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. 

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. 

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.

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.

Bumpy Ride Part 1

Wow.  It's been a bumpy ride since my last post.  I know I posted a one liner when I got my transplant call.  I didn't give any explanations or anything.  It was pretty shocking.  When you get the call, you're literally trying to make sure you have everything together and are making phone calls to everyone to let them know what's going on.

I should start from the beginning.  On February 13, I had gotten back from Stanford for a regular follow up clinic appointment. I wasn't feeling well (trying to recover from a nasty cold).  I went to bed feeling worn out and was hoping that sleep was all I needed.  I woke up two hours later with my heart racing and feeling like I was suffocating. I checked my pulse and oxygen levels.  It was a heart rate of 157 and O2 of 86%I called 911 and they took me to the local hospital.

The local hospital wasn't equipped for dealing with trauma, much less a CF emergency.  I was complaining that my head felt funny, I was hot to the touch (but no fever), couldn't breathe, I was scared.  The worst part was nothing was being done.  The doctor hadn't come in to see me, but had ordered no water, no liquids, not even ice.  I was dying of thirst.

SB met me at the hospital, and was getting impatient when I wasn't receiving help.  I had been there for two hours and nothing had been done.  SB wound up calling my CF hospital and got some advice from the on call pulmonologist.  If you are at a hospital and you feel you are not receiving adequate medical care, you can request to be transferred to another hospital.  It is your right.

So two hours after I showed up in the emergency room, the doctor finally came to see me and said she thought it would be better if I was transferred to my CF hospital.  She had made contact with the pulmonologist there (same one who told SB to request the transfer).  I was going to be transferred by helicopter.  They gave me some Ativan to calm me down (I was freaking out over the fact I couldn't breathe).  It didn't seem to be kicking in though.

The helicopter arrived and the two nurses came in to get me ready.  They were light-hearted and did a good job keeping the mood calm.  While they did a lot of joking around, I knew they were more than capable to handle anything that might occur while we were in flight.  My mom showed up before they wheeled me out, so she was able to see me off.  I was loaded up in the helicopter and we took off.  Unfortunately, I can't say much about the ride because the Ativan decided to kick in and I fell asleep.  When I woke up we were landing on the roof of the hospital and I was being wheeled into ICU.   It was 6am on Valentine's Day when I made it to ICU. I fell back to sleep.

At some point, they determined that I was severely dehydrated and CO2 was getting trapped in my lungs.  This was making my heart work on overdrive.  They hooked me up to fluids and set me up with a high flow.  The high flow was a pretty neat set up.   It allows for a higher flow of oxygen than the normal hospital set up.  It's moisturized so the nose doesn't dry out. The higher flow can force the trapped CO2 out.  When I got set up with the high flow, my heart started to calm down.

Because I missed out on Valentine's Day, SB came to the ICU with the works.  He brought fake flowers (no real flowers or live plants allowed in the ICU), chocolates, a Teddy Bear, and Date night.  We had dinner by light saber and watched Return of the Jedi.  All the nurses thought SB was such a thoughtful guy.  I have to agree with them.  He really knows how to make a girl feel special.  Even when she's hooked up to IVs, a high flow, heart monitor, and pulse ox.

I was eventually moved to the floor.  Progress was slow.  They were trying to wean me off of the high flow.  I was working on being able to move around again without short of breath.

I had been in the hospital for nine days when my sister and I were having a Girls' Night. We were watching The Wedding Planner and I was about to dig into some Mac and Cheese. My cell rang.  I wondered who would be calling since I was low on minutes and I had told everyone to call the hospital phone.It was Stanford.  A set of lungs were available and it was a match for me.  I was in shock.  It suddenly went from my sister and I having a Girls' Night, to us trying to get things ready for Stanford.

We made calls to everyone, telling them what was happening.  It was pretty crazy.  I was trying to process the news, nurses were trying to get things prepared for my transfer, hospital staff (whom I've known forever) were dropping by to wish me luck.  I felt pretty overwhelmed.  My doctor called to wish me luck.  SB was on his way from work.

I got news that I would be transferred by helicopter.  It would be the second time in a month that I would be traveling by helicopter.  Since space would be cramped, I had to arrange for my sister to take all my stuff to Stanford.  All I would be taking were my glasses and slippers.

SB arrived at the same time as the helicopter.  We did a lot of Goodbying.  We took pictures of us (SB, my sister, and me) and did more goodbyes.  SB and my sister came along to the elevator where we did our final goodbyes.  It was hard and there were plenty of tears.

This ride I stayed awake for.  Night flights are really cool.  All the lights look like jewels on a black background.  It was pretty.  Even more beautiful when we got to the Bay Area.  There's even more lights to look at.  The trip seemed to end quickly.

I was wheeled into ICU.  The helicopter nurses wished me luck and headed out to their next assignment.  The ICU nurses got me cleaned up and ready for surgery.  At the same time they did all the admitting paperwork.  I could tell that they do this type of multitasking often.  By 12:30am on February 24, I was in the operating room.

Just got the call

Prayers everyone. I just got my transplant call.

Cabin Fever

I'm still in the hospital. Good news is: I should be going home tomorrow. While Stanford is a nice hospital, and the staff is amazing, I can't wait to go home.

I want to sleep on my own bed. Play with my dog. Curl up on the couch with SB and watch sci-fi movies. I want to get my food and not wait for a nurse to bring my enzymes and insulin.

This stay wasn't a waste of time though. Every time I start thinking that maybe I should bend and go back to having TV, the hospital reminds me that I'm not missing out. With all the channels that are available, there is rarely something on worth watching, and even less is on that is worth paying to watch.

Actually, the doctors used my time here to finish up the tests needed for listing. Some of the test were awkward. One was for ladies. And I had no warning. A doctor came in told me what she was here for And my brain was going "what? Not now. Are these people nuts?" As most ladies know, appointments like that require some serious mental preparation. So it being sprung up was not appreciated. I got it over with, which means that I don't have to face that torture for another two years.

Another thing they sprung on me was an ENT consultation. An ENT is a nose, ears, and throat doctor. Now in my experience a consult is just talking to the doctor, voicing concerns and possibly scheduling some labs. This guy came in with a camera to shove up my nose. And he actually had the nerve to tell me it wouldn't hurt. He did try numbing my nose but all the stuff did was numb my front teeth. It did nothing for my nose. So shoving a camera up there really sucked. All so he could see in my nose, and then tell me that he wants to do another CT scan in a month when I'm feeling better. I guess they want to do any necessary sinus surgery before transplant.

Of course my nose is my favorite body part. So I am hoping there is no need to mess with something so cute.

Spending New Year's here didn't turn out bad. My sister and her husband came to celebrate. And SB made it in time. So we opened the Martinelli's and rang in the New Year. The funny part was my brother-in-law forgot to bring a bottle opener. So he ended up figuring out how to open a bottle with a piece of paper. Of course he had to give SB a demonstration. Actually, it was pretty cool.

My sister and here husband went back home after New Year's. They had to go back to work. SB was able to stick around till Friday. During treatments, he would go exploring. He found a few shops that would make me drool.

I did get curious at how often people actually come into my hospital room. So on Saturday (slow day by hospital standards) I timed every time someone came in. It came out to over 8 hours. No wonder I feel like I never have privacy. For an introvert, this can be really draining.

Looking forward to tomorrow. SB is making the long drive to take me home. Should probably sleep tonight so I talk his ear off for four hours.

Till Next Time.