failing me yet again. Josh was brilliant as usual with his response and said we would do whatever it takes and that he would be by my side no matter what. I know my family and close friends were quite relieved that I was given that answer as they didn't want me risking my health and want me as healthy as possible after everything.

Harefield had said they would refer me to a hospital that they work with so that we could have a chat and get some information on surrogacy. After a few weeks, the appointment came through and we were given a date for the end of August. Nerves and excitement then overtook the upset and disappointment. I never feel sorry for myself for too long and always try and find ways around things and this was just another hurdle to try and overcome!