Awe, Come On!

I cannot believe it. First, Food Poisoning, then kidney infection, now…..a virus! Last weekend, mom started feeling as though her kidney infection was on the mend but her throat was feeling a little scratchy. Well by the time Monday rolled around, she could barely talk; it hurt so bad. I took her to the doc who said she was sure it was a virus but gave her antibiotics just in case it was another infection. Yesterday mom was feeling and looking much better but today, she’s starting to feel crummy again. She’s had a fever off and on too. So frustrating.

I feel terrible for her because she’s being bombarded with one thing after another. It’s just not fair. It’s a new year and we’re supposed to be taking the new lungs for a spin to open them up and see what they can do. We haven’t had that chance yet. It’s a total bummer and it doesn’t do much for either of our spirits. We want to play! We want to hang out. We want to shop. We want to go to the movies. We want to socialize and have  a life.

I know I always say “we” and you may be thinking, why is she always including herself in everything? She didn’t have the surgery. No, I didn’t. But I’m just as heavily invested as mom has been. I am the one who has to watch her go through all this. I have to watch her have a few days of feeling well and thinking, maybe this is it, I’m on my way to normal. Then I have to watch when she feels sick and wonders, will I ever be well? It’s such a teeter totter. Each day, I wake up wondering, will it be a good day or a bad day? Will we be doing something normal or will we be going to the doctor, again. I think we’ve put her GP’s kid through college already, just this year alone!

We both have so many wishes for the future, but for now, they’re still only hopes. It’s hard to take when you’ve been hoping for so long. First it was hoping for the day there would be new medicine to help her lungs. We got that. Then when we were at the end of that road, we hoped for the transplant. We got that. Then we hoped for getting out of the hospital, then rehab and then home and settled. We got that. Now we’re hoping for the day where every day is a good day & bad days are distant memories. Every day is full of possibilities waiting to be accomplished. A day where talk of doctor’s visits are only a few times a year, not a few times a month. A day where we can relax and not always be on the verge of fear. Fear is a buzz kill. Fear is not something we need or want. Fear holds us back. So, for today, we hope. We hope to turn fear into one more miracle. We’ve had more than our share, I know, but we are greedy and we want it now. After all, what is hope? A belief that miracles can happen. Mom is living proof of that. So bring it on. We’re ready!

Can’t Catch A Break

Well now that mom is over her food poisoning she went and got herself a big, fat, raging kidney infection. She had a miserable weekend of pain and nausea. So we went to the doc first chance we got and she had a fever and the infection. Well no wonder she was feeling so miserable. Poor thing. She was actually very relieved to find out it was just a kidney infection. I think in the back of her mind she was worried about it being rejection or something not right with her lungs. She said that at her six month mark she felt just incredible, like a new woman. Then she seemed to go down hill a little. One thing after another that kept her down. She said, I just want to feel well again. So when she heard it was a kidney problem and not a lung problem she was quite relieved. They gave her some strong antibiotics that seemed to have kicked in quickly. She’s feeling better but not sleeping still, so she’s tired.

Can someone explain what the purpose of Medicare Part D is for? Really. It’s the most ridiculous “invention” I’ve heard of. Well, charging astronomical amounts of money for medications is the most ridiculous but this is right up there. If you aren’t familiar with this program, I’ll give you a little lesson. Medicare will pay for your meds until you’ve paid a certain amount of money out of pocket through your co-payments. When you’ve reached this cap, then you’ve entered what they call the “Donut Hole”. When you’re in the donut hole you are now responsible to pay 100% of your medications, until you’ve once again reached a certain amount of out of pocket expenses. Then Medicare will kick back in and start paying their portion again. Depending on how expensive your meds are will determine how long you remain in the hole. Some people never get out of it for that year because they’re prescription costs are not that great. If you’re like mom where, now one single medication is going to cost $2200 and another $720 for the month, then you won’t be in the donut hole very long. There are pro’s and con’s to this. Major con: Now you have to come up with the $4000 (total of all meds) each month until Medicare kicks back in. Problem: Your income is less than half this amount. Hmmm….this doesn’t add up does it???  Now the Pro’s: although I say that with a lump in my throat…..she won’t be in the hole for long.

I just don’t see how they can reasonably expect people to pay this. It’s just a giant snowball of incompetence. You get these people on the phone who just read from a script of how the policy is. There’s no problem solving or customer service of anykind, except the useless kind. There’s no thinking outside the box, or gee, let’s see how we can resolve this for you. You get sent from one agency to the next, from one lazy person to the next, who all expect you to repeat your life story to every single individual you speak with. Then they expect you to do all the legwork and fill out all the forms, if your lucky enough to find someone who gave you an inkling of hope, all the while you’re worried, stressed, and starting to feel crappy from it all. How is that in any way, shape or form, helpful or good medicine??? Now I’m not saying we shouldn’t be trying to help ourselves or that we want someone to just take over and do it all for us, although that would be really great. But a little compassion, understanding and a boat load of competence sure would be nice.

So, obviously we didn’t get any of that, so we (mom, me and Aunt Carol) did research on our own. We have a budget, that puts mom about $300 in the hole each month, and we have a game plan. That donut hole should be a bear-claw hole or better yet, the great abyss, or even the sucker hole. We will be brainstorming in the coming months for more fund-raising ideas and we’re going to get on the horn, again, and start begging the drug companies for assistance.

The other annoying conundrum is that mom falls into this catagory that makes her invisible to the government. She technically falls under the Federal Poverty guidelines which would normally make her eligible for all sorts of assistance. Food stamps, Welfare, Medicaid, Access, etc….BUT, since she has Medicare, this negates her from eligibility from everything. So only the poor and uninsured are allowed assistance. Nevermind that you’re on a fixed income, air tight budget with no wiggle room and now the donut hole is thrown your way and you’re expected to say, thank you, here’s a check! Maybe if we cancel her Medicare and boot her out on the street, she can qualify.

How in the world did we allow our representatives to vote for something like this? Was this really better than the previous guidelines? I shudder to think about that. I don’t have any idea how to create a better program, but I sure hope our new President will come up with something common sense. That may be an oxymoron. Guess we’ll see. For now, our hands are tied and we’ll be writing that check each month.

Cruisin’ Along

Well mom has recovered from her food poisoning. And let me just say, salmonella is going around. Phew, it wasn’t me after all. At least that’s what I keep telling myself.

Mom continues to get stronger. Even after being so ill. She is up to walking for 11 minutes on the treadmill at rehab! And she’s graduated to 2 pound weights! She’s sore and tired, but it’s all good. Today I noticed that we don’t have to drive around and around waiting for a handicap spot to open up. We can park way out if we have to. Mom just walks slowly and eventually we get there. She doesn’t use the “driving” carts at the grocery store either.  She just walks and walks and walks every where we go. It’s really cool.

This week I dragged boxes down from her attic and in one night she managed to put all her Christmas stuff away. I was surprised. There were a lot of items to pack up and I didn’t think she’d make it in one sitting. Sure glad she is able to prove me wrong!

Tomorrow mom is going to come over and help me clean my house! Wow! Who knew a lung transplant would transform her into my very own maid! If I had only known……

I Didn’t Do It!

Well, maybe I did, but it wasn’t an evil diabolical plan. I didn’t mean to.

Mom has been pretty sick for the last week. I took her to the doctors today and she said she’s pretty sure mom has food poisoning! My first thought was oh, no! Christmas dinner was the last place she was out and about before she fell ill.  I’ll feel terrible if I poisoned my own mother!  Poor thing. She’s been just miserable. Her body hasn’t been nice to her at all. She aches everywhere. Today she was feeling a little better so we grocery shopped after her appointment but it wiped her out. It’s a shame too because she was just getting a little stronger at rehab. She was going to move up to two pound weights this week. She’ll get there.

During the course of her not feeling well we had our family Christmas gathering. Our entire family gets together to celebrate the holidays together. This year my cousin Brenda was kind enough to host us all. She has this great house, that mom and I hadn’t seen yet. It’s two stories and so cute. When we arrived Brenda gave us a tour. Mom was able to walk all the way up the stairs with no problems! She just went slow. That’s about 20 stairs! And they were pretty steep. I was so excited. Then she came down the stairs, no problems. Aunt Carol offered to catch her but mom chose to use each step all by herself. It was really great.  It didn’t really hit me until the next day that wow, she really did that! Amazing. Despite her not feeling all that great, she enjoyed herself. It’s always nice to see our family. Everyone is always so busy and we don’t get the opportunity to get together like we’d like to, but the holidays are a priority for all of us to gather around and catch up. We had a super nice time.

HAPPY 2009!

We’ve had a tremendous year filled with many blessings. And yet, I get the feeling that this new year will be even grander.

I have already seen the tides of change. This week I took mom to the mall. When we arrived I realized that we didn’t bring her walker and it never crossed our minds to do so! That was a first. In the past, all outings were filled with prep work. Fill the oxygen tanks, make sure we have enough to last throughout, put them in the car, put the walker in the car, are there any meds to bring? Help mom in the car and be on our way. Then reverse the process once we arrived at our destination. Now, there is no more prep work. Mom grabs her purse and walks out the door, unassisted. It is just another little reminder how lucky we are to be here. It’s so wonderful. I see her getting stronger. I see her spirits are high and there are future projects in the works. There are so many things to look forward to now.

Before mom’s transplant, she wasn’t doing so hot. We were at a crossroads. Although my aunt and I never verbalized it, we had this common knowledge that we were sure mom wouldn’t make it to Christmas. When we saw Dr. Feldman for her first post transplant appointment, he confirmed the same beliefs. It’s one thing to have an inkling, but to have a professional that we admire and trust open his mouth and say those words, it’s a hard hit of reality.

Fortunately, she did have the transplant; she did make it to Christmas, and we were given the gift of  a special holiday season together. Our New Year will just as spectacular and I can’t wait to see it all unfold.

We wish you all a healthy and special New Year!

Merry Christmas!

What a Christmas season it’s been! We’ve been having so much fun.  We’ve shopped, we’ve partied and we ate, a lot.

Usually it would take every ounce of effort on both our parts to get everything done for the holidays. Rushing around, driving ourselves into the ground. This year, it all went off without a hitch. We found everything we wanted. We did it ahead of schedule. We had energy and fun along the way!

It was a thrill for me to see mom so excited about the holidays. Year’s past, there was just no energy and a great lack of interest because of it. The effort was just too great to participate. This year, she decorated her tree. She shopped. She wrapped presents, baked goodies and attended parties.  All with excitement in her heart, joy on her face and spring in her step. It was the best gift I could have had.

The other day mom helped Aunt Carol carry some folding chairs. She carried one in each arm! She now helps me load and unload groceries. She does her own laundry and cleaning. I asked her if she’s noticing that she’s getting stronger and she said, most definitely! She has more energy and can do more physically. Her mental status is superb! She said she did get tired after making brownies because she had to mix by hand. But she made them! She hasn’t done that in years.

Today for Christmas day, I picked her up and brought her to our house. We had a lovely time. We did gifts and a simple dinner. There wasn’t much for mom to help with, but she did carve the turkey! Both of them! (we do two small turkey breasts).  That was a long time standing and not one complaint about her back. It was amazing. We watched tv, got caught up on some computer things (since she doesn’t have one anymore) and listened to Christmas music all night.  Oh, we even lit a fire in the fire place. Since mom missed Thanksgiving with us, this was her first fire in over six years. I took a picture of her sitting by it. It’s just another little thing that adds up to another momentous miracle.

We are blessed and wish each and every one of you a peaceful holiday season.

Perfectly Productive

Santa enlisted me to help him with a task. So like a good little elf I ran all around town looking for the perfect Christmas tree for mom. Real, or otherwise. I had no luck finding the fake kind, so I then searched for a real tree. It had to be full, five feet and the kind of branches you can see through (so the ornaments show up). The first three places didn’t have them. I started to worry. I only had another half hour before my lunch date with my friend. Then as I was about to give up and headed toward the restaurant, I saw it. The nursery by mom’s house had a lot of tree. So I stopped and voila! There it was.  It was a little lopsided and slightly too bushy, but I thought it would work. He only took cash which I didn’t have on hand, so I told him I’d be back. I went and had a lovely lunch, ran to Walmart and found everything I was looking for. I found the tree skirt, the tree stand, ornament hooks and white lights. All in a breeze. I had an hour and a half before mom was due home. She had rehab today and Aunt Carol was stalling her for me. I got to the lot to pick up my almost perfect tree and it was gone. I was crushed. Then I saw it. The actual perfect tree. It was just what mom had been looking for in the artificial variety. I snatched it up, threw it in my car and off I went. I managed to get the tree in the stand (not easy by yourself), strung the lights and set it on her table and wrapped it up in the tree skirt. I was so pleased with myself that everything was falling right into place. That is, until I went to plug in the lights. Hmmm….what’s this? There’s no plug? Where is the end you plug in? Well I was on such a time constraint (I was due to pick up Malibu any minute) that I stopped thinking and started panicking. I called Lee. No answer. I called Deanna and she called Kevin. He told me what to look for at Home Depot. So zoom, off I went. I found what I was looking for, but didn’t have time to get back there. All the while, I’m thinking, this just doesn’t seem right either. I still don’t think I have anything to plug into. Whatever, I just need to get Malibu and have him help me. I picked him up, we rushed back to mom’s because I knew Aunt Carol couldn’t stay away much longer. When I looked at the tree this time, I realized, duh, I strung them upside down. And I swear I looked at it before I put them on and thought, gee, I’m clever, I remembered to look first before going to all this work. Uh, not so much. But I did what Kevin said and just plugged in a long extension cord to the top of the tree and it worked!  It was so pretty! I was so excited that I pulled it off!  I just LOVE surprises. Especially when I’m doing the surprising. Santa’s little elf even left a present under the tree.

Aunt Carol took her home and said, oh can I use your bathroom, so she could come in and see. Mom walked in, put some things down on the table, walked into the kitchen and didn’t even see it. Aunt Carol is silently waiting for her to notice. Then finally! She did! She said she was so stunned, that she was speechless. She couldn’t even process what she was seeing. Then she couldn’t tell if it was real or not. She thought it was just perfect too! Yay! One point for Santa!

I spent the rest of the evening decorating my own home (I’m halfway finished) and making rum cakes. Tonight I made just four. I say “just” because I have about 8 more to make. Just call me Susie Homemaker.

Mom and I were both so excited over her surprise that I forgot to ask her about her workout today. Well I’ll see her tomorrow. We have another busy day.

Not Just Hum Drum

Aside from the holidays, we are getting back to normal. Into a routine of sorts. Tuesday and Thursday is rehab. Wednesday is shopping day. We hit as many stores as mom can tolerate. Groceries, or wherever. Every other week is the lab on Wednesdays. So most of her days are pretty full. Not a lot of down time. Mondays and Fridays are reserved for appointments and general merriment. Last Friday was Aunt Carol’s birthday, so we took her out to lunch. Just like my birthday, we had a really great time.

Yesterday we planned to go grocery shopping but we went to Walmart first and halfway through the store mom got very, very tired. But she persevered and finished her shopping on foot (no driving cart!). We talked ourselves out of grocery shopping, which is never hard to do and we went home. I crawled up in her attic and dragged down all the Christmas decorations. Mind you we never did find that perfect Christmas tree. She may just end up with a real one this year. But she still needs and wants to decorate. It’s always so fun to reminisce over the old decorations. After that we were both pooped. I went home and she went to bed and we both relaxed.

Today was rehab and she’s doing great. It will take time to build up her strength but she’s improving all the time. No more wobbles, although she won’t be running any marathons just yet. She carries her own groceries and participates in things where ever she can. Sometimes it catches me off guard. I think, wow, she can do that now! Just walking back and forth to bring stuff in from the car is new. Before the transplant she was completely unable to do that. It was always, get her in, get her settled on the couch and let her watch the activities, if she wasn’t falling asleep. It’s those little daily, simple things that make me so proud. I notice her voice is strong now. I notice she doesn’t get winded walking to the phone, or even talking on it. She is gaining strength and stamina. It’s exciting to witness.

Yesterday evening was a fun time. I took my niece Taylor and my mom to Deanna’s salon so they could get sparkle toes! They are the prettiest things you’ve ever seen. They did the same thing I did when I got mine. Just stared at them and kept saying, they’re so pretty! They really are mesmerizing. So much better than regular polish. It was so nice of Deanna to work on her time off. She’s the best.

Mom is really enjoying getting out of the house. Especially when it’s not a regularly scheduled outing. It’s the out of ordinary things that make life, life. Otherwise, you’re just a patient who’s allowed to live at home .  Oh boy. And she’s not a patient anymore. She’s a healthy person! I think it’s finally sinking in, for both of us. So these times are really special and we’re so grateful for them. 

The everyday things are getting better and getting out on the town is icing on the cake. Life is getting good!

Holidays

Can you tell it’s the holidays? I’m already behind and it’s barely December!

Well, Thanksgiving was a total bust. Mom woke up feeling sick, with a sore throat and overall yuckiness. I felt so bad for her. I felt bad for me too. I had all these things planned for her while she was at my house. Things to catch up on from the past six months. Not to mention we missed out on her famous gravy! Malibu was still sick as well, so she probably wouldn’t haven’t come over and be exposed anyway. The three of us had a very simple, nice meal. We didn’t do anything special. It was nice to be together, but we were sure missing mom. I made her a giant doggie bag of our dinner and brought it over to her. Turns out she liked my gravy! Watching her all these years, something must have sunk through my non-cooking brain. Mom was so disappointed that she was sick. She said I was feeling so incredible and full of energy last week that I was ready to get up and paint my livingroom. She really felt like she could. She realizes she probably over did it last week. It was a busy week with an outing of some sort every day. Guess we’ll have to be more careful.

Sunday was my birthday and mom was feeling better but didn’t want to come to dinner with us so she could save her strength for my birthday lunch on Monday. She and Aunt Carol took me out and we had the best time. We went shopping afterwards. Mom started getting tired but they had a seat she sat at for awhile, then continued on. So she’s learning to listen to her body more.

She’s been struggling with insomnia again, so this week hasn’t been as remarkable as last week.  Tuesday she had rehab and was so tired going there, but made herself go and was glad she did. Seeing all our friends and having encouragement from people in the same boat really helps.

We have running around to do today. All those “to-do” things you hate to do but have to. Groceries. Yuck. We had planned to go yesterday but I had to take Malibu to the doctor because he still wasn’t feeling better. Doc said he had the flu. Poor kid was miserable.

Mom and I are on a quest for a perfect artificial Christmas Tree that doesn’t cost the price of a car. The cheaper ones look cheap and she has these beautiful crystal ornaments, so a nice tree is the only way to go. Otherwise it’s like putting diamonds on a mutt. What a waste. So we’ll be looking for that today as well. She hasn’t had the energy in the past years to put up a tree, so this year is especially exciting. She has a need to decorate and be a part of the holidays. 

Me, I prefer to have more time for the holidays. It’s like when I was in school and I would study for a test. Test day would come and I would always think, I’m not ready, if I just had one more day, I’d be set. I’m my own worst enemy. I LOVE giving gifts. It’s so much fun for me. It’s the only time I like shopping. The last few years I’ve made a tradition of making goodies for our friends. This takes up a ton of time, but it’s always worth it. I’m trying super hard to pace myself, but at the moment, I still tire so quickly that I could care less if the decorations get done. Just the thought of the effort makes me want to lie down. Every day I consult my calendar and see what can be put off until tomorrow. Procrastination is my survival key.

Happy 6 Months!

It’s amazing that it’s been six months already. Since we’ve been home time has flown by. When I look back over these past six months, I am awed at our journey. To think that someone can live with someone else’s lungs. What a gift. What a triumph. Today we celebrate the bravery of many. The bravery mom clung to in order to be where she is today. The bravery of a mourning family who allowed this beautiful moment. I’ve said it before; it’s truly a miracle.

So many miracles that they’re hard to quantify. Some big, some barely noticeable. Every passing day is one if you think about it. Our friend Karen, said to me when I was struggling through all of this while mom was still in ICU, just wait. It will get better. You watch, at the six month mark you will see a difference. It will be like a switch was flipped on and you will recognize your mom again. I had hoped she was right. I prayed it would come. The first month after we got home was such a struggle I didn’t expect. Silly me thought, well we’re home, let’s get on with it. That certainly wasn’t the case. The process of reintegrating, for all of us, was more challenging than I ever thought. Then one day I realized, hey, I’m seeing some improvement. There’s a glimmer of my mom in there. She noticed it too. It was the little things. Being able to carry her own purse. Walking unassisted from the car to an appointment. Doing laundry. Cooking a meal. All the things we all take for granted. They were emerging. It’s like watching a beautiful butterfly slowly peaking out of it’s protective cocoon. Knowing how scared it must be but watching the wonder of it’s first flight.

This week has been that flight. I watched mom haul three bags of heavy groceries in on her arms and not be winded! She lit her first match and smelled her first candle in six years. She cooked an entire dinner for my brother and his family. The fear has been replaced by strength. Her quiet determination has served her well. The switch has been flipped. My mom is back. I recognize her now. It’s the most glorious overwhelming feeling. Today marks the day where I can see the rest of mom’s life. Productive. Fulfilled. Happy. This is what we struggled for. It was terrifying. It left me awestruck at her grace and strength. The day has come and today we celebrated. It’s been a journey I feel proud and blessed to have been a part of.

This week we will celebrate Thanksgiving at my house. Mom will make her yummy gravy and we will light our first fire in the fireplace. It’s something she always loved, but couldn’t partake. Just one more reminder that her life is new. Like the flickering flame she has strength that fuels her passion for a renewed life. I am excited to see where it takes her. We have a lot to be thankful for.

We wish everyone a very Happy Thanksgiving. May you enjoy it will all those you love.