Julie's Adventure

[Julianna]

Thank you Dick. I really appreciate your reply. Nice to know that there are others with me in this. Have a good day!

Jules

[Julianna]

Platelets 22. Seeing Hemo and BMT guy on Friday. But I bet they still can't do anything. So I am just going to go in with my list of questions.

Do any of the ladies here have issues with their periods? I've had an ovary removed because of endometriosis several months ago. My platelets were on the low side even then. And now a familiar pain is back to haunt me! How do I know that I won't one day bleed out inside?

Is the pill the way to go? Any thoughts? Experiences.... ?

[Julianna]

I found some answers to a lot of questions yesterday... and BMT is the prefered option for me. I have secondary MDS. Been through treatments for AA and so don't qualify for clinical trial. And they've even found an unrelated match for me! So in the next few weeks I will learn more about what, when how....etc....

I feel relieved to know a bit about how to plan my future. And that my troubles may be able to be fixed!!!! Early days though. Lots to think about.

Take care all...... talk soon.

Jules

[Neil Cuadra]

Julie,

It must be a relief to know what the plan is.

Congratulations on finding a matched donor! Do you know if it's a man or a woman or his/her age?

[Laura]

Julie, That is awesome! I bet you are thrilled to know you can beat this once and for all and move on with your life. Laura

[Julianna]

Thank you Neil and Laura.

It is SO hard to think about anything else, but BMT. I don't know much about the donor yet. I'm waiting for the hospital to call me about my next appointment, which my Dr said will be in the next 2 weeks in the transplant unit... and answer my many questions. Still just processing it all. I didn't think they would find someone so soon.

I have some complicated decisions to make also. My family and possible support people are in Queensland and I'm in Victoria. I may have to move back to Brisbane (Qld) for the procedure. I'm guessing that BMT isn't something you would want to do on your own.

Lots to think about and organise. Step at a time...

[Chirley]

Hi Jules,

If you decide to come back to BrisVegas, am I right in thinking you'd go to the RBWH? My doctor works there as well as the MPH, Redcliffe and Wesley.

When I was discussing my reluctance to have a transplant with him today, I mentioned that mucositis sounded absolutely hideous. He told me that they give you a PCA with Ketamine in it and that it's known for knocking you out so that you can be in La La Land for most of the worst bits. At least that's reassuring. I've never had a narcotic, I refused analgesia even after I had 2 bone grafts on my spine 30 years ago. I'm a lot more sensible now, bring on the drugs if they make you more comfortable, that's my new philosophy.

I wish you well in whatever you decide to do and wherever you decide to go.

Good luck.

[Julianna]

Hey thanks for that. Yes I would be going to the RBWH... but it seems that I will be staying here. But it's still not in concrete! The truth is I don't have a lot of support wherever I am. But I've learned that the Royal Melbourne is one of the best for up-to-date treatment in Australia... (I'm not knocking the Royal Brissy because I was really impressed with the old BMT unit and staff care. That's where I had ATG etc over 10 years ago.

I've woken up a bit more settled about it all. I know my sister is praying for me... and I'm sure others are too. Transplant is a scarey process. But the truth is, I do trust our Creator to provide all I need. Even pain killers!

Thanks for your support my friend.

~ Jules

[Chirley]

Hi Jules,

I heard through the Leukaemia Foundation Forum that Melbourne had some of the best BMT/MDS doctors as well. I have heard of Peter Mac on more than one occasion. I think you would be making a good decision if you have your transplant in Melbourne.

Part of the reason I'm putting my transplant off is because of my lack of support as well. I have very little family, just a sick brother and elderly parents. My small circle of friends would not be able to help as they all work full time and have their own families and own problems to deal with.

I'm happy for you that you have a faith in God to keep you warm. I am an atheist and don't have that comfort. I can't force myself to believe in God, if you don't believe, then, you don't believe. I sometimes get a little jealous of the comfort believing in God must provide. I think that it is a wonderful thing to have faith, no matter which religion you follow.

Keep well.

[Julianna]

I've had a good chat to a few people - family and friends etc. I think that this could work. Some people are really kind. I've decided to have the transplant here in Melbourne. I trust my Doctors opinion. And I know the future may be bleak if I don't do it now while I'm young and reasonably healthy.

Have my first appointment at the BMT unit for a discussion on the 2nd of June. So in the next few weeks I will be writing down my heap of questions... but you know I wonder if sometimes if it's ok to not have to KNOW EVERYTHING, right at this moment! Step at a time... and enjoy my life while I can. In the lovely outdoors... and smell the roses... and do lots of shopping!!!!!!!

A few of the things I may not be able to do during the whole BMT process.

I'm believing this is going to be one of the most positive experiences of my life. Thanks everyone for your support thus far.

Jules

[mscrzy1]

Julie,
It is fascinating to me that we are the same age and diagnosed with AA in the same year. I had the ATG treatment, too with complete recovery, and I'm just now starting to see abnormal counts that are slowly creeping down.