Damn

I caught a cold. Mom is looking to see if she can find decongestants that I can take. Nothing big, I just hope it goes away. Sinus pressure, headache, cough, and body aches. With all the immune suppressants I am on this could get fun! Ha! Looks like I will be staying in this weekend.

Nurse Visit

My nurse came today. And she is so nice! Her flight leaves at 2, so we sent her to the Mesa to take pictures. She said everything was looking good, that my catheter is healing well, and that the setup for my meds is going to work. I just need to get a non-slip pad for my rug in my room. Miss Bunny is moved out of my room and into the livingroom. I am not sure if she prefers that or not.

Yesterday I did start to get side effects of the drug, but nothing major. I stopped a headache before it got too bad, and I had a bit of leg cramping. But I have noticed that if I have another trigger for a headache, upping the Remodulin makes the headache terrible. last night when I went to bed I couldn't sleep at all. My sinuses hurt so bad. Well, as I became more and more tired, a HUGE headache set in. Luckily Tylenol 3 helped that, but it still wasn't fun.

Carson is on his way over and we are going to go out. He needs help with his taxes, and I need to get out. Go shopping. SOMETHING!! I have to get bunny supplies, and craft supplies, and a mirror, and something else... I wrote it down though. Oh yah! I was thinking curtains!

Dull Day

Well, I know I haven't done a whole lot with the blog, and that is because there isn't a lot to say! I have not been doing a whole bunch the last few days. Well, I take that back. Yesterday I did a lot of calling. I am trying to get assistance for my COBRA premiums. There is a non-profit orginazation, The Caring Voice Coalition, who can help. But first I have to go after medicare and the pharmaceutical company for help. I have done that, now I have to get rejection letters from them and I can get help! I also met with my "case worker" for food stamps yesterday to get another 3 months of those. And I did something else... can't remember!

Today I don't really have anything planned. I upped my medication again this morning, so I am now at 10ng/kg/24 hours. Hopefully we get some side effects, but not too bad! My nurse gets here tonight and we are getting together tomorrow morning at 10 am.

Here is a link to the Pulmonary Hypertension Association. They have a lot of great info and stuff. I joined the association, I feel it is important. I also joined a patient contact program theough tthe company that makes my drug. We will see how that goes! My uncle asked me a few questions about the medicine. He asked if I was just going to go up or if I would go down too. I told him that we only go down if I can't handle the side effects, so like we went up too much. After I get to a treatment level with the medicine we we slow down on going up, but it is the nature of this drug that I will never be at a "stable" dose for long. He asked about the dressing, and I showed it to him. Now it is just covered by a clear plastic dressing. The stitches, there are 2, will be removed after 6 weeks. I spoke with my Dr in Denver today and I will get back in touch with him in a month to do another echo to see where my pressures are at. I believe I said before that I go back to Denver in June. This echo can be done here, so that saves time and money!!

I have to get my room set up for my medicine. Right now that means that I have to get two holes repaired in my wall. Then I have to put my bunny downstairs. I change my cassettes and dressing in the livingroom right now, and that just isn't going to work. I hate relying on other people to get things done. I feel bad. Especially with this stuff. There is an urgency to get this done. I REALLY wanted it done by the end of this week. But I feel I can't urge or push because I am not the one doing it. My nurse is comming tomorrow, and she has to approve of the environment for my mixing. Where it is now I am just not sure it will be ok.

Since I have had a lot of down time the last few days, I am working on something for Mom for Mother's Day. (Shhh! Don't tell her!) It should be fabulous! If anyone has ideas, suggestions, or wants to help let me know.

I will end it here, I think that is enough. I will let you know how things go with my nurse tomorrow and how the medication change went today.

Another Day

My dose has upped again. And so far I am not having any side effects! Of course that could change. I will go up again Thursday.

I spent a lot of money so far this week! Haha! I had to get suff to redo my room, make room for my medicine, make it sterile. You know... all the good stuff! I did splurge and get a Kindle. It is an electronic book. Light, easy to read, make it easier to read the new releases than by hardback!

It has been kinda stormy here the past few days, and my joints and ligaments are not enjoying it. I am trying to do crafty things to keep busy. I need to learn how to do the pearl stitch while knitting (I STILL can't get it!) andhow to read a pattern. I would love to make me a hat. So if anyone has time and knows how to do either of those... please show me! I am also painting picture frames for my neices. I finished Tori and Eme's , not I have to start Belly Button's. (That is what Niki calls Annabelle)

I have finally gotten all of my pictures off of my sister's camera! So I will add some to the blog! And myspace and facebook.

Well, I guess that is all for today. Thank you all again for love and support. I love you all!

Rested

Yay! I slept last night!! I woke up early, but I slept WELL!

I talked with my nurse this morning and we are waiting to raise my dose again until Monday. I need to talk to my primary to get a prescription for Tylenol III before we go up. Then we are going to go with a schedule of upping Mondays and Thursdays.

Dad asked about disability. I was told by Stephanie that I will not be denied. So... less stress!!!

Tami came over today to visit. It was wonderful! We went to Target and got a thing to store my medicine supplies in. She brought me chocolate too! Lots of chocolate! Dark chocolate! And baskets and magazines.

I am almost back to normal. I can't shower for 10 days after the procedure, I get to sponge bathe. I am doing better. I am able to do more. Not a lot more, but more. I was reminded today by Sondra that I am not wonder woman, don't overdo it!

Home!!

I am home!! And I am going to bed now!!

I will update you tomorrow.

Discharging!

I get to go home!! Yay!

I just finished my training here. I made my medicine (not just practice, but the actual medicine) and changed my pump. Then I cleaned my dressing again. Because of the coumadin I bled yesterday, which is normal. I did really well of course. If I didn't they would not be letting me go. Stephanie will be in Junction Friday to do my next dressing and make sure everything is set at home.

Like mom said, last night we got the first side effects. It sucked, but it is mostly gone. I love my momma bear! As assertive as I am, sometimes I am not enough so. I am glad to have her here!

You know, the mixing the medicine doesn't bother me. It is the dressing. I get nervous and serious with it. I think it is because the medicine I can redo if something goes really wrong, but I know I can't do the dressing wrong... there is no way to redo it if I get infected.

I don't think we are making any stops along the way... except for Georgetown. I want to stop there at the visitor's center. I think mom and I are ready to get home. Oh wait... we are stopping for Little Boy at a store to get Faygo soda. I don't know... don't ask me.

Side Effects

Anna is now up to 6 ng (nana grams) of Remodulin and 2 whatever's of cumidin-now she is showing side effects. Most of the time, we think of side effects as being bad; with the Remodulin it is an indication it is working. The side effects are treated and as they subside she will begin to feel better, after feeling better for a while her body will be ready for an increase. The side effect for tonight is a headache, similar to a migrane but not quite as bad. They have given her tylenol and will try tylenol 3 if the headache continues. At this time the plan is still to increase the Remodulin in the morning.
Today we trained on the sterile technique of changing her dressing. Anna got to change the dressing over the catheter-totally a doable thing at home. Stephanie (our trainer) will not be going to GJ tomorrow as anticipated, instead she will be coming next friday to work with Anna and I again on the dressing change. She is however, sending 3 boxes full of supplies (a months worth) home with us. So, I think I will need a Uhaul trailer to get her and her stuff home:)
We miss everyone at home. It has been a very busy, life changing week and now we are anxious to mix it in with normal everyday living. We will return to CU Med Center in 2-3 months at which time they will let us know if the Remodulin is working (but we will probably know before that). They have some oral drugs they can add to the mix, we could switch to the Flolan, and/or they may decide it is time to consider the options of a transplant. But we will cross that bridge in a couple of months.
Tonight is an emotional night for me, I had the first of the "momma bear" reactions. Anna may be 25, but I guess to me she will always be my baby. Seeing her with the headache, hearing the ill-informed nurse say it wasn't a side effect of Remodulin, I almost lost it. But...stubborness prevailed, I got the handbook out and showed him it WAS a side effect (listed as number one) and that he needed to note that. He tried to talk his way out of it, but agreed to call Dr. Bull. So, I'll bob my head and say "Hum, don't mess with me". I'm sure this is the first of many times I will need to be assertive and stand my ground.
Please know that we feel your prayers and love and look forwarding to see each and everyone of you when we return home.

Lookin' Good

Things are looking good. Just had a visit from Dr. Badesch (the top dog), he said things are looking very good and training is going well. We will get to go home tomorrow!!
Yesterday was a great day for Anna, the Bunce's came to visit. The kids have gotten so big; Kiki is doing well, Xena is Anna in blonde hair, and Jamie is such a young man! It brightened Anna's day and lifted her spirits.

Training with Stephanie will continue today with emphasis on changing the dressing and hub and showering. The day's of bathing are over, Anna will be limited to showers from here on out. There is a water resistant dressing that she will be using along with...Press n Seal (developed here at the CU Med Center). Tami made some purchases for us yesterday that Anna has to have upon arrival at the house, thank you Tami very much!! The next purchase we have to make is a bath scale. I know, I said I would never own one, but Anna will have to weigh herself every morning; if her weight increases by 3-5 pounds in a day she has to go to the doctor (it means fluid retention).
It is a little scary to think of everything we now have to do with the pump and catheter, but truly amazing when you think of the support team we now have. There are less than 10,000 people nation wide who are on the medication Remodulin and only about 3 current patients here at CU Med Center. We will do an inservice with the EMT's when we get home to insure anyone who may respond to an emergency call for Anna is onboard with the procedures that need to be followed. The number one emergency treatment for her will be to NEVER STOP THE PUMP.
When you all visit our home you will note procedures you will have to follow prior to entering the front door. But, we will go over those later.
The sky in Denver is a beautiful clear blue, the view of the foothills is great, but the smog in the Fort Collins area is sad; glad we don't live there!
Have an awesome day, we will.

Good Morning!!

We have made it through the night! Mom slept well. I was tested and talked to every few hours, so of course I am still tired! It is necessary, just irritating. The catheter is good, it is tender and itches a little, but nothing big. The medicine is going well. we doubled the dose yesterday because I wasn't feeling anything. I am now pink in the cheeks!! (Called flushing) I will work on getting pictures up here in a bit. Right now I am going to get dressed, ok... brush my teeth and hair. I don't get to shower yet.

The room is indeed wonderful. We are on the 9th floor, and have a beautiful view to the north. It is sunny here, and the room is a bit chilly. So thank you very much for the wonderful robe Aunt Kathy and Uncle Bill!! It is great!!

I get to see Xena, Kiki, Jamie, Antoinette, and James today! I am very excited!

I have finished reading my book on PH, so I don't have a lot of information right now. Just info on this process. If you have any questions, please ask!! I will answer.

The food is good!

Room 907

We have finally been moved from the "holding cell" into a permanent room. It is about 3 times the size of the rooms at St. Mary's with a sofa (that folds out into a bed for me:)), chairs, etc. We have had our first of many trainings with the Remodulin nurse (Stephanie from California) and man am I overwhelmed. Anna did a great job as to be expected, I didn't do so well-it must be the age:) She said we have 2 more hours tonight!! They have already done an EKG, ultrasound on her heart and the 39th medical history and we've only been in the room for an hour.
Must go, it's mine turn to practice again.

And we're done with that!

So the procedure is done! It was very fast, about 30 beginning to end! It doesn't hurt. I am sleepy. We are waiting on a room now, so the medicine has not been started. Soon they say.

Going in.

So I have about 20 minutes until we have to leave. Mom is getting breakfast (you know I STILL have never eaten the breakfast here and we have stayed here 3 times!!). I went to bed pretty good. Took some tylenol pm, a shower, and snuggled in. Fell asleep pretty fast too. Woke up at 330, ready to go. Grrr!! So You can say I am angsty to do it. I am comfortable and confident, just ready to do it.

Yesterdays ride couldn't have been better, really. And Central City is so cute!! I want to go back when I am well and take pictures. Blackhawk is nothing but casinos... worse than Vegas! It was great, enclosed, big, fun. Mom and I did pretty good once we found out $.25 poker and Monopoly slots. We just don't get the others. And the buffet was great!! Lots of butter! I had tilapia in butter, with breaded shrimp, penne pasta in butter, and mshed potatoes in butter! Then cheesecake for dessert. Mom had crab legs. She said they were good.

Well, I am off. I will be looking forward to posting again! Love you all!!

DENVER

We have arrived in Denver!
The trip was great, roads were dry all the way. We stopped at Black Hawk, had dinner and played a little slots; Anna won $17! Anna is nervous, as to be expected, but we both have faith that the procedure will go as scheduled tomorrow with no complications.
God Bless! Joyce

Leaving tomorrow.

Well, I am mostly packed for this trip. And it is so weird to pack to go to the hospital. You don't take clothes, food, or essentials like that... you take toys! And slippers. I have books, comics, origami, knitting, coloring, reading, and my DS. I have my snacks for the trip, and pajamas for the hotel the night before. Now I have to find a way to go to sleep. Oh yes, Mom tells me we are going to Blackhawk on the way!! I have never been there! Maybe I can win some money!!

Would you like me to tell you what I have learned about the cost of this medication? I knew you did. In 2004, and only the medicine (that means not the hospital, the implant, the pump, supplies, or the nurse, no infections, no emergencies) costs between $10,000 and $20,000 depending on the dose EACH MONTH!!!!! OMG!

My nurse, Carrie Z, sent me a copy of the 3rd Edition Pulmonary Hypertension: A Patient's Survival Guide. It is a wonderful book! If you have $20 laying around and you are interested in this, medicine in general, or know anyone with this disease... I highly recommend reading this book. The amount of information is astounding!

And I have been so blessed. I mean it. I have found out that I touch people way more than I thought I did. So many people are pulling and praying, thinking, hoping, and loving me and for me. I have received a prayer quilt from my uncle and his church in New Mexico. Maggie Childers made me a prayer shawl, and all of the people at my mom's work prayed in it, and some past teachers and such too. It was taken to my church, Covenant Pres, where my pastor blessed it and myself and asked for all kinds of good stuff. My aunt and uncle from South Dakota gave me numerous things to stay comfy and warm, and a beautiful rosary. I have never had one, so that is a first! I have a picture of my sister and her family to set by me, and an angel and a rock of courage from Carson's parents. I think I am forgetting something, but I am not sure! I will be surrounded by those that I love, and who love me. So a big, BIG thank you to all who are out there praying, and loving, caring, thinking, and pulling for me, and thank you for all the momentos.

The weather forcast says that it is supposed to be a little snowy towards Denver... duh, it's winter. We are expecting to be there until Friday at the earliest. Mom said she will be taking Kissy's digital camera, so we should be able to post pictures up here. But at Kristine's request.. no "gross" ones.

Welcome one and all!

Hello!! Rather than texting, emailing, and calling everyone individually, Mom and I are doing a blog to update people on this new procedure. I hope to find a way for you to be able to leave me messages on this site, but if that doesn't happen, email me at bower.anna@gmail.com .

I am going to assume that if you are visiting this site, you know what is going on with me. I have a severe form of Pulmonary Hypertension. I am headed to Denver on Feb 16 to have a subclavian central venous catheter inserted. Here is a video of the procedure. And this is a written explanation of the procedure. I will be at the University of Colorado Hospital in Denver for 3-5 days. When I get back home I will have a nurse come to my house and help create a sterile place for me to mix and change my medicines. The catheter that will be inserted will be carrying Remodulin.

The hope is that with this drug, my hypertension will subside a bit. The doctors are hopeful that it will work, and say it will talk about 3 months to know for sure. If needed, they will add to the arsenal oral drugs (like Viagra!) to open capillaries. Then, if that is not working, we will try another iv medication, Flolan. Now, with the Remodulin, my life expectancy becomes 6-8 years. As I am now, it is expected that I live only 2. So this is a major improvement, even if it doesn't seem that way. The Doctors in Denver have also said that I am a candidate for a lung, or heart.lung transplant, but that is several years down the road.

Now many are going to ask, "Ok, but ... how are you doing?" I am doing well. I have great support from all of my family, and I am surrounded by those that love and care for me. So many people have done so much, and I can never thank them enough. If you are looking for a way to help, first and formost is just caring. Then of course there are outrageous medical bills, and I currently have no source of income. I am not asking for anyone to help, just letting those that can know it is an option.

Well, I am off to bed for tonight. My Dad is in town until Sunday morning! And I have an aunt and uncle comming as well! The plan is to leave for Denver Monday afternoon, stay at a hotel in Aurora, and be ready for my procedure at 9am on Tuesday. Barring any FURTHER complications or issues with insurance, we are set. But let me tell you.... this system is NOT set up to help anyone in our middle class! Changes have GOT to be made. We are killing too many people because of this DAMN insurance crap, and too many poor people have no one to fight for them. I am so lucky to have to people around me that I do. Sondra, Carrie, Dr Bull, and Dr Risbano are angels. There, I have my Chihuaua back in it's cage... grrrrr.