Showing posts with label Ganciclovir. Show all posts
Showing posts with label Ganciclovir. Show all posts

Sunday, May 06, 2007

Day +117


Thursday, Joe and I went back to the hospital for his third round of Cidofovir. If Joe is CMV negative on Monday, then we party! If he is still positive, then there is talk of giving him Ganciclovir and Cidofovir. There is a hope that the two together might effectively take care of the CMV.

Thursday, we knew would be a long day. The whole Cidofovir process takes 6 hours. (Joe also got platelets again, but that was relatively quick.)In the past, we usually went home around 2 or 3 in the afternoon. But last week was the Week of Waiting; we went home at 7pm. Still, we are blessed that Joe is able to go home. (Dear Baby Livi and her mom have been living at the hospital since her transplant two months ago.) Not only that, but we were blessed by a visit from our dear friend Sheena. You might remember that when Joe was admitted to the hospital shortly after being diagnosed, Sheena let me stay at her place many nights so that I wouldn't be as far from the hospital. Sheena started attending our church and fellowship the same time that Joe and I did. In the past four years she has become such a good friend. Unfortunately for us, she is finishing up dental school and leaving Pittsburgh this week. We're going to miss her so much!!!!!! Sheena has such a huge heart, and she is also just about as silly as I am. Actually, she may even be sillier. In any case, she made our long day at the hospital on Thursday feel much shorter. Thanks Sheena!!!!

Since Thursday, we have had a bit of a break from the hospital. Unfortunately, also since Thursday, Joe's rash has become increasingly worse. On Saturday, after a call to the doctor, Joe was put back on Cellcept - the immunosuppresant that was stopped when we first learned Joe's graft had dropped. This whole treatment process is so crazy. Lower the steroids and immunosuppresants and the GVHD starts to flare. Increase the meds and Joe's CMV becomes positive again. Then there is the chemo which initially lowers blood counts that are already low. Crazy.

When Joe starts to scratch he always gets a lecture from me...or a little slap on the wrist. This time around though, he is getting pretty smart. Joe will seemingly vanish into thin air, and the house will become very quiet. Then he will emerge again, looking a bit sheepish and with some patches of especially red skin. Very suspicious...

Our friend Sha invited me to go to the symphony with her on Saturday evening. I almost declined. I'm not with Joe all the time. But I am with him most of the time. Up until last night, all of my excursions were either during the day or they were only a very short distance from home. What can I say? I'm an overprotective wife. But Joe convinced me that he would be fine and that I should get out of the house - not only for my own sanity, but so that nice friends like Sha still love us once Joe is well enough to be out and about! Well, I had a wonderful time with Sha. It was a really fun night of music. Plus, I got to see my Uncle Kao. When I got home in the evening, I reenacted the whole experience for Joe. I'm not sure that the conductor or the musicians would appreciate my impressions, but Joe seemed to get a kick out of it. :)

We go back to the hospital in the morning. I'll keep everyone updated. Speaking of updates, check marrowtrek.org sometime this week. Jim & Jesse should be putting up an update on their progress soon!

~~~~
ANNOUNCEMENT

If you look at our links to the left, you will see that one of the girls in our prayers is named Kailee Wells. She is only ten years old and has already had two bone marrow transplants. Six years ago, her parents had an idea for a "Thanks Mom" bone marrow campaign. Since then they have been able to work with the NMDP to run a national bone marrow drive each year in honor of Mother's day. There are drives being held all over the country with a goal of 20,000 new registrants. You can also register online for free while funding lasts. The event runs from May 7-21. You can learn more here. Please, please, please SPREAD THE WORD!
~~~
Thank you Sha for the lovely card that you sent!!!!

Thank you Indiana Mom & Dad and Monroeville Mom & Dad for visiting us this weekend and bringing food!

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.
~Matthew 18:19-20

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Tuesday, May 01, 2007

Keep up those prayers!!!!!!! (please)

Saturday...
Joe was started on Vidaza once again (a quarter dose like the last round). This was day two of round 2, post-transplant. On weekends the BMT office is closed, so Joe has to go to short stay. All of the nurses in short stay know us very well. It wasn't a very eventful day. For the last round of Vidaza, Joe had a line and thus he took advantage of the fact that Vidaza has been approved for IV administration. This time, since Joe doesn't have a line anymore, he has gone back to getting subcutaneous injections. With the quarter dose it is just one shot...not so bad, says the wife who isn't getting poked!

Sunday...
Joe had his blood drawn. Being a chemotherapy, Vidaza made Joe's counts even lower. Plans were made for a platelet transfusion to take place on Monday.

Monday...
The plan was to go to the BMT office. There we thought we might wait for 15, maybe 20 minutes for Joe to be called back to receive his Vidaza shot which would take a good 5 seconds. Then we would head up to short stay where we would wait about an hour for Joe's platelets. Platelets are fast, so the transfusion would take at most 15 minutes, and then we would be on our way home. We figured everything would take 2 hours...maybe 3 if things were really crazy. This is what we THOUGHT, because after months and months of going to the hospital and being given the opportunity to take full advantage of the WAITING rooms...we still haven't learned our lesson.

What really happened is that we went to the BMT office and waited for two hours before Joe was called back to receive his Vidaza shot which took all of 5 seconds. Then we headed up to short stay where we only had to wait about 15 minutes before Joe was taken to his room. At this point we were told that his platelets would arrive in an hour. Well, an hour came and went with no sign of platelets. Then a lovely nurse came and told us that they were informed that the platelets would arrive in 20 minutes. Apparently they were to arrive with the 2pm driver from the Central Blood Bank. Joe's platelets were not with the 2pm driver. We had to wait for the 3:10-3:15 driver. The 3:10-3:15 driver did not arrive until about 3:40, at which point the hospital people had to process it and such. Joe finally received his platelets at around 4pm. And yes, the transfusion took about 15 minutes. We waited over 5 hours for two procedures that took a total of 15 minutes and 5 seconds. The positive thing is that I was able to do plenty of reading and crocheting, and Joe was able to do plenty of reading and napping. The Benadryl that Joe was given before his transfusion did a great job of making him drowsy. The other positive thing is that Joe didn't have any reactions to his transfusion.

Today...
Today Joe had another blood draw. Everything was low again, which was expected. We also met with the doctor. Joe is going to be getting Vidaza each month again as a sort of maintenance. This sounds like a good idea right now. The not so great news is that after two negatives, Joe's Sunday blood draw showed that he is CMV is positive once again. That darn CMV loves to pop up and cause trouble all the time! Joe was already due for another dose of Cidofovir on Thursday. That will go as planned. Hopefully that will work to make that pesky CMV negative once again. If not then Joe might have to begin a combined therapy of Ganciclovir and Cidofovir.

The other thing is that Joe's rash started to flare up again. It is not too bad yet, but everyone would like it to stay "not too bad yet." So Joe's steroids were increased yet again. Not too high, but it already seems to be helping.

We are still smiling. In fact, on Monday one of the nurses said, "I think the two of you look happier every time I see you." Today, Joe's doctor said, "The two of you are always so positive." He thinks that all of this positivity has helped Joe to not look or feel as bad as many patients would during the "downs" of all the "ups and downs" Joe has been through. I think that it's true. One of the big things Joe and I have learned during this journey is that there is no point in worrying before you have to worry. And actually, with each "down" we experience, we are learning that there really is no sense in worrying then either. Worrying makes you feel miserable, it causes you to lose sleep, it gives you wrinkles, and in the end none of your problems are solved. Being positive makes you happy, allows for plenty of beauty rest, makes a better impact on others, and allows you to enjoy life despite all odds. :)

Thank you everyone for all of your prayers and all of the positive energy you've directed our way. Knowing we have so much love and support really helps us to continue to stay postiive.

Who of you by worrying can add a single hour to his life?
~Matthew 6:27
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Wednesday, April 11, 2007

The evil temptress is back...

Today we learned that the evil temptress Ms. CMV is back. We were prepared to see her again, but we were really hoping she would stay away. Oh well, as the doctor said, "don't be discouraged. This is treatable." Since Mr. Ganciclovir proved ineffective last time, and Mr. Foscarnet made Joe pay heftily to get rid of Ms. CMV, Mr. Cidofovir is intervening this time. I like to call him Mr. Sudokuvir...but anyway...

We will go to the hospital tomorrow. Joe will receive fluids for three hours. Cidofovir will be infused over 2 hours. Then there will be an additional two hours of something, but we're not so clear on what yet. :) I will have to report back! Cidofovir only needs to be given once a week, and apparently the very first treatment is much longer than the ones that follow. So tomorrow is a long day, but next Thursday should be a bit better. So far the plan is two Thursdays of Cidofovir, then a week off, and another Thursday of Cidofovir. Hopefully by then Joe will test negative for CMV. If not, he'll continue to get Cidofovir every other week.

Today Joe tried something new. It's called Mepron. It looks like bright yellow paint, or maybe French's classic yellow mustard. Apparently it tastes like fruity plastic. It is used to prevent pneumonia. Originally Joe was given Bactrim when his counts started to rise post-transplant. When Joe's counts started to drop, he was taken off the Bactrim and given a Pentamidine, which is inhaled. The Pentamidine is a monthly treatment. Unfortunately, it was discovered that those in the hospital responsible for administering Pentamidine weren't exactly doing it correctly. This understandably made Joe's doctor nervous. So Joe was given a prescription for Mepron. You have to take it once daily, and it is much worse than swallowing pills. Joe is convinced the doctors enjoy coming up with new ways to torture him! However, the upside is that the drug comes with these directions: TAKE THIS MEDICINE WITH MEALS. If possible, include foods with a high fat content (whole milk, cheese, ice cream, eggs, fried foods). Joe is especially happy to have a proper excuse to eat ice cream!

Some more good news. Joe's rash looks significantly better today, and he isn't shedding as much skin either. I'm praying he is able to get a good night sleep, since tomorrow will be along day. Joe's parents kindly brought over an oven-ready meal for us so that we don't have to worry about dinner tomorrow.

He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.
~Revelation 21:4
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Thursday, March 29, 2007

Day +79

Yesterday's visit to the hospital was relatively quick and painless. Our friend Marcus is doing a rotation at the hospital, so he provided some entertainment while we were there. Joe tested negative for CMV again. Yay! This is really wonderful news. With Joe's counts and the drugs he is on, the doctors would have preferred to keep Joe on Foscarnet, at least a few times a week until Day 100. Since Joe developed a side effect, the doctors are keeping him off everything used to treat CMV for now. If Joe were to test positive again (and we know that he will NOT), there is a third drug (after Ganciclovir and Foscarnet) that would be used as treatment.

The not so fun parts of this week are that Joe's GVHD rash seems to be getting worse again. As you might recall, his skin was peeling like crazy, but the rash seemed to be healing. The peeling continued in waves, and the rash continued to look better. As the rash got better, the steroids were tapered more and more. Over the weekend, the rash started to look more pink again. Now, it seems that the rash is back with a vengeance, and Joe is itching like crazy. He calls it alligator skin. Yesterday, the steroids were increased slightly. Hopefully that helps. To make things even more fun Joe is experiencing some edema. It is not too much of a concern right now, but Joe's usually slender and sleek ankles and feet now look like they belong to Miss Piggy. Joe is not really feeling like himself right now. And finally, because the rash and edema are not enough to procur sympathy from others, the Hemorrhagic Cystitis which Joe so eloquently described in a previous post has returned.

Joe isn't exactly enjoying all of this. How could he? But he is being tougher than can be expected under the circumstances. Tomorrow we'll be returning to the hospital. We'll keep our faithful readers updated!

The Lord will sustain him on his sickbed and restore him from his bed of illness.
~Psalm 41:3

Wednesday, March 14, 2007

About Joe.

Last Tuesday, as I was ending a brief and tumultuous affair with Mr. Stomach Flu, Joe was having trouble escaping the grasp of the evil temptress Ms. CMV. Although Mr. Ganciclovir tried time and time again to intervene on our behalf, Ms. CMV refused to let go (who could blame her?) We ended up firing Mr. Ganciclovir and hiring Mr. Foscarnet. It still took some time, but being meaner and tougher , Mr. Foscarnet with his twice a day interventions seems to have scared Ms. CMV into submission. As of this past Monday, Ms. CMV has gone into hiding. Just to be sure that she won’t be bothering Joe anymore, Mr. Foscarnet will continue to intervene twice a day. If Ms. CMV behaves tomorrow and Monday, then Mr. Foscarnet has agreed to only visit once a day for a week or so. As for me, my relationship with Mr. Stomach Flu is completely over. Affairs are bad. Falling under the spell of an evil temptress is also bad.

Meanwhile, Joe started to develop cold/flu symptoms. Last week, it was mostly some coughing and sniffling in the mornings and evenings. The coughing and sniffling steadily increased until Saturday evening when Joe started to feel chills. On Sunday, he felt a bit better, but his WBC had fallen to only 0.7k/mcL. The doctor wanted to be sure that Joe wasn’t developing pneumonia. He also wanted to confirm that Joe ‘s counts were dropping due to the CMV, and not something else. So on Sunday, Joe was admitted to the hospital. Joe was given all kinds of antibiotics to ensure he was armed against all kinds of infections. A chest x-ray showed no signs of pneumonia.

By Monday, Joe was feeling a bit better. A bone marrow biopsy was scheduled for the afternoon. Joe was introduced to the wonders of morphine for the very first time. It is a amazing that it was never offered before. It made the biopsy so much more pleasant. It still wasn’t fun of course. But it was far better than the extreme torture Joe has endured in the past. Tuesday was better yet, although the cough was worse. What made Tuesday even better was that the CMV results came back negative. By evening, the doctors decided that there was no reason for Joe to be in the hospital anymore. We left the hospital sometime after 9pm last night. Of course we still have to return every single day.

That brings us to today. It was a long day. Joe’s rash from GVHD now covers about 90% of his body. Many areas are starting to peel. Joe’s eyes have become puffy and dry. This is either due to the GVHD, or water retention from the steroids. The coughing continues. And since Joe has had his line in for nine weeks now, the area under and around his dressing has become very sensitive. It peels and bleeds, and the dressings start to look ratty before his weekly dressing changes. Still, Joe remains strong and says he doesn’t feel too bad. The first thing today was that one of Joe’s lumens was clogged. This is an easy fix with Retavase. Today however, it took longer than usual. More of a nuisance than anything else. Then Joe’s magnesium results took an unusually long time to return. Of course that was the one thing that Joe ended up needing more of, which further extended our day. Finally, Joe received a call from one of the doctors. The results from his bone marrow biopsy showed that the graft went from 98% to 89%. Still, there is no room for worrying around here. The doctors said that it is not uncommon to see fluctuations this early. Also, they are encouraged that this was caught early. Joe is at day 64, and his next biopsy originally was not going to be until day 100. The plan is that Joe will be getting five days of Vidaza starting tomorrow. Hopefully, this will scare Joe’s cells into going away, and his donor's cells will be able to fight harder. This time, the dosage of Vidaza will be lower, and it will be administered IV rather than with injections. No worries. Only prayers, hugs, and positive thoughts are welcome.

That concludes this update on Joe.

Tuesday, March 06, 2007

Pressin' On.

Hello, hello! It's Karen. I've temporarily regained control of the blog. It has been an interesting couple of days in our household. On Sunday evening, I developed some pains in my stomach. From then until now, I have experienced something quite similar to what Joe was experiencing post-transplant. As you may recall, he had little appetite, and pretty much everything that entered his body would proceed to exit in a most unpleasant matter. Yes, it is my turn...although I managed to skip the life-threatening diagnosis, chemotherapy, and transplant. Okay, I guess it is totally different. Apparently, I'm just one of those lucky people who managed to contract that Stomach Flu that seems to be everywhere. I was so frustrated, because I've been able to avoid getting sick for so long. The timing was awful too, because both of Joe's parents are also very sick. Joe started joking around that even though he is rightfully the "sickest" one of us all, he feels the greatest.

Joe traveled to and from the hospital by himself yesterday and today, which worked out okay. I've been wearing a mask, walking around with Purell in my pocket, and wiping down everything I touch with alcohol. Joe and I spend little time in the same room. It feels very weird, because we have been together almost 24/7 for months now, and I've gotten used to being the caretaker...or at least doing a decent job pretending to be a caretaker. And yet, this evening Joe made me congee/jook/rice porridge/mue/okayu/lugao/pick your favorite name... Seems a little backwards! I think I might finally be feeling better. I hope so anyway. What this short two days of a common stomach flu has taught me though is how incredibly tough Joe and others like him are. Two days and I feel like a miserable, useless, whining blob of blahness. Joe has been through so much more for so much longer, and yet he is still able to be the king of silliness and find humor in every step of his journey. Do I have the coolest most amazing husband, or what? I think the answer is that I have the coolest most amazing husband!

Enough about me, more about Joe. Unfortunately, the results of Joe's CMV test from yesterday were still positive. Today, they switched him to Foscarnet. It is not as well-tolerated as Ganciclovir, and can cause un-fun things like kidney problems and a decrease in Calcium. But Joe will be closely monitored, and this should definitely take care of the CMV. The problem with the Ganciclovir is that it doesn't work so well against steroids and FK5O6. While the doctors attempted to lower Joe's steroid dosage, it apparently wasn't enough. Joe can't be taken off the steroids completely yet because they are what make his blog entries so funny. I mean, because of the rash caused by the GVH. Even as the dosage was tapered, we could see that the rash was spreading. So far this hasn't bothered Joe too much though. His head has been spared, so Joe is still able to admire his reflection in the mirror. :) And of course Joe needs to take FK5O6, so little could be done with that. Today was Joe's first dose of the Foscarnet. He did notice that it makes him feel a bit nauseated, and very tired. Also, his taste buds seem to be acting funny again. We are confident though that Joe will be CMV negative by Thursday...and then he'll just need to take the Foscarnet for another week or so...and then we'll be done with it!

Well, we're still pressin' on.

Thank you so much to the Jou's for bringing us so much food last night! It was so appreciated. And thank you to Gordon and Julie for the sweet gift!

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure.
~Psalm 71:14-15

Saturday, March 03, 2007

Ganciclovir

As of Thursday, Joe still tested positive for CMV. We're going to pray and pray and pray that the results from Monday's draw will be negative! If Joe was not still taking steroids for his GVHD and FK5O6, the Ganciclovir would have worked its magic by now. Unfortunately, he can't be taken off those meds completely, but the dosages have been lowered. Let's just keep praying!

I posted a photo of Joe getting his evening dose of Ganciclovir. It looks like a little baby bottle. It is as cute as anything medical related could possibly be. You know we'll find entertainment any way we can!

That's it from me today. I'm hoping Joe will post again soon, because his posts are so entertaining!

A very Happy Birthday to my 1st Auntie! She hasn't been exempted from getting older each year, but somehow she has managed to get exempt from looking older each year. It is truly amazing.

And Congratulations to Nancy and Bill who are the proud parents of a second baby boy!!!!
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Tuesday, February 27, 2007

Hemorrhagic cystitis?!

Hey everybody!

Tomorrow will be Day 50 post-transplant! Unfortunately, as you probably know by now, I got my first semi-serious complication last week with a CMV infection. The good news is I still feel good overall and I've been getting to come home in the afternoon/evenings the past few days. The bad news is that the CMV has not been completely eradicated and the virus was still detected in my bloodstream as of yesterday's blood draw. So for now, I have to continue with the twice a day IV ganciclovir and my next blood test for CMV will be Thursday. So please pray that this will be negative on Thursday. Ganciclovir is supposed to be very effective in treating CMV but has the bad side effect of decreasing my white blood cell counts, so ideally, I don't want to be on the medication for too long.

Now, we'll play scenario games again. Imagine this time that as a reward for a long, hard week at the office, you and your lovely wife enjoy Belgian chocolate dipped strawberries and mimosas on late Saturday morning after which you hop in your fire red Lamborghini and motor to the day spa. There you enjoy couples total body massage/facial/wax/manicure/pedicure/body wrap treatments given by Angelina Jolie and Brad Pitt (in my case, either one would suffice... you know, Brad and I would talk politics and sports). Then, you take your private jet to partake of a late lunch at, let's say, Spago, prepared by your personal chef, Iron Chef. You do some shopping on Rodeo Drive and buy a couple Rolexes or Pateks and consider buying a poodle to go with those fabulous Manolos. Now it's time to enjoy a romantic dinner at your favorite restaurant on Mars with an incredible view of Earth. You make it back just in time for courtside seats at the Super Bowl/World Series/Stanley Cup finals topped off with a private performance by the "All-Stars" of the world's greatest symphonies including a world premiere of a ballad written and performed in your honor by Luciano Pavarotti.

Now, let's change the scenario a little. Instead of chocolate and alcoholic beverages on a Saturday morning, imagine that you have to urinate; instead of a Lamborghini, you have to urinate; instead of total body treatments, you have to urinate; yep, instead of Angelina and Brad, urinate; instead of private jet, Spago, Iron chef: urinate. I think you're starting to get the picture. Welcome to the world of hemorrhagic cystitis!! Sounds fancy and complicated doesn't it?! It's really about urinating, and on top of that, there's some blood involved. Really I'll be sitting there minding my own business happily picking my nose or something as intellectual as that and suddenly, without appropriate warning, my urinary apparatus and brain will shout "You better find a toilet for me in the next three seconds or I'm going all over your pants buddy! One... two..." This happens every 20-30 minutes. In all seriousness, this hemorrhagic cystitis thing is supposed to be a fairly common complication after a bone marrow transplant. It involves inflammation of the bladder and can lead to urgency (feeling the need to pee all the time), frequency (going all the time), burning and pain (not fun), and hematuria (peeing blood... yikes!). It's rather disconcerting seeing blood come out, but fortunately, this whole thing is supposed to be self-limited. So for now, I'm told to drink lots of fluids and ride it out. Unfortunately, this thing can last up to six months (!) which would be a worse case scenario. Again, let's just hope and pray that my doctors don't have to end up putting instruments up my you know what and do "bladder irrigation."

So my advice to you: try to avoid getting hemorrhagic cystitis. And if you see me whizzing by you (pun intended), it's not because I'm being rude. Just get outta the way, okay?!

Joe

Friday, February 23, 2007

Home!

Joe was supposed to stay at the hospital until at least Monday or Tuesday. However, once again, his good behavior has paid off! Even though Joe is still CMV positive, there is evidence that he is definitely responding to the treatment. Add that to the fact that he is a doctor and an extremely compliant patient, and the outcome is home sweet home! Of course Joe has to go back to the hospital every single day again. But this is far better than spending restless nights at the hospital. The nurses mean well, but they were entering the room every hour or two, and flipping on the super bright lights without warning. Not so fun. So the plan is that Joe returns each morning for his first dose of Ganciclovir. Then a visiting nurse will come to our home in the evenings for the second dose. Hopefully by Monday, Joe will test negative, and then he'll just get one dose a day at the hospital. Thank you everyone for all of your prayers, love, and cards!

Now if you can please send a bunch of prayers to Amy and her family. They can use every prayer they can get right now. No, we do not know Amy or her family personally. Chances are, they don't have any idea who we are. But ever since her blog was shared with us, she has been in our prayers. She is a young lady of amazing strength and faith. We have learned a lot from her, and been inspired by her. Just pray, pray, pray!

Also pray for Baby Livi and family. She'll be starting her transplant procedure next week. That little girl is such a trooper. Not to mention she is too cute for words.

Thank you, thank you, thank you!

Wednesday, February 21, 2007

Oh dear...

After thinking for a bit, I fear that I may be the reason that Joe is in the hospital. Just last week, I mentioned that I was craving a Pittsburgh Grilled Chicken Salad from the hospital Friendship Cafe. Of course, I didn't know when I'd get one, since Joe and I have been eating lunch at home - even on hospital days. Alas, yesterday, I was able to get my salad. But I didn't want it to be because Joe was admitted back to the hospital! So is this indirectly my fault? Nah.....

Joe continues to be doing well. Tests for CMV are drawn every Monday and Thursday. So tomorrow Joe will be tested again. The doctor said that he anticipates that the results will still be positive - although if it is negative, the doctor will celebrate with Joe! The doctor is also quite confident that by Monday, the test will be negative. Both CMV, and the Ganciclovir used to treat it cause neutropenia, so Joe's counts have been dipping. Treating Joe is really an art blended with science. Everything needs to be balanced. When the doctor was explaining things, it was like reading a "Choose Your Own Adventure" book. If "this" goes down to "this" than we'll need to do "this." But if "this" happens, we do "this." I'm just glad that the doctors are experienced and confident. Not to mention that ultimately, God is in control. *whew*

In other news, the shower in Joe's room was only spraying freezing cold water this afternoon, but it was quickly fixed. Yay! Joe's appetite has been great. So great that the hospital food actually seems appetizing. And, Mint Mojito is a pretty fun flavor of Orbit gum!

Since it has been requested, here is the link if you'd like to send cards to Joe while he is incarcerated...
WPAHS E-Card
He is back at West Penn Hospital, and for now he is in N-612.

Tuesday, February 20, 2007

Back in the hospital

My dear Joseph is back in the hospital. This morning, we were preparing to leave for Joe's semi-weekly appointment at the BMT office. Before we left, we received a phone call. It turns out that Joe's blood draw from Friday showed that he tested positive for CMV. Joe would need to be admitted. The frustrating part is that Joe has been feeling great, and looking great. So even though it is very important that he gets treated before the CMV gets out of control, it feels like he is going into the hospital for no reason. The fact that Joe is feeling great is also a blessing. Being positive for CMV post-transplant can become very scary. But thus far, Joe has been asymptomatic. The positive result is most likely caused by reactivation of the virus.

The treatment for Joe will be aggressive. He'll probably be in the hospital for at least a week. Joe will be getting IV Ganciclovir every 12 hours, that will run for an hour. This will happen for at least four days. After this, Joe will get a dose once every 24 hours. Even after Joe tests negative for CMV, he will continue to receive Ganciclovir for another two to three more weeks. By that time, Joe should be discharged to short stay. But this will mean we'll be back to our former routine of going to the hospital every single day. If this is what it takes to make sure that Joe is okay, than so be it!

The wonderful thing is that Joe remains positive and in good spirits. He is a trooper, he is! It's definitely not by choice, but the hospital is now a second home for Joe. Sometimes we call it the slammer, sometimes we call it a hotel. Depends what kind of mood we are in. :) Joe is well prepared for this stay, with his PSP, ipod nano, books, and sudoku.

No worries. Joe is going to be just fine. God has blessed us through every scary bit of this journey, and this will be no different. Thank you for all of your prayers!