Get Activated on Activase

Doesn’t that sound like a really cool infomercial?  Problems with keeping yourself active?  Get activated on Activase!  Only 3 easy payments of 37.99, that’s ONLY 3 payments of under 40.00.

I had the distinct opportunity to try out this amazing product.  As the home health nurse put it “it’s like a roto-rooter for your port!”  Well how can you miss with that?  The bright side....I’m done with iv’s for now (insert a happy dance here).  So, we decided to take the opportunity while the port was still accessed to try and see if we could get it working again.  The doc was also concerned about a possible blood clot so this should dissolve anything like that.  Stay tuned to hear the results of getting activated on Activase. :-)

(p.s. it worked!  we left it in overnite and we able to get a blood return the next morning.  whohoooo!)

Hi, my name is Tiffany and I need medication!

As an adult living with Cystic Fibrosis one of the realities is that there is no cure.  So, we are actively trying to manage symptoms.  As a result, I am on quite a bit of maintenance medication. Let me clearly say that I am thankful for the science, research, and development that goes into medications.  Without them, I would not be able to have the quality of life that I enjoy. 

(I don’t want to post this without the following disclaimer: Always consult your medical specialist or CF Doc when determining which course of cystic fibrosis treatment is best for you or your loved ones.)

Inhalers

Alvesco

Foradil

Nebulized Meds

Xopenex

Ipatropium

Hyper-Sal

Pulmicort

Pulmozyme

Colistin

(adding Cayston as soon as done w/ this round of IV’s)

Oral Meds

Creon 24

Singular

Ramipril

Prilosec

Prednisone (as needed)

Itraconazole (antifungal-hopefully only on this a couple of months)

Bactrim (as needed)

Cipro (as needed)

Diabetes Meds

Humalog

Sinus Meds

Saline wash

Gentamycin wash

Nasonex

IV Meds (as needed)

Cipro

Merrem

Imipenem

Tobramycin

Zyvox

Vanco

Vitamins

Calcium

D3

B

SourceCF 

NAC

(Once again, the disclaimer: Always consult your medical specialist or CF Doc when determining which course of cystic fibrosis treatment is best for you or your loved ones. )

Interesting Thought

Yesterday morning I was struck with an interesting perspective.  I had mentioned earlier that Piper (a fellow CFer) had recently undergone a double lung transplant.  She is doing well and Lord-willing will be out of the hospital by the end of the week. 

The thought that struck me was this; it would be cool to have a major, major surgery (such as a lung transplant) and wake up from that feeling better than going in.  As I read about Piper’s experiences and being at 96% ox sat, enjoying 100% room air (no O2 needed), and not growing anything in her lungs....wow!

(ok, a total shift in topic here, but isn’t that how the Holy Spirit does His work in us-when He pinpoints an area that needs changing and provides the means to change we then experience His transforming grace)

Ah...the joys of a port

Due to the reality that I am on IV’s several months out of each year, I had a central line put in.  This is commonly referred to as a port.  For the most part, ports are pretty low-key.  It makes treating an exacerbation easier, quicker, and often provides for more medication options.  However, there are some complications that can arise.  Yes, that’s right-complications.

When the port is accessed one of the ways to confirm that it is still working properly is to get a blood return out of the line.  This shows that everything is open and ready to go.  Well, the past couple of days I have been unable to get a blood return.  This could mean several things.

*a muscle is kinking the line (which I have had issues with in the past)

*it has shifted positions

*there is a clot in the line and when you try to pull back the suction causes the line to enclose around the clot

*there is some fibrous growth over the end that inhibits the blood from coming back through

There are a variety of approaches to this. There is a med that you can flush the line with to clean it out-gets rid of the clot and/or fibrous stuff.  Sometimes they will try to get a picture of the line-through ultrasound or a contrast dye MRI to look for any clots that could be serious (DVT or deep vein thrombosis).  Actually replacing the line. 

After re-accessing the port again this afternoon, we still were not able to get a blood return.  The home healthcare nurse is confident that the line is still viable.  It flushes fine and you can hear it going through the line. My doc feels that the problem is positional, so as of now, we are going to continue IV meds with an eye out for the following (which indicate a more serious issue)...

*drastic swelling on the side of the port

*very tender/pain near the line

*warm to touch

*redness

So, now to go get hooked up.

Friday Fill-in

1.     this made me laugh this week (Barbie at 50)

2.     whoohoo for garage door openers

3.     getting into a fresh coconut is interesting-not sure if it’s worth the work :-D

4.     Piper, a fellow CFer, got a new pair of lungs this week....have you considered 

being an organ donor   (Donate Life)

Faithful to His Promises

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

     Here is the verse for this week.

Psalm 145:13b

“The Lord is faithful in all his words
and kind in all his works.”

Friday Fill-in

1. I just want to say a huge congrats to my dad and mom-they are celebrating their 38th....how awesome is that!
2. My dog standing in front of our fan with her fur waving in the wind makes me smile
3. Boy, I sure enjoy reading and I think DH is sure thankful for a library card and free e-books :-)
4. I have been reminded anew at how amazing is His grace
5. I love music 

Clinic Visit

Early, early, early (ok 8:30 :-) this morning I had another clinic visit to see if we are headed in the right direction with current treatment.  Whohoo, my PFT’s were up!  I think all of us sighed in relief.  It seems as if things are headed in the right direction.  So, at least a couple more weeks of meds and then the goal of trying to keep my numbers up.  

We are also doing a lot w/ diet in order to get on top of the fungal infection.  [funny note; in the Doc’s notes from last visit it has that I have a “pasta” fungal infection....hmmm, resist the urge for jokes and smart comments ;-)] Ok, back to diet.  In the past I have had great success w/ what many would refer to as a candida elimination diet-basically, no sugar, no caffeine, tons of fresh fruits, veggies, grains, etc.  I keep reminding myself that it is worth the focus and work in order to help my body get on top of this.  Plus, I believe that it is a good example of stewardship.

Thanks to those who have been praying-you can see how the Lord is answering specifically. We will keep on keeping on.

Practically Relevant

DH and I watched a movie last nite that reminded me about the importance of being involved in clinical trials.  The movie was about a dad who was determined to do all he could for his children who suffered from an incurable genetic disease.

As CFers we have an unique opportunity, responsibility, privilege to affect the future of fellow CFers.  Your participation in clinical trials/studies directly influences new treatments and therapies that can improve the quality and length of life for other CFers. 

Take advantage of this opportunity to change someone’s life.  For more information, please go here  http://www.cff.org:80/research/ClinicalResearch/.

Faithful to His Promises

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

     Here is the verse for this week.

Ps 36:5

“Your steadfast love, O Lord, extends to the heavens, your

faithfulness to the clouds.”

The other side by DH (Dear Hubby)

Last week Tiffany and I were talking about CF and all of the people involved in the facilitating and supporting the treatment process.  We were joking around about how much her CF adds to the support of the economy.  Below is a list of the people I could think of that have jobs because of Tiffany’s CF -- maybe you can add a couple I haven’t.  Just think, without CFers the economy would be hurting more than it is today -- I am glad that we could help someone out with job security!  Here is our list (names are protected for privacy issues):

CF Center

Dr. G. -- CF primary care doctor who oversees all of the CF care.

Nurse P. -- adult CF nurse (the person who gets it all done)

Nurse B. -- peds CF nurse who is the back-up when Nurse P. is not available

Respiratory Therapist C. -- runs PFTs (Pulmonary Function Test) that help determine lung function

Respiratory Therapist R. -- tag teams with RT C.

Nurse Aides -- two different nurse aids who check Tiffany in and get all the basic numbers and ask all the annoying questions.

Receptionist of Pulmonary Department -- tell us to go back and get all our insurance info, scheduling

People in Billing

Social Worker J-- she helps us with basic info and helps most folks with basic info on social programs

Nutritionist B. -- she helps oversee the nutrition side of CF (many people don’t realize that most CFers have a hard time maintaining good weight because their body does not produce enough enzymes -- this is actually one of the main areas that is treated in CF)

Other Dr.s and providers

Dr. Mu. -- ENT doc who oversees sinus treatments and performs surgeries

Dr. Mu. nurse, assistants, and billing -- helpful team to Dr. Mu.

Dr. Ma. -- Endocrinologists that oversees diabetes treatment

Dr. Ma. nurse, assistants, and billing -- helpful team to Dr. Ma.

diabetes trainer -- did initial training on pump and available for questions

Ping salesperson -- sold us on the Ping pump

Insulin Pump supplier -- customer service people and order fillers

Johnson and Johnson developers -- they are putting a lot of money toward diabetes treatment (can’t wait till the closed loop system comes out that tests, reads, and administers insulin)

Drug Assistance folks -- these people help you with medicine assistance in either getting discounts, copay help, or free medication (I think we have 3 different programs helping us)

Hospital

Admitting personnel -- admit you and go over billing and insurance

transporters -- anytime you need to go anywhere they are there (and usually late -- we get forgotten once for 45 minutes in a hall way of the operating wing)

Dr.s and more Dr.s -- We had nine visits in one day last hospital visit, attending dr., infection dr., CF docs, psychologists (it is always interesting to watch them -- they don’t know what to do with people like us), etc. . . 

Nurses -- usually two a day (ours are pretty good usually on the floor and pod that they put all the CF patients)

Pharmacists

Respiratory Therapists - usually see one four times a day -- they do all the breathing treatments and CPT (something??? pulmonary therapy -- they pound on you or use a machine that vibrates that breaks up the mucus in the lungs)

Home Health Care

P. the pharmacist assistant

Multiple delivery people

D. the pharmacist

L. the billing person

Nurse D. -- oversees Tiffany’s care when at home

Nurse C., M., and C., -- fill in for D. especially in evenings

Testing

Blood work people

Sputum Culture people

Medicine

Development

Pharmacist M. at primary pharmacy-- our primary pharmacist who works wonders for us and is very helpful

Pharmacist assistant -- checks us out and helps Pharm. M.

CF pharmacy pharmacists

RS pharmacy  that does 3 months prescriptions

compound (mixed solutions) pharmacist

Insurance

Customer service reps

clinical and pharmacy reviewers -- people who determine whether a drug or procedure is needed

Pharmacy team -- tell you who to talk to and what your policy covers

Nurse L. -- insurance nurse that wants to help but who we don’t talk to (don’t want to muddy the waters)

Wow! This list got longer even than what I was expecting. At minimum, over 50 people a year have their job in part to help treat Tiffany’s CF and its side affects. Now, I wonder what that would look like in dollars and cents? I am sure that would be more than I think also.

Friday Fill-in

1. It has in fact been a weird week.
2. I enjoy spending time with good friends.
3. Hoops and YoYo make me smile.
4. I could really do without the three digit temps (hmmm-sensing a theme here)

Let the "fun" begin-getting hooked up

I had a last minute visit at the clinic today.  Kudos to Dr. Gong-came in before heading on vacation to deal w/ me!  Thnx CF team!

So things are still a little hairy.  It doesn’t really seem as if I am fighting something specifically, but it is very obvious that things are not getting better.  PFT’s are nearly the same as two weeks ago-good, that they aren’t down but bad that they aren’t up.  So.....we are throwing the whole “kitchen sink” at things.  Treating all the different bugs that I am growing.  We are starting aggressive IV therapy tonite.  Let the fun begin.  I told my hubby he gets the triple whammy.  A wife on Vanco (predose w/ benadryl=loopiness), Prednisone, and an antifungal-plus drugs every 8 hours.  Should be an exciting couple of weeks. :-)

Here are the meds added today;

Meropenem to treat PA: IV every 8

Description: Penicillin class. To treat infections caused by gram-negative and gram positive bacteria, and anaerobes. Used especially for pseudomonas aeruginosa and staphylococcus aureus. Injectible.

Vancomycin to treat the MRSA: IV every 8

Description: Glycopeptide class. To treat infections caused by gram-positive bacteria. Injection.

Itraconazole to treat the Aspergillus: Oral

Description: Itraconazole is an anti-fungal drug. It prevents growth of several types of fungi by preventing the fungi from producing the membranes that surround the fungal cells.