Spring

[jen-cueva]

Hi @brooklyn, yes, springtime indeed blooms with hope. You may have an interest in posting there since you love spring! I’m sharing a topic about warmer temperatures and self-care activities.

Spring is always something living in places with harsh winters can’t wait to start seeing the first signs of spring. It sounds like this may be you. Thanks for sharing your thoughts, and that hope and optimism bloom around you.

[Paul]

Thank you will do.  Which forum is that?

[jen-cueva]

Hi @brooklyn, sorry, I forgot to add the link to that topic. Here you are. Feel free to share your thoughts on that topic as well as others, too.

Below is the link to the self-care activities as the temps warm.

Self-care as temps warm

Thanks much for the reminder to add that link. We need a village most days, hehe.

[jen-cueva]

Hey @brooklyn, how are you doing? I hope you’re enjoying some one days outside.

@kygon, I’m sure y’all are deep in baby stuff. But I wanted to check in and see how y’all are faring. Is Bryan doing alright this week?

@dawnt, it’s been a few weeks, and I haven’t seen you post an update. Are you feeling any better the last few weeks? How’s your weather doing there? I know you look forward to some warmer temperatures, too.

These last few days in San Diego have been more like summer days. However, I’m not complaining. I love the sunshine and warmer temps.

I’m excited to spend some time outdoors this weekend and, if I’m feeling up for it, maybe even embark on a short e-bike ride. Do you guys have any plans for the weekend?

I hope y’all have a relaxing and “feel good” weekend. Don’t forget to do something that makes you smile! Yep, eating ice cream counts! 😀

[Dawn]

Hi @jenc, sorry to be absent so long. I plan to post, but am still fighting what feels like overwhelming exhaustion and I end up giving in to the exhaustion.  I finally started my 2 i.v. treatments for the lung infection 1.5 wks ago, and started the 2 oral meds last week.  So far no side effects to speak of, but no real change in how I feel yet either. The infectious disease dr had said it could be weeks or months before I feel noticeably better due to the amount of infection in my lungs.

I saw my cardiologist Friday for a regular check in, and he was very concerned about my heart rate and edema in my lower legs. The i.v. meds are increasing the edema I’ve dealt with for years, but not to an extreme extent. They did an ekg, which they usually do after I’ve seen the dr, but they did it before I saw him this time. Having just walked in from the parking lot, then to the waiting area, then to the meeting room, I had no chance to get my breathing and heart rate calmed down at all.  I explained that to the dr, but he said looking at me I looked like someone who should be in the hospital.  I don’t want to go into the hospital, and don’t want them messing with the meds for the lung infection.  We increased my fluid pills, and I see the dr again this Tuesday. I’m going to fight going into the hospital, I think things are going fairly smoothly with the new meds and they need time to work. I am going to suggest he give me an order to rent a wheelchair or scooter to use so I don’t push my heart rate to the extreme.  It has concerned me as well, but with as full as my lungs are of infection I know it will take some time for my breathing to ease up.  He told me to take 1-2 wks off from work, and no physical exertion, and just rest.  I’m ok with that because getting on a schedule with the i.v.s (one is every 8 hrs and runs for 2 hrs) has really interfered with my usual sleep schedule. I don’t do well with less sleep!

So, that’s where I am currently. Hanging in here, but he really caught me off guard and it threw me. I’ve had time to think about everything and have some questions ready for when I see him Tuesday.  I hope everything is going well for you, Jen. Take care.  Well wishes to everyone.

[jen-cueva]

Hi @dawnt, no need to apologize. I’m sorry you continue to fight this exhaustion. I can relate to the overwhelming feeling when it takes over. With my recent COVID exposure, I am still fighting the fatigue. I was so mad the weekend that I slept through most of it; after doing that Saturday and hard sleeping, I still didn’t wake up Sunday feeling like Superwoman.

Now, I’m concerned about the extra fluid and your breathing. Did that do any better over the weekend? Does keeping your feet elevated help at all? It may or may not be if it’s the new medication added to it.

Have you taken off work already? How long will you be off? I hope that helps, and yes, a wheelchair would help, too. I often use mine when I go to appointments and have to push a little they sit done and wheel like that, LOL. Usually, it’s only for when the parking spot and doctor’s office are far apart and I am not feeling my best.

I’m sure you’ll b exhausted after your appointment, but please check in so we know you stayed out of the hospital and any other updates. I’m sending you extra love, hugs, spoons, and prayers, my PHriend. I’m so sorry you are struggling so much right now.

[Dawn]

Hi @jenc, my appointment today was much better than last Friday’s. The swelling with my lower legs pretty well cleared up yesterday afternoon, and it would resolve overnight too. I think my body is just getting used to the new medications.  I’m staying home this week, and next week. It is making a difference with getting some good sleep. Getting on a schedule with the i.v. that is every 8 hrs messed up my sleep schedule big time but it’s getting better with a little adjustment on the timing for the evening i.v. – ok’d by the home health nurse. My cardiologist was very pleased with the changes from last Friday to today, and we had no mention of the hospital today! He also suggested I work from home 3 days a week, rather than the 2 days I do now, so I’m checking on that possibility.

I hope your fatigue continues to improve, Jen. Thanks for checking on me.

[jen-cueva]

Hi @dawnt, thank God you got a positive report from your cardiologist. No hospital is a blessing, and I know you were frightened that was a possibility.

Your breathing must be improved with the extra fluid. Have you noticed a difference?

Yes, your body will take some time to acclimate to the IV infusions with some time. Sleep is critical, so grateful that you are catching up on your sleep.

Hopefully, working from home that extra day per week will work out and help once you return. I bet your boys are happy to have you home more.

Hugs are coming your way, my sweet PHriend. Take it easy and keep taking care of yourself. Please let us know how we can best support you as you continue this new journey with IV infusions.

[jen-cueva]

Hey @dawnt, how are you managing this week, my dear PHriend?

Are you back at work? How is that going?

Please know we are thinking about you and sending you positive thoughts and prayers. Check-in when you have a minute, or feel up to it.

[Dawn]

Hi @jenc. As my doctors told me, this treatment has been very rough. I went back to work in office one day, have been working from home since then. I did get approved for fmla by my employer so can take some time off if/when I need to. The medications for the lung infection are causing side effects, but compared to what I read online prior to starting the meds it’s not been as bad as it could be. A constant nausea, but the meds for that would interfere with my other meds so I’m just dealing with it. No appetite, which is something new for me! Also the need to stay close to a bathroom. Between the schedule for the i.v. treatments, home nurse visits, supply deliveries, appointments, it just seemed better to work from home.

My breathing has been bad, which is scary, but the infection meds cause edema. I was already on medication for edema, so we just increased the dosage. My recent INR was 6.3, which isn’t good. We got it down to 4.5 as of  last Friday and I see my co-ag lab person again Wednesday. The meds are causing low potassium, so I’m starting medication for that. The bloodwork shows likely anemia, so I’m working with my regular dr for more testing on that.

I know the infection had a huge headstart before medication was started, but it is extremely hard waiting to see some improvement. My breathing, when it’s bad, is especially scary. And I’m still dealing with overwhelming exhaustion, which makes everything harder.  With all that said, though, I’m hanging in here. There aren’t many options for treatment so I just need to deal with whatever comes up. I’m just so ready to feel better.

[jen-cueva]

Hi @dawnt, I’m sorry the lung infection treatments are causing many symptoms and side effects.

I knew you were working from home, but it sounds like this option is the best for you right now. Poor appetite and nausea aren’t fun. I deal with it often, too. Ginger candy and chews help me some, as does lemon ginger tea. Maybe you can try something like that.

It sounds like the increased edema causes breathing issues. I hope the increase in meds helps you have fewer scary breathing experiences. How often does a nurse come out to check on you? Would an increase in that help?

Please know I’m keeping you in my thoughts and prayers. I know this will take time to see improvements, but baby steps help. Let us know how things go with your increased meds, etc. Your low potassium may also be from the diuretic, so I hope they factor in that increase in your dosage.

Low potassium, for me, is uncomfortable when it causes continuous palpitations.

You got this, Dawn. It must feel like you are now winning, but keep moving forward, my PHriend.

[Dawn]

Hi @jenc. Sorry for such a late reply. I’m still dealing with breathing issues, and they’ve had to decrease how often I do the cefoxitin i.v. due to kidney function issues. I also found out yesterday that they’ve discontinued the amikacin i.v. because my kidneys are on the verge of failure. The dr called me to go over everything, said we’re going to give my kidneys time to recover some from everything then we may try a lower dose of the amikacin. The dr said she doesn’t want to risk kidney failure that can’t be reversed, which I agree with. She said she thinks they can still clear the infection but if we can’t use the amikacin it will take ‘significantly’ longer. Not what I wanted to hear, but as long as we can still clear up the infection and I can breathe easier (hopefully soon on that) we’ll keep hanging in here.

[jen-cueva]

Hi @dawnt, my dear PHriend, It’s disheartening that you keep hitting obstacles, especially while dealing with your lung infection. I’m sorry you have to go through this.

Kidney failure is not something to take lightly, so I agree with giving them a break and hoping for a bounce back to your baseline. I’ve had my fair share of kidney failure scares, but I, too, have been fortunate enough to recover to my baseline of stage 3-4.

Taking longer for the infection to clear, but I know you’ve got this. You’ve already shown remarkable strength in dealing with these trials, and I believe you will overcome this too.

When you feel up to it, please update us. I hope and pray that you will soon find relief from the increased SOB. Take care of yourself, and know we’re here whenever you need us.

This news can dampen the mood. But chin up – you’ve got what it takes to face this challenge head-on. We are with you, Dawn.

[Dawn]

Hi @jenc. I’m actually doing very well with everything, I think, especially based on my history with depression. I’ve decided that since this infection had a 14 month head start before treatment I can give the treatment 14 months before getting too panicked about my perceived slowness of improvement. For how much infection they found in my lungs it’s not going to improve too quickly. I know my doctor is monitoring things closely, and will do everything she can to get me through this. Once I get some relief with my breathing I think my outlook will improve, so I do hope for that to get better as soon as possible.

[jen-cueva]

Hi @dawnt, I’m grateful to know you are doing alright. It sounds like you have a mindset and a medical team that helps you get through these IV treatments and the struggles you are dealing with as your body undergoes this process.

By your response, I’m confident you’ve been keeping in check with your mental health, too. How is the new therapist going? I have better bonded with my new therapist than my previous one, whom I thought I worked well with. It isn’t easy to explain. But I’m grateful.

Extra love, hugs, and prayers that you’ll notice improvements before long. That will certainly help you along in the process. <3

[jen-cueva]

@dawnt tried sharing an update an had trouble posting. Below is her response to my comment above.

“Hi @jenc. Sorry to be so slow in my responses, I’m still dealing with exhaustion that I find myself falling asleep and suddenly wake up an hour later and realize I dozed off. I’m trying to sleep as much as I can between i.v. treatments and things that I ’have’ to take care of. I think I may take some more time off from work because I’m truly not giving them 100% right now. I make up time, or take sick time, but they’re not getting my best.

My dr let me know that they won’t be restarting the amikacin because they’d have to reduce the dosage so much that it wouldn’t be therapeutic. I spoke with her about my breathing, which I can’t honestly say is worse than before I started treatment or not. It’s just different, and I have to stop and catch my breath doing things like getting the mail, walking into a dr appt, etc. that wasn’t as bothersome before. My dr reminded me that we don’t want to assume that every symptom is from the lung infection, and should get things checked out in case there is something else going on. I made an appointment with a local pulmonologist so I have someone closer than my ph specialist in Baltimore. I’ll still keep my ph specialist, but think I need someone local too. My dr said she is also going to reach out to some doctors in Colorado who are working on treatments for this type of lung infection to see if they know of any new treatments or trials etc.

I think once I get some relief on my breathing I’ll do much better with everything. I still have no appetite and anything I try to eat has little/no taste. I’ve tried a couple different meal replacement high protein drinks, but haven’t found one so far that I can handle the taste. I’m sure that’s not good for my energy level either.

I’m glad you’re doing well with your new therapist, I am also feeling comfortable with my new one as well. I’m so glad, though, that my long time therapist doesn’t plan to fully retire until November. She’s been a great help getting through all these health issues.

Take care, Jen. Thanks for checking in on me.”

[jen-cueva]

Here’s my response to @dawnt.

Hi Dawn, so sorry you had trouble posting your response. The only reason I can think of is that maybe the system thought it was too long. I know some have had that issue. Tech suggested we break up longer responses into two. That sounds like a pain, especially when you aren’t feeling good and trying to update.

Ugh, I hate that exhaustion but know your body probably needs it all. I think taking more time off from work is a great idea. Can they extend your leave? Like a short-term disability? You’re like me; I talked the day off when I couldn’t give my best.

When do you see the local pulmo? I hope they can work with your PH team and other HCPs. Also, hopefully, your doctor will learn of something newer to treat your lung infection and also have fewer effects on your poor body.

The only protein meal replacement I could tolerate was the Boost Breeze which is more like a juice. They have several flavors, and I can’t remember which I liked best. They send you a few samples if you call them and tell them you want to try, or your insurance may cover it if your doctor writes an order. I heard some do. Your poor taste and appetite certainly don’t help you regain your strength. I can relate. Can you make smoothies? They have premises in the frozen section at the grocery stores. You can toss it in a blender, add water, juice, coconut water, and turn it on.

Also., if you like muffins, Kodiak has cake, muffins, and oatmeal with extra protein. It’s more than the usual muffin mixes, but we like the blueberry one, and I add a few extra fresh ones. It sucks when we know we need to eat; nothing tastes good.

Yes, I like my new therapist. We have a session this week. I am glad yours is going well, although your current therapist won’t retire until November. I’ll share your update; please update us when you feel up to it. I’m sending you extra love, hugs, and prayers, my sweet PHriend.

Does anyone else have any protein-rich options for Dawn? One of the companies(maybe Boost, too) also offers protein pudding. I haven’t tried those.

[Colleen]

@dawnt as challenging the routine of IV therapy can be I hope as the weeks pass you start to feel the worth of it all. I’m hopeful that you will.

I was happy to read that you agreed to take some time off. Any luck with getting a wheelchair or scooter?

[Dawn]

Hi @colleensteele. I’m very glad I took some time off, and am working strictly from home. I have the option, so may be taking more time off just to give my body time to rest.

I decided a wheelchair might not be the best option with the picc line. I’m not sure it would be an issue but thinking about moving a wheelchair with the picc line in concerned me. I also spoke with my cardiologist, and he said he’d really prefer I keep moving on my own unless it feels like I truly can’t do so. So for now I just move as slow as I need to, and rest to catch my breath as much as I need to.  Giving in to that has made a good difference.

I hope you, Colleen, and your family are doing well with healing from your loss. I know it takes as long as it takes, some good days some not so good, but time will make a difference.

[Paul]

It’s been sobering week reading the posts for Colleen, so it makes me retreat abit.  Days leading up to that post and news, well, we’re ok. Hearing the news that Colleen and family, first to make those choices then to continue are unimaginable. So, it’s raining here in Philadelphia and to me, is a nice day.

 

Thank you Jen for all you do.

BTW Brooklyn is my tag, Paul is me.

[jen-cueva]

Hi Paul, @brooklyn, I’ve also faced similar feelings, contemplating the possibility of something happening to my husband, who takes care of me.

A few years ago, he underwent emergency stent placement, and it was incredibly difficult to be on the other side once more. As expected, my daughter and I struggled emotionally while he was in surgery.

It’s often more surprising when a family member, rather than the person with PH, faces health challenges. One might assume that dealing with Cullen, who has PH and underwent a transplant, would be enough for any family. However, Colleen’s husband, Brian, has also encountered medical issues. As she shared with me on Friday, “we all believed he was finally going to receive the help he needed.”

We were all unprepared for the events that unfolded when Brian was hospitalized. This devastating loss has deeply affected us all, not only because we empathize with Colleen’s pain but also as we reflect on our own lives and loved ones

Sending additional love and hugs your way this week. We’re here for you and eager to offer support. Feel free to express your thoughts anytime, as this space is secure.

[jen-cueva]

Hi @brooklyn, I wanted to check in and inquire about your well-being this week. I’m hopeful you are spending time outdoors and doing things you can enjoy. Is there any support we can provide, my PHriend?

[ky]

@JenC, This week has been WILD, one of our daughters with type one diabetes got the flu and couldn’t eat so she turned off her pump and as she got sicker assumed it was still the flu, her body must have digested some complex carbs before she turned off her pump and her sugar went crazy. She was hospitalized Monday and she was really not coherent Monday and Tues Wednesday she was finally able to speak and Wednesday she was able to eat, however he potassium and magnesium tanked so she was held until yesterday at around 7 pm.. long week of hospital and a few very stressful nights! Now we are just catching up on everything and getting back to life. (and waiting for our second grandbaby to arrive) He is due on 14th but mamma is tiny and she is just all belly there is no more room in the inn LOL so could be soon

[jen-cueva]

Oh no, @kygon, I’m sorry to hear about the problems with your daughter. It must have been both stressful and frightening. How old is she?

Has she ever turned off her pump before? Skipping meals would undoubtedly affect her health, and situations can escalate quickly, I imagine. It’s unfortunate that she had to deal with the flu on top of everything else. Poor girl!

Her disorientation during those days must have been extremely worrisome and stirred up various emotions for you and Bryan. I’m relieved that she was eventually discharged and allowed to return home. How is she feeling this week? Has the flu subsided, or is she still fighting it?

My friend, I’m sending y’all extra love, light, and positivity for a better week. How are you and Bryan holding up this week? Feeling emotionally and physically exhausted? Please let us know how we can support you.

Hopefully, the other grandchild will allow you a week to recover before his arrival!

[ky]

@JenC, she is 20, yes it brought up all kinds of flash backs to Bryan’s stroke and Kay’s hospital stay, but she is fully recovered and no more flu, this is just one of those diabetic learning curve balls .. no matter what is going on Check your sugars anyway!

Well my daughter in law is nesting right now so that is fun! We are pretty sure she is going to go sometime in the next week or so … very excited but yes could use a little reset time and Bryan is pushing hard to catch up everywhere so he is a bit crabby and I am too, not our best combo but we always make it work lol

[jen-cueva]

Hey @kygon, Spring brought two grandbabies for you and your family! That’s exciting and extra bundles of baby smells, cuddles, and cries.

Sir Lennox is near, but I forget where the granddaughter ( and parents) live. What is her name again?

How is your daughter doing after her mishap?

I know you and Bryan are busy enjoying babies and taking time in between to work and rest. How are y’all managing overall?

Any plans this Memorial Day weekend?

[jen-cueva]

Hey @kygon, poor thing! How long has she had diabetes? I bet at 20; it is challenging for her to monitor her sugars and what she intakes throughout the day.

I’m grateful she is doing better! Too bad, most of our learning curves are the hard way! I can only imagine the thoughts you both endured through this last week.

Oh, how fun, nesting! Yep, hoping you both get a short reset so you’re not crabby when the new grandbaby arrives. Manny hates the word “crabby”; one of my good friends would tell him. She would say, “aww, are you crabby today, Manny,” hehe. So I mess with him all the time with that. That was so long ago for me, hehe.

But both of us crabby is not good. Recently we have experienced some of those days, too. But, like y’all, we get through those days, too. ( and both made it out alive, hehe)

Hugs and positive thoughts are with you and Bryan; a few extra hours of sleep will hopefully help. If not, maybe open the wine, hehe.