Miracles do happen! Today I did PFT's and the first two tries I got 33% again, then 38% and then 40% and .97 Liters. I knew they were probably going to send me home anyways, since I was feeling better, but we were all wondering why the PFT's didn't match up with the fact that I felt better. I was so elated when I hit 40 and couldn't believe it! Warren had taken off work after 10:00 and was at the hospital by the time I got back from PFT's.Soon after we got back to my room, the picc line was pulled, PT came and went over things I need to continue doing at home, I got my discharge papers and prescriptions and soon we were packed up and ready to go.We stopped to eat at Macaroni Grill, then I fell asleep on the way home. It felt so good to pull in at home and be greeted by my little dogs, who danced and whined with happiness. Everyone was so wonderful at the hospital, honestly it was pretty unbelievable...but it's so good to be home! Now the hard part...not to overdo, which is my tendency. I'm really going to try! I'm so ready to go sleep in my own bed!!
Worked and worked on trying to get some pictures on here and couldn't DO it. I was frustrated and then thought of my good buddy JoEllen, who of course came to the rescue! I emailed her the pictures and she put them on...see how we work as a team? So here are just a few pictures, it's always nice to see pictures instead of boring writing.
This is when we were at the mall on Sunday...my afternoon out! And yes, I know I looked tired...I was! We had gotten smoothies and had just seen the most awesome trampoline on display with sides on It and a basketball hoop. It's all Kaydens been talking about ever since, I'm told. We left soon after to get this tired mama back to bed!
The boys think my bed is ever so cool...whenever they come, we go on rides...up and down, head up, head down, unlock the brakes. I just hope the bed holds up!
We were in a toy room and Kayden was drawing a picture of me...
...as Perrin and I watched.
Mickey's visit was so much fun! He did a little dance and wanted to lick and lick!
Kayden being my doctor...he'd take my temperature and then give me multiple shots.
The boys have loved playing with the Thomas the train set I got for them at the volunteer place.
The Ya-Ya's came one morning last week, and the room got a little bit wild during their visit...so much laughing!
Yesterday I did have to do PFTs again...I was hoping to get them up atleast a point...instead they dropped 4 points. I even tried 5 times instead of 3 over a period of half an hour, but couldn't get it above 33% and .79 Liters. I was so bummed, I was so sure I would get higher, not lower! I'm not sure what the plan is going to be next. I do feel better, that's why I don't understand this. I'll just maybe go by how I feel and not be dictated by a number...?
Yesterday I had my first excursion into the real world in nearly 3 weeks! It was cold but sunny. It was so much fun to be out of here for awhile and not be hooked up to an IV pole! Yay!!! We drove about 15 minutes to Summit Mall. I was most excited about eating out and we went to PF Changs...a wonderfully yummy dinner of fried rice and shrimp in a sauce on crunchy rice noodles. We shared this and I still had enough to bring back to eat for lunch today. We walked around the mall...Would sit when I got out of breath then walk again. I found a Brookstone store, so sat in the massage chair for awhile...put me in a trance! I got some lounge pants and we got a camera attachment for my iPad! So I downloaded some pictures, but now can't figure out how to put them on here. I guess I'll need to read directions to see what to do. It's different from my home computer.Maybe I can figure something out, but for now, no pics. Jeremy, Steph and the boys met us at the mall too, we sat with them in the food court, walked around awhile with them and then got smoothies. We got back to he hospital around 4:00...it was a nice few hour getaway! Thought about a movie, but I was tired.
I found out today that my hemoglobin is low, due to taking blood from me every day for almost 3 weeks...vampires they are! So now I'm on iron and vitamin c. Creatinine is a bit better because of having IV fluids all the time. Tomorrow I have to do the dreaded PFTs again...hoping and praying it will still go up some more. Today at PT, I rode bike for 8 minutes...even doing some HILLS, but then I was pretty uncoordinated doing some exercises on the big ball...being coordinated has never been a real talent of mine! I did some walking around the hospital again...I so wish that it would be warm enough to walk outside, but it's been pretty cold. I just realized this morning that I still have snowmen up at home! I was feeling too yucky to care before I came here and now it's almost April! Oh well, I'm sure Warren doesn't even think about it, he'd probably leave them up year around and not notice!
My PFTs on Friday did go up 4 more points, so I'm now at 37% and .88 Liters (how much 02 I can take in a deep breath). This is pretty much the same as when I was admitted to the hospital, then they fell that first week. Even though the numbers are the same, I do FEEL better than when I came in. I'm working hard at physical therapy...plus going for walks in the hospital. I'm still hooked up to iv fluids all the time, unless I want to take a walk or go to PT or go to do PFTs. I walked to the cafeteria today at lunch to get my own food and brought it back up to my room...that was a pretty good walk. I will do PFTs again on Tuesday.
I did some stretching activities this afternoon, while I was listening to the Hiland basketball game, playing in the state finals. That passed the time...and we WON! Would have been fun to be there to watch...I'm sure most of the east end of the county was there! Yay Hawks Div. IV state champs!. That hasn't happened since 1992!
I am excited for my pass tomorrow. We are going to Fairlawn to eat and we'll just see how it goes as to how long we stay...maybe a movie?? I'll see how I can function on the "outside" for awhile! It seems really weird to me that March is about over, it feels like it didn't happen...
Ive been here for 15 days. I'm actually surprised that for the most part, it's gone fairly fast. Yesterday was a pretty good day...Steph and my littles came and surprised me...and my sister brought my little Mickey for a visit. He danced all around on my bed, licked and licked and snuggled up. We went outside for a bit...it was a little chilly, but not too bad. I walked Mickey while the boys had fun on the play set. And it's nice to be outside because I don't have to wear a mask. I do when I'm anywhere outside my room. I really wish I could post pictures...I told Warren to get me the adapter thing that I need.
My creatinine level started to creep up a bit again, so I'm back on fluids. Shoot. But whatever it takes to help my kidneys, right? Today at PT, i did stairs, a lot of walking all over the hospital and rode the bike for 10 minutes. I was impressed with myself! I'm feeling stronger. I'm doing PFTs again tomorrow and they need to keep going UP again...even if just a point. The way it sounds is that I'll be here awhile yet...they want to get my PFTs up as high as possible. And I'm OK with that, because I want to feel as good as i can before going home. They are giving me a pass to get out of here for awhile on Sunday. I thought about going home, but not sure it's worth it with the drive. Maybe we'll just go out to a nice restaurant...have a little date. I'm ready to get away for a little, so I'm excited!
And now I'm going to chill and listen to our Hiland boys game in the state semi-finals. I feel like I'm probably one of the few people from our little town that isn't there! Good luck guys!
What is a pulmonary function test (PFTs)? It's a test that measures your lung function. This is how I do it...you sit in a phone booth type enclosure with the door open and you put a clip on your nose...you put your mouth on this big round tube which is hooked to a spirometry machine. You breathe normally one or two breaths and then take as deep a breath as you can and blow it out as forcefully as possible while the lady yells go go go and you blow until you're thinking you might pass out or die. Seriously...you almost see stars! Then you wait till your heart calms down, drink some water, try to relax because you have to do it two more times...they take the best score out of three. How did it go yesterday? Mine had gotten really low, and I managed to get them up 2 points...I was really hoping for more, but on the other hand, I'll take anything that is UP instead of down!!! I will do it again on Friday...hoping for more improvement then. Baby steps...
The last couple of days have gone a little better. Im still getting iv fluids around the clock, but I could be set free to go for walks, so it was nice to do that over the weekend. My legs felt really rubbery at first! Today Michael & Lindsay (niece) brought me Macaroni Grill food and then we went for a walk outside...it was such a nice day and SOOO good to be in fresh air! I went for a walk this evening too...it's just harder to walk around the hospital because I have to wear a mask, making it more difficult to breathe. When I'm outside, I don't need one...so much better! Awhile ago, I had a dog visit...it was an enormous goldendoodle named Mickey...it made me miss my tiny Mickey and Meg.
A nice bit of good news is that my creatinine level has come down a little, which means my kidneys are now functioning more like 50% instead of 40. My doctors were happy...they didn't think it would get any better while I was on Ivs, they werent sure it would EVER get any better. So this is huge!
The awful sinus headaches and nausea are gone (PTL! ) and I'm eating again.
My pfts were really down on Friday...I've tried not to stress over it. I will do it again tomorrow afternoon...so if you want something to specifically pray about, that would be it! Even if it would go up a couple of points. My numbers have gone down pretty much every time I've done pfts since the beginning of Jan. I'm way overdue for some better numbers!
I have been taking some pictures, but don't have a camera cord for my iPad. Kayden and Perrin were here a couple of times this weekend and enjoyed the doctor kit...Kayden kept taking my temp and giving me shots. And they jumped up and down when I gave them the Thomas the train fold out set...it's so cute. They had great fun with it!
Conversation by Steph and Kayden on the way here Sunday.. Kayden-"we're going to see grandma, maybe she will have a surprise for us" Steph-"she doesn't have a surprise for you every time" Kayden-"oh, but grandma is full of surprises!"
I would LOVE to be surprised with some better pfts tomorrow!
Im still here and have had some not so fun last few days. They took me off the merepenem iv, because they thought that was what was causing the nausea...I'm getting ceftazadine instead. I also began having the respiratory therapists come here to my room to do therapy instead of using my vest those few days when I could hardly get out of bed. They use a percussor thing that vibrates like a vest, but it's different and I like it as a break from the vest, so I'm going to keep doing it while I'm here. I do 8-9 nebulized treatments a day and 3 percussion treatments. I havent been able to eat much the last few days, so the nutritionist started making me some high calorie milkshakes and Ive had a couple of meal replacement bars. I feel like tomorrow i can eat again, my stomach is settled down now. The hospital offers massages where the massage therapist comes and works on my sinuses and lung pressure points. I had a lady the last two days, and today Mr. ponytail came back to do one. The massages are wonderful! I had disappointing pfts today...will try them again on Tuesday. Today was a nice sunny warmish day...Tiffany came and we went for a little walk outside. There is a pretty path with benches...crocuses were coming up...it was nice to breathe some fresh air and sit in some sunshine! We saw some bushes shaped liked monkeys, they were a little weird. My wonderful hubby came tonight and we listened to the Hiland game on the iPad.
Why am I in a childrens hospital, you ask? There are only a few accredited CF centers in Ohio and Akron is the closest to where we live, so I go to that center, which is connected to Akron Childrens Hospital. There is an adult wing at the hospital and I'm in that wing. I've been in plenty of hospitals in my life and if I have to be in a hospital, I'm glad I'm here! Everyone has been fantastic so far! And now I'm finished for the day and it's time to sleep so I can start all over in the morning!
Hey everyone! It is JoEllen again. I was privileged to be in Marcia's presence tonight! I figured it was time to go visit my friend and I am so glad I did. I sure do miss her just like you miss her. During our visit she said several times, "I do not want to go home until I feel better". We all feel the same way too, Marcia. We miss you but we just want you better!
Today was a little rough. Marcia's PFT's didn't go well. She wasn't feeling well to begin with, so when it was time for the breathing exercises she just couldn't handle it. She was light headed and nauseous. So, they will try it again in a couple of days. Pray that she will feel better when that day rolls around. Today she found out the results from the cat scan: an accute sinus infection. Goodness! AND to top it all off, throwing up several times from the nausea. So yes, it was kind of a rough day.
It may have been rough, but she was definitely in good company for most of the day. Her daughter came to be with her for a chunk of the day AND she also had a surprise visit from her son and her two handsome grandsons. She was very happy about all of that. She definitely loves her family.
Marcia wanted me to share with you that she has been able to have a little bit of fun...the other day she enjoyed a 30 minute massage! The young guy (with a pony tail!) was very nice and worked with lung pressure points. He also used lemon grass oils, which is good for the lungs. She enjoyed it so much and looks forward to his return! :)
Another fun thing....with the help of a nurse, Marcia discovered a TOY ROOM! This special room was full of brand new toys...shelves and shelves. People donate toys for the kids (patients) at the hospital. The nurse encouraged Marcia to pick out a few things for her grandkids. She found matchbox cars and a doctor kit. The boys had a blast with the kit. Her oldest was "checking out" his Grandma with all the fun doctor gadgets. I also hear that he gave a dog a pretend shot!
Prayer request: IMPROVED lung function...IMPROVED kidney function...headaches to go away... and that tomorrow will be a much better day!
Keep the comments rolling in...SHE LOVES TO HEAR FROM YOU!
Today was a headachy sort of day...actually the weekend was too. It was bad this morning and i was very nauseous until i got zofran through my picc. It feels like a really bad sinus headache, but they're not sure if it's just sinus or a combination of sinus and side effect of the gamma globulin. My doctor has been trying hard to get this under control...I reacted to one med, my neck got all flushed and red (I was a redneck) I also had a sinus CT scan this afternoon. I've been doing nasal rinses twice a day (have done this for years) and tonight they are adding an antibiotic to the rinse. My picc had a small clot in it and even though it flushed ok and the ivs ran ok, they couldnt draw blood. The picc nurse came and put in the clot busting med and an hour later, it worked. No more getting poked in the other arm for bloodwork! I went to PT and did stretching and bending exercises and then did the treadmill for 5 min..it was set low, but I have to say, i was impressed with myself! I am now officially off of prednisone, PTL! Maybe I'll be able to sleep better at night, plus they are changing up my sleep meds a bit. I've been wheezy in my upper lobes, so 2 more xoepenex (nebulized) treatments a day, in addition to the other 3 times while doing my vest. My voice is improving, I'm able to speak again!
******************* A few interruptions and treatments later. Got nauseous again, threw up and got zofran again. My picc line is once again not allowing blood draws...geesh, what's up with me and picc lines?
Please pray for headaches and nausea to stop! I have PFTs tomorrow...pray for lung function to be up!
And hi to my peeps in Florida...eat some Sweet Berries for me!
I think I should have JoEllen take over my blog for me...that's the most comments I've ever had on a post! Seriously, thank you Jo Ellen for stepping in for me! And thank you all for the kind encouraging words and prayers...I appreciate it so much! I feel like I've been in sort of a whirlwind since I've been here (late Wed. morning). So many tests, scans, treatment times, physical therapy, etc. I had been trying to blog and couldn't get more than a couple of sentences and I had to do something. Finally this afternoon was calm...well, sort of! My sister was here and we had a relaxing time listening to the Hiland boys game...well, not that relaxing...it was a tense game, be we won!
They are taking very good care of me, everyone is wonderful here! I am not sleeping too well at night, because of the prednisone and just being in a different place and yes, they do give me something to help sleep. Last night went a little better. My face is puffy from being on them so long...they have been tapering the dose to get me off, because steroids weaken the immune system and mine is already not so good with the low t-cells. The CT scan showed severe lung disease throughout. Not fun to hear, but a reality.If my lungs were an ATM machine, they would be pretty low in money right now! The goal is to get a little more money in! I still am very short of breath, but am getting 02 pulse ox readings in the low to mid 90s, which is great. I've not had to be on 02, even at night. But my body just has to work harder to get it in. I got a gamma globulin treatment by iv Friday...it's a very carefully monitored treatment and I've had headaches yesterday and today, possibly from that.
Sunday I am culturing pseudomonas and aspergillus. I'm on levaquin and merepenem Ivs...one every 12 hrs. and one every 48. Warren and Tiffany were here awhile today and I went for a walk down the hall...nice to get out. Jeremy, Steph and the boys will be here soon for a little. I will they to keep blogging daily as I have time...when I don't, it'll be back to JoEllen.
Specific prayer requests for: Kidney function to improve Lung function to improve...I do PFTs on Tuesday I want my voice back! I've had laryngitis for more than a week Rest
Hey everyone, this is JoEllen. Marcia asked me if I'd be willing to post on her blog today. Some of you may already know this, but for those who do not know, Marcia was admitted to Akron Children's Hospital (in the Adult Cystic Fibrosis wing) a few days ago. She has not been feeling well for the past couple of months and with the help of her docs she has been trying different things to help her get feeling more like herself. During her doc appointment on Tuesday, they decided it would be smart to admit her so that they could monitor her daily. We are not sure how long she will be there, but she will be there for at least one week. It has been an exhausting few days, lots of tests, scans, blood work, picc line (lots of trouble getting it placed).
-Today she started Pulmonary Rehab.
-Her kidneys are only functioning at 40%, so the medical staff are being very careful with the Ivs.
-Lung function is 36% FEV1 and .88L, so she has been short of breath.
-o2 sats aren't bad, her body just has to work hard!
Pray for her kidney function to improve as well as lung function. Pray for peace and rest.
We all love Marcia to pieces! Together, let's pray her through this icky time.