What is on Your Medical Calendar for February?

[vicky-olsen]

A question: I am from Canada, currently in Mexico. We just got invited to go to Disneyworld in April. Woohoo! With grandkids and all!! We need travel insurance, but not starting from Canada. I filled out a form online, then when just about ready to pay, it asked if we were flying from our home province – then denied.
Has anyone had this problem? Insurance company recommendations? Thank you.
PS Health is ok. Have had a slight cough off and on since December, not bothersome and remain covid neg.

[jen-cueva]

Hi @vicky1437, what, you’re quite the adventurer, huh?

It sounds like you are enjoying life daily. The trip to Disney with the grandkids sounds wonderful, minus that wrench. My apologies; I’ve not traveled out of the US since I was diagnosed. But that sounds like a petty problem, and I am hopeful that others can offer suggestions or that you’ll find a solution soon.

I found this online; I don’t know if you’ve tried a company like this.

Global Travel

I’m thankful to hear your health is good, minus that cough. Keep safe and enjoy each moment. Please keep us posted, my PHriend.

[jen-cueva]

Hi @colleensteele, I turned the page on my desk calendar, which is blank, so I only know of my next infusion “cocktail” on Sunday, labs to follow, and labs again the following week.

I feel like I’m missing something vital, so I need to check my patient portals to be sure I haven’t. Maybe it’s a quieter month after the last month or so.

Some months are so busy this can be draining at times. What an incredible idea to share some about our upcoming medical appointments! Let’s help raise rare disease awareness for Rare Disease Day.

[carol-volckmann]

Hi Vickie, I have several relatives in Canada, two of them with chronic diseases and are unable to be covered outside Canada. I hope Jen’s link to Global Ins will be an answer for you. You might also check in to trip insurance. Good luck!

My February is already a mixed bag – labs pretty good but other stuff has shown up that has complicated my PAH. So… trying to make appointments to get some answers and get my breathing back to where I am able to do what I am use to doing. Most of my appointments are end of Feb and into March so we shall see.

 

[jen-cueva]

Hi @cdvol3gmail-com, somehow I missed this update- my apologies. I’m concerned that you mentioned your breathing is not where it has been, and some things have complicated your PAH. Is this related to your scleroderma by chance?

Please know we support you as you await these appointments and get some answers. We need you back on track, and so does Cloud, hehe.

Waiting to know is the worst; I’m sorry you must wait to get some answers.

Positive thoughts, hugs, and prayers are with you, my PHriend.

[carol-volckmann]

Thank you dear friend! My breathing has gotten worse because I have not because I have not been able to exercise.

I will be seeing an Orthopedic surgeon on the 21st and start PT mid March. I did get a knee brace and was able to give Cloud his 1st walk in the morning – so, we are coming along….

Thank you again forcyour thoughtfulness and kind words.

 

[jen-cueva]

I’m sorry sweet PHriend, that your breathing has worsened. Thankfully, you see the Ortho on the 21st and hopefully can start PT next month. However, post-recovery is a struggle, I’m sure.

Wow, taking Cloud on his walk is a huge accomplishment! WTG! I know Dick is grateful since he has been doing the walks. I bet Mr. Cloud is a pretty active fellow.

Thanks for sharing your steps forward as you recover post-surgery. Have a beautiful weekend, and don’t overdo it!

[jen-cueva]

Hi @cdvol3gmail-com, what appointments are planned for this month? Did you have any this week as we closed out the month?

I hope you, Dick, and Cloud are staying warm and dry—another wet and cooler day here in SD. Stay cuddled up.

[carol-volckmann]

Good evening sweet friend. It has been a busy February  – Cardiologist, Pulmonologist, Orthopedic surgeon, and my primary doc. Cardiologist and Pulmonologist went well – stable. Orthodontist- not much I can do about my knee except PT and cortisone injections. In his words, with everything going on in my body, don’t sweat the small stuff.

March I will see my Rheumatologist and adding to my “ologist” I will see a Gastroenterologist. Nothing has worked for my SIBO and bloating. Seems like my Scleroderma is just creating more internal issues. I thought my worse fear was PAH. Nope, it’s Scleroderma.

Dick is great, Cloud still a handful and loving but not all at the same time – he is a puppy! One very big answer strong puppy 🐶.  He does get better every day.

How is little Ms Zoe doing – a sweet handful? Give her a tummy rub from me.

Thank you for asking and checking up on me. I hope March will be very kind to you. Do you have a full plate or can you relax a bit this month?

Sending positive vibes, energy and warm hugs from all 3 of us.

[jen-cueva]

Hi @miss-whitneyj, I think you mentioned you were scheduled for a heart cath today. I hope that all goes well and you get some answers. I’m thinking of you and sending you positive thoughts and prayers.

How did it go? Did they go in your groin, neck, or wrist? Was it not as bad as you expected? Did you talk to your PH team afterward to get your results, or do you have to wait?

[terry]

I had nothing for February . Just having a relaxing time managing my PAH , then the bloody wheels fell off. It all started when the boss said there was a stink around back . Sure enough a snake had decided to cark it in the boulder wall out back . Couldn’t get it out so left it to rot. Did you know a dead snake can still inject venom.  A week later woke up with blood on the pillow. It was coming from my good eye fgs so I went to the optometrist who prescribed new glasses $1450 and told me to see the doc.as the blood was from below the eye not in it. Did a blood test before seeing him (fbc,crp ) .He checked around eye but could not find where blood was coming from . Then checked blood results . Calcium low so having bone density test tomorrow. I was on alendronate when on prednisone as it was eating away bone . Did a blood pressure and pulse . My heart beat is all over the place . Two bests gap,three beats gap, eight beats gap. Now I’m checking my pulse 10 times a day , still blood on pillow and odds I’ll be back on alendronate.  Might give the cardiologist a call for a chat. Don’t ya love it ,better than being bored.

[jen-cueva]

Oh my, @terry, I’m sorry your calm month turned out chaotic. I do suggest you let your cardiologist know what you’re experiencing. Wow, I hope they can find out what’s going on.

As they say, there is never a dull moment, right? I always say my pains and annoying symptoms want to remind me that they are still with me.

Bone density tests will offer some more information on low calcium. But those meds can undoubtedly affect our bones. You know, the evil necessary stuff. They help one thing and contribute to other issues. SMH.

Take care of yourself, and please keep us posted, Mate.

[jen-cueva]

@terry shared an update but as an update instead of replying here. I’m sharing his update here so others can easily find it and offer him some thoughts.

He says, “Lucky enough ti get appt. with cardiologist .
ECG showed regular heart rhythm but manually checking pulse does not pick up Low pulse due to lack of blood on a beat. So not a problem.
Had a bone density test. Dont know results but boy the new MACHINERY makes it easy to do.
You know the old dads trick on kids.
Dad will spell the following for the kids to pronounce.
M a c. D o u g a l
M a c. D o n a l d
M a c. H i n e r y
Might go out and partly now alls good with the ticker”

[jen-cueva]

Hi @terry, Mate, I copied your update here so others could locate it easier. I’m grateful you could get in to see your cardiologist. It sounds like you checked out there; thank goodness, that’s a relief!

Thanks for sharing your experience with the new machines for bone density scans. I am supposed to have that done within the following year. It’s been on hold, and I know my nephrologist will keep after me and my insurance so that they will cover it.

Take care, and better check with the boss lady before you head out partying.

How are the cracked ribs? Breathing any better as they heal?

[jen-cueva]

Hi @carol-alexander, you’re on my mind, and I wanted to check in with you. How are you doing, my PHriend?

Are you still doing the Tyvaso DPI powder? Have you noticed any improvements? Did you see your medical team this month?

When you feel up to it, let us know what’s new and how we can best support you.

[erik]

I went to the dentist and he referred me to a oral surgeon who want to remove four teeth and put two posts in all under anesthesia totaly knock me out. I voiced my opinion about that he said it was safe to do in his clinic. I didn’t think he understood what PAH was

So thats my delema

[Colleen]

@erikborn PLEASE don’t schedule the procedure with the oral surgeon until you have spoken to your PH specialist. My son needed teeth removed for braces and his specialist insisted they be removed in the hospital and at the one in which he practiced do he would be available if concerns developed.

Anesthesia is no joke for PHers. It needs to be administered (if at all) by someone knowledgeable about PH.

I hate to agree, but I have the feeling your dentist has no clue what PH is.

Please keep us updated. I’m sure you are anxious to have your teeth taken care of and I hope you find a way for that to happen soon but safely.

[carol-volckmann]

Hi Erik, that is a delema. I think if I was in your situation I would get ahold of my PAH team and ask them if they would be okay with you under anesthesia being totally knocked out.

I hope you are able to have this procedure done safely  – good luck and stay safe.

[erik]

Thanks for your information.  I canceled the appointment.

[Colleen]

@erikborn I think it was a wise decision, at least until you have spoken with your doctor about it. If not at the hospital he/she might have a specific surgeon they would prefer to send you to. I’m sorry for how much PH complicates everything.

[terry]

G’Day Jen, Colleen,

Ribs are good ,unless I start prodding looking for soreness. Ha. Bone density results show all is  pretty normal (good) and in fact improved density in spine etc. since last test which was in 2018  after 12 months on mega prednisone . (thanks Boss) One hip has mild indication of osteoarthritis. So I can jump around the sail boat without fear of breaking something hey. FYI density test involves .

lie down with toes touching heels apart. Scanner goes up and down once. Soft square bizzo put behind knees . Scanner goes up and down once.

Thats it.

[terry]

I meant to add to my bone density test description that the hardest part is putting that bloody gown on. You know they say strip to your undies and put one of those on. Yea right. First one I tried is for someone height challenged. Next way too big but stuff it that will do. Next which way gap in front or behind. Tried behind but the collar was strangling me so decided front. Still trying to find the cloth straps to tie up and to the technician opens the curtain with a ‘ready to go’ Yep whilst holding it together and wacking in a knot.  Worst I had tied the knot so tight in my hurry it took me five minutes to undo it. Even tried to lift the gown over my head . Lucky I didn’t fall out of the cubicle in my undies, not a nice look.