How’s your March shaping up on the medical front?

[Debbie Moore]

Tomorrow I go for your basic breathing test. I’ve applied for disability and this is what they want me to do. Don’t’ know why they can’t look at my records which they have. Next Tuesday (19th) I have a bubble echo and then a RHC. The new pulmonologist wants to confirm my PH and she’s looking to see if I have a shunt. For this procedure you have to have someone with you for 24 hours. My husband and I separated last week, so what’s a girl to do? He’s still going to take me I’m pretty sure. I’m going to have to handle this PH journey alone for a while.

[jen-cueva]

Hi, @Debbie Moore. How were your breathing tests? Were they the pulmonary function tests(PFCs)? I am not a fan, as they yell at me to blow harder when I am already blowing as hard as possible. Hehe.

Wow, that’s a huge step, applying for disability. How are you feeling mentally and emotionally with this? I know this can be a pain, but it is needed if they are requesting that info. So, is this with their doctors? They asked me to see their doctor; he took one look and was mad they even had me come in. But I had so many records sent to them, too.

OMG, sweet girl! I am sorry about your separation. How are you feeling about this? Was it something you thought would happen or out of nowhere? Please know you don’t have to share, especially since this is new! But we are here and ready to support you with this. You’re never alone! Message me privately if you want to be more private than the forums. I am, we are, all here ready with open arms to help you when you are ready.

This is a crazy month full of events, my sweet PHriend. I’ll keep you in my thoughts and prayers. You know, I hear this at times since I’ve had PH 19 years, and I always wonder what I would do if this happened to me. I have no clue. But somehow, just as you will, all get through it! God has you in his arms; I know your faith is strong, so I hope that offers you some comfort. 🤗🙏

[jen-cueva]

Hi @Debbie Moore, how are you feeling this week? You’ve had a lot going on at once, and I’m certain your physical and mental health are all over the place.

I’m thinking of you today as you undergo the bubble Echo and RHC. Please let us know how things go when you feel up to sharing. 🤗

[Debbie Moore]

I applied for disability two years ago. It is a long process of waiting! The breathing test was the first breathing test you get with the blow out longer than you have breath!

I had my RHC and bubble echo done. They showed the doctor I need different tests. The RHC showed mild PH, so she’s not going to treat that yet. She’s trying to find out why my oxygen need is so high. Next is a CT scan on the abdomen and a VR scan zooming out to see the flow of blood to the lungs and to the brain. She believes there is a shunt to find. I’m hoping one of these tests tells her what she needs to know because if no results then a lung biopsy will have to be done. I really don’t want to do that.

My husband and I are working things out. My emotions have been on a rollercoaster ride. He did take me to the hospital for the testing. Only time will tell.

[jen-cueva]

Hi, @Debbie Moore; wow, I didn’t realize it has been two years since you applied for disability. Mine didn’t take that long, probably about six months.

But, it sounds like they are continuing to order tests until they figure oput why you need so much oxygen. I hope and pray the next few tests will show something, so you won’t have to undergo a biopsy.

It’s great that you and your hubby are trying to work things out. I can’t begin to imagine the rollaercoaster of emotions you’re experiencing. But so grateful he did go with you to have these tests done. I’ll continue to pray that you both can wpork things out and it will be positive for you both. 🙏

Please know we are here and ready to support you, my PHriend. 🤗

[DeLois Tweedy]

I lucked out and have only 6 month echo and cardiologist follow up end of the month. I am both glad and anxious. My echo last time showed better PH pressures and mitral valve pressure. However, it also showed the mitral valve area to be smaller than the previous 6 month echo. I suppose I’m anxious to learn the numbers, because it can be an indicator of HR and PH progression.

[jen-cueva]

Hi @DeLois Tweedy, you have a busy day at the end of the month. Is that all on the same day? I know some PH doctors do it the same day before the visit.

What have you been up to this month with all of this “free” time? Hopefully your grandkids are keeping you busy so you don’t think about this all month. But anxiety for these tests certainly is something I know I can and many others will relate to. Let us know what day and we will send you extra positive thoughts and prayers. 🤗

[jen-cueva]

Hey, y’all, how’s everyone feeling this month? Do you have any appointments, procedures, or events we can support you with? I know it’s been a bit quieter than usual around the forums. Hopefully, this means you’re feeling good and beginning to get outdoors and enjoy the warmer temperatures in your areas.

😎

[Randolph Reynolds]

San Diego drying out.? Prescott is mild but no flowers yet. My medical activities for this month are light, that is few. Blood tests chasing INR. The mental challenge for this month is one that I dread. We are going to committ to moving into a retirement village, well apartment. If there is any logic to this it is based on my wife’s aging and her desire to back off on most of the housework she is doing. Also I am of very little help in this matter. It isn’t that I’m anti-social it is that I am alway attached to some air delivery system and that impeeds spending time in many of the ‘residential’ pastimes.

This time was bound to come. Such a move to downsize was horrific the first time eight years ago but this one – jeez. Definitely no room in the inn for all my stuff. Where do you put an exercycle?

Physically I am managing quite well. Emotionally – not so much.

Question: how can someone have an infusion site in their arm?

[jen-cueva]

Hi, @Randolph Reynolds. I hate to say yes to your question about whether San Diego is drying out. It’s supposed to be sunny with highs in the low 70s this week. But yesterday, I woke to rain. Thankfully, it wasn’t all day. It was sunny this morning, but now it’s becoming cloudy, so I’m crossing my fingers and toes so the sun will reappear.

As you think about moving into a retirement village, I know that must be emotionally and mentally draining. Is it more like individual small apartments? Or is it the ones with a large fancy dining area and rooms for exercise and other events? Manny and I downsized and moved into a two-bedroom condo with a small patio and garages. We came from a four-bedroom home with a pool, large deck, patios, and garages.

It was scary, and I was emotional at first , although we did the move pretty quickly within the month. Once we arrived, I was freaking out, thinking that even after we got rid of so much, we would still be busting out the walls here. But almost 3 years later, I’ve enjoyed having less space and fewer items, and it’s working. The thing I miss most is more kitchen space. Manny misses his extra garage and outdoor space. I wish we had a tad more privacy, and I know Manny, a veteran, wishes the same. But we are doing pretty well with it.

Every change is challenging, and knowing your past, you learn to adapt to whatever is thrown your way. But it also makes sense that it reminds you of your lifetime in the military and those residential settings. Please keep us posted on the progress of the move and how you are managing mentally and physically. I am keeping you and your sweet wife in my thoughts and prayers. Thanks for updating us, Randy.

[DeLois Tweedy]

Hi @jen-cueva. My echo and cardiologist appt is March 29 (Good Friday). And yes, they schedule all for the same day, as I live abt 2 hrs away. My pulmonologist appt is couple of months later. I may have bragged too soon abt lucking out for March appts. I spent a few hours in the ER Tues 3/12. I had been retaining fluid which I could not get rid of. Tues morning my BP went sky high. At the ER I was given another metoprolol pill and lasix through IV. BP came down slowly (as I lost fluid volume). This adds a follow-up appt for next week.

[jen-cueva]

Oh no, @DeLois Tweedy. I hate to hear about your increased fluid and ER visit. But I’m grateful they could get you more IV diuretics and hopefully potassium to get the extra fluid off and your BP down. It is difficult when these issues pop up when we least expect them.

I hope the cardiologist can adjust some meds so you won’t have any more issues retaining that extra fluid. I always have an extra prn (as needed) diuretic on hand and ordered for days like that. Of course, I also need to take extra potassium with it, too.

Keep us posted, and I hope and pray that you can make it through the month for your appointment and echo without any more “hiccups.” Take care, my PHriend. Take it easy this weekend. 🤗

[jen-cueva]

We haven’t heard from many this month, so I wanted to check on you all. I will tag a few but know you don’t have to share unless you want to. Also, if I didn’t tag you, we still want to know how you are doing.

How are things going this month for you, @Carol alexander , @Carol Volckmann , @Aunt Lizzie , @Jim Sparrow , @Nancy McSweeney , @Sally Hoffman , @Dawn , and @Tracey ? It’s been awhile and we all would love to hear what’s new and if you have anything we can help support you through.🤗

[Randolph Reynolds]

Jen

I hadn’t replied to your questions for a week because we were in the middle of dealing with paperwork and the start of ‘throwing’ stuff away. (Some of it was left over from our first downsizing.)

The name of the Place is Touchmark at the Ranch. It looks like a hotel surronded by small homes. There are many of them out west. We are moving into an apartment that is half the size of our current house.

I have been told that there are other occupants (inmates) that use oxygen but I haven’t seen them about. The housing market here is a seller’s market so we should do all right on that end. Touchmark is a bit expensive but at this stage we can afford it. Being on O2 around the clock will definitely limit me. There are two dining rooms and a nearby restaurant that belongs to the facility and open to the public.

For both of us this move is very stressful. Physically demanding and I find myself breathing heavily as I work. There are so many unknowns imbeded into this move but we have a couple of people who are experienced in moving older folks. Two weeks from today we’ll be moving.

The place is so huge that I really get my walking workout just going from the apartment to the entry.

BTW: What is the latest on Colleen?

[jen-cueva]

Hi, @Randolph Reynolds. Oh, I know how much that can be physically and mentally as you try to pack up your belongings. Downsizing is challenging because who knows what you may want when moving in?

Do you have any family or friends who can help? When we relocated, I was grateful our daughter could help us unpack and get things where they needed to go.

I’m sorry that it’s time and you and your wife had to make this decision. It does sound like a lovely place. Plus, you’ll also have neighbors close by to count on. Maybe you’ll find more Veterans you can join and talk about your days back in the service.

It sounds like this is all moving along quickly. Please take short rest periods, as I know how taxing this can be. I wish you and your wife the best in this new season of your lives.

@Colleen has had her p[late overloaded. Unfortunately, she has been in WA again for weeks trying to have some repairs done on her house there after a water leak. She was planning to head back to NJ on Sunday. But I knew when she arrived, she would stay busy trying to catch up on things with Cullen and her parents. She hopes to be back in the forums within the next few weeks. She misses you all here and appreciates the love and support. I hope and pray things start to settle down with her soon.