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May. 2nd, 2008

Oh Noes!

fullygoldy

Not Again!

Yesterday morning, Barleypop was admitted to the hospital again. :(  I think it's been about 13 mos since his last stay.

He's either got a severe intestinal virus or a severe intestinal bacterial infection.  The blood cultures will tell us what's what, but they're still incubating.  He spent two excruciating days fighting it at home, but it was very obvious that he wasn't going to beat this without the help of IV fluids and meds. He hasn't eaten anything solid since Monday, and what little liquid he's managed to get down has pretty much boomeranged.

The only good parts are:

+He lost most of the water-weight brought on by the lymphedema, albeit in an alarmingly short time, and now has actual ankles and calves. (~10 lbs in ~half a day)  

+He gets to see most of the nurses that he loved so much from the initial stay.  A couple have moved on to new phases of their lives, but there were several familiar faces yesterday, and he was happy to see them all even though he was feeling miserable.

Unfortunately, they switched him off of morphine to some other narcotic, because they didn't like the way morphine makes him retch right after he gets it.  I say unfortunately, because the new drug made the retching and nausea even worse, and didn't do as fast or complete a job on the pain as the morphine.  They're going to revisit his eye pain while he's there too since the Restasis doesn't seem to be helping much.  And they're going to look into pain management strategies if he's still having pain after this is cleared up.

He's got his computer, so we may hear from him if he's feeling better this morning.  We'll definitely hear from him as soon as he does feel better though - not much else to do in a hospital room with a view of a different wing. B6/644 this time - it's roomier than the last 2 rooms, but the view from the bed is nothing but building.  We watched Survivor  and CSI last night in the dark, and then visiting hours were over.
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Jan. 20th, 2008

Big Dog

barley52

Ye-loww

 Yup, still here lurking about. for the past two weeks things have been very much the roller coaster ride. I went with  fullygoldyto Milwaukee for three days and while she attended her meetings and required dinners and such, I lavished around the Phister Hotel. What a grand place this is and if the walls would just talk I am sure there would be stories of Beer Barons, businessmen, and romantic meetings of all sorts of the " upper crust" . 

For the first time in 2, yes Two years I totally immersed mySelf in water, I had the hotel pool ( the one on the twenty third floor ) all to mySelf for about two hours one afternoon. It was quite the experience to be in a bath water warm pool, looking out over the city from such a fine vantage point. Later the same afternoon I spent some time in the day spa getting a massage, a nice steam bath and a shower of grand style. This shower was amazing, it had a rain fixture overhead which totally drenched you in water while jets from all sides attacked the body with stream of water. each and every jet, 8 total and the overhead, were completly independent of each other so temps and pressure were toally adjustable for each one. I spent a good 30 -40 min just allowing mySelf total relaxiation. It was a wonderful trip and I am sure this is what gave me the endurance to get through the past week. 

Daily pain continues and it is always something different,generally 3 or 4 things to contend with, and it is getting harder and harder to maintain good mental health. When I feel bad everything is bad, I am angry at so many things and when I am down physically I am unable to shake the disparaging attitude. I sometimes have to take mySelf away from anyone else around me just so I do not unleash all the gunk onto them. Family is also learning the signs and they tend to stay away from me during these times .This tends to become a double edged sword needing support and comfort but unable to be civil enough to allow it. 

Yesterday however was such a wonderful day. It started out very badly , lots of hurting and discomfort, bad mood, dangerious thoughts . I had to return to bed mid morning go back to sleep and start over again. Later in the afternoon the family gathered together for hanging out by the fireplace and playing dominoes. Much laughter, comfortable cozy setting and some good food . After Rupert beat us all in Dominoes ( still dont know how he managed that ) we all watched Pirates of the Caribeian (??) Worlds End and laughed some more. I had such a wonderful time with those which I love the most that I totally forgot about how difficult the morning was. WOW thats powerful !!!!! 

I am looking forward to gathering with friends later today for a Packer Party. Hopefully the badies will stay away and I can enjoy mySelf and the company of friends. 

Jan. 17th, 2008

sackrace

bzdchris

A funny joke!

 Maxine was driving down the street in a sweat because she had an important meeting and couldn't find a parking place.  Looking toward heaven, she said, "Lord, take pity on me.  If you find me a parking place I will go to church every Sunday for the rest of my life and give up sex and tequila."

Miraculously, a parking place appeared.  Looking up again she said, "Never mind; I found one." 

Nov. 23rd, 2007

Snowman

fullygoldy

Because I couldn't resist

Dear Santa...

Dear Santa,

This year I've been busy!

Last Friday I ruled Iran as a kind and benevolent dictator (700 points). In September I stole kitnish's purse (-30 points). In August I pulled cfxjosh's hair (-5 points). In June I saved a busload of nuns in Angola (326 points). Last month I helped old_man_summer across the street (6 points).

Overall, I've been nice (997 points). For Christmas I deserve a Nintendo Wii!

Sincerely,
barley52

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Nov. 5th, 2007

fall peace

barley52

another post

  Ok fine, I just lost my whole big post and explination about last weeks events but LJ did not like it so its gone, bye bye! so much to your benifit you geth the abbridged version. Long week, fullygoldycame home on Tues and did a very good job of keeping everything very low and easy going for the upcoming day of testing. Visitors and phone calls keps me pleasently surprised all week . thursday came and I was in a calm peaceful space and while it was a long and eventful day, it all went well. Apparently this time in my Bone marrow Biopsy, I botched and grumbled and complained the whole time, even though I was really not there. I got enough of the memory forget drugs to forget that evening and a good part of the next day ! Fullygoldy broke out her new toy and that table saw made a quick job of finishing out the panneling in the kitchen. Wow what a difference, sucha finished and quality lok the kitchen has now. French counrty says it rather well. Dinner Sat night with bzdchrisand busman1994, S and T was wonderful, great friends, really good people, and good food too. Thanks gals-n-guys
So there ya go, no cuts and I am not going to spell check this one as I just spent 20 min cheling that lost one..pfffttt! Visitors and callers are most welcome, you are most especially appreciated and good peeps as well,  especially dancers, I have really enjoyed my Monday lunches and brunches with roguebitch, thanks sweetie. You are all special people, and I did not even mention all of you, but you know your there and so do I :)
Peace Ya'll

Oct. 5th, 2007

Autum road

barley52

day 362 of the long road

Thursday's Dr. appointment marked ( close enough) my one year since transplant. In addition to my normal lab work, I also had a pulmonary functions test. This was done in conjunction with my 6 months since going on prednisone for pnumonia. I have had a nagging cough and Dr.L wanted to determine if I would benifit from the use of an inhaler. Well the test went fine and my lungs are in better shape now then they were so thats all good.

With a clean bill of health on my lungs Dr. L changed his approach to my coughing problem as well as putting that together with how hard it has been to eat lately. It seems my food gets stuck on its way to my stomach and causes great pain. It seems that my esophagus has srunk, due to my glands not secreting properly, and thus is restricting almost anything including normal sinus drainage...yuck huh? So the plan now is to have a endoscope of my esophagus that will streach things back out . According to other patients who have had this done the end result and relief is well worth it. I will have those wonderful "twlight drugs" which I like, but to get them I will have to have an IV and that I do not like at all. I have no place left to stick, well no place that would normally be used and even thinking of alternative veins squicks me badly.

I started Physical Therapy this week as well. Just the initial assesment, where the PT tested my strength by simple resistance, wore me out and I am still sore, although not as bad as I thought I would be. I am familiar with this process and how slow and consistant it has to be. My rebuilt shoulder has exceptional range of motion due to having really good PT's and doing the work necessary . Hopefully this experience will allow me to get into this part of recovery and maybe settle down a bit on the roller coaster effect.

All in all it has been quite a first year for my new female assesories. While there is a bit of a rub between what is me and what is becoming me there always seems to be that bit of "healthy" agitation between male and female. I know things could be a lot worse and after talking to two BMT survivors in the waiting room yesterday, I know things will get better.
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Sep. 26th, 2007

pitching

barley52

(no subject)

Several people have commented to me lately that I have not posted here as often as I had been and were wondering how things were going. Well OK, I guess I tend to not post as much when things get a bit tough. For me, postings like that just erode away at my positive and determined direction so I keep things to myself. 




     
I think about my friends 
oakwind
and
wayfinder
 , I know they are going through much of this as well, I empathize with you both and hope that with our combined strengths and support we will all be beyond this by this time next year.
  
For my DW who has been so understanding and taken such good care of me and our family 143 more then ever, thank you.

Aug. 9th, 2007

Willendorf Butt

fullygoldy

Well, Dang.

barley52 had his latest checkup on Tuesday, and he's back on the Tacrolimus, in addition to the Sirolimus, in an effort to pull him off the Prednisone sooner.  

The bad part of that is he's not allowed to drink alcohol while on Tacrolimus - since both tax the liver.  In the short term, this means that this Saturday's annual trip to the Great Taste of the Midwest will be seriously dampened for B.  Imagine being surrounded by hundreds of yummy yummy beers and not being able to partake!  OH NOES!!  So if you're at the "Day of Public Drunkenness"  look for us sitting under the trees on the "ugliest blanket ever" (60s Orange floral thing) with bzdchrisand busman1994.  I suspect we'll all be spending more time than usual on the blanket instead of in the beer lines.

The good news:  Dr. Longo remains very upbeat and positive about B's health.  Even with the GVH setback, he's still healthier than any of the other BMT patients from his time period.  Dr. L says, "You're not going to die from this.  You will get better.  It won't always be this way."  He attributes his medical opinion to his skill, expertise, and cutting edge use of the Tacrolimus/Sirolimus combo.  He doesn't always come out and say this with as much fervor and conviction, but it's the message he's been giving us since diagnosis in Feb, 2006, and he always seems to know when we need reinforcement.

Also good:  B's platelet counts are high and stable enough that he can now use any over-the-counter pain reliever he chooses.  Woot!

Special message to aenodia, oakwindlegogeekgeezer and wayfinder38 - stay positive.  We think of you every day, and are looking forward to being together again.

Jul. 27th, 2007

smoltz

barley52

slowly I turn...

It's been a long and boring three weeks. The GvH continues to be an irritation and because of the flair-ups I have had to remain on a high dosage of prednisone. It has begun to really take its toll on my legs and torso. Extended usage of this drug will begin to " melt" large muscles so my legs get very week and even standing on them for 10 min or so produces rather noticable tremors. Also being back on Serolimus I have to be careful about how much sun I get so most of the day I sit inside, working on a project 15 min or so and then sitting and resting for 20-30 min. By the end of the day (6:00) I am totally wiped out and can barely hold my head up. It does not help that I only sleep 2-3 hrs at a time at night having to get up for one thing or another. Yesterday things may have finally taken a turn, I felt a bit better and the GvH seemed to have calmed down a bit. I had enough energy to even take a walk around the block late in the evening with fullygoldy. Someday this will all be the past, but I really need to stop looking for that day to be tommorrow, it's just not going to happen that soon. Thank you all who have visited, it helps to have company to break the boredom. Thank you for all your thoughts,prayers and concentration of your healing energies. Goldy, thank you for being there for me.

Jul. 9th, 2007

Beer Run

barley52

No more beer !

Today will most likely be the last day that I will be able to have a nice refreshing beer. The Dr. had allowed me 1 or 2 a week once he took me off my immune suppressants but the in the past three weeks GVHD has progressively gotten worse and I am almost sure that Dr. Longo will once again put me back on Tacrolimus. This immune suppressant taxes the liver badly and adding ETOH to that mix for the liver to deal with is not a good thing to do. Now I will be the first to say " ...but my liver has been through rigorous training and has held up very well throughout this whole process" however my Dr. takes no risks what-so-ever and I have followed his instruction from the get go. The good news here, hopefully, is that this will effectively end my use of prednisone which will give me back my legs and should improve my energy level as well. I suppose it is a win-win trade off, not to mention I will shed a few more of the weight I have put back on but I surely will miss my weekly treats. So at the end of your day, when you get home and pour that cool refreshing barley treat, hoist the glass up to me and lets share one last pint for awhile and give positive thought to not having to be on immune suppressants for too long.

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