IV Room Happenings

Today turned out to be an interesting day. I started off the morning with my last IV dose of Meropenem (yay!) and then headed to lung transplant clinic. There my meds were adjusted to lower my immuno-suppressants. Another yay! I am especially pleased about my prednisone dose being lowered to 15mg. I really hope that'll help with my blood sugar control. Perhaps it'll help with my current food obsession! I want to eat all the time, even of I'm full! It's getting out of control!

It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!

Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.

How cool is that?

Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!

I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.

I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!

Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...

Insulin and IVs

For the last week we've been treating my old CF bugs with antibiotics three ways: oral, inhaled and IV. If we're lucky, maybe we can get rid of them once and for all! It feels weird to go back to the old CF routine, even it hasn't been very long since that was my usual. I almost forgot how time consuming it is! I get my IVs at the hospital IV Room, and for the last three nights I've also had a Magnesium IV. Might as well since I'm already there! Needless to say, it feels like I have spent too much time there already, and it's only the halfway point.

Things are going well in the gym. I am already lifting more on the leg machines than pre-transplant, and there's no comparison on the treadmill! Lately I have been riding the bike because my feet and calves are still sore and cramping. I hoped the Magnesium IVs would help with that, but it doesn't look like it. I just can't seem to keep my Magnesium in a normal range! I know that the Tac is the main culprit, causing the body to waste Magnesium.

My sternal precautions are sort-of off. I am now seven weeks post and can use my arms more. I still need to be careful not to lift too much or do things that hurt my sternum. I will be transitioning from OT to upper body exercises in the gym over the next couple of weeks.

My biggest complaint is the diabetes situation. I switched my long-lasting insulin to Lantus, which is supposed to last about 24 hours and be constant throughout (instead of having a peak). The blood sugars are still not awesome, but are looking better. I am now using a sliding scale along with carb counting. I think it's a more accurate way to go. I'm just sick of all the pokes. I check my sugar at least four times a day, and give myself insulin at least six times a day. I also break up the larger doses into two shots, otherwise I find they hurt. So usually that's more like eight pokes. That makes a grand total of about 12 needles a day. I am running out of places to stick myself! I've been taking 30 units with breakfast alone lately. Before transplant, I would have maybe 30 units all week! I hope that things improve with time and I'm looking forward to my prednisone dose decreasing.

Things have been going really well. I am so happy with my progress and the lung transplant program. My diabetes is my only complaint, which isn't much to complain about, I know! Again, I can't help but think what a positive experience this has been and how much my life has changed. What a gift.

Happy Canada Day!

I spent my Canada Day in the hospital. I was admitted yesterday because I was short of breath, and doing more choking than coughing. I definitely need some IVs and lots of physio. It's been exactly one month since I was last discharged. This is getting very predictable! It's too bad because I had two very good weeks after I left the hospital last. And then I had two terrible weeks, and I blame the bowel obstructions for setting me back! I couldn't do physio or even cough properly while I had so much abdominal pain. Hopefully I will leave on home IVs early next week.

I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!

My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!

There's No Place Like Home!

I was discharged yesterday afternoon and it feels great to be back home. I must say that this was the smoothest hospitalization ever. No disasters and no roommates! Two weeks is still a long time to be away from home though. Home cooked meals have never tasted so good! I am happy to unpack, see my dog and get back into the swing of things!

My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).

For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.

I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!

More of the Same

This is a been a pretty routine hospital stay so far. I'm on Tobra and Ceftaz plus physio three times a day. I am feeling much better than I was last Monday when I was admitted. I'm no longer short of breath at rest, and my breathing is improving with exertion too. I am hoping to go to the gym soon and spend some time on the treadmill. Maybe I'll get out by the weekend or early next week.

My husband has been spending tons of time with me, which makes being stuck here much easier. It was the long weekend so he got to spend even more time with me! I've had a few other visitors too, which is great. Everyone had been making comments that maybe I would get The Call over the long weekend... but nothing. I think there's a common perception that holidays and special occasions are big transplant days, but I don't buy it.

I am having that sleep study done tonight. I don't know exactly what to expect, but a RT will come by and set things up. I'm just glad I'm getting it done as an inpatient. I'm sure it's saving me a few trips to the hospital!

Some Relief

I haven't been feeling good for weeks and it looks like today I will get some relief. I am being admitted once a bed becomes available this afternoon. I was wondering what it would take to get treated! Yesterday, I went to the hospital to have my routine port flush and the nurses were super concerned about me. A couple of phone calls later, the wheels were set in motion!

This past weekend was a tough one. I have been extremely short of breath even though I've bumped my concentrator up to 9.5 LPM. My resting heart rate is around 110 and I am constantly exhausted. I can't keep this up much longer. I need those IVs!

Here's hoping I get a private room!

Transplant on My Mind

I had a nice Easter weekend and got to spend time with our family. My husband single-handedly prepared an amazing meal and got the house ready for company. I am finally starting to feel a little better everyday, which is a relief. I was supposed to complete my home IVs last Wednesday, but I didn't feel any better. Instead, we switched the Cefepime to Ceftaz for another week, keeping Tobra the same. I'm due back at clinic on Wednesday and I'm anxious to get rid of the IVs and port needle. The hospital switched needle brands and this kind has no cushion. It just sticks out and has gone interstitial once already.

I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.

Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!

One More To Go!

Tomorrow is my last day in the gym. It's hard to believe that the six weeks are up already. I am excited to finish the program and return to my normal life, but I'm wondering if I'm ready. I feel like it's graduation day and they're sending me into the real world for the first time. I have focused on exercise for six weeks. I haven't done much in the way of socializing or being in public. I feel so sheltered!

My physio has customized a home exercise program for me. I got the chance to review and practice it already. I have decided to do my work outs at home. There are pros and cons to the home gym vs. public gym. At home, I love how little effort it takes to get to the basement where we have our equipment, but I admit that I tend to take longer breaks because no one's counting! I should put a clock on the wall. I find at a weight room, there are other people watching so I tend to push myself more.

At home we have a treadmill, a bench and some free weights. We are also going to purchase a bosu ball (for my lunges and squats) and a roller (for my back exercises). It works out well because both my husband and I can use this equipment.

I will finish my IV meds tomorrow! I am looking forward to being free of the extra tube and bag with my pump. This has been my longest course of IVs to date- 2 and a half weeks (18 days).

Overall, I'm really happy with the program and my progress. I feel stronger and I can walk with less effort. I also feel like I have had a chance to work through more of my tx issues. I have seen the ICU and know exactly what to expect at the gym. I have met some wonderful people and heard their inspiring stories.

I can't believe there's only one more day to go!

IV Time

Last week was clearly smooth sailing compared to this week. I'm experiencing a bit of an obstacle this week. On Monday at lung transplant clinic I was put on IVs. It's not my usual routine, but I think it'll work. It's a combo of one IV med, Cipro, inhaled TOBI and extra Pulmozyme. At least I was able to be set up on home IVs, but it's all different. Different pumps, different rules and way less independence. A home care nurse had to come over today to change the first IV bag. Seriously. At least I am allowed to change the bag myself now, and home care only has to come on tubing change days. I have to go to the hospital to get my port needle changed because home care doesn't do that for whatever reason. If only it could all be done at the hospital since I'm already there every day, but they don't have a clinic like at home.

This week we have begun to work on my posture as well. I didn't think my back was that bad until I tried the first exercise. I couldn't do it. I was frustrated and shocked that I had lost so much flexibility. I tried an easier version of the exercise with more success. My physio also tried manipulating my back to relieve some of the pressure in my spine. It worked great. As the day went on I kept feeling better. I don't know how to describe it, except that I feel younger. The difference is amazing! I'm looking forward to working on my back more and correcting it as much as possible. I would love to see a ripple effect where a positive change in my spine allows my rib cage to expand more, leading to deeper breathing. That would be the ultimate result I could hope for!

Blue Light Thoughts

I don't know why the blue glow of my IV pump at the hospital late at night gets me thinking. It's hard enough to sleep at the hospital, but when I turn out the lights my mind fills up with thoughts about my CF life. Too much time for reflection I guess.

These couple of days in hospital have been tough. I am more tired than ever before, and coughing more than ever before. I don't even feel like myself until about 4pm when I get a bit of energy. I know things will improve soon when the antibiotics kick in. I have been lucky to be visited and entertained by friends and family, who come regularly with meals and stories to tell me.

There is no doubt that my visits here are getting closer together. In the last year: December, March (home IVs), May, August (home IVs), October, November. I have accepted that I will be here a lot as I wait for transplant. I am still thinking positively, but it's a reality that I understand. It's the nature of CF.