What Went Right This Week?

[jen-cueva]

How’s everyone doing this week?

I know many of you can relate. Mine, unfortunately, was short-lived, but that’s OK. I consider it a win either way. This week I am back in the 80s when my PH team prefers I use my oxygen 24/7. But I know it will continue to fluctuate, as I mentioned from day to day- some days throughout the day.

I’ve been walking Sasha, our mini schnauzer, twice per day M-F while Manny is working. We don’t walk far, but it’s much more than I was doing before. We had a big yard in Texas that I would just let her out. That worked well, especially when I didn’t feel like moving and going outside. But here in the condo, we have to walk to her several times per day. So, I’m getting more exercise, which is a win for me.

Have you rested more and listened to your body this week? Read any good books or watch any good movies that you’ve enjoyed?

Where are your wins this week?

[Colleen]

@jenc I didn’t know you dropped into the 80’s this week. Getting exercise is good but on days like this I bet it takes will power to take your dog for a walk. Maybe there is a teen or someone your know who you can have on call to take Sasha for walks when you are having a bad day?

[jen-cueva]

Hi @colleensteele, thanks for that suggestion. I also know there is an App called Rover and probably others for things like this. I know Rover is for dog walkers, boarding, sitting, etc.

I have yet to see many teens in my condo community. Mostly are younger kids. I know of one, and he is in high school, plays sports, and works, so he isn’t available.

Thanks for your thoughtfulness, but I did walk Sasha twice yesterday. The afternoon walk was cut short as I noted I had increased SOB. But, I was using my oxygen and increased it to 5L while walking. This goes with @dawnt’s question, too, about raising our oxygen flow rate.

How are you doing @colleensteele this week? Has your RA flare-up eased any for you? What weekly wins can you share? How are your parents? Is mom using the chairlift yet?

[Colleen]

@jenc my RA is doing a little better. When the temps drop at night and early morning I start to ache really bad again but ibuprofen has been helping.

My week’s win this week was finally getting Cullen to Seattle for his ECHO stress test he was supposed to have over a month ago. He has an appointment with his cardiologist in February and I’m sure she will go over the results in more detail than what we read in MyChart. It looks like his heart is doing well. Perhaps a little wear and tear but not anything that they felt the need to immediately call him about.

[jen-cueva]

Hi @colleensteele, I’m grateful that you’re getting a little relief with your RA. But, I know my pain is worse when it is damp, wet, or cold. So, I’m sorry that you are having those flares. Does this usually continue all winter for you, then?

Yay for getting Cullen’s stress Echo done. I hope and pray that you have a positive report when you follow up. But reading on his chart is helpful, although I know it’s not definite. Please keep us posted as you learn more.

[jen-cueva]

Yesterday Manny and I enjoyed most of the day at the beach. It was lovely and refreshing. I took a book and did nothing else except chat and enjoy the sounds and fresh sunshine. I didn’t take my phone out there, so I unplugged.

What went right for y’all last week or recently?

[Colleen]

@jenc I don’t know why but I felt emotional reading your weekend update. I pictured you our there relaxing and loving life and it made me happy. I’m really impressed that you didn’t take your phone. I’ve gone for drives and have done that. I’ll get home and someone will say, “I tried to call you”. Ooops, I forgot my phone…wink-wink.

What went right last week is that Cullen completed is dreaded statistics class and aced it! It was as hard as he expected it would be but kept at it and ended up doing well.

Yesterday was a beautiful day in the Pacific Northwest so me and the boys took our dogs outside and gave them a much needed grooming and bath. Our husky loved it but our jack russell freaks out the second she sees grooming tools and water. But, we got the job done and both pups look perty. LOL!

[jen-cueva]

Aww, @colleensteele, your response made me warm and fuzzy inside. You’re such a kind soul. It was such a lovely day, and I wanted to take in the smells and sounds without phone distractions. I’m setting more boundaries with my phone. It’s a work in progress, but I often leave my phone on the table if I’m outside visiting my neighbors, as long as Manny is home.

Those drives when you unplug besides the radio do you good. You’ll have the radio on if you’re like me, singing your heart to content as you drive along and enjoy the “me” time. Kudos to you for not answering your phone.

Fantastic job to Cullen for acing his statistics class! What a scholar he is! That’s w colossal win! Please tell him how proud I am of him for keeping at it.

Your day sounded lovely with the boys helping groom the dogs. (well, minus the freaking out, hehe) It’s great to get out and enjoy the beautiful days when you can, and amazing that the boys were there to help. WTG!

[Terry]

What went right this week.

Well got those cysts cut out around my eye this morning . Pretty painless except when I got home washed my hands and face and dried with towel forgetting about incisions causing one to bleed but alls good. Been wearing the hearing aid in my deaf ear. Its good. It is even hooked into my iphone so I dont have to put the phone to my ear to hear the caller . Actually had a bit of an issue with this. We were watching a subtitled film so I took the aid out but did not turn it off. Daughter rang from Thailand or wherever I answered forgetting aid on coffee table. Twice I told the boss must be problem with where she is as I cant hear her and hung up before I realised she was coming through my aid on the coffee table. Didn’t tell the not amused daughter when I rang her back ,must be her end.
Tadalafil kicked in with the macitentan after a month and I am no longer walking around puffing like a dog . Actually feel normal at rest now but I wonder sometimes if I am  expecting too much with energy levels and have to accept I can no longer wrestle crocodiles irrespective of how many tablets I take. Life’s good.

[jen-cueva]

Hehe, @terry, I’m laughing with you about the incident where your hearing aid was on the coffee table. You crack me up not telling your daughter that it wasn’t on her end after all.

Please be careful with the eye area until it heals. If you rub much at all, that area is tender, so it probably will bleed, especially right after having the cyst removed. Hopefully, this heals quickly, and you won’t have any more bleeding issues.

I’m happy to hear that the tadalafil is kicking in, and you notice some improvement. But, Mate, you shouldn’t be wrestling crocs, for sure. I think we want to push ourselves and often need to accept that we have more energy than others some days. But with PH and other health concerns, our limitations are continually challenged. Once we learn to accept this fact, we will find we are grateful for what we can do versus what we can no longer accomplish. It’s a difficult concept to grasp.

We are here to support you; we relate.

[Colleen]

@terry my dad wears hearing aids and I can tell you he has had many oops moments like you shared. God love him! I just laugh…I’m sure your daughter would too. Calling from Thailand though might be a funny later kind of moment.

It must be a relief having the cyst removal out of the way. So happy to hear that Tadalafil is making a difference for you. I know from my son’s experience, sometimes getting results from new treatments or dosages takes patience. Not easy when it’s your health at stake. So glad you kept the course!

[Cathy Brown]

I’ve had the best week in a long time. I feel like I sort of had a breakthrough last weekend. Like for almost two years since I got sick, I have been limping along, trying to put on a brave face for my family but honestly feeling sort of in shock and depressed about losing my old life. There’s been a lot of comfort food. But last weekend I decided I can start eating healthier, starting with one little habit a week. Like substituting an apple and almond butter for my normal afternoon hot chocolate a couple of days a week. I’m not giving up the hot chocolate completely! And then maybe something else the following week. I saw my PH doctor yesterday and asked him about pulmonary rehab and he said I should just do my own rehab. Start walking a little faster and a little farther and maybe lift some light weights. So I did a brisk 30-minute walk last night with my oxygen backpack, and it felt good. He wants me to switch from Uptravi to subQ remodulin but said I can wait until after summer so I can swim in our backyard pool. That will make the Phoenix summer so much better. He thinks I can probably make it another 20 years, which is the best news, because although I’m 59 years old, I have a 12 year old son. I want to thank you all for encouraging me to eat better.

[Colleen]

@catbrown way to go! Really, I understand how challenging self-care can be but you are accomplishing it. I think the way you are doing it in “baby steps” so to speak must help keep the goals realistic and manageable.

I know how 12 year old’s can be…but is there any chance your son will occasionally go on walks with you? That will might make the goal even more enjoyable, unless you prefer to make that your “you” time to clear your mind.

Congratulations on making positive changes to your health and routine!

[Cathy Brown]

@colleensteele, that’s funny that you mention my son. He’s not much into walking with us anymore, but his dad nagged him last night, and after I had already walked about a block, Theo comes racing up with our 75-pound dog that barks and pulls every time he sees another dog. After about a block of that craziness, I had him take the dog home and Theo decided to stay home with him. I really just wanted to walk alone anyway. I like walking with my husband and dog, but they are so slow. The dog sniffs every couple of feet, I swear, and my husband moseys. So I’m thinking maybe every other day I’ll do a “me” walk and then the other days go with the family. When Brandon (my husband) is out of town, I do all the dog walking and take lots of treats to keep Chili under control because I don’t have the strength anymore for that craziness. I swear my next dog is going to be tiny!

[Colleen]

@catbrown having raised two boys of my own and remembering what they were like as pre-teens, I had a feeling walks with mom might not be on your son’s to-do-list.

We have dogs too. I don’t mind walking our Jack Russell but our Husky gives me quite the workout. But when I walk it always is with a dog. Maybe I should try some “just me” time walks.

[Cathy Brown]

I have always walked with dogs too and enjoyed it. This dog, though, is the hardest dog I’ve ever had. He’s way too protective, so his barking at other dogs and sometimes people is not always friendly. I’ve gotten to where I make him sit and stay anytime I see a dog approaching. He’s very smart and tries to please, so he does this pretty well. But if I don’t see a dog in time, it’s the old lunge and bark routine. As you can imagine, this isn’t always the most relaxing walking routine. I’m always on the lookout for his triggers–dogs, bikes, scooters, people who say hello too brightly. I will say I never worry that anyone will attack me when he’s around. I was working with a trainer to try to get him under control but got overwhelmed with other things, and that fell by the wayside a couple of years ago.

[jen-cueva]

Hi @catbrown, I’m so happy to read about your changes, and this shift in mindset will undoubtedly offer a boost. It sounds like you are doing an amazing job trying to take care of yourself. Little changes are the best because we can stick to those better. I also agree with not totally giving up your hot chocolate.

I was going to suggest a family walk until I bread farther down your comments. So, “me” walks sound like the best option for you most days. Waiting until summer to transition to the pump sounds like an excellent plan. Would you be getting a wetsuit to swim in your pool next year? I can imagine it helps you stay chill in the sweltering Phoenix heat.

You’re doing such a fantastic job! If you stumble with your eating habits one day, start again the next. Try not to be too hard on yourself. Thanks for sharing such an encouraging yet inspiring update; cheers to 20-plus years, my PHirend!

[Cathy Brown]

A wetsuit! That’s a good idea! I was figuring after this summer, I would just give up swimming. I’m not used to having a pool anyway. My doctor says no swimming, but I’ve heard other people say they find ways to cover up and go anyway, so maybe I will find a way.

[Colleen]

@catbrown my son wore dry suits to go swimming. The only place that made them at the time, especially for children, was in the UK. We had to special order it and it was expensive but worth it! The only problem is the zippers eventually give out and start leaking and then you have to send it in for repairs.

I mentioned in a column how we got Cullen ready to go swimming when he had PH and was on Flolan. It includes a picture of him wearing one. Maybe I’ll dedicate an entire column to it in the near future. Below is a link to the column and a link to where we ordered the dry suits.

‘Phantom PH’ Haunts My Son Long After His Transplant

Hammond Drysuits

 

[Cathy Brown]

Thanks so much!

[ky]

@catbrown So happy to hear about your week and being able to enjoy the summer before you start the pump, our daughter was on the pump and before she got it we also went swimming and boating as much as possible. Our youngest is also 12 year old and we have two crazy dogs, a golden and a little aussie and I just wanted to ask if you tried, or heard of a gentle lead?

My 100lb golden retriever wants to pull us face first into the pavement.. I tried everything and I almost gave up walking him until my daughter in law told me to try a gentle lead, it pulls their head down and to the side… and ta-da.. they CAN’T pull.  Now I can walk both my crazy dogs without my arms getting yanked out of socket or getting dragged face first into pavement. Oh and my 12 year old can handle him as well now, When and If I can get him to walk with us,.. I usually have to bribe my son with an ice cream or soda to walk with me these days.

I just got the one at petsmart but there are many options on amazon etc. (I tried to link something here but I couldn’t get it to work for some reason) IF you decide to try it, just make sure it’s the one that pulls their snout down, the ones that attach to the chest didn’t work for me. (sorry for the novel, but I was really excited to find something that would work)

[Cathy Brown]

Thanks for the tip! I hadn’t thought about a gentle lead. He usually only pulls when he sees other dogs and then sooo much pulling and barking.

[jen-cueva]

I can’t believe it’s almost July! The temps are warming up, and most are getting out a bit more.

I have been trying to get back into doing a few simple exercises. That’s what’s going right for me this week. What about you?

[Vicky Olsen]

My win this week is getting my first appt scheduled with the Pulmonologist at the PH clinic on Sept 8. I looked him up and he is also the Director of the Lung Transplant Program (???). I am pretty excited!

[Colleen]

That is really good news @vicky1437! My son’s PH specialist was also a part of the lung transplant team. He will probably suggest you go through transplant evaluation. That doesn’t mean you will be listed at this time it’s would be to determine if you are eligible.

But first step first, discuss PH and treatment! I will be thinking of you on the Sept, 8th!

[jen-cueva]

Exciting news, @vicky1437! I’ll be thinking about you on September 8th as you have your first appointment. I suggest writing down any questions you may have between now and then. That way, you don’t get there and forget. If you have someone, go with you, especially at your first appointment. There’s so much information, and it can be overwhelming between that and your emotions.

Do you have any questions for us?

[jen-cueva]

Friday, my 18-year-old niece flew in for a visit from Texas. She had never flown alone or been to California. We enjoyed having her here and stayed busy all weekend.

We took her to the airport yesterday evening, and watching her go was sad. She is moving to college in 2 weeks, so she wanted a quick visit with Aunt Jen.

I bet she has her fill on the Pacific Ocean because we went to at least four beaches while she was here. Sunday, we celebrated a friend’s 50th birthday. We had a blast, but this Auntie crashed for a few hours once we were home from the airport.

I’m beat, but the memories are worth it and will last a lifetime. I love being an Auntie!

[Colleen]

Aww @jenc I’m sure your niece is starting college with wonderful end of summer memories with her Aunt Jen! I spotted a pic on FB of the two of you and I definitely see family resemblance!

So how did she do flying on her own? Any problems?

[jen-cueva]

Hi @colleensteele, thank you. Yes, we all will have such fun memories. She is a tad taller than me, and her show size is bigger, LOL. But she looks like my older sister(her mom) and has some glimpses of her dad.

She was trying to hold me up in that pic because there was a bit of a current pushing against us. She was our swim champion and into water polo until she injured herself a few years back at 16. It was so difficult for her, but she’s doing better now. Thank God.

She did excellent on her flight. It was a straight flight. So that helped. Leaving SD, she told me they did confiscate her toothpaste because she forgot to leave it here. She only had two carry-ons. I’m incredibly proud of her. She was to work in finance; she is excellent with money. She already invests in the stock market with her saved earnings from working as a hostess and server for two years.

[Colleen]

@jenc she sounds like an amazing and lovely young woman. It says something that she wanted to come visit! She must love her Aunt Jen very much!

[jen-cueva]

Thank you, @colleensteele. She is funny and usually pretty quiet unless her parents aren’t around. It always amazes me how that works, LOL.

She certainly is loved and loves both her Aunt Jen and Uncle Manny. I look forward to having her back. She loved the beaches and weather coming from the Texas Gulf Coast. But I think she’ll always be a Texan.

[Debbie Moore]

@jenc sounds like you had a wonderful visit. I love it when I have visitors.

I parked in the back and took the stairs up to the store today.  I only had to stop once half way up!  I usually park at the front of the store but no spaces today. I think I should start doing this every day.

[jen-cueva]

Hey @debbie, yes, it was so much fun and always great to have them visit. It was sad to see her go, but I know she’s on her next adventure to college soon.

Wow, what a great win that was, Debbie! How did you feel once you reached the store? Did you notice any difference during your time working compared to when you parked up front and no stairs?

That’s a huge accomplishment. I’ve been up a neighbor’s stairs once with my POC and stopped 3 times. I believe it was 11 stairs in her townhome. Usually, we gather on my patio, in front of the garages, or inside my house since it’s a single story. One step at a time, literally, hehe.

[Debbie Moore]

Once I was up I rested.  We keep a tall chair behind the cash wrap.  I did fine for the rest of the day.

[jen-cueva]

I remember I headed straight to the nearest chair to rest when I made it up top at my friend’s home. After regarding a bit, I was OK. Going down, I am good; it’s the up part, like walking uphill that incline is challenging. The sane at the beach is tougher, too.

Now I know why many run in the sand in the shallow water along the shores.

That’s still a huge win, Debbie! Thanks for sharing. Did you find out when you see the PH doc again yet?

[jen-cueva]

Yesterday my one and only child, my daughter, KK turned 30! Although we weren’t with her yet to celebrate she is traveling this weekend and enjoying life, as she should.

This is such an incredible win for me and all of my family. I was diagnosed, and my baby girl was only 11. We were told I would not be here in 3-5 years back then. I’m blessed beyond measure to still be PHighting and pushing through, now almost 18 years later.

Yesterday morning, I took a trip down memory lane when I was looking through my many photos of our little adventures through the years. I was in tears, but all happy tears to make each of those precious memories with her. I know we still have many more special memories to create.

Also, @debbie has a buyer for her store. She was worried about if and when it would sell. She stated in another topic, but since this was such an incredible blessing for her and her family, it’s a major win!!

Also, @brendad53 finally used her disability parking placard, which was a win for her in many ways.

Does anyone else want to share their weekly wins this week? It can be something simple. I wish you all a fun and relaxing weekend, do something that makes you smile!

[brenda-denzler]

Bonus birthdays. That’s what they’re called in Cancer Land. Any time you survive longer than your dim initial prospects suggested you would, you have bonus birthdays. Congratulations, Jen, on your bonus birthdays with your daughter. 🙂 May you have many more in the years to come, of your own and of your family, and may they come with you in decent shape to enjoy them all. 🙂

Yes, using my handicapped placard for the first time is a milestone. Bittersweet. Although I must admit….

A “win” for me this week is taking this low dose of prednisone! I’ve got more stamina. I have to sleep less (7 hours compared to 10 hours). However, I do have the munchies like crazy! Makes me wonder what the pharmacist actually put into those pills! 🙂

Congrats to Debbie on the sale of her business. Let’s hear it for the small businesses!

[jen-cueva]

Thank you so much, @brendad53, for your kind words and wishes.

We learn to celebrate the small and big victories with one another. Congrats on taking the Prednisone; it certainly makes me extremely hungry. I think of the Cookie Monster, LOL. How is the rash this week? Any relief?

I can relate to using the placard as a bittersweet moment. One day at a time, my PHriend.

[Colleen]

Awww @jenc your little girl turned 30! I know you are a long-term PH survivor but it really puts it into perspective when you mention how old KK was when you were diagnosed. What a blessing all 3 of you are to each other! Happy birthday to KK and big hugs to her loving and proud mamma!

I just want to say congratulations again to @debbie and way to go on an important step towards self-care for @brendad53.

Would love to hear if anyone else had something go right this week!

[jen-cueva]

Hi @colleensteele, I appreciate your birthday wishes for my KK. Also, it certainly puts things into perspective when I think of all the years and milestones we’ve been through since PH. Surreal to think about some days.

And yes, I think everyone knows I’m one incredibly proud Moma. She is a Daddy’s girl but her Moma’s world, as we would tell her.

I’m grateful for everyone’s wins this past week. Do you have any wins, @colleensteele? Did you finish that blackberry bush by chance?

[Colleen]

@jenc lol! Every week I accomplish a lot in the backyard but no, it isn’t finished. I joke with my neighbor that she will see me back there in the snow still clearing it all out. It will get done. I just can’t push myself and if I start doing that I’ll stop enjoying the work.

[jen-cueva]

Oh no, @colleensteele, let’s certainly not push it! Also, this week, I bet y’all are dealing with the same heat wave affecting us here. I’m ready to get back to our usual temps; I’m spoiled already, LOL.

Maybe the snow will kill them, does it not usually? So crazy how dang resilient those blackberry bushes are. Ahh, I think I may have a column idea because blackberries are my favorite berries. I may ask you some questions and add quotes from your experience trying to kill them, LOL. LMK if you would like to contribute to that column.

[Debbie Moore]

Happy Birthday KK!  Birthdays are wonderful no matter how old you are, but especially wonderful when your around to celebrate!  I love that you have hung around to celebrate birthdays.  Here’s to many more years for you and KK!

@brendad53 glad you used that placard.  I live in a small town, not many places to even use my placard, but I do.  It saves a little energy not having to take all those extra steps.  There is one parking lot in town that has their marked parking in the middle of the parking lot, not close to the businesses.  I’ve been meaning to go to the city and complain.  It is the parking lot for my oxygen tank provider. Hmm.. it needs to be fixed.

I have another win for the week.  My POC stopped working and a replacement for it is on backorder.  I asked my oxygen company could they let me rent one or rent an additional large machine to use when I’m at my store.  Being on 4 liters, the cylinders don’t last long.  They do not and cannot rent me a second machine.  But the good news is they said they would loan me a large machine to use until my POC was replaced.  How wonderful!

[jen-cueva]

Hi @debbie, yes, birthdays are lovely, aren’t they? Like you, I’m grateful I hung around and will continue to do so.

Yes, this does need to be fixed, Debbie. Hopefully, they can get this done much faster because you’re in a small town than in larger cities. Please keep us posted on how this process goes. City Hall visit, maybe?

That’s awesome that the oxygen company loaned you a machine until your backup POC arrives. Now that I think about the parking situation, you should be able to ask the oxygen company administrator about having one or a few parking marked for the disabled. I’m guessing each town has a different process.

[jen-cueva]

Hey y’all,
I wanted to check in and see how everyone’s week is going. What went right for y’all this week? Let’s share all the tiny victories.

My daughter, KK, is arriving later today and will be here through Tuesday. I’ll be off until Tuesday. But I may pop in at times.

I hope everyone is doing something that makes them smile each day.

[Colleen]

@jenc Enjoy the time with your sweet daughter! I am so happy for you!

I met with a neurologist yesterday and it was very productive. Honestly, it was the most listened to by a doctor I have felt in a while.

B12 was ruled out as the cause of my neuropathy but he disagreed. He said the bloodwork produced a low normal and that was when I started feeling improvement. He’s wondering what it was at when the numbness was at it’s worse. He wants me to start taking B12.

He also said I should be checked for diabetes. I was baffled! “I’m always checked for diabetes,” I said. Apparently, I have not had labs for that since 2016!! Oh my gosh! Way to NOT self-advocate for myself. I only look at the results that pop up as concerning and have assumed diabetes was being checked and was all ok. Anyway, going for those labs today.

There is some other bloodwork that hasn’t been done that he also added and he recommended a brain MRI which so far insurance has declined. Hopefully it will finally get approved.

How about that…a good medical appointment for the caregiver!

[jen-cueva]

Hi @colleensteele, thank you for your thoughtfulness. We enjoyed making more precious memories, including beach time, shopping, and a few coffee shops.

I’m so grateful to hear about your neurologist appointment. Hopefully, the B12 will help, and the labs will offer him other ideas. Once he has that back, maybe he will push to get the brain MRI approved. I’m sorry that insurance companies can be so difficult to work with sometimes.

[brenda-denzler]

Congrats, Jen, on your daughter’s visit. I know you’ll enjoy the heck out of it!

What went right this week? I got firewood laid in for the winter. I found out that my chipped front tooth was easily fixed–no crowns, etc., required! That’s a financial relief!

BrendaD53

[jen-cueva]

Hi @brendad53, WTG on getting your firewood laid before you need to start using it. Will that be next month?

That’s always a plus when dental work isn’t as costly as we thought it might be. Financial relief is always a big win.

Thank you, you know my daughter and I, well Manny some, too, enjoyed making new memories. I doubt he enjoyed the shopping. He was next door at a brewery waiting. Hehe.

[brenda-denzler]

I use two kinds of firewood, Jen. The traditional stuff everyone thinks about when it comes to burning in a wood stove. Once I have a fire going strong with that wood, which is rather expensive–and getting more so!–I use railroad tie ends to burn. That’s what I had to gather. To get it stacked under my racks (with roofs) so it can continue to dry out from rain, etc., before I actually have to burn it.

Note: There is a railroad tie-making yard near where I live. They take the long, thick timbers used for railroad ties and cut them to size. Then the properly cut ties are sent out to be creosoted. The tie ends that were cut off, however, are NOT creosoted. They are excellent firewood. It’s scrap for the tie yard, so they sell it to folks like me, who will use it for heat.

I paid $170 for a large truckload of traditional firewood this year. I paid $23 for a large truckload of tie ends.

[brenda-denzler]

BTW, gathering that firewood was harder than ever. For the first time, I had to lie down in the dirt at the tie yard to give my heart a break, I became so exhausted.

[jen-cueva]

When @brendad53 shared how she had applied and now used her disability placard, we talked about how these things make us feel.

This week in @colleensteele’s column, she says, “When it arrived, it felt like we had received a sympathy card, and attached to it was a parking spot instead of flowers.”

You can read the entire column here.

That line resonated with me as I cried the day I got mine years ago. How did it make you feel if you applied or already have a disability placard or license plate? Do you use yours as an educational tool, like Colleen mentions?

[brenda-denzler]

I haven’t had much opportunity to use my handicapped placard as a teaching tool, but…. In the few weeks that I’ve had it, I’ve learned how to use it more comfortably.

If there is an open parking spot near the handicapped spots, I will take it and let someone who is more limited than I am have a shot at the handicapped spots. It makes me feel good to know that I’m helping out someone who’s worse-off than I am.

On the other hand, I will use the handicapped spaces when I feel I need them, and I don’t feel too self-conscious about it. At those times, I think of myself first, and others second, because I need to then.

So I feel I’m learning a decent balance between denial and acceptance.

[jen-cueva]

Hey, y’all, how’s everyone doing this week? How was your weekend?

It was wet and stormy here in San Diego all weekend, and still raining as I type. I realize we need the water, but not all at once. I hope it will be done soon.

Last week, my wins were 1) we didn’t float away or flood and 2) I managed to keep from being admitted to the hospital. However, I had labs done 4 times now and see my nephrologist tomorrow, and you guessed it, more labs.

Let’s hear your wins from last week. What went right, or what do you feel best about from last week?

[brenda-denzler]

Let’s see…..

I got the rest of my perk field cut back and about half of the cut saplings picked up and put in a brush pile.

A friend came over and replaced the board on my deck with the big “fall through it and break your leg” hole in it.

I got the doggie car seat covered washed and dried and put back in my car, then tried to take my second dog for another short ride and, sure enough, she threw up on it again. <<insert deep sigh here!>>

I got a new computer set up without undue hassle. Had to get it, as my old one is on the very thin edge of dying. So I dug out the credit card (again) and bought it. Now if only there were plenty of $$$ to pay the credit cards! But I make some money with my computer, so not having one to use was not a real option.

I talked with. my blood doctor about how my blood doesn’t give up its oxygen and asked him to be cogitating about what could be causing this, and I think he has an idea. And if he’s right, the “impaired systemic oxygen extraction” thing could be a little bit fixable, I think…. Maybe?

Jen, I hate like heck to hear that your kidneys are in such bad shape. Is this a result of all the PH meds you’ve been on over the years, or its own rotten turn of health?

I’m interested in how our Mate in NZ (isn’t it?) is doing. Any words?

[jen-cueva]

Hi @brendad53, it sounds like you had a productive week. Whew, I’m tired after reading it, hehe.

Thanks for your well wishes. My kidney disease is most likely due to the high doses of diuretics to keep me out of heart failure. I’ve been weaned down as far as I can without retaining too much fluid. This usually keeps my kidney disease at stage 3. Plus, I had retained an extra 6-8 pounds of fluid in a few days. However, any little thing can throw them off balance. So, that’s what we are dealing with now.

I see my nephrologist today, so we will know the plan and hope they return closer to my baseline. I hate that my buddy Cullen is having kidney issues @colleensteele. Please keep me posted on when he sees the kidney team. I’ll be keeping y’all in my thoughts and prayers. Tell him only outpatient visits, no hospital stays. I agree.

How are our PHriends @terry, @traceyaustralianmigration-co-za, at @cdvol3gmail-com, and @catbrown doing? I know @cdvol3gmail-com wasn’t feeling her best last week.

[Cathy Brown]

@jencueva Sorry to hear you’re having kidney problems! I hope they can get it under control. I am doing well. My doc switched me from Uptravi to Tyvaso DPI in December, and it’s been such a relief not having all those Uptravi side effects. Now I have some coughing, but it’s better than the headaches and nausea I was having. I’ve been having some back pain from carrying a backpack with an oxygen tank, so I’m seeing a physical therapist tomorrow to see if they can help me. It’s the decent weather season in Phoenix, so I’ve even done a couple of short hikes!

[jen-cueva]

Hi @catbrown, I’m happy to hear that the Tyvaso DPI works better for you with fewer side effects. That’s only been about a month since you switched from Uptravi. Did you notice immediate improvements in those GI side effects? I experienced that from Orenitram, so transitioning to Uptravi was better than the Orenitram side effects. Isn’t it strange how our bodies react so differently?

I am tagging @carol-alexander because her doctor switched her from Tyvaso to the DPI form. I don’t know how she’s doing since she has not updated us lately.

Maybe the PT can offer some suggestions, as I know carrying an oxygen backpack can be heavy. When the kids have those heavy book bags, they struggle with back and shoulder pain. Cough is the worst side effect I’ve heard from that one. Please keep us posted, and I pray you continue to find the Tyvaso DPI working for you.

Have you been hiking before, too? I told Manny that’s one of my goals. Living in San Diego, there are so many hiking trails. If the rain stops, I’m working on increasing my bike rides first.

Thanks for your well wishes; my kidneys are slowly returning to my baseline. So grateful they aren’t trending worse.

[jen-cueva]

Hi @catbrown, how have you been doing lately? You’ve been MIA, so I wanted to check in and see how things are going.

PLease update us when you have a minute. Hopefully, you’re staying busy with fun things.

[jen-cueva]

Hi @catbrown, I am sharing a response that @ripple76 had trouble posting last night. He also shares an update for the week. He said, “This topic was well responded. Cathy Brown – do you go to Arizona Pulmonologist Specialists for treatment?

This started out to be a terrible week. It began with not sleeping well on Sunday night then developing diarrhea for the next 24 hours resulting in an INR out of range. My oxygen tank delivery was delayed for three days. Following that my wife wasn’t feeling well. Then my television reception went haywire. But what went right is that the recovery from diarrhea back to normal occurred today, Thursday. I slept well last night and had my usual uplifting lunch with old AF friends. My wife is feeling good and the house is getting cleaned. The threat of more snow went away and the change in my 50′ tubing makes things easier for me around the house. And I solved my tv problem. Overall just normal living for us folks.

Jen, do you not sleep with supplemental oxygen? I check my O2 twice in the morning and once at night. I will tend to continue breathing deeply until I get to 98%. Probably cheating but it insures I am getting the flow I need. Earlier in the week I was emotionally in the pits but getting out makes helps alleviate that.

Well hope all ya’ll have things go well till next time.”

Thanks for the update, Randy. I am sorry that your week started so crappy. However, I’m grateful you shared that the end of the week was much better. Hugs, love, and prayers for you and your lovely wife as you enjoy a much better weekend and start the new week.

BTW, Yes, I continue to use oxygen at night.

[brenda-denzler]

Hey, @ripple76, you bring up an issue I hadn’t solidified, in my head, into a question. HOW you breathe.

You mentioned breathing deeply until your O2 sats were 98%. If I sit and concentrate on breathing and, thus, breathe more deeply, my sats are better. But when I breathe normally, they drop. I know I’m breathing both more shallowly, at such times, and take breaths less frequently then, too. Is this a typical PH thing? Or is it my peculiar way of breathing? Maybe a bad habit?

[jen-cueva]

Hi @brendad53, you hopefully will learn some new breathing techniques at rehab. I know before I would not breathe deep enough or, like you, take shallow breaths.

Learning to pay more attention to how we breathe does help not only breathing but anxiety and stress.

When do you go back to rehab this week? Mention to them how you feel you are breathing and ask the RT for breathing techniques you can learn to oxygenate your body better. It doesn’t always increase one’s O2 saturation but is more likely to help improve it.

I remember thinking back in nursing school, “people need to be taught how to breathe,” which sounded wild. I thought we were born and took our first breath, and that was how we learned to breathe.

But it’s incredible the things we can still learn despite our age; yes, breathing is one.

[Colleen]

Well, @brendad53 had the kind of week I had planned to have but didn’t – a productive one. To be honest, I was in a funk last week and couldn’t shake it. The most important thing that went right for me last week was Cullen’s safe return home.

@jenc I’m afraid your buddy Cullen’s kidneys have decided to start acting up too. At least that is what he thinks is going on. He returned home not feeling his best. He has labs scheduled for Monday and I’m trying to get him in to see the nephrologist asap – they are closed for MLK so I will have to try again tomorrow.

Clinic appointment and labs are one thing but both no hospital admissions allowed for either of you – deal?!

[brenda-denzler]

<<Hugs>> for Cullen and for Jen, with special doses of love for their kidneys.

I used to joke about something being so expensive I’d have to sell a kidney to pay for it. Then I realized I needed to tell my kidneys that I wasn’t de-valuing them by saying I’d sell them, as if they were only spare body parts so they could quit functioning. I was in fact making an oblique reference to how valuable they are–that they are just so important that they would bring a pretty price. Then I’d just pat my lower back and send some love.

So…pats on Jen and Cullen’s lower backs, some words about how valuable those little kidneys are, and a bunch o’lovin’. 🙂

[Terry]

Hi Y’all, Sorry doesn’t right out of an Aussie mouth.

G’Day , What went right ? I’m still here and breathing , the sun is shining , and the boss is keeping me active. Oh , that is except I have put on 3 kgs. ,  cracked ribs and torn back muscles. Don’t know how I put on the weight .Wouldn’t be all the chrissy treats ,na. The other ,well last week in my rush to go sailing on a windy day with grandson there was too much talking and as I went to step onto the boat without looking after  releasing the dock lines  the boat moved out I stepped into nothing falling onto a winch (cracked ribs) and in hauling myself back on board instead of dropping into the water and swimming around to the ladder I  heard , felt , a tearing sound in my back.  Still went sailing though. Went to dockside cafe after for coffee where lovely young lady got me a bag of ice to put on ribs and suggested I take some deep breaths .What ! I can hardly breathe ,pain in back below shoulder blade  , I’m in pain and you want me to take deep breaths. I smiled and thanked her . See what a nice bloke I am . SeeY’all. wink.

[brenda-denzler]

You DID go to the hospital, didn’t you? To get checked out? Taped up? Scolded?

 

[jen-cueva]

G’day Mate @terry. I have to laugh at your use of “y’all,” hehe.

It sounds like you have been enjoying coffee and treats. I am sorry o hear of your fall. Yes, I have cracked ribs from coughing several times. It is painful to breathe, especially when we are already struggling.

I guess you are black and blue, too, along with that horrific pain.

Yes, you are a pretty nice bloke, funny, too. Take care of yourself before that lovely wife gets a stick after you.

[Colleen]

@terry I’m sorry for generalizing like this but what is it with guys not going to the hospital when it’s possible they have seriously injured themselves? My husband and youngest son are like this. I get a paper cut and I’m ready to jump in the car and head to the ER. LOL!

Geez Terry, I hope you eventually had your ribs and back looked at by a doctor?