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What is on your medical calendar for April?
No fooling; it’s April already! What do you and your medical team have planned this month?
Just as April showers bring May flowers, I hope your April medical appointments bring you improved health next month.
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48 Replies
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@jenc, my calendar got quite busy last week and us going to be busy again next week. Last Monday I had the Endocronologist and new rheumatologist and the pulmonologist ordered a sleep study that thankfully could be done at the guesthouse. Endo went well, I don’t have diabetes but medication induced Cushings Syndrome – I just have to carefully watch my sugar, and the medical professions favorite phrase, lose some weight. Damn that part is hard, I’ve joined the SA equivalent of Weight Watchers, so far I lost, I gained, I lost again and now I’m right back at my starting weight (sigh).
The rheumatologist was very thorough. I had done some basic bloods before seeing him so he ad a bit to go on. He was immediately concerned by my kidney function which has been problematic for some time but no-one has actually taken responsibility to find out why. I think he’s my guy for that. He then did a bunch more bloods, told me to see a dermatologist (I’ve had a mystery rash for months) and an ophthalmologist because some of the lupus meds can affect your eyes. He wants both these reports before he will call me back for another consult to find the way forward. Of course I’m my own worst enemy, and here in SA we can access our blood results via an app (something to with access to personal information). So I ways look before doctors get back to me – these bloods threw up a few things that I’ve figured out. I now have hypogammaglobulinemia or zero immune system from the meds I take for the lupus and then one of the lupus markers came back ‘strongly positive” and this marker is closely related to ILD. Interesting.
Saw the pulmonologist on Tuesday, LFT was about the same, sent for a chest CT, and then did the aforementioned bloods – can you believe that took the whole day! Wednesday I’d managed to secure an appointment with the recommended dermatologist so we had to stay an extra day in Johannesburg. He did a few biopsies, and sent me home with a boat load of extra meds to cover ever eventuality.
I’m waiting to hear from the pulmonologist who told me on Thursday she’d speak to me later but it didn’t happen. I’m back to see the dermatologist on Wednesday nwe xt week and the ophthalmologist on Thursday next week and then I guess just move forward from there.
It’s exhausting and sooo expensive every time I have to go to Johannesburg. With all the drama my sister and her husband are causing I actually feel like just packing up and moving to Johannesburg.
Anyway, we’re about to have our nightly electricity blackout shortly and i need to make coffee, it so dmn annoying living in the country at the moment.
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Hi @traceyaustralianmigration-co-za, what a busy medical calendar you’ve had! It sounds like your new rheumatologist was the best visit overall since he sounds like he was thorough and wanted to get answers for things you have been left hanging with.
As you mention, making that trip to Johannesburg must be extra exhausting and expensive. Would that be an option to move there>? You would be closer to medical care and escape family drama, too. It sounds like a win-win if that’s an option.
Is it more expensive there? Do you own your home now?
What meds did they send you home with? You made me laugh as I picture the boat overflowing with a med for this, one for this, another for “just in case,” and so on. Hehe
Please take some time to allow your body to rest in between such busy medical weeks. Thinking of you and sending you positive thoughts and prayers as you continue to spring into April with a busy medical calendar. <3
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@jenc, well, my April didn’t start quite as I would have liked! There were a couple of medication changes made at my cardiologist follow/up March 24. So my body is trying to adjust, but it’s not too bad so far, though I still feel the metropolol needs to be tweaked further. I had repeat labs last Friday because the one on March 24 showed a little concern with kidney function. Waiting now for results and call from NP to see if lasix needs to be further adjusted.
So, with that situation ending my March, I started April not feeling well – sore throat, sinus pressure, cough. Went to doc today and was put on prednisone for 3-4 days and given a prescription for antibiotic as well if needed. I’m not feeling quite so good, but am resting and doing all I know to do to take care of myself.
So I guess the med changes will be an ongoing challenge for this month. I have a dentist appt lined up, and so far have no other appts for April. But, trust me, with me that is so apt to change! Actually I am waiting on a call from the clinical trial research team to start the process for seeing if I’m a candidate for mitral valve replacement. Quite a decision to make and I’m not even sure I will go through with it at this time. I may not be a candidate anyway because my PH pressure is 78, which may disqualify me.
Oh well, I’ll dwell on the spring and new birth, new starts and try to not worry so much abt the negatives of my health. I’m grateful each day to just wake up!
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Hi @deetweedy, I’m sorry your April has not started as expected. Medication changes and increases can take a toll on our bodies. Plus, adjusting to a tiny change takes time, so if you had several, give it more time.
I’m grateful that they are keeping a close eye on your labs. At times, I am at the local lab twice a week. Sadly, the sweet receptionist, Maria, knows me by my first name and probably my DOB by now. Hehe
I hope the steroids and antibiotics help you feel better. Everyone is getting sick. I’ve been trying to catch something for the past few months, and it resolves. This crazy weather isn’t helping. But I see my doctor tomorrow, and she will probably order the same, a steroid dose pack and antibiotic. My old PCP would have these two on file at the pharmacy whenever I felt something coming. You know how easily our colds and flu can become bronchitis and pneumonia.
The clinical trial for valve replacement sounds interesting. Please do let us know how the prequalifying stage goes for you. You never know; some CTs have such exclusions, and others, maybe not so many. It never hurts to try. Is that local?
I am sending you positive thoughts and prayers that you get some relief soon from the cold symptoms and adjust to changes in your medications. Despite your chaotic start to April, you continue to be positive; I love that! Positive vibes for the labs that your kidneys are back to your usual.
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@deetweedy, just to let you know I had a mitral valve replacement in October 2021. I was diagnosed with mixed mitral valve disease and PH in 2019 and was repeatedly told that because my pressures were so high (around 95) I would not survive surgery. I eventually got to the point that I was going to die anyway, so my cardiologist found a surgeon who was prepared to do tbe valve replacement. It’s been a tough slog but here I am to tell you, it can be done and it is survivable. I was so terrified of the surgery but I knew it was a case of now or never. I was really scared of the pain and being on a vent. Turns out I was only on the vent for 3 days, most of which I was high on pain meds so don’t really remember. It’s initially painful when you do get back on your feet but it is bearable with proper meds. Because my valve was so badly deteriorated by the time I had the surgery, they could not use a mechanical valve, so I’ve got a tissue valve that will need to be replaced again in about 10 years. That’s if I survive the PH now 🤣.
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Hi @traceyaustralianmigration-co-za, thanks for sharing uyour experience with heart valve replacement with @deetweedy.
I can recall the days leading up to your surgery. You were so stressed and worried. However, you make it and continue to show others there is hope after heart valve replacement.
What a supportive and encouraging post. Offering the truth that recovery is challenging and reminding her that she will get through it! Thanks so much, Tracey.
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Kinda back to square 1. Got 2 of my 9 infusions of Gazyva left to go. So far it hasn’t helped my breathing. I am starting Venclexta (cancer drug) today and am in SD as I need 3 blood tests 3 days in a row to make sure I can handle it ok.
I’ll be back next week for my 8th infusion, CT scan, 3 more blood tests, and a visit with both my oncologist and PH doctor. I have been off Tyvaso for a year now and it never did anything for me. I am still on tadalafil. Through a series of screw-ups, I wasn’t able to get it or take it for 3 weeks. I did notice a difference
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Hi @wheeldog, great to see you post an update. But sorry you feel like you’re back at square one once again.
How are you tolerating the Venclexta so far? What side effects have you experienced with it, if any? Be cautious after receiving it since I can imagine it lowers your immunity.
Have y’all been in SD long? Are y’all staying with friends again or someplace else?
I hope things go well with the Venclexta and your labs are ok. Interesting that you did notice a difference when you missed your tadalafil when missing doses. Unlike your Tyvaso, it sounds like tadalafil is helping you, which is excellent news.
Say hi to Mary Ellen, and take care of each other. Please keep us posted on your labs and upcoming tests and infusions. Thanks for sharing an update with us all.
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Hey @wheeldog, how did your 8th infusion go? Didn’t you also have appointments with your oncologist and pulmonologist? How did those go?
Positive thoughts and prayers are with you. Say hi to Mary Ellen.
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Just got back to the camp site. Good news infusions are working and my lymph-nodes are getting smaller. Got 1 more to do in May. However, it isn’t doing anything for my breathing. So the cancer isn’t causing my shortness of breath. I took a few low dose Venclexta tablets to help kill the the cancer cells. That pretty much messed me up. Bruise easy, real short of breath, platelet count down to 23. Needless to say I am off it and starting a steroid to bring the count back up.
Saw PH doctor. She is going to order a bunch of tests. Guess the ball is in her court now. She is going to work with my oncologist and order a bunch of tests. I will come back in a couple weeks.
The one thing nobody thought of is reaction to the meds I am already taking. I have 2 blood pressure meds (metoprolol, lisinopril) and a blood thinner plavix. All 3 have shortness of breath as a side effect. There is a naturopath in Anchorage who worked at cancer center. His job is to figure out drug interactions and what supplements to use. There is nobody like that here so I will try him when I get home.
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April? First our thoughts are with Colleen and Brian and hoping we hear positive news soon. We send loving prayers and positive thoughts 🙏 ❤️
For us it is still trying to find answers to kidney and SIBO bloating which is getting worse. Have an appointment with my Rheumatologist on the 21st, PCP doc next week along with ostomy nurse and later the Dermatologist.
As the positive thinking little boy said looking into a room with a huge pile of horse manure, there must be a pony in there somewhere!!! We are looking for that pony!
Lots of warm hugs to you, Manny and little Zoe 🤗❤️🐶
Dick is fine, frustrated as I am. Cloud keeping him very busy since I have not been much help.
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Hi @cdvol3gmail-com, Yes, so very kind of you to keep Colleen, Brian, and the boys in our thoughts and prayers.
It certainly sounds like a busy month for you, my PHriend. I am sending you some extra hugs, love, positive thoughts, and prayers for answers.
Like Dick, I am frustrated that you still have no answers. Your positive thought and picturing that little boy searching for that pony made me laugh! Hehe
Yep, Mr. Cloud, I can attest, is keeping Dick busy. Manny was home the last two days, doing everything for Zoe and me. We kept him so busy he decided to go back to work today. Hehe
Please keep us posted this month after your appointments. We want to support you and celebrate when you do get answers. Take care of each other. <3
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Hi @cdvol3gmail-com, how did your appointment with your PCP go? When do you see the ostomy nurse and dermatologist again?
The rheumatologist visit is next week; I hope we get some updates on your worsening SIBO bloating. That must be incredibly uncomfortable, my sweet PHriend. When my belly bloats and swells, it is so darn painful. And you, my lady are much more petite than me, so I can only imagine.
Take care, and keep us posted.
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Hi @cdvol3gmail-com, I am thinking of you today. Hopefully, your weather is as beautiful and sunny as ours. How did your appointment with your rheumatologist go? Did you learn anything new?
Gentle hugs, love, and puppy paws from my house to yours.
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With everything that is on your mind right now …. thank you for reaching out to see how my appointment went.
My Rheumatologist suggested I start back on the Xifaxan 1/2 a tablet a day for a week and if I can handle that 1/day. I want this to work as the bloating even with just one day taking 2/day seem to work. So … we shall start tomorrow and see how it goes.
Everything else check out pretty well. Scleroderma is no fun but I am very lucky to have this guy on my team!
Sending very warm hugs from Port Ludlow to San Diego 🤗 ❤️ filled with love. Thank you so much. I hope you can fill your weekend with good memories, laughter and share what you are able to share with Colleen.
XXXXOOOO and puppy 🐶 paw hugs!
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Hi @cdvol3gmail-com, I also want your Xifaxan to work. You have been experiencing such horrible bloating for months. Extra positive thoughts and vibes are coming back your way that it will work without having such negative side effects.
Isn’t it horrible to determine if the pros outweigh the cons with treatments? I know you are one strong woman dealing with SubQ remodulin for years.
My nephrologist is ending me with rheumatology. I believe it is in May; I can only hope the one I see is as good. I’m grateful that you have such a knowledgeable and caring rheumatologist.
Are you all done for this month with appointments?
Thanks for your support and thoughtful words. I got some beach air time, which is always a refresh. Zoe sends puppy paws back, just a bit smaller than Cloud.
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Oh I really hope your Rheumatologist is going to work with you!!!
I am on the second day of Xifaxan 1/2 a tablet for a week and if that is okay I’ll gobto 1 tablet for a week and so on!
Tomorrow I have my Pulmonary Function Test at at the end of the month Dermatologist will take out some more chunks! Never ends does it? I know you go through so much more on top of covid! Wish you were near so I could help.
Snuggle up with Zoe – Cloud is going for a long walk with Dick and I will rest.
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Hi @cdvol3gmail-com, I’m so happy to hear that you’re doing ok with the lower dosage of Xifaxan. I hope and pray that the titration of it will benefit you more and that you’ll do better as you allow your body time to adjust in between each increase.
Blow hard and do a great job with your PFTs today. Maybe grab a nice lunch afterward as your reward.
Man, it doesn’t stop. As your dermatologist removes more chunks, I’ll send you extra positive thoughts and prayers for that later this week. Please do keep us updated.
Don’t forget to have some downtime and read a good book as you sip a refreshing cocktail.
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Hi @cdvol3gmail-com, I’m so happy to hear that you’re doing ok with the lower dosage of Xifaxan. I hope and pray that the titration of it will benefit you more and that you’ll do better as you allow your body time to adjust in between each increase.
Blow hard and do a great job with your PFTs today. Maybe grab a nice lunch afterward as your reward.
Man, it doesn’t stop. As your dermatologist removes more chunks, I’ll send you extra positive thoughts and prayers for that later this week. Please do keep us updated.
Don’t forget to have some downtime and read a good book as you sip a refreshing cocktail.
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So far so good on the Xifaxan hoping to up it to 1/day starting Saturday.
It use to be Dick who had the dermatologist taking chuncks – guess it is my turn. All those years sailing in the Caribbean, no sun screen protection, racing being sprayed with salt water … it all takes it toll. Thank you for your well wishes and positive vibes!
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Hi, @cdvol3gmail-com; that sounds great! I hope that the titration of the Xifaxan continues to go well for you. It;’s been a long time coming, and I know you’ll appreciate the relief.
Oh, I bet; sailing the seas certainly would cause an increase in risks of skin complications. We learn as we go, right?
Hopefully, this time will be the last of your chunks. Is Dick done removing his chunks now?
Take care; hopefully, you’ll be back sailing before you know it. Extra sunscreen and protective clothing this next go around, right?
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And here’s one reason my doctors tend to hate me:
I went to my first pulmonary rehab session today. Talking to the nurses and therapists. They took various kinds of measurements.
They said that some of my symptoms of exertion intolerance were likely linked to being dehydrated. Classic symptoms, they said. When I pointed out that I drink about 64 oz of unsweetened iced tea per day, not to mention one cup of coffee and other sources of fluids, they said, “Ah, but tea and coffee are not really good for hydration, because they have caffeine.”
I told them I was going to check in PubMed when I got home, because I have understood that tea and coffee are fine for hydration. People used to think they were bad, but now they’re considered to be OK.
They rolled their eyes and said ignore PubMed. Go go Mayo Clinic or Cleveland Clinic for info on hydration.
So I did.
They are wrong.
I am right.
And I will be sending them the info FROM the Mayo Clinic and the Cleveland Clinic to prove this.
PS — Ignore PubMed? The latest research on hydration? Ignore it? It’s not like I’m talking about going to Wikipedia or Dr. Feelgood’s site. <<sheesh!!>>
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Hi @brendad53, I’m sorry that you had this experience at rehab already. I think you both could be correct.
Good hydration does suggest limiting caffeinated beverages. I also think it is how we read the data. This is the information from Cleveland Clinic on hydration below.
My medical team also tells me to limit caffeine because it acts as a natural diuretic. Here it is on Mayo which says it can act as a diuretic and help meet your fluid intake requirements. This is probably where the confusion takes place.
Caffeine- dehydrating or not?But ignore PubMed? I’m not sure why they said that. Did you ask them? SMH.
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As for why they recommended avoiding PubMed, I didn’t press them on it. I didn’t want to push them up against a wall by seeming to denigrate their choice of resources. In the studying-up I did later, I focused first on their preferred resources.
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Here’s what I found:
(1)
Water: How much should you drink every day?
Water is essential to good health. Are you getting enough? These guidelines can help you find out.Is water the only option for staying hydrated?
No. You don’t need to rely only on water to meet your fluid needs. What you eat also provides a significant portion. For example, many fruits and vegetables, such as watermelon and spinach, are almost 100% water by weight.
In addition, beverages such as milk, juice and herbal teas are composed mostly of water. Even caffeinated drinks — such as coffee and soda — can contribute to your daily water intake. But go easy on sugar-sweetened drinks. Regular soda, energy or sports drinks, and other sweet drinks usually contain a lot of added sugar, which may provide more calories than needed.
(2)
Do caffeinated drinks, such as coffee or energy drinks, hydrate you as well as water?
Water is the best liquid you can drink to stay hydrated. But caffeinated drinks can help meet your daily fluid needs.
The amount of water your body needs varies. Your age, body size and activity level affect how much water you need. Also, where you live, if you have air conditioning when it’s hot, or if you work inside or outside can affect how much you need to drink. Breathing, getting rid of body waste and sweating are ways the body loses water.
As a chemical, caffeine increases production of urine, which means caffeine is a diuretic. But most research suggests that the fluid in caffeinated drinks balances the diuretic effect of typical caffeine levels. High doses of caffeine taken all at once may increase the amount of urine the body makes. This is more likely if you aren’t used to caffeine.
BRENDA NOTES: I do not take high doses all at once. And I have drunk tea like this for decades, so I am certainly used to it!
To make my tea, I use a “family size” teabag in 1/2 gallon of water. That’s how strong the tea is.
If I put ice cubes in my glass, that concentration gets watered down as the ice melts.
(3)
From: https://my.clevelandclinic.org/health/articles/21140-hydration
HYDRATION
What should you know about hydration?
Fluids can come from a variety of sources including water, milk, 100% fruit juice, tea, coffee. Alcohol, particularly in large amounts, can cause the body to get rid of more fluid; so if you drink, do so in moderation. Avoiding LARGE AMOUNTS (emphasis mine) of caffeinated beverages can also help you stay well hydrated.
(4)
Citation: Maughan RJ, Griffin J.
Caffeine ingestion and fluid balance: a review.
J Hum Nutr Diet. 2003 Dec;16(6):411-20. doi: 10.1046/j.1365-277x.2003.00477.x. PMID: 19774754.
Results: The available literature suggests that acute ingestion of caffeine in large doses (at least 250-300 mg, equivalent to the amount found in 2-3 cups of coffee or 5-8 cups of tea) results in a short-term stimulation of urine output in individuals who have been deprived of caffeine for a period of days or weeks. A profound tolerance to the diuretic and other effects of caffeine develops, however, and the actions are much diminished in individuals who regularly consume tea or coffee. Doses of caffeine equivalent to the amount normally found in standard servings of tea, coffee and carbonated soft drinks appear to have no diuretic action.
Conclusion: The most ecologically valid of the published studies offers no support for the suggestion that consumption of caffeine-containing beverages as part of a normal lifestyle leads to fluid loss in excess of the volume ingested or is associated with poor hydration status. Therefore, there would appear to be no clear basis for refraining from caffeine containing drinks in situations where fluid balance might be compromised.
(5)
From: Silva AM, Júdice PB, Matias CN, Santos DA, Magalhães JP, St-Onge MP, Gonçalves EM, Armada-da-Silva P, Sardinha LB.
Total body water and its compartments are not affected by ingesting a moderate dose of caffeine in healthy young adult males.
Appl Physiol Nutr Metab. 2013 Jun;38(6):626-32. doi: 10.1139/apnm-2012-0253. Epub 2013 Jan 15. PMID: 23724879.
Acute and chronic caffeine intakes have no impact on hydration status (R.J. Maughan and J. Griffin, J. Hum. Nutr. Diet. 16(6): 411-420, 2003), although no research has been conducted to analyze the effects using dilution techniques on total-body water (TBW) and its compartments. Therefore, the aim of this study was to investigate the effects of a moderate dose of caffeine on TBW, extracellular water (ECW), and intracellular water (ICW) during a 4-day period in active males. …. These findings indicate that a moderate caffeine dose, equivalent to approximately 5 espresso cups of coffee or 7 servings of tea, does not alter TBW and fluid distribution in healthy men, regardless of body composition, PA, or daily water ingestion.
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Hi @brendad53, did you share this information with the team at rehab? As I mentioned, the answers to these questions can be confusing, as some resources contradict others.
Being in healthcare, I think they would use PubMed, so IDK.
My hubby also drinks iced tea, and I remind him to drink water. Dieticians learn to educate patients and clients that water is water and ice. Other liquids such as teas, coffees, etc., can help with daily fluid intake but don’t “count” as water. Everyone needs to be on the same page when patients look to them for education.
As you mention, you have been drinking tea like this for years. It also may depend on what one’s body is accustomed to, right?
Thanks for sharing, and your bold statements look ready to show the staff at the rehab. When do you go back?
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I go back on Monday. Tried to email the excerpts to them, but no luck. The university and the hospital system no longer make it very easy to get staff and faculty email addresses.
The articles all seem to concentrate on fluid intake, and water is among the acceptable fluids, but is far from the only acceptable fluid.
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Hi @brendad53, maybe you print out some of the information, or you can show them on your phone while there today. I also hope you learn some new breathing techniques today and helpful things.
Remember that they only offer their opinions on the causes of your SOB and oxygen saturation. Your medical team should then consider their notes and your feedback, lab work, and other pertinent information when they look at the letters from the RT.
Please keep us posted as you continue to work with them at rehab.
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Very interesting. I have always been told by doctors that any liquid you drink is counted in your daily intake as well as food with high water content (watermelon, spinach as stated).
I can’t have caffeine because of my heart, so of course I drink decaf tea and coffee – so these articles don’t really pertain to me. But the articles are very interesting and it appears to me that any fluid in moderation, caffeinated or not, counts toward your targeted intake for proper hydration.
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Hi @deetweedy, yes, I agree this is interesting. Some doctors often separate water and fluid intake. One of my first kidney doctors wanted me to drink so many ounces of “free water,” The remainder of my fluid limit should go toward other things like eas, coffees, soups, etc.
Yes, we must be cautious with those fruits and veggies with higher water content. The summer crops of fresh cucumbers and watermelon are often a struggle when managing my fluid restriction.
Of course, we are all different, so check with your medical team for your fluid requirements and restrictions.
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What to do when you keep getting error message: your reply cannot be created at this time???
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Hi @deetweedy, if your post is too long or you post too quickly after another, it may come up. I would suggest signing out and back in to see if that works. If not, clear your history and cache, or try a different browser.
It may not be you; sometimes, the site has a mind of its own. Please let us know if this continues.
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Thank you Jen. 😊 I will try that and see what happens!
Finally got March 31 lab results, and kidney function is much improved – lasix stays the same. Metropolol does need tweaking and NP has done that. Crud is better, but slow in leaving. So hope the rest of April gets better! Lol. I need to practice what I preach: I often tell my husband (sometimes my grandchildren too!) to “grow some patience!”
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Hi @deetweedy, so grateful you finally received your lab results and that your kidney function was improved! That’s always a win in my book!
I’m hopeful that the adjustment in your metoprolol helps, too.
Too funny; I think most of us are guilty of “not practicing what we preach.” Patience- that is a great one. I, like you, feel the same. I want it and want it right now. Unfortunately, things like the crud can take longer for us with PH to resolve fully.
I’m sorry, and I still have not developed that patience mindset after having PH for 18 years! My hubby, Manny, tells me it’s because I’m a woman! Hehe. Funny, I know men who are so not patient, too, like him, LOL.
We hope everyone has a week of positive results with any medical tests or appointments. Let us know how we can support y’all, and update us with your results.
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Have a wonderful Easter! Colleen and her family too, as well as all who post on this site. Actually, my birthday is on Easter Sunday this year, so I will have double blessings to celebrate and be grateful for! 🙏
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Happy Easter birthday, our PHriend @deetweedy! I hope you celebrated that much more as you count another year of blessings!
What did you do to celebrate? I hope your daughter and grandkids surround you and other loved ones who are special to you.
So many celebrations during the week of Easter! Congrats and Cheers to all celebrating these special milestones on Easter weekend!
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Hi Jen. Thanks for the well wishes. Yes it was a wonderful weekend. I went to my daughter’s on Saturday and made cookies and dyed eggs with the kiddos. Lots of fun! Making memories….
Went to church Sunday and to my daughter’s house after. A wonderful day…my son and his longtime friend were there (she’s like a DIL to me). And a few of my SIL’s family were present as well. We had 17 present in all! I had stuffed abt 60 plastic eggs with candy and quarters, so the 2 younger ones had fun hunting them.
I hope you had a great day as well. Did you do anything special? I hope you had contact with your daughter in some way.
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Hi @deetweedy, how are you managing this week? You’ve been quiet, so I thought I would check in with you.
@brendad53, you must be busy editing this week. How’s your therapy going so far? How many days are you going this week?
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Jen, I went back to pulmonary rehab on Monday (yesterday). Chest tightness and pain, as usual. Pulled out again, per their protocol. The doctor overseeing the rehab program strongly suggested I go to ER via ambulance even though we knew there was NO heart attack happening. So I did. He said I’d never had a left heart cath, and I needed one. So I should be admitted to the hospital and get the cath.
Spent 12 hours in the ER. They said, “Hon, you’re fine. You’re not having a heart attack.” Which I knew and told them going in.
They attributed the desire for admittance and a L heart cath to me…not to me relaying what the doctor at pulmonary rehab told me repeatedly. Just to me. As if I was a neurotic patient who had decided on her own what test I needed. Which p**sed me off this morning.
I was referred out to chest pain clinic, where I consulted today. Looks like a L **and** a R heart cath — simultaneous — are in my very near future.
Any comments about what it’s like to have a L heart cath?
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Oh no, @brendad53, I’m so sorry you had this trip to the ER. I’m frustrated with how they made you feel. I’m sorry; you shouldn’t have to deal with that treatment.
It’s common for people to undergo a Right and Left heart cath at once while in the diagnosis phase. I had both the first time. For me, the only thing with the left heart cath is lying flat for so long afterward. Besides that part, they are pretty much the same type of procedure regarding how it feels, etc.
Besides being mad and frustrated, how are you feeling today? Are you back to your baseline?
Do you have any idea when this may be scheduled? I’ll keep sending you positive thoughts and vibes, great big hugs coming your way- and maybe a pint of your favorite ice cream. 😉
So, the chest pain center would mean a different(new) doctor; the cardiologist will see you and perform that procedure, right?
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Well, Jen, my feelings are a constantly moving target. The chest pain doc said that given my cancer treatment history, it’s also possible that the pericardium surrounding the heart has become calcified and stiff in spots and is sticking to my heart, which is impeding how the heart fills and empties. So my medical future is quite unknown.
Yesterday I told the doc that I did not want sedation for the double cath procedure. He of course said, “But we always do it like this.” I had to implore him with multiple “pleases” to consult with my shrink for a fuller explanation of why no sedation would be best for me. Apparently he did, for he came back with a very caring and conciliatory attitude. So that improved my mood considerably.
It does comfort me to know that this double cath thing is common for folks who are diagnosed with PH.
And BTW, a pint of ice cream ain’t nearly enough!!!!! LOL!! 🙂
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Hi @brendad53, I’m glad you’re feeling more at ease with the doctor from the chest pain clinic. The explanation regarding your cancer treatment is logical yet interesting!
Nonetheless, it’s unfortunate you had to advocate for his attitude adjustment. I’m grateful he eventually listened and consulted with your psychiatrist, investing additional time for you. I’m starting to appreciate him – now, let’s keep our fingers crossed that his dedication persists.
So, have you heard yet when they will do this double cath? Please keep us posted, and I am excited to listen to his thoughts afterward.
We stand by your side, offering support as you brace yourself for another significant milestone in your medical journey.
Well, maybe that and a few gallons of your favorite ice cream, my dear PHriend.
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Hi @deetweedy, please try to post on this topic again and let me know what happens. After writing a simple sentence, you can click reply at the top of the text box. Thanks.
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Hi @deetweedy, it sounds like a beautiful Easter and birthday celebration weekend! Yes, I loved making cookies, cupcakes, and dying eggs as a child. What precious memories for you and the kiddos, too.
Sunday sounds like it was a busy day celebrating after church. That’s a pretty big group. Watching the kiddos hunt the eggs is always the best part. I’m grateful that you had such an incredible Easter/birthday weekend.
Well, we had plans. However, Manny came home sick from work on Friday. So, we had a quiet day at home resting. Of course, we talked to our daughter, and she was surprised the Easter bunny delivered Easter cookies to her door on Saturday!:D.
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Hi @jenc, driving back into Johannesburg this morning made me remember why I moved away 5 years ago. I lived here for over 30 years but this city is a real dichotomy – you have extreme poverty on the one side and extreme wealth on the other. And those of us who just fall in between. I actually feel my stress levels increasing when I hit town. There is so much crime, and so many beggars, and so much aggression from complete strangers, the road rage is beyond comprehension and it just seems that everyone is angry all the time. It’s tough living in South Africa but Johannesvueg takes tbe cake. How I survived 30 years here is beyond me. When my mom died I moved away, sold my two bedroom apartment with no garden for more than I paid for a 4 bedroom house with a massive garden in Dullstroom. There are only about 500 residents in Dullies so at least when someone gets aggro you know their name 🤣. I lived in my apartment for 15 years and never knew the names of one of my neighbour’s. I now have my dream house, with my dream view and my dream garden for my dream doggos. I wouldn’t be able to afford more than a one bed apartment in Jhb now with no garden. When I’m feeling exhausted from doctors visits I feel like I could move back here, but when I recover I realise I can’t give up the lifestyle I have now. No amount of convenience can compensate for the stress in this city.
Family drama aside, there’s not much stress in Dullstroom. Family I can tell to go away when they irritate me, but the city of Joburg doesn’t back off for anyone.
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Hi @traceyaustralianmigration-co-za, I didn’t realize Johannesburg was so rough. However, I knew of some struggles there. But of course, we only see what the news shares, so there is nothing in between.
It sounds like you are in the best place for you and your fur babies. Yes, living near or in a larger city with more medical care is often something I bet others can relate to when having emergency needs. Otherwise, like you, as we recover, we prefer to be isolated in our own space to enjoy what we love. Your loves must be your garden, view, and doggies.
You crack me up about the family drama. Yeah, we can tell them to leave, hehe.
I hope you had some positive appointments. Please let us know how those went once you are rested.
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We are over halfway through the month already. How have everyone’s appointments been going?
Are there any new updates you want to share or need us to support you through? We are all here to celebrate tiny wins and listen as you need to vent.
If you’re like me, I feel like the month is flying by, and I am still stuck in March. Is it just me, or have y’all felt the same?
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As we coast into May before long, what appointments do y’all have upcoming that we can support you through? Did you finish up your appointments for this month?
We would love to hear your updates or any planned event you want to share this month.
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