It's been way too long getting my blog going again. Often what I find is I get busy or have work to do for myself or my daughters and I rarely get time for myself. On top of that, I have to mitigate and deal with fatigue and pain, on a regular basis. What can one do, do your best, try smarter and not harder. So, what's going on since my last blog. 2020 was quite literally the year from medical hell, for me.
The beginning of 2020 (March) brought, a very fast and debilitating version of Shingles, right across my L face. From under my L eye to half of my L lip and up into my L nostril. This is a major nerve, called the V2. The name of the version of the Shingles. I went to the ER and was quickly hospitalised in a restricted and isolated room where I received 2 weeks of treatment with antivirals. I wondered why in the world was I getting Shingles? Isn't that for much older people? I was only 49. Well, doctor tells me that he had considered giving me shingles tablets to prevent an outbreak, however - it clashed with some of my other medication.
The Shingles virus, then decided to descend, into my L side mouth and become a fungus. So, I then required an anti-fungal. During this visit, I also got a lovely Covid test (in April). After going home and a couple of weeks break from hospital - I then spiked a morning temp of 40.1C/104.18F. Greg got me into an ambulance and I was off to hospital again - thinking I might have Covid - I got one of those lovely (up your nose and down your throat - hack, hack) Covid tests that I recall having in my previous hospital stay. Thinking if I didn't have Covid, I may have had Pneumonia. on top of my already Pneumonia filled lungs, with GVHD. This proved to be, not so.
With an ultrasound - the culprit was found to be my Gall Bladder. Which was quite nasty and gross - according to my interpretation of the pathology report. We planned to take it out but had a few nervous young doctors, conducting the operation and worried about how my body may cope. The anaesthesiologist was particularly worried, as she had to take over my breathing for me. After the operation, I required 1 night in the ICU, for intense observation. Luckily, all went well, and I was out again. (In April) Unfortunately, about 1 week later, I spiked more temps in the high 38C/100.4F. We presumed that I had ingested some kind of infection from the operation. However, reading online about Gall Bladder operations - it seems that some people can spike temps, for no specific reason - after a Gall Bladder operation.
I was given another week of IV antibiotics and from there, I went home once again. Then again - I thought I'd be all good for no more hospital this year. But you can never know. I just got out of hospital for a fourth time, this year, for a short visit. Having gone to the dentist and having a bitewing on each side. One side became inflamed with ulcers and sores, after being damaged from the R side bitewing. I then had the pleasure of several days of fevers up to 38.9C/102.02F. IV antibiotics were in order, after I was almost dismissed.
This was because I went to hospital with paracetamol masking my fever. Once my paracetamol had worn off and I was shaking like crazy - they admitted me and there was the 4th hospital visit this year. Of course, I go to my RBWH hospital every month for review and bloods. Recently I swapped regularly monthly IVIG Immunoglobulin treatment to weekly Immunoglobulin, which I can do @ home, watching TV. Much better than being stuck @ hospital for 5 hours every month for treatment. All was good for a while. Isn't that all so much fun? And that is only a small section of one year. I try to avoid hospital, as much as possible - but I often joke - I should have a permanent bed here, or maybe I am part of the furniture.
I am not trying to be silly or depressive - however, this is truly how I feel. A blog is supposed to be the way I communicate with you all and come out and express my daily life. One thing that I really can't stand is the way some people treat me, when they find out my plight. It usually comes up at some stage in an introductory conversation. Plus, my visible support compressive stocking and R leg AFO brace gives it away, every time.
I may have talked about this before - however, it's a constant. Some older people come up to me and ask me if I've had Polio. Some church people seem like they are in agonising pain, when they ask me how I am doing. The comment goes something like this: 'How are you, Jodie?' - My response: 'Good, thanks' ' But this is happening or that is occurring'. The response from them: 'Oh dear, oh dear, oh dear, how awful for you, love' as they think - I'm glad I am not in your shoes. I love my church family and my faith, but the best way to comment after hearing of hard times is simply remarking and reinforcing how strong and hard as nails or heavy-duty that person is. Not express pity and sadness. There is usually enough of that in world, without giving our some more sadness.
THIS IS A LONG BLOG, AND WE CONTINUE....
All was good for a while. But, in August - my ribs started breaking. We know that due to the fact that I have been taking steroids for 5 + years, this has been causing Osteopenia (a softening of the bones). We've then been trying to figure out what kind of movement I've been doing to break my bones, so I can avoid doing those movements.
So, recently (as part of another set of ribs breaking) - I felt clicking, clacking and movements in the L side of my ribs. The breaks do not show up on a normal X-Ray or even a CT. So, forget even trying an MRI, they don't work either. The only scan than does work is a Neuron Bone Scan. So, we tried one of those and instead of finding one L rib broken, this time. We found 8 broken ribs, all over the place. This was quite a shock. I've never had so many broken bones, all @ once and there wasn’t even a hint of a car accident. We were given the results of that scan, whilst talking to my consultant.
As previously mentioned, My Haematologist has considered the reasons in regard to what movement is causing my ribs to break, whilst being affected by Osteopenia. His opinion is that because I also have GVHD (Graft Vs. Host Disease) of my lungs and must breathe harder and deeper than 'regular' folks - this deeper and harder breathing (in order to get enough oxygen) my consultant believes may be contributing to the breaking of my ribs, in combination with the Osteopenia.
So far, my ribs have been broken:
◆ August - 2 R side ribs broken.
◆ September - 1 (Noisy) L side rib broken.
◆ September - 8 R & L side ribs broken.
So, I am breaking my ribs, just by breathing and we have no remedy for this, other than stop using steroids. But I NEED steroids to bring down inflammation in all of the various parts of my body effected by GVHD.
Because I have had so many problems with steroids -(Avascular Necrosis, Moon Face, Edema, Lymphedema of the R Arm & R Breast, Weight Gain, etc.) - we are halting steroids (Prednisolone) and reducing it 1mg a month, whilst I am starting a new (high-cost) drug, usually used by Leukemia patients, called 'Ibrutinib'. The new drug is supplied to me via my hospital, as a compassionate supply drug from the Pharmaceutical Company. It is not available for general sale in Australia, just yet. I am very thankful to the #Janssen Pharmaceutical Company for their free supply to me of this new drug, in which I require approx. 6 bottles per year.
The reason this count is significant is because of the cost of this drug. Because it's a very new GVHD/Blood Cancer Drug, it's worth a fortune. At a cost of $148,000USD/$205,610AUD for a yearly supply. So, the cost of 1 bottle of Ibrutinib is $24,666USD/$32,263AUD. This cost just blows my mind. Amazing!! - So, I should write a letter to say thank you to the company. I am now down to 5mg of Prednisolone, from 10mg per day, without any huge problems.
I have halted reducing my Prednisone @ 5mg for now, until Christmas - which will recommence after that time. The only major two side effects that Ibrutinib creates is:
❦ Bruising (Similar to Prednisolone).
❦ Reduced Appetite/Weight Loss (Which is fine with me, as I have NOT enjoyed many years of increased fatness, thanks to my steroids dosage).
The other great news is my consultant is deeply involved in a new medical trial that he is hoping to get me participating in - to reduce or remove all cells from my body from my donor that may be fighting my own (GVHD).
My donor was a 30-year-old male from the USA. Due to the length of time, we had left @ the end, when we had delays getting my new bone marrow/stem cells from the USA - we had a feeling that he may be from California or definitely from the west coast, USA.
The cells that we want to get rid of or change, through this trial are called T-Cells and they are the fighter cells that try to fight my cells and take me out, as well. Here is more about the trial that will be hosted @ my hospital - https://www.leukaemia.org.au/stories/multi-million-dollar-research-program-to-fight-gvhd/
Much Love,
Jodie & The Guerrero Family xx
