Tests & More Changes

No sleep last night - fatigued most of today. I started strong this morning but by noon I was finished by weakness.

I went to the eye doctors today. Good news -- there is no hypertension found in my eyes. The doctor believes that my blurred vision is a side effect of the tripostinol medication & that he is hopeful that in a few months, my vision will return to normal and the side effects will subside.

My overnight sleep study / Co2 tests came back and I am being put on oxygen for overnight sleeping only. I don't know how I feel about that. If it helps me get more sleep than the 2 hours at a time I have been getting, it will probably be a good change.

I have more tests coming up -- another right heart catheterization, an MRI and more Echocardiograms. I feel like the medical testing is so invasive but it is necessary.

My abdomen began swelling yesterday -- I thought maybe from water retention. So I called the doctor up and she wants to seem in clinic in 5 days. I began dropping weight from losing water all day yesterday and by late evening last night I had lost a little more than 1 pound in water weight.

I read that the medical community is realizing that Pulmonary Hypertension is more prevalent than they had ever thought and that is likely one of the most under-diagnosed illnesses. Hopefully, these discoveries will push research to be funded so that a cure can be found!

7 Replies

  • You are going through a bad time at the moment and I really feel for you. Lets hope one day we will be able to cure all diseases. x

  • Thank you Coughalot!

    Just got through first night on oxygen and had 6 hours sleep finally!

    Muscle aches have subsided but brain fog still creeps in ...

    I hope with continued use all will return to as normal as normal can be for right now ... better known as a 'new normal' ... hehe

    I pray for a cure everyday!


  • They put me on Water tablets straight away but It only made my kidneys hurt so I am off them now! You sure are having plenty of tests which is good. hope it all goes well for you.

    Be Well

  • I'm on water tablet too. I'm feeling a bit overwhelmed by the tests though.

    Trying to stay optimistic in the face of it all.

    Thank you for your well wishes Offcut :)

    Hope everything is better for you soon!!


  • I'm glad in a way of the result on your eye sight. Not fun though, poor you.

    I have blurred vision,but I think it's cataract. I will seeif it is so on 31 March.

    It's a difficult time for you. Can your doctor give you any help at home. Do you have a pulmonary nurse? Can you get referred to one?

    I do hope things get better soon for you. Mic

  • HI Mic,

    Yes, very true ... it is a difficult time. I believe I am reaching a point of self-sufficiency.

    I'm checking it out if I can get some help at home. I've got my pulmonary doctor & he has his colleagues and his Medical Practitioner who I see in clinic. They are all out of the University Medical Center here ... then I've had transitional nurses come in-home for the last several months and our health insurance is saying I've reached my quota. The University Medical Center has a 24 hours ER and a phone line I can call anytime ... they can be helpful ... or not ... depending on the situation and who it is that I land with speaking to. Most of my PH meds are routed through a specialty pharmacy. They have sent out their own nurse to monitor the IV and pump status and make sure all is going okay ... but she is no way a pulmonary nurse.

    There is a gap between having a pulmonary nurse though.

    I'm looking into if I can get referred with one and if insurance will cover it.

    I'm overdue for the eyeglass prescription for about 2 years now, and I've been on the medication steady at this current rate for about a month. So, it could be the medications, or more likely it is just normal changes.

    All this testing is rigorous. I would be glad when it slows down.

    Last night was my first night on Oxygen! I slept for about 6 hours & Today is the first day in 5 months that I have not had any muscle fatigue yet! I'm very glad about that. Previous, I had been sleeping only 2 hours at a time & would wake up with headaches, muscle fatigues and SOB / Racing heart complaints. Tonight I'm hoping I can sleep really good tonight and begin getting some good cardio work outs in by the end of this next week.

    Working on building a new normal, and getting better and better!!!


  • Yes, TEquilah, this is it. I'm glad you've got help. I'm looking forward to hear your progress with the cardio. This is vital. I cannot say that I am you, but in 2010 I was on oxygen at home and outside. so I went with my oxygen bottles to the gym.

    It did the trick, I was fortunate to be able to discard the ocxygen.

    I hope at least that youcan help yourself with cardio exercises.

    her's one that I think you can do at home.

    do them at your own pace. AND be full of hope. Life is for the living!

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