Room with a View!

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Get well flowers from Switzerland.. Thank you

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Room with a view!

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My lovely garden view.

I hope you are all enjoying a Happy Easter, I certainly am, just by being at home and in my nice comfy chair looking out to the garden. I have slept for about 10 hours the last two nights, so that is a great help to how I feel, both physically and mentally. When I first came home I was feeling very tearful, but with some good sleep I am feeling stronger and more positive again. I was really totally unprepared for this post surgery part and the fact that I would be so restricted, sitting is not usually part of my repertoire!! By the time I see the doctor on Friday I will have sat for three weeks!! However what is encouraging is that my knee looks better everyday, when the stitches come out I think it will be quite neat. There is far less swelling and the redness from infection has all died down. I have slightly more movement in the knee maybe 45 degrees but still very stiff, I am just allowing it to move naturally with no forcing it to bend.

The incision in my neck, where the lymph nodes were taken, is healing very well and I am now able to apply vitamins E oil which will help reduce scaring. The scar is actually along my collar bone and I think once healed will be almost invisible. This is a bonus as I had expected an incision actually on my neck.

There is not much to say other than to keep you updated with my progress. Thank goodness for the Internet to keep me connected to the world outside, for games of scrabble, words, books, TV shows, movies and for Jane and Adam who are keeping me sane!!!

Beautiful Node Lady!

Today the Easter Bunny came and released me from my hospital room. What joy to feel the air on my face and to look around at more than four walls. I notice the peace and quiet and the sun, freedom!!!! My friend Jane and I sat outside with a real coffee, yum, before I had to get into the car and be driven home. It’s a bit of a trick to get into a car straight legged but I managed, even if I had to hang out the boot I was getting home!

I have been sent home with oral antibiotics and strict instructions to, ” Do nothing except essential walking.” I am allowed to bend my knee, but it is very stiff, so I am not to force it, just move as is comfortable. I am to still to rest and elevate leg at all times. In fact not much more than in hospital, but I have a bigger space to move in and I did get up and down stairs, even if very slow. I am so looking forward to sleeping in my own bed tonight and not having to wake up for blood pressure, temperature, medications or a change of shift as handover is done!

When the doctor came yesterday he listened to the blood supply with the Doppler machine, again I held my breath till I heard the whoosh whoosh of the blood passing through the transplant and the doctor was happy. I am to see him next Friday unless I have any problems but at the moment it is rest, rest, rest. I am wearing a knee high compression stocking and will see how this goes, though the swelling from surgery is gradually going down and I can sort of see a knee appearing my ankle was swelling a bit, as have not had any compression stockings on for two weeks, so hopefully the knee high will help. Have to say that every day is a bit of trial and error as I progress into new territory.

I had a chuckle today as I looked at the stats for my blog, I love the search engine requests that lead to my posts, today’s said, ” Beautiful node Lady.” Just love it!

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Happy Easter to you all xxx

LRF Holds First-Ever Live Streamed Symposium

LRF Holds First-Ever Live Streamed Symposium.

Although this video is long it has a great deal of very good information about Lymph Node Transfers/ Transplants that I am sure will help anyone looking into this… Also LRF and what they are achieving… Thanks Lymphatic Research Foundation

Please click on link to view.

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Sydney Harbour.. My home city.. Photo Helensamia

Patience is a Virtue

Sitting in a hospital room, however nice, does not fuel ones writing juices and “fodder” for my blog has dried up a little being so confined!! The only source of gossip and stories are the nurses chattering at the nursing station outside my room, which on occasions sounds like a party, it goes into overdrive at change of shift time when everyone meets and greets those arriving. There is great excitement when news of holidays, babies, moving, children and the joys of life and time away from the hospital are shared. One night there was great concern, as a patient had lost her name tags and could not be identified, as she was unable to speak, she was needing a dose of morphine which could not be given with out accurate identity. In the end the nursing home that she came from had to fax a picture for ID! A couple of nights later a doctor came to replace yet another canular and threw my name tag in the rubbish, as it had been in the way!! I asked the nurse to replace it, “Before you forget who I am!” Every drug that is given is preceded by giving your name and date of birth, every single time, even though I have always been in the same room. I said I needed a recording to press each time, especially in the middle of the night! I guess that is better than getting the wrong drug.

The doctor came yesterday and I hope to go home on Friday continuing to take oral antibiotics. There is concern as to how this infection has impacted on the transplant and the ability of the new nodes to create lymphatic vessels. However this is not something which will be known immediately as it was always going to be a slow process. In six months I am to have another MRI and a Lymphoscintigraph to map the lymphatics and their progress. Prior to that I believe it is a case of monitoring the lymphoedema to see if there is improvement. It is very hard to tell at this stage what is swelling from surgery and what is lymphoedema, also the fact I cannot bend leg or move too much does not allow lymph to disperse. I cannot wear compression garments over the transplant at this stage but have ordered knee highs to see if they help. Although I knew before surgery that things would be slow and results would not be seen immediately, I was not really ready for the reality of this and how it would feel. I am reminded of the saying, “Patience is a virtue!”

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Some of my lovely flowers.. Photo Helensamia

The Cockpit!

Just a quick picture of my entertainment unit or as the hospital calls it “The Cockpit”. I have TV, internet, radio and telephone all suspended on a swinging arm. This is also used to order all meals! Somehow I think in this hospital it would be hard to find a pencil and paper! I do wonder what would happen if the internet crashed, as all info is logged in for each patient, a scary thought!

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The Cockpit! photo Helensamia

This is it!

Have tried to take a picture of the lymph node transplant site without it being to gruesome!! Some seemed to make it look worse than it actually is or maybe I am just used to it, for sure it looks better than a week ago! The black line was used to circle the cellulitis to ensure that the area got smaller, not bigger. The red circular area is where the drain was for a week after surgery. Stitches will have to be removed in next few days which should improve the look! Swelling is gradually going down as it was huge after surgery, I can now start to see a slight knee shape! Well I can dream!

My neck is looking good as no stitches on surface. Problem is as drain fell out fluid has to be removed every few days with a syringe, sounds awful but I can’t feel it. Lesson learnt is to make sure drain never falls out!

Doctor now to visit tomorrow so I hope for more news.

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Site of Lymph node Transplant / transfer to left leg. Photo Helensamia

My Little Friend has Left Me!

My greatest companion during my stay in hospital has been my trusty iPad, keeping me connected to the world, providing games and books. Each night I would lay it down by my bed and plug it in to charge, ready for the joys or woes of the day ahead.My little iPad would keep me occupied and keep me distracted when the antibiotics hurt in the veins. Always faithfully by my side, keeping me up with all the news of the world outside, keeping me connected to family and friends close and far. I knew everything about my little iPad, sending emails, sports results and super coach, news updates, writing my blog, checking Facebook, weather checks and words with friends, books, magazines, newspapers, photos, camera, I could hold it all in one small space.

This morning imagine my dismay when my little iPad failed to respond, no flashing greeting waiting for the password, just a black screen. I tried resuscitation, pressing the buttons together for 15 seconds nothing happened, checked the charger had been working, tried again to start up and again and again, eventually I had to respect the fact my little companion had died!! My little mate had left me!! Fortunately I have a two year warranty that my husband found, as the iPad had been a gift for my birthday, so maybe soon I may have a new little companion.

I am writing this on the room computer, but it is no match for the little iPad, its clunky, awkward and difficult to use, even blogging it tells me to update of software!! However I am getting this done to stay connected to you all out there, no pretty pictures, just words instead. I apologise for any mistakes, as I am not used to this and getting tired.

Health wise not much has changed except that everyday I heal more. I now have a PICC line in, so no more problems with IV antibiotics, just have a drip pole to take everywhere! Yes you can imagine, one straight leg and an IV pole going off to the bathroom is quite a sight!! The doctor is to come again tomorrow so I should know more then. In the mean time it is still rest, no bent leg and no further to walk than the door of room. Today I feel better, after more sleep last night, but yesterday I felt very upset and annoyed that I would get cellulitus now. I think I had a post surgery Blues day!! I am also looking forward to going out in some fresh air and walking a little further….. Can’t wait!

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Sydney Harbour Bridge (photo Helensamia)

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Sydney Harbour and Opera House (photo Helensamia)

I Come from the Land Down Under!

We come from a land down under

We come from a land down under (Photo credit: Liamfm .)

Today I was talking to a friend about my blog and how amazing it was that people are following from all over the world. Her quick response to this was, “You are the leg down under”. Well we had a real chuckle at that one, as we come from the land of kangaroos and koalas often known as the “Land Down Under” or better known as Australia.

English: Orthographic map of Australia centere...

English: Orthographic map of Australia centered at 26.75° S, 133.25° E. Official territory. Claimed territories. (Photo credit: Wikipedia)

Sadly I would like to tell you all that I was home sitting in my nice comfy chair and sleeping in my own bed, but it looks like I am to be in hospital another week. The doctor is happy with the newly transferred nodes and listened again to the blood flow. However he is concerned with the cellulitis, which is looking so much better, but there is still a small area and my blood tests still come back showing infection, so I have to remain on IV antibiotics till the blood tests come back clear. I am to have a PICC line inserted, for ease of giving the medication as I  have had issues with the canulars and the type of antibiotic which irritates the veins. I think over the years from having IV antibiotics my veins are not good, this has become a problem now. Hopefully this is the last time I have to deal with cellulitis  as the new nodes start to work clearing bugs!

On the bright side the incision along my lower neck is very, very neat, just a line and healing well, i can hardly see it so I am happy with that. The knee is also starting to look less swollen and the scar neat and straight. (Elizabeth I wish I had thought of the tape measure!) I still have to elevate and rest the leg in a chair or in bed. Still no bending but I can weight bear on it to walk to the bathroom, thank goodness for that, but not allowed out of the room!! If you have to stay in hospital for a while this place is beautiful, lovely room, own bathroom, internet, TV and very good fresh food, which is remarkable for a hospital. I am on the top floor and have a view across bushland, while sitting in my chair I am sure there are some kangaroos and koalas hiding out there!

Koala walking between trees, joey on back.

Koala walking between trees, joey on back. (Photo credit: Wikipedia)

Koala

Koala (Photo credit: runmonty)

Koala sleeping on a tree top

Koala sleeping on a tree top (Photo credit: Wikipedia)

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Kangaroos in the Hunter Valley.. Photo Helensamia

Slow and Steady Wins the Race!

slow and steady wins the race stamp

Slow and Steady Wins the Race.. Stamp USA.. Flickr

I have decided that “Slow and Steady Wins the Race” is my new motto at the moment, a race against the tortoise would have the Tortoise winning at this stage!

My doctor came yesterday and has decided to slow things down, due to the cellulitis, which looks much, much better but have to stay on the IV antibiotics for a while. Again he listened to the blood flow through the newly placed nodes,  I hold my breathe, till I hear the pulsing sound, as the thought of returning to surgery would be a nightmare! The site in my neck is going ok but as the drain fell out prematurely it has to be watched for a build up of fluid. I think I may have got it caught in my sleep, two drains in different areas was a bit tricky. However as of today the last drain was removed and I am now tube free! Yeh!!

Then we get to the race with the Tortoise or mobility, in fact I cannot race!! I am still only allowed to walk straight legged to the bathroom and around my room,only bend 30 degrees. Try that out and you will find that is a very tiny bend, try getting out of bed or sitting on the loo or raising the leg on a stool, I have it down to a fine art!! Originally a physio was to come and visit today and teach me the fine art of stair walking with a straight leg, but that has been delayed, but be assured it will be slow! I believe after the first two weeks I will be allowed to bend  more.

My doctor prefers to be cautious so I am to be here till at least the weekend. He will come to visit me again on Thursday and review the situation,unless there are any dramas, which I do not intend having! In the mean time I am hooked up every six hours to the drip that gives me the antibiotics, which has to run very slowly, as they are the type that irritate the veins. I feel a bit like a pin cushion and dread the site of the blood person or the nurse coming with the Heparin injection to stop blood clots, nasty stingy things that leave a little bruise, my good leg is decorated with little bruises!!

Heparin

Heparin (Photo credit: Wikipedia)

I have to say that today I am very tired and lay down this afternoon for a little nap. I have had lots of phone calls, emails and messages from people and I can feel their strength supporting me. Thank you so much to you all. I have learnt that this will take time and I need to give myself that time hence, Slow and Steady Wins the Race

HARK!! I hear the dinner trolley it must be 5pm!!

My Positive Mojo is Back!

Surgery

Surgery (Photo credit: Army Medicine)

I suggest that those of you who get a little queazy with medical details should maybe not read this post, as I will give details of surgery!

Firstly I am still in hospital and only allowed to the bathroom keeping my leg straight, otherwise sitting with leg up or on the bed. At the moment I am only allowed to bend leg to 30 degrees, let me tell you getting in and out of bed is a real trick!!! Cellulitis appears to have made its last stand by coming up around the knee incision, so some very strong IV antibiotics. I am tired but in no pain, as areas appear numb, but as of yesterday my sense of humor returned and I think my “positive mojo” is back! In the last couple of days I had truly thought myself a lunatic to go through with this!

I have said before that every surgery is different and every doctor has a different plan, due to the needs of the patient. This is the story of my surgery, my experience, as the techniques are so new world wide there is no set procedure, so this may not be the norm but a way towards it.

The last thing I remember before surgery started was the ” Sandman” setting up his lines and then nothing, no pretty pictures or sweet dreams. Waking 8 hours later I felt like shit! I was bloated all over, when you have lymphoedema this is a nightmare, I felt scared,  lost and my mouth felt like a sewer! I had drains, catheter and IV fluids, I was still nil by mouth so no water just an ice cube! That night is a blur, until the doctor came the next morning to explain how the surgery had gone and what the next steps were to be. The first thing he did was to put a small machine on my knee over the transplant to check there was a good blood flow, the reason for nil by mouth, as if no blood flow it would be back to surgery. Imagine my joy when I could hear a strong whooshing or pulsing sound, the doctor was happy too! At last I could have a shower, food, drink, of course my own nighty and the catheter gone. Being able to go to the loo by yourself is one of life’s little treasures when you are in hospital!

The surgery had gone well, though I should now call it a Lymph Node Transfer, as Lymph nodes are transferred from one part of the body to another. The source of the nodes in my case was the neck, so far I have not seen the incision as it is well covered but it is near my collar bone. The doctor said he has got a “nice little bunch of nodes” but it had taken longer to harvest them with a vein and artery as my vein was different anatomically to the norm. An incision was then made down the inside of my left knee, about 10cm. Using micro surgery the bunch of nodes were attached to their new vein and artery, over time these should start to work as “filtration stations” and to form new lymph vessels. However this is a long process and improvement can be seen over years as lymph vessels grow slowly. After the surgery my knee looked like a football and the leg swollen, it is difficult to tell what is caused by the surgery and what is the existing Lymphoedema, I do think it may have gone down a tiny bit but that could be my imagination!

Due to the Cellulitus I have gone two steps forward and three back, so I am sitting waiting for the doctor to visit today and see what next. Thank goodness for the internet and my trusty iPad that keeps me in contact with the world. My time revolves around breakfast at 8am, lunch at 12.30pm and dinner at 5pm! You know you are in hospital when dinner arrives at 5pm!

Lymph Nodes of the head and neck, from Gray's ...

Lymph Nodes of the head and neck, from Gray’s Anatomy (click image to enlarge) (Photo credit: Wikipedia)