Corona- now home from hospital!: I write this to... - CLL Support

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Corona- now home from hospital!

Accordion
Accordion

I write this to let you know that there can be a way out of Covid. I consider myself very lucky, and very well treated. It was a tough time to get through though.

Several weeks of total exhaustion and tightness in chest (thought it was heart failure) I was finally admitted to hospital, after five days of fever 38-39°. I didn't cough, had no signs of cold, or experienced hard to breathe.

All tests for Covid (nose, throat and faeces) were negative. CTScan showed bilateral signs of Covid. I also suffered from loss of smell, and all food tasted awful, very salty.

I was isolated in a Corona ward, and treated as Covid positive. Had five days of IV antibiotics, a few days with oxygen mask, followed by a few days on sulfa tablets (due to a vage positive test for pneumocystis) the sulfa tablets made me very sick, and shaky. (Blood analyses eventually showed I had far to high concentrate of sulfa in the blood) Could not eat or hold a cup, had to drink soup through a straw. Fortunately second test for pneumocystis was negative, and sulfa was off.

I have ITP, constant problem with my thrombocytes, since five years. My Revolade medicine (trombopoetin) was halted, still my platelets escalated to 419 (should be 50-100 on Revolade) I took daily shots of Fragmin to prevent clotting of blood. Blood work every morning at 04.00 to check platelets.....

On my 11th day in hospital I woke up with no fever, and could start to eat. No one could really explain what part of the treatment made me well. I was lucky to have my hematologist working at the ward on day 3-4. (In Sweden doctors from all over the hospital have to work in the new extra corona wards, since there is not enough doctors with speciality in infectious disease. My doctor last week at hospital was specialized in kidney diseases. She was wonderful)

I came home on the 13th day. Extremely tired, but manage to get by. I live on my own. Now try to balance my low platelets with Revolade and Prednisolone. Blood work twice a week. Still very tired. Days are filled with trying to handle activities of daily living, and to sit in the garden. Getting slowly better!

I love this site, and it was a great comfort to me during the time at the hospital. Thank you all answering questions. Managing the clotting of blood is the key to success with Covid, I learned from here.

Luckily the hospital already knew that......

All the best to all of you!

Christina

Ps. It is not unusual to test negative for Covid, dr says. I also tested negative for antibodies, but will try to get a new testlater. I was considered not contagious two days ago, after aprox 10 days of no fever. ( In Sweden we would call that a "guy guessing")

58 Replies
oldestnewest

Wow, I'm really happy that you are at home and starting to get your strength back. Take it easy. All the best.

Accordion
Accordion in reply to Poodle2

Thank you Poodle2! It is a great thing to have a garden. Yesterday I had to drive to the near by hospital for blood work. I am still in strict sheltering and will continue so....

cllady01
cllady01Volunteer

Wow, Christina, you seem to have had co-vid with a bit different slant than we have heard about. So glad you are home and hope all goes well for a full recovery from the experience. Great care was given also. Hope you begin feeling stronger every day.

Accordion
Accordion in reply to cllady01

Thank you cllady01! Covid comes in all shapes and sizes they told me. The doctors are still learning, every day by experience, how to handle it best. Every day you can stay away from the virus is great. The longer time passes until it reaches you, the more likely you can get through it safe! That give hope, if there will be a second wave later in the year. Good bless all health workers!

Christina

What a scary time for you I’m sure. But happy you’re home. Enjoy your garden 🌸 🌺 🍀🌹🌷💐🌻🌼

Accordion
Accordion in reply to Iris123

Thank you Iris! My garden is growing totally wild this spring. Good for bees and bumbles and butterflies!

Wow you certainly have been thru a lot! So glad you are home. 💕

Accordion
Accordion in reply to GMa27

Thank you GMa27!Still I was never in shortness of breath and had no pain so I was probably a fairly mild case....

Thank you for sharing your story. My grandmother was from sweden.

Accordion
Accordion in reply to country76

Nice to hear about your grandmother! Where did she come from? Swedes can be strong and very stubborn!

I think I relied on the fighting spirit of my polish ancestry from 19th century this time....And my sister, who talked me through the isolation. It is very special to only relate to health staff in gas masks during such a long time.

country76
country76 in reply to Accordion

I don't remember at the moment. I have a picture of the house she was born in. I have a letter someone translated for me several years ago, my mother gave me. She lived in the same area as the translator who was a lady from our church. Yes my grandmother was very strong. I loved going to her house.

JigFettler
JigFettlerVolunteer

This is great news. Well done.

I heard from my nephew, ITU Dr in large city in UK, that often Covid tests negative.

Like the chicken... if it looks like, sounds like and walks like one, probably is a chicken.

CLL may not however offer up standard markers for Covid tests.

Pls do let us know how you go. Meanwhile it's time to recover, comfort foods and be kind to yourself.

Jig.

Accordion
Accordion in reply to JigFettler

Thank you Jig! Wonderful about chickens!!!

My dr said that maybe CLLrs dont get immune. So much they dont know yet. But at least it is good to be considered not contagious anymore...I lost three kilos in hospital, have gained two back already.....Eating is my new hobby.

JigFettler
JigFettlerVolunteer in reply to Accordion

I was a little anxious about using any humour in a reply to your most serious experience to be honest! Glad you appreciated it.

Its has been thought that CLL is less likely to mount a cytokine storm which is what causes so much harm. Could we be to some extent protected?

Now time for rehabilitation. Rest. Move. Feed. Seek comfort and happiness.

Many Greetings.

Jig

What a tough time you’ve had. Well done fighting through it and so glad you are now starting to feel better and are back home. Enjoy your garden and take things slowly. ❤️

Accordion
Accordion in reply to Mandy56

Thank you Mandy! Slowly is the word. Everything else makes me breathless! But I think it will get better day by day.🐢🌺

Glad you're on the mend, take it easy.

jenny uk

Accordion
Accordion in reply to very

Thank you Jenny! I do believe in slow daily life recovery, not so much in training......

I’m so pleased to hear you have come through this. I’ve heard it can take a long time to recover, so continue to be kind yourself, enjoy your wild garden, and don’t try to do too much!

Thanks for telling us, it’s so cheering to have some good news.😊

Thank you crisgranny! My grandson 18 yrs will come tomorrow and help me with the garden. I will point and he will cut. You are definitely right that it will take a lot if time to recover. I am still slow like a turtle 🐢but I have noone but myself to take care of so it is fine.

So pleased you are home, after such a hard time. Eat and enjoy life 😸

Accordion
Accordion in reply to sue2412

Thank you! I think of food all the time, but it takes a lot of time to get strength back, I realize.

Christina what an ordeal you have been through! Wonderful news that you are now at home on your way to recovery. Enjoy the 'wildlife' in your garden, summertime and its glorious smells. Did you recover your smell? My daughter also had loss of smell as only symptom of Covid19.

My very best to you and I hope your recovery days will pass smoothly and quickly. 🦋 🐝 🐞 🐦

Ellen 🌷

Thank you Ellen! I got my smell back gradually after the fever got away, and then food started to taste good again. Still tired and shaky sometimes but definitely better.

Christina

Hi it’s great to hear you got through all of this. Thank you for sharing your experience with us, it’s uplifting to hear if anyone surviving Covid especially someone with CLL. Take great care of yourself during this recovery process and keep us updated on how you are.

Ann

Accordion
Accordion in reply to annmcgowan

Hi Ann,

I am getting very slowly less weak, going up and down the stairs carrying a basket to keep all things I need for the moment. Stairs are exhausting!

annmcgowan
annmcgowan in reply to Accordion

Well done keep going slowly does it and you will get there.

Ann

Glad that you are now home. Take things easy, Best wishes.

Accordion
Accordion in reply to Jacksc06

Thank you! It seems it will take a lobg time to get some strengt back...

Jacksc06
Jacksc06 in reply to Accordion

Baby steps!.

PaulaS
PaulaSVolunteer

Thanks so much for sharing your story, Christina. Very helpful.

Interesting that in your case it took several weeks of symptoms and some negative Covid tests, before your condition worsened and needed hospital treatment. As others have said, this virus is extremely variable and unpredictable...

Great that you had such a supportive sister, who talked you through the long isolation times. I have a wonderful sister too, so could relate to that. Sounds like you had a great medical team too.

Wishing you all the best for the future.

Paula

P.S. I'm sorry I haven't seen more of your beautiful country. The nearest I got was when we changed planes at Stockholm airport. We were there a few hours then flew on to stay with friends in Finland.

Accordion
Accordion in reply to PaulaS

Paula, I was lucky, and I didnt have problems with breathing. My trombocytopenia complicated the whole scene. Everyone should have a sister!

Wow! You've gone through alot. Glad to hear you're on the mend. Wishing you the best. Cindi

Accordion
Accordion in reply to Cindi73

Thank you Cindi! I never had problems with breathing, I was lucky....

Thank you for sharing your experience with us. Glad you are on the mend after all you went through. Seems like you had very excellent care. I am petrified about contracting Covid, you offered some hope about surviving it with CLL.

Wishing you all the best during your recovery!

Sandy

Accordion
Accordion in reply to Sojomama13

Thank you Sandy! I think you dont need to be petrified, but protect yourself all there is! Slowly getting stronger.

Sojomama13
Sojomama13 in reply to Accordion

So happy you are in the mend.

Oh my goodness. You have been through a mess. So glad you’re doing a little better each day. Please continue to keep us updated. Thanks for sharing. Sally

Thank you! Getting better. First I felt like a vulnerable snail, now more like a turtle. Slow but with a protective shell....

Remember Aesop - the tortoise got there before the hare 🐇 😉

Such good news! So glad you are on the mend. Covid has had me terrified. So good you have survived. Sending you love from the US (Virginia)

Accordion
Accordion in reply to ZippyZ

Thank you! It is terryfying but I think most people even CLLrs will come through, better and better as times goes by....They learn how to handle it day by day.

That's really good news you are home

Accordion
Accordion in reply to polly49

Thank you Polly! To be able to make the day at home as I want at home is great!

Christina

Hi Christina, so grateful that you are home after surviving the Covid 19! 💜 You are a true Hero for all that You have gone through! 💜 I wish You all the very Best in your amazing Recovery! 🌹

Cindy

Thank you Cindy! Absolutely no hero....I would rather say that the nurses in their black gas masks are the heroes. They work under stress of getting infected constantly...

Glad to hear you survived & it sounds like you had a tough time. It's nice to know that individuals with CLL can deal with this disease with the right support.

Accordion
Accordion in reply to alexmcg48

Thank you! I was lucky, and I never had problem with breathing....

alexmcg48
alexmcg48 in reply to Accordion

Now that's interesting because as you may have read elsewhere my wife is fairly convinced I had a dose of Covid 19, but I would only say it's a possibility, mainly because I didn't have any breathing problems. I pretty much had every other symptom over a 4 or 5 week period, but breathing wasn't an issue.

Accordion
Accordion in reply to alexmcg48

I didnt even cough, or had breathing problems, only high fever. But I did have very tight chest for weeks, before the fever. It comes in all shapes this covid. Maybe you could try to get an antibody test?

alexmcg48
alexmcg48 in reply to Accordion

Waiting for them to say us plebs can have one, although I did read that someone who had a positive Covid 19 test had 3 antibody tests I suppose to see whether he could give plasma & all 3 were negative.

Accordion
Accordion in reply to alexmcg48

My hematologist told me today that the possibility for me to have a positive antibody test is small and I will have to shelter anyway so there will be no test. Even if I had positive test it wouldnt secure I was immune.

And if I was immune, we wouldnt know for how long....

I am getting so used to sheltering, at least in summertime it is quite all right!

Thank you for sharing your experience. It just shows how this virus can be such a shape shifter. Glad you are back home and enjoying your wild garden!

Accordion
Accordion in reply to Mprm

Thank you! It is wild indeed. My grandson will help me tomorrow to clear up a little. I am moving very slow, no strength at all.

Thanks for sharing. I hope you fully recover quickly. It's only in the day that I heard about false negative COVID-19 tests. Thanks for giving me a second data point.

Thank you. Quickly is it not, very slowly I would say. But at home.....My doctor said negative testing is happening sometimes....

Glad you recovered! Spent a year in Stockholm...love your country..miss the kotbullar.

Accordion
Accordion in reply to newyork8

Thank you! Unfortunately I couldnt eat kotbullar at the hospital. Due to loss of smell they tasted awful, so terribly salt! Strange....

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