Constant Pulmonary Hypertension Wrist Slapping

I have to say since 2012, I have felt a little harassed about living with Pulmonary Hypertension. The disease itself has its good days and bad days and I know my physical limits. However, the legal requirement for the treatment I have (Ambrisentan 10 mg and Tadalafil 40mg) is a monthly liver function blood test and a three monthly full blood count. It sounds straightforward enough, doesn’t it?

I get monthly Healthcare At Home medication and blood kit deliveries. I take the kit to my GP, where the nurse or phlebotomist takes the blood, labels it and I post it off. A much required arrangement as I, like most Pulmonary Hypertension patients do not live locally to my Pulmonary Vascular Diseases Unit, where our condition is monitored and managed.

The problem is I have made more appointments and posted more boxes than I have results of liver function tests, in my file, since commencing treatment. Only a few months into this routine I received strongly worded letters from the lead pharmacist, whom I now despise on sight, alerting me to the fact no blood result had been noted for the month prior and it was a legal requirement to have monthly blood tests etc, despite the fact I was already making the effort to have blood drawn and posting it.

In fact over the last twelve months I have had my medications stopped once and had at least half a dozen ominously worded letters reminding me of my obligatory blood tests. I became immune to the letters and fed up of the somewhat empty gesture of even making an appointment to get blood drawn, which seemed a waste of time for everyone concerned. After all, these bloods seemed to be more about ticking boxes, than about my health and wellbeing, if they were prepared to stop my medications.

I don’t enjoy having blood drawn, (who does?) but I accept this as a term of the medication managing my pulmonary hypertension, I am not happy as a patient, that despite following the directions as requested of me, the system fails as many times as it works.

I was cautiously enthused when I received the new blood box user guide, noting that the patient identifiers required were slightly altered and we are now required to phone the pulmonary hypertension pharmacy team after posting the box back.

I have meticulously followed procedure this month and am hoping I get some idea of what happens to my blood after I have posted it and how many times the samples are adequate enough to conclude in legally required results being recorded in my file. I have even made the next blood test appointment for next month. I wait with great expectations of no longer getting the bug letters from the PH pharmacy team scolding me for breaking a promise, when I endure waiting rooms and drawing blood on such a regular basis.

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7 thoughts on “Constant Pulmonary Hypertension Wrist Slapping

  1. That sucks. It sounds like either their labeling system is faulty or the mail system is; if it were here I’d place bets on Canada Post. It would be rather interesting to find out if anyone else was having issues with not getting their results and being hassled. Good luck.

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    • I think the bloods “system” has been failing for a while and cannot imagine that others have not had a similar experience. The post here in the UK is nothing to shout about either. In my opinion, not enough thought went into the logistics of these legally required tests, they could have made things easier with pre-printed forms and postal tracking (it is the 21st century after all) but I’m just a patient, what would I know?!

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      • Lol, about as much as a machine operator where I work when we tell the supervisor or mechanic that something’s wrong :D. In other words, what you need to know in order to affect change, but not enough to put those changes into effect.

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    • Too right, Heather, in 3.5 years since diagnosis, I only missed sending blood a total of 6 times, most of those were because I had been to outpatient clinic at the hospital so there was no need for that month as they drew the blood themselves.

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  2. I am so sorry for not only your diagnosis but also for the stress it is putting you This stress is not good for PH I am a retired nurse and in the US we work as a team It sounds as if there is a communication breakdown between the doctor,the lab and the pharmacist Do you get the lab results sent to you? In the U.S. many patients can look up their own lab results and tests It certainly seems like there should be a simple solution to this problem. I will keep you in my prayers

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    • Thank you. Interesting point, no I don’t ever get my results of these LFTs, or quarterly FBCs, they were discussed once with me at an outpatient appointment when I was told they were fine, but I don’t ask either as in my mind these tests are legal more than medical and not actually anything to do with my pulmonary hypertension, when the blood actually gets through to be analysed in the lab any way.

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