(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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Katherine
I will make a copy and ask him about the serrapeptaze. Sounds great and would like to try also if he approves.
I arm currently using NAC
N acytal cysteine 1000 mg, which I have run by my Dr and he approved of.
It loosens phlem also and I can tell the improvement in myself.
Shari

REPLY
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@pfists .. Shari That is just great! Would you ALSO pass by him the NAC .. that would give our Group … TWO different options since each of our bodies react differently! Hugs! Katherine

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@128128terry11t, Terry, Mystery SOLVED!! And guess who was smart enough to solve it? Colleen! Thank you Colleen!

Your post:
Can’t seem to find the post now.  It was said in the context of getting an IFD to help her arrive at an appropriate schedule of when to take antibiotics relative to other meds and multivitamins.  Love to connect with one!Terry

Ooooop the guilty party was ME!!  I must have been typing too fast!  Didn’t have a clue it was me! It was part of one of my posts to you! I typed too quickly! Should have been ID doctor .. Infectious Disease Doctor!! So sorry for the confusion .. that I myself caused!
Hugs to all! Katherine

REPLY
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

What a special ID doctor to take the time to do that.  This is a good business for someone who is knowledgeable about drugs.  They would make a fortunate.  Just imagine googling drug interaction and noting that a person works with you individually to make sure that your meds are not interacting poorly with one another and how best to take them.  I’d sign up!  Thanks for clearing up this mystery.Terry

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Hello Katherine – thanks so much for getting back to me. Here is my question: have you or anyone out there had any experience with dealing with the affects of high altitude while dealing with MAC and bronchiestisis (I have both)? The reason I ask is that just in the last year, since I began treatment, on my trips to Sun Valley, Idaho ( which is at about 6,000 feet) I get what is called “nocturnal asthma”. I have travelled there many times in my past but now it seems the high altitude is affecting my breathing. I wake up in the middle of the night and panic because I feel I am not getting enough air. Once I use my inhaler and sit up I can regain my ability to breathe, but for about 15 minutes it is very frightening. It only happens at night, after I have gone to sleep, though it also happens if I move too quickly… My daughter and son-in-law and my 3 grandchildren live there so I have good reason to want to be able to visit, but I am now reticent to travel there due to this problem. Clearly it is the altitude, as this has never happened to me anywhere else, and not where I live ( I live near Boston which is at sea level and I am fine at night. I just wonder if anyone in our group has had to deal with this, and if so, what they have done to counteract the symptoms. If anyone does have something to say about this, please do let me know! Many thanks, Pamela

REPLY
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@pamelasc1 Hello Pamela, I hope others will jump in because my ONLY experience is that when I asked Dr. Aksamit that with MY particular level of MAC and Bronchiectasis .. did he see any problem with me traveling to Machu Picchu because my son and family had just been there and were excited for me to go. They went up to close to 17,000 ft! Dr. Aksamit said for me NOT to go past 5,000. I asked him if it was health and/or age of 73. He said both but it would not be good for my lungs. That is my only experience. Hope others will share theirs!

This must have been so scary .. wonder if the 6,000 is similar to what I was told? Be sure to check with your doctor who knows your whole history. Hugs! Katherine

REPLY
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Hi, Pamela, I have bronchiectasis, MAC and atypical cystic fibrosis. My CF doc told me that if I went into a higher altitude, to be sure I could get back without any problem. I live in Phoenix, AZ (1,000 ft) and it’s popular to head up to the mountains in the warmer weather. Since being diagnosed, I have been up to about 4500 ft elevation but was only there for a short period of time before coming back. I was just visiting a friend so hadn’t planned on staying long. I doubt that I will attempt to go higher than that as I expect it would stress my already scarred and weary lungs. I do remember a few years back, before I was diagnosed with any of this, I was in New Mexico and got very short of breath just walking along flat ground. That was about 8,000 ft elevation. Now, if I’m planning on going anywhere, I always check to see what the elevation is. Linda

REPLY
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@lindam272, Linda, thanks a lot for jumping in .. good advice and help! Really ties in with what Dr. Aksamit told me. Might really help Pamela .. hope so. Hugs to all! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Hi KWilbur, im new to the Mayo onlibn site and am also already feeling welconed and less panicked like you.

Sorry you are having to deal with this too. I have a left upper lobe cavitary lesion 2cm and my thoracic surgeon says if it doesnt decrease he wants surgical biopsy. I had a bronchial one but they couldnt get enough sample, its likely candida and bacteria. I sure hope yours gets smaller too. I know its hard waiting. My next stufy is in spring. Is your body feeling weak too? My best regards, Julie

REPLY
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Dear Katherine, Linda, etc. – thanks so much for getting back to me about the affects and problems with altitude… I have also been checking out the videos on breathing techniques and just learning how to open the chest for better breathing practice.  Though it is very hard to accept that altitude does in fact have a strong impact on my breathing, I now have to get my mind around this reality.  Thanks so much again to all of you,  Pamela   

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888 .. Julie Hello Julie, so glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! I wanted to let you know that KWilbur, Kathryn may not respond to you .. she temporarily went off our Forum due to some demands in her personal life. She and all of us must put our health/energy level first and foremost .. she is doing what is right for her at this time. I am hoping some of our community will jump in who also have some of your issues .. share hints and ideas!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey.Sending you both a Big Hug in this tough time. Katherine

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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This is a great example of how we help each other:Calling on all fellow travelers with this question:Anybody have some muscle soreness taking the medication(s)?  If so, did they change the treatment or simply watch, etc?  Looking forward to hearing the answer.Terry

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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I appreciate your reply and have had a chance to read much of the posts here. Very supportive and lnformative, all of which i needed.

I dont expect you to reply to all this, its probably to much info but im needing to vent it out….so thank you for listening in advance.

Ive had many complications since a neck fusion three yrs ago and my many doctors are having a difficult time putting accurate diagnosis/reason for this lesion. I have a question, with the pulmonologist, rheumatologist , and lung surgeon ive seen for a year……shouldnt ive had a sputnum test already? I had a bladder infection turn into sepsis, extremely feeble, new shrimp allergies, serious sinus infection, bacteria and fungal problens. Juggling this with psoriatic arthritis, RA, and other connective tissue disease its hard in me. In the autoimmune group a person mentioned amyloidisis for me to check into. Do you know if antobe here suffwrs this with lung problems.
Wishing you a good afternoon abd again thanks for your help.
Julie

REPLY
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Last year, after being diagnosed with MAC, I was on oxygen for a while. I had a trip planned to Ireland. At the time of the trip I was off O2. My doctor was concerned about the flight but did not want me to cancel the trip. He recommended that I buy a pulse oxycimeter and carry a portable O2 machine with me. I did this and made the trip just fine. I only needed O2 when I got up and walked. Due to the altitude I did get short of breath on exertion. My doctor did not want me to let this disease control my life.

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888, Julie, I don’t know a thing about amyloidosis .. only about our disease. But if I was sitting in your shoes .. I would do the below with your Pulmonologist .. IF they are an INFECTIOUS DISEASE doctor .. ASK how many MAC/MAI patients they have treated in the past 12 months. If they are NOT knowledgeable about our disease .. you are wasting time/money/effort/pain. Get moving on FINDING the right Infectious Disease doctor .. start googling and asking questions! As @128128terry11t Terry on our Forum would tell you .. she has evolved from fearful to FEARLESS as a result of the support and help she has received from our wonderfully supportive community of people. You will/CAN also if you just keep putting one foot in front of the other .. educating yourself .. advocating for yourself .. AND not putting up with less than you deserve!

Julie, if it is only ONE thing you learn on our Forum is that YOU must be your OWN best advocate!! If I was sitting in your shoes I would go to your KNOWLEGEABLE Infectious Disease doctor AND REQUEST a sputum culture PLUS A “susceptibility panel”. You MUST remember .. doctors are NOT gods .. YOU are the employer .. THEY are the employees! YOU must take care of your body .. no one ELSE is going to do it for you! See below.

IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a ‘susceptibility panel’ IN ADVANCE of going on the antibiotic to tell EXACTLY what your MAC will respond to and WHICH of one of the few drugs that will work that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Julie, find that MAI/MAC answer. Knock that answer in or OUT. Then keep seeking your answers until you FIND your answer. Our bodies are complex .. but DO NOT become so focused on suggestions from Group/Forums that you run yourself ragged .. “become” every disease suggested by every person or that you read about. That will make you feel crazy! Be logical in your journey .. THEN seek out serenity and peace. This journey MUST be a serene one .. it is our LIFE .. we must make it as happy and serene EVERY step of the way as we possible can .. it is our ONLY life .. LIVE IT! Hope this helps just a little! Hugs to you! Katherine

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