You’ve been born again!
Don’t you all wish we could have a do-over again? What a fabulous opportunity to begin something you’ve always wanted or to change something about yourself you never liked. Really, what have you got to lose when you’ve stared death in the face once (or three times) already? And won!!! I think I would be less lazy, more productive. Well….maybe not. Some thing’s are just ingrained.
One year ago today mom’s life changed forever. It was a day filled with excitement and anticipation. We had no idea what was ahead of us. We were just excited the “call” finally had arrived. Since those first long, three days Aunt Carol & I spent in the waiting room for the surgery to be over, so much has happened. When I look back on this past year, it’s really astounding all that Mom has accomplished. There were many, many adversities in the beginning. Life threatening, terrifying moments. Yet she survived. There were many instances where none of us thought we could go on one more moment. Yet we survived. Thinking back to that day, is like having your life flash in front of you. I can remember all the moments. Big and Small.
I remember the fear. I remember the waiting. I remember more fear of the unknown. I remember the quiet moments, both alone in mom’s room watching her while she slept and I remember the quiet moments she and I shared together. It’s one of those experiences that stay fresh with you for a very long time. Some days I still wonder if it will ever be a distant memory. They never tell you all the little details of the transplant process. Not as a patient and not as a caregiver. You’re strictly on a need to know basis. For me, personally, I would have liked a little heads up. For mom, I think being in the dark was best. As a patient, some things really are better left unsaid. And yet, she triumphed. She not only triumphed, she kicked that transplant in the ass! She survived. She succeeded. She surpassed any expectations we all had or put on her. Completely, bewilderingly, she persevered, drove on, again and again to get to where she is today.
Oh, what a lovely place today is. Let’s reflect a moment on the things she can do now that she couldn’t before. She can breathe without oxygen, all on her own. Nice, big, deep, full of life breaths. She can speak on her own, without a valve for assistance. She can sit up. She can stand. She can walk. Not only can she walk her six minute walks (a doctor devised measurement of her lung function) She can walk as long as she wants, as much as she wants. She doesn’t have to park in the handicap spots because the walk to the store, the movies, where ever, isn’t so ominous anymore. She can bathe herself. Get dressed by herself. She can care for herself and her home. She can do her own medications and make her own appointments. She can cook. She can have long conversations on the phone now. She can dream. She can see a future. She has a future! She laughs, She plans, She enjoys. She is full of life. Miracle after miracle. I know she’s complete now because she shops me into the ground. :) My mom is back! A whole new Didie! What an inspiration!
There’s so much to be thankful for. The transplant alone is something to be grateful for, but it’s the people behind the transplant that mean the most. The two teams of doctors that saved her life, several times: Dr. Feldman at St. Joe’s and his team and Dr. Moulton & Dr. Knoper at UMC, Tucson and their team. What a brilliant group of people. Not only are their skills pefection, but every doctor needs to take a lesson from their bedside manners. When you look into their eyes, you see and more importantly, you feel, you are genuinely cared for. You’re not just another career moving, notch in their belts of saves. You are their family and they are yours. You share something among you that few people get to experience. It’s touching and beautiful. There will never be words to properly thank them for saving my mom’s life. This level of care also extends to all the people at the hospitals and rehab facilities. Angels all. We of course wouldn’t be here if it weren’t for the graciousness of the donor family. I can’t imagine being put in such a position to make a decision like that. Hopefully in this year they have been able to find peace and perhaps some day they will know what their selflessness has done for us. Again, there will never be words. Our family and friends were also vital parts of this process. I know I couldn’t have survived if it weren’t for them. Aunt Carol especially gave of herself like no other. She’s my angel. Our husbands & my son gave up a lot for us to be with mom during this time and that too, is very special.
So today we celebrate! We celebrate a new begining that God gave us. We celebrate a new life. Happy 1st birthday Mom. I love you.
P.S….We had a really great day today! We had planned to celebrate in Sedona but with the Memorial Day holiday, we figured we’d be fighting crowds all day. Neither of us wanted to do that so mom suggested we do some shopping (imagine that!) and see a movie. So we did just that. We were gone from 10:30am to 8pm! We shopped a ton and mom found a lot of items she had been looking for. You know when you have in your head something that you want but can’t find? That was what had been happening all week. But today, everything fell right into place. She found everything she was looking for. Mom got about a month’s worth of walking in today. We had to park far away because it was so busy. She only sat once because of her back. Twice I picked her up curbside, but she had done a lot of walking just prior. Then we went to the movies. We saw Demons & Angels and it was really great. We both enjoyed it. It was a nice break to sit down and relax. Then we picked up Lee & Malibu and headed off to the Outback (our favorite). Mom had wanted a really good steak to top off her day. We were all stuffed when we left. A good meal. A great day! She had a wonderful time and so did I. I think it was even better than if we had gone to Sedona. It was just one of those perfect days. I’m so proud of her and all her accomplishments. We’ll both sleep well tonight.
We kicked off this month by celebrating mom’s birthday on the 8th. She woke up to this beautiful large plant that Scott & Kris had given her. What a great way to start the day. She loves plants more than anything. Aunt Carol & I treated her to lunch at Marie Calendars, where she got her favorite Lemon Meringue Pie. We had a lovely time.
She started back to physical therapy two weeks ago as well. It’s starting at the beginning once again, but she knows it’s good for her and pushes on. She’s hoping it will strengthen her back, as it is hurting more and more these days.
One day we took a break from everything and had movie day at my house. We have a new 63″ Plasma TV and man, what a great picture. We watch Mama Mia and it was spectacular on this tv. It’s set in Greece and the waters were amazing. I’ve never seen such clear, blue waters. It was hard to pay attention to the movie with all that beautiful scenery. It was nice to be able to do something fun and lazy together.
The 10th was Mother’s Day. Mom had dinner at my brother’s house, which is actually her house too. She lives in the garage apartment and they have the main house. So it was a quick walk to their side and my sister-in-law made a wonderful manicotti dish, from scratch!
This weekend mom went swimming! She, Kris & Taylor all went in their pool. This was the first time in 6 years that she’s been able to be in the water. She could never before because of her medication pump. What a thrill!
The 17th Aunt Carol and I took mom to the Symphony (her birthday gift from us). They were having a medly of Rodgers & Hammerstein Music. It was so much fun. We ate lunch at the Cheesecake Factory before the show. Then drove downtown and thankfully Aunt Carol has a good sense of direction, otherwise we never would have found the place. No one thought to look up where we were going! Dunces all. Like all downtowns, they’re crowded and impossible to get parking near your point of interest. We lucked out and parked in a garage near Symphony Hall. We parked on the top floor and at first we thought we were in trouble. The elevator was out! So I moved the car near the working elevator and took that down. Wouldn’t you know it, the working elevator was on the back side of the building, which put us a full city block away from our venue. If the other elevator had worked, it would have been a few steps across the street! Figures. Mom had woken up with her back really hurting and we were concerned that she wasn’t going to be able to make it that far. It never occured to us to bring her stroller to hang on to. She hasn’t used it since she’s been home. It would have helped, but she says she’s not going to use it. She’ll tough it out. She doesn’t want to feel likes she’s going backwards. So we took our time and walked the whole way. It gave us a chance to see what was around us. Restaraunts and shopping. They’ve redone this area and it’s so nice. We made it to the venue, up the long ramp to the entrance and then had to wait for the elevator that took us to our balcony seating. Of course there were no seats left (while waiting for the elevator) and apparently male chivalry is dead. Not one man, or woman for that matter, offered her a seat. Granted, most of the people there were older than the hills (matinee) but still. An offer would have been nice. I was about to boot someone out, but mom said no, I can stand. Then they opened the elevators. Thought we were in the clear but low and behold, two small flights of stairs to get to our seats. Poor mom was in such agony by the time we got to our seats. She did bring pain medicine with her and took that right away. The symphony was just wonderful. We all had a super time. It was a great way to spend an afternoon. I could do that every day. Mom really enjoyed herself and managed the walk back to the car just fine.
Now that mom’s cataracts have been taken care of she can see really well. She didn’t realize just how bad her eyes had become, until the other day. She had told Scott awhile back that her transplant scar was gone. She was surprised at how quickly it healed and disappeared. Then she noticed the other day, post cataract surgery, that it was still there! She said, I got a chuckle out of myself. I really thought it had vanished! Guess there is a downside to seeing too well.
Saturday is the 23rd and this day is going to be a very special day for Mom, for all of us. It will be her one year anniversary since her transplant! I can hardly believe it’s here so fast. We will be celebrating by going to Sedona. It’s so pretty there, one of my favorite places. We used to go there when I was a kid, whenever someone would come to visit. I don’t think we’ve been back since that time. I don’t have any set plans once we get there, but we’ll play tourist and have a leisurely day in the cool mountain air. More to come when we get home. :)
Mom had her second cataract surgery and it went just as well as the first. The WOW factor wasn’t as impressive as the first eye. The doctor said the less dominant eye is always anticlimactic. But the good news is that she can see great! She did notice that she is having trouble seeing close up now. She thought, great another expensive doctor visit and eye glasses are not cheap these days, but the doctor told her, pft, just go get over the counter reading glasses! She didn’t even know they made such things. She was thrilled! So we went to Walmart and she got a real cute pair for $1. That’s right. A buck. Too cool. So she’s going to pick up a few extra pairs. One for the car. One for the living room. One for the bedroom. Hmm….maybe she should get one for the kitchen and bath too. So cheap! Makes me want to run out and get a pair for myself.
She took her new eyes for a test spin today. Aunt Carol took her to the movies with her friends. She had such a wonderful day. She loves being out and among people, doing things. Unfortunately days like this are a true treat because she is usually waiting on us to take her places and that usually means, doctors, grocery stores, boring, “have to” stuff. So this was really nice. Afterwards they went shopping and mom picked up some really great deals. Bargains must be her thing! Lucky.
Sunday Mom and Aunt Carol are going to my cousin’s church. They just had a baby two weeks ago and so mom can’t wait to go and get her hands on him. She’s a baby magnet. She loves them and they love her. And what a little cutie Enoch is. We’re all so happy for them. Something too look forward to. I love that. I get such guilt over not being able to do more fun things with mom. It’s just so hard to fit everything in most days. I perpetually feel behind and then that carries over to only being able to do those darn ‘have to’ things. It can get pretty boring and frustrating for her. I feel really bad for mom. She can get super bored sitting at home waiting for us. Some weeks it’s a challenge to get out and enjoy all the beautiful things around us. All the opportunities we have. Wednesday we’re having a marathon movie day. We’re treating ourselves to breakfast and then crashing on my couch to watch chick flicks. Then Aunt Carol and I will take her to lunch for her birthday next Friday. Something to look forward to. I need to do that more often. Create things to look forward to.
Next week will be mom’s first trip back to physical therapy in months it seems. Now that most of the major doctor appointments are behind us, she can get back into a good routine. She’s noticed she’s lost some strength and her back is acting up something awful. I like her determination though. She doesn’t let the pain stop her from doing things. It’s been a little frustrating for her because she’s been sick so frequently since Christmas with this and that. She doesn’t feel like she’s been really able to test drive her new lungs. I see such a difference in her though. She truly is her self again. She just doesn’t feel it in full capacity. Just imagine what she’ll be doing when she does! I can’t wait. So, we’re back on track and life is looking up. So full of possibilities. Every day is exciting. Every day is such a blessing.
She’s my mom! Every day is becoming more and more normal. When ever I talk to mom I get this smile in my heart. She’s back. It’s her. I remember her. It’s wonderful.
The last few weeks she’s been helping me with Lee’s birthday plans. Helping me with ideas and helping me with the cake. I wanted something super special, but I’m terrible at these things. She is creative and I couldn’t have picked the perfect cake without her. It’s so nice to share these moments. A year ago she could barely get off the couch, and now she’s participating in life. It’s remarkable. No day is taken for granted.
So we celebrated Lee’s birthday and the next day Mom came over for Easter. We had a BBQ. She made not one, not two, but three dishes! And man was it yummy. We had a really great time.
I get giddy when I think of all the possibilities that lie ahead for her. For us. It’s like each day is Christmas and I can’t wait to unwrap each new day.
And here is where I want to stay. It’s been so great lately. I notice more and more how “normal” mom is. There’s no weakness, there’s no confusion, there’s no helplessness. It’s like it’s all been washed away and what emerged is my mom. Happy, intelligent, productive mom. She’s engaging in life and making plans for the future. It’s been a long road but we’ve finally arrived. It’s like the transplant is now secondary; almost an afterthought to living. It doesn’t consume every waking moment. Sure there are daily meds, doctor’s visits, diabetes to worry about, and the ever continual battle of gaining strength and endurance, but she’s getting there. Little by little. Now she’s able to concentrate on other things. Like her eye surgeries. And more importantly, vacations!
So, one eye down, one to go. Her first cataract surgery was a success. She is scheduled to have the other eye done mid-April. I know she can’t wait because of how dramatic the change was with the first eye. Since then, she’s contending with another UTI, but has antibiotics so it’s getting better rather quickly. Mom was given the ok to get back to normal activity and will start back at physical therapy today. It should be good for her back as well. She has to build up her endurance if we’re going anywhere this summer. What a great incentive!
I took mom for her follow up to her cataract surgery. They took off her eye patch and immediately she noticed how colorful everything was. It was great. She tested it between her left eye (now her good eye) and her right eye. She said the right eye looks all dull and colorless and the right is so brilliant and detailed. She was amazed. I don’t think she realized how bad her vision was. It’s amazing what you get used to. With her eye exam she was able to read some very small letters, whereas prior to her surgery, she couldn’t even read the big “E”! It was exciting. She said it was like a blind person getting her vision back! That was pretty cool. Everywhere we went she remarked at how clear everything was. Then we got home and she said, ugh, now I see all the cleaning I have to do! She said, I’m gonna tell the doctor to take it out, I don’t want to see the dust! Too cute. She goes next week for a second follow up and he will let her know then when she can do the other eye. He said she may not even need glasses, just perhaps readers. That’s super!
This afternoon mom had her first cataract eye surgery (left eye). She did great. It was a quick procedure and they said it went smoothly. They called me back after about an hour. When I first saw her she had her “eye” closed an was resting and all those memories of being in the hospital came flooding back. This wasn’t anything to worry about by any means, but just seeing her in that bed, in a gown, with all the monitors and an IV stunned me a little. I hadn’t really put much thought into the whole thing because I had lasiks before. While it’s not the same, I think I was expecting…well…I don’t really know what I was expecting. I certainly wasn’t expecting to have a reaction like that. To be startled by seeing her there. It was like stepping back in time. But it was all completely fine. She was fine. It went very well and we go in the morning for a follow up. When I saw her, she was a little groggy, but functioning. They put an eye patch of sorts over her eye to protect it, mostly for when she sleeps so she doesn’t rub it unknowingly. By the time we got home it was starting to hurt a little. She’s allowed to take tylenol so that should help. We will find out tomorrow when they will do her right eye. She couldn’t get over how blurry her right eye was as her sole eye. She was able to watch tv but it wasn’t clear. When I left her she was doing great. Like she didn’t have anything done today at all, except she has a patch on her eye. She’s a little bummed that she can’t wash her hair in the morning before her appointment. She’s not allowed to bend down for awhile or get the patch wet. We’ll have more instructions tomorrow. She’ll have more eye drops to use for a while as well. She has been using them all week and I thought she would need help with it. Some things make her squeamish but not this. She did it all by herself. She’s coming along so nicely. She does all her own meds now (prepping them for the week). I can finally see the new beginning we’ve all been waiting for.
Last Monday we saw her UMC transplant team. They were all very pleased with her progress. We have her yearly follow up in Tucson at the end of May and they said she’s doing so well she won’t even have to have a bronchoscopy! That was music to her ears! That’s one of those things she was dreading. Yippeee! They want me to send them a picture of mom walking, or standing to share with the folks back in ICU. They have all been asking about her. They are having trouble believing she’s doing so well. The last time they saw her was when she went from ICU to Rehab and she was barely standing then. They will be amazed. We will plan on visiting them all when we go down there. I can’t wait to see all their faces when they see her.
It’s bad enough when you hear you have a life threatening disease that will eventually end in lung transplant, if you’re lucky. Then you have your transplant and think, wow, that was hard, but ok, on with the new life. But oh no, now you have a whole new set of problems and issues to deal with. There’s the painfully long recovery where you have to learn to walk and talk all over again. There’s the the oppressive fears. There’s the ungodly amount of medications that no human body should ever possibly be able to consume and yet you do. Then just when you’re kinda getting the hang of all this, wham! another thing you’ve overlooked. All the lovely little side effects of the medications. There’s the hair loss which is in itself just plain not fair. There’s first the weight loss and you think yipppeee, I’ve never been this size before, what a perk. Then after you’ve given all your old clothes away to goodwill and gain a fab new wardrobe for your new supermodel size, you gain it all back. Well your face does anyway. Damn steroids! You look in the mirror and think, who is this person staring back at me? It must be the strangest feeling in the world. It’s a lot to take in, in such a short amount of time. Six months since we’ve been home from Tucson and we haven’t quite got in that groove yet. Things are much more normalized now, but there are still so many trials and tribulations. For instance, back to those pesky steroids. What a horribly necessary drug. Side effects are great, but it’s doing it’s job of keeping rejection at bay so we’ll take the side effects. We forget some of these side effects however. I don’t know if it’s the wonderful power of denial or just the fact that we have so many other things to concentrate on, but we forget that a major side effect of the steroid has been the onset of diabetes. Now typically that wouldn’t be something you’d forget because that’s a pretty major thing. But when you get on a schedule of eating well and taking your medicine like you’re supposed to, it becomes like everything else….a new normal. But one day last week was anything but normal.
I just dropped Malibu off at school, still in my jammies (don’t judge) and the second I walked in the door my phone rang. It was mom. She could barely speak and managed to say, can you come over I don’t feel well. Zoom. Off I went. She was still in bed when I got there, soaking wet, head to toe, from cold sweats. I knew it was her blood sugar. It had to be dreadfully low. She was fuzzy headed, couldn’t think of words or get her thoughts out. How she dialed my number, I’ll never know. I immediately forced orange juice down her. There wasn’t time to take her blood sugar reading. She needed to eat and wanted soup. I tried to go to the kitchen to make it but she kept getting out of bed. Or trying. She was wobbly, slurring and goofy. If you didn’t know better, you’d think she was drunk. I managed to get her to the living room couch and told her to sit, stay, good girl. I ran and got Scott from next door and said, watch her, make sure she doesn’t fall, I need to call the doctor, she’s going into Orbit, like Margaret used to. (That’s what Margaret, our brittle diabetic aunt, would say when she would start to act funny from low blood sugar). I took her blood sugar at this point thinking the doctor may ask what it is, fully knowing it was too late. But I did it anyway and it was now high. only slightly. Now I wished I had taken the time to see what it was prior. But I was too scared. I didn’t know how much time there was between acting drunk and goofy to coma. Too risky. When I finally got the doctor’s nurse, mom was almost back to normal. Her eyes weren’t quite so large, her speech and senses were returning. What a relief. The nurse said we did everything right and to reduce her insulin. Ok, don’t you need to see her? Doesn’t she need to go to the ER? She was “drunk” two seconds ago and now she’s practically normal, that doesn’t warrant a doctors eyes? Nope! Apparently not. Apparently I’m frickin Nurse Nightingale and did everything that I was supposed to. Gee, somehow that doesn’t make me feel any better since I was flying by the seat of my pants in quiet terror, praying she wouldn’t go into a coma and praying it was her blood sugar and that the organge juice would work magic and that it wasn’t something more serious. Is there anything more serious? Not at that moment. Thank God Scott was there. He talked to her and watched her but having him there was more for my sanity than for mom’s aide. Another brain to troubleshoot with. Another body to look at and say what’s wrong with her? what do I do? Whether the answers were right or wrong, at least they weren’t all my own. Phew! Thanks Scott! Then like waking up out of a deep sleep, mom was back to normal. Conversing, laughing, feeling bad she put us through that. Just like that. So weird. I had a doctor’s appointment for myself that I couldn’t get out of, so when I knew she was ok, I left. I told her I could come back for lunch to make sure she had a properly balanced meal and she said no, she’d be fine. So when I called to check on her after lunch she said she was too exhausted to eat. What did we just talk about?! I made her get right up and make something! She did and she was ok. What a night! At least now she knows the warning signs. No more going into orbit please!
Mom has had a long haul of various illnesses going on since Christmas. Finally she’s starting to feel human again and like she can be productive. So one day after a lab appointment we had a day of pure fun. We went to breakfast, we went shopping and then we went to the movies. She hadn’t done that since long before her transplant. It was such a wonderful day. It was a day like I’ve been dreaming of. Just a day where girls can be girls and not have a care in the world. Utter and complete bliss. There’s my light at the end of the tunnel I’d been waiting for. Later that night when I was reflecting on the day, it dawned on me. She’s come such a tremendously long way. She’s a wonder! She walked everywhere we went. Unaided. Unwobbly. Not only that, but after all the other things we’d done that day, she walked the long distance from the car, to the theater, into the theater, down the long hallway, into the screening room and down that long ramp then up a small flight of stairs!!! Then reversed the process when we were finished. Unbelievable! Such a triumphant day!
Yesterday she was finally able to get back to rehab. I can’t even remember the last time she was there. She’s begining all over again, but that’s ok. She goes slow and will get there. She felt good. She even slept last night because her body was worn out from activity. Yay! But this weeks at rehab will be short lived. This week we finally got her in to the eye doctor because she’s been saying she can’t see a darn thing, she needs new glasses. Well, glasses are not her problem. She has cataracts. Both eyes. She couldn’t even read the big, giant letters at the top of the chart! The doctor asked her, are you driving? She said no, He said, oh thank god. Funny man. The lung transplant did a number on her eyes. Being on the ventilator for so long was a contributing factor and oh yeah, can you guess what else? Yup. Steroids. Imagine that. So, next week she will have surgery on her left eye to correct the cataract. They only do one eye at a time. Bummer in a way. Why not just get it overwith all at once. It’s not like she can see now anyway. But one it is. Minor set back for rehab, but that’s ok. She’s looking forward to seeing clearly again. Go figure.
Pesky little virus. I took mom back to the doc today since she’s still not up to par. She is mostly better, but having a ton of sinus trouble and is very tired. At least it’s out of her lungs and they are clear now. phew. The doc said that the sinus trouble is what’s causing mom not to smell or taste food. She’s so bored with it all. She forces herself to eat but she figures, why bother because she can’t taste anything. I’ve never known her not to be able to smell. She has a sniffer like a bloodhound. We discussed the RSV virus and the doc said it’s very possible that’s what she has since it’s lingering so much. She said it’s the secondary bacterial infections she worries about, so more antibiotics were given. She did tell mom to stay away from as many people as she could until she feels 100%. No sense in exposing herself to even more bugs. That means, no shopping of any kind, and we were just on our way to the grocery store after the appt. And no rehab either. So for now, she’ll just rest and rest and have to be satisfied by shopping from QVC. Oh Darn. It will be difficult but I think she’ll manage. *wink*
Now that mom is finally on the mend, the rest of us are sick. Me, Malibu, Lee & now my brother Scott. Such a bummer. We need one giant bed full of comfy blankies and gobs of chicken soup. Then maybe we’ll stop giving it back and forth together. We’ll just get it over with all at once. But we can’t hibernate like we want to. Duty calls. Good thing is that mom is feeling better. Hopefully she’ll be back at rehab next week. She’s missed quite a bit, so she’ll probably feel as though she’s starting over. But that’s ok. At least she’s doing a good job of taking care of herself and getting better.
A really great thing I noticed when I last took her to the doctors was when the doc said take a deep breath so I can hear your lungs. And Wow! She took the biggest, deepest breath I’ve ever seen her take. Ever! After her transplant she would try, but it would come out sort of like “sip, sip” really fast and shallow. We’d say, no like this…..and she would repeat, “sip, sip!” I thought she’d never get it. But she’s been practicing and what a difference. It’s so cool. Those lungs are really working! It’s all these great little accomplishments that add up to a whole new life. So exciting!
Now, for a little bit of sad news. Our friend from rehab, Rene’, passed away last week. We want to extend our deepest sympathies to her family and friends. She really supported mom (and me) when we were in Tucson going through “our” transplant. You’ll see all her comments throughout the website. It meant a great deal to us. She was on the transplant list for Tucson as well, then she got cancer and they took her off the list. It was tragic. She had such a big heart. She was really private and didn’t like to speak of herself and bring others down. She was the type that rather be uplifting to others and be there for you. Her good friend, (and ours), Karen, wrote a really great tribute to her and gave me permission to share it with all of you.
“She was such a neat lady. She was down to earth and her needs were simple. She loved animals more than people. [She did cat rescue]. Her main concern to the very end was the care of her pets. I’ll miss her very much. I’m just very sad that Rene’ couldn’t beat the cancer. She did such great things for everyone and all the animals. ”
She will be missed.