Monday, September 15, 2014

Chili Cheese Potatoes

Probably the only good thing about having Cystic Fibrosis is the amount of calories we have to consume everyday. The amount of weight we lose when we can't make our calorie quota, is not so good. I have worked hard trying to find that balance. I can get away with eating three servings of pasta for dinner on a daily basis. While this recipe is not pasta related, it's definitely tasty. Non CFers can enjoy this dish too, but as a side or appetizer during a game. CFers, enjoy as much as you want!



Chili Cheese Potatoes

6 Red Potatoes, scrubbed and sliced
1-15oz Can Chili (any kind you like, better if it's homemade)
1 Tablespoon Taco Seasoning
1 Tablespoon Cooking Oil
Water
1 Cup Cheese

Slice the potatoes however you like. For this article, I sliced them thinly. Usually, I prefer wedges. Toss the potatoes and taco seasoning together.  Heat the oil in a pan over medium-high heat. 

Add the potatoes. Cook the potatoes. Add water to prevent the potatoes from burning. Stir regularly. Once potatoes are cooked (can be pierced with a fork) add in the chili. Cook until the  chili is heated through. Turn off the heat and add the cheese. Stir to mix the cheese in. Serve with more cheese spread on top. 



Tuesday, June 17, 2014

A Patient's View On Rejection

I've been MIA for the past few months. After my last posting, doctors found rejection in my lungs. It's been a stubborn bout of rejection. The first time they discovered it, I had A2 rejection and was given high dose steroids. The second time the rejection was found, it had gone down to A1 so the doctors let it be. The third time it had jumped to A3 rejection, so I was hit with high dose steroids again. The fourth time the rejection had gone down to A2. Since rejection had been found four times in a row, the doctors decided to do something more drastic. They sent me to the hospital and gave me ATG (also known as the Rabbit).

The steriod rounds were exhausting. I would get admitted for three days. Each of those three days, I would receive 500mg of solumedrol (IV version of prednisone). That stuff is not fun. I wound up with severe insomnia. I felt exhausted but couldn't sleep. And TV was horrible, so I couldn't use that to keep me occupied. I got irritated with a doctor because he came in early one morning and realized I had been up all night knitting.  His response was, "At least you're keeping yourself busy." It took a lot of self control to not blow up at him. 

The high dose steriods also messed with my taste buds. For the first couple of hours after receiving an infusion food would taste bitter. The first time it happened, I hadn't been warned about the change in taste and I drink some milk. It tasted like it was spoiled. I thought that I had been given spoiled milk. When I tasted water, it was so bitter I had to force myself to drink it. I finally went online and read about other people's experience with high dose steriods. There I learned about the change in taste. Some patients even warned to wait two hours after finishing an infusion before eating anything. Was definitely good advice.

The other issue I noticed with the high dose steriods was that my anxiety went through the roof. I couldn't handle more than a couple of people at a time in my room. That made it hard since the transplant team is like a mini mob, all wanting to come in my room at the same time. I wanted to scream. I'm sure the severe lack of sleep did not help my situation any.

My latest hospital trip lasted 10 days. It was pretty hard, both physically and mentally. Since I had shown rejection four times in a row, the doctors brought me in to treat me with a heavy hitter. It was called Antithymocyte Globulin Rabbit (ATG or Rabbit). Because of having Cystic Fibrosis, I have taken some harsh medications. None have ever knocked me on my rear like ATG did. The first dose made me tired, and fuzzy brained. SB said I sounded drunk. I had trouble focusing. I had a horrible headache. My right sinus swelled up, and the right side of my body got really sore. I felt as if all my energy had been sucked out. Something as simple as getting up to use the bathroom felt exhausting. The following day, I felt like I had the the flu. I had a slight fever, a headache, fatigue, and achiness all over. I felt miserable. 

The way they did the ATG was a six hour infusion one day and then a day break. I had four treatments over ten days. At one point I got a two day break because my kidneys pitchecd a fit. Don't blame them. 

ATG works by attacking the T-cells in the body. T-cells are the body's soldier cells. By attacking them, the immune system is being attacked. The idea is to destroy the immune system and then let it rebuild, hopefully the transplanted organ stops being attacked by the new T-cells. We will see if it works. The treatment left me worn out. I've been home a week and still don't feel like I've had enough rest. I have to be extra cautious about my exposure to germs. So it's extra santizing, and wearing my mask more often. Also avoiding large crowds. That part has been hard because How To Train Your Dragon 2 is in theaters right now and I really want to see it. 

And to top off all the medical issues, SB was hit by a car on his way home from work. He was on his bike and someone ran a red light. He survived, just dealing with getting himself checked out. He's on medical leave from work. His bike is a mangled mess. Bills from that are mounting. And his not being able to work makes it hard for him to pay his rent or buy food. 

So between my constant Stanford visits and SB's accident, we haven't had time to stop for a breath. I keep hoping things will calm down soon. Both of us need a vacation.

To say it has been a roller coaster is an understatment. Going in and out of the hospital makes it hard to do normal things like find a job or spending time with friends.

Please donate $2.24 to help with continued transplant expenses.


Monday, February 24, 2014

First Lung-iversary

I have made it to my first Lung-iversary. Let the celebrating begin. Of course I'm celebrating by having a bronchoscopy . There's no other way to celebrate a huge milestone like being sedated and having a tube shoved down your throat.

Seriously, though I am very thankful. I'm thankful to my donor and his/her family for making such a gift. I am thankful to everyone who provided support financially, spiritually, emotionally, and  physically.

As a special thank you, I've posted some pictures of my past year.  Without your support it would not have been possible.

Day I received news about being listed.


Just got the call. Posing before my helicopter ride

Out of surgery. In the ICU
Smiling for the camera.
 

There be vampires in the hospital
First walk.
First day out of the hospital. 75 lbs.

First day of rehab.
Bane's daughter
Finally got my black mask.
Enjoying the outdoors.

Trying out my new phone.
Month out 93 lbs.
Needed day trip to the ocean.


Outing in Chico
Look who was waiting for me outside of rehab.


First hike. Mick and I owned that rock.

Someone wants my Boost shake.
Morning cocktail.
Getting some smooches.


My swollen ankles.
Break from appointments to visit the beach.

Sinus surgery AKA nose job.


Snuggling with a new puppy makes everything better.
Blood clots removed from nose.
 

Mick meets Leia for the first time.
Becoming buddies.


Hanging out at the infusion center.
Ocean break.


Another wait at the infusion center.
Walking the dogs across the Sundial Bridge.


I am Wonder Woman!
My new nephew.
My new niece


Getting a milkshake after a day at the infusion center
Mick and I taking a break from hiking.
SB and I at the creek.


Getting a picture of my eyes.
Valentine's Day at Treasure Island.
I hope you've enjoyed a look back at my first year post transplant. I would love to be celebrating again next year, but I can't do that without your continued support. As my lung-iversary is on February 24, I am asking for a humble donation of $2.24 to help with continued transplant expenses.









Saturday, August 10, 2013

Bumpy Ride Part 3

The transplant ward was quite nice. I was place in a private room right by the Nurses Station. I was still in a lot of pain. The nurses seemed to know what they were doing though. They were used to dealing with transplant patients so none of my issues were new to them. 

I was still in a lot of pain. And I didn't have the strength to walk on my own. I couldn't even walk to the bathroom. 

The beds in the transplant ward caused me some issues. They were not designed for someone under five feet. The nurse would have to help me scoot to the edge of the bed and then help me "jump" down. They didn't have any steeping stools for me to use. Since I so light, we ended up using a garbage can as a stool. 

I wish I could say, I did a lot of resting but the doctors were pretty much shoving me out of bed the moment I woke from surgery. Just to get them to stop nagging I tried standing (with a nurse holding my hands). I almost passed out. My legs were so weak. It was like I had no muscle left. I pretty much didn't. I weighed less than 75 lbs. 

On the ward I would try to walk little bits. Sometimes, just to get to the commode was exhausting. I had very limited mobility with my arms so I needed a lot of help from the nurses. 

I was also very thirsty and very hungry. I gnawed on ice a lot. I wasn't allowed to eat or drink until a swallowing specialist cleared me. It took a couple of attempts before I was allowed to eat solid food. 

The pain seemed to go on forever. I couldn't a get comfortable enough to sleep. And when Imdid reach a point when the pain seemed bearable, the doctors old switch up my meds and I had to start all over. Sometimes the pain would be so bad I was in tears. One night I called SB at would because I was in so much pain. I needed a distraction. 

I was averaging about 3 hours of sleep per day.

The high doses of steroids didn't help much either. I had a hard time falling asleep and then I couldn't stay asleep. Most nights I'd wake up in a panic and couldn't go back to sleep. It got so bad that the doctors put me on melatonin to help me fall asleep and Xanax to help with the anxiety. 

During the day, I had a different set of problems. I've always been claustaphobic when it comes to masks and here I needed to wear a mask every time I left my room. It was torture. The nurses were really patient with me. They would hook me up to a pulse ox and show me that my levels were fine. They also let me lug my teddy bear around (a gift from SB). I'm sure they've seen more unusual things than a 31 year old carrying a teddy bear everywhere. 

Because of the surgery and my limited mobility and having gone through surgery, the doctors order Heparin shots three times daily. To say these shots hurt is an understatement. It was like being injected with liquid fire. The stuff burned. I just wanted to scream. A couple of times I did. The nurses felt bad every time they had to give me the shot. 

Friday, June 21, 2013

Go Smoothly Smoothie

Back in October, I wrote about constipation in The C Word.  Transplant meds seem to have made the problem worse. And there doesn't seem to be a happy balance. If I take one dose of Miralax, I get stopped up. If I take two doses, then I'm in the bathroom making unworldly sounds. 

It's a tough job trying to find that balance. I finally got so frustrated with being at one extreme or the other.  I think it had to do with the transplant team telling me that I just have to experiment with the Miralax to find the right amount to take. So instead of taking 2 doses try 1 1/2. Well 1 1/2 was still too little and 1 3/4 had me back in the bathroom making those noises. It had gotten to the point where SB was calling me his "Little Bathroom Lady". So, I gave up the battle with Miralax and decided to take things into my own hands. 

So far this smoothie seems to be working. I'm not feeling stopped up. And it doesn't sound like an exorcism when I'm in the bathroom. 

Ingredients:

1 Apple cored and cut into chunks (use any type you like)
1 Banana (even better if roasted)
10 Blackberries
10 Raspberries
10 Blueberries
5 Strawberries, hulled and halved
Juice of 1 Orange (I use naval)
1/4 cup Plain Yogurt with live cultures
1 scoop Miralax

Put all ingredients in blender and blend until smooth. 

Notes: 

Can add juice of 1 lemon and 1 lime for a more citrus flavor. 

Saturday, April 27, 2013

Bumpy Ride Part 2

In the operating room, I was lifted to a metal table.  They covered me with blankets.  My port was already access before I had flown to Stanford and the surgeons were talking about using it.  I remember thinking that something must be wrong with me because I wasn't afraid, not even worried.  I was completely calm.  A nurse put some warm blankets on me.  I was given something through my port.

The next thing I knew was someone was trying to wake me from a good dream (I can't remember the dream now, just that it was good).  I didn't want to wake up because I wanted to finish my dream.  I heard a voice say that it was after noon and that the surgery was a success.  I thought, "What surgery?"  I had completely forgotten that I had gone in for a transplant.  It took a while for my drugged brain to put things together and realize that I had just gone through transplant surgery.

I heard my mom ask if I knew who she was.  I nodded what I thought to be a strong nod (my mom says I barely moved my head).  I could hear my sister's voice in the background telling me she was right there.  I couldn't open my eyes to look around.  I did manage strong hand squeezes to questions, but that was the most of my moving capability.

I was still on the vent. The nurse told me I needed to stay calm and not fight it, that the vent was helping me breathe.

My mom and sister left to get some sleep (they had stayed up all night waiting for me to get out of surgery). SB came in to keep me company. He joked and kept me calm the rest of the time I was on the vent. I was so glad when they finally took me off the vent. The nurse had me cough while he pulled out the tube. I tried talking, but my voice couldn't even whisper.

The nurse was awesome. He kept explaining to SB what he was doing and why. I kept trying to pay attention, but was still tired and would doze off.

The ICU was pretty nice. I had a glass room with a sliding door. A nurse was by my side at all times, constantly watching monitors and making adjustments to my IVs. I wish I could remember the names of the nurses there.

They tried to keep me well medicated. Some of the meds had weird side effects. At one point I was trying to show SB where "glowing purple flowers" were. At another time I had to keep my eyes closed, because if I opened them everything seemed to be wobbling.

The surgeons came in to check on things. They let me know that things went really well, and that they couldn't have found a more perfect fit. I just kept saying, "Thank you." They might have gotten sick of me thanking them so much.

Unfortunately, I was in quite a bit of pain. To say I felt like I had been hit by a MAC truck would be an understatement. I felt like I had been hit then backed over and then run over again. Loki getting treated like a rag doll by the Hulk is nothing compared to how I felt.

The transplant doctors didn't seen to want patients to get rest after surgery. I was still in the ICU and they were wanting me to get out of bed and try walking. I did try, but it was definitely a failed attempt. I didn't have strength to stand. The nurse had to hold me up so I wouldn't pass out.

I also wasn't allowed to eat yet. I had to see a swallowing specialist and get cleared. The specialist wasn't ready to risk me choking on anything so I was only allowed to have ice chips and suck on these lemon flavored Q-tip things. When you are so thirsty and hungry, those Q-tips are like chocolate.

Physical Therapy and Occupational Therapy came in to see me and give me tips on ways to move and dress so I wouldn't hurt myself. I received a bunch of rules about sternal precautions. Most of which, I knew I wouldn't remember so I did ask them to give me a sheet with the precautions written down.

I spent a few days in the ICU before they transferred me to the transplant ward.



Friday, April 12, 2013

Transplant Log

This entry is an ongoing work. Instead of putting short blog entries for quick updates, I'll add to this entry. The most recent updates are at the top. Please keep checking back.

July 18, 2013

Good appointment at the transplant center. Have a lung function of 88%. So excited. Have to have my first ever sinus surgery though. Not looking forward to it. 

July 14, 2013

SB took me out on a birthday picnic. Nice way to celebrate. Being outside with nachos from La Cocina. Looking forward to more birthdays. 

July 13, 2013

First birthday with my new lungs!!!

June 21, 2013

SB and I went on a much needed date. We went to see Man of Steel. It was AWESOME!  

June 20, 2013

Got my butt handed to me in Pulmonary Rehab. My incline was upped to 2.5%. My legs are feeling it. Planning on letting my body rest tomorrow.  

June 16, 2013

Happy Father's Day!  I spent the day with SB, picking blackberries. Nice to be able to enjoy blackberry picking again. 

June 14, 2014

An article about my dad and me is on Yahoo News. I'm having trouble with copying the link.  Do a search for Newfound Dad.

June 13, 2013

One more month till my birthday. At Stanford still. Cytogam infusion. Blood sugar dropped to 47. I think I did too much walking. At least I'm already at the hospital. When I told SB what my levels where, he shoved a spoonful of eggs and sausage in my mouth. I'm going to feel drained for the rest of the day.  I didn't even feel this coming on. I just suddenly felt like I was starving. Like "Give me food, or I'll gnaw your arm off" staving. 

June 12, 2013

Time for an Aredia infusion. Mostly tired from the ride here. Can't wait for the infusion to be over with so I can take a much needed nap.

June 8, 2013

Per doctor's permission, I attended my Bible Study's 5K. It was great seeing everyone again. Most I hadn't seen since our annual Christmas party. I was nervous since I still have to keep the mask on. I get mixed reactions. 

June 6, 2013

Sternal Precautions have been lifted! I still have to be careful, but now I get to work out these flabby abs. I now weigh a hefty 94lbs. I am finally in my healthy range. I haven't been at this level in a few years. Long day. Saw the endocrinologist as well. My A1c results haven't come in yet, but she seemed happy with how my sugars are being controlled. And in other good news, they didn't find any rejection in my bronchoscopy. So the rejection I had seems to have cleared up. Thanks for all the prayers. 

May 23, 2013

Cytogam today. Way too early to be getting up. I find it funny that they call the infusion center the ATIC, when its more like the belly of the hospital. Don't get me wrong, the staff if great.  So far it seems that I get reception anywhere else in the hospital but the ATIC. This day will end with me being a groggy mess. Thankfully, SB is here to keep me in line.

May 22, 2013

Bronchoscopy seems to have gone well. I woke up towards the end and felt an odd pinching feeling from the inside. That was where they took one of the samples. There was some irritation in my throat tissue so the doctors cleaned it up and took a sample just in case. Mostly just starving. Coughing up some blood, but that's normal. Now it's the waiting game for the results. 

May 20, 2013

SB is officially on vacation. Unfortunately, part of it will be spent with me getting my second Bronch and a Cytogam infusion at Stanford. 

May 16, 2013

Started Pulmonary Rehab again. Different than the one at Sequoa, but the therapists are nice. One even worked with SB's mother back in the day. 

May 1, 2013

Had an EPIC date with SB. This was months in planning. Definitely glad to be home.

April 30, 2013

I'm officially home!

April 26, 2013

Some good news today. I get to go home on Tuesday! Still have to come out to Stanford for appointments, but I am well enough to finish recovery in my own home. My lung function is up to 68%, which is a huge improvement from less than 20%. I also made it up to a pace of 1.7 mph in rehab yesterday. So things are looking good. I'll find out if the rejection is going down at the end of May.

April 24, 2013

So doctors want to wait till May 10 to see if my rejection clears up before sending me home. And with all my walking, I have shin splints. So I get to ice my shins and find special inserts for my shoes. Haven't had to worry about sports' injuries in years :o) 

 
April 12, 2013



Got the results to the bronchscopy. There's minimal rejection. Doctor said it's normal and will most likely clear up on its own. Will check again in May. At least it's early enough to begin treatment if needed. On a good note: if I keep at this rate of improvement, I'll get to go home at the end of the month. That's two months earlier than planned. Keep up the prayers everyone. They're helping.



April 11, 2013



Bronchscopy went well. Waiting to hear what the results are.



April 11, 2013



Had a great day at Pulmonary Rehab. Hit a pace of 1.5 mph on the treadmill and maintained 98% oxygen. All this over a 28 minute time span. Pretty exciting.



April 09, 2013



Have my first bronchscopy tomorrow. That's where surgeons take a sample of cells from my lungs to check for early signs of rejection. Please pray that everything goes well.



March 25, 2013



First day at rehab. It was great. I got to use the treadmill. Fifteen minutes and still 100% oxygen. In the words of my old room mate, "Woot, Woot."



March 22, 2013



Goodbyes are always hard. After having a great four day visit with SB, he had to go home. Can't wait for his next visit.



March 15, 2013



Survived my first couple of days in Patient Housing. I'll be here for the next few months (Redwood City). Actually, it's great to be out of the hospital. Eating my fill of Macaroni and Cheese. First clinic appointment was today and doctors say I'm doing great. Just need to eat more protein to help with the healing. Any excuse to eat more meat. Missing everyone back home.



March 13, 2013



Finally out and in patient housing.



March 13, 2013



I get to leave the hospital today.



March 12, 2013



Just got my final chest tube out!



March 12, 2013



I might get to go to patient housing in the next couple of days. Just waiting on word from the surgeon and when I can finish my training.



March 11, 2013



Some possible good news. If things go well tonight (air pocket not getting bigger and draining continues to slow down) my final chest tube will be removed tomorrow. Praying for it to go well.



March 09, 2013


Had a much better day. Slept all night. Still working on the pain. Still dealing with side effects from the meds. Doctors are leaving the chest tube in for a couple more days to see if that will handle the air pocket. If that doesn't work they'll try something else. I'm hoping the tube will work. The more that doctors have to do, the longer my hospital stay. I am gaining strength though. Got a foot petal to work out with when I'm in the room. Still trying to get used to wearing a respirator. Another good note: my right side has healed enough that the dressing was removed today. Prayers for continued healing and another good day tomorrow. Thanks everyone.



March 08, 2013

Had a few tough days. Was getting short of breath. Doctors found out that I have an air pocket preventing me from expanding my left lung. Good news is that my last chest tube is in that lung so I don't have to go through the pain of having one put in. They're using it to force the lung to expand. Prayers for healing would be appreciated. I'm also experiencing some unpleasant side effects from the meds. So prayers for strength and peace during this time are definitely needed. On a good note, my appetite is slowly increasing. I look forward to my daily walks. Been keeping up with my therapies. Looking forward to being well enough for patient housing. Thanks to everyone for their prayers.



March 05, 2013

Monday was a bit harsh. I woke up with a dry cough and tightness in my chest. The good news is that we seem to have found a way to control the pain. And even though I was coughing a lot, my oxygen levels remained perfect. There's no infection. Today I am much better. Already had my first walk. The coughing has settled. I am sleeping at night. So even though there's been a set back, I'm still improving. Alicia has been able to settle in the transplant housing. It's a blessing that something became available so soon. Continue the support and prayers.



March 03, 2013



They pulled out the final neck catheter last night! And the doctor gave me a little something for sleep. Got more rest last night than I have in the last week. Still tired but it's expected. And we are shooting for two walks today. Pain is starting to be managed. Still need sugar levels to get under control and my legs to stop swelling. But we are making progress. Thank you for all the well wishes and prayers.



March 02, 2013



Posted by SB:

A Solana update: For those of you who don't know yet, Solana has been moved into the unit that is a step-down from the ICU. She has been recovering by leaps and bounds and is already walking around as part of her physical therapy! Her main focus right now is pain management and lung exercises. Thank you, everyone, for your thoughts, prayers, and love over the past week. It has meant so much to Solana and I as she is recovering!



March 01, 2013



I want to thank everyone for their prayers. There's still a long trek ahead, but doctors are happy with my progress. Right now we are working on pain management and mobility. Now that I am out of ICU, I can answer messages directly. Please keep up with the prayers.



February 28, 2013



Posted by Sister:

Hello
Solana is still in Intermediate ICU. She is doing so well though!! The surgery took a lot out of her so she is working on building her strength back up to be able to do simple tasks on her own. Solana is moving fast! We will be able to give her room info and contact info when she is moved to the floor and has more strength. Also, we do not have an address until Sunday. When we get that I will post as well so you can send love and support that way. Thank you for your support and prayers!



February 24, 2013



Posted by SB:

Friends and family, I am happy to say that Solana is recovering swiftly and strongly! They have removed the breathing tube that was down her throat, and she is now breathing on her own with her NEW LUNGS!!! She is awake and alert, and fully coherent! Thank you all so much for your thoughts, prayers, and love. It really means a lot to Solana. Please continue praying for a full recovery!



February 24, 2013



Posted by SB:
Thank you everyone for your thoughts and prayers. The operation was a success and Solana is now recovering and breathing with her new set of lungs! The doctor says that the lungs fit great, and that there weren't any complications during the surgery. Please continue to pray for a swift recovery.
February 24, 2013

Posted by Sister: 
Here we go. Solana is officially in transplant surgery! We appreciate your thoughts, love and prayers.



February 24, 2013



Posted by SB:

Attention all family and friends: Solana is currently in the operating room for her double-lung transplant. Please keep her and her loved ones in all of your thoughts and prayers at this time. I am currently waiting down at Stanford Hospital with her family in the ICU waiting room. I will keep posting updates as they come. Thank you all for your prayers and support.



February 23, 2013



Posted by SB:
Thank you everyone for your prayers and support. Solana's surgery was scheduled to begin at 10:30pm. Please continue to pray for a successful surgery and a swift recovery. I will do my best to update you all as we receive more news.


February 23, 2013



Prayers everyone. I just got the call. Stanford is sending a transport as I type this.