Saturday, January 31, 2009
Day "75"
Today is the 3/4 mark of our 100 day transplant stay! That means that in approximately 25 days, this attractive kid will be back in St. George! Sadly enough, he is almost that skinny again! I'll try to fatten him up in the next couple of weeks!
Thursday, January 29, 2009
Day "73"
Today, Jeff did the most NORMAL thing he has done in 73+ days...he went to see a movie at a movie theater! While for most of you it would not be a big deal, it was HUGE for Jeff! He had literally laid in bed for most of the day, not feeling well at all. Then, around 5 p.m., he decided that he needed to get up and move his muscles. Joel happened to be in SLC for work, so we met him at a theater and watched Valkyrie. Jeff has wanted to see it since it first hit the theaters, but that was when he was stuck in the hospital with almost no blood cells in his body and no release date in sight! :) On the way home, Jeff reported that he felt better than he had felt all day long...it is amazing what a change of atmosphere can do!
Monday, January 26, 2009
Day "70"
Hooray! Today Jeff had a clinic visit, and all of his counts are on the rise! So many platelets and red blood cells were wasted for so long, and now his body has begun to collect them! It is an absolute miracle that his bladder still appears to be healing. Every once in a while (and mostly after vomiting) he has a tinge of blood in his urine, but it is night and day difference from before. This is the first time after being discharged from the hospital that both Jeff and I feel comfortable being at home. He is able to rest peacefully here...no vitals, no nurses in and out, no blood clots, etc!
The worst news of the day came after my sister took our little boy to the doctor this morning. Over the weekend, he developed a rash on most parts of his body. This was a real bummer because our kids were supposed to be coming back up here with us tomorrow! :( He has a viral infection with tiny ulcers in his throat. It will be interesting to see if Kaitlyn (and the rest of Shannon's kids) get infected. A viral infection is the last thing Jeff needs right now, so our reunion will be postponed until at least the weekend.
The worst news of the day came after my sister took our little boy to the doctor this morning. Over the weekend, he developed a rash on most parts of his body. This was a real bummer because our kids were supposed to be coming back up here with us tomorrow! :( He has a viral infection with tiny ulcers in his throat. It will be interesting to see if Kaitlyn (and the rest of Shannon's kids) get infected. A viral infection is the last thing Jeff needs right now, so our reunion will be postponed until at least the weekend.
Friday, January 23, 2009
Day "67"
He's out...and hopefully this time for good! I would really enjoy spending the last 1/3 of our "winter holiday" at this condo in Park City! I have already told Jeff that if he is readmitted into the hospital again, I might have to solicit caretakers...I am not sure I can do that anymore, and I am sure Jeff feels the same way! I am just teasing. We will do what we have to do, but I do hope that he has been through the last of his BMT trials. As of now, I believe I will only post on the days that Jeff goes to clinic (two or three times a week) because things should mellow out and there won't be as much to report. Thanks for all your support , prayers, and warm wishes! We know that we have been blessed because of you.
Thursday, January 22, 2009
Day "66"
Well...Jeff is still here in good old room 509 of the BMT Unit, but not because things got worse! He is in the same condition, but the urologist wanted to keep him for observation one more night for a trial run. She was in the OR during his cystoscopy, and she gave us a really good description of what his bladder looked like. She could not believe the drastic improvement. She said his bladder was so fragile that it could begin bleeding again at any time...thus the recommendation to stay another night. They took him off of all IV fluids and it is up to him to hydrate himself enough that urine doesn't sit in his bladder long enough to form clots if it were to bleed. If things look good in the morning, we really should be going back to the condo in Park City.
Wednesday, January 21, 2009
Day "65"
Bright and early this morning, the urology team came in, turned on the lights, and pronounced that Jeff's urine bag was completely clear! They insisted that it wasn't even blood tinged. I questioned, and they again said that it wasn't. Then, they SHOCKED Jeff by telling him they wanted the catheter to come out. Jeff has kind of become attached to the thing! :) They felt like it would only irritate his "angry, inflamed" mucosa in his bladder...so out it came! I wouldn't say he isn't bleeding at all, but I can say he hasn't formed any clots today! If things stay the same, they plan to discharge him tomorrow afternoon. Big change from yesterday morning...ya?
Tuesday, January 20, 2009
Day "64"
Believe it or not, I am looking at a yellow urine bag tonight--again I'll save you from the picture! Jeff just had a cystoscopy, and the doctors were able to cauterize four big bleeders. However, before they could do that, they spent ten minutes evacuating blood clots from his bladder. They said that there were other parts of the bladder which were "angry", inflamed, and on the verge, but for the time being, they were not bleeding. They found that Jeff did not have a reflex from the bladder back up into the kidneys, so that opened up more treatment options if his bladder does begin to bleed again! The main urologist warned us (Jay, Jackie, and I) that hemorrhagic cystitis was very stubborn and it could begin to bleed again at anytime. It is my hope that I can report again tomorrow that it is still yellow! Good night!
Day "63"
Sorry about the delayed post! Last night just got away from me! Jeff bled about the same amount and so it was confirmed that he would be scoped on day 64 (today)! I will post the results later tonight. Late last night, Jeff's cousins (Brandt, Clinton, and Ben) came over and gave Jeff a wonderful Priesthood Blessing. It was fun to listen to them reminisce about the "Deer Hunts of Old!"
Also, yesterday, some Andrus Family friends, Preston and Shaun Steel, stopped by! Shaun worked with all of Jeff's sisters at the Pizza Factory, and Preston was Jeff's roommate at BYU! They are great guys...made Jeff smile while they were here. The best was when they began recounting the story of Jeff and Preston attempting to "finish" Shaun's basement in college. Let's just say I had to assure Shaun that Jeff had gained some serious construction skills since then! :) Shaun and Preston run a business here in SLC called Valcom (www.slcval.com). It is a leading IT provider for the Rocky Mountain Region. Shaun decided after seeing how many hits Jeff's blog gets each day that it might be a good "free" way of advertising! So...they gave Jeff a really nice Nike jacket with their company logo on it--hoping I might post a picture. This picture is for you, Shaun! :) I guess my only question is...If anyone is referred to you as a result of this blog, do I get some sort of commission? I am just teasing...thanks for the visit and the jackets. :)
Also, yesterday, some Andrus Family friends, Preston and Shaun Steel, stopped by! Shaun worked with all of Jeff's sisters at the Pizza Factory, and Preston was Jeff's roommate at BYU! They are great guys...made Jeff smile while they were here. The best was when they began recounting the story of Jeff and Preston attempting to "finish" Shaun's basement in college. Let's just say I had to assure Shaun that Jeff had gained some serious construction skills since then! :) Shaun and Preston run a business here in SLC called Valcom (www.slcval.com). It is a leading IT provider for the Rocky Mountain Region. Shaun decided after seeing how many hits Jeff's blog gets each day that it might be a good "free" way of advertising! So...they gave Jeff a really nice Nike jacket with their company logo on it--hoping I might post a picture. This picture is for you, Shaun! :) I guess my only question is...If anyone is referred to you as a result of this blog, do I get some sort of commission? I am just teasing...thanks for the visit and the jackets. :)
Sunday, January 18, 2009
Day "62"
Well, Jeff made it ten days without a blood transfusion, and that was a great mile stone in his BMT road. However, today he had to have two units of blood. His hemoglobin has been slowly dropping for the last week, but yesterday he bled a little more than usual. On a positive note, his platelets bumped up another point. Jeff asks for his CBC results first thing EVERY morning. He likes to know what has dropped, what has increased, and if he has to have a transfusion or not at the crack of dawn so he can plan for the day! We have not seen any improvement since starting estrogen yesterday, but we are trying to wait patiently! :) If he is still bleeding tomorrow night, the urologist plans to scope him on Tuesday morning.
Saturday, January 17, 2009
Day "61"
Well, they started that new medication I was talking about today. That medication is estrogen. Yes, I said estrogen. My husband is taking estrogen. But don't worry, Joel has already sent him an email of the Seinfeld episode about the "Manssiere" (bra for men) and the doctor offered him a subscription to Ladies Home Journal! So he has already endured a fair amount of teasing! :)
Seriously, I guess they give estrogen intravenously to women who are hemorrhaging after child birth. So, they are using the estrogen to constrict the blood vessels in Jeff's bladder and stop the bleeding. I spent the entire morning researching this therapy on the Internet, and the studies seem to show that it works 80% to 90% of the time, and their are NO feminine side effects in men. The biggest concern is blood clots, but that is when estrogen is taken for a long period of time and worse for smokers! Jeff will be on the estrogen for less than 3 weeks, and he has never smoked a day in his life! Plus, he has very little platelets, so clotting really shouldn't be an issue. Speaking of platelets...Jeff is officially producing his own! Today, for the first time since transplant, his platelets increased on their own...no transfusion involved!
Seriously, I guess they give estrogen intravenously to women who are hemorrhaging after child birth. So, they are using the estrogen to constrict the blood vessels in Jeff's bladder and stop the bleeding. I spent the entire morning researching this therapy on the Internet, and the studies seem to show that it works 80% to 90% of the time, and their are NO feminine side effects in men. The biggest concern is blood clots, but that is when estrogen is taken for a long period of time and worse for smokers! Jeff will be on the estrogen for less than 3 weeks, and he has never smoked a day in his life! Plus, he has very little platelets, so clotting really shouldn't be an issue. Speaking of platelets...Jeff is officially producing his own! Today, for the first time since transplant, his platelets increased on their own...no transfusion involved!
Friday, January 16, 2009
Day "60"
Our nurse today insisted that Jeff's bladder irrigation was running to quickly, and she was probably right! However, now that they have turned it down, he has struggled with clots more. They are thinking about adding an additional medication tomorrow...we will see.
Thursday, January 15, 2009
Day "59"
I have had quite a few emails, phone calls, and cards lately asking about Jeff, and wondering how I am "really" doing! In fact, last week the BMT social worker basically told me I looked terrible and asked me what I was doing to take care of myself. The next day, after "exercising," I went up to the condo in Park City and brought ALL of my scrapbooking stuff back to the hospital! Yes, it takes up one side of the room, but it sure keeps my hands busy and I have a better attitude because of it. Plus, I took the afternoon off today! I left around 3 p.m. stopped at my Grandma's house, went to dinner with my parents, got my hair cut, stopped at my brothers house, picked up my car which my dad just got back from the mechanic (it had a leak in the gas intake valve that was putting off fumes in my car), and went to a scrapbooking store in Nephi. It was while I was in the scrapbook store that I found my new motto on the wall: Scrapbooking is Cheaper than Therapy! So that is just what I will continue to do to keep myself out of the loony bin! Really though, I am holding up quite well! I try to leave Jeff's hospital room each day to take a breather. Sometimes it is for 3 or 4 hours, and sometimes it is 20 minutes, but I leave each day. I miss my children more than anything right now, but I appreciate the fact that I am not trying to juggle being a mother and a caretaker at the same time. Plus, Jeff truly makes me feel appreciated EVERY day (it is a dang good thing he got married before this all came to pass)! So "really," I am doing okay! :) As for Jeff, he felt like he had less clots today, and he still hasn't had a blood or platelet transfusion lately. That is DEFINITELY progress!
Wednesday, January 14, 2009
Day "58"
As Jeff and I have contemplated the day, we have decided that the only thing worthy of blogging is a visit from Uncle Jim and Aunt Mary (who had come up for the Draper Temple dedication) and Jeff's brother Joel (who is working at his South Jordan office). The rest is so monotonous that it hurts--catheter flushing, changing bed sheets, medications, sleeping, ESPN, watching blood levels, eating, watching urine bag fill up, changing irrigation bags, and spending "quality time together!"
Day "57"
Sorry about not posting last night! Jeff and I were so entertained by the first night of American Idol Season 8, that I went to bed laughing and totally forgot to post! It was a great way to waste two hours! :) As for Jeff's condition, he actually passed more nasty clots that usual yesterday. We haven't got his blood results from his morning draw, but I would guess that his hemoglobin dropped. I am posting some pictures of his morning meds (because they just brought them in), and keep in mind that he will be getting a "bucket" of pills three more times today...some not as full as others! Let's just say he is growing a little tired of taking them--the nurses have to nag him until he gets them all down!
Monday, January 12, 2009
Day "56"
I just got off the phone with Jeff's mother, and I have realized that now, more than ever, Jeff and his father have a lot in common--a deep love for morphine and phenergan as well as a hospital room. This morning, Jay had a partial knee replacement (hence the morphine and phenergan), and the doctors are requiring him to spend the night at DRMC to make sure everything is going as planned. Jackie said the drugs have put him out like a light! Hum...that sounds so much like someone else I know! We wish him a good and speedy recovery.
As far as Jeff's hemorrhagic cystitis is concerned, he is still bleeding. The doctors have decided to continue the prostiglandin treatment for now...the fact that his hemoglobin held again today gives them hope that something is working. It has been four days since he has had a red blood cell or platelet transfusion--that is a miracle in and of itself. We will see what tomorrow brings.
I went to my sister's house to shower and eat dinner with her family tonight! They sent me back to the hospital with some yummy chicken noodle soup for Jeff as well as this picture below! When I gave it to Jeff, he said, "Oh...did Ashlyn draw that?" That is when I had to admit to him that it was indeed MY SISTER that drew the picture--Ashlyn just added the dots on her face. It's drawings like this are are priceless and will definitely help Jeff get better soon...Thanks SUZANNE for helping the cause! :)
As far as Jeff's hemorrhagic cystitis is concerned, he is still bleeding. The doctors have decided to continue the prostiglandin treatment for now...the fact that his hemoglobin held again today gives them hope that something is working. It has been four days since he has had a red blood cell or platelet transfusion--that is a miracle in and of itself. We will see what tomorrow brings.
I went to my sister's house to shower and eat dinner with her family tonight! They sent me back to the hospital with some yummy chicken noodle soup for Jeff as well as this picture below! When I gave it to Jeff, he said, "Oh...did Ashlyn draw that?" That is when I had to admit to him that it was indeed MY SISTER that drew the picture--Ashlyn just added the dots on her face. It's drawings like this are are priceless and will definitely help Jeff get better soon...Thanks SUZANNE for helping the cause! :)
Sunday, January 11, 2009
Day "55"
Jeff's hemoglobin level and hematocrit did not drop very much today, so the doctors believe he is bleeding less! I guess when they say it is looking better to them, they are not just looking at the urine bag! :) They are looking at Jeff's total chemistry...and they are using their "trained eyes"--at least that is what one of the Urologists told me today!
Saturday, January 10, 2009
Day "54"
Yesterday, for about thirty minutes, Jeff's urine was a nice yellow color...I have never been so excited looking at a urine bag in my entire life! However, it quickly turned to the old familiar red color. Today, when the urologists stopped by for their daily visit, they were excited and said it was looking better! I, on the other hand, had to bite my lip before I said a smart remark about the fact that it looked worse to me! Maybe it has something to do with the fact that I have been staring at the dang bag for five days now and praying for yellow--anything less is simply "worse" in my eyes! If his bladder is still bleeding on Monday, they are going to switch the medications he is receiving during bladder irrigation. Meanwhile, I will work on my bad attitude toward his hurdle in Jeff's VERY SUCCESSFUL BONE MARROW TRANSPLANT! I need to focus more on that!
Friday, January 9, 2009
Day "53"
As some of you may know...Jeff has some issues with the U of U hospital food from the cafeteria. I am sure it stems from the constant nausea and vomiting. :( For the last several weeks of his initial hospital stay, he would only eat from the BMT galley or TV dinners. Then on the next hospital stay, he only ate from the galley...NO TV DINNERS. Now, Jeff is no longer considered nutripenic (his blood counts are above a certain level), so he can eat outside food. It is good for him, but bad on the pocket book! Funny thing is that he will eat from the cafeterias at Huntsman and Primary Children's (both a good walk from here), but he will not even look at the menus from downstairs-- which is included in the "price" of this room! I tease him that he is pretty high maintenance, but he always comes back to the same statement..."If I am going to sit in this bed all day, I am at least going to eat good!" And "eat good" is exactly what he is doing!
Thursday, January 8, 2009
Day "52"
So what does a man do when he has to sit in a bed hooked up to a catheter? Watch football, surf the Internet, watch the BCS Bowl game, complete word finds, watch football, think of all the places he loves to eat, watch football, write down a list of all the things that could have or have gone wrong in this transplant, and watch more football! Then, when his bladder is clamped off for two hours during treatment, he moves to different positions over and over again so the medication touches every part of his bladder...while being completely uncomfortable. Fun stuff...huh? We switched rooms last night, so he has a nice little flat screen tv with decent sound instead of the regular "tin can" hospital kind with speakers right at your head--you all know what I am talking about! :) So that makes the football games more enjoyable.
Wednesday, January 7, 2009
Day "51"
As of this moment, Jeff is receiving his fourth unit of blood today. His hemoglobin level dropped drastically yesterday, and they are still playing catch up. When we asked the doctor how long she thought we would be here, she mentioned that the study they are basing this new treatment on usually runs about seven days...we were just expecting a few. SO...our kids went home to St. George with Grandma and Grandpa Andrus so I could be here to cheer Jeff on as his bladder is clamped off for two hours at a time! :)
Tuesday, January 6, 2009
Day "50"...the HALF WAY MARK!
Today we are 50 days post transplant, which means we are half way through our Northern Utah "Winter Holiday!" We decided to celebrate this occasion by heading back the the BMT Unit for another (hopefully short) hospital stay! :( Last night, Jeff passed a huge amount of blood, and almost passed out a couple of times. So, as we discussed the bleeding issues with some of the doctors today at clinic, and showed them a picture I took of one of the clots (which I will refrain from posting) they decided to readmit him to the unit and try a different treatment. It will consist of pumping a certain medication (can't remember the name) into his bladder through a catheter, clamping it off for two hours, and then irrigating the bladder for four hours. This will be repeated over and over again until his urine is fairly clear for 48 hours! It was a BMT Doctors' idea. The urologist had never done it before, but he was willing to try. In one study, it completely healed the bladder of 50% of the patients. Wish Jeff luck!
Day "49"
Today Jeff had enough energy to play games and color with Kaitlyn on the floor...it didn't last to long, but it was priceless! I thought he would sleep all day since we had some bad IV pump issues last night. The alarm went off literally every 15 minutes to half hour! After trying every one of the troubleshooting ideas in the booklet, changing all the tubing, calling the on-call home infusion guy, and then changing the IV bag, I finally shut the stupid thing off at 4:30 a.m. and made Jeff drink water every hour until morning! :(
Sunday, January 4, 2009
Day "48"
We are at clinic today, and Jeff is currently receiving two bags of platelets ...yes, his levels are still dropping a little. So, instead of sitting here watching TV, I decided to make this little video Jeff has been asking me to make for a couple weeks now. His parents have spent countless hours with him during this transplant experience. He and I have appreciated their dedication...and I REALLY appreciated the time I was able to slip away from the hospital and SHOWER! Thank you, thank you, thank you!
Day "47"
Today was a bitter yet sweet day. Two nights ago, Jeff's father traveled up to Park City to tell him that his Uncle Blaine had passed away and his funeral was today. Uncle Blaine was only 55 years old, and no one had expected it. Jeff was overwhelmed with memories from his childhood of Uncle Blaine...most of them dealing with the deer hunt. He was determined to at least attend the viewing today. After a long night, it was hard to get Jeff up and going...so it was very apparent that we would not make the viewing. So, he decided to attend the funeral. As we drove up to the chapel, all of Jeff's brothers were waiting to help him. When we walked through the doors, we found that Aunt Lynette had been waiting for Jeff before they had the family prayer and closed the casket. It meant so much to Jeff AND his father. We stayed for the funeral ...sat at the back, mask on face, and hands in his pockets... and we were able to sneak out during the closing song. The funeral was a great tribute to Blaine's life, he was an amazing man. It was good for Jeff to get dressed up and go somewhere. It doesn't happen very often.
Day "46"
We are still sitting "tight," and Jeff is still passing obnoxiously huge blood clots. We came to the clinic today for blood work and a doctor visit. Jeff's white blood count and ANC plummeted down in the ones today. They believe it is just the immuno-suppressive drugs doing their job, but it sure puts him more at risk for infection. While we were at clinic, we insisted a urologist consult about the bladder. The BMT doctor we were visiting consulted with the urologist on call and several other people, and they again came to the same conclusion...relax and drink a lot of water! It makes me wonder if they have ever relaxed and drank a lot of water while urinating out golf ball sized clots of blood through their urethra!?! Sorry...I will end this post for now!
Day "45"
Happy New Year! Surprisingly enough, Jeff was awake for the final countdown of 2008! We hope 2009 brings health and happiness to all of you! It may not be a surprise, but Jeff is passing clots again. I'm sure that we ruined the New Year's Eve party the urology Dr. on call was at when we paged him and asked him a good 20 questions! Basically, we were told to have Jeff sit tight, drink a lot of water, and relax. He basically said that unless he absolutely can not urinate, there was no need to come back in and be irrigated. So we will try to do just that.
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