What Went Right This Week?

[jen-cueva]

What a wonderful post, @colleensteele. I am proud of you for making your appointments and keeping them. Yes, you caregivers need to focus on your health to better help those you care for. Too often, caregivers’ needs are found at the bottom of the to-do list and often neglected!

WTG, Colleen!

This week, I am grateful to be back “on the. grid”. I was lost without my internet and things. But, finally, I gave in and rested when I thought that I could. Things were left undone, and I made progress on my less is more approach.

[jen-cueva]

So, I have noticed that we haven’t been sharing some of our weekly wins. I wanted to bump this up so others can share their wins for the week. Last week, I finally got an in-office visit with my PCP.

I have been trying to use a timer for tasks, and that was helping me last week. Yesterday, I think I overdid it, so today my tasks are fewer and still behind. But, every day, I know that I am stronger. That is OK if it is not all day.

What small things are going right for you this week or last?

[Colleen]

I like the timer idea @jenc. Might have to try that myself! Geez, those in-office visits are like a rare sighting of a endangered species. So happy for you that you got that appointment. Cullen just had an in-office appointment with his cardiologist last week and an telemed appointment with lung transplant this week. Both went very well. They are happy with how his heart and lungs appear to be doing.

Some of you might remember that Cullen has struggled for a long time with his blood pressure. Knock wood – it has been doing so much better for the past month. We decreased one of his transplant meds because the levels were reading too high in his labs. That change I think helped, that and his dedication to a low sodium and no caffeine diet.

[jen-cueva]

This is so important to remember. Thinking about what went right can help us get through the weeks.

I know some days, maybe weeks, it may feel like everything is going wrong. Believe me, some days, you may want to go back to bed and start over. We all have those weeks; you’re not alone.

So, what went right last week, and what things are you doing to try and make this week a bit smoother, too?

For me, I am using that 25-minute timer for specific tasks. I did clean out my seasoning cabinet over the weekend. That is often something I try to do and has been overdue. I also had Manny drop off 2 large trash bags of clothing and household items to Goodwill that I had been filling for several months.

This week, I am working on going with the flow a bit more and offering myself grace. What about you?

[Colleen]

Honestly, what went right last week was successfully handling something that could have gone very wrong. I messed up and waited longer than I usually do to refill a few meds for Cullen. He still could have received them on time except the refills ran out and the mail order company said by the time they would get approval Cullen would have run out.

So, I frantically called the doctors and after a lot of phone tag, got them filled at Walgreens instead.

I wish I was accomplishing as much around the house as you are Jen. I’m impressed and envious.

This week is a big week of important appointments and tests for Cullen, so I’ll be busy with that starting tomorrow then Thursday.

[jen-cueva]

WTG, @colleensteele! YOu did what I have done at times with Manny’s meds and once with one of mine. When the mail order cannot get them fast enough, I have them order a month at Kroger, and then the other three-month supply comes in.

The only issue that I have had is that once my insurance did not want to pay. So, I then this a one-time courtesy fill it either did the 90 days supply. Did you have any issues once you filled it at Walgreens? Did you go ahead and get the 90 day supply?

LOL, don’t be too impressed; I have not yet been back at that stuff around the house.

I am sending extra love, hugs, spoons, and prayers this week for you and Cullen, both as you deal with these post-transplant appointments.

Thanks for sharing. Does anyone else want to share what went right this week? It is early on, so you have time.

[Colleen]

@jen-c insurance would only allow a month supply from Walgreens. I hope to return to mail order and the 3 months supplies.

[jen-cueva]

Hi @colleensteele, that happened to us only once where they wanted to do a one-month fill. Because Kroger is a 90-day in-network pharmacy for us, they allow it there. But Walgreens was like you experienced. I’m grateful that h=you could full it in time and get it there temporarily. WTG!

What’s going right in your world this week, my PHriends? It doesn’t have to be related to medical issues. Let’s hear about the positives.

[jen-cueva]

So, last week, I am happy to share one of my wins. I finally had the brain MRI that the post-COVID neurologist ordered.

That and also that my husband, Manny’s cataract survey went well. His eye is healing. Now, only if I could get him to listen, LOL.

I will have more wins to share the new week ahead. I look forward to hearing your wins. What went right for you last week or over the weekend?

Oh yeah, Saturday was rainy and gloomy, calling for a long afternoon nap. I count that as another weekly win.

Let’s hear your wins.

[Randolph Reynolds]

I thought I’d jump into Colleen and Jen’s conversation.  This sub-forum reminds me of Weekly Hits and Misses put out by the Wall Street Journal.  So far this week I am grateful that under the circumstances I am maintaining my mobility and my thinking.  The latter is the real challenge.

My latest INR came out well within range opposed to what it was two weeks ago.  3.8 was dangerously high and our Coagulation Clinic agreed we needed to make adjustments.  It had been going up each month.  This is important but blood thinners are fickle and the only suspect in that high reading was diarrhea that I dealt with for three days just before the last blood check.  Remodulin is part of the culprit.  So today was a hit.

We have had two power outages in one week that forced me to be on my oxygen tanks.  This is a serious problem.  No power to my concentrator or cpap.  Usually these outages last about an hour but fortunately I was able to get a replacement tank so that I could go to get my INR checked.  I order my tanks a week at a time.  So that was a hit.

Now I am set to go out every day this week and that is good.  Another hit.

On a side note: I read Tracy’s continuing story.  One can only pray that she will be successful in her choice.

[Colleen]

@ripple76 life in general tends to be hit and miss but add illness to the journey and the scales are all too often off balance.

For us just getting answers to a problem and finding a way to deal with a challenge is a big hit. What you shared is a good example of this.

I actually felt some anxiety for you when I read about the power outages because I know how much of a big deal it is when you are on oxygen and cpap. We have a small travel generator that has come in handy a number of times. Do you have one?

It sounds like you managed to hit those misses out of the park with some good old self-advocacy and planning. Thanks for sharing Randy!

[jen-cueva]

I love how you did this, @ripple76. It sounds like your hits were pretty good this week.

The power outages, so not much and a concern, certainly. I have had those at times. Thankfully we have a small generator that will run my oxygen machine and a few other things when needed.

As Colleen mentions, you did knock these hits out there, all with a bit of self-advocacy. Interestingly, the next column that I am working on is about this topic.

Keep up the hits, and I hope no more power outages for you. Does this often happen with the threat there? Can you get a generator that may help run your oxygen, at least?

[Roxanne Giustini]

I haven’t posted in a while but I had a “weekly win” yesterday. In June I had a week long Lung Transplant evaluation with Duke and was told at that time that I am early to consider a transplant. I had my follow up and more testing  yesterday and I am still good. They told me everything looks ok and some things even improved a little. So barring something changing in how I feel, I don’t need to follow up for 6 months! It feels so good to know that trying to live my healthiest lifestyle (while still enjoying life) is paying off! I truly feel that finding the right balance between being cognizant of your issues and limitations and living life to the fullest and having fun makes all the difference!

[Colleen]

@rgiustin this update made me so happy and it’s great to hear from you! Congratulations on such an excellent evaluation.

Although you are not eligible for transplant right now – and I pray you won’t be for a LONG time, it is good that you went through the evaluation. If there comes a day when you need to be listed having all ready gone through that week long process of tests will save you and your team a lot of time.

I know because that was my son’s experience. There would be things that need to be redone but if you keep up with the evaluations, there won’t be many.

But again, I mean it when I say, congratulations on not needing to be listed! You are obviously doing an awesome job at taking care of yourself! Keep it up!

[Roxanne Giustini]

Thanks so much! And yes that’s exactly why I did the evaluation now. My pulmonologist said the exact same thing, that it is much easier to get listed when you need it, if the team is already familiar with you. This is such a wonderful and supportive environment and I’m so grateful to be able to share everyone’s experiences!

[jen-cueva]

Wow, @rgiustin, that’s a huge win, certainly! I know those tests and things took a lot of time and energy, but now, as Colleen mentions, you have done those if needed later.

But, the improvements are what is so exciting! I am glad that you did pop in and share this with us.

I applaud you, and thanks for sharing the reminder to finding that balance with staying mindful of our limitations.

Keep it up, and feel free to pop in more often and share what you have going on.

[jen-cueva]

I just wanted to update y’all on my brain MRI. Although I had it done just before we left Texas, it took a few days to hear back. But the positive news was there was less concern on that MRI than my previous one just after COVID.

The confusion lies when we don’t know if the effects on my brain are all COVID or from previous syncope episodes where I hit my head. My take is that it is more COVID-related because my MRIs before my COVID bout were not showing much.

Being COVID-related, my brain seems to be showing improvements which is what I am so excited about. Although some areas are still showing up, it is much less than my previous MRI. At that rate, I think it takes time to recover. This month is the year that I was diagnosed with COVID. It was not long before Thanksgiving. So, I am well ahead of schedule, according to my neurologist.

What wins can y’all share? So much to share this week, but reading the various perspectives in the 30 Days of PH for me is a huge win. I find so many inspiring stories, thanks @colleensteele, for leading this project and your passion that shows.

[Roger Bliss]

Been having a good couple of weeks. Got my lung drained on Nov 23rd. There was only 1 liter of fluid. It has steadily gone down every month from 2 liters. The doc asked if it is getting old getting it drained every month. “YEAH!!!…..what do you think”?? He said they can put a deal in so I can drain it myself. After talking to my oncologist today it’s going to happen. Just gotta make an appointment to get it done.

My oncologist and his nurse were totally amazed at how good I looked. From the reports he got from Alaska, they thought I would look like crap. They were talking some kind of infusion (I can’t pronounce the name of the drug, let alone spell it) for my CLL. He agreed to getting the tube in to see if the fluid keeps going down, I won’t need the infusion.

Hopefully I can get the drain in this month, then have an appointment with my oncologist on Jan 27th to see how things are going.

Please note all this pertains to my cancer NOT PH. So don’t worry that it will happen to you.

[jen-cueva]

Hi @wheeldog, this is an awesome weekly win or lifetime win, in that matter! I am so happy to read that you look much better in person and are doing better than they thought.

Hopefully, you can have that procedure done to drain the fluid if needed. It sounds like maybe that will not be an ongoing issue for you. Plus, not requiring that infusion is a huge win! I hope and pray that this all works out well, and you won’t need to drain any fluid and no infusions, either.

Thank you for sharing such positive news with us. I hope you celebrated after this appointment with a nice cold beverage of choice and some good food. Please let us know when your procedure is scheduled.

Does anyone else care to share what went right this week? I think the best win for me this week was our Zoom meet-up. It was amazing to see you all there and enjoy such a great conversation.

How are things this week, @jimi,@rgiustin, @dawnt, @ripple76, @indihomaaol-com, and @carol-alexander? Others feel free to share, too. I thought of a few to tag. Do you have something that went right for you?

[Dawn]

Hi @jenc. I appreciate you checking in on me. I’m actually doing better. I realized I wasn’t being totally honest with myself about how much my depression was acting up again, have been having more video appointments with my therapist and things are doing much better. I can be so hard on myself at times, it gets me into trouble with my depression every time I do it. I’m much better at catching it than I used to be, but this time it just got ahead of me.

I would say something that went right for me this week is seeing the continuing results of being easier on myself. It always amazes me when I have a flare up of my depression, that when things get better I realize that nothing ‘out there’ has really changed. It’s what’s inside me, and my thinking, and choosing to be my own best supporter. I’m even doing better with my thinking in relation to my ph, although that turnaround is taking a bit longer!

I hope you are doing well, Jen, as well as Colleen and everyone else on the forums.

[jen-cueva]

Hi @dawnt, your weekly win has me all smiles this afternoon. I know how challenging it can be to take it easy on ourselves. WE tend to offer grace and patience with others but are so tough on ourselves. I’m happy to hear that you caught things and worked through your depression with video calls with your therapist.

You bring up such an important point. Changing our mindset is often the difference we need in many other areas of our lives. Kudos to you, Dawn, and thank you for sharing. Learning these valuable tools, as you mention, not only helps your depression but your PH mindset, too.

I am doing alright, thanks. Take care, my PHriend, and keep us posted.

[Colleen]

@dawnt it’s so nice to hear from you! I’m sorry you hit some bumps in the road but look at you getting over them! Acknowledging what you have been through and recognizing where things went wrong is amazing advocacy on your part. Always remember, whether you are in a good place or a bad one, we are here for you. We might not always have the answers but we are great at listening and offering genuine understanding that life with PH can be so hard both physically and mentally.

I am doing well and so is my family. Thank you for asking!

[Jimi Mcintosh]

I am still adjusting to my “new normal”, I have lost 42 lbs on dialysis, it’s 3 days a week , usually 6:30 to 10:30 AM. As a result of not being in compliance they are putting me on Eliquis, no more Coumadin, no more diet restrictions. Breathing is improving, hope to reduce medications.
praying for a kidney transplant, new lungs, new heart. I do not know what tomorrow holds, so I am enjoying every minute  .

I have my covid booster, wearing a mask, using a new BIPAP , got more room in my clothes and beginning to walk more.  Given up on “instant” gratification, going slow, with each new ache and pain.

I am wishing everyone a Very Merry Christmas and together a great New Year. We have proven that thru “Faith”, we continue to survive.  We are a special breed of people that refuse to roll-over and quit.   To those like Tracee, tomorrow is a new day and it is your day to claim your victory and continue to be an active part of your treatment.

[Colleen]

@jimi I asked in my previous post how you are doing and then I found your update. Congratulations on the weight loss and feeling a bit better! So is your doctor thinking about listing you for a trip transplant – heart, lungs and kidney? My son might be facing a triple in the future because his doctor is concerned that by the time he needs a kidney transplant his transplanted heart and lungs might have declined too. You know I wish you well and if a transplant is in your future I will keep that in my prayer intentions.

We are a special breed, both PH patients and caregivers. Merry Christmas to you and yours!

[Jimi Mcintosh]

How about a holiday “Zoom meeting” ?

[Colleen]

@jimi I love the idea but due to staff vacations and BioNews being closed during certain times for the holidays I don’t think we will be able to in December. We hope to continue offering the Zoom meetings, probably one every two to three months.

How are you doing? Any plans for the holidays?

[jen-cueva]

@jimi, I am happy to hear that your breathing is much better. I am sorry that you are now waiting on a heart, lungs, and kidney transplant. Are you listed already or did your PH team mention that they plan to list you in the near future?

I am grateful that you are doing better on the Eliquis and have no food restrictions. Do they have you follow any diet for your kidneys?

Instant gratification is something that I struggle with; I love that you mention, you have given up on this and taking things slower. I am trying to do this, too.

You are certainly of a different breed. Our PH forum members are all in that group. Faith has undoubtedly shown us all how much more we can push through. Thank you for your update and kind words. I’ve been thinking about you.

As Colleen mentioned, a holiday zoom is probably not in the plans, but I look forward to seeing you at the next one soon.

Happy holidays to you and your family, Jimi.