Tests & More Changes

[TequilahCat]

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!

[Hidden]

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

[TequilahCat in reply to Hidden]

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!

Cindy

[Offcut]

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

[TequilahCat in reply to Offcut]

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!!

Cindy

[helingmic]

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

[TequilahCat in reply to helingmic]

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!!!

Cindy

[helingmic in reply to TequilahCat]

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.

youtube.com/watch?v=iIrAUL_...(Not working as expected?)

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