October 16, 2018 at 8:49 am #14870
This forum is filled with such wonderful people who are always willing to help by sharing their experiences and/or updates from physicians regarding any topic I tend to write about. First and foremost, I am so grateful for that and to all of you who are a part of this amazing community!
The last couple of days I’ve noticed two unusual symptoms I am trying to manage, which I never regularly noticed before. That said, the weather here has drastically changed from 33 degrees celsius last week, to 4 degrees today with an overnight low of -1. I am sure some of these symptoms are just my body adjusting as the seasons change, but they have lasted a few days and I am not sure whether or not they might be related to my idiopathic pulmonary fibrosis (IPF). They are:
1. Exceptionally dry skin: typically I get this in the winter, and the last two years since my diagnosis I am finding it worse than ever before. However, I’m not sure why it is so present now. My skin feels itchy and dry; I am consistently putting moisturizer on in hopes of alleviating the dryness. I would expect this in my hands as I am washing / sanitizing my hands so much due to cold and flu season, but I experiencing this on my arms, legs and feet as well. This is unusual for me at this time of the year.
2. Scent sensitivity! I’ve experienced this before, and even wrote a forum topic back in June about increased scent sensitivity since my diagnosis of IPF. I find I am bothered by this occasionally since my diagnosis, but the last few days I’ve really struggled with it. I am noticing people’s perfume a lot more, soaps are bothering me and tonight I lit one of my favourite candles (since it is so cold outside now) and I had to put it out shortly after because the scent was too strong. I don’t think the latter point about the candle has ever happened to me before!
As some of you know, I was sick last week with a flu and am still working through both flu and cold-like symptoms sporadically, so perhaps these things are ‘lingering’ after effects of this? I’m not sure, but wanted to ask you all:
Do you suffer from either of these unpleasant side effects/symptoms?
If so, did they start before your diagnosis of IPF/PF or have they gotten worse since then?
October 16, 2018 at 11:54 pm #14889Steve DaggettParticipant
In response to your post, BOTH cold weather and strong scents have affected me for a long time (sounds cold up there!)
In other news, it’s been 3 weeks ago today that I got the call from UCLA that they had a lung for me! I was out of state at the time, but I was able to catch a last-minute flight that got me there in time! Not only me, but my wife and two adult sons were able to come too! (My wife is my caregiver, and she will be on family medical leave until January 1! We need to stay in Los Angeles until then (so many follow up tests and appointments!)
The surgery was successful, and I’ve had very few complications. I was in the hospital for 2 weeks, and ‘home’ for a week. The coolest thing is that day 2 post op they took me off oxygen, and I’ve been on ‘room air’ ever since! My O2 saturations are in the high 90s. I can actually take deep breaths without coughing, although it will be several months (including pulmonary rehab) until I re-learn how to breathe! I had, out of necessity, forced myself to breathe shallow to avoid coughing for nearly 10 years. So I have to re-train my muscle memory. Because I’m over 60 (61) they qualified me to receive one lung (left). It was in worse shape than the right. I still have IPF on the right, but the new lung will take over most of the breathing for me.
I found out my donor was a young man under 30. Very sobering. After 6 months the donor’s family can reach out to me if they like. I’m totally cool with that!
I’ve been staying with my cousin in LA since April, and will stay here until after Christmas. His house has a full set of stairs (16) up to the front door. Before surgery, I would have to stop 2 or 3 times to catch my breath (even with 5L oxygen) and it would take me 5-10 minutes to recover after that.
Now I can climb the stairs without stopping or slowing, and I’m only briefly short of breath (like a minute), then I’m good to go! That will even improve as I continue to recover and exercise more.
The ONLY tradeoff for me is now having to be on a stupid amount of pills each day. But even since my discharge from the hospital, the amount has decreased, and will continue to decrease as time progresses. However, I will NEVER be able to discontinue the immunosuppressants. But at least I can breathe again!
Anyway, just wanted to share the good news!
October 18, 2018 at 7:39 am #14904
I am SO happy to hear from you – thank you so much for writing to me!
It sure is getting cold up here! Yesterday we had wet snow (it is only October, I was not happy Lol) but none of it stuck around thank goodness. However, it is still very chilly here and doesn’t look like the temperatures are warming up any time soon. I’ll need to start thinking about coats, mitts, hats, etc.
More importantly… it sounds like you recovery is going very well, which I am so happy to hear! What a whirlwind that must have been for you. I remember you saying you were going out of state but had hoped a plan to get you back to LA if needed could be put into place, so I am very happy you (and your family) were able to get back in time. What wonderful news! Was it completely unexpected the call? How did you react? I dream about that day and what it’ll be like for me.
I bet learning to breathe again, especially on room air without the oxygen has been amazing! It gave me goosebumps to read about your ease with doing stairs again, I can’t imagine how good this feels. So glad your wife is able to be with you and I wish you nothing but the best as you continue with your recovery. Do keep us posted, you’re an inspiration!
I’m so curious to know/hear if you connect with your donor’s family. Of all the people I’ve met who have had lung transplants, none of them were able to connect back with their donor’s family. The idea of this would be amazing to me, but I know it is a very personal preference, so please don’t feel pressure to let me know if you do get to experience this.
Keep up with the immunosuppressants for sure to keep that lung safe and protected. I can’t wait to continue to hear how you’re doing with your recovery!!!
Warmest regards. I am so happy for you!
October 19, 2018 at 2:30 pm #14915
Hi Charlene, My mother Began to find scents and itchy skin with ipf, but it was perhaps her steroid meds with the skin. She is taking a COD liver oil supplement to help relieve skin dryness and it has worked.The scent sensitivity is perhaps because she has oxygen and it changes the enjoyment of strong scents. Hope this helps. Zoe
October 21, 2018 at 2:47 pm #14921
That does help, thanks Zoe! I had never heard of using COD oil for this, but definitely willing to give it a try. Right now I’ve found a cream that seems to alleviate the dryness in my hands, even with constant washing, so I’m good with that for a little while. However, I am going to look into other benefits of COD oil too and maybe make a switch if it can help me with some other things. Makes sense that this could be partially caused by the steroids!
Thanks for sharing.
October 19, 2018 at 3:15 pm #14916Jacki BaumParticipant
I have have had itchy skin for a long time, befor my diagnosis, and I live in South Carolina where it is hot and humid for long periods of time. My dermatologist recommended a product that has helped so much. It is called Curel, Hydratherapy wet skin moisturizer. You apply it after your shower on wet skin and pat dry. It works!! I get it on Amazon, I could not find it in the store, but I really did not try very hard. I am not on oxygen, I am in early diagnosis had been on OFEV for about 9 months now. Holding my own, going to see my Drs on Monday and will take the walking test as well as a PFT so hoping for good results. Hope this information helps. Great news Steve, keep on working on your recovery, you are blessed.
October 21, 2018 at 2:51 pm #14922
Nice to hear from you, thanks for writing to us!
It sounds like what your dermatologist recommended is something I could use – as my biggest struggle right now is any/all hand creams washing off when I wet my hands either with hand-sanitizer or washing them to keep the germs away. I did find one product but it is very expensive, so maybe I’ll take a peak at what you suggested. I will look for it on Amazon as well, thank you!
Goodluck with your upcoming appointments. I’ll be thinking of you. Your information is very helpful, thanks again 🙂
October 25, 2018 at 6:45 am #14985
Hi, I am writing again in response to the letter re itchy skin and ipf, but I noticed again that the original letter mentioned the skin before ipf. yesterday my mother had another blood test result, she has been bruising easily and has slightly swollen numb feet . they have found she is pre diabetic. There is possibly a link with itchy dry skin, a symptom of diabetes or high blood sugar. the reason I mentioned was that anyone with itching long term of the skin should have a blood sugar test , just Incase.
King regards Zoe James
October 25, 2018 at 10:14 am #14992
This is good advice Zoe, thanks for sharing your Mother’s experience with this. There might be a link between itchy skin and high blood sugar / pre-diabetes, although its really important for patients to individually talk to their doctors about this. Despite my dry, itchy skin and IPF, my risk for diabetes is very low and my blood sugars are in good range. Good information for people to consider, and check with their doctors about 🙂
October 25, 2018 at 7:07 am #14986Jacki BaumParticipant
Thanks, Zoe. Glad you found out what might be going on with your mom. Because I have been taking OFEV I have my blood tested every 3 months and so far all were normal. But having said that, I have had itchy skin for a long time, especially bad in winter when I lived in Chicago. Never could get an answer until now. The Curel does work for me and if her itchy skin continues this may help her as well. This disease is so difficult for many reasons, and all these side issues make it complicated for many of us. That is why this forum is helpful and let’s me know I am not on this journey alone. I am a hugger so I always sign off
October 25, 2018 at 10:16 am #14993
I know your reply was to Zoe, and I completely agree with you about how darn difficult this disease is for so many reasons! Glad you find the forum helpful, I do too and am so glad for everyone who is part of this community. I live in Canada, so the winters (like Chicago) are brutally cold and dry … likely contributing to my hands being itchy, dry and splitting. It is only autumn here but I’ve certainly noticed it already unfortunately. Hoping this isn’t a sign that the winter will be wicked tough on my hands…. fingers crossed!
I hope you’re doing well!
October 25, 2018 at 11:50 am #14995
Glad to hear you are having your bloods tested regularly. as Charlene said this is why it is interesting and so useful to share ideas and as you said factors or experiences. So much to consider.
Kind regards Zoe
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