Hey, who ever gets what they expect? In my life, the unexpected is most usually the rule. Right now, the unexpected is beyond comprehension. 3 years ago, my husband, Randy, was “diagnosed” with Sarcoidosis. He was told it would probably resolve on its own, no treatment necessary. Even though he continued to get worse, no treatment was recommended, and no further testing (to make sure there wasn’t something else going on) was done. What is sarcoidosis? “Sarcoidosis of the lung is primarily an interstitial lung disease in which the inflammatory process involves the alveoli, small bronchi, and small blood vessels.” It is not caused by smoking. It’s cause is basically unknown. Only 10% of those diagnosed with the disease develop a serious presentation. Randy’s is very serious.
Unhappy with the care received by the first pulmonologist, I researched “the best”. Places like the Cleveland Clinic, Mayo Clinic, Duke U, UT Southwestern, National Jewish Health….the earliest appointment was available in Denver at Natl Jewish Health, so we went there. Dr Hamzeh, a Sarcoidosis researcher, felt that Randy’s presentation of Sarcoid was odd….not at all typical, and he felt that another disease process might be going on. He suggested a lung biopsy to be performed at UT Southwestern in Dallas. It took a while to get in, of course, and when we did, most tests were re-run. Randy was on 40 mg of prednisone, so he had to slowly lower the amount as a biopsy is not able to be performed unless the prednisone is 10mg or under.
During June, my mother was going downhill quickly due to emphysema, the disease I lost my father to in 1985. She passed on June 22. Now, my husband has a serious lung disease. He was one week away from the biopsy when his oxygen saturation plummeted to 78-83 and his pulse was a racing 120-130. The ambulance came and took him to Medical City, but when he stabilized he was transferred to UT Southwestern. He is critical but stable, and has been in the ICU at UT Southwestern University Hospital (St Paul) for over a week. He has received tremendous amounts of steroids to calm the inflammation, but so far, his breathing stats have not improved greatly. A few days ago, the critical care pulmonologist recommended getting the transplant team involved. Uhhhh, okay.
My husband has been wonderful. He looks fine, speaks well, appears in great health…except he just cannot breath without A LOT of oxygen. This will not be a short road, or an easy one. His inflammation could still resolve, but even if it does, the recovery will be very difficult…I think the hardest part of all of this is being in limbo. We really don’t know what is going to happen or what we should do. Whatever we do, we will do it together. Click to Tweet.
Today is Sunday, so tomorrow and Tuesday should bring more information to digest. In the meantime, I am realizing I need to start taking care of myself. REALLY take care of myself. So, back to yoga, pilates, and another effort to meditate. Meditation is the hardest thing of all….my mind is always “on”, and trying to get it to turn off even for a few seconds is painful.
I would really like to hear from anyone out there who has had, or knows someone who has had, sarcoidosis, IPF, or especially a lung transplant. If you have a story to share, I ask you to do so. We are ruling nothing 0ut, and considering all options. I hope to hear your stories and experiences.
I wish I could help with information, anything I can do for you please let me know. I am only 4 hours away , if you need a shoulder to lean on. my deepest smphany go to and your kids.
Thank you so much, Marilyn. I just know everything is going to work out, Randy is so optimistic!
My thoughts and prayers are going out to you both. Right now, I am dealing with a similar problem. My honey of 38 years, was just diagnosed with Pulmonary Fibrosis. His lung biopsy surgery was this past Wednesday, so we have not gotten any results as of yet. God Bless I will be with you in spirit during your very scarey journey. Please keep the faith and think positive. Prayers DO work.
Please let me know the results!
well, we have the results, and my honey is being referred to the Cleveland Clinic to be evaluated for a lung transplant.
the Cleveland Clinic is excellent, no doubt about that. It is a crazy journey, but hopefully your loved one has more time than Randy had….his transplant occurred in crisis mode. I have blogged about it, every step of the way.
Stay optimistic…and positive!!! I had a double lung transplant 3.5 years ago and am doing great. I had Scleraderma, my transplant was done in Cleveland at the Cleveland Clinic. No one else could transplant me but they found a way to do it!!!
So far, everything is going great. His 11 days on vent and ECMO debilitated him, but he’ll be on his feet in no time. Yay, Cleveland Clinic!
Cleveland Clinic, ? Is that where the lung transplant was done ? Also, is your honeys heart good , or has that been comprimised due to his lung disease. I replied earlier to you about my own journey with my honey, still no results. we do see his 2 doctors on Tuesday.
No, his was done at UT Southwestern Dallas. He had an ablation and it fixed his arrhythmia. Tuesday where?
We are in Buffalo New York. Buffalo General Hospital is where we will be going to get the results of the lung biopsy. We also have a appointment in Rochester tomorrow Oct 2nd at Strong Memorial Hospital. To say it is scarey isn’t a strong enough word, Im terrified and just keep praying for God to give me the strength for our upcoming journey, no matter what it is. God Bless !!
Yes, it is scary. Thank goodness you aren’t in the ICU right now though, having all those tests. Randy is doing really well, I’m praying for you and sending you positive healing energy!!!!
The process of getting a transplant is a roller coaster. I am blessed to have had a double lung (lobar) transplant at UPMC in Dec ’12. I am doing great! I also felt that I would be ok, but I had to stay positive as a mother of 3 boys because I wanted to be here for them. Through the good lord and UPMC and my donor I now have more time to live my wonderful life! Keep your chin up! I would love to help in any way. Please contact me with questions. I was turned down by all facilities but UPMC. They are amazing! God bless…
I am so happy for you! I am meeting the most wonderful people as a result of this!
I am currently waiting for a double lung transplant at UPMC. Hope all works out well for your husband
Are you in the hospital? What is your diagnosis? I hope you are high on the list and I’m sending you positive thoughts and lots of healing energy!
Wow, this brings a lot of flash backs. My Mom was diagnosed with severe right sided pulmonary arterial hypertension and before her bilateral lung transplant she only had 10% of usable lung tissue left. Her normal resting pulse ox was in the low 80’s and this was with her oxygen on. She received her miracle transplant August 29th 2011. If you choose to travel down this road I will tell you it’s a scary one because you never know what the next turn will lead you to… but… we would have never changed our minds. We watched miracles happen right before our eyes, it’s an uphill fight but it’s soo worth it. A transplant was her only option and if she hadn’t gotten “the call” when she did she probably wouldn’t have made it another two weeks. Please email me anytime and I can go into more details with you. There are many support groups out there and people that can walk with you every step of the way. This will be his fight of a lifetime, a fight in my opinion that is completly worth it! You and your family are in my prayers!!!
Jillian
Randy had his double lung transplant miracle on September 10. I’ve kept this blog to document every step of this amazing journey…this roller coaster of emotion. Where did your mom have her transplant? Randy is still at UT Southwestern…but he is now in rehab!
I have been living with scaridosis(hope spelled right. if not forgive me) for 27yrs. It is a lung condition that we might carry in our genes. At first I have had it affect my skin and eyes now that I am older it came back. It does not go away-away, it just lies domate. May or may not return and if you get the right txment ok. Mine flared up again in 2010 this time affecting lungs and heart. On a mild form of vigra and O2. It affect those who have it different. I am sorry to hear of your husband but transplant helps.
He had his transplant on September 10! He is doing very well. Turns out he did not have sarcoid at all…it was IPF. Have you had a transplant?
I had a dbl lung transplant 11-10 12 at St. Joseph Hsp, Phoenix, Arizona. I had pulmonary fibrosis. I am 72 years old and I was so afraid that I wouldn’t be able to have it done because of my age. But I was able to and I feel wonderful. Better than I have in years. The transplant team is amazing . We have patients from all over coming here to get their transplants . I am so grateful for my second chance at life .
That is so wonderful! I have blogged every step of this journey, and Randy is now in rehab after a successful double lung transplant!
Thank you for responding and I wish you both the best. Just know that there will be “bumps in the road” on his way to recovery but it will be normal and well worth it. This surgery is really a life changing event. I have some receipents in our support group who are 6 years out, 10 years out, etc. So this is very promising for me. If you have any questions or if I can help please don’t hesitate to contact me.
I am so sorry to hear about all the things you are dealing with at the moment. Please take care of yourself as well. I hope that you will be able to connect with others that have gone thru the same thing. Take care.
Elena Peters recently posted…#MidLifeLuv Linky Party June 19/15
this has been a long road…I blogged throughout the ordeal, it is now 20 months later. But he is still here!
I don’t know the disease, but my husband has a growth in his lung. He’s not too bad with his breathing at the moment, so–here’s hoping.
As for meditation, I highly recommend it, having done the same for 30 yrs. At the start, each time I started thinking, I traced the thought back to it’s root and started again. It gets easier.
I have blogged about my husband’s sudden illness…it is now 20 months later. We are grateful he is with us…it was a miracle. Please read the whole series under Lung Transplant. What kind of growth does your husband have?
Tam, I’m so sorry you and your family are going through such a tough challenge. I wish all the best and speedy recovery for your husband — he is lucky to have you! Prayers to you.
Thank you for joining us at #MidLifeLuv. We’re so glad to get to know you and your blog.
Kimberly
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The challenge continues, but the worst happened 20 months ago. I wanted to introduce the blogs to your readers as illness can be a major wrench thrown into midlife. It is true…one’s life can change in an instant.
We just never know what life is going to throw at us, do we? I do hope you and your husband will be okay and it is a lesson to get a second opinion. Life can be so hard but hang in there and I’m sure with the support and love of your family and friends you will get through this. I haven’t heard of this condition so off to find out more about it. Take care.
Life definitely throws curve balls. Randy is 3 years post, and had his checkup today. All is well!
Oh Tam, I don’t even want to waste a moment of your time, as I know you are looking for help here. I offer my prayers. I don’t have any experience with this, just a heart transplant. So I’m hoping you hear from those who can help. I would like to share this so you can get some feedback. Is that okay?
Cathy, thank you. I am sharing this first post that I wrote 3 years ago when this unexpected journey began. I am so happy to tell you that Randy lived, and had his transplant. We celebrate 3 years post on Saturday!
Please take care of yourself, Tam. This is a lot for you both to be going through. I wish I knew someone who could give you some encouraging words. Meanwhile, I’m giving you a virtual hug.
Lois Alter Mark recently posted…life reimagined: i’m now organized!
Lois, you sweetie. This happened 3 years ago, and we celebrate Randy’s 3rd anniversary of his transplant on Saturday. To commemorate, I am going to post the entries I made 3 years ago. It really has been an incredible journey.
Wow, I can’t believe all you have been through. I admire Randy’s strength and the strong bond you two have. And how he lets you be you. It’s beautiful. I hope we get to meet IRL one day.
I hope so too Carol! What fun!