Hello, Jon!
Where are you? In L.A.?
Best wishes!

Jon, that's exciting news. You're talking only a month or so away for a transplant!

I hope that you will keep us updated so we can follow along with the steps involved. I'm sure that some of our young transplant-eligible members (where are they?) would be interested in your experiences.

thinking here. uh oh! lol anyway I was wondering about the cost involved in donating or being tested. does anyone have any idea?

counts a tad better this week with plts at 17 and hemo at 8.9 so he gets plts and blood tomorrow. poor guy! to top it off I am sick and can't go around him :(

Posh we're always glad to see even small improvements. I like the positive outlook. When they told me my WBC was 1 I said yea well it's been lower LOL.

I here you about being sick. We saw one of my nurses in the store the other night and she have me a hug like she always does then I noticed she sound raspy and rough. I asked if she had a cold and she said just starting one and the he he said oh crap and I just hugged you. So far so good. Biggest exposure problem will be my daughter, who is temporarily living with us, gets her kids every two weeks plus Thanksgiving so I'll be exposed to them for three weekends in a row with a lot of flu and colds going around.

On a side note we toom Mama to the heart doc today and after several tests she said that Mama not only did not have congestive heart failure but instead her heart was in perfect shape. Considering a family history of no living as long as her due to heart problems, and some weight issues it was a huge blessing and big load of our minds. Not even counting that her Cobra insurance stops in Jan and Medicare won't start until Jan of next year.

Have a great week everyone.

Mike

Posh, that's good news for your dad, not so good for you. I hope you get over this bug quickly.

Mikey, that's incredible about "Mama." How could the diagnosis have been so wrong? And now what?

yes good news for him! or was. it seems when he went to get his blood today he was running a temp so they had to wait til it went back down. still waiting on a call back from the dr! guess I won't be getting it this late though errrrrrrrrr

I haven't really been to good about writing lately but I have been reading.
I just wanted to let everyone k now that I my counts are normal at the moment. Revlimid has raised my hgb up to 11.6! I am so excited and my doctors are amazed at how well I have taken to Revlimid and how quickly it worked for me. Now I am just waiting for my perfect match to have the transplant.

Jeanine that is great news! I am so happy for you!

Dad is not doing good at all. He just called me and I swear it was like he was telling me goodbye. He said he laid in bed all evening thinking about me. He really wants to stop his transfusions but thinks it is committing suicide. I don't share those feelings and let him know it was ok if that is what he wants.

Posh, as always you and your Dad know your in our thoughts and prayers.

My daughter-in-law's brother, a special needs guy, has been in the hospital and in and out of the ICU for weeks now. The family is at that point where they needed to make the hard decisions as what to do when. The choice of ventilator, tubes, strapping him down, etc to keep him going with a very small chance of improvement or keep him comfortable and with as much enjoyment as possible. After talking with doctors, folks like me, and each other they opted for comfort and quality of life. It's amazing to watch the Lord at work. He loves to sing, loudly, play with cars and draw and after they got him doing these things his oxygen levels went up to normal. We don't know what time he has left with us but he is himself right now and that is a huge blessing to us all.

Like all of us here with this junk, I will fight for everything I can get. That said, one of the hardest things I've ever had to do was write my living will. But when I realized that what I gave to Mama and the kid's listed was the ability to make these decisions based on my instructions and without guilt, it became ok. It's awfully hard to tell someone when it's ok to let the Lord take it from there.

Posh God knows your Dad is in good hands with you. Turn it all over to Him and when He and your Dad figure it out it will be just right.

God Bless you our friend and all of us on this list.

Mike

More thoughts and prayers and hope that you and yours shall have some peace and serenity with any decision you may make. I shudder to think this is a preview of coming attractions. David has had a much better quality of life with the higher numbers...........we do one day at a time.

Mike my prayers to you and your family. I can't make this decision for Dad but I can tell him how I feel about it. He has a strong faith in God and so do I. Dad thinks if he stops treatment he is committing suicide which is not true. God would have taken him months ago if not for the transfusions. I would rather Dad go to Heaven than suffer like he is right now. He is growing weaker all the time and now his veins are getting really hard to get first time.

mary I know what you mean hon. Dad's health was not good to begin with. He only has one kidney had triple bypass in 06 and numerous other things. He chose not to do the vidaza and that was ok too. He has already lived longer than what they gave him at diagnosis. I really don't mean to make you feel bad. Enjoy every moment you have with your hubby. Make it count.

It's interesting that your dad would consider stopping his xfusions a form of suicide. Actually, I feel the other way around. Continuing them beyond the point of relief & comfort is almost thumbing your nose at death, so to speak. Dying naturally, without intervention, is nearly unheard of these days, isn't it?

One of my heroes is my ex-mother-in-law, who became dependent on dialysis many years ago. In those days, it required many hours a day, several days a week. She chose not to put herself or her husband through that, and declined. Now there's a gal who probably had a great faith in life after death (as do I).

However, it's easy for me to talk. My last Hgb was 10.6, up from the last two times, so I'm feeling pretty darned good.

I'm so glad, Posh, that you made your views clear to your dad. He might be feeling guilty at deserting you in this life. I told my mom the last time I saw her that it was okay for you to go (she was asleep at the time). In about a week, she was gone, bless her heart.