[LynnI]

To my knowledge all the blood that I had received was irradiated and filtered and after my thrid transfusion antibodies (E for sure and I think more but can’t remember which ones) kicked in. And it takes them several days to find me a match when I was getting tx.

[LynnI]

Happy B-Day and major Hooots for 19 years!!

[LynnI]

Hi Mary & Kenneth,

Mary, from what I know the VPA has been around for a few years, and my MDS specialist has had other patients on it. However, he tells me he has never had anyone respond to the point that their HGL went up into and above the normal range and certainly never for this long. As of today, my hemoglobins are 123 so they are bouncing around a little bit.
I have a house full of Jack Russell Terriers, breed a little, compete a lot in various events but I am addicted to agility. No I have never been on Animal Planet or the IAMs shows. I am in Canada.

Kenneth,
I know there isn’t as much info concerning MPD and especially MDS/MPD. I have found excellent information at the MPD Foundation & MPD INFO website along with just doing weekly google searches and reading all the abstracts. However, Blood Journal often has full articles that can be read. I don’t bother reading anything before 2007, considering how fast they are progressing with understanding and researching our diseases.

Cheers and keep up the good fight,
Lynn

[LynnI]

Hi Pam,
I am so sorry. Hang in there, you are young and healthy.
I look forward to hearing how you are doing and I will keep you in my thoughts and prayers.

Take care,
Lynn

[LynnI]

This is very interesting, I had RLS which was really bothering me, but I never mentioned it to my doc. This was before I was dx with MDS. For the last couple of years the RLS was terrible, but I haven’t had it for months. Actually I hadn’t given it much thought, until I saw this thread. At this point my hemoglobins are high end normal.
Very interesting……..

[LynnI]

That is wonderful news!! I am sorry that you have to spend the holidays in the hospital.

Please keep us updated, pulling for you!

Lynn

[LynnI]

Choijk,

Thanks, no I am not on any other medications. I am on the same dose of 500 mg per day. I have also not experienced any fatigue or any other side effects from this drug other than some very mild trembling in my hands.
Good luck with your Dad.

Lynn

[LynnI]

Hi,
I want to start by saying I am pulling for you, I know you must be scared and frustrated at this time.

Having said that, I viewed your website, wow, very talented lady you are. And so pleasing to see that you do animials, espeically dogs!!
I am very much into animals as well, especially dogs, horses and cats. Although I don’t have a indoor cat at this time anymore, I just feed and care for the strays that come to my barn.
I compete with my dogs in many events, espeically agility which I am completely addicted too.
Granted running (or trying to run) agility with a fast dog when my HGL are low isn’t easy but we still go out and have fun.

Take care and thinking of you.
Lynn

[LynnI]

Hi Judith,

Being shocked and frustrated must be an under statement. I hope you recieve better news at your appointment.
Please keep us informed as we are concerned for you and thinking of you.

Take care,
Lynn

[LynnI]

^^^ Have you ever been transfusion dependant? And if so, how long between transfusions?

Btw, how wonderful that you are doing so well and for so long.

Lynn

[LynnI]

I sent him an email the other day, wondering how he is doing especially after seeing that his website is down.
I have not received a reply.

Has anyone had recent contact with him?

Lynn

[LynnI]

I am so sorry for your loss my thoughts and prayers are with you and your family.

Words can’t describle the appreication of your continued support for the rest of us with your wisdom and knowledge.

Take care
Lynn

[LynnI]

Bergit
I am so sorry, I was hoping that the VPA would continue to have great results for you as well.
At this point, my Dr.s are trying to figure out if they can why the VPC is working so well for me.

Take care, I’ll be thinking of you.

Lynn

[LynnI]

I’ll second the opinion to seek a Centre of Excellance, as I know everyone here fighting this damned disease or has loved ones figthing it will agree.
My experience with the local Hemotologist was also not pleasant nor was he correct in his dx of me.
My experiences with a Centre of Excellance since then have been positive and successful. I agree that they are extremely compassionate and humble.
Good luck
Lynn

[LynnI]

Update for those interested in this treatment.
My hemoglobins have been 117 for the past two weeks and I have be extremely busy and active, therefore burnging them up.
Last night at a hockey game, I jogged up three flights of stairs and back down again in a row. For the simple reason that I could and hardly out of breath. Before starting this treatment I couldn’t have walked up them, unless it was directly after a tx, even then it would have cost me for several days.

[Author]

Posts