Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Monday, August 19, 2013
My Left Kidney.
haha (the title's making me chuckle)
Hello Everyone,
Last week I had an appointment with my Urologist. I wish I had kept the letter because I wanted to know the exact dimensions of the stone that the CT showed up. Anyhow it seems to be at the bottom of my kidney which is blocking the flow of urine into my bladder. No wonder I've been getting so many UTI's the last few month (yay...NOT!)
He has booked me in for next Monday, he wants to just explore what's going on then decide if he needs to remove the stone if he thinks it's going to effect my kidney/bladder in the long run. I have my fingers & toes crossed that he will get it out!!
The stone is left over from the one that he removed last November. That stone was the biggest one I have ever had! I didn't want to see it as I have a pretty weak stomach for those kinds of things which most probably find strange due to all the operations I've had over the years. When he takes most stone out he "blast them out" and because they're shattered into so many tiny pieces it means you can leave bits behind. Over time (say months) if the stone hasn't come out on its own then it gets stuck and just grows and grows until bam! It needs to be removed. I have this procedure anywhere between every year up until 3 years. It always seems to be my left kidney in which this thing keeps recurring! Dr. Vaughn says that this kidney is hard to get to, not only is it smaller (everyone's is I believe) but the "tube" leading from the kidney to bladder is smaller and my kidney isn't in the "usual" spot which means it takes longer for him to find and get in there to blast the stone out.
When I was in my early teens I made a life changing decision to take over one part of my life. This meant no more help was needed from family or nurses. I don't exactly remember how we found out about this thing but all I know is that when Mum and I heard about it we (I) knew it was something I had to do to take control over my life, to be able to one day maybe live almost independently (which I do now). We researched what is know as an SPC. SPC stands for Supra Pubic Catheter. A SPC Catheter is a tube that goes into your bladder through your abdominal wall (at your pubic bone) which continuously drains urine from your bladder. It is held in place by an internal balloon that you cannot see. The catheter should be changed every 4-6 weeks. From day one my bladder has been unable to sustain this as i have so much "yucky" stuff in my bladder so mine is changed 2-3 weeks. I remember Mum and I made an appointment with a Dr (not Dr Vaughn) who did this procedure. He took one look at me and says something on the lines of "I don't recommend a SPC for a girl as young as yourself!". Then he turned to my mother and told he that "you're daughter could end up getting cancer because of the SPC". Now if you all knew my mum she is one tough lady... Not much makes her cry! When caring for someone with Spina Bifida I guess you have to be a little tough. Anyway as soon as this Dr said the word cancer I just looked over at mum (I was in shock) and I saw her cry! I don't think I've ever seen my mum cry before that day. It broke my heart that the one thing that I could do for myself could give me something so bad!!. Fast forward a few months and we had heard that there was a Urologist that had just started working at the Private hospital. He had moved from Melbourne and in my opinion it's the best thing he has ever done!! If it wasn't for him I don't think I would be living the life I have now. I know he won't read this but...
thank you Dr. Vaughan you have changed my life forever!!
There is not much information out there only from other people's experience. If you would like to know more please leave a comment & I shall try my hardest to answer you questions.
The catheter is something I have been wanting to talk about for a while but have not plucked up the courage (only close family know about it) to speak or write about. But in the end my book is about my life, not just all the good and things I want to share but things that are bad and things I keep close to my chest. If I'm only to write about my good experiences it will never be out there to help other's understand what I've been though or to help those with SB. Which is why I want to write my book in the first place.
I don't tell people about it because I am embarrassed and I don't want to be bullied or people to make fun of me.
But I hope you can now understand a little more about me.
Have a great day guys & keep your fingers crossed this kidney stone gets taken care of!
Amanda <3.
Monday, March 4, 2013
exciting news :)
Hello everyone,
I have the most exciting news someone with Lymphedema could possibly have!! After a long & tedious 2 year battle with a pressure sore on my left heel I am pleased to announce that...
It has finally healed.
The nurses & Dr's kept telling me that I was going to loose my foot/leg. I was so distrort. So for them to actually be happy with my progress it's fantastic.
have a great day/night all.
Amanda <3
Friday, September 28, 2012
lymphedema.
Is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system.
Tissues with lymphedema are at risk of infection.
Lymphedema affects approximately 140 million people worldwide
Lymphedema may be inherited (primary) or caused by injury to the lymphatic vessels (secondary). It is most frequently seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment of cancer, most notably breast cancer.
associated with accidents or certain diseases or problems that may inhibit the lymphatic system from functioning properly.
The diagnosis or early detection of lymphedema is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". These may be symptomatic of early stage of lymphoedema where accumulation of lymph is mild and not detectable by any difference in arm volume or circumference.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment
Treatment for lymphedema varies depending on the severity of the edema and the degree of fibrosis of the affected limb. Most people with lymphedema follow a daily regimen of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging. Complex decongestive physiotherapy is an empiric system of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Compression
[edit]Garments
Elastic compression garments are worn by persons with lymphedema on the affected limb following complete decongestive therapy to maintain edema reduction. Depending on the therapist's discretion, a compression garment may be custom-fit or purchased in over-the-counter, standard sizes. Compression garments are meant to be worn every day to maintain edema reduction and must be replaced on a regular basis. Support garments may be the only Garment of Choice for patients with Scrotal edema.
[edit]Bandaging or wrapping
Compression bandaging, also called wrapping, is the application of several layers of padding and short-stretch bandages to the involved areas. Short-stretch bandages are preferred over long-stretch bandages (such as those normally used to treat sprains), as the long-stretch bandages cannot produce the proper therapeutic tension necessary to safely reduce lymphedema and may in fact end up producing a tourniquet effect. During activity, whether exercise or daily activities, the short-stretch bandages enhance the pumping action of the lymph vessels by providing increased resistance for them to push against. This encourages lymphatic flow and helps to soften fluid-swollen areas.
[edit]Sequential gradient pump therapy
Compression pump technology utilizes a multi-chambered pneumatic sleeve with overlapping cells to promote movement of lymph fluid. Pump therapy may be used in addition to other treatments such as compression bandaging and manual lymph drainage. In many cases, pump therapy may help soften fibrotic tissue and therefore potentially enable more efficient lymphatic drainage. Sequential pump therapy may also be used as a home treatment method, usually as part of a regimen also involving compression garments or wrapping.
A Stanford University medical study showed that patients receiving the combined modalities of MLD/CDT and pneumatic pumping had a greater overall reduction in limb volume than patients receiving only MLD/CDT.[14] However, some therapists have begun to raise concern that compression pumps can cause genital swelling when used on persons with leg lymphedema.
Surgical treatments for lymphedema
Several effective surgical procedures exist to provide long-term solutions for patients who suffer from lymphedema. Prior to any lymphedema surgery, patients typically have been treated by a physical therapist trained in providing lymphedema treatment for initial conservative treatment of their lymphedema. Complete decompression therapy (CDT), manual lymphatic drainage (MLD) and compression bandaging are all helpful components of conservative lymphedema treatment.
Lymphatic vessel grafting
With the possibilities of advanced microsurgical techniques lymphvessel can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The technique is mostly used in armedemas after treatment of mammary carcinomas and in unilateral edemas of lower extremities after resection of lymphnodes and radiation. The method was developed experimentally at the Institute of Experimental Surgery, the Ludwig Maximilians University (LMU) in Munich. It was introduced as treatment in 1980 by Prof. Ruediger Baumeister[16].
The method is proved to be effective[17]. Follow up studies showed significant reduction of volume of the extremities even 10 years after surgery[18].
The patients, who had been previously treated with both MLD and compression therapy, gained significant improvements in quality of life after being treated with lymphatic vessel grafting[19]. Lymphoscintigraphic investigations at the Clinic of Nuclear Medicine at LMU showed a lasting enhancement of lymphatic transport after grafting[20].
The patency of lymphatic grafts have been demonstrated by the Institute for Clinical Radiology after more than 12 years, using indirect lymphography and MRI lymphography.
Tissues with lymphedema are at risk of infection.
Lymphedema affects approximately 140 million people worldwide
Lymphedema may be inherited (primary) or caused by injury to the lymphatic vessels (secondary). It is most frequently seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment of cancer, most notably breast cancer.
associated with accidents or certain diseases or problems that may inhibit the lymphatic system from functioning properly.
The diagnosis or early detection of lymphedema is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". These may be symptomatic of early stage of lymphoedema where accumulation of lymph is mild and not detectable by any difference in arm volume or circumference.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment
Treatment for lymphedema varies depending on the severity of the edema and the degree of fibrosis of the affected limb. Most people with lymphedema follow a daily regimen of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging. Complex decongestive physiotherapy is an empiric system of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Compression
[edit]Garments
Elastic compression garments are worn by persons with lymphedema on the affected limb following complete decongestive therapy to maintain edema reduction. Depending on the therapist's discretion, a compression garment may be custom-fit or purchased in over-the-counter, standard sizes. Compression garments are meant to be worn every day to maintain edema reduction and must be replaced on a regular basis. Support garments may be the only Garment of Choice for patients with Scrotal edema.
[edit]Bandaging or wrapping
Compression bandaging, also called wrapping, is the application of several layers of padding and short-stretch bandages to the involved areas. Short-stretch bandages are preferred over long-stretch bandages (such as those normally used to treat sprains), as the long-stretch bandages cannot produce the proper therapeutic tension necessary to safely reduce lymphedema and may in fact end up producing a tourniquet effect. During activity, whether exercise or daily activities, the short-stretch bandages enhance the pumping action of the lymph vessels by providing increased resistance for them to push against. This encourages lymphatic flow and helps to soften fluid-swollen areas.
[edit]Sequential gradient pump therapy
Compression pump technology utilizes a multi-chambered pneumatic sleeve with overlapping cells to promote movement of lymph fluid. Pump therapy may be used in addition to other treatments such as compression bandaging and manual lymph drainage. In many cases, pump therapy may help soften fibrotic tissue and therefore potentially enable more efficient lymphatic drainage. Sequential pump therapy may also be used as a home treatment method, usually as part of a regimen also involving compression garments or wrapping.
A Stanford University medical study showed that patients receiving the combined modalities of MLD/CDT and pneumatic pumping had a greater overall reduction in limb volume than patients receiving only MLD/CDT.[14] However, some therapists have begun to raise concern that compression pumps can cause genital swelling when used on persons with leg lymphedema.
Surgical treatments for lymphedema
Several effective surgical procedures exist to provide long-term solutions for patients who suffer from lymphedema. Prior to any lymphedema surgery, patients typically have been treated by a physical therapist trained in providing lymphedema treatment for initial conservative treatment of their lymphedema. Complete decompression therapy (CDT), manual lymphatic drainage (MLD) and compression bandaging are all helpful components of conservative lymphedema treatment.
Lymphatic vessel grafting
With the possibilities of advanced microsurgical techniques lymphvessel can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The technique is mostly used in armedemas after treatment of mammary carcinomas and in unilateral edemas of lower extremities after resection of lymphnodes and radiation. The method was developed experimentally at the Institute of Experimental Surgery, the Ludwig Maximilians University (LMU) in Munich. It was introduced as treatment in 1980 by Prof. Ruediger Baumeister[16].
The method is proved to be effective[17]. Follow up studies showed significant reduction of volume of the extremities even 10 years after surgery[18].
The patients, who had been previously treated with both MLD and compression therapy, gained significant improvements in quality of life after being treated with lymphatic vessel grafting[19]. Lymphoscintigraphic investigations at the Clinic of Nuclear Medicine at LMU showed a lasting enhancement of lymphatic transport after grafting[20].
The patency of lymphatic grafts have been demonstrated by the Institute for Clinical Radiology after more than 12 years, using indirect lymphography and MRI lymphography.
Friday, August 24, 2012
over night hospital visit.
Hello Everyone,
This time it's not for me, I bet your thinking due my last post that it would have to be Hailee in well guess again!
Yep that's right it was for....the husband!. He has been fine ALL day up until 9pm when he first complained of back pain, he went to bed and within 15 minutes came back out to the lounge. He was fully dressed and was clutching his left side. He asked me to ring my mum to come and get Hailee as he needed to go to hospital because he thought he may have appendicitis (your appendices is on the right so I knew it wouldn't be that) he was white as a ghost and started throwing up.
I rang my mum. She told me she was coming and that my Uncle would drive Steve to the hospital. I packed Hailee a bag and waited for them. She came in and said he should have got an ambulance but he didn't want one plus I wanted to go with him and I knew they wouldn't help me in. My Uncle pulled up outside the house, Steve got in and he speed away. I was SO pissed!! I hated seeing him in so much pain and I knew if I stayed home I wouldn't have got any sleep. So mum decided to drive me up to hospital. She couldn't really find a good park so she she parked in the ambo section. I nearly died haha, I'm surprised she didn't get a fine.
I "ran" inside. No one is in the waiting room which is a good sign. Meaning he didn't have to sit there long and was already in a cubical and most likely seen by a doctor... thank god!. I waited outside for a few minutes then a nurse finally let me in. I pretty much ran to Steve's side. My Uncle who was still with him said, "looks like a kidney stone". I saw he was hooked up to morphine, the pain was so bad, I just could see it in his eyes... I wish I could have taken it away.
The nurse asked me a few questions and I mentioned my urologist's name and said that they needed someone to call him and only him (thank good ness he was on rotation) The nurse gave him something else to help with the pain because the morphine just wasn't cutting it (sad face). Pretty much as that hit his veins he was out like a light! coming to it every so often.
My Uncle is still with us (it's now 1am) I told him to go home as I knew he had to work early the next morning. I said if we were sent home we would be ok to find our own way. 10 minutes later the pain started again, doctor came in and said he would be having a CT in the morning. So we weren't going anywhere!!. my Uncle left (with hesitation).
Steve was just moved to a bigger room for the night, which luckily had a bigger/softer more comfy bed (it's now 2.05am). He can now get the rest he needs! As for me I am tired so I shall close my eyes for a little while.
I opened my eyes and looked at my phone, it was 3.30am. Steve hadn't complained about the pain until he woke just after me.
Strange to say but time seems to go so quick when you're in hospital. I think/say that every time I'm a patient but honestly even being a loved one of said patient time goes quick! Hmm I wonder why that is?.
It's now 6.30am both of us have had a rough night. Yes I spent the night in ER with him, sleeping every hour for aprox 20-30 minutes in my wheelchair (it was pretty comfy). The night nurse came in to check on us and said to me that she had ordered me breakfast... that's so nice of her! Poor Steve can't have any though. He says he isn't hungry at the moment but is thirsty, so I had been giving him ice all night. We are hoping to be on top of the list for the CT scan this morning, well it didn't pan out that way!.
Fast forward a few days.....
It's now Friday and he has only been home for a just over 24 hours. The doctor was hoping that Steve could "pass" the stone on his own but decided that due to him not getting any better he would be operated on the next morning! BEST NEWS I'VE HEARD ALL WEEK!!! I got a phone call from the urologist at 5.30pm Wednesday night to say he had just come out of surgery.
Both Hailee and I are SO glad to have him home, he is still not 100% but defiantly on the mend.
Night all <3
This time it's not for me, I bet your thinking due my last post that it would have to be Hailee in well guess again!
Yep that's right it was for....the husband!. He has been fine ALL day up until 9pm when he first complained of back pain, he went to bed and within 15 minutes came back out to the lounge. He was fully dressed and was clutching his left side. He asked me to ring my mum to come and get Hailee as he needed to go to hospital because he thought he may have appendicitis (your appendices is on the right so I knew it wouldn't be that) he was white as a ghost and started throwing up.
I rang my mum. She told me she was coming and that my Uncle would drive Steve to the hospital. I packed Hailee a bag and waited for them. She came in and said he should have got an ambulance but he didn't want one plus I wanted to go with him and I knew they wouldn't help me in. My Uncle pulled up outside the house, Steve got in and he speed away. I was SO pissed!! I hated seeing him in so much pain and I knew if I stayed home I wouldn't have got any sleep. So mum decided to drive me up to hospital. She couldn't really find a good park so she she parked in the ambo section. I nearly died haha, I'm surprised she didn't get a fine.
I "ran" inside. No one is in the waiting room which is a good sign. Meaning he didn't have to sit there long and was already in a cubical and most likely seen by a doctor... thank god!. I waited outside for a few minutes then a nurse finally let me in. I pretty much ran to Steve's side. My Uncle who was still with him said, "looks like a kidney stone". I saw he was hooked up to morphine, the pain was so bad, I just could see it in his eyes... I wish I could have taken it away.
The nurse asked me a few questions and I mentioned my urologist's name and said that they needed someone to call him and only him (thank good ness he was on rotation) The nurse gave him something else to help with the pain because the morphine just wasn't cutting it (sad face). Pretty much as that hit his veins he was out like a light! coming to it every so often.
My Uncle is still with us (it's now 1am) I told him to go home as I knew he had to work early the next morning. I said if we were sent home we would be ok to find our own way. 10 minutes later the pain started again, doctor came in and said he would be having a CT in the morning. So we weren't going anywhere!!. my Uncle left (with hesitation).
Steve was just moved to a bigger room for the night, which luckily had a bigger/softer more comfy bed (it's now 2.05am). He can now get the rest he needs! As for me I am tired so I shall close my eyes for a little while.
I opened my eyes and looked at my phone, it was 3.30am. Steve hadn't complained about the pain until he woke just after me.
Strange to say but time seems to go so quick when you're in hospital. I think/say that every time I'm a patient but honestly even being a loved one of said patient time goes quick! Hmm I wonder why that is?.
It's now 6.30am both of us have had a rough night. Yes I spent the night in ER with him, sleeping every hour for aprox 20-30 minutes in my wheelchair (it was pretty comfy). The night nurse came in to check on us and said to me that she had ordered me breakfast... that's so nice of her! Poor Steve can't have any though. He says he isn't hungry at the moment but is thirsty, so I had been giving him ice all night. We are hoping to be on top of the list for the CT scan this morning, well it didn't pan out that way!.
Fast forward a few days.....
It's now Friday and he has only been home for a just over 24 hours. The doctor was hoping that Steve could "pass" the stone on his own but decided that due to him not getting any better he would be operated on the next morning! BEST NEWS I'VE HEARD ALL WEEK!!! I got a phone call from the urologist at 5.30pm Wednesday night to say he had just come out of surgery.
Both Hailee and I are SO glad to have him home, he is still not 100% but defiantly on the mend.
Night all <3
Tuesday, July 3, 2012
OUCHIES...I'VE HURT MY KNEE :( [act.1]
It was a normal night in our household we had just finished dinner, Steve was drying Hailee off from her shower when I decided I wanted to get changed into something warmer.
It was Wednesday night around 7pm [27th]. I was getting changed on my bed, rolled over on to my stomach and heard the loud POP!! I also felt this sharp pain radiate down my right leg. I instantly knew that I was in trouble. Hubby was in the ensuit and said he heard it too.
I sat up in my chair went and watched t.v for the next three hours it never hurt. What? I can't understand why..what's going on (I thought I may have "popped" it back into place when I sat in my chair. BUT as soon as I crawled into bed and lay down I knew everything was WRONG!. I cried on and off.
Had some panadol to try get some sleep and tried to convince Steve not to go to work because I needed to go to hospital straight away. Thursday morning I woke u, I couldn't get out of bed so luckily my Mum was here to pick miss Hailee up to take her to daycare(she does every week...thanks Mum).
As soon as she left I rang Steve at work and begged him once again to come home. He came home 2 hours later. I was feeling ok in the car, until I got the the hospital when I just wanted to throw up like I had been doing the night before.
You can read the rest on Thursday...hehe sorry guys it's late and I'm tired.
Night!!
Amanda <3
Sunday, February 5, 2012
I'm back!!!!
Hello Everyone.
Wow I can't believe how long it's been since I last blogged. I do apologize!!.
Alot has happened in the last few months since my fingers last touched this keyboard (oh how I have missed you). First off I am feeling much better after the "problems" I had back at the end of Nov. Yay!. We this was our first christmas with out Nan.... it was hard but we survived.
On boxing day Hailee, Steve and I moved out of my parents place and into our own rental. It's the most gorgeous house (only 3 years old) so everything is very new and modern, the most important thing.. well there are 2. 1) The place is wheelchair accessable! & 2) It only takes Hailee and I 5 minutes to walk over to road to mum's work and to the supermarket.. score right?!. The first week felt quite strange because it just didnt feel like "our home" but now it feels like we've always lived here.
Time seems like it has sped up, it honestly doesnt feel like it's been 4 months since Nan has gone. Honestly it's quite hard to step foot in Lorraine (My Auntie)and her home. As to date we have only been there 3 times. The first was to clean out her waredrope. Wow, doing something like that is so surreal!!. I never thought I would do anything like that in my life.. especially for that woman.
It's strange it doesn't feel like she has gone, I was talking to Steve the other day about it, how I imagined I would cry non stop for months but honestly I have hardly cried at all. I think it's because we have not picked up her ashes and scattered them yet (If i got a say I wouldn't want to scatter them.. I want them here with me). But I am just a grandchild, I am not her child.
Ok let's move on.
It's my birthday in a few days. I'm looking forward to finally turning 25! (yep I'm a spring chicken) all my life I wanted to be 25, people seem to respect those around them at that age, it's like your not a child but you not a oldies(hehe). I'm also not looking forward to it because I never imagined being 25 without my grandmother. It's funny how you see a person that you love more then life it's self living forever. Unfortunatly it's not true :( Another thing I've come to realize, grief is a very funny thing and is different for everyone.
Ok well that's it in a nutshell & it's time for me to catch up on everyone elses blogs. Bye!
Oh, one last note. Hailee is growing up to be a real little miss, I don't mean she has an attatude(which does come out somedays.. oh god help me when we come to the teen years lol). But I mean she has grown up so much in the last few months, she's talking better, she's taller and just really seems to know who she is and what she wants chringes.
Amanda <3
Wow I can't believe how long it's been since I last blogged. I do apologize!!.
Alot has happened in the last few months since my fingers last touched this keyboard (oh how I have missed you). First off I am feeling much better after the "problems" I had back at the end of Nov. Yay!. We this was our first christmas with out Nan.... it was hard but we survived.
On boxing day Hailee, Steve and I moved out of my parents place and into our own rental. It's the most gorgeous house (only 3 years old) so everything is very new and modern, the most important thing.. well there are 2. 1) The place is wheelchair accessable! & 2) It only takes Hailee and I 5 minutes to walk over to road to mum's work and to the supermarket.. score right?!. The first week felt quite strange because it just didnt feel like "our home" but now it feels like we've always lived here.
Time seems like it has sped up, it honestly doesnt feel like it's been 4 months since Nan has gone. Honestly it's quite hard to step foot in Lorraine (My Auntie)and her home. As to date we have only been there 3 times. The first was to clean out her waredrope. Wow, doing something like that is so surreal!!. I never thought I would do anything like that in my life.. especially for that woman.
It's strange it doesn't feel like she has gone, I was talking to Steve the other day about it, how I imagined I would cry non stop for months but honestly I have hardly cried at all. I think it's because we have not picked up her ashes and scattered them yet (If i got a say I wouldn't want to scatter them.. I want them here with me). But I am just a grandchild, I am not her child.
Ok let's move on.
It's my birthday in a few days. I'm looking forward to finally turning 25! (yep I'm a spring chicken) all my life I wanted to be 25, people seem to respect those around them at that age, it's like your not a child but you not a oldies(hehe). I'm also not looking forward to it because I never imagined being 25 without my grandmother. It's funny how you see a person that you love more then life it's self living forever. Unfortunatly it's not true :( Another thing I've come to realize, grief is a very funny thing and is different for everyone.
Ok well that's it in a nutshell & it's time for me to catch up on everyone elses blogs. Bye!
Oh, one last note. Hailee is growing up to be a real little miss, I don't mean she has an attatude(which does come out somedays.. oh god help me when we come to the teen years lol). But I mean she has grown up so much in the last few months, she's talking better, she's taller and just really seems to know who she is and what she wants chringes.
Amanda <3
Thursday, November 24, 2011
I'm out but not myself
Hello Everyone,
I'm out of hospital (I have been for almost a week). Though I am out I'm not myself :(
I felt fine in there.
I came home took my pills/ felt worse than ever.
I went to my GP to change them.
That was 2 days ago.
These new ones haven't kicked in yet.
I just want to be back to 100%.
I hate feeling like this!.
I guess my body is trying to tell me it's time to slow down.
To slow down after the horrid month I had last month.
Ok time to lay down and get some rest...blog again soon.
<3
I'm out of hospital (I have been for almost a week). Though I am out I'm not myself :(
I felt fine in there.
I came home took my pills/ felt worse than ever.
I went to my GP to change them.
That was 2 days ago.
These new ones haven't kicked in yet.
I just want to be back to 100%.
I hate feeling like this!.
I guess my body is trying to tell me it's time to slow down.
To slow down after the horrid month I had last month.
Ok time to lay down and get some rest...blog again soon.
<3
Thursday, November 17, 2011
as I sit here
Hello Everyone,
... I am typing to you from a hospital bed (sigh). I know, I know I've been a naughty girl and not helped my body fight a UTI. This past weekend, starting on Friday afternoon I was getting these horrible sharp pain all over my body. I just sat in my chair and cried.
'how could I let this happen again?'
How could I let my kidney shut down AGAIN!. I was so angry I just wanted to scream, but thought I keep quiet for there are others in the house. I waited till hubby got home and asked him to put me onto the couch, so he did just that. He could see in my eyes something was wrong, but I could hardly speak, I couldn't lift my head nor my finger. After he rubbed my back (which I don't let him do cause it hurts me) I lay back down and went to sleep.
Saturday morning came and even though the back pain had subsided I felt quite sick. He asked me I wanted to go to hospital & I replied with "NO WAY!". I was trying to get myself better as today was his birthday and I had planned a small surprise party for him (some friends were coming out for a drink). As I was so unwell I asked him to put on Facebook "I am unwell, party is cancelled sorry guys". After that the weight of 'having to get better quick smart' was lifted from my shoulders.
Sunday came around just as slow as the hours ticked by. I felt much better I even sat in my chair. My mum took Hailee (thanks mum!!) for the day so I could rest in piece and quiet. I had waves of feeling brilliant and waves of wanting to die, the nausea was worse cause I hadn't eating since Friday. Hailee come home with paint on her lips and tip of her nose...she had so much fun. I'm glad.
Which brings me to Monday I wasn't looking forward; a friend brought her new baby boy down..wow he's a big!. It was really nice to see them again and it made me feel like normal for just a little bit. She bought down lunch as she usually does, boy it looked good but I wasn't going to try eat a chicken roll after not eating for 3 days. They left and I went to the doctor to see what he'd say. "Amanda" he said, "you've got a UTI. That was fine nothing a little pill won't fix. I was sent home to rest.
Hubby took the next day off, I had an appointment in the hospital and was unsure if I could move in and out of the car (mum was supposed to take me), I got into the doctors showed them my pressure saw (il write about those later) you all should have seen the look on Steve's face, it's like he'd seen a ghost. I asked what was wrong they showed me my leg which had turned fire engine RED! (can't think of name right now). They told me I'd need IV fluids and antibiotics to get rid of it. Steve wheeled me down to Emergency and after 5 minutes I had blood taken and a IV line in. Whisked off to a ward and that's where I've been.
I hate these places with a passion I really do but I know I have to stay here till my fire engine RED leg goes back to it's normal color.
... I am typing to you from a hospital bed (sigh). I know, I know I've been a naughty girl and not helped my body fight a UTI. This past weekend, starting on Friday afternoon I was getting these horrible sharp pain all over my body. I just sat in my chair and cried.
'how could I let this happen again?'
How could I let my kidney shut down AGAIN!. I was so angry I just wanted to scream, but thought I keep quiet for there are others in the house. I waited till hubby got home and asked him to put me onto the couch, so he did just that. He could see in my eyes something was wrong, but I could hardly speak, I couldn't lift my head nor my finger. After he rubbed my back (which I don't let him do cause it hurts me) I lay back down and went to sleep.
Saturday morning came and even though the back pain had subsided I felt quite sick. He asked me I wanted to go to hospital & I replied with "NO WAY!". I was trying to get myself better as today was his birthday and I had planned a small surprise party for him (some friends were coming out for a drink). As I was so unwell I asked him to put on Facebook "I am unwell, party is cancelled sorry guys". After that the weight of 'having to get better quick smart' was lifted from my shoulders.
Sunday came around just as slow as the hours ticked by. I felt much better I even sat in my chair. My mum took Hailee (thanks mum!!) for the day so I could rest in piece and quiet. I had waves of feeling brilliant and waves of wanting to die, the nausea was worse cause I hadn't eating since Friday. Hailee come home with paint on her lips and tip of her nose...she had so much fun. I'm glad.
Which brings me to Monday I wasn't looking forward; a friend brought her new baby boy down..wow he's a big!. It was really nice to see them again and it made me feel like normal for just a little bit. She bought down lunch as she usually does, boy it looked good but I wasn't going to try eat a chicken roll after not eating for 3 days. They left and I went to the doctor to see what he'd say. "Amanda" he said, "you've got a UTI. That was fine nothing a little pill won't fix. I was sent home to rest.
Hubby took the next day off, I had an appointment in the hospital and was unsure if I could move in and out of the car (mum was supposed to take me), I got into the doctors showed them my pressure saw (il write about those later) you all should have seen the look on Steve's face, it's like he'd seen a ghost. I asked what was wrong they showed me my leg which had turned fire engine RED! (can't think of name right now). They told me I'd need IV fluids and antibiotics to get rid of it. Steve wheeled me down to Emergency and after 5 minutes I had blood taken and a IV line in. Whisked off to a ward and that's where I've been.
I hate these places with a passion I really do but I know I have to stay here till my fire engine RED leg goes back to it's normal color.
Wednesday, September 28, 2011
Memoirs #2
Hello Everyone.
MY TEENAGE YEARS: (13-16)
(need to edit with things that happen between ages 13-15)
In Jan 2003, just before my 16th birthday. I went into the hospital here in Tassie to have surgery on my bowel. But unfortunately the operation had to be reversed due to me almost dying from Peritonitis... [http://en.m.wikipedia.org/wiki/Peritonitis]
That was one of the worst experiences of my life! I remember as a teenager a doctor told me I would never be able to live indipendantly or even have children. At that time I didn't even really care because I'd never had a boyfriend. As I grew up and my friends started dating I used to lay in bed and imagine if my life was different (not born with SB) would I be dating?, would I be able to move out of home? get married? travel the world? settle down and have a family of my own?.
Ahh it's incredible what the mind can dream up huh.
(read on to Memoirs #3 to find out what happens next in my life....)
MY TEENAGE YEARS: (13-16)
(need to edit with things that happen between ages 13-15)
In Jan 2003, just before my 16th birthday. I went into the hospital here in Tassie to have surgery on my bowel. But unfortunately the operation had to be reversed due to me almost dying from Peritonitis... [http://en.m.wikipedia.org/wiki/Peritonitis]
That was one of the worst experiences of my life! I remember as a teenager a doctor told me I would never be able to live indipendantly or even have children. At that time I didn't even really care because I'd never had a boyfriend. As I grew up and my friends started dating I used to lay in bed and imagine if my life was different (not born with SB) would I be dating?, would I be able to move out of home? get married? travel the world? settle down and have a family of my own?.
Ahh it's incredible what the mind can dream up huh.
(read on to Memoirs #3 to find out what happens next in my life....)
Thursday, June 10, 2010
what is Spina Bifida
Spina Bifida is a developemental birth defect caused by an incomplete closure of embryonic neural tube. I have whats called Spina Bifida Myelomeningocele which is the worst of all 4 forms of SB, which leads to most people having a disability, like myself.
Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].
The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.
Signs and symptoms:
Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.
Pathophysiology:
Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.
It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.
Please see a doctor before taking these supplements though.
Prevention:
There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.
Screening During Pregnancy:
Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.
Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].
The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.
Signs and symptoms:
Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.
Pathophysiology:
Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.
It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.
Please see a doctor before taking these supplements though.
Prevention:
There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.
Screening During Pregnancy:
Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.
Wednesday, May 13, 2009
Hailee's Birth Story!
Hello Everyone.
It was Saturday 1st November and my mum came around to see how I was feeling, I was 28 weeks and 6 days into my pregnancy. My whole pregnancy I was sick and diagnosed with Hyperemisis Gravadarum (HG) and that day was no different!. But as I was feeling a little better during so I decided I was going to finally pack my hospital bag. Though I was scheduled to have a c-section (for medical reasons) at 35 weeks.
I had no idea what was in store for me in the next 24 hours!!. The next morning Steve (my hubby) and I were about to head to a family BBQ. Unfortunately when I got up I found that we were going to have to spot at the hospital.
At the hospital Pregnancy clinic they checked me and said that the babies head was crowning and there was no was I could have a c-section now, I had to have her naturally. Because I was still early in my pregnancy they had to get a few nurses from NICU in there asap, the NICU professor even came in.
After 20 minutes of pushing, nothing was happening so they decided they would have to find another way to help her out. 3 hours after first coming into the hospital Hailee was born! Steve rang my mum and told her, it was lucky mum was still at the family BBQ so everyone found out at once.
I didn't get to meet my little girl until a few hours later. But she was the most gorgeous, precious Little thing in the whole world!. I feel in love straight away.
Hailee Nicole R.
2nd November
1.2 kg (2.2 pound)
Sunday 3.02pm
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