[ButchL]

Carrie:

Hang in there. If there is anything you need here in Buffalo, you have my number….

Butch

[ButchL]

Carrie:

I always say, everything happens for a reason. It will all work out. You’ll see. Take it as a little vacation to see your family. It will do you good.

Butch…..

[ButchL]

Carrie:

That’s great news! My thoughts are with you….

Butch

[ButchL]

Ellie:

The girls seem to be handling it well. We have lots of family around right now so it isn’t too bad. In the coming weeks it may hit us harder as things calm down.

As for clots, I could tell when they moved by redness, hotness and the pain. Does the pain feel any better at all ?

Butch

[ButchL]

I hope all goes well. You’ve got my prayers. Give me a call when you get here……

Butch

[ButchL]

I unfortunately am the king of clots. I lost count at number 12. I had a DVT in 90 and have been on thinners since then. 7mg. of Coumadin for life.

The danger is breaking off and going into the lungs. That is a pulmonary embolism. I had 2 of those. That is why they have him watch for breathing difficulties.

The body does naturally dissolve clots. I have had several that we just watch and they go away. I would think that being as he has low platelets, it is equivilent to having the blood thinned by meds.

I would bet the doc is counting on them going away naturally. They are painful and what I always watch for is if they go above the knee. That is when I was told I have to really be careful.

I had 2 DVT’s back then and the rest have been surface clots. They don’t think the filter is necessary for me. I think the best is to keep the leg elevated above the heart and try and relax. I know that they confined me to bed when I had the DVT. They do not want it to break off without dissolving.

I hope some of this helps……

[ButchL]

Thank you all for your support. I ma back to work today and trying to get back in the groove. There have been a lot of donations to Roswell Park on Kelly’s behalf so some good has come from this.

I will check back from time to time………

Butch

[ButchL]

She is still with me. Resting comfortably right now. Thanks for all the support. I’ll update later…….

[ButchL]

I appreciate all the feedback. I work for a law firm. I am one of the “computer guys”. Unfortunately, no way to do my job from there. I am now paying a bit more attention to myself. I even visited the doctor yesterday.

Something MDS/GVHD related. As I mentioned earlier, the GVH attacked my wife’s eyes and she just sees shadows. To speed the healing process, the eye specialist made a syrum from my blood. Apparently they can make it from anyone’s blood and it is easiest to ask a family member. I gave 4 vials of blood and he made a 1 month supply. We’ll see how they work in the next few days.

We noticed a mood change last week. She gets very anxious and is a bit nasty. She is usually a sweetheart. (Of course she has the right to be grumpy at this point.) That is also when her liver started worsening as well. One of the nurses realized that that is when they took her off morphine. They have put her back on a low dose of morphine again and her demeanor has gone back to normal.

I asked the doc if the morphine could have a positive effect on the liver. He said there may be a correlation and we will have to wait and see.

On another note, my 14 year old step daughter wrote an email all on her own to the local radio station pleading for help. I hope you will indulge me to post it here. She is an amazing girl.

hello my name is casey XXXXXXX and i was just wondering if i could just take a minute of your time to ask a favor of you guys. my mom is very
sick in the hospital with a disease that is alot like the type of cancer luekemia. she has a 20%-40% chance of living and we have alot of bills to
pay in result in being in roswell in buffalo for so long. this is when i emailed kiss 98.5 and told them my story and idea to ask what they could do to help me. in case they didnt respond back to me, i wanted to email you the same story. seeing that i am only 14 and i cant take matters into my own hands by myself, i am going to try and get someone to help me fufill my dream
of helping my mom. since in my opinion i am a pretty good singer i wanted to think of an idea for a fundraiser that involved singing and helping out a good cause at the same time since singing now a days is the only thing that makes me want to get up out of bed everyday. so i was thinking hard and harder when suddenly i thought of the idea of getting a hold of a recording studio and asking if we could put our heads together and make some cd’s and sell them in benefit for my mom. i have done my research and i know that this can be a very long and expensive process and that is why i am giving you my word that after i sell a bunch of cd’s i would do my best and try my hardest to pay back your studio. so if you dont have the time/ money or whatever and cant help me that is totally fine and i totally understand. one thing is if you could please get back to me and at least let me know that you were thinking about me and just cant do it. so either way please write me back and consider helping me be a hero to my mom just like she is being a hero to me right now and staying strong and trying her hardest to stay alive.
thank
you very much,
signed hoping and praying… (casey) p.s. if you need to get a hold for me for any reason, you can call my cell phone at xxx xxxx at anytime after 3:00 since i have school before that.
thank you again

The recording studio called her and said he would help her out. He asked that her step Dad call him. I did so today and he wants to meet her and has some ideas on what to do. He said he can probably get the radio station involved as well. I will try to set something up for this weekend.

This kid is truly amazing.
It touched my heart when she told me what she wanted to do…….

Again…thanks for everything, listening etc…..

Butch

[ButchL]

Quote:

Originally posted by gemloyear:
Butch,You need to take care of your own health, as your wife needs you so much right now.Pericarditis is nothing to mess with, you need your rest.Evidently your company does’nt give emergency leave for family health issues? I’m sorry our wife is having so many problems, have faith that things will get better. She seems like one strong lady. My husband also sleeps more during the day, he has so much fatigue gets up at 3am. and can’t sleep until later in the day. He had pericarditis years ago I remember how painful it was. take care, we’ll be praying for you and your wife. Ellie

Yes, my company does give emergency leave but it is unpaid. We lost my wife’s income so I have to work. I can’t afford to miss a day right now. I’ve used up all my sick and vacation days already.

[ButchL]

We were quoted 1.2 – 1.8 million in total. We do have insurance, in fact I had to add my wife to my policy in addition to hers before they would proceed.

I keep a pile of “patient responsibility” bills which I laugh at once a week. How do they expect a person to pay when they are in the hospital and have had no income since December ?

[ButchL]

UPDATE: Her bilirubin is like the stock market. Up and down from day to day. Last week was trending down all the way to 24 from 42. So far this week, up to 33. The doc says she also has a blood infection and they had to remove her “semi permanent” lines as they had bacteria in them. She now has a “temporary” line. The difference in lines from what I understand is one lasts several months and the other is good for a month or so. She has no strength left and still cannot see. The eye doc says that it will take months before her site is better. Currently she just sees shadows.

Now to top all this off, I woke up at 4am Monday with severe chest pains. After a 911 call, 2 nitro glycerine pills, shot of morphine and an anti-inflamatory shot, I am back to work. Turns out I have peracarditis which is an inflamation of the sack around the heart. Hurts when I breathe. On ibuprofen therapy to stop the inflamation. I am supposed to be resting but I am out of leave so here I am at work trying to keep the machine going and pay the bills.

I think when all this is over, I will need to write a country song about my experiences. Don’t you think ?

[ButchL]

So sorry to hear. You and your family are in my prayers.

Butch

[ButchL]

Quote:

Originally posted by Carrie:
Butch,

Can’t help you much but my dad is being treated at Roswell, too. Dr. Wang is his oncologist. He also gets seen by Dr. Baer. For his lymphoma, his doctor is Czuchman.

Dad’s situation is very different from your wife’s. I hope that she’s doing well.

carrie

Carrie:

My wife started with Dr. Wang until she was handed off to the BMT team. She still keeps an eye on her now and then. She was great with my wife. Your dad is in good hands.

As for my wife, her bilirubin count in her liver is steadily going down. It is currently at 24 and drops a point each day. It was 42 last Thursday. We are on our way down to 1.

She is responding better now but she is getting anxious and paranoid. This happened during the actual transplant as well. She tries to sleep all day when someone is there so that she can stay awake at night when we can’t be there. She is afraid to go to sleep without someone there. I will stay Friday – Sunday night at the hospital. Weeknights are just too hard with trying to work at 8am.

I am hopeful that once her immune system starts producing this time that the GVHD won’t come back as strong. I am also hoping that as the bilirubin goes down and they decrease meds, she will be ok by herself at night. I am on the verge of losing it. Work/sleep/hospital. I just need a day off but will be there as much as I can for her. I’ll have plenty of time once she gets back home………

Thank you all for your thoughts and kind words. I wish you all the best as well!

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