In reply to my thread I said that I would issue an update as to what is going on and why I am not on the forum that often.
As a recap I had a quadruple bypass in 2018, left leg amputated below the knee during the 2020 lockdowns and revision surgery last summer. Because I waited around 18 months for the revision surgery my quadriceps and back muscles on the left hand side are quite weak so despite a new prosthetic I am not walking particularly well and have ongoing physiotherapy.
However, to add to my problems I had that which must not be mentioned in late 2020 after my area ran out of certain injectables for many weeks.. I was quite unwell for two weeks. I was also left with some issues which affect me to this day. The main problem was that I developed a condition known as that which must not be mentioned Toe. This has affected the smaller blood vessels in my foot and toes which already had poor circulation due to PAD. At the start of the year I got a macerated wound, which is different to an ulcer, on the top of my foot. I then developed another on the side of my big toe. These were treated in podiatry on a weekly basis and I was then referred to the Foot Clinic at the main acute hospital in the area. There I was prescribed a diuretic, Furosemide, which initially helped the healing. However I then developed a number of other macerated rated wounds. Things seemed to be stable about 6 weeks ago and I was discharged. At the time I also had a small macerated wound above the inside ankle which podiatry cannot treat. I was referred to the Leg Ulcer Clinic who rejected the referral for reasons I do not want to go into at the moment. Therefore, the leg is being dressed by district nurses. However, one removed a buildup of dry skin on my lower leg rather aggressively, and within a few days I had a number of other maturated wounds on the leg. Also slightly after discharge I developed two larger macerated wounds on the top of the foot and on the outside side of the foot. This was despite taking the diuretic. The diuretic subsequently stopped as it was hitting my kidneys and put me into Stage 3a CKD (Chronic Kidney Disease) which I am not happy about.
With all this going on I am having multiple appointments including as a minimum each week a visit to podiatry, a visit from the district nurses whose time frame is anywhere between 8:00am and 8:00pm, and a visit to amputee physiotherapy. Add a few other appointments and the week is gone. The erratic Patient Transport system doesn't help either and occasionally a 40 minute or one hour appointment can become an away day.
I have an appointment with the MDT(MultiDisciplinary Team) at the start of next week. My fingers are crossed as when I was expecting to see three people on one occasion, one went to another meeting and another booked a day's annual leave!
Obviously I am very worried about potentially becoming a bilateral amputee and so find it quite difficult to focus at times.
In and among, I am trying to find a suitable forever home as I am still renting. I thought I had found a suitable flat a few weeks ago but have been unable to view as the lift has been out of action for three weeks. In my position this is totally unacceptable as at 100 kg I am too heavy for a Patient Transport crew to carry up and downstairs!
In my current situation I feel I could write a book similar to Alan Bennett's "Keeping On, Keeping On!".
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MichaelJH
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In spite of all you write ,your problems and difficulties, you sound extraordinarily 'bouyant'.
I do hope you are not managing alone and have a partner/ family/ help.I have far less than you to cope with and feel I have nothing to complain about. I do hope you can be supported on this site....that is if you want it. Can you not persuade your Council to give you a ground floor flat or am I living in cloud cuckoo land?
Michael when i joined this forum in 2019 you were one of the reasons i became interested in heart issues. Your unselfish attitude and positivity really helped me through hard times and slow recovery from my bypass surgery. You still have such a positive attitude and are never far away to give advice. I really hope you can get all the help you deserve and that your health improves.
Sorry to hear that Michael. You’re really going through it at the moment. I can sympathise with you having the dreaded illness we’re not allowed to discuss. I had it twice and for two years I did not feel myself at all. Your contributions were very helpful so please don’t think we’re not thinking about you. I am back with the living and getting stronger and stronger and I’m sure you will too. Chin up and take care.
Hi I am sorry to hear what you are going through at the moment it sounds just awful, I really hope you get the medical treatment you need and somewhere permanent to stay. Take care char
I don’t really know the right words to say, but I feel so sorry for everything that you have been dealing with since before 2020 and coming forward. I can’t even begin to understand how you keep keeping on, but, yet, I know that we all feel that life is Hope. I think that Hope is mainly what keeps all humans going.
You must feel so exhausted and frustrated at times. I wish that I could say something to help you feel better—but I can only say that I care and want things to improve for you.
Is there anyone, or a neighborhood agency, that could help you to locate a suitable flat? You might feel increased Hope if you could find a permanent place to relax and live. The place with an out-of-order lift sounds too scary to me. I would always worry about the lift going wonky. Probably finding a new place might be a top priority, and it would be a blessing if someone could help you locate an appropriate place.
I surely hope that your doctor and nurses can get your foot and leg wounds resolved. That all has to be so scary and horrible for you, and probably painful too. In December 2020, I developed styes on my left eye. They just kept getting worse—I had styes on my upper eyelid, lower eyelid and even inside the eyelid. I was told that this was the worst case of styes that the doctors had seen. I tried steroids, OTC eye drops, prescription eye drops, soaked my eyelid with hot wash clothes 2-3 times per day, used cleansing pads on my eyelashes, and finally went on an antibiotic for months. It literally took two years to finally see improvement. I remember the look on people’s faces when I went out in public. They may have been afraid of catching what I had, and my eye did look horrible. BTW, styes are not contagious. Anyway, there were times during that two years that I felt that my eye might never be better again, and I also had my HA in 2022. I know that this is not even close to what you have been through and are dealing with, but I know that it sometimes seems that things might never improve and that everything is all wrong. But, we keep hope alive.
I really hope that things begin to turn around for you. You have been so strong and made it through so much. You deserve to have a break. I am sending positive thoughts, prayers and a virtual hug your way! ❤️
Hello MichaelJH, I cannot begin to understand what you are going through, let alone the resilience you show in dealing with these challenges. I can only hope that you get the same level of support and understanding you need from the services and help you require, in the same way as all the support you undoubtedly show to others on this forum. Take good care. Judi 🤗🤗
You do express yourself well and I wonder if you could have a stab at writing something more speculative....Funny you mention Bennet, i was thinking singing detective.
I'm guessing you're a big reader.It's clear you need some form of escape. I hope things go well for you.
Sorry to hear of your difficulties and all you are going through. It was only yesterday I thought I hadn’t seen much from you lately. Your contributions are always valuable. I hope your situation improves very soon.
Hi Michael, there is a lot going on, yet you still remain positive, I applaud you. A positive state of mind will help in surviving your situation I'm sure. It must be hard finding a new home, it doesn't take me to tell you that the ground floor might be the best. I don't know where you are geographically, but maybe you should cast your net wider.? I wish you all the best. Steve
Hi Michael There is little to say about your situation - it sounds appalling and yet you have managed to continue to write such comforting, wise posts here to others in spite of your own difficulties. The consequences of diabetes and PAD are devastating and I so admire your fortitude - although I am sure there are times when you don't feel at all strong. Please do stay in touch with us, we are all thinking of you and wishing you well. Frances
Hi Michael, I can’t add to all your lovely reply’s but just to say I’m sorry you are having to deal with so much I hope your foot is soon healing well and you are able to find a suitable home. Take care
Hi Michael, I'm so sorry to hear how badly life is treating you. You are certainly an inspiration. Just a thought re your getting a ground floor flat. Have you tried reaching out to your local member of parliament or similar authority? I live in Australia, but on a couple of occasions, when necessary, I have emailed my local member (and CCed it to his opposition 😊) and have received help. I sincerely hope you get the help you need ASAP. Take care, Sandy.
That is a lot to contend with and I salute you for your fortitude and tenacity.
As you are renting and looking to buy, agents should be champing at the bit to find you a ground floor place. You are a perfect motivated buyer. Where are Kirsty and Phil when they are needed?!
Sending you kindest wishes and hoping you get good treatments and resolutions.
That is a LOT to deal with. Just attending all the appointments, with the lack of coordination between or within departments, must feel like a mission. Not to mention how you must be feeling, and the ongoing adaptations to adjust to.I've been on this forum a couple of years now and it's the first time I've heard you talk about your situation.
You are normally supporting others and/ or generating good cheer. You are obviously someone who can deal with a lot but I hope you have someone you can offload to, when required.
Michael, I am so sorry to hear what you are having to go through. You have so much to contend with and keeping going throughout it all must be challenging to say the least. The fact that you do, shows your strength of character but it cannot be easy when life seems to give you one challenge after another. Sending you virtual hugs and every good wish that your situation improves soon 🤗🤗
hi Michael. I’m so sorry that you are going through such a difficult time. Sending you best wishes and a virtual hug.
Reading your message my heart goes out to you. With so many health issues to deal with and such poor support I am amazed at how you manage to remain so positive. When my health issues get me down: a stroke, an AVR, diabetes and lung cancer I re- read some of your messages for inspiration. That's me leaning on you and your philsophical outlook for support and really it's you who could do with leaning on the rest of us. If prayers matter to you Michael then you have mine and all my virtual support.
I can’t add anything to sentiments already expressed in the replies but I just want you to know that I also have enjoyed/appreciated your posts, so keep on keeping on!
hi Michael. So sorry for all you’ve been and are going through. Voldemort visited me once and stayed for about 6 weeks. I do hope it all resolves and that your fears are not realised. Looking forward to seeing your quizzes/puzzles/jokes again soon.
Hi Michael, I noticed you aren’t on here as often and wondered how you are. Sorry to read about your problems, I also have diabetic problems and you have my sympathy. My husband had a mobility scooter as his health deteriorated and it was a life changer for him, it meant he could get to the ex serviceman’s club and have a social life! Perhaps this might be an idea for you. I’ve always followed you on here, you have often cheered me up.
Following my HA in 2019 I developed Stevens-Johnson Syndrome from that that shall not be mentioned, in 2021. From then on I have had substantial health problems, I find it ridiculous on this site you cannot mention the Elephant in the room and don’t post much anymore.
I'm so sorry to hear about your ill health. I always read your posts because they are so level-headed and positive. I really hope everything starts to improve soon and that you find somewhere permanent to live.
Hi Michael, what a difficult time youhave & are going through. Ihave always been very greatful to you for your bbqs, afternoon tea parties, quizzes etc. 4/5yrs ago I really NEEDED these at the beginning of my recovery. Hearing now how very difficult/almost impossible things have been for you I am humbled by your bravery & perseverance.
THANK YOU does not even touch the sides! I really do think so many of us on the forum have so much to thank you for particularly for cheering us up on what could have been dark lonely days, with a scone debate, pimms or gin and a good sprinkling of humour.
I so hope you can find the ideal place to live, outstanding treatment by some miracle to prevent a further amputation and excellent support to see you through this ongoing horror rollercoaster you seem to be on.
You are an inspiration to us all but I so wish you were not going through this and needing to be so brave.
May you start to have more good days than bad and better services, treatment and health all round 🙏🏼
I am so pleased you posted this update. You told me you had told a few other people on here but I am sure you will feel better having not to think who have I told. Hopefully your upcoming appointments will give you a co-ordinated way forward and a good outcome.Off for my newspaper and Spanish omelette in an hour or two.
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