Nov. 2014 This week I got an unexpected health diagnosis. It kind of knocked my socks off. It also took away my ability to make beads anymore. So I am changing my blog. I am sure I will write about beads sometimes. I have a whole studio to part with, but I have health issues that are much more important and I want to share my thoughts and challenges on this blog. I hope you will come along with me and share your words of wisdom or encouragement.
Today I received a post on my blog from a gal named Cathy Randy. It's the third reply under my Honesty post and also shown below. As I began reading I thought how nice, someone else with IPF is writing to me.....then I read more. So many incorrect facts within this little email. Number one, the drug she says she is taking as an immune suppressant isn't meant for people who have IPF. It's meant to be taken after an lung transplant, which she did not mention. It is to keep the body from rejecting the transplanted organ, not cure the disease. A transplanted lung does not have IPF. Then she says she found these people in south Africa who make these herbal medications and they have miraculously cured her. Don't you think if that was really happening that the doctors who treat this disease would know that? IPF is a deadly disease. There is no cure. Do you have the slightest clue what that really means to the person with that kind of diagnosis? It's devastating. The ONLY treatment for Idiopathic Pulmonary Fibrosis is a lung transplant. There are some prescription medications that slow the life ending process down, but there is NOTHING, as in NO THING that will stop this disease. Do NOT spread false hope to people who are desperate for a cure! I tried to find this woman's website.....surprise,surprise no access, just an address to order the herbal supplement. How evil can some people be?? I'm a retired RN and to me people who seek out those who are dying and give them false hope, in the guise of a cure, ( that costs money), are the scum of the earth. So Cathy Randy, if you are reading this, shame on you trying to take advantage of people who have only one hope, and that is a lung transplant!! Do something good in your life, become an organ donor, then you really would be doing something for those who have IPF.
Today, well actually yesterday since it's 2 am, two different friends came to see me. It was such good medicine. One of them came at my request to look at my new art and help me decide what I would charge for the pictures if I decided I wanted to sell them. We talked for well over 1 1/2 hours about our kids, our grandkids, just life in general. We've known each other for at least 30 years. Just as she was getting ready to leave one of my beadmaker friends called saying she was at Starbucks and could she bring me something and stop by....YES YES YES! We laid on my bead for over an hour while I sucked oxygen from my concentrator and looked at pictures of beads. It was probably the best medicine I have had in a long time. Thank you Ann and Fran, I love you both dearly.
I decided when I was diagnosed with pulmonary fibrosis that I wasn't going to keep my feelings to myself. When someone has a life ending disease, everything changes. ....in oh so many ways . The first year after my diagnosis was fairly normal. The only big change was that I had to start sleeping with oxygen at night. By the end of the second year though, I found myself using oxygen 24/7. That's was big. I am now hooked up to something that aids in my breathing, and I can't be without it. Doctors appointments and pulmonary re-hab appointments consume a good part of my life. I go to re-hab 3 times a week for 2 hours at a time. I never realized how much free time I had until it was gone.
Going to the grocery, the mall, out to dinner are all exhausting. It's just easier to stay home. Thank heavens for supermarkets that gather your order for you. All I have to do is unload, and that can be done at my pace. I'm good at entertaining myself, which is a blessing....maybe I'm just naturally lazy:). The thing I miss most though, if I am really honest here, are my friends. Several have been great about keeping up, but there are a few who have just disappeared. That cuts to the bone. So if you are reading this and you have a sick friend I have two words for you........be there.... In phone calls, cards, visits, whatever. Don't think about what you will say or how this makes you feel. Suck it up and BE THERE. Don't wait until they are gone to miss them. Dying is lonely, be there.
As of Wed last week I have completed every test. I lost 10 pounds and I am now officially on THE LIST. It's weird waiting for a transplant because you know in order to live someone else will have died. I've always been an organ donor, and since I was told I have a very healthy heart I guess I could still be one someday if my transplant didn't work out, but to breathe with someone else's lungs......what a gift! I think about dying a lot these ....how could I not? Someone asked me if I'm afraid and I said yes, because I am. I want to live for more than 72 years. I want to see my grandchildren grow, I want to take care of Sara and Hank. I want to see my son get married again. I would like to walk along the beach at Siesta Key and see the sun set once again. There's a part of me that is afraid that maybe it won't all happen.
In my mind I have planned my funeral which is very, very weird. I will write it all down soon. One thing that keeps crossing my mind, and it applies to very few people, but what I keep thinking is....if you didn't respect me in life, please don't pretend to respect me in death. I have very few unfinished relationships, but I cannot fix what I did not break. I find that extremely sad.
I have now completed every test, Xray, scan, and procedure for my transplant evaluation, except the colonoscopy......oh how I hate that one! I went to Florida last week to tell my mom about the possibility of a transplant. I told her I might not be down there again for another year or more. Fortunately her dementia kept that bit of info from sinking in. While in Florida I had a oxygen concentrator delivered to the room I was staying in. I was moving it over to an outlet and it tipped over and I fell on top of it. I felt one of my ribs move and afterwards had a lot of pain. An Xray didn't show much because my lungs are cloudy so the ribs do not show up well. No obvious fracture, but most likely a cracked rib. Those things really hurt! Taking a deep breath is a challenge! I was told it will take about 6 weeks to heal.
My need for full time oxygen has arrived which is one more thing to keep track of. Trying to be positive here, but finding it harder than usual this week.
The heart cath went ok, except for the fact that a resident left a bruise on my arm that is of humongous size. Got more info from my transplant coordinator after spending two hours learning about all that happens before during and after a transplant. I will be on immunosupresent drugs for the rest of my life, also Prednisone...the drug I love and hate. Love because it diminishes my joint pain, hate because it makes me so hungry. Patients do gain weight post surgery, so I need to lose 15 lbs to give me some leeway. Some of the other restrictions are as follows, no beadmaking post surgery, ever again. Now that makes me sad, but I like breathing more than making beads so I will just suck it up. I cannot be in rooms with any kind of fans, no flowers or plants inside the house, ever again. That's another sad one because I LOVE flowers. HB will just have to plant lots of flowers outside so I can enjoy looking at them. No alcohol, which isn't a big deal except that I love a Cosmo every once and awhile. No cats and when my dog goes to the Rainbow Bridge we can't get another one.
I have more lab work and X-rays next Tues and have to have a colonoscopy ASAP. If all goes well I should know if I have been accepted into the program within a couple of weeks. Once accepted you must stay within 2 hours of the hospital. That means no more Florida trips to see my 94 year old mom, no trips to St Louis to see two of our grandchildren. My mom knows I have pulmonary fibrosis but she doesn't know about the transplant plans so my sister and I will be making a quick trip down there in the next two weeks. This will probably be the last time I will be able to see my mom....that's a really hard one. My mom has dementia so I hope she doesn't realize this.
This is monumental in so many ways. Sometimes I feel really good about it and other times it scares the hell out of me.
Tomorrow is heart cath day.....scary! I have a friend that had one and she says it's a piece of cake because the drugs they give you make it so you don't care.......hoping this is true. Having it at 3 pm.
On Monday I had my first meeting with the transplant team. They are very specific about what will and will not happen. The oldest person they have transplanted lungs into was 73 at the time they did it. She is doing well. People seeking transplants must go through a battery of test including a heart cath, an echo cardiogram, colonoscopy, kidney function tests, miles of blood work etc. This is to make sure that your organs a functioning well and can accept the stress put on your body as it adjusts to the surgery and the new lungs. 90% of transplanted people make it through the first year, 50% make it to five years. Some people have lived 10-12 years with a lung transplant. The 50% at five years is kind of discouraging, but when you are diagnosed you are told that your life expectancy is 3-5 years. I've already lived 2 of those years. It is essential that you have a family team behind you as the recovery is slow and the patient needs much of assistance. A patient is in ICU for 2-3 days and then in the hospital for about two weeks. Afterwards there are many office visits and regular pulmonary therapy. My son and I were impressed with the team. They answered all our questions and I want to continue down this road. After all the testing they could tell me I am not a candidate. If I am one I will be put on the national waiting list. I really feel like I have nothing to lose, since this disease is going to kill me anyway. If a lung transplant gave me 5 more years it would be wonderful.
This Monday I start a trial medicine that hopefully slows down the disease process. 2 out of 3 people will receive the actual drug for six months. The others will get a placebo. After the 6 month trial everyone will get the drug. Something positive to do while I wait to see if I qualify for a transplant.....prayers appreciated :)