Wondering If Something Is a Side Effect of a Medication or Disease Progression

[Kathleen Sheffer]

I struggle with this SO MUCH. Often our doctors rely on us to report on whether a drug helps us or not. When I tried new PH therapies I would try to insist that my doctor order a baseline MRI or catheterization (ugh) before starting the new therapy so that we could compare later tests to that one and not rely so heavily on my symptoms. One therapy I tried made my nose stuffy all the time and I decided it was worsening my symptoms and not allowing supplemental oxygen to flow into my nose. But it was seriously hard to say if it was that medication or just more disease progression that was making me feel worse.

Right after my transplant I traded about 20 PH-related medications for 20 different transplant-related medications. It was a mess! I had so much trouble deciphering which symptoms were side effects of medications and which were high blood pressure for example, or side effects of different medications. This is when I completely stopped drinking any amount of alcohol! There was so much to keep track of! Gradually it got easier and I had my doctors take me off some of the medications I determined were doing harm (those psych drugs can be nasty).

I think the best thing we can do is take good notes. If you notice a symptom, write it down in a journal that you bring to appointments. Once it’s in there, you don’t have to think about it so much. The next time it happens, track it again.

Currently I’m having heart palpitations occasionally, which freaks me out. I know normal hearts can behave this way, but obviously it is giving me anxiety anyway (which probably creates more palpitations!). Instead of letting that anxiety take over, I simply mark in my calendar every time I have an event. When I see my cardiologist in October I’ll be able to discuss it with her and determine whether an event monitor makes sense. If it’s happening often enough, we can do that. If not, I’ll keep recording myself.

This is how I find small ways to take some control over my symptoms and then let them out of my mind so I can live in the present.

Do you take notes about your symptoms? My mom was always good at doing this when I was a kid so I try to emulate her system. What systems work best for you?

[Brittany Foster]

Hey Kathleen,
I don’t take 20 different PH meds but I do take meds for other things too like GI stuff and meds that can even make me feel more dizzy some days. With co existing conditions this also gets tough wondering is this doing more harm to other areas of my body etc.

I also keep track of worsening symptoms and will put the dates of when i started a medication, dosage I’m taking too because sometimes all it takes is a tweaking of the dose to get it just right.

I use a journal too that I take with me to appointments and then the night before the appointment I’ll try to make everything fit on one page and add my questions. Sometimes i do it for about a week and if there isn’t changes in how I’m feeling I rely on calling my doctor just to check in with them. I used to just wait for the appointment, now I give it a week or even a few days depending on the symptoms and how much they effect me.

[jen-cueva]

Great points Ladies!
After 13 plus years , you would think I would know the difference, but it’s so tough when the side effects mimic progression of the PH. I also have low sodium , those symptoms as well are similar to side effects and symptoms of PH. The first time I had a really bad epyand ended up in ICU with low sodium, I had just increased my PH meds so the muscle aches and pains were that .

I really do need to start a journal of symptoms and notes for my docs as I always forget once I’m there. Even with my hubby there , we forget. I haven’t kept a journal for my PH since the first few years I had it.

I always call or email my doctors if I have any questions. I’m sure they may get annoyed at times, but I rather be safe than sorry. We have to be proactive and our own advocate.

[Brittany Foster]

So true Jen,
being my own advocate is a way that I feel some type of control through all of this. As you said, it is always better to be safe and cautious. I’m sure doctors would rather their patients report symptoms vs not saying anything and waiting for things to get worse. I did this for a few years of my life out of fear of what was going on with my body and I think I only made matters worse. Now I have learned the importance of speaking up when something feels “off”. Journaling and keeping track of my symptoms as they occur also helps alleviate some of the anxiety that goes along with holding onto all of this ! Whether it’s emotional symptoms or physical symptoms (or even a combo of both!)

[jen-cueva]

Hey Brittany,
Yes, I know, like yourself I did that several years and my body did not like me. Some days it still don’t, lol
But, through the years I’ve gotten better at contacting my docs or nurse about anything I think is off. They say I’m new bother, I some weeks feel like I’m their only patient, as I call and take so much of their time. They say, no problem and they do prefer us to call.

We know our bodies the best , and they know that, too.
I definitely need to start journaling myself again, as you say emotional and physical symptoms. Some days it’s all of the above, lol

[Brittany Foster]

Some days it surely is all of the above (and then some). It’s not only our bodies that we have to take care of, it’s balancing relationships with friends, our significant others, family members, etc. It’s HARD WORK!! Writing it out helps me channel a lot of that and gives me an outlet for my feelings when I don’t feel like putting it on everyone else.

[jen-cueva]

So true, Brittany!,
It’s Very hard work, indeed!

Yes, writing and just being able to talk to others like ourselves, definitely does help. I used to be so much more active in the PH community online, etc. I’m trying to get back in it a little more. Definitely saves us from going bonkers on our loved ones, lol

[Brittany Foster]

Jen,
I know the feeling ! I feel like our significant others could benefit from a vent sesh with each other too ! I know sometimes when it is hard, I wrongfully take it out on my boyfriend. He is as patient as possible but I know that there are times when it is difficult, especially when they are going through something too in their lives. It’s good to have the support of each other for SURE!!! Glad you are back and more active now online.

[jen-cueva]

Hi Brittany,
Sorry I’m late at getting back on here.
Yes, our significant others definitely deserve a medal , lol
Vent sessions as well…my hubby is awesome and I have to make him get out and do some things without me as he’s always feeling bad. But, I know and tell him, he needs his time as well and he has to get out and get his workouts and hobbies in , that way he’s in the best health possible. It sounds like your boyfriend is the same.

Have a great week.

[Brittany Foster]

Hi Jen,
glad to have you back. Thank you for your comments! My boyfriend and I are very similar to what you’re describing. I like when we both have our alone time with friends. It allows him to get out and enjoy things that I may not be able to do. Sometimes it bothers me when I can’t stay out as late with him, but then I realize that my beauty sleep is more important lol! Hope your week is going well so far.

[Valerie]

Hello All
My name is Valerie. I am new to this. So hope not to sound to silly here. I am recently diagnosed with mild pulmonary hypertension. I live at an altitude of 10,254 feet in Leadville Co.
I have lived here all of my 52 years and always thought I could handle my lovely mountains. Initially I ignored the doctors advice regarding wearing my oxygen due to hypoxia and dyspnea. I guess I just thought that it’s “just the altitude” I will be ok. Well now I have PH. And I have to wear oxygen all the time now.
So I’m wondering if it’s normal for me to have a heavy chest with wearing oxygen all the time in the begining?

[Brittany Foster]

Hi Valerie,
I am also an oxygen wearer and it took me a long time to accept that I had to wear it. I never wore it exactly as I was supposed to and still have days where I struggle to wear it. I have realized that the more I have it on my face, the less I actually remember that it’s there and it just sort of becomes a part of me. People will look and wonder why I have it, but even the stares seem to go unnoticed by me (unless I am with my overprotective sisters who will shout things out to people like ” HAVE YOU NEVER SEEN OXYGEN BEFORE!) Truthfully, most people probably haven’t seen it on a 27 year old otherwise healthy looking woman. So unless they work in a hospital setting it may come as a bit of a shock to them. I would highly suggest that you wear it as much as possible and start to shift your thinking to all the ways that it is helping your body and your energy levels. When I actually have it on and I am doing what I am supposed to do, I feel a difference in energy, less headaches, less dizzy spells, and I feel over all better during the day. Start writing down the ways it is helping you and then you can look back at something for the days when you think “I don’t want to wear this” and you WILL have those days too. That’s only normal. There is a seperate forum with topics for oxygen users if you want to check out some of those topics too that might be helpful or ask a question there! Most people are very responsive ! If you click on the Forums tab at the top, scroll down to the heading “oxygen users” and when you click on that a bunch of topics and question that have already posted will be there and you can reply to them !

[Kathleen Sheffer]

Valerie, (@valerie)
I encourage you to talk to your doctor about other treatments for your PH. When I was diagnosed in 2000, doctors were not so hesitant to prescribe the most aggressive treatment for PH. It has changed and now most patients are started on oral therapies before their PH gets worse. But this is a progressive disease, and it does get worse, and many patients end up needing to go on more aggressive therapies – mainly, the intravenous and subcutaneous medications.

I don’t understand why these options aren’t considered earlier. I went on IV Flolan immediately after diagnosis and experienced dramatic improvement. I was not on oxygen full time until the last month before my transplant after my disease rapidly progressed to that point. My quality of life was much better requiring only oxygen at night. Please see if other treatments are an option – oxygen is primarily for maintenance and does not have the ability to significantly lower your pressures like some of the medications do.

Brittany has PH secondary to her CHD so the therapies I’m talking about don’t apply, and that may be the case for you as well. We have to be our own advocates and make sure we are choosing from all the options.

I will add that my doctor advised I stay below 4,000 ft and I experienced altitude sickness whenever I went above it (3 times in the 20 years I had PH). Relocating is a challenge of its own, but I’m confident your symptoms would improve, should you decide to do so.

[Valerie]

Good morning Brittany
Thank you for your reply.
It helped me greatly. Sometimes you feel alone going through something like this, you have inspired me to wear my oxygen and think of my health properly.
It means alot to me. It is definitely a struggle to get used to wearing it all the time.

[Brittany Foster]

I know the struggle personally and it has always been hard for me to wear it. It just becomes part of your life after awhile and you truly just get used to it on your face! The more you wear it, I know the better you will be and feel! If you need any support through it, you have a whole community of supporters here and you can message me any time 🙂 Keep pushing forward !

[jen-cueva]

Hi Valerie,
Definitely no silly questions here…I have lived with PH since 2005, I’m 40ish lol , I still continue to have days when I’m like , “ no, I’m not doing that or this” referring to wearing my oxygen as ordered as well as resting when I know that my body is in need of rest, not doing. It’s a very hard balance and daily struggle, for sure. My hubby often “ grounds” me to the couch lol

Like Brittany, I, too, find and know that when I do wear my oxygen, rest when I should , not when my body just falls out, is much easier and definitely gets me more “ good” days than the not so good days. (Also, eating small frequent meals for me as chewing often wears me out.)

I cannot even imagine living in that altitude , although I know CO is beautiful as my Daughter’s Fiancé and his family are from there, Gorgeous! I was told NOT to travel there from my PH doc. I do think wearing it continuously is not easy but should definitely help you feel some relief. It does get easier as you see the benefits. It should also help with the chest tightness, if it’s not, talk with your PH Doc as you may need more meds, or adjustments. I do know some PHers who moved to lower altitudes, others were not able too, but the oxygen seemed to help some. Unfortunately, that chest tightness is often just a part of my PH symptoms and even with my medication regimen, I too, still get days that I have the chest tightness or “ elephant on my chest” feeling. Hoping you get some relief soon, I also hope you can continue to wear your oxygen continuously and see the benefits soon.

Take care and we are all here for support.

[Brittany Foster]

Thank you for all the support on this Jen. I know your words will definitely mean a lot to Valerie. I understand completely what you are talking about with the chest tightness. As I have said in other posts, massage therapy really has helped me a lot with at least loosening up that muscle. I also find that my neck and shoulder muscles are very tight almost constantly. I have been told that this is from using these muscles for breathing because my chest muscles restrict my breathing.

[Valerie]

Thank you Jen and Brittany
For you support. I’m overwhelmed with the great encouragement. I’m so happy to have found this web site.
My Doctor is not to informative regarding PH.
I will definitely ask more questions on my next visit!
Yes, I have been told I should move but I do not see that happening anytime soon.
I was confused about the chest pressure and tightness after wearing the oxygen longer then I normally should be. I was hoping to feel better. But instead I feel heavy. Rubbery, fatigued and alot more light-headed and dizzy on and off. I should mention I deal with various chronic pain areas through out my body, neck and lumbar surgeries. Right shoulder surgery. Various internal surgeries, fibromyalgia, systemic sclerosis, migraines and polycythemia.
I could keep going on but these are battles I deal with everyday. This PH is new but I have a feeling I have been dealing with this longer then I know. I do wear C pap at night and still struggling to get used to the head gear. But as I get discouraged I know I can count on my new friends. I haven’t given up altogether. I do work part time as a property manager, I was a former Med Assistant for many years. Which I miss.
Not sure how much longer I will be able to continue Property Management.
One thing at a time. I will have more questions as time goes on. So far no meds have been added to my PH diagnoses just the oxygen.
I am fearful of those meds. I watched my dad decline to COPD and emphysema and pass away from respiratory failure due to pneumonia.
I have to say the chest pressure is scary!

[Valerie]

Thank you Kathleen for the information. I will ask my Doctor regarding meds that may benefit my situation.
I do take amlodipine and a baby aspirin now. I do not have high blood pressure. I was given this med for the polycythemia and Raynaud’s. So many things to consider. I have further testing the next couple of months. Perhaps I will be starting some of these therapies.
I do agree that starting a good therapy early would definitely help me especially at this elevation until I do move.

[Kathleen Sheffer]

I take amlodipine and baby aspirin too, haha! They’re apparently standard post-heart-lung transplant.
Sounds like you are going through a whirlwind right now and I don’t need to overwhelm you further. There are a lot of options available now that weren’t around when I was diagnosed over 18 years ago (wow I feel old – at 25)!
It’s a process to see which medications you tolerate (many of them have nasty side effects themselves) so be kind to yourself through this. I am glad you are feeling more comfortable wearing your oxygen, as it should make you feel better and help you do everyday tasks.
Furthermore, I am so glad you found our forums so we can go through the ups and downs of your journey together – it takes a village.

[Valerie]

Yes that is what scares me the most is the meds. If it were up to me I would not take a thing! I must admit I am very stubborn when it comes to meds. And truly I am stuck in denial right now. There is alot to process and when you are fatigued and feel I’ll you just want to ignore everything. I have learned how to cope with pain. Breathing is something you can’t ignore lol! It is wonderful to have support!!

[Kathleen Sheffer]

Absolutely! I cannot imagine going through this on my own. There are so many times my parents saved me because they insisted I change to a bigger (less cute) pump, or insisted I go to the ER instead of “sleeping it off.” They were the ones to make the decision to put me on IV treatment from the start (six-year-old Kathleen would have said “no way,” given the choice, but I wasn’t).

Do you have a friend or family member in your life who can accompany you to appointments and testing? They may see things more objectively because they are not feeling all that you are feeling. Wanting to ignore everything, curl up in bed, etc, is a totally normal response for you. Ultimately you get to make the decision, but having someone you trust weigh in on the matter may be better for you in the long run.

[Valerie]

It is me and my husband. He has to work during my appointments. So it is only me who goes to my appointments. I don’t have alot of support at all. This is why I seek out forums like this. And it is good because everyone understands my symptoms.i will try my best to be a good patient and do as I’m told. It is for my benefit.
I now know I can come here.

[Brittany Foster]

Valerie,
I’m so glad you found us on the forums. My boyfriend works pretty much all week and it is hard for him to take time off because he is store manager of a Firestone. When he has the day off that coincides with my appointments he does go with me. But it’s sometimes hard to coordinate his day off because I usually get what ever is first available for an appt time. The forums have been so helpful for me as well. I love talking with people who truly get it, especially on my difficult days. Its comforting to know you have the support of so many of us on the forum! I hope they can figure out what is going on with all of the chest pressure that you have been experiencing even with the oxygen. I still get shortness of breath and my oxygen levels still drop into the 80s sometimes and it can feel very frustrating as if what I’m doing to take care of myself is all for nothing. I know it’s not all for nothing and its better to have some solutiona than nothing at all. We are always here for you to support you!

[Valerie]

Good morning all.
Hope you have a awesome morning and your day is blessed!

[Brittany Foster]

Hope you have a great day too Valerie ! So far, mine has been off to an okay start 🙂

[jen-cueva]

Aww hope your day was a good one, Valerie!
I actually had to go to Apple store today with my phone issues, it’s at the Mall about 5 minutes away so my hubby took me as he was off today and pushed me around the mall to look some aswe waited for my Apple appt, lol

It was a nice day out, so I’m resting in my recliner with my feet up!

[Valerie]

That sounds awesome! I had my grandson today who spices up my life. he will be 2 in December. It is a bit of work, but I just can not pass it up. some day he will have to carry me around!

Looks like we have fall and winter here in Leadville, snow started early this year. I do not mind it at all, but my husband
will when he has to shovel! We get snow to the top of the fence and higher. winter is especially hard on me in all of my health issues. but I love where I live and I honestly dont feel that if I moved that I would feel at home any where else.
Hope everyone is feeling well.

[jen-cueva]

Brittany,
Can you send me more info on the massage therapy? Interesting fact about overworking those muscles. I may check in to that .

Valerie,
That sounds like a great but tiring day, for sure!
Anothe4 thing, idk if it’s already mentioned, but keep a daily journal of your symptoms, etc so you can show your PH Specialist on your next visit. Also, if you’re going alone, take a notebook to wrote things down. I hope that your doctor can start you on more meds to help with the PH. I’m sure that elevation and cold winter isn’t a good combo for your health issues. It’s high 70s-low 80s here in Texas, our Fall is starting, lol

[Brittany Foster]

Hi Jen and Valerie,
The massage therapist that I see is a medical muscular massage therapist. She has her masters degree in massage therapy for patients with medical conditions and works on the deeper tissue so it is by NO MEANS a relaxation massage. I have been going to her for years. I am not sure if insurance would cover it, for mine I pay 60 dollars every time I go which is usually once every other week or every 3 weeks depending on how I feel (and how much money I have). I would start by searching for medical massage therapists in your area or asking offices like a PT office if they have massage therapists (maybe if they are in more of a clinical setting you could get it covered by insurance).

[Valerie]

Yes the massage therapy sounds amazing. I to would be very interested in the details so I can mention to my PH doctor.

I never considered that the muscles in my neck and back could be effected by this new problem.

I was also wondering if at some point I would have to go through a right heart catheterization upon getting a DX of mild PH? The other thing that concerns me is I have 4 pulmonary nodules in my lungs. They are not very big but they are accumulating. I started out with one years ago and now up to four.

My mother did say as a child I had bronchitis quite a bit and spent many times in the hospital. I was told I was supposed to see a lung specialist but my parents moved from Denver to Leadville and I made a good recovery so I never went to the specialist.

I have never smoked or compromised my lungs. Just a bit confused as to how all of this started.

I will start a journal so I can see how I progress in this journey and hope that at some point my husband can join me at my appointment to help him understand this journey. He was very impressed with the support from all of you and he did learn
Alot from the feed back. So once again thank you ladies for your information and support!

[Brittany Foster]

Hi Valerie,
so interesting about the nodules. I have a couple nodules on my left lung and it seems like my breathing has been progressively worse over the years. One of the biggest struggles for me has been putting together the pieces of how all of this started and why I have what I have to try to make sense of things. For me, it is a combination of the congenital defects I was born with, neurological complications that have effected my lung function and breathing, and other abnormalities that have either been there since birth or that I have developed over the years. It’s a collection of things which makes treating is difficult. I also used to get frequent respiratory infection and still do! My bronchitis is pretty much chronic now because I have had it recurring for a month for the last few years. It definitely has taken a toll on my lungs and breathing for sure! I had meningitis 4 years ago and it was pretty much all downhill from there.

[jen-cueva]

Good morning Brittany,
Wow, those messages seem intense, are they ? As I’ve only ever had 2 relaxation massages, and one was last year, that bruises me and the therapist went easy on me. She did say my neck and back was very tight and I knew I feel that often. I’m not sure I could to,erase the messages you get, lol

I do try and get in my pool when I can and do water therapy as it helps my legs most of the time, I have the leg and pain and heaviness in my legs. So I try and do that when it’s not too humid here in Texas and I have enough energy, it definitely relaxes and helps the muscles some, as well.

I tend to get bronchitis often, I’ve gad it twice as well as Pneumonia since August, it’s not unusual for me to get Bronchitis several times a year, that’s why it’s so important to know our bodies and have a good doctor that wants to treat this and other issues fast, as we tend to develop Pneumonia fast. We must be proactive!

Wow, Brittany, I don’t remember you having Meningitis, wow, so scary! You both have definitely lots of issues going on, I know with the PH, adding one or more other illnesses makes it harder to treat as well as figure out some days what is causing the issues,definitely an ongoing battle! Brittany, from what I see and read about you, you do a great job of juggling this all. Valerie, I am sure is grateful as well as us all for your contributions.

[Brittany Foster]

Thank you so much Jen. I definitely have my days where it all feels out of my control but I enjoy coming back here to talk about it and realize that others are going through something similar. Not feeling so alone in this is one of the biggest things that i have gotten out of managing the forums and seeing all the replies and comments from everyone.

I’m sure you would feel bruised if you went to the type of massage therapy I went to lol! It is deep tissue so it works to relax the tension on the deeper muscles of the body. She even worked on the muscles that help to relax the diaphram for me and those were very tight spots too (that one didn’t come as much of a surprise) But the neck and shoulders definitely were pretty tight and stress in general tends to get held there too (or the lower back in some). I’m glad you have found water therapy to be helpful for you! For some reason being in a pool and trying to swim or even walking in the water makes my chest feel even tighter ! I never was a big swimmer but was fine about going in the ocean, now I can last a few minutes and I’m gasping ! I love hearing about the water aerobics or water therapy that people have done though! It seems like a great activitiy and workout !

[Valerie]

Hello ladies.
Sorry I did not respond earlier. I had a busy day..
Relaxing now.. TGIF!
Interesting facts shared above. Thanks for the info.
And wishing everyone a happy weekend!

[Brittany Foster]

Hi Valerie
Hope your weekend is off to a good start! I have had a heck of weekend so far with bronchitis and breathing treatments and steroid injections on Friday to losing my balance on the stairs , falling down and being in a leg immobilizer. Just left the hospital a few hours ago 🙁 !!

[Valerie]

Oh my goodness!!
I am so very sorry to hear that you are going through so much! I feel really bad. If I could change all of that for you I really would 😥. I will definitely keep you in my deepest prayers and just ask that God would give you the strength to overcome this and just keep your spirit in positive thoughts. Rest and please get better. No working for you! You are in my thoughts my friend!

[Brittany Foster]

Thank you so much Valerie ! I truly appreciate it a lot and appreciate the positive thoughts and prayers. I’ll still be working this week with the kiddos I nanny and always need to keep myself busy somehow or another lol! I’ll take it a lot easier though for sure ! Especially with the kids ! It’s hard enough running around trying to keep up with their energy hahaha!

[Valerie]

Ok, just remember you need your strength And rest to recover. I am guilty of pushing my self too so I understand lol. Blessings and rest rest rest.
Have a good night!

[Brittany Foster]

Thank you Valerie!
Lots of times I need the reminder to slow down too!

[jen-cueva]

Ohh no, Brittany!,
What a start to the weekend, so sorry you have all of this at once! Gentle hugs and prayers that you get some relief soon, Do you keep a nebulizer and breathing treatments at home as well? I know I do, and that and the steroids often help, just takes awhile! Hope you are resting the rest of the weekend as I know you’ll be busy during the week. Please take care and let me know if I should send you bubble wrap for those times you lose your balance, that’s definitely no fun!

[Brittany Foster]

Hi Jen,
I could use all the bubble wrap in the world right about now hahaha! Thank you for reaching out and for the positive thoughts and prayers sent. Yes, I do have nebulizers and treatments at home to get me out of it initially then when I still feel constricted I have to go to the walk in to get more stabilized or see my doctor if they are available. Seems like this weekend has been one thing after another but I’m sure there’s nowhere to go but up from here.

[jen-cueva]

Lol Brittany,
I’ll definitely have to stock up on bubble wrap, lol

Yes, I do the same , I try to use the nebulizer at home as soon as it starts, but often I stil end up at the clinic or hospital.

You are correct, only can go up from there…🤗