Checking in: How Are You?

[mendo-bruce]

I’m still alive.

Weight is down to 80 lbs but loss seems to have plateaued there for the past few months.

I’m resisting Hospice for now, my Palliative Care team can do most of what Hospice does without the restrictions of Hospice. I did go through all the “Death with Dignity” procedures and have the associated drugs prescribed now, but I’m not ready to have them sent to me quite yet.

[Colleen]

@mendo-bruce thank you for updating us. My son reached a point due to heart failure and his PH worsening, when gaining weight was an extreme, to be honest, impossible challenge. To help at least keep him from losing more weight a nurse recommended high calorie goodies like Snickers Bars, Nutella, Eggnog, ice cream and shakes with added vitamins and protein. I don’t know if any of those things sound good to you but if they do, give them a try.

Also, instead of eating 1 or 2 big meals a day, he grazed all day long. That was easier for him because his body just couldn’t handle a full meal.

I am so very sorry that things like hospice, palliative care and death with dignity are things you have to consider and plan for. Please, come to the forums any time you need support, understanding or a laugh. Everyone here has a great sense of humor when you are in need of it.

[roger-bliss]

The folks on the forum are here for you—never hesitate if you need to reach out to us. You have my support

[jen-cueva]

Hi @mendo-bruce, thanks for updating us. I am sorry that you have reached a time where you see progression with PH.

As Colleen mentions, it is often a commonality among us with heart failure and breathing issues. I, too, tend to graze like a toddler. I find crackers, fruit, nuts, and fresh veggies helpful. I also use smoothies and shakes with added protein to help with my nutritional needs when this is a problem.

Colleen mentions eggnog. I have made eggnog shakes. It’s that time of year, and I have seen egg nig in the stores. I was tempted to buy some, but I am holding off.

The smoothies and shakes work well when you grow too SOB
and exhausted with chewing.

Again, I hate that you’ve come to the point of talking about switching from palliative care to hospice care. This must be difficult for you. Please know that we are here to support you, my PHriend.

I am sending you extra gentle hugs and prayers from SoCal.

[dawnt]

Hi, @jenc. Just checking in. I’ve been reading, congratulations on your move from Texas! Always a bonus, I’m sure, to be closer to your kids. @mendo-bruce, so sorry to hear what you’re dealing with. My mother was in hospice when she passed away, and I can’t speak highly enough of the people there – both the hospice personnel, and other patients. The hospice was in an older home that had been repurposed for use as a hospice. Although her time there was much shorter than we had hoped for, she was teaching one of the volunteers how to cook during her time there and another resident who went for a short walk each day brought her a flower back from his walk each day. I hope that when/if you decide it’s time for hospice that you have the same type of caring people there for you.

Jen, I appreciate you checking on me. I’ve been struggling for quite awhile now with accepting the changes I see in what I can do compared to before ph, and how I feel physically compared to before ph. I know I have no choice but to accept what is happening, but I hoped with the great results I got on my last right side cath (lung pressures dropped 6 points) that I would feel better. I’m realizing that those results are good news as far as the medication slowing the progression of the ph, but it does nothing to correct the damage that has already been done.  I’ve always tended to withdraw when I’m struggling, and this has been no different.  I am in constant pain due to arthritis, with my knees affected most. I tried injections, but they didn’t work and I feel like they made things worse.  I’m not dealing well with the constant pain, and I’m not proud of how I’ve been struggling for what feels like quite a long time now.

I still talk with my therapist, but knowing that she is going to be retiring likely next year has me feeling somewhat lost.  I’ve got so much history with her, and the thought of working with someone else seems almost unimaginable to me.

So, rather than put out so much negative stuff here I’ve not been posting. I’m still reading, and sending good wishes for everyone, but please excuse all my grumbling and complaining.

[jen-cueva]

Hi @dawnt, I am so happy to see your update. I also enjoyed reading how your mom taught the women how to cook at the hospice house before she passed. What a legacy she must have left with them all.

Damn, I am sorry that you are having such a difficult time accepting the things that you may not do now compared to before PH. As we have discussed before, this is a grief process as we lose the person we once were and accept our “new normals.” It can take some longer than others. I, too, have had times where I think that I accepted something, then it pops up another day, and I start the process all over again.

Chronic pain on top of the mental and emotional changes can undoubtedly impact our outlook. I hate that the injections made your pain worse, with no relief. Are you on any type of pain meds, creams, topicals, etc.?

With your depression and all of this, I do worry about you. But I do respect that you tend to withdraw when you’re feeling worse. I know that you are not alone. PLesae know that we care and love you, and you can share anything with us here. You are not grumbling; you have a lot on your plate. I am sending you extra big hugs and love from sunny SD.

[debbie-moore]

I’m new to PH and to the forum.  And it is so nice to hear someone “grumble and complain”.  If I say one negative thought my family goes is a tizzy, but the truth of the matter is it has to come out so I can hear it and then deal with it.  I, too, am grieving all the things I can’t do anymore, the pains I’ve never had and the side effects of the medicines.  To be honest, I was looking forward to retiring in a few years and now it scares me.  So I guess what I’m saying is thanks for your post.  I know I’m not alone in my feelings.

[jen-cueva]

Excellent point, @debbie. Although I try and stay positive, some days suck! We have the right to complain when we are struggling. I can relate to hearing your family’s reactions. Not my hubby and kiddos, but other family members do the same to me.

If I am moody or in a bad mood, not even grumbling yet, I hear, “you’re in a bad mood.” Yes, I am, and I am entitled to be in a bad mood at times. We aren’t immune because we have PH. Heck, we should get a pass, right?

I hope that you tell me, not like me. I held it in for years, and then after hearing that nonstop, I now respond to them, LOL

[alma-prince]

Hello Everyone,
I have been in and out of hospital with my kidneys. Need to have surgery to remove kidney stones. Cardiologist says my heart could not take it right now.
I am with my daughter now and doing better. Taking one day at a time. Praying for each of us Gid will give us strength to endure and to ease our pain. Thank you to everyone for caring. Sometimes people don’t understand what you are going through.

[Colleen]

Oh no @aprince49! It is from personal experience that I am so sorry to hear that you are struggling with kidney stones. My doctor has told me that they can sometimes lead to serious concerns when they aren’t removed so I hope they are keeping a close eye on you. IF you develop a fever get seen right away.

Is there any chance of you passing them on your own or will they definitely require surgery? Do you think your cardiologist will give clearance to proceed at some point?

[alma-prince]

If I get stronger they can be removed.  Glad to be out of hospital.

[jen-cueva]

Hi @aprince49, I am sorry to hear of your kidney stones. I have not had them, but my husband has, and he said it was like childbirth. I am uncertain why he compared it to birth but have heard other males share the same comparison.

I am happy that you are home now. But hopefully, you will be strong enough for the procedure to remove your stones shortly. In the meantime, monitor your symptoms. As @colleensteele points out, it can possibly cause more complications if left untreated for long.

Keeping you in my thoughts and prayers. Please do keep us posted.

[alma-prince]

Thank you everyone.  Drs. are monitoring me.  Keeping hydrated.  If at anytime I feel worse will call and probably have to go back to hospital. So far so good.

[Colleen]

@aprince49 thank you for the update. How are you managing the kidney stone pain? I have been thinking of you.

[alma-prince]

So far I am having less pain.  Medication does help.  Trying to keep myself hydrated.

[jen-cueva]

That’s good news, @aprince49. I hope that the medication can help get you through until you can have the surgery for your kidney stones. Thanks for the update. Please let us know how we can best support you.

[randolph-reynolds]

Greetings all as we approach Thanksgiving.  There are so many people who are suffering from PAH but we only know about their issues through these forums.  I have a Palliative Care Counselor that visits and that allows me to unload all my complaints. The most dominant are the restrictions to social  gathering.  This Thanksgiving our daughter and her husband are visiting which keeps the house feeling more like a home but I cannot escape the routines that demand my attention.

It is hard to accept even after seven years.  When there are other physical ailments that hit us we feel crushed.  The hard thing is to stay positive but every little good thing that happens helps.  Praying through each day is a necessity.

At least we aren’t alone.  Blessings to all

[jen-cueva]

Hi @ripple76, I am so happy to hear that your daughter and her husband will be there to celebrate with you and your wife, this Thanksgiving. Those are the things that help us push a bit more.

I love your thoughtful message about knowing only what we do from others here in the forums. You are such an active member here, and we hope that we can continue to support you and the other members daily.

Take one step at a time and enjoy the little things that make you grateful this Thanksgiving. You are certainly one we are all thankful for.

Take care, buddy.

[Colleen]

@ripple76 I am so happy for you that your daughter and son-in-law will be with you this Thanksgiving. In between the routines I am sure their presence will be a happy distraction. Enjoy your family and feel happy because you deserve it.