Hello, I am new here

Hello

I'm newly diagnosed with Pulmonary Hypertension less than 5 months ago. I've been on vasodialator therapies and also Lasix and Warfarin.

I came down with a nasty virus about 6 weeks ago which dropped down into my lungs. I was on ZPack for a week and now as it has hung on I've been taking Robitussin to get rid of the gunk in my chest. I believe the virus is at its end run. I have been unable to sleep for any length of time lately.

My Primary Doctor called on Tuesday to tell me that I am low on Vitamin D and Potassium and also that my platelets are low. She said she was not concerned about the low platelets, just that she wanted to keep an eye on it ... and then She called in a prescription for potassium supplements and Vitamin D also.

.

Now, Last two days I've been waking up with hyperventilating. The first time it occurred, my heart was racing. This morning, my heart was fine, but I was very short of breath. I checked my oximeter and i was at 96% - 97% ... after 45 minutes of this, I took some Robitussin to thin mucus in my chest .... and within a short time my breathing returned to normal. I began coughing up gunk.

Just saw my specialists on Wednesday and completed all my pulmonary tests. Everything seemed fine at that time. I also had few complaints at the time having only one episode of hyperventilation and the galloping heart. The specialist didn't think it was something to be overly concerned about..

Is there a correlation between hyperventilation, and vitamin deficiencies, low platelets ... or is this new development likely just due to my getting over this virus.

I'll likely call the clinic / hospital this afternoon, but most often when that, they doctors usually say to come in to get checked. I try to avoid hospitals because this is where I originally caught this nasty bug.

Thanks for any input you might have!

19 Replies

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  • Hi honey

    First of all welcome to our family you will find lots of support here and lots of advice im know will follow me.

    I can answer your question about them being linked but studies have shown that we can get the vitamin d raised buy simply sitting out on a bright day which isnt easy here i know but apparently it works.

    Potassium levels can be raised with bananas on one hospital visit my consultant actually popped in my room with one and told me they were very good.

    Stick around you will soon know more

    mandy

  • Dear Mandy,

    That was a great answer, yes ten minutes in the sun per day is great.

    I have to be careful not to do to much as its extremely hot in Australia presently. We have just gone into Autume so hopefully the temperature to decline. Yes Bananas we have them growing so it's easy for me to have a few a week. Good luck.

    Great answer Mandy.

    Thums up.

  • Oh we dont have that problem here in Wales i have more chance of being burnt by my bedside lamp than the sun x

  • How come all the text below is not bold type? I am too new to know...lol

  • Hello TequilahCat, and welcome to the Community. I am sure you will find some of your country-folk along soon who will understand how your health service works. All very different to ours. As Mandy has already said bananas are about the best way of getting Potassium into the body. Vitamin D just needs a drop of lovely sunshine to get your daily levels. Something that a lot of us find very hard to get. One thing that you will soon discover is that a large amount of medications have different names in the USA to the UK, so you may have to do a bit of research if you need to translate any of those. Above all, please enjoy being here.

    Regards Rib

  • Thank you for the warm welcome!! I'm grateful to be able to connect ... I truly need the support to keep a healthy positive outlook!

    I am pretty sure I've got the correct UK med names:

    I'm on:

    60 mg of sildenafil citrate 3x per day every 6 hours

    20mg of frusemide for water retention

    .05 treprostinil sodium via effusion pump

    The rest of meds I'm on are to control possible side effects, .... (Omeprazole / Prilosec; Imodium; etc ... ) however, most of of my side effects of the above meds have diminished.

    I had a good amount of fluid around my heart by the time they found the hyperetension, and my blood pressure was quite high. The good news is that the water around my heart is receding. I first lost 30% initially and now it's continuing to come off gradually.

    The set back is the most recent events with the cold virus, the shortness of breath and the hyperventilation. I'm hoping that it's all part of recuperating & the doctor on more than one occasion has reminded me to not over think the worse in this situation as it could be my own process of returning to some relative stability.

    Because of the new developments, I am getting very little sleep ...

  • Hi and welcome, you say that you have woken up hyperventilating on a couple of occasions. I was wondering if you could try to sleep propped up with pillows as that helps me with my breathing ...also try the pursed lip breathing as shown on You tube. Gently breathe in through the nose and gently out through pursed lips....repeat a few times.

    Heliginics post on the Alexander technique is good too....breathing with a relaxed chest and diaphragm..and recognising that emotions effect the breath rate.

    I try and meditate every day to and that helps with the cycle of anxiety .

    My youngest asthmatic daughter has been diagnosed with low Vit D levels and she has been prescribed tablets...she has also had low potassium in the past.

    Take care

  • Warm welcome TequilahCat!! Really difficult to answer some of your questions without being a respiratory specialist. As several have already said: bananas are a great source of potassium and also a great snack instead of nasty sugary things! Vitamin D: personally I have found it has helped me avoid frequent colds since I started taking 25 micrograms every day. UK sun ratio is limited, but more importantly because of my various lung impairments I do not go out every day.

    Your various medications: could you ask a good pharmacist to do a robust Medication Review?? This is something which is increasingly done in hospitals in the UK and also sometimes in Primary care although, alas, implementation is patchy.

    To achieve a good Medication Review, you would also need to give the pharmacist a complete list of all the medicines and supplements you buy over the counter as these can lead to all kinds of interactions with other medicines.

    Nutrition: we have mentioned bananas; you may wish to consider grating or shaving fresh ginger into salads and in herbal teas as some people find this reduces the amount of sputum in the airways; some also cut down or stop using dairy products to minimize gunk production.

    Hope you can soon find some answers to help you manage your condition.

    Take care

  • As a fellow PH sufferer. The SOB on sleep is not uncommon and also can cause Sleep Apnoea. I get occasions were I wake gasping for breath! I have had 2 tests for SA but neither were bad enough for treatment. I take it you have had a CO2 test too?

    Now the fast heart rate could be you are a tachycardia sufferer or it is the PH making the heart beat faster to get the O2 to the lungs/heart? I was due to have a Pace and Ablate installed but as soon as the PH was diagnosed they cancelled it. I have Atrial Fibrillation and Tachycardia which I have been taking tablets since 1992 to try and control it including Warfarin.

    I was put on Water tablets but they only made me go to the loo loads and feel like I had been kicked in the kidneys. I was taken off them.

    My lung Doctor has asked me to come off my Beta Blockers and moved over to Calcium Channel Blockers but has not told my GP or Cardiologist what to? All I can remember is being on CCB once but I do not think I reacted well to them?

    From my own research it seems that as we are not a huge bunch of people, that there is little research on cures/control for PH. What has been found, a lot of cures for other problems can help PH. sildenafil is often prescribed. In the UK, around 6,000-7,000 people have pulmonary hypertension. It's also thought that more remain undiagnosed.

    I have found Robitussin helps get the gunk up too. Along with huffing technique.

    As for the vitimins I would think that when you are fighting anything within the body you are using all sorts to help it fight whatever it needs to fight. I try to have at least one banana a day as it is a great source of potassium and if you budget can stretch to it a SAD lamp might help for those dark glumly days. My wife has SAD and it has been the best thing we have bought it has definitely put an extra spring in her step. It is also great for decorating ;)

    Be Well

  • Hi offcut, yes good comment. Would you be able to explain to me you said your wife is on SAD could you please explain what that is.

    Thanking you,

    Gallmoe.

  • sada.org.uk/

    nhs.uk/conditions/Seasonal-...

    Better explained in the links above. My wife has SAD and has always been a sun lover but in the winter dark nights it wears her down.

    Be Well

  • TequilahCat,

    I think it’s important indeed to get your vit D level up and this potassium. I had this in hospital. The potassium is easy to correct with the prescribed supplements. Vit D is great and really, after you have had the official supplement, I would take some Vit D3 (the one that our body manufactures) regularly. I don’t want to advertise, but I bought mine at Chemist Direct. But you can obtain it with Vit A and cod liver oil from Sainsbury’s. Just explore where you can find this for yourself.

    Are you doing any exercise? I recommend one for the lungs:

    Keep going. If you have any question, either ask us or phone the helpline for professional advice 03000 030 555 That’s the British Lung Foundation. Hope this helps, Mic

  • Thank you so much for your support and all your replies! The information has been such a great help & I cannot even begin to express my gratitude and appreciation! Getting to a point of understanding this illness is important for me; I have up to this time felt frightened and vulnerable. My diagnosis day was a complete shock to me as I lived a busy life with lots of energy and a robust attitude. It seemed like overnight everything had changed for not only me but also my family. It was devastating, to say the least.

    My doctors say that a PH patient over time makes great strides and gradually becomes stronger when the therapies work. It is the daily living that are yo-yo like. One day is good, then the next day is horrible. Because the day to day is rough going, I can't see the big picture of getting better. Well, I did have one really great day last week ....

    So, I am getting cardio in ... I have started walking for 10 minutes every night just last week. Last week I had my 6 minute walk test and all my lung & breathing tests. My walk test shows that I'm at 40% ... so I definitely need to get better at that. I know I can do some better on it, but I didn't want to push it and end up in a bad spot later that night. I haven't got my other test results back yet. One Specialist wants me to do cardio to 30 minutes per day and she is pretty adamant about that. I have been lifting 5lb weights for my arms for a little bit (12 rep each side) ... and I enjoy Yoga when i can get it in. The anxiety is rough to deal with. I thought that normal daily life anxiety was bad ... but this is anxiety now is off the chart!

    I began taking my Vit D and potassium supplements last night along with my daily vitamins ... I'm hoping that begins to help with my hypervenilating and galloping heart rate. I'll be propping up pillows tonight & try to get some sleep. I had no idea that the sleeplessness is something so many experience! I am used to sleeping at least 8 to 10 hours a night ... not I get 2 hours a night if I am lucky. My energy levels today were so low .. I had no motivation to do anything -- not like me at all!

    I had a Co2 / Sleep Study test last week and am still waiting for the results. I had no issues last night, so I'm hoping tonight is smooth sailing!! Some rest would be nice!! SOB is a horrible experience!

    I'll ask my pharmacist to review my records too. I had not even thought of this. I have my Sildanaifil and Trespostinal shipped from a specialty pharmacy and the rest are from a regular pharmacy. I'll find out tomorrow how to go about it.

    Today, the cold virus seems to be on its way out. Not to much need for coughing and I'll take some more Robitussin tonight ... I am not familiar with the huffing technique... Is there information about it I could read about it?

    I'm due to go in for another right-heart catheterization this month along with another MRI and additional tests. Because I've made progress, the doctors are more and more hopeful.

    A little bit of history -- My initial diagnosis was in September 2014 and by December 2014, I had been on trepostiol therapy for only 8 weeks after a Swan-Gantz Catheter; Because there was no change, the lead doctor suggested the possibility of contacting the transplant team. He informed me that my heart was very strong & just needed to lose the fluid around it. My lungs were not so great ... Then they began the Sildanafil treatment ... and then 6 weeks later there was the huge turn around with the loss of water around the heart. I was excited at that point. This has been a roller coaster ride and I'm only into it for now 6 months.

    I'm really loving this community here! So much support and so much acceptance!!

    I cannot say Thank You enough!!!!

    Cindy

  • HI and I cannot say anything that has not already been said. Thank you for sharing with us . Sharing is valuable.

  • Its been 5 days now and I've been taking the supplements, eating bananas and my potassium levels are up. Some of my discomforts are going down & my doctor is pleased ... ( ...I am relieved ...)

    The virus / cold I've been fighting is finally on it's way out & I hope the last of it will be gone by next week. Breathing is getting a bit easier ... It helps that my anxieties are easing off a bit also!!

    I have had no episodes of racing heart rate or such for about three days now, and I'm beginning to get some sleep - better than getting no sleep. The oxygen man just left and I'll be sleeping with 1% oxygen tonight --- Hoping it will help!!

  • Thank you Punkyb

    I've been on oxygen now for about 6 days ... The first night I slept really well although I had to adjust the levels down from the prescribed 2% to 1.5% ... The concentrator is loud but we put it in another room and close the door. My muscle aches subsided and my voice came back strong. After the first night or so, I began sleeping again 2 to 3 hours at a time, --- my oxygen levels are fine ... but my anxiety levels are high. I listen to my breathing and doesn't sound relaxed or smooth. It's likely because of nasal congestion ... which I really dislike ... I let it bother me too much. I struggle with getting comfortable over everything.

    The first couple nights on oxygen, I experienced a drying effect in my nasal areas, but it was a small trade off for resting easier and getting more sleep even if it was broken on and off. (It has still been more than I had been able to get in the last 6 months). After 2 days, I began to build congestion and excretions ... Blowing my nose more, coughing a lot but it has been tolerable as I don't use the oxygen a lot & is only for when I sleep. I'm taking Robitussin again to get rid of the congestion in my lungs and I'm missing laying flat to sleep. Now I am sleeping on an incline.

    My abdomen began swelling probably from fluid retention. It went down for a couple days, but I still need to get it checked out.

    I have another sleep study coming in to do Monday night at 1% oxygen for the doctor. Another Right Heart Cath at the end of March with a 6 minute walk test.

    Other than that, sometimes feeling frustrated with the medical red tape. I would like someone to just sit down and interpret a few test results from my Pulmonary Testing. I have asked for a nurse to come out for support and I'm still waiting to hear about that.

    I'm sure I'll get through .... it helps to know that I can just call or go in to the Pulmonary ER and be seen if I want & I might just do that - (or at the very least call one of the doctors) ... Overall, I'm feeling better than I did a week ago but still, ... what I would give to have my good life back again :)

  • I guess I missed your response until tonight. I am not real proficient on blogs but am trying to learn..

  • I had a reaction like that from taking Spiriva ... just saying.... What test did they do to discover pulmonary hypertension?

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