#veletri

[lamentations44]

Over the last month I have had some of the absolute sickest Pulmonary hypertension patients I have ever taken care of in the last 9 years.

I am sad to report that neither of the patients survived their disease. One had sarcoid and was noncompliant with treatment (that would be the 140 PA pressures) and the other was completely mismanaged by physicians for over 10 years. Despite having a diagnosis of PH- she never received treatment or referral to our PH clinic. So she arrived with PA pressures higher than her systemic pressures and was to far gone to respond to treatment.

For both these patients- they were given the absolute best our certified PH center has to offer and yet that ugly disease had the last word.

***For those unfamiliar with PAP hemodynamics-

Your pulmonary artery pressures normally should be <25 systolic (15-20 usually). Remember your right heart is the low pressure system so you ideally would never see PA pressures higher than your systemic pressures.

PAP in yellow on our monitors, ABP in red.

[robertmarch82]

Back to the hospital tomorrow. 4th hospitalization this year. My legs are still swollen and it´s dangerous for my heart and it could end in heart failure. So I have to go to the hospital to get diuretics to veins, because apparently diuretics via pills stopped having the needed effect. 

So in my left arm is catheter with infusion pump and in my right arm will be catheter for diuretics. I am changing to robocop. I am interested, how will they measure my blood pressure. I am out of arms. 

[robertmarch82]

Returned from the hospital today. Per my PH specialist, I am intolerant to Veletri, because my health state is worse and worse, instead better, so he will ask my insurance company to approve Uptravi. Then I will be on Uptravi, Ambrisentan and Sildenafil. Now, I will be decreasing speed in the infusion pump to get off Veletri and on 17th December he will do RHC. I hope it won´t hurt so much like the first time :-( Insurance company has one month to decide on Uptravi.

[robertmarch82]

What I hate about Pulmonary arterial hypertension

1)    Stress during changing container with my medication. Will there be alarm? Did I do it right?

2)    Permanent exhaustion. It´s one of symptoms. I need a lot of, really lot of rest. And muscle fatigue.

3)    Showering is problem. I have to cover my catheter with plastic film to protect it from water. I have it attached in my left arm, so of course, I need help with it.

4)    Constantly carrying bag with machine, which is giving me every few minutes dosage of my medication through tube into my catheter. That tube has to be changed every three days. Of course, I need help with it. Again.

5)    Logically, that bag is with me 24/7, so during sleeping too. I am afraid every night, that bag will fall from bed and pull out my catheter from my arm. In that case, I would need to call ambulance immediately to avoid sepsis.

6)    I will never swim again in my life. I love water so much. It calmed me. I will never again lie in bath or be in the sea.

7)    I am forbidden to carry things heavier than 5 kilograms. I was always so proud on my strenght in my arms, so proud, that I can help my old mother. She is 71. She can´t carry heavy things.

8)    How to get on holiday? I need lot of medical supplies (syringes, 50 ml of solution of NaCl, needles, disinfectant, medication Veletri, tubes, containers, spare machine) plus clothes and hygienic things of course. I don´t think, that all of this is lighter than 5 kilograms. And I need to get in and from the train with it. And I can´t lift my left arm above my head. It´s forbidden too. I have no idea, how to get to my Fantasy festival, to which I am looking for whole year.

9)    I am allowed to drink only 1,5 l of fluid. It´s a really insufficient for me, but I can´t drink more, because more fluid would be dangerous for my heart. My heart wouldn´t be able to pump it. I take diuretics to avoid storing water in my body, mainly in my liver. I lost 11 kilograms during almost two weeks in the hospital. So much water in my body.

10)                       I have to be on low salt diet. Food has no taste.

11)                       I have to watch my weight. I mean it.

12)                       Palpitations and low blood pressure.

[vinishayemul-blog]

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[robertmarch82]

REVATIO

So I am on Revatio since this monday 17th December and I already feel better! No jaw pain, no diarrhea and nausea like with Veletri! 

The only side effects so far with Revation are big problems with sleeping and anxiety. I am like "on needles". Very nervous for no reason and I wake up like 15x per night. 

But I don´t suffocate anymore. I don´t wake up because of suffocation. I just can´t sleep and my pills for sleeping aren´t helping - I take 2x pills of Quetiapine.

[robertmarch82]

Hospitalization

Back home from the hospital. But lost only 4 kilograms of fluids. Furosemid straight to my veins, first infusion to my right arm held only for one day, then several attempts to get another infusion, led to my arm being now blue-green-purple from hematoms. So they had to create catheter in my neck. 

Doctor was so glad, that he can use old scars from catheterisation done in April, he used them as navigation to know, where to get tube to my body :-) Funny enough, on 17th December, I will have another catheterisation done at the same place! Yeah! So much fun! Catheter was badly covered, so nurses re-done it 6x times, therefore skin on my neck is now very very irritated. Try to have plaster get on and off for 6x times on the exact same place. Fantastic pain. 

Hospital was awful. I had to go to Ostrava instead of Olomouc and it was like prehistory versus 21st century. They restricted my food to low sodium diet of course, but no one was watching how much I drink and tea was re-filled twice a day. Logic? None. 

Legs aren´t so swollen and now I am still waiting for my insurance company to approve Uptravi, because Veletri (Flolan) isn´t working. Of course, Veletri is working for everyone except me. 7,5 months of wasted time on Veletri. And next Tuesday again to the hospital, to Olomouc, to change dressing of my catheter for infusion pump. 

For several days, 6 tubes were attached to my body. Not entertaining. And I had to go to toilet, to pee, to chair with a hole, so they can measure how much I pee.

And I had to get second infusion with potassium, because furosemid get potassium from my body out and hypokalemia is dangerous. 

[robertmarch82]

The speed of dosage of Veletri in infusion pump raised. Three days of hell began. I raised it at 9:20 am and already feel terrible. Three days, when the body is processing higher dosage and then at least two weeks when I really don´t feel well.