Saturday, 23 February 2013

Heart failure revisited!!

I have a distinct sense of dejavu going on as I sit here in bed at the general hospital where my bad luck seems to be continuing.

I went on leave last Saturday and finally got my hair done and then along with my parents we went to see Bens show throughout which I had a feeling that all was not well with him, my feelings were correct as he was not well and had thrown up mid show I took my brave soldier home and put him to bed. Sunday morning he said he felt a bit better and demolished fried eggs on toast and felt ok to go to work (filming a dance show) I decided to spend the day at my parents rather than on my own after I had met up with the girlies for a coffee in the morning. I had a fab time catching up with them and was a great start to my day.
After lunch mom and I went over to hobby craft but while there I began to feel unwell really sick and light headed we left and went back to my house to collect stuff to go back to unit after dinner that night, however when I got there I threw up and felt rotten and then continued throwing up till about 8.30pm.

In light of this the unit would not have me back until 72 hours from the last symptom and so I was stuck without any meal plan or portioning guidelines and in the whole time I didn't get a single phone call to enquire how I was or if I needed any help or support despite the fact I have been there for nearly six months and had only had one leave when main meals were involved and they were planed down to the spoon size. That aside I managed with much support from Ben and my parents to muddle through basing food round the things we new how to portion.

During this time my abdomen remained swollen and the weight I had initially lost taking the water tablets was going back on, I was finding it increasingly difficult to sleep again due to not been able to breath lying down and constantly coughing along with the pain that has now moved from the hip in to my back. I was so distressed that had I have been more selfish I would have topped myself as it was all too much to take.

In light of this Ben arranged for me to see the doctor from the unit in outpatients on Tuesday afternoon as Ben was not happy that nothing appeared to be being looked at and felt that I was just at a feeding farm without any physical or psychological help and support.

The doctor was good but didn't manage to allay my fears that my abdomen is going to return back to how it was and said he couldn't increase the water tablets without speaking to the medical team at the general as they were prescribed by a consultant, I stressed this needed to be done then as they were clearly not working. I was asked on the Wednesday to keep a record of urine input and output which was let's say interesting, weeing in to a jug!!!! He had also arranged for a ct scan to happen on Friday at 2pm to see what was happening in my heart and lungs as it would give a clearer picture than the X-ray and ultrasound.

I returned to the unit on Thursday morning after breakfast with much coercion from Ben as I really didn't see any point and it was already a really hard day for me as it was the three year anniversary of my nans death. As soon as I got there I saw the doctor who assured me he would contact the cardiologist and get some advice regarding medication. I waited all day and then the doctor said he had spoken to the secretary for the cardiologist who was unable to get me an earlier appointment than the one I have for April and so he had emailed him directly for advice. Unfortunately the advice was that I would need to be seen by the medical team for further scans and X-rays and the quickest way was to send me back to CDU to be assessed. So at 10.45pm on Thursday Ben and I were sat waiting in CDU for what was set to be a long night. My goodness it really was long Ben eventually left at about 6am when they let me sleep on a examination bed in a treatment room for an hour, next thing I new was breakfast and then back in to the waiting room for a further three hours. Finally at about 11.45am they had a bed for me on a ward.

I have a room on my own with an en-suite which is quite nice and has a good view. The unit sent staff over to be with me which was helpful when it came to lunch time as they really helped me through how much to eat.

I saw the cardiologist who said he was increasing the water tablets and would be looking to increase the heart meds next week along with introducing another one. He advised i would have further blood tests as well as the scan at 2pm. The heart failure nurse came to see me and went through a load of do's and dont's including decreasing my fluid intake while I have the oedema so it was good that a nurse from the unit was here to hear this info. They also said I would need to be weighed daily to keep an eye on weight gain or loss, not sure how I feel about this yet.

Ben came in about 4.30pm which was good. The unit agreed I didn't have to have staff with me constantly and that they would just arrange for people to be with me for main meals which is really all I need and meant that once I had eaten dinner Ben and I could enjoy the visit without an audience.

Unfortunately Ben and I had tickets to see a show tonight which I don't think I will be able to go to as it looks like I'm here for at least the weekend especially as the scan I was having at 2pm yesterday has still not actually happened yet. It's not ideal and I would much prefer to be at home on leave but I also can't go on like this I just want it all sorting so my abdomen can go back down, I can breath again and just get back on track with beating my eating disorder.

That aside however I may be leaving here in a police car at this rate because if the man who has been playing the same three songs since 6.50am this morning doesn't turn them off I will be killing him!!

Wednesday, 13 February 2013

True or false

Arghhh my head is all over the place I am so confused, angry, scared and frustrated. The hospital started me on heart medication and water tablets to get rid of the fluid round my lungs, abdomen and other oedema and advised that the rapid weight gain was more than likely due to the water retention. I was relieved on Monday to see that i lost just over a kilo and a half but was still really worried that my face and stomach remained swollen but was reassured by doctors that it would just take a while to go. Imagine my dismay this morning when I got on the scales and all I had lost was 0.2kg despite the fact that they have me on fluid balance and can tell me that more is coming out than is going in so fluid is leaving my body. I am now petrified that the weight remaining is actual weight gain despite not changing my diet since December and my stomach and face have just got this big! The worse thing is that no one knows and all I can do is wait but I am so stressed its untrue.

I feel like I'm in a complete limbo as while my weight remains a mystery I can't really move forward and so I am stuck just existing here day to day waiting scared of the complete unknown.

Good news however is that I have got leave at the weekend which I am both looking forward to and dreading at the same time. It will be the first time (apart from Christmas) that I will be out for two main meals and even though I have spent five months going on about all the things I really want to eat now it comes to planning meals I can't think of anything!!

Due to bens work commitments I will be eating at my parents rather than alone so have talked ideas through with them and I'm just hoping the dietician will be here today to go over portion sizes and obviously to discuss my weight.

I am finally getting my hair done on Saturday and then going to see ben in his show on the night. Sunday morning I am meeting the girls for coffee which I am really excited about as I have not seen them since Xmas and have missed them loads. My concern for all of the above is what people will think I look like as usual but especially now I am swollen and puffy especially the face.

Oh well fear or no fear what can I do except grit my teeth, feel the fear and do it anyway.

Wednesday, 6 February 2013

It's all gone a bit wrong!!

So lets see shall we what have I learned since my last blog? Falling and dislocating your hip is excruciatingly painful not just at the time but for much time after especially when you start trying to walk on crutches.

My body has a mind of its own somehow managing to allow me to put on over half a stone in a week and a half without changing my diet in any way (more weight than I managed to gain the entire time I was on bed rest).

Finally I have learned heart attacks can seemingly happen without all the histrionics that casualty and other such programmes would have you believe are involved and that seemingly harmless pains in the chest and a few palpitations are actually a heart attack!!

An explanation perhaps, following my fall my stomach swelled up and I put on as I said over half a stone something that both the dietician and doctor said could not possibly be "real" weight but must be caused by swelling from the fall and constipation. I am completely distressed by the weight gain and the size of my stomach and that no one seemed to really be able to explain why. I have been taking lactulose to ease the constipation and yet still my stomach remained swollen and the weight continued to go up. Finally on Friday, a week after the fall and me telling them of my swelling the doctor did a blood and urine test which found a high level of protein in the urine but not so much in the blood, having contacted the renal team for advice it was decided to repeat the tests and then liaise with them once the results were back. Friday night they should have been back and by Monday I had not heard a thing and had come to the end of my tether. Deciding I could no longer cope and the only way I could deal with the situation would be to go home not eat and loose the weight and wait till my stomach went down so I demanded to go home. Ben and my dad came over as I was so distressed and it was decided that I should stay the night and wait to see the doctor the next day and have some official leave put in place, dubiously I agreed but then spent all of Tuesday in a distressed state waiting for answers. Finally the doctor seemed to take me seriously and arranged for me to go to the general hospital on Wednesday for an ultrasound and X-ray of my abdomen, he also agreed for me to go home for the night and then return to the unit after my tests.

The ultrasound showed no reason for the swelling of my stomach much to my dismay but did however show that I had fluid round my lungs which would explain why I had been so wheezy despite having taken a weeks worth of antibiotics for a suspected chest infection. They proceeded to X-ray my abdomen but also my lungs after which I was told I needed to go to A&E to be seen, luckily the doctor from the unit had called and spoken to the consultant who had agreed for me to be seen in CDU in order for me to avoid a three hour wait. I saw the registrar who said that the fluid was not severe enough to warrant aspirating it for which I was so happy as the thought of a needle in between the ribs was not filling me with joy. He explained that it was due to the heart failure and that is why I had such bad edema but they would prescribe Water tablets and the ace inhibitors the cardiologist had prescribed. He did an ECG and some blood tests and said to wait round for the results which would be about two to three hours, I explained my situation and he allowed me to return to the unit to have dinner and then back to them which I did.
To cut short what was an exceptionally long day and night for my dad and I and then for Ben and my mom blood tests revealed that I had a particular raise in a protein that would indicate a trauma to the heart and so the test would need to be repeated after six hours which it was, just after 12.20pm they advised the level had gone up again which would indicate that I had had a heart attack and would need to stay in over night in order to be monitored and then see the cardiologist in the morning.

So here I am sat in the general waiting I have had all of about 30 minutes sleep and am now getting so anxious waiting for breakfast. Ben was amazing liaising with the unit to get me the correct size milk jug and cup to measure the cereal and made sure all the staff were aware of my situation he must have been to and from the unit about five times finally at around 3.30am in order to get me some bread as the hospital don't do toast as someone nearly set the ward on fire!!

I am hoping the cardiologist will come this morning and allow me to return to the unit and that the tablets will get rid of all the excess water and that my swollen stomach will go down and the weight come off back to it level prior to all this mess and I can continue working on my eating disorder to make sure my heart can get stronger so that neither me or my family have to go through the trauma of this ever again.