Thursday, November 11, 2021

4 years since the second transplant!

The 31st of October marked 4 years with my second set of gifted lungs!!!! Time has flown SO MUCH! It's unreal. I thought it's time to update the blog a bit. 

So health wise everything is good! So far I've still had NO ISSUES with these second lungs. They are beautiful and I love them. I had an outstanding check-up last week. My blood results were all normal, and my kidneys are doing better than they have in years. Not that my kidneys are bad, but 14 years of immunosuppression does take it's toll. 

Something that's big for me though... as that as of yesterday, all my immune suppression has been changed... the reason for this is my history with the hysterectomy and abnormal cervical/vaginal cells. So one specific medication, Everolimus or Certican, has the "side-effect" of being very good from a cancer perspective. As well as suppressing your immune system for transplant purposes. So my dose of Certican has been pushed right up, and my Cellcept has come down from 1250mg twice a day, to 500mg twice a day. Neural has halved, from 50mg twice a day to 25mg only. Prednisone stays at 7.5mg. These massive changes make me very nervous! However I've had big changes in the past and my lungs were fine. So I just have to trust that they will be fine now too.

I didn't go big with celebrating this year's lungaversary, but next year will have to be an epic one... 5 years is a milestone! 

In very exciting news... On Sunday I'm off to Mauritius with a friend from school! Carli! We booked the tickets in August already, hoping the Covid won't spoil our plans, and it seems like things have worked out for us! Soooooo excited. We're not staying in a resort, will be doing our own thing. Will post pictures!

Tuesday, July 6, 2021

Good results!

 Just feedback on last week's many procedures and biopsies, because so many people wished me well!

Colonoscopy and Anoscopy was 100% normal. Zero issues there, I can repeat in 4 years. Whoop whoop.

Tongue thing was a fungal/candida issue. Possibly due to years and years and years of antibiotics. Hopefully I can prevent it from happening again by using the only anti-fungal mouth medication that I'm allowed. Apparently all the others interfere with my meds. Might have to use it every day forever. That's fine if I'm can eat all food again without pain. Luckily it wasn't anything serious. Still have 4 stitches in my tongue that should fall out soon, but at least it's not painful anymore and I can eat more than just soup now. 

Vaginoscopy results were also good. The abnormal cells I had left after the hysterectomy are less, and less severe. Only a "mild" abnormality left. I will continue current treatment for another 4 months. Thank goodness! I was stressing about this one the most!

So a "clean" bill of health basically. As clean is it's going to get. I was SUPER impressed with Donald Gordon Medical Centre's care. Everything was on time. The covid protocols were great. I wore both my masks the entire time I was awake. When I woke up in recovery both masks were back on. (it was also pretty cool to wake up in recovery with no oxygen and 2 masks on, with O2 sats of 100%. ) Take that people who complain they can't breathe while wearing a mask! All 3 surgeons and the anesthetist were also absolutely amazing. I did struggle to keep my blood sugar up with having not eaten for 24 hours before surgery, but eventually I was taken to theatre just in time for a glucose drip. Which was a nightmare to get in, because CF veins, but all worked out fine. 

Sunday, June 27, 2021

Third Wave, Pandemic Anxiety, Surgeries on Tuesday.

 So Pandemic shit got real these past few weeks. Especially here in Gauteng. It feels like EVERYONE is just getting sick. Everyday more people that I know have Covid. This past week three SATSA members (Transplant Sport) passed away. Two were transplant recipients and one was the husband of a heart transplant recipient. It's bizarre.... how people are desperately asking me if I know where you can get oxygen on the "black market" (no I don't), and asking me all sorts of lung related questions, because I'm an expert in that area. Also - suddenly everyone knows what a pulse oximeter is. WTF... how times have changed. I bought mine on Amazon in California in 2015, because they were much more affordable than the ones available for sale here in SA. Now every second person has one. Hearing people with Covid talking about their O2 sats has made me test mine again! At least all is still good in that area... tested it yesterday while cleaning my flat. 

I've been self isolating since Tuesday... because I'm having a whole bunch of scopes and biopsies done this coming Tuesday. They are as follows:

Colonoscopy and Anoscopy - because I'm over 30 and have CF and have been on immune suppressants for almost 14 years. So that ups my risk for colon cancer. Joy... 

Tongue examination under anesthetic and biopsy - because I have a funny spot on my tongue, that has really confused my lung specialist as well as a head and neck surgeon... they both have no idea what it is, so they want to check it out while I'm out, and then probably cut the whole thing out and send for biopsy. 

Vaginoscopy - with my hysterectomy last year in November, they didn't get clear margins when they cut out my cervix. So there was still some medium grade abnormal cells left. They've been treated, so it's time to see if it worked.... very very nervous for this one. 

As you can see, Tuesday and Monday will not be fun. I just want to get it over with. Every orifice will be examined by 3 surgeons... kudo's to them for organising it so well though. I much prefer one insane day like that than 3 admissions, especially in a pandemic. I had my 13th Covid swab done today, and luckily it was negative as expected. All of this will take place at Donald Gordon medical centre. 

PLEASE NOTE: these types of procedures are all part of being a transplant recipient, especially as time passes after your transplant. There is a lot of stuff that need to be checked out ALL THE TIME. It doesn't mean I'm not doing well, or that I'm sick (I'm really in better shape than ever), it's just managing the side effects of taking 4 immuno-suppressants. And 30 years of cortisone use. All the things that have kept me alive. Fingers crossed that all the results are good!

Wednesday, March 31, 2021

Blogging on the Backburner

As you may have noticed, I hardly ever blog anymore. Life's pretty busy, but I do post on Instagram and Facebook a fair bit! So if you'd like to keep up with my journey with these second set of transplanted lungs on a more regular basis, follow me on either one of those 2 platforms. If there is big news, I'll share it here!

Also, today marks 3 years and 5 months with the new new lungs, yay!

Friday, January 22, 2021

13 Years

Today marks 13 years since my life was saved by donor lungs for the first time. Even though those lungs were replaced 10 years later, it doesn't take away from what they gave me. More time with friends and family, and a much more "normal" life. As with every 22 of Jan, my thoughts are with my donor's family.

My last x-ray with the original lungs and most recent x-ray with current lungs... Will always be a miracle.

I almost feel bad celebrating stuff at the moment, with all the sadness that is happening around us every day. People passing away due to covid. people struggling financially for the same reason. A helicopter crash that happened yesterday with members of my transplant team involved. Seeing friends who work as frontline workers being drained and exhausted, seeing people suffer from depression due to everything that's going on. Life is really hard right now. And it doesn't feel like there is an end in sight regarding Covid. 

Yes we'll eventually get the vaccine in SA. Much later than we should have, because we're not a first world country where things are efficient. Even then, it's not 100% effective. The one we're expecting to get is 70% effective. Combined with all the people who are going to refuse the vaccine (according to one article I read, 53% of SA's population), there will be no herd immunity and it definitely won't be safe to have a normal life again. Covid has really cast a spotlight on how many stupid, uneducated idiots live among us. 

I was supposed to have a transplant check-up today, but it was cancelled due to the current wave of Covid. I'm just glad that I had my hysterectomy when I did in Nov last year, and that it's over and done with. For now, all is good with my health and I'll take it. 2021 looks like it will be rather bleak, but I think you just have to take it a week at a time. I've been through worse, even though this is very different.

Thursday, December 17, 2020

17 December

The 17th of December has been a memorable day for the past 3 years! In 2017 I ran on the treadmill for the first time after my second bi-lateral lung transplant. In 2018 I tore my Achilles tendon for the second time, and last year I arrived in London on this day. Nothing much to report for 2020 though. 

Yesterday Brendan, Marius, Andrew and I had a little Christmas lunch before they go home to PE etc. It really was very nice. These have basically been the only people I've socialised with the entire year. So grateful for these three!

The main excitement in the family is the fact that my sister's baby girl is arriving in Jan! We can't wait! The whole family will just be here for Christmas. Looking forward to just seeing the end of this year.

I see that I never posted anything about the picnic I had for my 3 year lungaversary... It was an AWESOME celebration. I've been trying to have a picnic every year since the redo transplant, and every year it has rained. However it was third time lucky this year. (Strange, saying 2020 and lucky in the same sentence!). The weather was great, and got to see my favourite people!

My check up 10 days after the hysterectomy went fine. The surgeon said she would have let me go home the same day still, but the other Drs were a bit weary of that. Cuts have healed well, and last night/this morning a lot of the dissolvable stitches fell out. Seeing her again on 13 Jan.

Also had a lung checkup on 1 Dec. Lung function was down a bit, probably due to the anesthesia. Kidneys are also taking some strain with the combination of meds I'm on to allow for healing after the hysterectomy. However I'm switching back to my usual meds next week Monday. Yay! May this be the last surgery in a while! So much admin! Will have another checkup on 22 Jan, which will be the 13 year anniversary of my first lung transplant! 

I probably won't blog again before Christmas, so MERRY CHRISTMAS!!! 

Tuesday, November 24, 2020

Hysterectomy - check

I had my Total Laparoscopic Hysterectomy 8 days ago. To be honest it's been the easiest surgery I've ever had. The build up to it (admin, biopsies, pap smears, bloods, uncertainty regarding whether I'll keep my ovaries) was much worse than the actual procedure. I spent 1 night in hospital post op, in ICU. Was home less than 24 hours after the surgery. And I DID get to keep my ovaries... they were deemed "pristine" and not worth removing, for which I am very glad. No early menopause!!!! Thank goodness. There's hardly been any pain, felt more like I overdid it with a lower ab workout. Medical advancements blow my mind!

The selfie was taken about an hour after I woke up. The oxygen was mandatory in ICU, although I did manage to subtly get rid of it after a few hours and no one said anything. Had to inject myself with Clexane for a week to prevent clotting, which I'm done with now. The next step is my check-up on Thursday with the surgeon. She'll remove the plasters and hopefully give me the all-clear to drive again. Then my life can basically go back to normal. Also need to find out what the rules are regarding exercise. Right now I'm only allowed to walk. It will probably be that way for a bit. At least once I can drive again, I can also go and walk at the gym, for some variation and more Vitality points.

I spent last week at my parents' house. Working a bit, taking naps, watching The Crown and building a puzzle. On Saturday morning my dad was kind enough to drive me to breakfast with Robyn. She's a long time friend who had her kidney transplant just a month after I had my first lung transplant. We were roommates at our first World Transplant Games in 2009 in Australia. She lives in East London, so was great to be able to catch up with her again.

I'm very happy to be back at my own place now since Sat afternoon. Tay-Tay (the kitty who chose me) is very glad that I'm back. Counting the days till this rather crappy month and year is over (it could have been much worse, and I was healthy, so trying not to complain too much). I have one lung check-up left as well, on the 1st of December. Really hoping that goes well and that I can end the year off on a good note medically. 

Tuesday, November 3, 2020

3 Year Lungaversary, 2 Trips Away, 1 Hysterectomy pending

First things first, Saturday I celebrated 3 years with my new new lungs!!! I've done quite a bit of googling about the survival stats for redo lung transplants, and the average seems about 3 years. Needless to say it's not GREAT, and reaching 3 years without any rejection so far is amazing. Feeling super blessed and lucky, and I appreciate the easy breathing every day!

Then, I've finally been able to have two awesome mini-breaks in the past 6 weeks. At the end of Sept I went to Mabalingwe with some friends. We had an amazing long-weekend in the bush. The weather was good, we got some good doses of covid-fighting Vit D. Thank you summer! It was SO GOOD for the soul to be away with friends. Listening to music, eating too much, going on game drives, drinking gin and tonic, soaking up with sun. One of the highlights of the year. Especially after the cancer scare I had the week before.

The second break was a long-weekend to Umdloti in KZN. I badly needed to see the sea, it's been 2.5 years! We had the best time, especially the snorkelling! Just amazing. Wish we could have stayed longer.

Then lastly... I'm getting a hysterectomy on the 16th of this month. My cervix has been the bane of my existence since my first transplant. 13 Years of immunosuppressants come at a price. I've had problems with abnormal pre-cancerous cells since 2009. They have been burnt off and cut out in theatre and in the Dr's rooms many many times. But now there is literally almost no cervix left to be able to do that. And there are highly abnormal cells once again. So my uterus and cervix are coming out. We're hoping to keep the ovaries, and I've been having blood tests done to try and determine if we can leave them. I really really hope so. I do NOT particularly want to go into menopause.

My gynae has been amazing, and the op will be done laproscopically at my transplant hospital, where they don't normally do gynae procedures. Two Drs, all their equipment and a nurse will come for the op. My transplant anesthetist (and favourite vein whisperer) will be the anesthetist on the day. And my transplant surgeon and lung physician has also helped to arrange the theatre time and admin behind all of it. I feel SUPER special! And very relieved that it will be done with the team of people I know and who know ME inside and out! If all goes well I will spend one night in ICU and go home the next day. 

The Dr who will be performing the surgery laproscopically is not my usual gynae (she will also be there though), and I'm meeting her on Thursday. As of today I have also stopped my one immune suppressant, Certican/Everolimus, as it delays wound healing, and massively increased my dose of Cyclosporin/Neoral, to optimise healing afterwards. Next week I need to have blood tests done to make sure the adjusted doses are right. I guess I can't claim I'm low maintenance......

I'm very very relieved to have a date for this and that it's finally happening. It's been hanging over my head for years. At one point about 4 years ago a hysterectomy was also very much on the table, but my lungs were not in very good shape. There were talks of doing it with a spinal block while I'm awake. But my Dr was able to cauterize the abnormal cells off, and since then by some miracle it's been OK for a bit. However now my lungs are in tip top shape, so it's time.

Saturday, September 19, 2020

Cancer Scare

What. A Week. What started out as me being worried that I have Covid, turned into me being worried I have cancer that has already spread.

On the 8th I started feeling a bit crap. Extremely tired, headaches, sore body and some random nausea. I thought I had exercised too much, because I did sprints on the Monday, so thought my body was sore from that. On the Thursday I went for a Covid test, which was negative. On the Friday my Dr sent me for bloods, as well as another nasal swab for other respiratory viruses such as flu. On Saturday it showed that all those results were normal, but that my infection markers were very high. So I went for another Covid test. It was negative again. On Sunday I felt rather like death, and there was a bump under one of my old drain scars that was very sore and swollen. My Dr said I should be admitted.

I saw him on Sunday, and he said the lump might be an abscess, which would explain the infection levels and the pain etc. I started Augmentin antibiotics, had a chest x-ray done immediately, and had an ultrasound booked for Monday morning, plus a lung function test. Chest X-ray was normal (and beautiful to me, as always, may I add). 

The ultrasound of my scar just showed scar tissue. No abscess. I started feeling even more feverish, and by the time I got fetched for lung function, I was shaking so badly from having a high temp, that it was decided that I'm not going to do lung function because it wouldn't be accurate. My lungs didn't seem to be the problem anyway. Dr then suspected a broken rib, and booked a bone scan. You get injected with some sort of radioactive fluid 3 hours before the scan that gets absorbed into your bones, and makes the scan possible. The white dot on my arm was where I was injected. By then I was feeling much better though, and the fever had stopped completely. (Note how nicely you can see my N95 mask on the scan)

The bone scan report stated that there was possible bone metastases.

"Bone metastasis occurs when cancer cells spread from their original site to a bone. Nearly all types of cancer can spread (metastasize) to the bones. But some types of cancer are particularly likely to spread to bone, including breast cancer and prostate cancer."

Dr immediately ordered x-rays of my sternum and femurs. This is where the suspected metastasis was. I also had a mammogram done, as well as a full abdominal ultrasound. Those were both normal. There is a cyst on a kidney and my pancreas but those are nothing to worry about. Boobs are fine.

The report came back and mentioned "Non healed sternal fracture" and more concerning, "A lytic bony lesion in this region cannot be excluded". Obviously I googled that, and Dr Google informed me :  Also known as bone lesions or osteolytic lesions, lytic lesions are spots of bone damage that result from cancerous plasma cells building up in your bone marrow.". So bone cancer fears.

Next Up was a massive CT scan with contrast, all the way from above the knee to neck. My kidneys had to be prepared for this, as the iodine that they inject can be rough on them. So a Bicarbonate drip was started Wednesday afternoon. I also had to drink Solmucol for kidney prep, and Gastrografin (Gastrografin is a contrast medium which contains iodine. It is used to clearly show on X-rays the area of your body that your doctor wants to investigate.). On Thursday morning I was woken up at 6:30 (after just falling back to sleep from the daily bloods and observations) for more gastrografin. CT scan was set for 8:30. Unfortunately there was a big trauma case(s), and I only went for the CT scans at midday. By which time I had to be given a glucose drip due to my blood sugar dropping too low for a second time. The injection of the contrast was extremely sore, my little vein was on her last, and I suspect it was a LOT of contrast. 

By this time I felt like my life was over. That 13 years on immune suppression had caught up with me. That despite regular checking for skin cancer and pap smears, another type of cancer had decided to come and take me, and that it had even metastised already. I was making plans to use the rest of the money I have to travel and just die with lots of morphine. No chemo. I felt like life was playing some sick joke on me. I would die with perfect lungs. I wanted to scream and break things. Run away. Wanted to cry about how unfair it was, but at the same time, I've seen much more "unfairness" than this in my life with other friends dying young ect. So what makes me so special that I can't die after 10 years and 3 years with transplanted lungs? I've already surpassed the averages. Why is this unfair?

At 15:00 my mom came to visit, and at about 15:15 my Dr walked in and said the CT scans were fine. I can go home immediately. It felt like I had won the lotto. Shock. Relief. More relief. I don't think I have ever heard better news in my life. It MIGHT compare with being told they have lungs for you. 

The sternum issue is just the way it healed after 2 transplants. But there's nothing wrong with it. (I realised afterwards... the radiologists have never SEEN a healed sternum of someone who has had 2 bi-lateral lung transplants. There is just me who is alive in SA???). 

The femur has a tiny "normal" little growth that is not a problem either and happens. Most people never find out about it. So I'm clear. There is nothing wrong with me. By then the oral Augmentin had also fixed whatever infection there was. So I came home, feeling absolutely fine, apart from being tired AF, and like I've aged about 5 years in 5 days.

The lump under my scar had gone away by itself. It was still a bit sore to the touch, but was literally nothing. Unexplained. During this drama, my immune suppression has been lowered slightly, and Cellcept has been put back up, but Neoral and Certican are going to stay a bit lower.

These past two mornings waking up in my own bed with no fear of imminent death or needles being stuck into me, and breathing easily, has been heaven. Absolute bliss. I'm very far from ready to die. I have a niece on the way. I have my family. I have the best friends ever. I actually feel fucking fantastic (apart from the past 2 weeks). Better than I have felt in my entire life. This was the first hospital admission for being sick in over 3 years. 

I'm seeing my Dr again for a check up on the 1st of October. Hopefully all my bloods are back to normal, and I'll finally have that lung function test done. Saying this week was an emotional rollercoaster is putting it mildly. But I'm so so so relieved to be fine.