Posh, You already know we are all here for you in this hard times. Remeber a couple of weeks ago the goal was to make it through Christmas which he did, though not as you all would have liked, at least he made it through. Right now your new goal for him is as much comfort and quality of life through all that you are doing as possible.

You continue to be blessed with the time you have to talk and enjoy each other so give thanks and know not only us but the Lord are there to walk each step with you.

God Bless you and your dad my friend,

Mike

Posh,
I'm so sorry you're going through this. I know how hard it is to try and prepare yourself to let your father go. Twice my dad was in the hospital for infections and both times we were told he might not make it. My heart just broke. It sounds like you and your father have an amazing relationship. I'm sure he is comforted knowing you are there for him.
Know I'm praying for you, your father, and your family. And, Mike said it best when he wrote that not only are we here to walk these steps with you but, so is the Lord.
I don't post much, but I read all the comments. Please keep us posted.

Julie

yes I am very blessed for sure! thank you all so much for the love and support.

Dear Leaky Boat Crew,

Finally we're getitng somewhere. Lou's been having great difficulty breathing for about a month now.

On Tuesday we saw his oncologist and we were sure his hemoglobin would be around 9.0. We figured he would be getting another transfusion (they want to keep him in the high 9's due to his heart failure). BUT WAIT...THERE'S MORE.

We were pleased at first to hear he had a hemoglobin reading of 10.1 down just a smidge since his Dec 15 transfusion when he reached 10.4.

Had an appt. to see his cardiologist this morning at 8:30 a.m. (holy cow that's an early appt. when we have loads of snow, temp. in the teens, and he hasn't been waking until 10:30 or so. He's been really tired because he's waking throughout the night because he can't catch his breath and only gets relief if he sits up on the side of the bed).

Just found out that he had a bad PFT (pulmonary function test) but the cardiologist wanted him to see a pulmonologist for further diagnosis. It's Dec. 30 and all our doctors are closing their offices tomorrow....but we managed to get an appt. at 11 am today - wow!

Pulmonologist wanted Lou to have a chest x-ray (last one was in Sept. when he was in the hospital). They got him in to the radiology place and doctor got the results and called to say he has several liters of fluid in the base of his lungs. They're treating him with additional lasicks and if he feels any worse tomorrow he's to go to the ER to get a dose of IV lasicks - which will work much faster.

ANYWAY - we're finally getting somewhere...hoping for a good night's sleep tonight. I've been off all week and we've spent most of the time visiting doctors, calling for meds, or receiving oxygen bottles.

Lou wants to bounce back and get another chance to enjoy life a bit. There's no talk of chemo any time soon, since his numbers are holding steady...it's just his weak heart and excess fluid.

Hoping to play some cards with friends tomorrow evening to celebrate the New Year. We are aiming to celebrate early...around 9 or 10 pm.

HAPPY NEW YEAR EVERYONE - and "cheers" to you Captain Chris! and the Leaky Boat Crew.

Lou & Gayle Najera

#1100 - Yippee

This one is for you Captain Chris!

Hey gang,

Gayle and Lou it sounds like your making some headway and that's fantastic. You guys like Posh and her dad along with everyone else here remains in our prayers for now and the year to come. Let's give this junk we have every ounce of fight we can muster for the new year. Our buddy Captain Chris found every new reason he could to fight even harder and we can too. You all have a great new years weekend and join me in stepping into 2011, holding God's hand and with the gloves on and working with our docs to find all the new jabs and upper cuts we can so we can get that knock out we're looking for.

I just had a fantastic week with my family in town. 4 of them were on tail ends of colds, which hopefully was past the contagious part. My son, on Monday, came down with the flu, high fever, etc. and isolated himself in the bedroom. Of course his wife had contact with him but we stayed apart so again fingers crossed it too will pass by. Normal time to know if you have it is 24 to 72 hours. They left (he had beat the fever by Tues a.m. on Tues afternoon so maybe if I can get through today and tomorrow I might avoid it. I'm supposed to go in to get port put in next week so hopefully it will just be a nervous period and nothing more.

Have a very Happy, productive and hopefully remission filled New Years everyone.

God Bless,
Mike

I want to wish all our leaky boat crew a happy New Year. I know for some that this isn't likely, but you know that you have friends here who understand what you're going through.

Christmas & New Year's always make us feel more vulnerable to sadness, maybe because we're supposed to be joyous. (That doesn't sound quite right, but hopefully y'all can interpret my meaning.)

Bless you, Gayle, for doing #1100 for Cap'n Chris. I was a little slow in posting & feared I'd miss it. I'm also glad that Lou's getting more info on what's wrong. Sounds like a lot of fluid in his lungs, no wonder he can't breathe! Maybe he'll get a second lease on life now.

Mike, you've been a rock for our crew. Hope you come out unscathed from family germs.

Happy New Year everyone! Gayle does Lou have congestive heart failure as well? My dad does and he is on oxygen full time now. his therapist came out today and took him outside for a few minutes without it and retested and he had dropped back down into the 80's so back on it he went. We will be talking to hospice soon so they can do his transfusions at home instead of running the risk of hospital infections every week. Good luck hon

Yes poshshorty - CHF is what is making MDS so hard. His Sept. 13 heart attack was brought on by his low blood count...he apparently had a bleed somewhere (they never did find the source). Anyway, low blood count caused the attack and damaged his heart more than it was to begin with. He had his first heart attack in 1988...which caused him to retire in 1992 at the age of 55. Boy it would be nice to retire...I'm 55 now!

Yes, 24/7 on the oxygen...he dips into the 80's without it, he dips into the low 70's when he's sleeping and they ordered oxygen after a sleep study of his oxygen levels. When he was having so much difficulty breathing...they suggested he start the 24/7. Maybe if we get rid of this excess fluid...we can go back to just at night.

We'll see..

Be safe tonight everyone - HAPPY NEW YEAR!

Gayle & Lou

They admitted Lou to the hospital today. He's retaining fluid (in his lungs) and his blood count is down again. Lasix and transfusions to tune him up...as soon as he's stable, they want to replace his heart valve. He's scared to death. I hated leaving him at the hospital but I had to bring the dog home. Our hospital knows the benefit of having pets visit patients.

The prospect of living life in the condition he's been in the past several weeks scared him more....he's happy to be on the right road (FINALLY).

Prayers and happy thoughts are all welcome.

Thanks leaky boat crew - it's nice to have you out there for support.

Gayle

Aieeee, Gail, what a time you & Lou are having! It's scary, but as you say, at last he's on the right road. We're all pulling for him.

Gayle and Lou you know your in our prayers. My brother in law, at 73, just went through surgery for heart valve repair and several bypasses. He was home in a few days and is doing great. It is amazing what they do these days. You both stay in our prayers and smiles are sent your way.

I'll have a busy week next week as well. Monday will have a bone marrow test, and chemo followed by chemo each day and on Wen. having a port installed.

Have a great week everyone. The good Lord has us by the hand no matter what steps we need to take. Keep those smiles going.

God Bless,
Mike

oh Gayle! bless yours and Lou's hearts. Dad is retaining this week too but thank goodness they let him go home from the dr yesterday and not facing surgery. make sure they pump him full of platelets if he is low. when they put dad's port in they were putting in plts at the same time. I will keep you both in my prayers.

Happy New Year everyone. I am doing well. Hemoglobin is holding at 12 during doctor's visit this week. I am keeping everyone in my prayers. Just gearing up for our possible 4-6 inches of snow coming to Atlanta area this weekend. Be well everyone.

LaDawn

I just got back from my Dr. appt. at MD Anderson yesterday. I am on month 22 for oral Vidaza and responding well. Dr. Jabbour actually said i am in complete remission but i know this can change at any time. I also have two 10 out of 10 bone marrow matches but am not ready for this step yet. I meet with the stem cell doctor next month after I see Dr. Jabbour. Dr. Jabbour also said I am not ready for a bone marrow transplant but everything will be in order and ready when/if I need one. I haven't posted in a while because it's just been "same ole" for the past few months. We did have a wonderful time in Ireland and will be going to Vegas the 20th of this month. We live to travel and will do as much as we can, while we can. My prayers are for all of you as we are all in this same boat but deal with different issues. My blood count was 8.3 yesterday, so after I finish my weekly chemo, I will get a transfusion to get me pumped up for Vegas. I am having transfusions about ever 2 1/2 to 3 months. I hope everyone had a Very Merry Christmas and Happy New Year.