Well, more like a year and six weeks. I started using HTS once a day back in April of last year. From the beginning I have really liked this treatment. Although it is very harsh and irritates the throat, it is extremely effective at mucus clearance. But I am finding it may have an additional benefit.
When I went into my last doctors appointment, I was having an increased amount of coughing. It was irritating, painful, and keeping me up at night. While my doctor was not concerned with the symptoms I was experiencing, he did mention "experimenting" with HTS during this time. Sometimes, as he explained it, HTS can be so irritating that it actually creates these types of coughing complications. So from May 9-May 30 (three weeks) I stopped using HTS. Within about a week, the long coughing spells stopped. But soon my sinuses started hurting. I started experiencing painful headaches and pressure around my nose. Very classic symptoms to indicate I had a sinus infection. Initially, I thought that I developed the sinus infection post-cold, which is typical. But on May 30 I started using HTS again and I have not had a sinus headache since! Amazing. I am hopeful that the HTS is keeping my sinuses in check. Now I have even more reasons to like this treatment.
But what do you do when the coughing returns? Will it be an on/off regimen then? Hope it all works well for you. Always concerned for you.
ReplyDeleteHi Colleen!
ReplyDeleteI have been following your blog for sometime now but have never posted a comment. First off its pretty awesome to find someone who has the same geneotype as me and who is older :) I am 27 years old. We are a very rare bunch. I am really excited to see that your overall health is very good.
I went to my CF clinic last week and they want me to start using the HTS. I am nervous about using this as I have heard mixed reviews. I guess you like using it. So I am going to give it a try and see how it does. Pulmoyzyme really thins out my mucus and I only use it around 2 times a week. Do you use Pulmoyzyme?
On a seperate topic PFTs. My current PFT FEV1 is in the high 60s. It is great to see your PFTs in the upper 90s and 100s. I wonder why things are different for people who have the same geneotype.
I have never been hospitalized (knock on wood) for CF which is very similar to you.
Take Care
John
Hi John. I am glad you left a comment. I don't know if you will see this or not, but I believe my PFTs are so high because I exercise four days a week. I have found that exercise is the key to keeping my PFTs up and my lungs clear. Good luck with using HTS. I'd like to keep in touch to hear your progress. Are you on facebook?
ReplyDeleteColleen
Currently, I do not have a Facebook. (I know I must be one of the very few) My wife has one so I use hers to checkout what people are doing. Haha.
ReplyDeleteSo our CF stories are similar. Here is mine. (Sorry this is a book!!)
So I was diagnosed with CF when I was 12 years old.(I am currently 27) Yea odd right. I had a sweat tests done when I was a little guy which came back normal. I always had a cough and was rail thin. So finally when I was 12 years old the allergist wanted me to have a sweat test done and a cheek swab for CF genes.
Again, the sweat test came back normal but the cheek swab revealed CF :( My genes were DF508 and a rare gene 3849+10kb-C-T. It was a shock but I was glad we had an answer. One thing I am very thankful for is never being hospitalized. (Knock on wood!)I am relatively healthy which I do not take for granted. Another amazing thing is that I am fertile which most CF males are not over 95% are not.
My wife and I never thought we would have trouble conceiving as I was fertile and we never thought she had any fertility issues. So the first step in our conceiving process was for Maria to be tested to see if she was a CF gene carrier. My wife is (caucasian/asian) and my CF Dr. thought she wouldn't be a carrier but I wanted to be sure so we had her sequenced for over 1,000 genes at Ambry Genetics (Thanks Ronnie Sharpe for sharing info about Ambry). So the blood test results came back and she was a carrier of a CF gene. A very rare gene that my Dr. never seen. I guess this gene is derived in Japan. This was a very big shock. So now we wanted to make sure our future child would never have to worry of CF. So in order to do this we would have to do Pre Genetic Diagnosis with IVF.
So then my wife had another test to see if she was infertile. The insurance required this before we begun IVF. Her test showed she had a blocked fallopian tube. Now insurance will pay for the IVF. She then had surgery to remove the fallopian tube that was blocked and they also removed half an ovary due to scar tissue and put a clamp on the other fallopian tube :( (MY WIFE IS A TRUE WARRIOR!!)
So now we were ready to begin IVF with 1.5 ovaries which makes it a little more difficult. Bc of possibility of less eggs and the PGD. PGD is when they take the embryo at day 3 and remove a single cell and send it off to test for CF. The lab has my gene sequence and my wife to check for CF on the embryos. Our first IVF cycle we had two non CF embryo's implanted which ended in a chemical pregnancy. This was really hard but it meant my wife was able to get pregnant. Second IVF we had two non CF embryo's implanted and one of them took :)!!!!
Our little girl Alayna is on her way October 23!
Thats my story!!!
John