Just thought I would provide an update 'cause I have been absent for some time.
Firstly, it is great to be back and secondly I hope everyone as is well as they can be or at peace with themselves. If not we are here to support as much as is possible.
Two years ago I was diagnosed with a mild to moderate heart murmur. Unfortunately, it became much worse over 2013 which means I have to have a bypass.
The fun began in November last year. I developed Cardiac Asthma (in Feurta Ventura) and was very ill. I also had bad fluid retention and very low iron necessitating another blood transfusion on return to England.
After my notes being lost, which caused considerable delays to my treatment, visits to A & E and doctors refusing to treat my low iron status I began to get more than a little annoyed. I sent an email to my cardiac consultant and she arranged for my hospital stay. However, I had to take being patronized on the chin.
In hospital one nurse nearly killed me. She refused to let me treat my own diabetes and I ended up feeling very ill. She actually snatched my insulin away from me and said something like - if any one treats your diabetes then it will be a nurse - so I ended up with very high blood glucose (had an infection and low iron) and burning ketones. Thank heavens I had hidden some insulin in my suitcase. I was able to bring my blood glucose back to normal. a very narrow escape. Still waiting to see the doctor she promised!
I was sent for a lung function test and after travelling to the other side of town in my dressing gown in an ambulance we found the office was shut and a sign said back Monday. Apparently, I should have been sent to hospital in another town. Then I had to have an oesophagogastroduodenoscopy or OGD. So much disorganization, I am still reeling. I was told the test would be on a particular date.
At this point I was still in hospital. I had no breakfast and worse no fluid. I waited patiently for the porters. Some six hours later I was told the procedure was not going to happen. The next day I was given another date this time the op did go ahead. No one told me the outcome and I felt more than a little puzzled. Eventually, I was told they needed to do some work down there. I looked at my feet but could not see any corns. Days passed and no sign of second procedure. Eventually, the cardiologist came to see me along with the surgeon and they said I would have to go home and appointments would be made. So I went home and waited.
Come the beginning of March I had a scan to check my colon and that went according to plan. I also had to go to another hospital for the lung function test which showed now airways disease as one doctor who interpreted the results logged. Now bear in mind that the severe aortic stenosis was cauaing serious problems with breathlessness, dizziness and fatigue One ambulance escort said that I looked able to walk and why should I have a wheelchair. I thought I was going to have a heart attack or stroke there and then as he forced me to walk up a hill to the lung function office.
Finally, another date for the OGD. I attended as requested and lay on my hospital bed (no food and worse no fluid). How I wanted a double Vodka. I lay there from 9.30 hours until 10.30 hours. a nurse came and told me that no doctor was available to administer the anaethsetic. About 11.30 hours I was told that a doctor was now available but the Argon machine was broken. Twelve noon another machine found but no doctor. I pleaded with the nurse to give me an exact time for the op or I would go home. She said it would be 13 hundred hours. Well, you guessed it, that hour came and went.
Finally a doctor arrived shouting at the top of his voice. I refuse to operate on her he shouted. She has severe aortic stenosis the anaethsetic could kill her. You can imagine I was severely pissed. I yelled come over here and talk to me. After all am supposedly the consumer in this arrangement. He was apologetic and explained the anaesthetic was not suitable and that I should have an enhanced procedure. The nurse eventually came over and gave me a drink. I had nothing to eat and or drink for 8 hours and I am insulin dependent diabetic. So home in a taxi.
Another very slow two weeks later a letter with a new date! I phoned and was assured this was for an enhanced procedure. Hospital transport booked and back to the hospital. On the ward I was again told I could not have the procedure because of the anaesthetic and that really I should not have any anaesthetic. Beggars the question why did they give me any way back during the first examination. With some trepidation I agreed to this. I was given throat spray by the gallon. the procedure was not too bad I felt the camera and being poked about in the gastric region but it was bearable and the staff were lovely. Very supportive!. I felt very cared for, what a difference.
The whole purpose of the top down, bottom up examinations was to see if there was any bleed that could be making the iron levels so low. A burst blood vessel was found and repaired.
I really thought it was all over and I could have the bypass. I saw the cardiac surgeon the last week in March. He said it should take place in about a fortnight.
Later that week I received a copy of the letter he sent to the cardiac consultant saying the op should be in a matter of weeks. Was he aware I would understand the contradiction?
I was called to the hospital (yet again) because cardiac registrar concerned my iron levels still low. GP had extremely reluctantly sent some Ferrous Fumerate round to he house. I was told there would be more delays whilst my iron levels improved. I was then invited to take part in the INITIATE study. This trial tests the validity of whether intravenous iron reduces the need for blood transfusion during bypass. I agreed to join and unfortunately was pooled to the group taking iron tablets. However, I was given instructions on maximising iron intake and met a very nice doctor and nurse. They promised I would not be lost in the system and contacted the rest of my cardio team to hurry my op date along.
End of March came and I went to see the surgeon again. He thought I was good to go and said definitely in another fortnight. I then went to see the cardiac pre-op nurse. She was nice but a tad brutal in her desire to give me a realistic picture of what would happen before, during and after the bypass. Later that day she sent me an email. In it she queried - guess what - my thyroid function. Said she would have to contact endocrine team. You see my blood test showed suppressed THS, no T4 and elevated FT3. Hardly surprising. I take T3 and the blood tests were sprung on me just after taking my morning dose. The nurse said it could be another 6 weeks until my op. What did she mean? Were they proposing to make me stop the T3 and start T4 again? No *@@* way. I was extremely frightened by her tone. I could die and no one gave a twopenny damn. I started to think I should refuse the op and stop this torture.
Well I got good and angry. Thank heavens for T3 it was keeping me in touch with my emotions. I sat down at the computer and wrote a stinking letter of complaint and sent it to the pre-op nurse, the cardiologist, the surgeon and my endocrinologist. I explained that all the way down the line I had told health care professionals that I was taking T3 and that I had been refused support by my GP. I also explained that I had regular FT3 tests. I really thought this would have been written in my notes. The surgeon was on holiday for a fortnight (so he lied about dates for op anyway). However, my endocrinologist did reply and an emergency appointment made.
I attended today and glory be he has agreed to manage me on T3. He even said I could have prescription T3 in smaller doses so I would not have to cut mine up. He told me that the ratio of T4 to T3 was 5:!. I said I had read two research papers that suggested 3:! but surely it was about how you felt. I am on 75mcgs per day with no irregular heart beat, high blood pressure or any other negative symptoms. i do feel more alive!!! He suggested I should reduce it during the bypass and I happily agreed to conply. He then wrote to the cardio team.
This is a very long post but a lot happened. Much of this experience has been horrible. I have lived through each day since last year thinking I had a time bomb in my chest. I have been pushed, prodded, pulled and patronised. Along the way I have met some incredibly lovely people and have been overwhelmed by their kindness. The hospital where I live is like a war zone. The staff wonder around looking shell shocked. It is a wonder that anything gets done. It is all about crisis responding and lives do get saved but the human element of care and compassion is dying.
I am still not sure when I will have my bypass, maybe a fortnight!!
Kindest of regards