Since I got through all the technical stuff in my first post, I thought I would touch more on how this has affected me emotionally.
It has been a roller coaster; there are days when I would love to stay in bed and pull the covers over my head and shut out the world, there are days when I want to punch someone in the face repeatedly, and there are days that are somewhat normal. But there is NEVER a day that goes by that I'm not aware of the disease that has taken over my lungs and turned my life upside down.
When I was relatively fresh into my chemo/prednisone/inhalers/immunosuppressant treatment, traveling to Denver, and trying to make sense of what was occurring, a good friend said something to me that has stuck. We were talking about how people were having a hard time understanding what was happening to me and they didn't know how to help. She said that if I had been diagnosed with cancer that it may be easier for people to understand what was going on. She got it, she got how I was feeling. Please empower yourself with as much information as you can get about an illness and if you have trouble finding info please ask.
The BO diagnosis was and is so difficult to comprehend especially since I 'look relatively healthy'. I don't 'look' like a person with dying lungs. I see the circles under my eyes and my pale skin but all too often I hear : "You look good". Please know that those words bring little comfort to me, I don't feel good, I'm just pretty good at putting on a happy face and trudging along. I've had to be a fighter from a young age and hope to continue fighting. Certainly there are days when my fighting spirit is nearly gone and its a day by day struggle or even a minute by minute struggle.
I have great family and friends to support me but even they don't know what to do. Some have stepped back because they don't know what to do. Some act like nothing is wrong, thats okay but I have to say that its easy to feel forgotten and just sending a quick email or text saying that you are thinking about me makes a huge difference.
No I don't want to dwell on my illness, thats why I still work and try and maintain a somewhat normal life but you still want to know you are thought about and cared for. I certainly am guilty of thinking and praying for someone during times of struggle but not letting them know --I am now becoming better at letting them know that I'm actively thinking of them.
I was driving home tonight and listening to Delilah and her sappy love songs. Tim McGraw's 'Live like you were dying' came on. Anyone that knows me knows I am not a country music fan, and now songs bring on a different meaning to me. Well I must have been a bit emotional (or just tired as I don't like to admit I cry) but I was crying listening to Tim. I can't go skydiving or rocky mountain climbing as described in the song(I did ziplining in the mountains while in Denver --obviously very stupid with the elevation and my lack of healthy lung function but I still like to think I'm normal-I nearly passed out on different occassions but thats another story). But the song does say the guy went 2.7 seconds on a bull named Foo Man Chu--who's up for a bull ride??
Remember to live like you were dying...
Wednesday, February 27, 2013
Sunday, February 24, 2013
Whats happening to me?!?!?!?
This first posting will be quite lengthy as I need to go back to spring 2011 when my life turned upside down. I will attempt to go month by month until I'm to the present day of Jan 2013.
Who am I... I am a child of God, I am a wife, I am a mother, I am a daughter, I am a sister, I am a friend, I am human and I'm facing my own mortality in my 30s.
A little background on myself: I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at age 18mos, this is an autoimmune disorder that attacks the joints--it affects every single one of my joints. Growing up, my arthritis was quite active and I could not do many of the physical activities that other kids got to do. I have been on medication since I was 5, saw doctors routinely and as a teenager the JRA calmed down and was stable on medication. I've had some further flares and trouble with my autoimmune condition over the years as an adult but most have been manageable.
Having been a patient most of my life, I chose a career in medicine so I could help others. I currently work as a Nurse Practitioner in an Internal Medicine office.
Lets start the story...
May 2011:
I had signed up for a local 5K walk, it was rainy and I noticed I was short of breath walking. I chalked it up to the rain and my arthritis. I couldn't walk as fast as I wanted and making my 45min goal was becoming increasingly difficult. I did make the goal but felt like something was wrong, but didn't give it much more thought.
River Bank Run/Walk--I walked with my friend Lisa-I couldn't believe I wasn't outwalking her!! :)
June 2011:
I started noticing shortness of breath when walking up the stairs, this was noticeable and unusual as I was in pretty good shape and enjoyed staying fit. I also noticed an inspiratory wheeze--why was I wheezing? I wondered if it was related to allergies. We went to a Tigers game and walking up the steps I was noticeably short of breath. My husband noticed my shortness of breath and asked what was wrong. I again didn't think too much into it but knew something wasn't right and decided to investigate further. I work in the same office my personal doctor is so I mentioned my symptoms to a NP colleague-Tara. I didn't know if it was my heart or lungs causing the shortness of breath. Tara and I decided we would trial an inhaler and check a chest CT to rule out a PE (blood clot in lung). The inhalers didn't really help, the CT was neg for a clot.
Tigers Game June 2011
July 2011:
I needed to make sure my heart was ok, a stress Echo was ordered. Now with this test you have an Echo (ultrasound) of your heart before and after exercise. You have EKG stickers on and get on a treadmill -after 2min increments the treadmill gets faster and the incline gets steeper. As the incline became more steep I increasingly struggled more with my breathing. I made it 9min out of the normal 12min protocol, they checked my oxygen level which was down to 88% and the test was stopped. I was so sweaty and felt like my heart was beating out of my chest. My heart was fine but your oxygen level should not drop like that. So my heart was fine which was a relief but what was the cause of this exertional shortness of breath?
The next testing was pulmonary function tests (PFTs) and a referral to a pulmonologist.
My PFTs revealed severe obstruction/39% lung function--this is normally seen in emphysema (never smoked) , alpha-1 anti-trypsin deficiency, or some other rare conditions. When I heard the results of the PFTs I was shocked--what was going on??
My doctor was as confused as I was and he ordered blood work to make sure I didn't have the above deficiency, he also checked some autoimmune antibodies. I did have a positive antibody for scleroderma but no skin signs of this condition. I was freaking out that I had scleroderma lung! I also had another high res chest CT which is a bit different than the prior one looking for any infection-this was normal.
Aug 2011:
I saw my pulmonologist, Dr Mcclelland, Aug 4. After reviewing my PFTs/normal CT/labs, it was determined the next step was a bronchoscopy to look at my lungs internally. He was worried about a type of autoimmune lung disease given my history. My repeat PFTs revealed lung function around 37%.
If the bronch was non-diagnostic I would need a lung biopsy. (I remember this day distinctly as it was the day before my birthday and here I was having a consult with a lung doctor and also remember after my consult Dr Mcclelland came back in and wished me a Happy Birthday) I thought to myself, what a birthday--I couldn't help but think of the worst.
August 18--bronchoscopy. I wasn't too nervous as I've had so much testing all my life. I'm a difficult person to sedate and told them I've been compared to a baby hippo. I did wake up at the end of the procedure choking as the doctor is lavaging my lungs for cell samples. He told me to hold on, he was almost done--what a feeling. Dr Mcclelland told me he was surprised how inflamed my lungs looked and was unable to get an adequate amount of samples as he would have liked because of the inflammation.
The testing came back neg for any type of viral/bacterial/fungal infection. And the samples were not adequate for pathology, I needed a lung biopsy.
Sept 7, 2011
I went into the hospital for the biopsy, I did not think it would be that big of a deal. The plan was to take 2 biopsies from my left lung thru small incisions using a video scope for assistance. I needed to be intubated which I was a little nervous about as I'm a difficult intubation due to cervical fusions from my arthritis. An anesthesiologist specializing in pain management saw me in holding first and asked if I would like an epidural for pain mgmt post-op. I was not anticipating this, I ignorantly didn't think It would be that painful. Pain has been a part of my life and thus I have a high pain threshold. I accepted the epidural, I thought I would just go with the flow. I then met with the anesthesiologist from the cardiothoracic team who would be doing the intubation, I explained that the one time I was intubated before that they had to actually go thru my nose. He had an air of cockiness about him and said it would not be a problem. Needless to say, the start of surgery was delayed as the anesthesiologist did indeed have a hard time with intubation and even came out after surgery to talk to my family (which is not protocol) to discuss the issues he had. I also found out that doing the actual biopsies were difficult as well, I had lung adhesions that the surgeon had to scrape away before getting to my lung tissue.
I got up to my hospital room around 8pm, feeling sick, large chest tube in place, and in A LOT of pain. I was a mess--I had lots of family and friends around me and I can remember being sooooo hot and even more my throat was on fire from the intubation. I'm sure it was tough seeing me this way-all they can do is try and get me comfortable--endless cold washcloths, ice chips, and prayers helped me. My friend Mehgan went home and got my pillow to help get me more comfortable.
I have a tough time with anesthesia and was throwing up all night--the anti-nausea meds were not working. I was begging for Compazine (I know from the past that this is the only med that works for me), the RN said the hospital was out due to a national shortage. The pain kept intensifying on top of this--the RN could not understand why--I had an epidural. I was trying to do anything to help with the pain--to no avail. Finally around 2am they had someone from anesthesia check on the epidural--it was out! And there wasn't anyone from pain mgmt anesthesia on call --just general anesthesia. I'm not sure why they couldn't send one of those to replace the epidural, but it didn't happen until 0900 the next AM. They gave me a Dilaudid PCA for pain mgmt, this is a machine that you push every 6min to give you IV pain medicine--at this point I was exhausted from surgery/pain/barfing and thinking about pushing a button was not on my radar. Thankfully, my friend Lisa who is a RN stayed overnight with me, pushed the button. She worked at the other hospital campus and checked with the pharmacy there and they HAD compazine suppositories/tabs! I had asked for these but the RN just kept stating they were out (the IV form was out-not the suppository). This was heart breaking, I could have had relief from the incessant vomiting hours ago. By this time, the day shift RN was there and after some push we got the Compazine and relief.
With the Compazine on board, a new epidural--life was much more comfortable.
Now, don't get the wrong idea--many people think that health care personnel make the worst patients-in some aspects this can be true but I know what its like to care for difficult people and I have vowed never to do that to others--so I promise I'm a very compliant, non-annoying patient. :)
The large bore chest tube was a bit uncomfortable, everytime you would take a breath you would feel it flip-flop over your lung--very strange sensation. I did anticipate having the chest tube for days, but my left lung continued with a collapse from the surgery (it needed to be collapsed for the biopsies to occur). Also those with rheumatoid have more trouble with reinflation of the lung after its been collapsed.
I wanted to get out of the hospital ASAP--so I walked those halls with my IV/chest tube/urinary catheter/epidural--I was quite the sight to see. The resident was able to pull out my chest tube Sun AM-I was worried this was going to hurt like a b****, but it didn't hurt at all. I was discharged on Sept. 11, 2011--the 10yr anniversary of the World Trade Center tragedy. I remember this as there were lots of TV specials due to the 10yr anniversary. That was a Sunday, I went in on a Weds. I thought I would work that wk but was unable to do so due to the pain. I was uncomfortable for a few more wks but started work the next wk.
During my wk home, I felt even more short of breath walking. I was anxiously awaiting to hear about my path results from the biopsies. I remember walking outside a few feet and feeling like I was walking thru jell-o, I was walking that slow! I was scared that was going to be my norm.
My PCP, Dr Baer called with the path results--I had autoimmune constrictive bronchiolitis obliterans-- Spectrum sent my path slides to U of M for confirmation of this diagnosis, because this disease is so rare--U of M concurred with the diagnosis. My immune system was attacking my lungs causing inflammation, destroying my small airways by scarring them which was causing the shortness of breath.
I've done my research on autoimmune lung conditions and this was the worst one to have--it normally does NOT respond to therapy, it is "aggressive and progressive in nature, and unresponsive to traditional therapies. Dr. Baer could tell I was short of breath talking to him on the phone, I also knew the next step was high dose prednisone. He wanted to start this ASAP, he paged Dr Mcclelland who was in agreeance and thus I started on 60mg prednisone daily.
Prednisone works well but is loaded with side effects--the most common wt gain/moon face/insomnia/emotional labilty. It did seem to help my shortness of breath but for a chronic insomniac this just escalated my insomnia. My local docs were trying to figure out the best treatment for this untreatable disease. No one knows much about this lung disease, making treatment and prognosis difficult to give. I started doing research on who knew about this disease, I found National Jewish Hospital in Denver, CO and knew I needed to get there.
It was also decided that in addition to high dose prednisone and inhalers that I would need to start IV chemo monthly to 'stun' my immune system. This chemo did not typically cause hair loss which was a relief but it's chemo and has many side effects.
Oct 2011:
I got an implanted device in my chest called a port-a-cath, this is because chemo is caustic to the veins, its an easy way to infuse the chemo and I didn't have to be poked for an IV.
I received chemo at a local cancer center, you have your own chemo cubicle with a TV/recliner but can still see other chemo patients around you. The place is depressing! You know everyone is sick in their own way, you are having poison drip into your body over several hours, and chemo makes you sick. I needed to get 6 total chemo treatments over a 6 month period.
I also got an appt in Denver, I am very blessed that I am in the medical field and my PCP also has connections. There was a doctor in my practice that recently moved from Denver and he was able to call a doctor friend to find out who would be the best doc at National Jewish to see with my condition. Dr Baer was able to call the medical director at my insurance company to expedite the prior auth needed to see the docs in Denver since they are out of network.
Late Oct: Greg and I were off to Denver. I had more bloodwork, another CT, esophogram, and their pathologist wanted to look at my lung biopsy slides.
Repeat PFTs showed my lung function around 37%, the CT showed inflammation in my lungs, and their pathologist confirmed the diagnosis of B.O. I met with a rheumatologist that specializes in autoimmune lung conditions and also a pulmonologist that specializes in these lung conditions.
They were very nice and informative and agreed I was on the right treatment. We needed to suppress my immune system aggressively. B.O. is an aggressive lung disease and unfortunately they could not predict my course, I would need to be monitored closely with my lung function locally. They explained that I may need a lung transplant! WHAT!?!?!? This was too much, I've lost my livelihood physically and now the words transplant come out. The pulmonolgist stated that B.O. is one of the worst lung diseases to have as it DOES NOT respond to treatment traditionally. But we had to try the recommended treatment. I also needed to get 'plugged into' a transplant center--if I continued to decline in lung function, I needed to be ready with a transplant center. My insurance wanted me to go to Detroit--they only do ~6 transplants a year---NOT ok with me. I have to say---DO YOUR RESEARCH, ask around. After much research, I found University of Wisconsin--they are a 'moderate' sized transplant center, relatively close and I could meet their criteria required for transplant in terms of relocation and getting there in the allotted time required.
My insurance still made me go to Detroit and that was a disaster that I won't go into, I needed to get prior auth for Wisconsin, again THANK YOU to my PCP!
Also, it was important to have everyone close to me and even those who didn't know me pray--pray for healing. We had the church elders pray over me for healing.
On my way to Denver, Minneapolis Airport
Oct 2011-Feb 2012
Chemo monthly--each dose my nausea after treatment worsened. They pre-medicate you but unfortunately it didn't work. I even tried a new anti-nausea med called Emend w/o much help. I got my chemo dose in November in the AM, went to work in the afternoon, then left for a conference in Chicago that evening. What a mistake! My poor friend/colleague, Heidi went with me to the conference and saw how miserable I became with the nausea. Conference days are long and I forgot to bring my good friend Compazine along with me.
I never wanted to stop working or stop living, and I can look back now and see how tired that made me. I wasn't sleeping, worked a stressful job seeing acutely ill patients, and the meds were taking a toll on my body.
My co-workers can tell you how many times I cried so easily because of the prednisone--it was a running joke -'Is Joyce going to cry today?'...also grieving the loss of my former self--which I'm still doing at times. You have to laugh at yourself or you will find yourself in a very dark place very quickly.
I'm not a cryer, I'm not one to show my emotions but it felt like I had no control of my body. I knew I had to be honest with others and share my feelings but it wasn't easy. Also, those around me didn't know what to do, some pretended like nothing was wrong and others cried along with me.
My monthly lung function checks remained in the high 30s'--still 'severe obstruction' but it wasn't declining...I needed to get off of this prednisone--the emotional side effects were too much at these high doses for so long. Finally at the end of Jan 2012, I began my slow taper off of prednisone (it can't just be stopped as your adrenals need to 'wake back up' so they can start producing their own form called cortisol). I completed the prednisone the 3rd wk of Feb and my last chemo was the last wk of Feb!!! WOOOOOOOOOHOOOOOOOOOOO!
Friends--pics keep your attention :)
Jan 17, 2012
I met with the transplant doctor at U of W. I was hopeful that if I didn't respond to therapy, that I could be listed for a lung transplant. I was told at Detroit that they take into consideration your quality of life, this theory was quickly dispelled at Wisconsin. Getting listed especially for lungs is a major undertaking. I was told I wasn't sick enough to be on the list, and if I was listed I would be near the bottom. I left there feeling completely defeated, how was I supposed to live like this?!? It felt hopeless! If my lung function dropped, then I should contact them again.
May 2012--
I flew back to Denver for follow-up with my doctors. My lung function was almost exactly as the same as Oct --they said 'I was very consistent', they also were a bit disappointed as they 'threw everything but the kitchen sink' at me and I didn't respond positively--I didn't regain any lung function. But they were hopeful that I seemed to at least stabilize. I wanted a minimalist regimen since this disease didn't seem to respond to treatment. Now some have argued that all the treatment 'stabilized' me, in my heart I didn't believe it and just felt like I poisoned my body and put myself and others thru hell watching it. Denver agreed that I could back off of my inhalers and some of the other oral meds. If my lung function wasn't going to get better and this was my new life I wanted it to be as simple as possible.
Are you still reading?
Summer 2012--
I continued routine visits with my rheumatologist and pulmonolgist and tried to remain as active as possible. It was hard with a young son, I couldn't do what I wanted with him. I started noticing late summer that I felt more short of breath, I knew something wasn't right.
Sept 2012--
My lung function dropped to 28% and fluctuated between 28-30%.
Oct 2012--
I returned to Denver for follow-up. They were disappointed to see my lung function had dropped and stated I needed to get on the transplant list. This was the only 'cure' for my disease. The pulmonologist I see stated he was always 'bummed when he sees new consults for BO on his schedule as this is one of the worst lung diseases to have and there wasn't much they could do to help'. Geez, great to hear but I appreciated his honesty.
The Denver docs stated I needed a lung transplant, this was my only hope--they understood my quality of life was greatly affected.
I worried that my overactive immune system would attack new lungs and was told all the immunosuppressants I would be on would make that very rare.
I needed to get back to Wisconsin. This of course needed to be approved by my insurance company which was never an easy feat. Our insurance company was VERY difficult to deal with and if I didn't have my PCP to advocate for me and contact the medical director of the ins. company himself then I wouldn't be where I am today.
Some people I talked to from the ins. company were difficult because I wasn't on oxygen. I had to have my lung doctor from Denver had to write a letter stating my disease is not one that requires oxygen, that although there are times when my oxygen level would drop, wearing oxygen would not be in my future. My disease attacks the small airways where they are destroyed ultimately by chronic inflammation then eventual scarring.
Nov 2012--
I talked with the transplant coordinator at Wisc., I was scheduled for Dec 11-14 for a slew of tests required before someone is listed for a lung transplant.
Dec 2012--
Here are choppy notes from when I was in Wisc--added afterthoughts will be in italics...
Dec11, 2012
First day of transplant testing
I started with donating 14 vials of blood and a urine specimen. I then had PFTS which are torture at this point. I cannot get much air in and out of my lungs and its easy to feel like your heart is coming out of your chest as it beats so hard.
I was surprised by having to give ABGs as well which took 3 attempts-2 in my left brachial artery and the last attempt in my right radial artery, these are not comfortable.
I then had to do a 6min o2 walk test, my o2 stays in high 90s but my heart rate quickly rises to 136-150. I'm quite short of breath as well.
We then met with the transplant social worker, she gave us A LOT of info-to the point of feeling overwhelmed. I need to arrange a charter flight over here when I get the call and I have to arrange the ambulance and see if Priority Health will cover the ambulance. Sometimes they bring in 2pts and determine who gets the lungs at that time so there is possibility that I could get the call and leave w/o new lungs. I would be inpatient 10-14 days pending all goes well post-transplant, I then need to stay in Madison 2-3wks for close monitoring. I must have a 24 hr caregiver with me at all times, checking vitals and spirometry twice a day. If my spirometry drops I must go back to the hospital. Rejection is obviously the biggest challenge of this transplant along with getting sick because I will be on very strong immunosuppressants and there is an open highway to lungs for bacteria and viruses thru the nose. Lung transplants are the highest for failure b/c of the direct exposure thru the nose.
The social worker also stated I WILL at least go thru 1 bout of acute rejection in the 1st yr which is very scary, you are admitted and pounded with IV steroids until stabilized. Sometimes patients go thru more rejections until the body stabilizes.
I will be on an acute cocktail of 3 drugs post-op x 6-9mos including a nebulized antibiotic, an antiviral, and an anti fungal --these are quite pricey and sometimes ins does not cover this. I will also be on 2-3 immunosuppressants lifetime.
I will be on prednisone lifelong.
I will receive bronchoscopies quite routinely the first yr and this has to be done at Madison. Again, if I have a drop in my home spirometry testing I have to get to Madison urgently (another plane ride?)
She gave us tons of paperwork on organ donation, survivor guilt (I forgot to mention during the post-op period hallucinations are quite common d/t high dose steroids, pain med, lack of sleep, and all the pain you will be in with 4 chest tubes and a Huge chest incision), and I signed power of attorney papers.
Our heads were spinning and still are from this visit.
I then saw a pulm rehab RN, she thought I was staying as active as I can and had little to offer. I would need rehab post-op, pulm and physical therapy.
I then had to go fill out paperwork for depression screening and then answer a bunch of questions to determine how I handle life, pain, do I follow doc orders and lots of other off the wall questions.
Our last visit was the lung transplant doc that I had met in Jan. I really wanted to make sure we were on the same page in regards to transplant. With my autoimmune dz there is concern about the BO coming back in my new lungs. Denver didn't think that would be an issue b/c of all the immunosuppressants I will be on but the transplant doc had some skepticism. I also said that I need to be looked at differently when listing me as I have a rare, very aggressive lung disease that does not respond to therapy,I cont to decline, and my dz does not normally require O2, he agreed. I also said that if I'm too complicated, I need to know then I will have to find another transplant ctr.
I really feel if Wisconsin says no to me it is b/c I'm too complicated.
The day was exhausting, draining, but informative.
Getting listed for transplants is complicated and appears to vary a bit from center to center, I can still walk quite a distance but become quite winded. This works against me as there is a certain score given pending on the distance walked in 6min. Also since I'm not wearing O2 this lowers my score (the higher the score the higher up the list). Thus the scoring is not perfect and there really should be some sort of consideration on the patient and their disease not just black and white numbers.
Dec 12, 2012
2nd day of testing. I didn't have to start as early this AM.
First testing included a panorex X-ray that takes a 360 degree view of my jaw/ face.
I then had a 1 view CXR to view the size of my lungs.
Sinus CT is next.
Infectious disease consult with Dr Fox, this was very informative. Since lung transplants are so risky you have to really attempt to minimize your exposure. Mold spores are all around us and dangerous when inhaled in transplanted lungs. I can't vacuum as this causes the spores to become airborne and I can't be around after someone vacuums for 90 minutes. Our vacuum must have a HEPA filter, we must also consider pulling up the carpet in our bedroom since I sleep there.
Viruses can travel 6 feet so I must keep a 6 feet circumference from sick people including Eric.
Need a terminal filter to purify the air.
I can't mow the lawn d/t possible mold exposure/other fungal spores. No gardening
CMV: I've never been exposed to this so if my donor lung has this antigen I could develop CMV illness which could be difficult on me.
Cardio thoracic surgeon, Dr. D
Donation after cardiac death (DCD), this is where someone's heart stops and life support is withdrawn, the other organs may still be viable. We were told that across the board nationally that there isn't a difference in these donated organs vs the ones you can receive from clinically brain dead pts (their heart is still beating).
Single vs double lung transplant.
My job-currently I'm constantly exposed to germs as I see acutely ill pts.
Aren't we cute?
Who am I... I am a child of God, I am a wife, I am a mother, I am a daughter, I am a sister, I am a friend, I am human and I'm facing my own mortality in my 30s.
A little background on myself: I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at age 18mos, this is an autoimmune disorder that attacks the joints--it affects every single one of my joints. Growing up, my arthritis was quite active and I could not do many of the physical activities that other kids got to do. I have been on medication since I was 5, saw doctors routinely and as a teenager the JRA calmed down and was stable on medication. I've had some further flares and trouble with my autoimmune condition over the years as an adult but most have been manageable.
Having been a patient most of my life, I chose a career in medicine so I could help others. I currently work as a Nurse Practitioner in an Internal Medicine office.
Lets start the story...
May 2011:
I had signed up for a local 5K walk, it was rainy and I noticed I was short of breath walking. I chalked it up to the rain and my arthritis. I couldn't walk as fast as I wanted and making my 45min goal was becoming increasingly difficult. I did make the goal but felt like something was wrong, but didn't give it much more thought.
June 2011:
I started noticing shortness of breath when walking up the stairs, this was noticeable and unusual as I was in pretty good shape and enjoyed staying fit. I also noticed an inspiratory wheeze--why was I wheezing? I wondered if it was related to allergies. We went to a Tigers game and walking up the steps I was noticeably short of breath. My husband noticed my shortness of breath and asked what was wrong. I again didn't think too much into it but knew something wasn't right and decided to investigate further. I work in the same office my personal doctor is so I mentioned my symptoms to a NP colleague-Tara. I didn't know if it was my heart or lungs causing the shortness of breath. Tara and I decided we would trial an inhaler and check a chest CT to rule out a PE (blood clot in lung). The inhalers didn't really help, the CT was neg for a clot.
Tigers Game June 2011July 2011:
I needed to make sure my heart was ok, a stress Echo was ordered. Now with this test you have an Echo (ultrasound) of your heart before and after exercise. You have EKG stickers on and get on a treadmill -after 2min increments the treadmill gets faster and the incline gets steeper. As the incline became more steep I increasingly struggled more with my breathing. I made it 9min out of the normal 12min protocol, they checked my oxygen level which was down to 88% and the test was stopped. I was so sweaty and felt like my heart was beating out of my chest. My heart was fine but your oxygen level should not drop like that. So my heart was fine which was a relief but what was the cause of this exertional shortness of breath?
The next testing was pulmonary function tests (PFTs) and a referral to a pulmonologist.
My PFTs revealed severe obstruction/39% lung function--this is normally seen in emphysema (never smoked) , alpha-1 anti-trypsin deficiency, or some other rare conditions. When I heard the results of the PFTs I was shocked--what was going on??
My doctor was as confused as I was and he ordered blood work to make sure I didn't have the above deficiency, he also checked some autoimmune antibodies. I did have a positive antibody for scleroderma but no skin signs of this condition. I was freaking out that I had scleroderma lung! I also had another high res chest CT which is a bit different than the prior one looking for any infection-this was normal.
Aug 2011:
I saw my pulmonologist, Dr Mcclelland, Aug 4. After reviewing my PFTs/normal CT/labs, it was determined the next step was a bronchoscopy to look at my lungs internally. He was worried about a type of autoimmune lung disease given my history. My repeat PFTs revealed lung function around 37%.
If the bronch was non-diagnostic I would need a lung biopsy. (I remember this day distinctly as it was the day before my birthday and here I was having a consult with a lung doctor and also remember after my consult Dr Mcclelland came back in and wished me a Happy Birthday) I thought to myself, what a birthday--I couldn't help but think of the worst.
August 18--bronchoscopy. I wasn't too nervous as I've had so much testing all my life. I'm a difficult person to sedate and told them I've been compared to a baby hippo. I did wake up at the end of the procedure choking as the doctor is lavaging my lungs for cell samples. He told me to hold on, he was almost done--what a feeling. Dr Mcclelland told me he was surprised how inflamed my lungs looked and was unable to get an adequate amount of samples as he would have liked because of the inflammation.
The testing came back neg for any type of viral/bacterial/fungal infection. And the samples were not adequate for pathology, I needed a lung biopsy.
Sept 7, 2011
I went into the hospital for the biopsy, I did not think it would be that big of a deal. The plan was to take 2 biopsies from my left lung thru small incisions using a video scope for assistance. I needed to be intubated which I was a little nervous about as I'm a difficult intubation due to cervical fusions from my arthritis. An anesthesiologist specializing in pain management saw me in holding first and asked if I would like an epidural for pain mgmt post-op. I was not anticipating this, I ignorantly didn't think It would be that painful. Pain has been a part of my life and thus I have a high pain threshold. I accepted the epidural, I thought I would just go with the flow. I then met with the anesthesiologist from the cardiothoracic team who would be doing the intubation, I explained that the one time I was intubated before that they had to actually go thru my nose. He had an air of cockiness about him and said it would not be a problem. Needless to say, the start of surgery was delayed as the anesthesiologist did indeed have a hard time with intubation and even came out after surgery to talk to my family (which is not protocol) to discuss the issues he had. I also found out that doing the actual biopsies were difficult as well, I had lung adhesions that the surgeon had to scrape away before getting to my lung tissue.
I got up to my hospital room around 8pm, feeling sick, large chest tube in place, and in A LOT of pain. I was a mess--I had lots of family and friends around me and I can remember being sooooo hot and even more my throat was on fire from the intubation. I'm sure it was tough seeing me this way-all they can do is try and get me comfortable--endless cold washcloths, ice chips, and prayers helped me. My friend Mehgan went home and got my pillow to help get me more comfortable.
I have a tough time with anesthesia and was throwing up all night--the anti-nausea meds were not working. I was begging for Compazine (I know from the past that this is the only med that works for me), the RN said the hospital was out due to a national shortage. The pain kept intensifying on top of this--the RN could not understand why--I had an epidural. I was trying to do anything to help with the pain--to no avail. Finally around 2am they had someone from anesthesia check on the epidural--it was out! And there wasn't anyone from pain mgmt anesthesia on call --just general anesthesia. I'm not sure why they couldn't send one of those to replace the epidural, but it didn't happen until 0900 the next AM. They gave me a Dilaudid PCA for pain mgmt, this is a machine that you push every 6min to give you IV pain medicine--at this point I was exhausted from surgery/pain/barfing and thinking about pushing a button was not on my radar. Thankfully, my friend Lisa who is a RN stayed overnight with me, pushed the button. She worked at the other hospital campus and checked with the pharmacy there and they HAD compazine suppositories/tabs! I had asked for these but the RN just kept stating they were out (the IV form was out-not the suppository). This was heart breaking, I could have had relief from the incessant vomiting hours ago. By this time, the day shift RN was there and after some push we got the Compazine and relief.
With the Compazine on board, a new epidural--life was much more comfortable.
Now, don't get the wrong idea--many people think that health care personnel make the worst patients-in some aspects this can be true but I know what its like to care for difficult people and I have vowed never to do that to others--so I promise I'm a very compliant, non-annoying patient. :)
The large bore chest tube was a bit uncomfortable, everytime you would take a breath you would feel it flip-flop over your lung--very strange sensation. I did anticipate having the chest tube for days, but my left lung continued with a collapse from the surgery (it needed to be collapsed for the biopsies to occur). Also those with rheumatoid have more trouble with reinflation of the lung after its been collapsed.
I wanted to get out of the hospital ASAP--so I walked those halls with my IV/chest tube/urinary catheter/epidural--I was quite the sight to see. The resident was able to pull out my chest tube Sun AM-I was worried this was going to hurt like a b****, but it didn't hurt at all. I was discharged on Sept. 11, 2011--the 10yr anniversary of the World Trade Center tragedy. I remember this as there were lots of TV specials due to the 10yr anniversary. That was a Sunday, I went in on a Weds. I thought I would work that wk but was unable to do so due to the pain. I was uncomfortable for a few more wks but started work the next wk.
During my wk home, I felt even more short of breath walking. I was anxiously awaiting to hear about my path results from the biopsies. I remember walking outside a few feet and feeling like I was walking thru jell-o, I was walking that slow! I was scared that was going to be my norm.
My PCP, Dr Baer called with the path results--I had autoimmune constrictive bronchiolitis obliterans-- Spectrum sent my path slides to U of M for confirmation of this diagnosis, because this disease is so rare--U of M concurred with the diagnosis. My immune system was attacking my lungs causing inflammation, destroying my small airways by scarring them which was causing the shortness of breath.
I've done my research on autoimmune lung conditions and this was the worst one to have--it normally does NOT respond to therapy, it is "aggressive and progressive in nature, and unresponsive to traditional therapies. Dr. Baer could tell I was short of breath talking to him on the phone, I also knew the next step was high dose prednisone. He wanted to start this ASAP, he paged Dr Mcclelland who was in agreeance and thus I started on 60mg prednisone daily.
Prednisone works well but is loaded with side effects--the most common wt gain/moon face/insomnia/emotional labilty. It did seem to help my shortness of breath but for a chronic insomniac this just escalated my insomnia. My local docs were trying to figure out the best treatment for this untreatable disease. No one knows much about this lung disease, making treatment and prognosis difficult to give. I started doing research on who knew about this disease, I found National Jewish Hospital in Denver, CO and knew I needed to get there.
It was also decided that in addition to high dose prednisone and inhalers that I would need to start IV chemo monthly to 'stun' my immune system. This chemo did not typically cause hair loss which was a relief but it's chemo and has many side effects.
Oct 2011:
I got an implanted device in my chest called a port-a-cath, this is because chemo is caustic to the veins, its an easy way to infuse the chemo and I didn't have to be poked for an IV.
I received chemo at a local cancer center, you have your own chemo cubicle with a TV/recliner but can still see other chemo patients around you. The place is depressing! You know everyone is sick in their own way, you are having poison drip into your body over several hours, and chemo makes you sick. I needed to get 6 total chemo treatments over a 6 month period.
I also got an appt in Denver, I am very blessed that I am in the medical field and my PCP also has connections. There was a doctor in my practice that recently moved from Denver and he was able to call a doctor friend to find out who would be the best doc at National Jewish to see with my condition. Dr Baer was able to call the medical director at my insurance company to expedite the prior auth needed to see the docs in Denver since they are out of network.
Late Oct: Greg and I were off to Denver. I had more bloodwork, another CT, esophogram, and their pathologist wanted to look at my lung biopsy slides.
Repeat PFTs showed my lung function around 37%, the CT showed inflammation in my lungs, and their pathologist confirmed the diagnosis of B.O. I met with a rheumatologist that specializes in autoimmune lung conditions and also a pulmonologist that specializes in these lung conditions.
They were very nice and informative and agreed I was on the right treatment. We needed to suppress my immune system aggressively. B.O. is an aggressive lung disease and unfortunately they could not predict my course, I would need to be monitored closely with my lung function locally. They explained that I may need a lung transplant! WHAT!?!?!? This was too much, I've lost my livelihood physically and now the words transplant come out. The pulmonolgist stated that B.O. is one of the worst lung diseases to have as it DOES NOT respond to treatment traditionally. But we had to try the recommended treatment. I also needed to get 'plugged into' a transplant center--if I continued to decline in lung function, I needed to be ready with a transplant center. My insurance wanted me to go to Detroit--they only do ~6 transplants a year---NOT ok with me. I have to say---DO YOUR RESEARCH, ask around. After much research, I found University of Wisconsin--they are a 'moderate' sized transplant center, relatively close and I could meet their criteria required for transplant in terms of relocation and getting there in the allotted time required.
My insurance still made me go to Detroit and that was a disaster that I won't go into, I needed to get prior auth for Wisconsin, again THANK YOU to my PCP!
Also, it was important to have everyone close to me and even those who didn't know me pray--pray for healing. We had the church elders pray over me for healing.
On my way to Denver, Minneapolis AirportOct 2011-Feb 2012
Chemo monthly--each dose my nausea after treatment worsened. They pre-medicate you but unfortunately it didn't work. I even tried a new anti-nausea med called Emend w/o much help. I got my chemo dose in November in the AM, went to work in the afternoon, then left for a conference in Chicago that evening. What a mistake! My poor friend/colleague, Heidi went with me to the conference and saw how miserable I became with the nausea. Conference days are long and I forgot to bring my good friend Compazine along with me.
I never wanted to stop working or stop living, and I can look back now and see how tired that made me. I wasn't sleeping, worked a stressful job seeing acutely ill patients, and the meds were taking a toll on my body.
My co-workers can tell you how many times I cried so easily because of the prednisone--it was a running joke -'Is Joyce going to cry today?'...also grieving the loss of my former self--which I'm still doing at times. You have to laugh at yourself or you will find yourself in a very dark place very quickly.
I'm not a cryer, I'm not one to show my emotions but it felt like I had no control of my body. I knew I had to be honest with others and share my feelings but it wasn't easy. Also, those around me didn't know what to do, some pretended like nothing was wrong and others cried along with me.
My monthly lung function checks remained in the high 30s'--still 'severe obstruction' but it wasn't declining...I needed to get off of this prednisone--the emotional side effects were too much at these high doses for so long. Finally at the end of Jan 2012, I began my slow taper off of prednisone (it can't just be stopped as your adrenals need to 'wake back up' so they can start producing their own form called cortisol). I completed the prednisone the 3rd wk of Feb and my last chemo was the last wk of Feb!!! WOOOOOOOOOHOOOOOOOOOOO!
Friends--pics keep your attention :)Jan 17, 2012
I met with the transplant doctor at U of W. I was hopeful that if I didn't respond to therapy, that I could be listed for a lung transplant. I was told at Detroit that they take into consideration your quality of life, this theory was quickly dispelled at Wisconsin. Getting listed especially for lungs is a major undertaking. I was told I wasn't sick enough to be on the list, and if I was listed I would be near the bottom. I left there feeling completely defeated, how was I supposed to live like this?!? It felt hopeless! If my lung function dropped, then I should contact them again.
May 2012--
I flew back to Denver for follow-up with my doctors. My lung function was almost exactly as the same as Oct --they said 'I was very consistent', they also were a bit disappointed as they 'threw everything but the kitchen sink' at me and I didn't respond positively--I didn't regain any lung function. But they were hopeful that I seemed to at least stabilize. I wanted a minimalist regimen since this disease didn't seem to respond to treatment. Now some have argued that all the treatment 'stabilized' me, in my heart I didn't believe it and just felt like I poisoned my body and put myself and others thru hell watching it. Denver agreed that I could back off of my inhalers and some of the other oral meds. If my lung function wasn't going to get better and this was my new life I wanted it to be as simple as possible.
Are you still reading?Summer 2012--
I continued routine visits with my rheumatologist and pulmonolgist and tried to remain as active as possible. It was hard with a young son, I couldn't do what I wanted with him. I started noticing late summer that I felt more short of breath, I knew something wasn't right.
Sept 2012--
My lung function dropped to 28% and fluctuated between 28-30%.
Oct 2012--
I returned to Denver for follow-up. They were disappointed to see my lung function had dropped and stated I needed to get on the transplant list. This was the only 'cure' for my disease. The pulmonologist I see stated he was always 'bummed when he sees new consults for BO on his schedule as this is one of the worst lung diseases to have and there wasn't much they could do to help'. Geez, great to hear but I appreciated his honesty.
The Denver docs stated I needed a lung transplant, this was my only hope--they understood my quality of life was greatly affected.
I worried that my overactive immune system would attack new lungs and was told all the immunosuppressants I would be on would make that very rare.
I needed to get back to Wisconsin. This of course needed to be approved by my insurance company which was never an easy feat. Our insurance company was VERY difficult to deal with and if I didn't have my PCP to advocate for me and contact the medical director of the ins. company himself then I wouldn't be where I am today.
Some people I talked to from the ins. company were difficult because I wasn't on oxygen. I had to have my lung doctor from Denver had to write a letter stating my disease is not one that requires oxygen, that although there are times when my oxygen level would drop, wearing oxygen would not be in my future. My disease attacks the small airways where they are destroyed ultimately by chronic inflammation then eventual scarring.
Nov 2012--
I talked with the transplant coordinator at Wisc., I was scheduled for Dec 11-14 for a slew of tests required before someone is listed for a lung transplant.
Dec 2012--
Here are choppy notes from when I was in Wisc--added afterthoughts will be in italics...
Dec11, 2012
First day of transplant testing
I started with donating 14 vials of blood and a urine specimen. I then had PFTS which are torture at this point. I cannot get much air in and out of my lungs and its easy to feel like your heart is coming out of your chest as it beats so hard.
I was surprised by having to give ABGs as well which took 3 attempts-2 in my left brachial artery and the last attempt in my right radial artery, these are not comfortable.
I then had to do a 6min o2 walk test, my o2 stays in high 90s but my heart rate quickly rises to 136-150. I'm quite short of breath as well.
We then met with the transplant social worker, she gave us A LOT of info-to the point of feeling overwhelmed. I need to arrange a charter flight over here when I get the call and I have to arrange the ambulance and see if Priority Health will cover the ambulance. Sometimes they bring in 2pts and determine who gets the lungs at that time so there is possibility that I could get the call and leave w/o new lungs. I would be inpatient 10-14 days pending all goes well post-transplant, I then need to stay in Madison 2-3wks for close monitoring. I must have a 24 hr caregiver with me at all times, checking vitals and spirometry twice a day. If my spirometry drops I must go back to the hospital. Rejection is obviously the biggest challenge of this transplant along with getting sick because I will be on very strong immunosuppressants and there is an open highway to lungs for bacteria and viruses thru the nose. Lung transplants are the highest for failure b/c of the direct exposure thru the nose.
The social worker also stated I WILL at least go thru 1 bout of acute rejection in the 1st yr which is very scary, you are admitted and pounded with IV steroids until stabilized. Sometimes patients go thru more rejections until the body stabilizes.
I will be on an acute cocktail of 3 drugs post-op x 6-9mos including a nebulized antibiotic, an antiviral, and an anti fungal --these are quite pricey and sometimes ins does not cover this. I will also be on 2-3 immunosuppressants lifetime.
I will be on prednisone lifelong.
I will receive bronchoscopies quite routinely the first yr and this has to be done at Madison. Again, if I have a drop in my home spirometry testing I have to get to Madison urgently (another plane ride?)
She gave us tons of paperwork on organ donation, survivor guilt (I forgot to mention during the post-op period hallucinations are quite common d/t high dose steroids, pain med, lack of sleep, and all the pain you will be in with 4 chest tubes and a Huge chest incision), and I signed power of attorney papers.
Our heads were spinning and still are from this visit.
I then saw a pulm rehab RN, she thought I was staying as active as I can and had little to offer. I would need rehab post-op, pulm and physical therapy.
I then had to go fill out paperwork for depression screening and then answer a bunch of questions to determine how I handle life, pain, do I follow doc orders and lots of other off the wall questions.
Our last visit was the lung transplant doc that I had met in Jan. I really wanted to make sure we were on the same page in regards to transplant. With my autoimmune dz there is concern about the BO coming back in my new lungs. Denver didn't think that would be an issue b/c of all the immunosuppressants I will be on but the transplant doc had some skepticism. I also said that I need to be looked at differently when listing me as I have a rare, very aggressive lung disease that does not respond to therapy,I cont to decline, and my dz does not normally require O2, he agreed. I also said that if I'm too complicated, I need to know then I will have to find another transplant ctr.
I really feel if Wisconsin says no to me it is b/c I'm too complicated.
The day was exhausting, draining, but informative.
Getting listed for transplants is complicated and appears to vary a bit from center to center, I can still walk quite a distance but become quite winded. This works against me as there is a certain score given pending on the distance walked in 6min. Also since I'm not wearing O2 this lowers my score (the higher the score the higher up the list). Thus the scoring is not perfect and there really should be some sort of consideration on the patient and their disease not just black and white numbers.
Dec 12, 2012
2nd day of testing. I didn't have to start as early this AM.
First testing included a panorex X-ray that takes a 360 degree view of my jaw/ face.
I then had a 1 view CXR to view the size of my lungs.
Sinus CT is next.
Infectious disease consult with Dr Fox, this was very informative. Since lung transplants are so risky you have to really attempt to minimize your exposure. Mold spores are all around us and dangerous when inhaled in transplanted lungs. I can't vacuum as this causes the spores to become airborne and I can't be around after someone vacuums for 90 minutes. Our vacuum must have a HEPA filter, we must also consider pulling up the carpet in our bedroom since I sleep there.
Viruses can travel 6 feet so I must keep a 6 feet circumference from sick people including Eric.
Need a terminal filter to purify the air.
I can't mow the lawn d/t possible mold exposure/other fungal spores. No gardening
CMV: I've never been exposed to this so if my donor lung has this antigen I could develop CMV illness which could be difficult on me.
Cardio thoracic surgeon, Dr. D
Donation after cardiac death (DCD), this is where someone's heart stops and life support is withdrawn, the other organs may still be viable. We were told that across the board nationally that there isn't a difference in these donated organs vs the ones you can receive from clinically brain dead pts (their heart is still beating).
Single vs double lung transplant.
My job-currently I'm constantly exposed to germs as I see acutely ill pts.
 |
12-13-12
More labs
Nutrition consult, labs look good, pre albumin a little low
Maintain current weight
Safe food handling
Financial consult, keep PH informed
Psych consult, make sure I'm sound to handle transplant and my caregivers can handle this. Memory test, math, 45 min interview with some unbelievable questions.
More labs
Nutrition consult, labs look good, pre albumin a little low
Maintain current weight
Safe food handling
Financial consult, keep PH informed
Psych consult, make sure I'm sound to handle transplant and my caregivers can handle this. Memory test, math, 45 min interview with some unbelievable questions.
Greg and Mehgan were also interviewed and asked if they understood the magnitude of the situation, make sure they were not being coerced into the situation, and their opinion on me and if I could handle the transplant.
Mehgan and I
Mehgan and I
12-14-12 final day
EKG -cks my hearts rhythm, easy breezy
VQ Scan-ck blood perfusion across my lungs, if single transplant is done they would take the lung with the worse perfusion
Heart cath--running (3 hrs) behind d/t an emergency. Starving! Heart is normal.
I've been poked so many times in my arms and wrists! It feels like I've been here for a month. Will be glad to be in my own bed.
EKG -cks my hearts rhythm, easy breezy
VQ Scan-ck blood perfusion across my lungs, if single transplant is done they would take the lung with the worse perfusion
Heart cath--running (3 hrs) behind d/t an emergency. Starving! Heart is normal.
I've been poked so many times in my arms and wrists! It feels like I've been here for a month. Will be glad to be in my own bed.
Because the heart cath was in the afternoon, we traveled back to Grand Rapids Saturday AM.
I really feel like I've been to war and back after that past week.
The transplant team meets every Tues and the testing needed to all come back before they decided to offer me lungs. They hoped to discuss this the following Tues Dec 18 and I was to expect a call a day or so after. I did get a call Dec 19 and they wanted to offer me bilateral lungs (which was a huge relief as I don't want to go thru this surgery and have 1 healthy lung and 1 diseased lung). U of W was concerned that I was a difficult intubation (I have cervical fusions that occurred naturally from my rheumatoid thus have very limited range of motion), they needed notes from the anesthesiologist that intubated me for my lung biopsy at Spectrum. They wanted to be totally prepared. I couldn't remember his name for the life of me, thankfully Pat in my office dropped everything she was doing and went to work hunting down my OR records. She faxed them to Wisconsin that same day, the problem was the next Tues the transplant team was suppose to meet was Tues 12-25 (Christmas) and the following Tues was 1-1 (new years) so there was going to be a bit of a delay. My transplant coordinator said she was going to touch base individually with the surgeon and the chief anesthesiologist before the full team met again.
After the holidays, the transplant team met again and now U of W just needed to send all the info to my insurance company and they needed to approve the lung transplantation, this could take 7-14days.
Jan 16, 2013
I was told by U of W that I need to have my phone on 24/7 and it needs to be by my side 24/7. I was at work, in an exam room, and my phone rang with the special tone (it sounds like an emergent fog horn) that I have programmed for U of W--HOLY MOLY! It was my transplant coordinator stating that I was active on the UNOS donation list. She asked if I was ready to be 'active', she could give me a few days. Am I ready?!?!?! How ready can one be to have their chest cracked open and organs replaced?? I'm as ready as I can be. I knew the official call was coming but my heart was still pounding hearing the words. I had the charter planes researched and gave her the #s. I had to be specific on how quickly I could get to Wisconsin and it appears if all goes well that I can get there within 2.5-3hrs.
I was told I needed to call if my condition changed, if I got sick, if I was put on antibiotics, if I was hospitalized, if I received a blood transfusion, etc, etc. I was grateful the patient I was seeing was the last before lunch as my mind was spinning.
Uof W avg rate for lungs is 8mos, I was told they had someone waiting for 3yrs and even one that waited 6yrs!!!! That sounds horrible and I pray that is not my fate.
Jan-present
I've researched lung transplants and it appears you have a better survival rate receiving bilateral lung transplants compared to a single. You can wait a long time for lungs so its been discussed about being listed at 2 transplant centers. Grand Rapids, MI has been approved for lung transplants in the last month and did their first lung transplant 2-4-13 ( a single lung to a 58 yr old man). Michigan is in a different region for organ transplantion than Wisc (UNOS divides the U.S. into regions and most contain 4-5 states pending the state's size). Should I list at Spectrum? They have been doing heart transplants for the last few yrs but are certainly not a big transplant center. I talked to Dr Mcclelland who talked with Spectrum's transplant doctor --he came from John Hopkins. His feeling was that Spectrum's transplant cardiothoracic surgeon has done 100s and 100s of transplant surgeries and it is key to have a stellar surgeon. There is something to be said about having this done locally as my family and support system is here and my docs are here--that is HUGE! But I have some reservation. It won't hurt to meet with the transplant doctor and compare notes, I meet with him March 4. We continue to pray about Spectrum and so far no red flags have been apparent.
How do I feel?? There always is an underlying current of anxiety as you never know when your phone is going to ring. I always feel exhausted and it is hard not to be able to do normal activities and do what you want to do. Never take your health for granted, and live and love like today is your last day.
The transplant team meets every Tues and the testing needed to all come back before they decided to offer me lungs. They hoped to discuss this the following Tues Dec 18 and I was to expect a call a day or so after. I did get a call Dec 19 and they wanted to offer me bilateral lungs (which was a huge relief as I don't want to go thru this surgery and have 1 healthy lung and 1 diseased lung). U of W was concerned that I was a difficult intubation (I have cervical fusions that occurred naturally from my rheumatoid thus have very limited range of motion), they needed notes from the anesthesiologist that intubated me for my lung biopsy at Spectrum. They wanted to be totally prepared. I couldn't remember his name for the life of me, thankfully Pat in my office dropped everything she was doing and went to work hunting down my OR records. She faxed them to Wisconsin that same day, the problem was the next Tues the transplant team was suppose to meet was Tues 12-25 (Christmas) and the following Tues was 1-1 (new years) so there was going to be a bit of a delay. My transplant coordinator said she was going to touch base individually with the surgeon and the chief anesthesiologist before the full team met again.
After the holidays, the transplant team met again and now U of W just needed to send all the info to my insurance company and they needed to approve the lung transplantation, this could take 7-14days.
Jan 16, 2013
I was told by U of W that I need to have my phone on 24/7 and it needs to be by my side 24/7. I was at work, in an exam room, and my phone rang with the special tone (it sounds like an emergent fog horn) that I have programmed for U of W--HOLY MOLY! It was my transplant coordinator stating that I was active on the UNOS donation list. She asked if I was ready to be 'active', she could give me a few days. Am I ready?!?!?! How ready can one be to have their chest cracked open and organs replaced?? I'm as ready as I can be. I knew the official call was coming but my heart was still pounding hearing the words. I had the charter planes researched and gave her the #s. I had to be specific on how quickly I could get to Wisconsin and it appears if all goes well that I can get there within 2.5-3hrs.
I was told I needed to call if my condition changed, if I got sick, if I was put on antibiotics, if I was hospitalized, if I received a blood transfusion, etc, etc. I was grateful the patient I was seeing was the last before lunch as my mind was spinning.
Uof W avg rate for lungs is 8mos, I was told they had someone waiting for 3yrs and even one that waited 6yrs!!!! That sounds horrible and I pray that is not my fate.
Jan-present
I've researched lung transplants and it appears you have a better survival rate receiving bilateral lung transplants compared to a single. You can wait a long time for lungs so its been discussed about being listed at 2 transplant centers. Grand Rapids, MI has been approved for lung transplants in the last month and did their first lung transplant 2-4-13 ( a single lung to a 58 yr old man). Michigan is in a different region for organ transplantion than Wisc (UNOS divides the U.S. into regions and most contain 4-5 states pending the state's size). Should I list at Spectrum? They have been doing heart transplants for the last few yrs but are certainly not a big transplant center. I talked to Dr Mcclelland who talked with Spectrum's transplant doctor --he came from John Hopkins. His feeling was that Spectrum's transplant cardiothoracic surgeon has done 100s and 100s of transplant surgeries and it is key to have a stellar surgeon. There is something to be said about having this done locally as my family and support system is here and my docs are here--that is HUGE! But I have some reservation. It won't hurt to meet with the transplant doctor and compare notes, I meet with him March 4. We continue to pray about Spectrum and so far no red flags have been apparent.
How do I feel?? There always is an underlying current of anxiety as you never know when your phone is going to ring. I always feel exhausted and it is hard not to be able to do normal activities and do what you want to do. Never take your health for granted, and live and love like today is your last day.
Aren't we cute?
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